It's been a while since I posted, but things have been going so well and I've been busy with other stuff! To be honest, I have a harder time sitting at the computer and focusing, so I haven't been on it nearly as much.
I have been back for a couple of follow-up appointments, and my only concern at this point continues to be that ring of extra tissue that keeps growing back in my airway. So that means regular 'surprise' bronchs to dilate the area. I should really be catching on by now and planning for a bronch every visit!
My 30th birthday was back in November and my husband planned an amazing Birthday/Welcome Home party with friends and family. I had absolutely NO idea and I was very touched that everyone was there for me. Quite a few friends ended up sick at the last minute and decided not to come. That was too bad, but I appreciate that they cared enough to keep those bad germs away from me! So many people complain about hitting the big 3-0, but I see it as an accomplishment. Sure, we're all getting older but it's an achievement to pass a milestone.
I have gotten back into one of my hobbies- scrapbooking. I am about two and a half years behind, but that's okay. I didn't have the energy, motivation or creativity to do it while I was sick. Now I'm exited about catching up and getting back to doing the things I enjoy. Reading is next on my list! I have a huge stack of books collecting since I was sick and I can't wait to dive in.
The freedom has been wonderful. From cleaning the house to Christmas shopping, I feel like I can do anything! The last two years I was in the hospital in December and didn't do much shopping. It was fun to take care of all of it this year.
I love being in the Christmas spirit, which hasn't happened for the last couple of years. It so wonderful to celebrate with family. However, I can't help but think of my donor family at this time of year. Today is exactly five months post-transplant. The donor family must be having a difficult Christmas without a loved family member. A couple of weeks ago while driving along the edge of the city, I saw a man standing on the side of the road taking pictures. At first, I didn't know why. Then I saw the white cross in the ditch with a santa hat on top. I totally broke down crying. Was my donor family doing the exact same thing somewhere? The chances are good. I just hope that they know how special the gift of new lungs are to me, and my family. I hope that's a comfort to them.
I wish everyone a Merry Christmas and happy holiday season. I hope that you are able to enjoy time with your family and friends, whether you are at home or in hospital, post-transplant or waiting for that precious phone call. Merry Christmas!
Saturday, December 25
Thursday, November 11
Home.
My posts seem to be getting fewer and farther in between. That seems to be a trend with most of the blogs I follow- we all had our transplants within a few months of each other and we are spending time doing other things. I think that's a good sign.
Since my last post, I have come back home! I officially finished my three month program on Oct. 22nd, but we stuck around town an extra week. On the 29th, I was supposed to spend the day packing up our apartment and getting ready to leave. Instead, my breathing changed and I spent the day at clinic. Bloodwork, xrays, PFTs, and finally, a bronch. Oh joy. My PFTs had dropped 20% in a couple of days. It's crazy- even with a bad infection pre-transplant, my numbers would never drop so quickly. It scares me, and makes me stop again and think how precious and precarious this gift of new lungs can be. What if I had ignored it? What might have happened?
The bronch revealed that the ring of tissue around that anastomosis had grown back. It was dilated again, but we suspect it will continue to cause problems. Something to watch for I guess. We also took biopsies that were fine.
I stayed the weekend and returned to clinic on the 2nd. It was disappointing, because my motto had been 'home by Halloween.' No such luck, but not a big deal in the grand scheme of things. On Tuesday, my PFTs were back to normal and I was given the all -clear to go home! After nearly three and a half months, I was going home!
Our house was full of surprises, including a stocked fridge, bouquets of flowers, and a display of welcome home cards and artwork from my niece and nephews.
I have been busy around the house, unpacking and cleaning. I drove for the first time, which felt great. I am exercising everyday, both treadmill and weights. I am taking my dog for fabulous walks, to places in the community that I haven't been for a VERY long time! I am going to the grocery store by myself. I have met up with a couple of friends for lunch. I celebrated my niece's birthday- and we determined that I haven't gone upstairs in their house for over a year. A year! No need to avoid stairs now! I took the garbage out for the first time in ages. I raked leaves. I don't park in the handicapped spot. I went to the new Super Walmart for the first time- it was too intimidating with my oxygen, but I walked to every corner of the store to check it out. I went to the library for the first time this year- I was too worried to have books out if I got the call, and besides, I couldn't concentrate enough to read. I can get so much done in a day. It's easy to get caught up in a task, and then stop to think that this was something I couldn't do before!
I am still doing Tobi, so I haven't completely erased my CF lung routine. It's still a bit of a pain, but a minor one compared to the full routine! It was a nice feeling to go through my med drawers and get rid of the meds that are expired or no longer needed. I only wish that Alberta had a program where I could donate this medication for reuse. It looks like these programs are common in the US, but only a couple of provinces are experimenting with it. Oh well.
It feels so good to be back home!
Since my last post, I have come back home! I officially finished my three month program on Oct. 22nd, but we stuck around town an extra week. On the 29th, I was supposed to spend the day packing up our apartment and getting ready to leave. Instead, my breathing changed and I spent the day at clinic. Bloodwork, xrays, PFTs, and finally, a bronch. Oh joy. My PFTs had dropped 20% in a couple of days. It's crazy- even with a bad infection pre-transplant, my numbers would never drop so quickly. It scares me, and makes me stop again and think how precious and precarious this gift of new lungs can be. What if I had ignored it? What might have happened?
The bronch revealed that the ring of tissue around that anastomosis had grown back. It was dilated again, but we suspect it will continue to cause problems. Something to watch for I guess. We also took biopsies that were fine.
I stayed the weekend and returned to clinic on the 2nd. It was disappointing, because my motto had been 'home by Halloween.' No such luck, but not a big deal in the grand scheme of things. On Tuesday, my PFTs were back to normal and I was given the all -clear to go home! After nearly three and a half months, I was going home!
Our house was full of surprises, including a stocked fridge, bouquets of flowers, and a display of welcome home cards and artwork from my niece and nephews.
I have been busy around the house, unpacking and cleaning. I drove for the first time, which felt great. I am exercising everyday, both treadmill and weights. I am taking my dog for fabulous walks, to places in the community that I haven't been for a VERY long time! I am going to the grocery store by myself. I have met up with a couple of friends for lunch. I celebrated my niece's birthday- and we determined that I haven't gone upstairs in their house for over a year. A year! No need to avoid stairs now! I took the garbage out for the first time in ages. I raked leaves. I don't park in the handicapped spot. I went to the new Super Walmart for the first time- it was too intimidating with my oxygen, but I walked to every corner of the store to check it out. I went to the library for the first time this year- I was too worried to have books out if I got the call, and besides, I couldn't concentrate enough to read. I can get so much done in a day. It's easy to get caught up in a task, and then stop to think that this was something I couldn't do before!
I am still doing Tobi, so I haven't completely erased my CF lung routine. It's still a bit of a pain, but a minor one compared to the full routine! It was a nice feeling to go through my med drawers and get rid of the meds that are expired or no longer needed. I only wish that Alberta had a program where I could donate this medication for reuse. It looks like these programs are common in the US, but only a couple of provinces are experimenting with it. Oh well.
It feels so good to be back home!
Wednesday, October 27
Ready to Run!
Awesome news!
I ran on the treadmill today in the gym! I only ran for one minute at a time, but it felt great. My legs even remembered how to do it!
It was a pretty cool experience. As I increased the speed on the treadmill and started to increase my pace to a jog, everybody in the gym stopped to watch and cheer me on. I think I impressed a few people, including myself!
Now that I know I can do it, I will add running to my workout schedule a couple of times a week. I don't want to go too hard and injure my feet or legs, but I'd like to slowly increase my endurance. I have to get back into field hockey shape somehow!
I ran on the treadmill today in the gym! I only ran for one minute at a time, but it felt great. My legs even remembered how to do it!
It was a pretty cool experience. As I increased the speed on the treadmill and started to increase my pace to a jog, everybody in the gym stopped to watch and cheer me on. I think I impressed a few people, including myself!
Now that I know I can do it, I will add running to my workout schedule a couple of times a week. I don't want to go too hard and injure my feet or legs, but I'd like to slowly increase my endurance. I have to get back into field hockey shape somehow!
Tuesday, October 26
Three Months
It's been three months since my surgery, as of yesterday. I can't believe how quickly the time has gone! I guess the changing seasons help me to realize how long it's been. Summer and Fall have come and gone, and yesterday we woke up to snow. It looks like Winter has arrived! I don't think I'm ready for it yet!
I officially finished my physio program on Friday, but I'll be spending one extra week in the gym by choice. I did a six-minute walk test last week and I was able to walk twice as far as I could pre-transplant. It's amazing. I also had my last doctor's appointment, with my next one scheduled in two weeks. I will continue weekly bloodwork for a while to monitor my drug levels. Since stopping the VFend, my Tac levels have dropped so we've doubled my dose. My white blood cell count is also very low (for a second time) so I'm holding another immuno-suppressant for a couple of days to try and improve that.
I finally did it... and wrote my letter to my donor's family. I have thought about that letter every single day since transplant, but it was still hard to write. I wanted to make sure I said everything I wanted to and didn't leave anything out. I hope the family appreciates the letter and I hope it helps them have closure. I would love to receive a letter back from the family one day, but I have no idea if that will happen. Time will tell.
Over the weekend I noticed that my blood sugars started running low, which certainly hasn't happened in the last three months! I had been worried that I wouldn't feel the symptoms anymore, or that they'd be different, but I was able to identify the problem pretty quick. It looks like my body is slowly readjusting, and I have been able to scale back on my insulin. This is really encouraging! I was starting to worry that I'd be stuck on 80 units of insulin a day forever!
I have noticed a couple of other little things that make me happy, like my fingers becoming less clubbed. They weren't too bad before, but they are definitely reversing themselves!
I have noticed a couple of little things that bother me too- mostly minor side effects of the drugs. My blood pressure is high for the first time in my life, but I started a med to control that. I have had a harder time concentrating lately. I used to enjoy watching tv and being on the computer, but now I can only handle small doses, and I'm usually doing something else at the same time. I'm still always thinking about food, but I'm trying not to eat everything in sight! Time to learn how to like veggies for snacks! Since transplant, I have been obsessed with dill pickle chips. I liked them before, but they weren't my favorite and I only had them the odd time. Now I can't leave the grocery store without another bag- just in case I run out of chips at home. That would be a disaster! I also used to go to McDonald's at least once a week pre-transplant, and I haven't gone once since transplant. I haven't had the urge at all. Isn't that strange? I'm thinking it's my new lungs!
With the first three months gone by so quickly, I can't imagine how fast the next three will pass. It's hard to guess what's in store for me these next few months... all of the rules we've lived by no longer apply. I'm so excited for my new life!
I officially finished my physio program on Friday, but I'll be spending one extra week in the gym by choice. I did a six-minute walk test last week and I was able to walk twice as far as I could pre-transplant. It's amazing. I also had my last doctor's appointment, with my next one scheduled in two weeks. I will continue weekly bloodwork for a while to monitor my drug levels. Since stopping the VFend, my Tac levels have dropped so we've doubled my dose. My white blood cell count is also very low (for a second time) so I'm holding another immuno-suppressant for a couple of days to try and improve that.
I finally did it... and wrote my letter to my donor's family. I have thought about that letter every single day since transplant, but it was still hard to write. I wanted to make sure I said everything I wanted to and didn't leave anything out. I hope the family appreciates the letter and I hope it helps them have closure. I would love to receive a letter back from the family one day, but I have no idea if that will happen. Time will tell.
Over the weekend I noticed that my blood sugars started running low, which certainly hasn't happened in the last three months! I had been worried that I wouldn't feel the symptoms anymore, or that they'd be different, but I was able to identify the problem pretty quick. It looks like my body is slowly readjusting, and I have been able to scale back on my insulin. This is really encouraging! I was starting to worry that I'd be stuck on 80 units of insulin a day forever!
I have noticed a couple of other little things that make me happy, like my fingers becoming less clubbed. They weren't too bad before, but they are definitely reversing themselves!
I have noticed a couple of little things that bother me too- mostly minor side effects of the drugs. My blood pressure is high for the first time in my life, but I started a med to control that. I have had a harder time concentrating lately. I used to enjoy watching tv and being on the computer, but now I can only handle small doses, and I'm usually doing something else at the same time. I'm still always thinking about food, but I'm trying not to eat everything in sight! Time to learn how to like veggies for snacks! Since transplant, I have been obsessed with dill pickle chips. I liked them before, but they weren't my favorite and I only had them the odd time. Now I can't leave the grocery store without another bag- just in case I run out of chips at home. That would be a disaster! I also used to go to McDonald's at least once a week pre-transplant, and I haven't gone once since transplant. I haven't had the urge at all. Isn't that strange? I'm thinking it's my new lungs!
With the first three months gone by so quickly, I can't imagine how fast the next three will pass. It's hard to guess what's in store for me these next few months... all of the rules we've lived by no longer apply. I'm so excited for my new life!
Sunday, October 17
Another Bronch Down
It's been a very busy week. I had an sort-of unexpected bronch on Tuesday. It wasn't decided if I'd have a three-month bronch, but I started experiencing a couple of changes and we decided to go ahead with it. I'm glad that we had a little look. As it turns out, one of the anastomoses (sites where the new lungs are sewn onto the old airway) was growing some extra tissue. Since it was useless tissue, a balloon was used to stretch it out and break it up. Otherwise, everything else looked great. Yay! I got a couple of pretty cool pictures of my insides as a souvenir.
Of course, my two best friends had just arrived to visit with me, so we had to cut it short. It was too bad, but priorities I guess!
Although all of the cultures aren't back yet, I'm on oral Cipro and some IV Meropenem. It's made for some long days sitting in the IV Room, but it's worth it. I have also stopped some of the precautionary meds like the anti-fungal and the anti-viral. As a result, some of my immuno-suppressants needed to be adjusted as well.
It's my last week of physio starting tomorrow. I can't believe it's almost been three months already. I will be writing my donor letter this week. I have felt so much pressure to write the perfect letter. It always sounds good in my head, but it's another thing to put it on paper!
I know we shouldn't compare ourselves to others in recovery, but it's always so interesting! There were four others who had their lung transplants the same week as me (it comes in waves!) Of the five of us, I am by far the youngest. I wonder who else will be allowed to go home on schedule, after the three months of recovery. All of them are basically still using a wheelchair to get around the hospital. I know we all have our own paths to walk, but I wonder how much is effort and how much is luck. I have been fortunate for sure, but I have pushed myself. My husband has pushed me. My family and friends have expressed their support and it motivates me. I feel bad though, especially for those who have had complications. I hope they will be able to go home soon.
Another CFer got lungs last weekend! That's now three of the seven that are waiting. Good news!
Of course, my two best friends had just arrived to visit with me, so we had to cut it short. It was too bad, but priorities I guess!
Although all of the cultures aren't back yet, I'm on oral Cipro and some IV Meropenem. It's made for some long days sitting in the IV Room, but it's worth it. I have also stopped some of the precautionary meds like the anti-fungal and the anti-viral. As a result, some of my immuno-suppressants needed to be adjusted as well.
It's my last week of physio starting tomorrow. I can't believe it's almost been three months already. I will be writing my donor letter this week. I have felt so much pressure to write the perfect letter. It always sounds good in my head, but it's another thing to put it on paper!
