This update is long overdue - sorry to keep you hanging. I've been busy these last five months, and my one-year transplantiversary is in two days. I have often thought about blogging... but I usually write the post in my head and that's where it ends.
Last night, my husband and I ended up taking a trip down memory lane. We looked at pictures of my hospital stay post-transplant and I started to think about my blog. I started to read through it... and I'm glad to have it as a record. It was an emotional night though... it has been quite the journey to get to this point!!!
Let's start with the most important, I've been healthy! My check-ups have been about two months apart now and there have been no new issues. My diabetes is still annoying, with high sugars every evening, no matter what I do. My insulin injections sites still bruise, swell and cause scar tissue easily. The ring of tissue around my one anastomosis site is better, but still makes my breathing noisy when I exercise. I think it's because it didn't heal perfectly smooth, so the air bumps around when I breathe heavily. Both things are very minor and I'm feeling great!
I figure that I've been in a rebuilding phase since I last posted. I have spent time focusing on a couple of things: rebuilding myself physically, rebuilding relationships and rebuilding my surroundings.
So, I have been keeping up my daily workout. I do a walk/run every day. Lately, I've been doing it outside with my dog, which is the best. This week I actually doubled up my run! I also do weights daily, alternating between upper and lower body exercises. In March, I started going to field hockey practices. I was extremely cautious at first, letting the others players know to watch out for me. Games started outdoors in May, and I have been playing hard! I love being back! The other night, a player from the opposite team said I was too fast! I totally thought she was talking about someone else... I was so confused!
I have also spent a lot of time visiting with my friends and family. I love being the Auntie I want to be again. I have done all sorts of things with my nephews and niece, including babysit them (which I couldn't do alone before). I have been seeing a couple of friends on a regular basis, and they both have young children. So, as long as they're all healthy, we get together for lunch and outings. I have visited my old office a couple of times and lunched with my co-workers too! My husband and I have spent so much quality time together. It is absolutely priceless!
I have also devoted some time to the house. After two years of having no time or energy for it, things weren't the way I wanted them. You know, clutter, unfinished (or yet to be started) projects, and things lost their function. Continuing our renos will wait until the fall, but lots has been taken care of in the meantime. I have decluttered, organized, cleaned, donated clothes and household items (to Diabetes), had the house interior painted, had a garage sale for CF (our first and probably last... ugh... ) and more.
Other important things to note include our CF fundraisers. Again, we had a team of our favorite people participate in Great Strides. About 30 of us walked and raised $8700 for CF! Even more exciting... my husband participated in GearUp4CF! If you remember, last year, a woman by the name of Kitty rode her bike from Vancouver to Banff (for me) to raise money for CF. This year, my husband decided to do it. Since we overhauled our lifestyle post-transplant, we have been eating well and exercising. He is no exception! He purchased a road bike and started training. He is not a cyclist by any means, so riding a bike 1200km in nine days wasn't going to be easy! There were three mountain ranges to climb on the way, and the longest day was 190km. Plus the wind, rain, heat and exhaustion...
This year, the ride went in the opposite direction for the first time, from Banff to Vancouver. There were 14 riders along with four volunteers that drove the support vehicles and prepared lunch and snack breaks. My husband took his training seriously, and lost 50 pounds in the process. He also took the fundraising portion seriously. Each rider was expected to raise $5000 to participate. My husband won the Top Fundraiser Award, raising over $17,100 for CF! Along with personal donations from friends and family, we held a Beer & Burger Night at a local pub. With ticket sales and the silent auction, we raised $10,000! People were so generous and the night was a huge success!
The awareness created for CF (and transplant) was also a big success. Our story appeared in the local paper, complete with pictures! We were also asked to appear on a local breakfast show. We were interviewed about the ride, CF and lung transplant. Despite being nervous, it went very, very well!
The ride was a life-changing experience for my husband. Every rider had a connection to CF - whether they were riding for a loved one or in someone's memory. It was as much of emotional journey as a physical one. I couldn't be prouder of my husband. He set a goal to take on a huge challenge, and he did an amazing job. For the first time in years, I got to see him do something for himself. Sure, CF ultimately benefited (and therefore me), but he has a new hobby and sport, and it's all his!
I drove out to Banff to see him off. Some of our family joined us, and we provided the entire cheerleading section for the riders. All of the other riders had flown from their hometowns, so they didn't have any loved ones to see them off. I followed the riders to the first pit stop, cheering and taking pictures. The ride ended with a celebration at BC's Children's Hospital in Vancouver. I flew there with a couple of friends for the weekend. It was incredible to watch my husband, and the other riders I'd come to know vicariously, cross the finish line. It was an emotional reunion, and a truly inspiring day. I was asked to speak at the event, and I had the opportunity to thank all of the riders in my speech, plus share my story. I also met some very important people in the CF community, including Eva Markvoort's parents (Eva was in the documentary 65 Red Roses). It was a very special day.
