It's been a pretty good week. This time leaving the hospital (two weeks ago), I didn't feel nearly as well as the previous time. I am feeling decent now as the shakiness is gone and my appetite continues to improve.
I have worked my way back to my full exercise program (except for the treadmill part- only at 15 of 30 minutes). For the first time in over a year, my muscles are sore from exercising! I love saying that! Usually my muscles are sore from coughing, not working out. What a great feeling!
I finally gave in and returned my Evergo concentrator. It was very hard to part with my reliable, convenient little buddy. However, 6LPM on pulse doesn't cut it anymore. I have dreaded switching back to tanks, but it was necessary. I now have a continuous high flow regulator and size E tanks. Those are the big awkward ones that are barely stable sitting upright. I have both a single and double cart to pull the tanks. Ugh.
I have spent the last couple of days hanging out with my sister-in-law, nephews and niece. I had a wonderful time with them, and we even went to a couple of fun attractions. I haven't been to places like that for such a long time. Armed with a wheelchair rental (with single oxygen tank holder) and the double cart, I had O2 for about three hours at a time. That's right, one hour per tank... what a pain! Anyways, my sister-in-law pushed me in the chair while the kids took turns pulling the O2 cart. They were such great helpers and the novelty didn't wear off! I went through 30 tanks this week! What a hassle! My sister-in-law never complained about hauling the tanks and chair in and out of the car. Plus, she is one of the very few people who understands my needs and is thoughtful about how she can make things easier for me. That means I can relax and enjoy myself! I am happy to spend so much time with them and have a change of scenery! Now it feels like Summer!
Friday, July 23
Friday, July 16
A Special Day
Last week in hospital there was one day that stood out as special. That's the best way to describe it. It was out of the ordinary because of a couple of things that happened...
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
Tuesday, July 13
Six Month Follow Up Appointment
It's been six months since I was listed for transplant and time for a routine visit. I saw the doctors and did a six-minute walk test. The doctors seemed surprised that I haven't had my call yet. They have experienced a bit of a drought and things have recently picked up again with three surgeries last week. That brings the year-to-date total up to 21. The doctors seem to think that I will get my call before my next follow-up appointment in three months.
I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.
In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?
I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.
In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?
Friday, July 9
Heading Home
Dreams of an early discharge didn't happen this week. I should be going home tomorrow though. It feels like it's been a long week because the hospital Internet has been down for a couple of days and it made me feel isolated!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Thursday, July 1
Happy Canada Day!
I spent my Canada Day in the hospital. I was admitted yesterday because I was short of breath, and doing more choking than coughing. I definitely need some IVs and lots of physio. It's been exactly one month since I was last discharged. This is getting very predictable! It's too bad because I had two very good weeks after I left the hospital last. And then I had two terrible weeks, and I blame the bowel obstructions for setting me back! I couldn't do physio or even cough properly while I had so much abdominal pain. Hopefully I will leave on home IVs early next week.
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
Subscribe to:
Posts (Atom)