I know we shouldn't compare ourselves to others in recovery, but it's always so interesting! There were four others who had their lung transplants the same week as me (it comes in waves!) Of the five of us, I am by far the youngest. I wonder who else will be allowed to go home on schedule, after the three months of recovery. All of them are basically still using a wheelchair to get around the hospital. I know we all have our own paths to walk, but I wonder how much is effort and how much is luck. I have been fortunate for sure, but I have pushed myself. My husband has pushed me. My family and friends have expressed their support and it motivates me. I feel bad though, especially for those who have had complications. I hope they will be able to go home soon.
Another CFer got lungs last weekend! That's now three of the seven that are waiting. Good news!
Monday, October 11
Thanksgiving
We had a great family dinner yesterday on Thanksgiving. It was nice to see everyone altogether. It was also nice to chat all I wanted, walk to the grocery store to pick things up, help carry stuff out, and the list goes on. My mother-in-law gave a fantastic toast about how strong I was through everything, and it brought tears to my eyes. I am so thankful to have such wonderful family, friends, puppy, and new lungs. Thank you donor and family. You have changed my life.
It was another busy week with those tests (which went well as far as I know). I am starting to feel a bit worn out, but there's only two weeks left of recovery in the gym. Although it's been great to have a routine to keep busy and get used to all this exercise, I am looking forward to some flexibility and a change of scenery!
It was another busy week with those tests (which went well as far as I know). I am starting to feel a bit worn out, but there's only two weeks left of recovery in the gym. Although it's been great to have a routine to keep busy and get used to all this exercise, I am looking forward to some flexibility and a change of scenery!
Sunday, October 3
This and That
Another week of recovery is in the books! I had some visitors this week which was nice. My meds were adjusted quite a bit this week, and now my white blood cell counts is in the target range. My insulin was also adjusted... up and up and up. I feel like no matter what I do, my blood sugar is ridiculous before dinner. It's frustrating but I can't control it, the drugs are in charge!
Another CFer I met had their transplant! If you're counting, that was two CFers within a week of each other! I'm excited for when I see them in the gym later, and I'm even more excited for my CF friends that are still waiting. All it takes is one donor, one match. Hopefully soon!
In the waiting room for lung transplant clinic, I met someone who was 16 years post-transplant. How amazing is that? He said he was one of the first lung transplants here.
I'm booked for some of my three-month assessment tests in the next couple of days. It's a little early, but I think I'm doing well enough. On Tuesday I have a VQ Scan and a Chest CT Scan. I also have a Chest X-Ray on Monday. This week I will start attending my appointments and the gym on my own. All by myself. My husband will be heading back to work full-time (although he'll come with me for the scans on Tuesday). I feel so independent and all grown up! No more babysitters! I am very appreciative of my husband and other family members that helped me out every day up to now, but it's nice to be able to do it on my own! It's an exciting step in my road to recovery!
I feel like real life is creeping up on me. Slowly, I seem to be doing more errands and making more phone calls, doing more housework and more 'normal stuff.' I can handle doing the laundry again. I am preparing the occasional meal- something I haven't done for at least a year. I never cooked much to begin with, but it's nice to be able to. I tried vacuuming for the first time in two years. I walk to the grocery store nearly everyday for this or that. I take the stairs. Now when I see someone else wearing oxygen, it nearly stops me in my tracks while I can remember how that used to be me. Wow. How things change.
Another CFer I met had their transplant! If you're counting, that was two CFers within a week of each other! I'm excited for when I see them in the gym later, and I'm even more excited for my CF friends that are still waiting. All it takes is one donor, one match. Hopefully soon!
In the waiting room for lung transplant clinic, I met someone who was 16 years post-transplant. How amazing is that? He said he was one of the first lung transplants here.
I'm booked for some of my three-month assessment tests in the next couple of days. It's a little early, but I think I'm doing well enough. On Tuesday I have a VQ Scan and a Chest CT Scan. I also have a Chest X-Ray on Monday. This week I will start attending my appointments and the gym on my own. All by myself. My husband will be heading back to work full-time (although he'll come with me for the scans on Tuesday). I feel so independent and all grown up! No more babysitters! I am very appreciative of my husband and other family members that helped me out every day up to now, but it's nice to be able to do it on my own! It's an exciting step in my road to recovery!
I feel like real life is creeping up on me. Slowly, I seem to be doing more errands and making more phone calls, doing more housework and more 'normal stuff.' I can handle doing the laundry again. I am preparing the occasional meal- something I haven't done for at least a year. I never cooked much to begin with, but it's nice to be able to. I tried vacuuming for the first time in two years. I walk to the grocery store nearly everyday for this or that. I take the stairs. Now when I see someone else wearing oxygen, it nearly stops me in my tracks while I can remember how that used to be me. Wow. How things change.
Sunday, September 26
Two Months Post-Tx
It's two months post-transplant already! It feels like the time went by quickly, but it's hard to fully remember where I was before my surgery. My husband and I went for a big walk yesterday morning. We trekked to the Farmer's Market and then to a store for hockey gear. It was a good 4km round-trip, not to mention that we had bags to carry. Along our route, my husband recalled the week before my tx when I couldn't even walk down this same block- we had to use a wheelchair to get to the store I wanted. Crazy. It seems that memories of how hard things were, how sick I was, and how I couldn't breathe are starting to fade.
Earlier this week we checked out a pre-season hockey game. Again, memories of the last time we were at a game pre-tx shocked me. My husband had dropped me off as close as possible, carried me up the stairs where there were no elevators, ran back to the chair to exchange tanks... ugh. This time, I walked every single stair. We parked blocks and blocks away for free. I didn't run out of oxygen once! What an enjoyable experience. Plus my sternal precautions are officially off (so no more OT!) and I could cheer with my arms above my head!
Today my husband and I participated in the Edmonton Heartbeat Run for the Mazankowski Heart Institute. That's the new part of the hospital where I had my surgery and stayed in ICU. It felt good to be there and show our support. I did the 1km Walk with two of the other heart transplant patients that I know from the gym. I don't know my time yet, but I walked as fast as I could! My husband ran the 5km and did great. The scenery was spectacular with the leaves changing color. Next year, I will run the 5km!
Earlier this week we checked out a pre-season hockey game. Again, memories of the last time we were at a game pre-tx shocked me. My husband had dropped me off as close as possible, carried me up the stairs where there were no elevators, ran back to the chair to exchange tanks... ugh. This time, I walked every single stair. We parked blocks and blocks away for free. I didn't run out of oxygen once! What an enjoyable experience. Plus my sternal precautions are officially off (so no more OT!) and I could cheer with my arms above my head!
Today my husband and I participated in the Edmonton Heartbeat Run for the Mazankowski Heart Institute. That's the new part of the hospital where I had my surgery and stayed in ICU. It felt good to be there and show our support. I did the 1km Walk with two of the other heart transplant patients that I know from the gym. I don't know my time yet, but I walked as fast as I could! My husband ran the 5km and did great. The scenery was spectacular with the leaves changing color. Next year, I will run the 5km!
Tuesday, September 21
IV Room Happenings
Today turned out to be an interesting day. I started off the morning with my last IV dose of Meropenem (yay!) and then headed to lung transplant clinic. There my meds were adjusted to lower my immuno-suppressants. Another yay! I am especially pleased about my prednisone dose being lowered to 15mg. I really hope that'll help with my blood sugar control. Perhaps it'll help with my current food obsession! I want to eat all the time, even of I'm full! It's getting out of control!
It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!
Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.
How cool is that?
Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!
I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.
I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!
Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...
It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!
Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.
How cool is that?
Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!
I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.
I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!
Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...
Thursday, September 16
Enough Lectures Already!
Things have been moving right along for me, but I know there's always the other side of the coin. In fact, it was pointed out by two separate people on the same day. Why does it always come in pairs for me? The other day I was doing my PFTs, and in between tests the RT (who I don't know very well compared to the others) launches into this huge lecture. He went on and on about how, now that I feel good I will go back home and hang out with sick people and catch colds and let my lung function drop and not think twice about it until suddenly I'm really sick and in rejection basically. He 'predicted' that in two years, I'll be back in the PFT lab with him having this same conversation, wishing I had taken better care of myself.
Are you serious??? I am trying not to think about this too much and get offended. He doesn't know me at all. That's apparent. I didn't go through a double lung transplant to NOT take care of myself. And being a well-trained, responsible CFer that takes good care of herself already, I am used to having a routine and making my health a priority. I think CFers (in general) differ from the other lung tx patients that way- it's already a way of life for us and not a brand new concept that we are learning to incorporate into our lives.
Later that day in the IV Room, I talked to another patient who had a double lung tx a few years ago and was in rejection. She also gave me the lecture saying I'd be feeling great, go back to work and hang around sick people and end up in rejection. Doom and gloom!
I have quickly realized that it's not easy to avoid people and their germs. No matter how far you try to stay away from people, they end up coming in closer. Personal space is a concept many people do not understand. I know everyone has gone to school or work or been in public sick. It shouldn't happen, but it does. Sometimes, people are contagious before they even realize they're sick. I know that avoiding germs won't be easy unless I stay at home... but that's no fun!!! I didn't go through this to live in a bubble!
It looks like cold season has officially started. Last week in the gym, there were three people in masks because they were sick. None of them were transplant patients. Which makes me wonder... why are you in the gym??? Sick support people should stay outside the gym. Sick staff should stay at home. We are all immuno-suppressed and it makes no sense why we should be put at risk like that. Again, it just proves that you have to look after yourself #1 because no one else will. Even when it's simple common sense.
Are you serious??? I am trying not to think about this too much and get offended. He doesn't know me at all. That's apparent. I didn't go through a double lung transplant to NOT take care of myself. And being a well-trained, responsible CFer that takes good care of herself already, I am used to having a routine and making my health a priority. I think CFers (in general) differ from the other lung tx patients that way- it's already a way of life for us and not a brand new concept that we are learning to incorporate into our lives.
Later that day in the IV Room, I talked to another patient who had a double lung tx a few years ago and was in rejection. She also gave me the lecture saying I'd be feeling great, go back to work and hang around sick people and end up in rejection. Doom and gloom!
I have quickly realized that it's not easy to avoid people and their germs. No matter how far you try to stay away from people, they end up coming in closer. Personal space is a concept many people do not understand. I know everyone has gone to school or work or been in public sick. It shouldn't happen, but it does. Sometimes, people are contagious before they even realize they're sick. I know that avoiding germs won't be easy unless I stay at home... but that's no fun!!! I didn't go through this to live in a bubble!
It looks like cold season has officially started. Last week in the gym, there were three people in masks because they were sick. None of them were transplant patients. Which makes me wonder... why are you in the gym??? Sick support people should stay outside the gym. Sick staff should stay at home. We are all immuno-suppressed and it makes no sense why we should be put at risk like that. Again, it just proves that you have to look after yourself #1 because no one else will. Even when it's simple common sense.
-end of rant-
Monday, September 13
Insulin and IVs
For the last week we've been treating my old CF bugs with antibiotics three ways: oral, inhaled and IV. If we're lucky, maybe we can get rid of them once and for all! It feels weird to go back to the old CF routine, even it hasn't been very long since that was my usual. I almost forgot how time consuming it is! I get my IVs at the hospital IV Room, and for the last three nights I've also had a Magnesium IV. Might as well since I'm already there! Needless to say, it feels like I have spent too much time there already, and it's only the halfway point.
Things are going well in the gym. I am already lifting more on the leg machines than pre-transplant, and there's no comparison on the treadmill! Lately I have been riding the bike because my feet and calves are still sore and cramping. I hoped the Magnesium IVs would help with that, but it doesn't look like it. I just can't seem to keep my Magnesium in a normal range! I know that the Tac is the main culprit, causing the body to waste Magnesium.
My sternal precautions are sort-of off. I am now seven weeks post and can use my arms more. I still need to be careful not to lift too much or do things that hurt my sternum. I will be transitioning from OT to upper body exercises in the gym over the next couple of weeks.
My biggest complaint is the diabetes situation. I switched my long-lasting insulin to Lantus, which is supposed to last about 24 hours and be constant throughout (instead of having a peak). The blood sugars are still not awesome, but are looking better. I am now using a sliding scale along with carb counting. I think it's a more accurate way to go. I'm just sick of all the pokes. I check my sugar at least four times a day, and give myself insulin at least six times a day. I also break up the larger doses into two shots, otherwise I find they hurt. So usually that's more like eight pokes. That makes a grand total of about 12 needles a day. I am running out of places to stick myself! I've been taking 30 units with breakfast alone lately. Before transplant, I would have maybe 30 units all week! I hope that things improve with time and I'm looking forward to my prednisone dose decreasing.
Things have been going really well. I am so happy with my progress and the lung transplant program. My diabetes is my only complaint, which isn't much to complain about, I know! Again, I can't help but think what a positive experience this has been and how much my life has changed. What a gift.
Things are going well in the gym. I am already lifting more on the leg machines than pre-transplant, and there's no comparison on the treadmill! Lately I have been riding the bike because my feet and calves are still sore and cramping. I hoped the Magnesium IVs would help with that, but it doesn't look like it. I just can't seem to keep my Magnesium in a normal range! I know that the Tac is the main culprit, causing the body to waste Magnesium.
My sternal precautions are sort-of off. I am now seven weeks post and can use my arms more. I still need to be careful not to lift too much or do things that hurt my sternum. I will be transitioning from OT to upper body exercises in the gym over the next couple of weeks.
My biggest complaint is the diabetes situation. I switched my long-lasting insulin to Lantus, which is supposed to last about 24 hours and be constant throughout (instead of having a peak). The blood sugars are still not awesome, but are looking better. I am now using a sliding scale along with carb counting. I think it's a more accurate way to go. I'm just sick of all the pokes. I check my sugar at least four times a day, and give myself insulin at least six times a day. I also break up the larger doses into two shots, otherwise I find they hurt. So usually that's more like eight pokes. That makes a grand total of about 12 needles a day. I am running out of places to stick myself! I've been taking 30 units with breakfast alone lately. Before transplant, I would have maybe 30 units all week! I hope that things improve with time and I'm looking forward to my prednisone dose decreasing.
Things have been going really well. I am so happy with my progress and the lung transplant program. My diabetes is my only complaint, which isn't much to complain about, I know! Again, I can't help but think what a positive experience this has been and how much my life has changed. What a gift.
Tuesday, September 7
FREE for the Long Weekend!
I finally got reliable Internet, so I'm back. I had a wonderful long weekend. This is the FIRST long weekend of the ENTIRE year that I wasn't in hospital. It felt so good to be FREE! It was just my husband and I hanging out for the weekend, no visitors. We woke up early every morning and went for a walk. The first morning my husband had to convince me to go. Once I got moving, we walked about 3km to check out the Farmer's Market. I had no idea I could walk so far. The next morning we set out for another early walk and we walked over 5km! I was so proud of myself. It's been a long time!
It is such a mental shift to be able to walk! I still recognize myself using the pre-transplant self-talk that I am trying to re-write. I tell myself I can't walk that far. I look for benches and chances to rest along the way. I try to plan how much time I'll be out, although there are no tanks to run out on me. Lucky for me, my husband sees right through it and calls me on it every time. He asks me if I'm out of breath, and the answer is always NO!
It's so strange to walk or exercise until my muscles get sore. This isn't a sensation that I'm used to. I used to walk until I was SOB and was forced to rest and my entire body was exhausted. What a change! I have been pushing myself in the gym too and making progress. My feet and calves have been sore, but it's a good feeling though.