In addition to the bike ride, which was one of the highlights for sure, we did a few other fun things. We went camping for the first time since 2008! It was awesome! The weather was hot, the mountains were beautiful and we loved being outside all day. Of course, I used ridiculous amounts of sunscreen, which is still so weird to me. I never used to burn! I also mowed the lawn a couple of times. My husband was out of town, so I figured why not? I had never mowed the lawn at our house before! I also went on my first hike in the mountains. It was harder than I thought, and I was frustrated that I was breathing heavier than everyone else. I still did it though! I also rode a bike for the first time, played baseball, flew on a plane, and painted the fence. My husband laughed when I asked him how to do it... but I had never painted before! I used to cough as soon as the paint can was opened, so I didn't even watch. It's totally different now!
So that's what I've been up to for the last few months. More thoughts on my one year anniversary coming up!
Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts
Saturday, July 23
Sunday, February 13
Time Flies!
I think I'm due for a bit of an update. The last few weeks have gone well in terms of my health. I had a run-in with CMV, but after a couple of weeks of oral anti-virals, it's gone again. Otherwise, I'm keeping up with my workouts, meds, sleep, and I'm even eating better. I have probably eaten more vegetable this year than I did all of last year!
I was so relieved to say goodbye to 2010. What a year. It was full of challenges, but great rewards too. I'm glad it's behind me and I can get back to the business of living.
I have been enjoying time with my friends and family. I have been out and about doing errands, going grocery shopping, and getting things done around the house. I made myself a giant TO DO list and I have been working hard to cross things off. After two years of being sick and letting things slide (or more accurately, these things fall off the priority list) it feels good to start catching up. I found a great book on uncluttering and it's been motivating me to organize and get rid of things. Yay! I have also officially read my first novel in over a year. It's an awesome feeling to get back to the things I enjoy!
I still struggle with joining the real world. Some days I think I fit in and can keep up, but other days are a challenge. I went back to my office for a social visit. It was as though nothing has changed, but everything has changed. It was a little strange, but I was happy to see everyone. They have been so supportive through the last couple of years.
I feel trapped in between these two worlds sometimes- I have had my transplant, but I have three good friends (all CFers) still waiting. It's a constant reminder of how far I've come. One of my friends has had two dry runs already, which is unusual for our hospital. I can't imagine how tough that is mentally and emotionally. I never thought I'd have a dry run, and luckily I didn't. Another friend is hoping for a regular ol' transplant but doing the work for a living donor transplant- where one lobe will come from one family member/friend and the second lobe from another. She's a lot like I was- on IVs like clockwork! And my third friend has been living in the hospital for six months (exactly today). She will stay there until she gets her transplant. Things have been very challenging and complicated for her. I want all of their transplants happen soon. I want them to be on the other side with me.
I passed my six month anniversary a couple of weeks ago. It was a normal day, but it's hard to believe where I was six months before. It really is unbelievable. I will be going for my next clinic on Tuesday and I am expecting another bronch to dilate my airway again. That tissue has definitely grown back. I can hear it when I breathe and feel the resistance when I exercise. Otherwise, I expect a six-month walk test and the usual PFTs, xray and port access. My appointments are about a month apart at this point, which is fine by me.
I am making all sorts of goals and plans for the future. I'm excited about the possibilities and what I can accomplish. I am so grateful and happy that my husband can have his life back too. I can't wait to see what this year brings us!
I was so relieved to say goodbye to 2010. What a year. It was full of challenges, but great rewards too. I'm glad it's behind me and I can get back to the business of living.
I have been enjoying time with my friends and family. I have been out and about doing errands, going grocery shopping, and getting things done around the house. I made myself a giant TO DO list and I have been working hard to cross things off. After two years of being sick and letting things slide (or more accurately, these things fall off the priority list) it feels good to start catching up. I found a great book on uncluttering and it's been motivating me to organize and get rid of things. Yay! I have also officially read my first novel in over a year. It's an awesome feeling to get back to the things I enjoy!
I still struggle with joining the real world. Some days I think I fit in and can keep up, but other days are a challenge. I went back to my office for a social visit. It was as though nothing has changed, but everything has changed. It was a little strange, but I was happy to see everyone. They have been so supportive through the last couple of years.
I feel trapped in between these two worlds sometimes- I have had my transplant, but I have three good friends (all CFers) still waiting. It's a constant reminder of how far I've come. One of my friends has had two dry runs already, which is unusual for our hospital. I can't imagine how tough that is mentally and emotionally. I never thought I'd have a dry run, and luckily I didn't. Another friend is hoping for a regular ol' transplant but doing the work for a living donor transplant- where one lobe will come from one family member/friend and the second lobe from another. She's a lot like I was- on IVs like clockwork! And my third friend has been living in the hospital for six months (exactly today). She will stay there until she gets her transplant. Things have been very challenging and complicated for her. I want all of their transplants happen soon. I want them to be on the other side with me.
I passed my six month anniversary a couple of weeks ago. It was a normal day, but it's hard to believe where I was six months before. It really is unbelievable. I will be going for my next clinic on Tuesday and I am expecting another bronch to dilate my airway again. That tissue has definitely grown back. I can hear it when I breathe and feel the resistance when I exercise. Otherwise, I expect a six-month walk test and the usual PFTs, xray and port access. My appointments are about a month apart at this point, which is fine by me.
I am making all sorts of goals and plans for the future. I'm excited about the possibilities and what I can accomplish. I am so grateful and happy that my husband can have his life back too. I can't wait to see what this year brings us!
Saturday, December 25
Merry Christmas
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!
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!
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!
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!
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.
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!
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