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!
Sunday, September 26
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!
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