Last week my PFTs reached an all-time, life-long high... 101% FEV1 and FVC. I was beaming for the rest of the day!
Results from the bronch have come in, and there is still Pseudomonas in my airways. Not a surprise by a long shot since I had it pre-transplant. We are going to treat it similar to an exacerbation and try to get rid of it once and for all. I hope it works!
Just saw that the CF sisters made it to the Top 10 on America's Got Talent. Great CF awareness. Good luck to them!
It is such a mental shift to be able to walk! I still recognize myself using the pre-transplant self-talk that I am trying to re-write. I tell myself I can't walk that far. I look for benches and chances to rest along the way. I try to plan how much time I'll be out, although there are no tanks to run out on me. Lucky for me, my husband sees right through it and calls me on it every time. He asks me if I'm out of breath, and the answer is always NO!
It's so strange to walk or exercise until my muscles get sore. This isn't a sensation that I'm used to. I used to walk until I was SOB and was forced to rest and my entire body was exhausted. What a change! I have been pushing myself in the gym too and making progress. My feet and calves have been sore, but it's a good feeling though.
Last week my PFTs reached an all-time, life-long high... 101% FEV1 and FVC. I was beaming for the rest of the day!
Results from the bronch have come in, and there is still Pseudomonas in my airways. Not a surprise by a long shot since I had it pre-transplant. We are going to treat it similar to an exacerbation and try to get rid of it once and for all. I hope it works!
Just saw that the CF sisters made it to the Top 10 on America's Got Talent. Great CF awareness. Good luck to them!
Wednesday, September 1
First Bronch. That I Remember
I had my first bronchoscopy yesterday, which was a bit of a surprise. I went into transplant clinic in the morning with no idea. I have had this big, bad cough for about a week. It was the kind of cough that takes your breath away. It made the back of my throat itchy, usually when I lay down to sleep. The cough was my only symptom- great PFTs, no flu-like or cold symptoms and no lack of energy.
We started off the appointment talking about the cough, getting some swabs done, and deciding on a short course of antibiotics just in case. Then my doctor heard the cough and made the call to have a little look. He managed to squeeze me in during the afternoon. I wasn't sure how to feel about this. I was definitely nervous. I was hoping we weren't going overboard, but it would be even worse if we didn't do the bronch and overlooked something serious.
I was anxious waiting for the bronch, as I am with any new procedure. I have had a bronch before, but that was in ICU and I was sedated before and after. This time I was going in awake! I ended up waiting an extra hour and a half, but my husband kept me company.
It was another positive experience. A little mouthwash, a little spray, a little sleepy-time meds... okay, a lot of them! I needed extra sedation before I was sleepy, but at least my port was already accessed (bonus!). My doctor even held my hand so I wouldn't be scared! The next thing I remember, I was waking up in the recovery room and being allowed to leave.
Apparently I was pretty entertaining in between! My husband said I was asking for our dog, for Lucky Charms, if jalapenos were on special (I don't even like them!) and if I'd had my transplant yet. My doctor came in to explain everything to us, which I don't remember. Apparently, I followed the conversation but as soon as we were done a topic, I asked about it like we hadn't discussed it. I also insisted on walking back from the hospital, which my husband wouldn't allow. Talk about determination.
Good thing there wasn't a video! Looks like I enjoyed my visit to the land of the blueberries. Cue the Unicorn After Wisdom Teeth video!
We started off the appointment talking about the cough, getting some swabs done, and deciding on a short course of antibiotics just in case. Then my doctor heard the cough and made the call to have a little look. He managed to squeeze me in during the afternoon. I wasn't sure how to feel about this. I was definitely nervous. I was hoping we weren't going overboard, but it would be even worse if we didn't do the bronch and overlooked something serious.
I was anxious waiting for the bronch, as I am with any new procedure. I have had a bronch before, but that was in ICU and I was sedated before and after. This time I was going in awake! I ended up waiting an extra hour and a half, but my husband kept me company.
It was another positive experience. A little mouthwash, a little spray, a little sleepy-time meds... okay, a lot of them! I needed extra sedation before I was sleepy, but at least my port was already accessed (bonus!). My doctor even held my hand so I wouldn't be scared! The next thing I remember, I was waking up in the recovery room and being allowed to leave.
Apparently I was pretty entertaining in between! My husband said I was asking for our dog, for Lucky Charms, if jalapenos were on special (I don't even like them!) and if I'd had my transplant yet. My doctor came in to explain everything to us, which I don't remember. Apparently, I followed the conversation but as soon as we were done a topic, I asked about it like we hadn't discussed it. I also insisted on walking back from the hospital, which my husband wouldn't allow. Talk about determination.
Good thing there wasn't a video! Looks like I enjoyed my visit to the land of the blueberries. Cue the Unicorn After Wisdom Teeth video!
Monday, August 30
Busy Weekend
It was a busy weekend and I definitely felt it at the gym this morning! We had lots of visitors this weekend, which was lots of fun! My sister and brother in law and nephews and niece came. I haven't had a visit with the kids since before transplant. I did technically see them in the hospital, through my window to the courtyard. It was ideal at the time- I rolled the IV lines and chest tube stuff out of view and waved at them so they knew I was alright.
We went out with them for lunch and then checked out West Edmonton Mall. West Ed is one of the world's biggest malls and has lots to do. We wandered around for a while, including a stop at the pet store to look at puppies! My husband and brother in law stayed to mini-golf with the kids while my sister in law took me back home for some quiet time before we went out for dinner.
On Sunday there was a fundraiser for CF that we all attended called Run for the Lung. Three more of our friends came up for the day to join us. Three of the guys participated in the 5K run. They all did great! It was hosted by a local pub and they put on a nice BBQ afterwards. The only drawback was the weather! It was brisk, but at least it didn't rain. We went for coffee with our friends afterwards to warm up.
At some point during the event, someone had told someone else that I was one month post-transplant. As everyone was leaving, a mom of a young CFer came up to chat with me. She said she was amazed how good I looked and wanted to hear my story. The nicest part was she asked if there was anything she could do for us, like make us a meal. We declined, but it was so sweet!
It was a busy weekend but it was fun. I missed both my naps, but it felt so good to do normal stuff!
We went out with them for lunch and then checked out West Edmonton Mall. West Ed is one of the world's biggest malls and has lots to do. We wandered around for a while, including a stop at the pet store to look at puppies! My husband and brother in law stayed to mini-golf with the kids while my sister in law took me back home for some quiet time before we went out for dinner.
On Sunday there was a fundraiser for CF that we all attended called Run for the Lung. Three more of our friends came up for the day to join us. Three of the guys participated in the 5K run. They all did great! It was hosted by a local pub and they put on a nice BBQ afterwards. The only drawback was the weather! It was brisk, but at least it didn't rain. We went for coffee with our friends afterwards to warm up.
At some point during the event, someone had told someone else that I was one month post-transplant. As everyone was leaving, a mom of a young CFer came up to chat with me. She said she was amazed how good I looked and wanted to hear my story. The nicest part was she asked if there was anything she could do for us, like make us a meal. We declined, but it was so sweet!
It was a busy weekend but it was fun. I missed both my naps, but it felt so good to do normal stuff!
Wednesday, August 25
One Month & Counting
Things continue to go smoothly this week. I continue to feel better and have more energy. Technically, Wednesday the 25th was one month after my transplant. I still can't believe how much my life has changed in one month! It's incredible (my new favorite word!)
This week, I stopped three of the medications I was discharged on. This includes inhaled Tobi. That marks the end of my CF lung routine! It was nice to slowly transition away from the routine, and now it's nice that it's behind me! I still feel like I'm cheating in the mornings when I set the alarm for half an hour before I need to leave! I'm pretty sure I'll get used to it though!
My dose of prednisone was lowered to 20mg this week. This is a good thing. My cheeks are so puffy, particularly when I wake up. I don't really mind, but I do notice the difference. I'm also going to blame the prednisone for my crazy appetite! I think about food all the time. Even when I'm full. I can't wait until my next meal. Or snack. And I can't say no to treats. Particularly ice cream, gelato, and slurpees. And gummies. And dill pickle chips. Luckily, I am not grazing all day, but having regular meals so I can accurately track my blood sugars. My sliding scale was revised yesterday, so hopefully we can get my afternoon prednisone highs down to a reasonable level. Even though I knew my CFRD would get worse after transplant, I didn't anticipate taking ~60 units of insulin a day! It feels like so much compared to before. I understand why it happens and how important it is to manage healthy blood sugars... but I'm still surprised.
I'm happy everyday at the gym when I can increase my weights or my speed on the treadmill. I'm already walking for 30 minutes at 3.0, while talking. This is already a big improvement from before transplant. It's weird to have my legs feel sore before I'm breathing hard. I'm not used to this!
The other day my husband and I walked for an hour and 20 minutes. We went non-stop, just checking out the beautiful university campus. Again, it was more of a mental challenge than physical. Previously with my O2, I needed to know that I was going to go from Point A to Point B with a rest stop here and there. There had to be a purpose to the walk, otherwise it wasn't worth the energy. It really challenged me to wander and not know where I was headed or have a task associated with the trip. Once I got over that, I really enjoyed the walk and just being free!
This week I also got my home spirometer. After a brief training session, this little toy is now a part of my daily monitoring routine. Every morning I weigh myself, check my blood pressure and pulse, check my temperature, and do my PFTs. I still need some practice because my PFTs at home are all over the place. I expect to see a pattern soon.
I saw my post-transplant chest x-ray for the first time. Wow! Those are some good-looking lungs, if I say so myself! The difference between the pre- and post- is incredible! I love it!
I'm looking forward to a fun weekend with friends and family!
This week, I stopped three of the medications I was discharged on. This includes inhaled Tobi. That marks the end of my CF lung routine! It was nice to slowly transition away from the routine, and now it's nice that it's behind me! I still feel like I'm cheating in the mornings when I set the alarm for half an hour before I need to leave! I'm pretty sure I'll get used to it though!
My dose of prednisone was lowered to 20mg this week. This is a good thing. My cheeks are so puffy, particularly when I wake up. I don't really mind, but I do notice the difference. I'm also going to blame the prednisone for my crazy appetite! I think about food all the time. Even when I'm full. I can't wait until my next meal. Or snack. And I can't say no to treats. Particularly ice cream, gelato, and slurpees. And gummies. And dill pickle chips. Luckily, I am not grazing all day, but having regular meals so I can accurately track my blood sugars. My sliding scale was revised yesterday, so hopefully we can get my afternoon prednisone highs down to a reasonable level. Even though I knew my CFRD would get worse after transplant, I didn't anticipate taking ~60 units of insulin a day! It feels like so much compared to before. I understand why it happens and how important it is to manage healthy blood sugars... but I'm still surprised.
I'm happy everyday at the gym when I can increase my weights or my speed on the treadmill. I'm already walking for 30 minutes at 3.0, while talking. This is already a big improvement from before transplant. It's weird to have my legs feel sore before I'm breathing hard. I'm not used to this!
The other day my husband and I walked for an hour and 20 minutes. We went non-stop, just checking out the beautiful university campus. Again, it was more of a mental challenge than physical. Previously with my O2, I needed to know that I was going to go from Point A to Point B with a rest stop here and there. There had to be a purpose to the walk, otherwise it wasn't worth the energy. It really challenged me to wander and not know where I was headed or have a task associated with the trip. Once I got over that, I really enjoyed the walk and just being free!
This week I also got my home spirometer. After a brief training session, this little toy is now a part of my daily monitoring routine. Every morning I weigh myself, check my blood pressure and pulse, check my temperature, and do my PFTs. I still need some practice because my PFTs at home are all over the place. I expect to see a pattern soon.
I saw my post-transplant chest x-ray for the first time. Wow! Those are some good-looking lungs, if I say so myself! The difference between the pre- and post- is incredible! I love it!
I'm looking forward to a fun weekend with friends and family!
Sunday, August 22
Milestones
Today is my one month transplantiversary already! I can't believe how quickly the time has gone by and how much has changed!
One month ago I was living my old life. Spending hours on treatments. Too tired to do the things I wanted to. Spending all of my energy on breathing. Trying my best to maintain my health, despite the monthly decline and IVs. It was exhausting, and I can clearly see that now.
Now...
I can walk fast and far
I can walk and talk at the same time
I can talk and talk and talk
I can breathe without thinking about it
I can hold my breath when I walk past a smoker
I can stand while waiting for something
I can go into the grocery store and follow my husband up every aisle
I can kiss my husband again
I can take the stairs
I can shower without exhausting myself
I can think about the things I enjoy, like traveling again, finishing our house renovations, and going out to do stuff!
If I didn't have the scar to prove it, I wouldn't believe it! My life has changed so much. It's incredible. My PFTs are in the mid-nineties. It is a miracle.
My husband and I also celebrated our sixth wedding anniversary on Saturday. Big weekend, I know! We usually travel somewhere different every year, and my husband always does the planning. Except for this year! Looks like I 'arranged' our trip this year! And we honestly wouldn't want to be anywhere else.
We got tickets to Cirque du Soleil Alegria which was in town. That was our first time going to one of their shows. We also had dinner at a nice restaurant with excellent food. My husband surprised me with a gift- a beautiful watch that has lots of meaning behind it. I am so lucky!
What a weekend!
One month ago I was living my old life. Spending hours on treatments. Too tired to do the things I wanted to. Spending all of my energy on breathing. Trying my best to maintain my health, despite the monthly decline and IVs. It was exhausting, and I can clearly see that now.
Now...
I can walk fast and far
I can walk and talk at the same time
I can talk and talk and talk
I can breathe without thinking about it
I can hold my breath when I walk past a smoker
I can stand while waiting for something
I can go into the grocery store and follow my husband up every aisle
I can kiss my husband again
I can take the stairs
I can shower without exhausting myself
I can think about the things I enjoy, like traveling again, finishing our house renovations, and going out to do stuff!
If I didn't have the scar to prove it, I wouldn't believe it! My life has changed so much. It's incredible. My PFTs are in the mid-nineties. It is a miracle.
My husband and I also celebrated our sixth wedding anniversary on Saturday. Big weekend, I know! We usually travel somewhere different every year, and my husband always does the planning. Except for this year! Looks like I 'arranged' our trip this year! And we honestly wouldn't want to be anywhere else.
We got tickets to Cirque du Soleil Alegria which was in town. That was our first time going to one of their shows. We also had dinner at a nice restaurant with excellent food. My husband surprised me with a gift- a beautiful watch that has lots of meaning behind it. I am so lucky!
What a weekend!
Wednesday, August 18
Week Two on the Outside
My second week as an outpatient has gone pretty smoothly. It helped to have a quiet weekend to rest. All of my other support people had gone home by Thursday so it was just my husband and I. We enjoyed our long walks, long chats and some TV time. We had my friend and sister visit on Sunday. I also enjoyed my first post-transplant diet coke, slurpee and piece of candy. Not all at once of course. But all in moderation!
The performance anxiety I had been experiencing subsided as I practiced my new routine. I have the hang of all the meds and now that I have my new phone, I feel less stressed about knowing what time it is.
My back and shoulders loosened up over the weekend and I am much more comfortable. The heating pad is still something I look forward to every day. I am taking one extra dose of Tylenol 3 to help as well.
The hospital routine is still challenging everyday because it isn't a routine. On Monday, I waiting and hour and 15 minutes after my appointment time to get my port accessed again and my bloodwork drawn. Luckily we had a bit of a buffer before my next dose of Tac was due. Then it was off to the PFT Lab, where the computers were down. So, there was another unexpected wait. But it was all worth it when I rocked my PFTs! I was positively beaming all day. I was so proud of my numbers. I have never seen anything like it. I think I am a bit ahead of the curve, with a FVC of 87% and an FEV1 of 91%! I still can't believe it. Only three weeks out of transplant!
Tuesday was also a long wait at the clinic. It was another positive visit. My magnesium levels have come up a touch and I also had the sutures from my six chest tubes removed. Progress!
I have been improving every single day. I feel stronger. I have more energy. I can walk faster and further. I can climb stairs. I can think about the things I enjoy again. I am excited about life!
The only downer all week has been hearing other lung transplant patients talk about my progress like I'm not even there. It happened twice in two days. We each need to walk our own path and we all came from different places. This transplant journey is an individual and unique one. I worked hard before my transplant to be in the best shape possible. I exercised and ate as much as I could! I prepared myself mentally and emotionally. I did my research. And now, after transplant, I continue to try my best. I want to excel and honor these amazing new lungs. I want to start my new life on the right foot. I have been lucky, I feel blessed, I have worked hard, and I feel like everything is falling into place after such a challenging last year and a half. It's frustrating that other people openly express their jealousy. I guess I wasn't expecting it out loud.
I want to be an inspiration and help motivate others.
The performance anxiety I had been experiencing subsided as I practiced my new routine. I have the hang of all the meds and now that I have my new phone, I feel less stressed about knowing what time it is.
My back and shoulders loosened up over the weekend and I am much more comfortable. The heating pad is still something I look forward to every day. I am taking one extra dose of Tylenol 3 to help as well.
The hospital routine is still challenging everyday because it isn't a routine. On Monday, I waiting and hour and 15 minutes after my appointment time to get my port accessed again and my bloodwork drawn. Luckily we had a bit of a buffer before my next dose of Tac was due. Then it was off to the PFT Lab, where the computers were down. So, there was another unexpected wait. But it was all worth it when I rocked my PFTs! I was positively beaming all day. I was so proud of my numbers. I have never seen anything like it. I think I am a bit ahead of the curve, with a FVC of 87% and an FEV1 of 91%! I still can't believe it. Only three weeks out of transplant!
Tuesday was also a long wait at the clinic. It was another positive visit. My magnesium levels have come up a touch and I also had the sutures from my six chest tubes removed. Progress!
I have been improving every single day. I feel stronger. I have more energy. I can walk faster and further. I can climb stairs. I can think about the things I enjoy again. I am excited about life!
The only downer all week has been hearing other lung transplant patients talk about my progress like I'm not even there. It happened twice in two days. We each need to walk our own path and we all came from different places. This transplant journey is an individual and unique one. I worked hard before my transplant to be in the best shape possible. I exercised and ate as much as I could! I prepared myself mentally and emotionally. I did my research. And now, after transplant, I continue to try my best. I want to excel and honor these amazing new lungs. I want to start my new life on the right foot. I have been lucky, I feel blessed, I have worked hard, and I feel like everything is falling into place after such a challenging last year and a half. It's frustrating that other people openly express their jealousy. I guess I wasn't expecting it out loud.
I want to be an inspiration and help motivate others.
Friday, August 13
Discharge & My First Week as an Outpatient
I was discharged on Monday, August 9th after two weeks in the hospital. It was probably the most exciting day for me since our wedding. There was similar anticipation and significance. I hardly slept the previous two nights because I was so excited. Every time my night nurse would look into my room, I was wide awake. She said I was like a little kid at Christmas. A little kid with the best present ever!
Discharge Day is always a crazy busy day and I spent most of the day on my feet. It was my busiest day yet! It felt glorious to walk out of the hospital to our new digs. We took lots of pictures because I want to remember this milestone. Or maybe I needed proof!
My new outpatient routine is:
Mondays & Thursdays: Bloodwork, PFTs, Physio & OT
Tuesdays & Fridays: Lung Tx Clinic, Physio & OT
Wednesday: Physio & OT
This week everything went fairly smoothly. I spent a lot of time worrying about it though. I am totally obsessed with the time now, which is pretty much a 180. I am paranoid about missing my immuno-suppressants. I was overwhelmed with everything new, and it made for a hard day on Tuesday. I'm going to call it performance anxiety. I was so good at my old routine, with my old body, and now we've changed it all up. I want to be good at this too.
My blood sugar has a huge spike in the late afternoon when the long-acting insulin wears off and the prednisone effect hasn't. I had an appointment with the Diabetes Clinic and they adjusted my sliding scale once again. This time, we are going to increase the short-acting insulin scale at lunch to combat that prednisone high.
Highlights this week:
- My best friend drove up to have lunch with me. It was the first time we saw each other since my transplant. It was also the first time she's been away from her baby for the whole day. Best lunch ever! There were lots of happy tears and great talk about this whole journey. Her support means so much to me.
- Going for a long walk with my husband. We walked about 10 blocks tube-free. I could walk and talk at the same time!!! And I could keep up! And no rests or breaks!
- Alone time, just my husband and I. All of my other fantastic support have gone home for now, so it's just the two of us. It feels great to talk about everything that's happened and start our new life together.
-I got a blackberry and all of my meds and appointments are already programmed in. I was considering the iPhone, but I already have an iTouch and I really like that instant messenger feature on the blackberry. Now my husband and I can connect anytime for free!
Discharge Day is always a crazy busy day and I spent most of the day on my feet. It was my busiest day yet! It felt glorious to walk out of the hospital to our new digs. We took lots of pictures because I want to remember this milestone. Or maybe I needed proof!
My new outpatient routine is:
Mondays & Thursdays: Bloodwork, PFTs, Physio & OT
Tuesdays & Fridays: Lung Tx Clinic, Physio & OT
Wednesday: Physio & OT
This week everything went fairly smoothly. I spent a lot of time worrying about it though. I am totally obsessed with the time now, which is pretty much a 180. I am paranoid about missing my immuno-suppressants. I was overwhelmed with everything new, and it made for a hard day on Tuesday. I'm going to call it performance anxiety. I was so good at my old routine, with my old body, and now we've changed it all up. I want to be good at this too.
My blood sugar has a huge spike in the late afternoon when the long-acting insulin wears off and the prednisone effect hasn't. I had an appointment with the Diabetes Clinic and they adjusted my sliding scale once again. This time, we are going to increase the short-acting insulin scale at lunch to combat that prednisone high.
Highlights this week:
- My best friend drove up to have lunch with me. It was the first time we saw each other since my transplant. It was also the first time she's been away from her baby for the whole day. Best lunch ever! There were lots of happy tears and great talk about this whole journey. Her support means so much to me.
- Going for a long walk with my husband. We walked about 10 blocks tube-free. I could walk and talk at the same time!!! And I could keep up! And no rests or breaks!
- Alone time, just my husband and I. All of my other fantastic support have gone home for now, so it's just the two of us. It feels great to talk about everything that's happened and start our new life together.
-I got a blackberry and all of my meds and appointments are already programmed in. I was considering the iPhone, but I already have an iTouch and I really like that instant messenger feature on the blackberry. Now my husband and I can connect anytime for free!
Step-Down Unit
I arrived on the transplant floor Tuesday afternoon, about a day and a half after surgery. I had a private room because I was still in isolation. The first thing I did was sit in one of the chairs. Ah, a change of position felt good.
I went on my first walk soon after. I still can't believe that the body can get up and go with all of those chest tubes, drugs, lines, and the trauma of major surgery.
It was a challenge to learn how to breathe normally. It was very irregular at first, and the more I thought about it, the harder it got. After a couple of days I didn't need to think about it anymore, it was natural. Coughing was also a challenge. I couldn't figure it out! Coughing used to be my signature! I had to ask my husband to demonstrate so I could copy him. It took a whole week before I could get out one little secretion! And so much effort!
I spent a lot of time with my family. Everyone took turns hanging out with me, which is what passes the time for me. As I became more independent they abided by the visitor hours so that I could push myself to do more things on my own.
We had to quickly create some strict rules around eating for me:
1. No sleeping while eating
2. Sit up while eating (feet on the floor)
3, Stay sitting up for at least half an hour after eating
4. No eating alone
5. No swimming before eating. (Yes that's backwards... but it was my contribution while I was on morphine!)
The nursing staff were amazing. They were so caring, professional, experienced and knowledgeable. A lot of the staff were around my age, so we had lots in common. It was like I was surrounded by old friends. The truly are a special group that work together very well. I haven't seen anything like that in a hospital before. I felt so lucky to be in their care.
One of my nurses and nursing attendants washed my hair for me in bed. It was better than the spa! I felt so pampered, and I know that they don't do that for everybody. My mom redid my braids afterwards and I felt so good.
One day during lunch I tried to catch the rainbows I was seeing. I reached to the right of my tray and over to the left. I didn't think anything of it until I saw everyone staring at me! It must have looked pretty crazy. One of the drugs made me see rainbows in my peripheral vision, and I had the urge to catch them!
I was able to go for more walks every day. I could walk further and faster.
Mentally, turning off my oxygen was a huge challenge. I knew it would be. My husband had already been trying to prepare me. It was my lifeline for years. I was nervous at first when the oxygen was turned down I couldn't hear the oxygen hissing anymore. I was nervous again when I would check the cannula and not be able to feel the oxygen because it had been turned down even more. Finally, one of my nurses came in and said that I had been on room air for the last hour and half! I couldn't believe it! My oxygen had been turned off! I was okay! I took off my cannula for a few minutes to celebrate. Then I put it back on. For security. I wore it all night, just in case my sats went down and they had to turn it back on at night. I was fine overnight, so the next morning I took it off and threw it away. Freedom.
Over these 12 days there were many more firsts: OT, physio in the gym, walk outside, time being line-free, shower, day pass for date night, and germ freak out in a crowd.
I found this to be such a positive experience. I can't explain it, but I woke up with a very positive, let's-get-this-done attitude. I could see improvements every single day. It was so encouraging and so incredible.
That's what I remember from my time on the step-down unit.
I went on my first walk soon after. I still can't believe that the body can get up and go with all of those chest tubes, drugs, lines, and the trauma of major surgery.
It was a challenge to learn how to breathe normally. It was very irregular at first, and the more I thought about it, the harder it got. After a couple of days I didn't need to think about it anymore, it was natural. Coughing was also a challenge. I couldn't figure it out! Coughing used to be my signature! I had to ask my husband to demonstrate so I could copy him. It took a whole week before I could get out one little secretion! And so much effort!
I spent a lot of time with my family. Everyone took turns hanging out with me, which is what passes the time for me. As I became more independent they abided by the visitor hours so that I could push myself to do more things on my own.
We had to quickly create some strict rules around eating for me:
1. No sleeping while eating
2. Sit up while eating (feet on the floor)
3, Stay sitting up for at least half an hour after eating
4. No eating alone
5. No swimming before eating. (Yes that's backwards... but it was my contribution while I was on morphine!)
The nursing staff were amazing. They were so caring, professional, experienced and knowledgeable. A lot of the staff were around my age, so we had lots in common. It was like I was surrounded by old friends. The truly are a special group that work together very well. I haven't seen anything like that in a hospital before. I felt so lucky to be in their care.
One of my nurses and nursing attendants washed my hair for me in bed. It was better than the spa! I felt so pampered, and I know that they don't do that for everybody. My mom redid my braids afterwards and I felt so good.
One day during lunch I tried to catch the rainbows I was seeing. I reached to the right of my tray and over to the left. I didn't think anything of it until I saw everyone staring at me! It must have looked pretty crazy. One of the drugs made me see rainbows in my peripheral vision, and I had the urge to catch them!
I was able to go for more walks every day. I could walk further and faster.
Mentally, turning off my oxygen was a huge challenge. I knew it would be. My husband had already been trying to prepare me. It was my lifeline for years. I was nervous at first when the oxygen was turned down I couldn't hear the oxygen hissing anymore. I was nervous again when I would check the cannula and not be able to feel the oxygen because it had been turned down even more. Finally, one of my nurses came in and said that I had been on room air for the last hour and half! I couldn't believe it! My oxygen had been turned off! I was okay! I took off my cannula for a few minutes to celebrate. Then I put it back on. For security. I wore it all night, just in case my sats went down and they had to turn it back on at night. I was fine overnight, so the next morning I took it off and threw it away. Freedom.
Over these 12 days there were many more firsts: OT, physio in the gym, walk outside, time being line-free, shower, day pass for date night, and germ freak out in a crowd.
I found this to be such a positive experience. I can't explain it, but I woke up with a very positive, let's-get-this-done attitude. I could see improvements every single day. It was so encouraging and so incredible.
That's what I remember from my time on the step-down unit.
The Signs
Leading up to the call and surgery, my family, friends and I had noticed quite a few signs of things to come. I have always believed that the right lungs would come at the right time. I think all of the signs are pretty cool and I want to note them before I forget.
1. The Bracelet
Already explained in a past post, my favorite nurse had given me the bracelet off his own wrist. The bracelet absorbs the bad karma so only good karma reaches you. This was two weeks before the call during my last hospitalization.
2. Week in Edmonton
I had just had the best week all year. I was up in Edmonton with my husband and my sister-in-law, nephews and niece came up to take me places. I had so much fun and it renewed my spirit. It was so special to have that time with those I love.
3. I Am Ready
During that awesome visit with my sister-in-law, I finally admitted that I was ready for the call. I felt like I had put in my time with my end-stage CF and the quality of life that I could tolerate was slipping away. I needed things to change.
4. Full Workout Routine
During the last two weeks since my discharge, I felt good enough to build back up to my full workout routine. During that week in Edmonton I diligently went to the awesome hotel gym and went hard. It was worth every last lunge to get in good shape for surgery!
5. The Facebook Post
My husband had updated his status to read:
Blair is tired, bored of working so much and hopes that next week brings good things!
July 17 at 11:46pm
I was wheeled out of surgery exactly one week after this post, almost to the minute.
6. The Twins
My husband and I met 11 years ago at a house party hosted by two twins. He worked with one twin and I worked with the other. One night, we both ended up at their party and totally hit it off. Over time, we drifted apart from these girls but recently reconnected on facebook. July 25th was their 30th birthday.
7. Rainbows
I thought a rainbow would be my sign, and my best friend and I were just emailing each other about rainbows we had been seeing during my week stay in Edmonton. I happened to catch one, although it wasn't very impressive- not my sign. On the morning of my call, my sister-in-law saw a beautiful rainbow as she drove to Edmonton. That was my rainbow!
8. Famous Last Words
During dinner the night of the call, my husband said that he needed until Tuesday to get things organized at work. I couldn't believe he said that. I remember thinking, oh boy, don't make a big deal out of it...
9. Air Ambulance
Despite all of the time we had been spending in Edmonton, I had a feeling that I'd go by plane.
10. The Psalm
The morning of my call, my best friend was singing the psalm at church. It was all about faith and waiting for things to come and my friend thought of me the entire time she sang. By the time she got home from church, there was a message from me saying that I had gotten the call and was in Edmonton.
11. The Eagle
When my husband's Aunt heard news of my call, she was sitting on a patio on Vancouver Island and a bald eagle majestically flew right over top of them. Freedom!
12. 65_Red Roses
The documentary of Eva's lung transplant journey was shown on TV again. I knew it was scheduled for Monday night, but it also ran on Sunday night. I had lots of nurses come in and tell me they had just watched it and admired both Eva and I. I can relate to Eva and her transplant journey in so many ways.
Most Importantly:
I am not one to talk a lot about my relationship with God, but I can see how His plan was meant for me. Everything worked out perfectly. I was surrounded by those I love during my time of need. Somewhere, another family was saying their goodbyes and providing me with the most amazing gift I could ever receive. I am truly blessed.
1. The Bracelet
Already explained in a past post, my favorite nurse had given me the bracelet off his own wrist. The bracelet absorbs the bad karma so only good karma reaches you. This was two weeks before the call during my last hospitalization.
2. Week in Edmonton
I had just had the best week all year. I was up in Edmonton with my husband and my sister-in-law, nephews and niece came up to take me places. I had so much fun and it renewed my spirit. It was so special to have that time with those I love.
3. I Am Ready
During that awesome visit with my sister-in-law, I finally admitted that I was ready for the call. I felt like I had put in my time with my end-stage CF and the quality of life that I could tolerate was slipping away. I needed things to change.
4. Full Workout Routine
During the last two weeks since my discharge, I felt good enough to build back up to my full workout routine. During that week in Edmonton I diligently went to the awesome hotel gym and went hard. It was worth every last lunge to get in good shape for surgery!
5. The Facebook Post
My husband had updated his status to read:
Blair is tired, bored of working so much and hopes that next week brings good things!
July 17 at 11:46pm
I was wheeled out of surgery exactly one week after this post, almost to the minute.
6. The Twins
My husband and I met 11 years ago at a house party hosted by two twins. He worked with one twin and I worked with the other. One night, we both ended up at their party and totally hit it off. Over time, we drifted apart from these girls but recently reconnected on facebook. July 25th was their 30th birthday.
7. Rainbows
I thought a rainbow would be my sign, and my best friend and I were just emailing each other about rainbows we had been seeing during my week stay in Edmonton. I happened to catch one, although it wasn't very impressive- not my sign. On the morning of my call, my sister-in-law saw a beautiful rainbow as she drove to Edmonton. That was my rainbow!
8. Famous Last Words
During dinner the night of the call, my husband said that he needed until Tuesday to get things organized at work. I couldn't believe he said that. I remember thinking, oh boy, don't make a big deal out of it...
9. Air Ambulance
Despite all of the time we had been spending in Edmonton, I had a feeling that I'd go by plane.
10. The Psalm
The morning of my call, my best friend was singing the psalm at church. It was all about faith and waiting for things to come and my friend thought of me the entire time she sang. By the time she got home from church, there was a message from me saying that I had gotten the call and was in Edmonton.
11. The Eagle
When my husband's Aunt heard news of my call, she was sitting on a patio on Vancouver Island and a bald eagle majestically flew right over top of them. Freedom!
12. 65_Red Roses
The documentary of Eva's lung transplant journey was shown on TV again. I knew it was scheduled for Monday night, but it also ran on Sunday night. I had lots of nurses come in and tell me they had just watched it and admired both Eva and I. I can relate to Eva and her transplant journey in so many ways.
Most Importantly:
I am not one to talk a lot about my relationship with God, but I can see how His plan was meant for me. Everything worked out perfectly. I was surrounded by those I love during my time of need. Somewhere, another family was saying their goodbyes and providing me with the most amazing gift I could ever receive. I am truly blessed.
ICU Memories
My ICU memories are a bit fuzzy, but according to others I remember most of it. The surgery lasted 7.5 hours and I was wheeled into ICU around 11:30pm on Sunday, July 25th. The surgery went well, and the only unnerving part was that the lungs didn't arrive until much later than expected. From what I understand, they arrived around 7:30pm.
My husband was the only person that saw me in transit with a huge group of staff and even more IVs and lines. He said I looked dead. That must have been very scary for him. After about fifteen minutes, he and my family were allowed to visit me. I was on sedated and on the ventilator at first. Even though unconscious, I was still able to shake my head or nod to questions, particularly if my husband asked them.
My husband said the first thing I did was try to rip out the ventilator. Instantly my hands reached for it. I was restrained to prevent this. I still bucked off my blankets and tried my best to get at it!
I remember being quite comfortable in ICU. The most difficult part was coming off of the ventilator. Prior to this, I had a bronchoscopy that I don't remember at all. There had been some secretions in the right lung, but they couldn't tell if they were old or new, so they took some samples and cleaned it out. When they started to decrease the sedation and the ventilator settings to see how I was breathing with less assistance, I started gagging. I have such a sensitive gag reflex. Ugh. At one point I was rolled slightly on my side and I felt the tubes move and I couldn't get them in a comfortable place again. They kept suffocating me. I was so glad to get them out! I wasn't able to speak for a while because my throat was so sore, though I tried to whisper. I also used a laminated alphabet sheet to communicate, but I could hardly see it, let alone point to the correct letter. I relied on people guessing what I was trying to say and just confirming it. My sister in law was best at this game.
I remember bringing my hand to my face and looking and my nails. "My fingernails are pink!" Apparently I had done this several times before my sister-in-law told me that they already know!
I was soon eating jello and ice chips.
I really enjoyed having my family around me. I am a people person and am used to having company in the hospital. I dozed in and out of conversations which helped me through. One of my side effects was hearing conversations that didn't exist. I would hear something, want to respond, and then open my eyes to see that everyone in the room was asleep. Or else there were different people in the room that were supposedly talking. Weird. I also remember being really hot.
As I became more aware, I was already trying to figure out the routine tests that the nurses were doing. I was fascinated with the art tap, a line into the artery in my wrist that was used to check my blood gas on a regular basis. I was also really interested in the cardiac pressure test.
I was soon able to sit up, and later my physio came to stand me up for the first time. It was amazing how much fluid I gained in such a short time- almost 10 kg or 25 pounds!
Soon more IVs were discontinued and I was eating my first meal, soup and a roast beef sandwich. One of the fabulous nurses had braided my hair for me and tidied up all of my med lines down to only two IV poles.
I also remember my surgeon coming in to check on me. I couldn't thank him enough. I asked him what my old lungs looked like when he took them out. He said that they were really heavy and dense. They were full of infection. There was so much scarring that all of the airways were hard. Basically, he was surprised they were doing anything for me. He also said that my old lungs hadn't been adhered to my chest wall, which made removing them easier. He also said my new lungs were perfect!
I had two of my six chest tubes removed before I left ICU. Didn't feel a thing! I also had a PCA pump hooked up so I could press a button to get a morphine boost on demand.
I was so impressed with my care. Not only is the ICU facility state-of-the-art and only one year old, but the staff were incredible. The nurses were close to my age, but they were so experienced and professional. I was so lucky to be in their care.
On Tuesday afternoon at 3:30pm I left ICU to go to the transplant step-down unit. Another hurdle cleared!
My husband was the only person that saw me in transit with a huge group of staff and even more IVs and lines. He said I looked dead. That must have been very scary for him. After about fifteen minutes, he and my family were allowed to visit me. I was on sedated and on the ventilator at first. Even though unconscious, I was still able to shake my head or nod to questions, particularly if my husband asked them.
My husband said the first thing I did was try to rip out the ventilator. Instantly my hands reached for it. I was restrained to prevent this. I still bucked off my blankets and tried my best to get at it!
I remember being quite comfortable in ICU. The most difficult part was coming off of the ventilator. Prior to this, I had a bronchoscopy that I don't remember at all. There had been some secretions in the right lung, but they couldn't tell if they were old or new, so they took some samples and cleaned it out. When they started to decrease the sedation and the ventilator settings to see how I was breathing with less assistance, I started gagging. I have such a sensitive gag reflex. Ugh. At one point I was rolled slightly on my side and I felt the tubes move and I couldn't get them in a comfortable place again. They kept suffocating me. I was so glad to get them out! I wasn't able to speak for a while because my throat was so sore, though I tried to whisper. I also used a laminated alphabet sheet to communicate, but I could hardly see it, let alone point to the correct letter. I relied on people guessing what I was trying to say and just confirming it. My sister in law was best at this game.
I remember bringing my hand to my face and looking and my nails. "My fingernails are pink!" Apparently I had done this several times before my sister-in-law told me that they already know!
I was soon eating jello and ice chips.
I really enjoyed having my family around me. I am a people person and am used to having company in the hospital. I dozed in and out of conversations which helped me through. One of my side effects was hearing conversations that didn't exist. I would hear something, want to respond, and then open my eyes to see that everyone in the room was asleep. Or else there were different people in the room that were supposedly talking. Weird. I also remember being really hot.
As I became more aware, I was already trying to figure out the routine tests that the nurses were doing. I was fascinated with the art tap, a line into the artery in my wrist that was used to check my blood gas on a regular basis. I was also really interested in the cardiac pressure test.
I was soon able to sit up, and later my physio came to stand me up for the first time. It was amazing how much fluid I gained in such a short time- almost 10 kg or 25 pounds!
Soon more IVs were discontinued and I was eating my first meal, soup and a roast beef sandwich. One of the fabulous nurses had braided my hair for me and tidied up all of my med lines down to only two IV poles.
I also remember my surgeon coming in to check on me. I couldn't thank him enough. I asked him what my old lungs looked like when he took them out. He said that they were really heavy and dense. They were full of infection. There was so much scarring that all of the airways were hard. Basically, he was surprised they were doing anything for me. He also said that my old lungs hadn't been adhered to my chest wall, which made removing them easier. He also said my new lungs were perfect!
I had two of my six chest tubes removed before I left ICU. Didn't feel a thing! I also had a PCA pump hooked up so I could press a button to get a morphine boost on demand.
I was so impressed with my care. Not only is the ICU facility state-of-the-art and only one year old, but the staff were incredible. The nurses were close to my age, but they were so experienced and professional. I was so lucky to be in their care.
On Tuesday afternoon at 3:30pm I left ICU to go to the transplant step-down unit. Another hurdle cleared!
Wednesday, August 11
Getting The Call
This is the first part of the retelling of my transplant journey.
Let me set the stage...
My husband and I had just returned home from a stay in Edmonton on Saturday afternoon (July 24th). My husband mowed the grass which was out of control and then made dinner. I was exhausted, and despite the piles of laundry and things to unpack, I went to bed early. That's something I rarely do, but I thought, if anything happens, all I need is a little sleep. My husband stayed up to watch TV. At 2:50am the phone rang. I didn't get to it in time, but I saw the Edmonton area code and caught the tail end of the message that was being left by the transplant coordinator. Instantly my cell began ringing and my husband answered and then passed it to me. It was The Call. They had lungs for me.
I sat at the top of the staircase and was shaking during the phone call. We discussed all of the details and then the flight team phoned right afterwards. My husband was like a whirlwind running past me from floor to floor, pulling together our transplant must-haves. My bag has been packed for six months, but I had a list of last-minute things to grab like the camera, iTouch and pills. For himself, my husband just rezipped his bag of dirty clothes that just made it back from Edmonton. Once that was organized, my husband started making phone calls to our family.
We were expecting the paramedics in about half an hour, but they arrived in about 15 minutes. It felt like the roar of the diesel engine could be heard for miles as they approached! They were super friendly, and my husband had actually worked with one of them in the past. One took my vitals while the other helped my husband take our bags to the truck. They patiently waited while I updated my facebook status through tears. I could hardly remember what words I had strung together, but I did alright. My status read:
JUST GOT THE CALL! The ambulance is here and I am off to Edmonton to start my next amazing adventure!!! Lung transplant, here I come!
July 25 at 3:31am
One more hug for the dog, and we were off! I had an IV started before the ambulance started moving, first try. We got instructions to go hot, so it was lights and sirens to the airport! The flight team was ready and waiting outside a small hangar. It was a small plane, and my husband could have reached across to touch both sides at the same time. Again, the flight crew of four were super friendly and professional. I was allowed one picture before take-off.
It was a really fast trip! It was an amazing view- out of the window to my right was a gorgeous full moon. On my left, there was a lightning storm in some far off clouds that lit up the night. We had a super smooth flight and a perfect landing.
The Edmonton EMS crew was waiting for me on the tarmac. They were also super nice. I sat on the stretcher and was loaded into a brand new ambulance. We checked into the hospital and went straight to the transplant floor for a work up and to wait.
It was procedure to be put into full isolation until we ruled out the usual superbugs, so everyone coming into my room had to mask, gown and glove.
We were soon joined by most of my family. My mom and her husband, my sister and brother in law, my sister and my dad. My husband's parents were already on the road and made the 5am ferry to mainland. They would arrive while I was in ICU.
The waiting part went better than I thought. We had lots of time for talk, for tears, for laughter, and for getting ready. As the surgery time grew closer, the more excited and the more nervous I felt. My husband did a great job to comfort and hold me. We met the surgeon and one of my transplant doctors came for a chat. The nurses were so caring and competent. I had a couple of IV bags started. I had bloodwork and tests and my last shower with that special soap. The funniest thing was trying to get out my earring. It's one of those hoops that you need pliers to open, but the best tool we had were kelly clamps. Let me tell you, it was the surgery before the surgery! My mom tried her best to pry it open, but it wouldn't cooperate. We taped it up instead.
I was given my first dose of immuno-suppressants. I begged to drink the whole cup of water. It had been about 20 hours since I had last had anything to eat or drink, so I was thirsty!
Then the moment came. At 4pm, I was ready to be taken to surgery. I hugged everyone and then my husband escorted me to the doors outside the operating room. It was a loooooooooong walk. Lots of tears. We said our 'I love yous' and then I was ready. And then we noticed I still had my glasses on so my husband had to come back and we had to part all over again. Then I was pushed through the big double doors.
Through the doors I was greeted by the anesthesiologist who reviewed a few things with me. I reminded him that I had a port-a-cath in my chest that I'd like to keep. Then through the next set of doors into the OR.
I tried not to look around. I was still crying silent tears but I was happy. I was ready. I saw a few people in green off to the side counting supplies on a table. I saw the two giant OR lights turned off above me. I transferred onto the table and chatted with the anesthesiologists and ensured them I was an Edmonton Oilers hockey fan. I thanked them and asked them to thank everyone else for me.
And that's all I remember with my old lungs.
Let me set the stage...
My husband and I had just returned home from a stay in Edmonton on Saturday afternoon (July 24th). My husband mowed the grass which was out of control and then made dinner. I was exhausted, and despite the piles of laundry and things to unpack, I went to bed early. That's something I rarely do, but I thought, if anything happens, all I need is a little sleep. My husband stayed up to watch TV. At 2:50am the phone rang. I didn't get to it in time, but I saw the Edmonton area code and caught the tail end of the message that was being left by the transplant coordinator. Instantly my cell began ringing and my husband answered and then passed it to me. It was The Call. They had lungs for me.
I sat at the top of the staircase and was shaking during the phone call. We discussed all of the details and then the flight team phoned right afterwards. My husband was like a whirlwind running past me from floor to floor, pulling together our transplant must-haves. My bag has been packed for six months, but I had a list of last-minute things to grab like the camera, iTouch and pills. For himself, my husband just rezipped his bag of dirty clothes that just made it back from Edmonton. Once that was organized, my husband started making phone calls to our family.
We were expecting the paramedics in about half an hour, but they arrived in about 15 minutes. It felt like the roar of the diesel engine could be heard for miles as they approached! They were super friendly, and my husband had actually worked with one of them in the past. One took my vitals while the other helped my husband take our bags to the truck. They patiently waited while I updated my facebook status through tears. I could hardly remember what words I had strung together, but I did alright. My status read:
JUST GOT THE CALL! The ambulance is here and I am off to Edmonton to start my next amazing adventure!!! Lung transplant, here I come!
July 25 at 3:31am
One more hug for the dog, and we were off! I had an IV started before the ambulance started moving, first try. We got instructions to go hot, so it was lights and sirens to the airport! The flight team was ready and waiting outside a small hangar. It was a small plane, and my husband could have reached across to touch both sides at the same time. Again, the flight crew of four were super friendly and professional. I was allowed one picture before take-off.
It was a really fast trip! It was an amazing view- out of the window to my right was a gorgeous full moon. On my left, there was a lightning storm in some far off clouds that lit up the night. We had a super smooth flight and a perfect landing.
The Edmonton EMS crew was waiting for me on the tarmac. They were also super nice. I sat on the stretcher and was loaded into a brand new ambulance. We checked into the hospital and went straight to the transplant floor for a work up and to wait.
It was procedure to be put into full isolation until we ruled out the usual superbugs, so everyone coming into my room had to mask, gown and glove.
We were soon joined by most of my family. My mom and her husband, my sister and brother in law, my sister and my dad. My husband's parents were already on the road and made the 5am ferry to mainland. They would arrive while I was in ICU.
The waiting part went better than I thought. We had lots of time for talk, for tears, for laughter, and for getting ready. As the surgery time grew closer, the more excited and the more nervous I felt. My husband did a great job to comfort and hold me. We met the surgeon and one of my transplant doctors came for a chat. The nurses were so caring and competent. I had a couple of IV bags started. I had bloodwork and tests and my last shower with that special soap. The funniest thing was trying to get out my earring. It's one of those hoops that you need pliers to open, but the best tool we had were kelly clamps. Let me tell you, it was the surgery before the surgery! My mom tried her best to pry it open, but it wouldn't cooperate. We taped it up instead.
I was given my first dose of immuno-suppressants. I begged to drink the whole cup of water. It had been about 20 hours since I had last had anything to eat or drink, so I was thirsty!
Then the moment came. At 4pm, I was ready to be taken to surgery. I hugged everyone and then my husband escorted me to the doors outside the operating room. It was a loooooooooong walk. Lots of tears. We said our 'I love yous' and then I was ready. And then we noticed I still had my glasses on so my husband had to come back and we had to part all over again. Then I was pushed through the big double doors.
Through the doors I was greeted by the anesthesiologist who reviewed a few things with me. I reminded him that I had a port-a-cath in my chest that I'd like to keep. Then through the next set of doors into the OR.
I tried not to look around. I was still crying silent tears but I was happy. I was ready. I saw a few people in green off to the side counting supplies on a table. I saw the two giant OR lights turned off above me. I transferred onto the table and chatted with the anesthesiologists and ensured them I was an Edmonton Oilers hockey fan. I thanked them and asked them to thank everyone else for me.
And that's all I remember with my old lungs.
Monday, August 9
Called. Transplanted. Discharged.
It happened! I got my call on Sunday, July 25th at 2:50am. I can hardly believe it! The past two weeks have been the most amazing of my life, hands down. The transformation, the recovery, and all the love I felt. After spending about 14 hours in ICU, I was transferred to the transplant step-down unit where I could see huge improvements every single day. I feel so lucky to be on this side of life. It was such a positive experience- challenges and all.
Today I was discharged! It was emotional. It was perfect. My three support people (my husband, mom and sister-in-law) and I celebrated with pizza and cupcakes at our hotel! My first round of transplant meds are done! Just finishing up some Tobi before checking my bedtime blood sugar and consulting my new sliding scale. I hope I sleep okay tonight. I have been so excited the last two nights that I barely slept. My nurse kept laughing that I was like a little kid at Christmas. A little kid that got the best present ever!
My wonderful husband provided updates over facebook over the last two weeks, but I want to record my journey here as well. I will try to add a bit every day.
I also heard that Cystic Gal got her transplant. Sending lots of positive healing vibes and love your way CG!
Today I was discharged! It was emotional. It was perfect. My three support people (my husband, mom and sister-in-law) and I celebrated with pizza and cupcakes at our hotel! My first round of transplant meds are done! Just finishing up some Tobi before checking my bedtime blood sugar and consulting my new sliding scale. I hope I sleep okay tonight. I have been so excited the last two nights that I barely slept. My nurse kept laughing that I was like a little kid at Christmas. A little kid that got the best present ever!
My wonderful husband provided updates over facebook over the last two weeks, but I want to record my journey here as well. I will try to add a bit every day.
I also heard that Cystic Gal got her transplant. Sending lots of positive healing vibes and love your way CG!
Friday, July 23
Summer Fun
It's been a pretty good week. This time leaving the hospital (two weeks ago), I didn't feel nearly as well as the previous time. I am feeling decent now as the shakiness is gone and my appetite continues to improve.
I have worked my way back to my full exercise program (except for the treadmill part- only at 15 of 30 minutes). For the first time in over a year, my muscles are sore from exercising! I love saying that! Usually my muscles are sore from coughing, not working out. What a great feeling!
I finally gave in and returned my Evergo concentrator. It was very hard to part with my reliable, convenient little buddy. However, 6LPM on pulse doesn't cut it anymore. I have dreaded switching back to tanks, but it was necessary. I now have a continuous high flow regulator and size E tanks. Those are the big awkward ones that are barely stable sitting upright. I have both a single and double cart to pull the tanks. Ugh.
I have spent the last couple of days hanging out with my sister-in-law, nephews and niece. I had a wonderful time with them, and we even went to a couple of fun attractions. I haven't been to places like that for such a long time. Armed with a wheelchair rental (with single oxygen tank holder) and the double cart, I had O2 for about three hours at a time. That's right, one hour per tank... what a pain! Anyways, my sister-in-law pushed me in the chair while the kids took turns pulling the O2 cart. They were such great helpers and the novelty didn't wear off! I went through 30 tanks this week! What a hassle! My sister-in-law never complained about hauling the tanks and chair in and out of the car. Plus, she is one of the very few people who understands my needs and is thoughtful about how she can make things easier for me. That means I can relax and enjoy myself! I am happy to spend so much time with them and have a change of scenery! Now it feels like Summer!
I have worked my way back to my full exercise program (except for the treadmill part- only at 15 of 30 minutes). For the first time in over a year, my muscles are sore from exercising! I love saying that! Usually my muscles are sore from coughing, not working out. What a great feeling!
I finally gave in and returned my Evergo concentrator. It was very hard to part with my reliable, convenient little buddy. However, 6LPM on pulse doesn't cut it anymore. I have dreaded switching back to tanks, but it was necessary. I now have a continuous high flow regulator and size E tanks. Those are the big awkward ones that are barely stable sitting upright. I have both a single and double cart to pull the tanks. Ugh.
I have spent the last couple of days hanging out with my sister-in-law, nephews and niece. I had a wonderful time with them, and we even went to a couple of fun attractions. I haven't been to places like that for such a long time. Armed with a wheelchair rental (with single oxygen tank holder) and the double cart, I had O2 for about three hours at a time. That's right, one hour per tank... what a pain! Anyways, my sister-in-law pushed me in the chair while the kids took turns pulling the O2 cart. They were such great helpers and the novelty didn't wear off! I went through 30 tanks this week! What a hassle! My sister-in-law never complained about hauling the tanks and chair in and out of the car. Plus, she is one of the very few people who understands my needs and is thoughtful about how she can make things easier for me. That means I can relax and enjoy myself! I am happy to spend so much time with them and have a change of scenery! Now it feels like Summer!
Friday, July 16
A Special Day
Last week in hospital there was one day that stood out as special. That's the best way to describe it. It was out of the ordinary because of a couple of things that happened...
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
Tuesday, July 13
Six Month Follow Up Appointment
It's been six months since I was listed for transplant and time for a routine visit. I saw the doctors and did a six-minute walk test. The doctors seemed surprised that I haven't had my call yet. They have experienced a bit of a drought and things have recently picked up again with three surgeries last week. That brings the year-to-date total up to 21. The doctors seem to think that I will get my call before my next follow-up appointment in three months.
I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.
In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?
I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.
In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?
Friday, July 9
Heading Home
Dreams of an early discharge didn't happen this week. I should be going home tomorrow though. It feels like it's been a long week because the hospital Internet has been down for a couple of days and it made me feel isolated!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Thursday, July 1
Happy Canada Day!
I spent my Canada Day in the hospital. I was admitted yesterday because I was short of breath, and doing more choking than coughing. I definitely need some IVs and lots of physio. It's been exactly one month since I was last discharged. This is getting very predictable! It's too bad because I had two very good weeks after I left the hospital last. And then I had two terrible weeks, and I blame the bowel obstructions for setting me back! I couldn't do physio or even cough properly while I had so much abdominal pain. Hopefully I will leave on home IVs early next week.
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
Sunday, June 27
It's Been a Week
It's been another one of those. Another week of bowel obstructions, pain, nausea, percocet and procedures. Hopefully this fix will last. In addition to my digestive problems, my breathing has gone downhill quickly, making this a very difficult week. I cancelled three visits with friends, which is disappointing. I did however, make it out to my friend's first transplant anniversary yesterday. It was tough to be social while being so short of breath, but I was determined to go. It was great to celebrate the miracle of new life with another CFer. It is such an amazing journey. Of course, the evening came with lots of jokes about his new lungs being those of Michael Jackson!
It was a sad week in the CF community with the passing of brave little Conner. His mom, Sarah, has been honest and open, sharing the most difficult moments of their lives. My heart goes out to their family. It isn't fair. Breathe easy Conner.
It was a sad week in the CF community with the passing of brave little Conner. His mom, Sarah, has been honest and open, sharing the most difficult moments of their lives. My heart goes out to their family. It isn't fair. Breathe easy Conner.
Tuesday, June 22
GearUp4CF
GearUp4CF is a unique CF fundraiser. Starting in Vancouver, 19 riders will cycle 1200 kilometres in nine days, through three mountain ranges to Banff. Talk about an opportunity to raise money and awareness for CF! Each rider was expected to raise $5000 for CF, and this year's group total is over $110,000! The ride has raised over half a million dollars since it began five years ago.
The coolest part is... Kitty Chavarie, one of the participants, is riding for ME! Our connection is an interesting one. Kitty lives in Chemainus, BC which is on Vancouver Island. Kitty was looking for someone with CF to dedicate her ride to. She knew somebody who knew my husband's parents, who also live on the Island. They met each other and the rest is history! There was even an article in one of the Island newspapers about it.
Kitty and I are facebook friends, but I can't wait to meet her in person. It takes a special kind of person to take on this kind of challenge. I hope to cheer her on as she crosses the finish line on June 27th!
For more information about the ride, you can visit their website at gearup4cf.org or the blog at gearup4cf2010.blogspot.com. The riders are blogging as they go, so you can follow their progress. They are already on their way!
The coolest part is... Kitty Chavarie, one of the participants, is riding for ME! Our connection is an interesting one. Kitty lives in Chemainus, BC which is on Vancouver Island. Kitty was looking for someone with CF to dedicate her ride to. She knew somebody who knew my husband's parents, who also live on the Island. They met each other and the rest is history! There was even an article in one of the Island newspapers about it.
Kitty and I are facebook friends, but I can't wait to meet her in person. It takes a special kind of person to take on this kind of challenge. I hope to cheer her on as she crosses the finish line on June 27th!
For more information about the ride, you can visit their website at gearup4cf.org or the blog at gearup4cf2010.blogspot.com. The riders are blogging as they go, so you can follow their progress. They are already on their way!
Monday, June 21
Having a Moment Here...
This afternoon it hit me. The whole dependence thing. I know I am so lucky to have an awesome husband that cares so much and other family members that are willing to help out. But it's still hard to ask for help. Usually I just get in a routine and don't think about it too much, but today it came to the forefront. I need someone to take me to clinic on Wednesday. Usually my husband goes to work super early on those days and then comes home to pick me up, we go to clinic, he drops me back off, and then he returns to work. He got a recent promotion (yay!) but that means there's more work to do! He's been so busy lately that I feel bad every time I need to take him away from work to help me. But I can't leave the house alone. It's too hard.
I've already been active on the list for over five months. Nobody believed it would take so long, and I think the waiting is getting to us. It means that quite a few family members have changed the way they live for me. No more vacations, no more leaving the house without a cell phone, and no more fun. Okay, maybe I'm exaggerating a bit! I appreciate it so much, but I feel bad that I just take, take, take. And I know when I get my transplant, I'll need them even more.
I know I'd do the same for one of them, but that doesn't help the current situation. I think the bottom line is that I'm ready for transplant already!
Ah, nothing like a little venting to make myself feel better. Now back to my usual cheery self!
I've already been active on the list for over five months. Nobody believed it would take so long, and I think the waiting is getting to us. It means that quite a few family members have changed the way they live for me. No more vacations, no more leaving the house without a cell phone, and no more fun. Okay, maybe I'm exaggerating a bit! I appreciate it so much, but I feel bad that I just take, take, take. And I know when I get my transplant, I'll need them even more.
I know I'd do the same for one of them, but that doesn't help the current situation. I think the bottom line is that I'm ready for transplant already!
Ah, nothing like a little venting to make myself feel better. Now back to my usual cheery self!
Saturday, June 19
What a Week!
Phew! I'm glad this week is behind me now! My problems started on Tuesday, when I developed some severe stomach pains in the morning. I don't know what they were from, but they were the most intense stomach cramps I'd ever had. I couldn't eat, couldn't do physio and couldn't focus on anything. I didn't sleep much that night. By Wednesday afternoon the pain hadn't let up at all and I saw my CF doctor who figured it out pretty quickly.
Apparently, it's a common CF issue. It's never happened to me before, and I still can't believe it hurt so much. After some percocets for pain and a couple of procedures, my bowels seem to be working again. I am eating again and doing physio. I hope to return to my workouts on Monday.
In more exciting news, Piper got her lung transplant! I am so excited for her. She seems to be improving in leaps and bounds. Go Piper!
In other tx news, one of the people from my Edmonton group got their call. Unfortunately, it turned out to be a false call. The surgery was cancelled right before it was scheduled to begin. I can only imagine how devastating that would be... but better to hold out for the right set of lungs. So my friend is back to the waiting game. Hopefully her next call will be soon!
Apparently, it's a common CF issue. It's never happened to me before, and I still can't believe it hurt so much. After some percocets for pain and a couple of procedures, my bowels seem to be working again. I am eating again and doing physio. I hope to return to my workouts on Monday.
In more exciting news, Piper got her lung transplant! I am so excited for her. She seems to be improving in leaps and bounds. Go Piper!
In other tx news, one of the people from my Edmonton group got their call. Unfortunately, it turned out to be a false call. The surgery was cancelled right before it was scheduled to begin. I can only imagine how devastating that would be... but better to hold out for the right set of lungs. So my friend is back to the waiting game. Hopefully her next call will be soon!
Thursday, June 10
The Hard Truth
Time to buckle down and write about one of the things that bothers me the most about my current situation. I have done a lot of new things over the last two years, thanks to my declining lung function. Most of those things I have done with little complaint, like start to wear oxygen in public or have frequent courses of IVs. Sure, all of that stuff is annoying, but I just do it.
I don't care who sees me sick or tired or coughing. But when I think about my two nephews and niece seeing me sick, it really bothers me. I don't want their memories of me to be ones where I'm sick. My niece is four and she probably doesn't remember me before I was sick. When her mom says they're going to see Sandy, she asks if I'm at home or at the hospital. If I'm at the hospital, then she asks what they are going to bring me for lunch. She knows the routine. She knows how to make the hospital bed go up and down and how to turn on the tv. She knows that I always have cookies or gummies or pudding cups for dessert. And she knows that I will proudly display any artwork she gives me.
The boys are older, nine and seven, and I know they remember me before I got sick. I want them to remember how I used to be fun and creative and full of energy. That I never said no to joining in on a game of pretend. That I would run and play outside until it was bedtime. That I would climb up the stairs to tuck them into bed. How can I be sure that they don't lose these memories?
During my last hospital stay, my sister and brother in law and my nephews and niece were all together with my husband and I for a visit in my room. We joked about what kind of transplant everyone needed (with mine being obvious!) and what kind of person they were. For example, my younger nephew is a natural athlete and loves all sports, so he became "Sporty Boy." Guess what my nicknames were? "Sick Girl" and "Hospital Girl." Sure, I laughed because it was funny, and true. We all roared with laughter. But I hope that my nicknames change soon.
Out of all the things that have come my way in the last two years, this one is hard on me. I know that my nephews and niece can learn things about this experience, like helpfulness and compassion and empathy. I know that they will be better for it. But it's still hard.
I don't care who sees me sick or tired or coughing. But when I think about my two nephews and niece seeing me sick, it really bothers me. I don't want their memories of me to be ones where I'm sick. My niece is four and she probably doesn't remember me before I was sick. When her mom says they're going to see Sandy, she asks if I'm at home or at the hospital. If I'm at the hospital, then she asks what they are going to bring me for lunch. She knows the routine. She knows how to make the hospital bed go up and down and how to turn on the tv. She knows that I always have cookies or gummies or pudding cups for dessert. And she knows that I will proudly display any artwork she gives me.
The boys are older, nine and seven, and I know they remember me before I got sick. I want them to remember how I used to be fun and creative and full of energy. That I never said no to joining in on a game of pretend. That I would run and play outside until it was bedtime. That I would climb up the stairs to tuck them into bed. How can I be sure that they don't lose these memories?
During my last hospital stay, my sister and brother in law and my nephews and niece were all together with my husband and I for a visit in my room. We joked about what kind of transplant everyone needed (with mine being obvious!) and what kind of person they were. For example, my younger nephew is a natural athlete and loves all sports, so he became "Sporty Boy." Guess what my nicknames were? "Sick Girl" and "Hospital Girl." Sure, I laughed because it was funny, and true. We all roared with laughter. But I hope that my nicknames change soon.
Out of all the things that have come my way in the last two years, this one is hard on me. I know that my nephews and niece can learn things about this experience, like helpfulness and compassion and empathy. I know that they will be better for it. But it's still hard.
Tuesday, June 8
The Wait Continues
The last few days have been pretty good. I am getting my strength back and I am feeling better than usual, thanks to my two-week hospital stay. The weather this weekend was pleasant and my husband did a bunch a yardwork while I supervised from my lawn chair. Everything is green now and it's such a welcomed change!
I checked a couple of things off my list this week. I had my hearing tested, and I'm a bit surprised that the results are normal. I have been asking people to repeat themselves much more often lately. Perhaps it's due to my lack of attention span, thanks to the transplant wait. My husband is experiencing it too. We can't concentrate on things even when we want to. I love to read but I haven't touch the stack of books waiting for me. I love to scrapbook, but a few minutes here and there is all I can manage. I lose my train of thought easily and I drift off mid-conversation. Whoops, I just did it now! Back to my list! I also had a vaccination yesterday, pneumo-p. That's the last shot I need before transplant! Check!
I checked a couple of things off my list this week. I had my hearing tested, and I'm a bit surprised that the results are normal. I have been asking people to repeat themselves much more often lately. Perhaps it's due to my lack of attention span, thanks to the transplant wait. My husband is experiencing it too. We can't concentrate on things even when we want to. I love to read but I haven't touch the stack of books waiting for me. I love to scrapbook, but a few minutes here and there is all I can manage. I lose my train of thought easily and I drift off mid-conversation. Whoops, I just did it now! Back to my list! I also had a vaccination yesterday, pneumo-p. That's the last shot I need before transplant! Check!
Tuesday, June 1
There's No Place Like Home!
I was discharged yesterday afternoon and it feels great to be back home. I must say that this was the smoothest hospitalization ever. No disasters and no roommates! Two weeks is still a long time to be away from home though. Home cooked meals have never tasted so good! I am happy to unpack, see my dog and get back into the swing of things!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
Sunday, May 30
Great Strides
Today was our Great Strides walk. I was so excited for the walk this year. I have been participating in the walk long before it was called Great Strides. My friends and family have been walking along with me, particularly these last few years. Last year, my husband as team captain stepped up the fundraising side of things. This year we continued to build on that. I'm SO proud to say that...
Team Smith raised over $23,000 for CF!!!
Team Smith was the #1 team in our city!!!
Of the top walkers, my sister & brother in law were #2 in our city!!!
Team Smith was the #10 top team in Canada!!!
38 people walked for me!!!
Team Smith had over 200 sponsors!!!
Despite the cold weather (yes, it was snowing early this morning) we had a wonderful turnout. Everyone went above and beyond to raise money and awareness for CF. I am moved to tears when I think about how many people care about me and are trying to help raise money to find a cure for CF. I don't know what I did to deserve so many wonderful people in my life. It makes me feel happy and loved! The walk always feels like my birthday- a special day just for me! I couldn't ask for more- all of my favorite people together in one place!
It's also special that we actually know some brilliant CF researchers who are making a difference in CF... and have personally helped me with their research. It is so exciting to hear what's happening firsthand and to see the "great strides" they have made, particularly in the microbiology area. It is fascinating!!!
Looking forward to the day when CF stands for Cure Found!
Team Smith raised over $23,000 for CF!!!
Team Smith was the #1 team in our city!!!
Of the top walkers, my sister & brother in law were #2 in our city!!!
Team Smith was the #10 top team in Canada!!!
38 people walked for me!!!
Team Smith had over 200 sponsors!!!
Despite the cold weather (yes, it was snowing early this morning) we had a wonderful turnout. Everyone went above and beyond to raise money and awareness for CF. I am moved to tears when I think about how many people care about me and are trying to help raise money to find a cure for CF. I don't know what I did to deserve so many wonderful people in my life. It makes me feel happy and loved! The walk always feels like my birthday- a special day just for me! I couldn't ask for more- all of my favorite people together in one place!
It's also special that we actually know some brilliant CF researchers who are making a difference in CF... and have personally helped me with their research. It is so exciting to hear what's happening firsthand and to see the "great strides" they have made, particularly in the microbiology area. It is fascinating!!!
Looking forward to the day when CF stands for Cure Found!
Saturday, May 29
Sleep Study Results
Yay! I am feeling a lot better. It looks like I could go home on Monday after two weeks of antibiotics. I see lots of improvement- less cough, less production, less SOB and increased appetite.
I had that sleep study the other night. It was a snoresat, not true sleep study like they do in a sleep clinic. It was less invasive than I thought. I wore a nasal cannula to record each breath. I think the preference is to do the test with no supplemental O2, but that's a stretch for me, so we turned down my O2 to 3LPM instead. I ended up wearing two nasal cannulas, which is particularly attractive. I had a sat monitor taped to one of my fingers. I also had a disc with a ball in it taped to the front of my neck. The ball moved according to my position (sitting, laying on my back or side, etc.) and would vibrate with snoring. All of this information was recorded. As it turns out, no sleep problems were detected. I'm not surprised. My suspicion is that I stop breathing when I'm really congested at night. I think I cough up in my sleep and then choke a bit until I can clear it. At least it's not a problem with my sleep.
I have arranged a day pass for tomorrow morning. It's our Great Strides walk! In Canada, all the walks are coordinated across the country to take place on Sunday, May 30th (always the last Sunday in May). I am SO excited to see all of my friends! And I'm so proud of all of the fundraising my team has done. Once it's final, I'll reveal how we did! Now if only it would stop snowing...
I had that sleep study the other night. It was a snoresat, not true sleep study like they do in a sleep clinic. It was less invasive than I thought. I wore a nasal cannula to record each breath. I think the preference is to do the test with no supplemental O2, but that's a stretch for me, so we turned down my O2 to 3LPM instead. I ended up wearing two nasal cannulas, which is particularly attractive. I had a sat monitor taped to one of my fingers. I also had a disc with a ball in it taped to the front of my neck. The ball moved according to my position (sitting, laying on my back or side, etc.) and would vibrate with snoring. All of this information was recorded. As it turns out, no sleep problems were detected. I'm not surprised. My suspicion is that I stop breathing when I'm really congested at night. I think I cough up in my sleep and then choke a bit until I can clear it. At least it's not a problem with my sleep.
I have arranged a day pass for tomorrow morning. It's our Great Strides walk! In Canada, all the walks are coordinated across the country to take place on Sunday, May 30th (always the last Sunday in May). I am SO excited to see all of my friends! And I'm so proud of all of the fundraising my team has done. Once it's final, I'll reveal how we did! Now if only it would stop snowing...
Tuesday, May 25
More of the Same
This is a been a pretty routine hospital stay so far. I'm on Tobra and Ceftaz plus physio three times a day. I am feeling much better than I was last Monday when I was admitted. I'm no longer short of breath at rest, and my breathing is improving with exertion too. I am hoping to go to the gym soon and spend some time on the treadmill. Maybe I'll get out by the weekend or early next week.
My husband has been spending tons of time with me, which makes being stuck here much easier. It was the long weekend so he got to spend even more time with me! I've had a few other visitors too, which is great. Everyone had been making comments that maybe I would get The Call over the long weekend... but nothing. I think there's a common perception that holidays and special occasions are big transplant days, but I don't buy it.
I am having that sleep study done tonight. I don't know exactly what to expect, but a RT will come by and set things up. I'm just glad I'm getting it done as an inpatient. I'm sure it's saving me a few trips to the hospital!
My husband has been spending tons of time with me, which makes being stuck here much easier. It was the long weekend so he got to spend even more time with me! I've had a few other visitors too, which is great. Everyone had been making comments that maybe I would get The Call over the long weekend... but nothing. I think there's a common perception that holidays and special occasions are big transplant days, but I don't buy it.
I am having that sleep study done tonight. I don't know exactly what to expect, but a RT will come by and set things up. I'm just glad I'm getting it done as an inpatient. I'm sure it's saving me a few trips to the hospital!
Wednesday, May 19
CF Friends
Great news- James got his lungs! It's so exciting to be part of the online CF community and hear about others getting transplants and starting a new life. I know I've benefited from the support of others going through the same stages, feelings and issues that I am. It means a lot to know that I'm not alone and that my current life isn't so strange!
I have been expanding my CF network at home too. Facebook has been a great tool to chat with others that I may only see once a year at clinic or at a fundraiser. Even though I'm a regular at clinic now, it's not a great place to chat and get to know people. Facebook works much better! There's even a couple of CFers that are going through the tx process too, but I am ahead of them all at this point. There are also CFers that are post-transplant that I am learning so much from. I know I'm lucky to have their guidance and encouragement.
I also have two childhood CFer friends that I don't see on a regular basis, but catch up with every now and then. I have been in touch with them both lately. Can't say the news was good though. One of them is also on the road to transplant after a rapid decline. The other has been diagnosed with cancer. I know both of them will do well and be healthy again, but it makes me mad. Isn't CF enough?!?
I have been expanding my CF network at home too. Facebook has been a great tool to chat with others that I may only see once a year at clinic or at a fundraiser. Even though I'm a regular at clinic now, it's not a great place to chat and get to know people. Facebook works much better! There's even a couple of CFers that are going through the tx process too, but I am ahead of them all at this point. There are also CFers that are post-transplant that I am learning so much from. I know I'm lucky to have their guidance and encouragement.
I also have two childhood CFer friends that I don't see on a regular basis, but catch up with every now and then. I have been in touch with them both lately. Can't say the news was good though. One of them is also on the road to transplant after a rapid decline. The other has been diagnosed with cancer. I know both of them will do well and be healthy again, but it makes me mad. Isn't CF enough?!?
Monday, May 17
Some Relief
I haven't been feeling good for weeks and it looks like today I will get some relief. I am being admitted once a bed becomes available this afternoon. I was wondering what it would take to get treated! Yesterday, I went to the hospital to have my routine port flush and the nurses were super concerned about me. A couple of phone calls later, the wheels were set in motion!
This past weekend was a tough one. I have been extremely short of breath even though I've bumped my concentrator up to 9.5 LPM. My resting heart rate is around 110 and I am constantly exhausted. I can't keep this up much longer. I need those IVs!
Here's hoping I get a private room!
This past weekend was a tough one. I have been extremely short of breath even though I've bumped my concentrator up to 9.5 LPM. My resting heart rate is around 110 and I am constantly exhausted. I can't keep this up much longer. I need those IVs!
Here's hoping I get a private room!
Saturday, May 15
Good News Story
I was thrilled to see this story make front page news! An eight year old with CF got his lung transplant at my tx centre! I have to admit that I had been pretty worried about him. Pediatric transplants are much less common and I know that donors are harder to come by. I am so happy that he's doing well.
To read the full story click here or here.
To watch a 2 minute video clip, click here.
To read the full story click here or here.
To watch a 2 minute video clip, click here.
Tuesday, May 11
GI Tests
I was booked for two tests today, a GI Motility Study and a GI Impedance Study. I prepared for the tests by not eating or drinking for six hours (so basically since bedtime). For the first test they thread a big tube down my nose to my stomach. It has lots of sensors and creates a picture of my esophagus and by swallowing sips of water they can see how well everything is working, including the two sphincters. Well, the nurse was a little cold and robotic. She rammed the tube (the size of my O2 tubing) quickly down. It was very uncomfortable, and I immediately begin gagging, crying and throwing up. I think she's used to people dry heaving on empty stomachs, so she had nothing ready for when I brought up loads of mucus that I must have coughed up and swallowed overnight. I threw up all over myself repeatedly until she finally gave me a towel. Ugh, it was awful and I couldn't help myself. After about 20 minutes I stopped coughing and could start settling down. I think the nurse panicked and the most experienced tech stepped in to continue. I did all of the swallows required, no problem. Pulling the tube was unpleasant, but it was out in a couple of seconds.
After a bit of recovery time, it was time for the next test. A thin tube was placed down my nose and positioned to sit above my stomach. The tech did a much better job inserting the tube, plus the tube was much smaller, so there were no issues. This tube will stay for 24 hours and is attached to a small computer that will record the pH, which determines if there's any reflux. I just need to press a button when I sit/lay down, start/stop eating, and if I cough, burp or have heartburn. It's a little uncomfortable because I can feel something stuck in the back of my throat every time I swallow. As long as I don't think about it too much, I'm okay with it. I had a wicked headache afterward and needed a nap. Looking forward to having the tube out tomorrow!!!
My clinic last week went much better and I left feeling like we had some solid possibilities to explore. First of all, I stopped the Spiriva. Secondly, I started an inhaled steriod, Symbicort. Thirdly, it looks like I have some form of sleep apnea. My husband has noticed that I stop breathing at night, which has developed in the last month or two. I will be booked for a sleep study at some point- I'm not breathing well to begin with, so sleep apnea is not a good thing! I continued to turn down the anti-anxiety meds, although we spent a lot of time talking about them. I did PFTs as well. My FEV1 was 27% and my FVC was 42%. No surprises there, that's what I expected to see!
After a bit of recovery time, it was time for the next test. A thin tube was placed down my nose and positioned to sit above my stomach. The tech did a much better job inserting the tube, plus the tube was much smaller, so there were no issues. This tube will stay for 24 hours and is attached to a small computer that will record the pH, which determines if there's any reflux. I just need to press a button when I sit/lay down, start/stop eating, and if I cough, burp or have heartburn. It's a little uncomfortable because I can feel something stuck in the back of my throat every time I swallow. As long as I don't think about it too much, I'm okay with it. I had a wicked headache afterward and needed a nap. Looking forward to having the tube out tomorrow!!!
My clinic last week went much better and I left feeling like we had some solid possibilities to explore. First of all, I stopped the Spiriva. Secondly, I started an inhaled steriod, Symbicort. Thirdly, it looks like I have some form of sleep apnea. My husband has noticed that I stop breathing at night, which has developed in the last month or two. I will be booked for a sleep study at some point- I'm not breathing well to begin with, so sleep apnea is not a good thing! I continued to turn down the anti-anxiety meds, although we spent a lot of time talking about them. I did PFTs as well. My FEV1 was 27% and my FVC was 42%. No surprises there, that's what I expected to see!
Tuesday, May 4
Still Snowing
Tomorrow I'm heading back to clinic for some resolution I hope! I am still disappointed with my last visit. Like I've said before, I think my team is amazing and very caring, but I felt like I wasn't heard. I went in because I saw a change- a big decrease in my quality of life because of my shortness of breath- and I feel like it was treated as my inability to cope. I don't think it helps when my sats at rest look normal. They always look normal which is very deceptive. But at this point it's not about the numbers. I don't even do PFTs if I'm not feeling well. The information from the PFTs doesn't help treat me anymore and it's not worth the effort on my part. Anyways, I'm looking forward to a better visit with more action tomorrow!
Despite the snowy and windy winter weather, I have had a better week so far. A couple of friends have come over to visit, which has been fun. I'm at the point where it's much easier for people to come to me so I don't have to leave the house. Plus I don't have to change out of my sweats that way! My rule is I can wear sweats at home but not out (walking the dog and hospital stays are the exceptions). It sound silly but it makes me feel more normal.
I fought off a cold last week. I'm so glad it went away without causing too many problems. I just took it easy and it disappeared. It's funny, 'taking it easy' compared to my normal daily routine now look exactly the same. Oh well!
Despite the snowy and windy winter weather, I have had a better week so far. A couple of friends have come over to visit, which has been fun. I'm at the point where it's much easier for people to come to me so I don't have to leave the house. Plus I don't have to change out of my sweats that way! My rule is I can wear sweats at home but not out (walking the dog and hospital stays are the exceptions). It sound silly but it makes me feel more normal.
I fought off a cold last week. I'm so glad it went away without causing too many problems. I just took it easy and it disappeared. It's funny, 'taking it easy' compared to my normal daily routine now look exactly the same. Oh well!
Thursday, April 29
Just Another Day
I decided to pass on the anti-anxiety drug for now. I am trying something else for two weeks until I go back to clinic. This is an inhaled med that's usually used in COPD to decrease gas trapping. I don't think it's well studied in CF, but if it reduces the gas trapping in my lungs it could make a difference in how I feel. I have tried this drug once in the past and didn't notice any difference, but I'm willing to give it another go.
It's been snowing like crazy here for a couple of days, so I haven't been out much. Even my dog is pretending that he doesn't need to go outside! I think I need to get out for a change of scenery this evening when my husband gets home. My days are so routine that they're getting boring.
I have lots of things that I'd like to do around the house, but I have little energy for anything. By the time I complete my morning routine it's 2pm and time for lunch. I used to get a couple of things done after lunch, but not lately. I don't even have the motivation to do the things I enjoy, like reading or scrapbooking. I am exhausted and ready to crash mid-afternoon. Working out has also become more difficult since I am very SOB. Hopefully things will start to improve!
It's been snowing like crazy here for a couple of days, so I haven't been out much. Even my dog is pretending that he doesn't need to go outside! I think I need to get out for a change of scenery this evening when my husband gets home. My days are so routine that they're getting boring.
I have lots of things that I'd like to do around the house, but I have little energy for anything. By the time I complete my morning routine it's 2pm and time for lunch. I used to get a couple of things done after lunch, but not lately. I don't even have the motivation to do the things I enjoy, like reading or scrapbooking. I am exhausted and ready to crash mid-afternoon. Working out has also become more difficult since I am very SOB. Hopefully things will start to improve!
Monday, April 26
Clinic
My sister-in-law took me to clinic today as my husband is super busy today at work. It was great to have her company. It's funny that she's helped me in the gym, get my port accessed, etc. while I was in Edmonton for my six-week physio program, but she hasn't been to my regular clinic yet. So today was a first for us.
I went into clinic today because I have been really short of breath. I'm SOB all of the time, even at rest. It's exhausting. I have been off IVs less than three weeks and I feel like I've gone downhill. I'm not coughing more or coughing up more, which makes my shortness of breath a bit mysterious. I wasn't expecting to be admitted today, but I was thinking maybe some home IVs would help or something different... I don't know. Maybe I could try some inhaled steroids or maybe there's something else out there.
I wasn't expecting what I was given, that's for sure. It was a prescription for an anti-anxiety drug. Don't get me wrong, I believe that drugs can help control symptoms and I'm not adverse to trying something new if there's a reason. But I don't feel like anxiety is my problem, I am short of breath! All I wanted to know is if this is my new normal, and it sounds like it is. It just seems like I got to this new point very quickly and I'd like to try to reverse it before I accept it!
I need to think this over and decide what I'm going to do. I am leaning towards trying to deal with this on my own before using the anti-anxiety meds. I've already made it this far without them!
This is not what I was expecting today, that's for sure! The first thing I did when I got home was repack my transplant bag for good measure!
I went into clinic today because I have been really short of breath. I'm SOB all of the time, even at rest. It's exhausting. I have been off IVs less than three weeks and I feel like I've gone downhill. I'm not coughing more or coughing up more, which makes my shortness of breath a bit mysterious. I wasn't expecting to be admitted today, but I was thinking maybe some home IVs would help or something different... I don't know. Maybe I could try some inhaled steroids or maybe there's something else out there.
I wasn't expecting what I was given, that's for sure. It was a prescription for an anti-anxiety drug. Don't get me wrong, I believe that drugs can help control symptoms and I'm not adverse to trying something new if there's a reason. But I don't feel like anxiety is my problem, I am short of breath! All I wanted to know is if this is my new normal, and it sounds like it is. It just seems like I got to this new point very quickly and I'd like to try to reverse it before I accept it!
I need to think this over and decide what I'm going to do. I am leaning towards trying to deal with this on my own before using the anti-anxiety meds. I've already made it this far without them!
This is not what I was expecting today, that's for sure! The first thing I did when I got home was repack my transplant bag for good measure!
Saturday, April 24
In the News!
My speech went very well at the media event for National Organ and Tissue Donor Awareness Week. I found it exhausting of course, but so worth it! I chose to sit while giving my speech, but it was still difficult to talk for four minutes. At least I didn't have to stop for a crazy coughing fit. I recognized a couple of faces in the crowd, but unfortunately the lung tx doctors were either stuck in clinic or stuck in Europe with no flight home.
After my speech I was interviewed and had several people form the crowd come up to me with encouragement, which is sweet. I felt really good about how things went.
I saw clips from the event aired on three different channels. The CBC Edmonton Evening News actually showed part of my speech, my interview and repeated my donor awareness message!!! I am thrilled!
If you'd like to view it, please skip ahead to the Health section at 24:25 mins:
http://www.cbc.ca/video/#/News/Local_News/Edmonton/ID=1474135146
After my speech I was interviewed and had several people form the crowd come up to me with encouragement, which is sweet. I felt really good about how things went.
I saw clips from the event aired on three different channels. The CBC Edmonton Evening News actually showed part of my speech, my interview and repeated my donor awareness message!!! I am thrilled!
If you'd like to view it, please skip ahead to the Health section at 24:25 mins:
http://www.cbc.ca/video/#/News/Local_News/Edmonton/ID=1474135146
Monday, April 19
Happy National Organ and Tissue Donor Awareness Week
My husband and I are back in Edmonton today. I have been asked to share my story at a media event at U of A Hospital for National Organ and Tissue Donor Awareness Week. This week has special importance to me now! I am so flattered to be asked to participate, and I will gladly fill my obligation to spread awareness. There are four of us that were asked to speak (two pre- as well as two post-transplant people). I did a test run today and will practice my speech more this evening. I want to get it just right so that people are compelled to think about becoming an organ donor! I will share any coverage that comes from it!
We finally have some super sunny warm weather, which feels great! I have dug out my capris and shorts which is a nice change. At least a couple of things still fit... I have gained 10kg since two summers ago. I know that it's a good thing!
And it's great to hear that someone else got their new lungs! Go Jess!
We finally have some super sunny warm weather, which feels great! I have dug out my capris and shorts which is a nice change. At least a couple of things still fit... I have gained 10kg since two summers ago. I know that it's a good thing!
And it's great to hear that someone else got their new lungs! Go Jess!
Monday, April 12
First Follow-Up Appointment
I had my first follow-up appointment with my transplant doctors today. It's hard to believe that my six-week program finished two months ago! We didn't think I'd need this appointment, but no lungs yet. It was nice to chat with the staff and visit some of the post-transplant people we know in the gym. Apparently my centre has done 11 lung transplants this year, so there were three that we didn't hear about. It sounds like I'm second or third in line for my blood type and size- so about the same as before.
All of last week I did my full workout routine, which felt great after being sick. I am already back up to 30 minutes on the treadmill. My motivation to exercise and stay fit for transplant has been really good. This is the most motivated I've ever been to work out!
I ended my IVs on Wednesday as planned at clinic. I also got to do this liver scan as part of a study, and my liver would be considered normal (not hard and damaged). That was good news.
Now that I have more energy than usual, I think I'm going to try to meet up with some friends this week. I would love to go for a sushi lunch (before it's forbidden) downtown with a friend , plus catch up with some friends on mat leave and lunch with my sister-in-law. That sounds ambitious but I'll try!
All of last week I did my full workout routine, which felt great after being sick. I am already back up to 30 minutes on the treadmill. My motivation to exercise and stay fit for transplant has been really good. This is the most motivated I've ever been to work out!
I ended my IVs on Wednesday as planned at clinic. I also got to do this liver scan as part of a study, and my liver would be considered normal (not hard and damaged). That was good news.
Now that I have more energy than usual, I think I'm going to try to meet up with some friends this week. I would love to go for a sushi lunch (before it's forbidden) downtown with a friend , plus catch up with some friends on mat leave and lunch with my sister-in-law. That sounds ambitious but I'll try!
Monday, April 5
Transplant on My Mind
I had a nice Easter weekend and got to spend time with our family. My husband single-handedly prepared an amazing meal and got the house ready for company. I am finally starting to feel a little better everyday, which is a relief. I was supposed to complete my home IVs last Wednesday, but I didn't feel any better. Instead, we switched the Cefepime to Ceftaz for another week, keeping Tobra the same. I'm due back at clinic on Wednesday and I'm anxious to get rid of the IVs and port needle. The hospital switched needle brands and this kind has no cushion. It just sticks out and has gone interstitial once already.
I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.
Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!
I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.
Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!
Saturday, March 27
Eva
An inspiration to so many people, especially those of us with CF. Through her documentary and her blog, she has taught us about CF, organ donation, and most importantly, about living life to the fullest.
Thank you for sharing your life with us.
Breathe easy Eva.
Thank you for sharing your life with us.
Breathe easy Eva.
Thursday, March 25
Heading Home!
I am heading home tomorrow. I will finish off my IVs at home and head back to clinic on Wednesday for follow-up. It's always exciting to know that I'm going to be discharged. I can't wait to live with my husband again, see my dog and return to my routine at home. I never sleep much at the hospital either, so I need to catch up!
My sister left on a month-long trip yesterday. I've got to admit that I'm a little surprised that she decided to travel half-way across the world while I'm on the transplant list. I don't even know if that was much of a factor, but I wasn't about to interfere with her decision to travel. I think she didn't like leaving with me in the hospital, but I don't know if she's considered that I might have new lungs the next time I see her. She says she'll fly home if I get the call... but the logistics of that are overwhelming. No point worrying about it though.
My sister left on a month-long trip yesterday. I've got to admit that I'm a little surprised that she decided to travel half-way across the world while I'm on the transplant list. I don't even know if that was much of a factor, but I wasn't about to interfere with her decision to travel. I think she didn't like leaving with me in the hospital, but I don't know if she's considered that I might have new lungs the next time I see her. She says she'll fly home if I get the call... but the logistics of that are overwhelming. No point worrying about it though.
Monday, March 22
Here We Go Again
Over the last two weeks I have experienced a slow progression that's landed me back in the hospital. I have been very SOB and I've been having chest/lung pain. That's unusual for me, so I've been pretty concerned. We haven't figured it all out yet, but we've been crossing off possible causes. High Co2? Nope, my blood gas results are similar to last time. Collapsed lobe? Nope, my xray looks about the same. Heart problems? Nope, things are good in that department too. I am on IV Tobra and Cefepime and I hope it'll kick in soon.
In other hospital news, I was moved from my private room to a semi-private this afternoon. Ugh. Of course, my roommate is all kinds of crazy and I have NO sympathy for people who wreck their lungs by smoking. I'll save you the rant, but the smell of the cigarette smoke hanging in the air is an issue. I have no luck with roommates. Or with sharing bathrooms with five other people.
Enough about me already.
I am thrilled to hear all of the recent news in the CF blog community... CFers getting new lungs, CFers having dry runs that provide a new perspective and energy to continue waiting, CFers responding to anti-rejection meds, and CFers being listed at excellent tx centres with short wait lists. Every story is exciting and encouraging. I love all of the good news!
I also heard some good news from my exercise group at my tx centre. I heard that two of them have their new lungs! I am thrilled for them. Things are looking up!
In other hospital news, I was moved from my private room to a semi-private this afternoon. Ugh. Of course, my roommate is all kinds of crazy and I have NO sympathy for people who wreck their lungs by smoking. I'll save you the rant, but the smell of the cigarette smoke hanging in the air is an issue. I have no luck with roommates. Or with sharing bathrooms with five other people.
Enough about me already.
I am thrilled to hear all of the recent news in the CF blog community... CFers getting new lungs, CFers having dry runs that provide a new perspective and energy to continue waiting, CFers responding to anti-rejection meds, and CFers being listed at excellent tx centres with short wait lists. Every story is exciting and encouraging. I love all of the good news!
I also heard some good news from my exercise group at my tx centre. I heard that two of them have their new lungs! I am thrilled for them. Things are looking up!
Subscribe to:
Posts (Atom)