Tomorrow is my last day in the gym. It's hard to believe that the six weeks are up already. I am excited to finish the program and return to my normal life, but I'm wondering if I'm ready. I feel like it's graduation day and they're sending me into the real world for the first time. I have focused on exercise for six weeks. I haven't done much in the way of socializing or being in public. I feel so sheltered!
My physio has customized a home exercise program for me. I got the chance to review and practice it already. I have decided to do my work outs at home. There are pros and cons to the home gym vs. public gym. At home, I love how little effort it takes to get to the basement where we have our equipment, but I admit that I tend to take longer breaks because no one's counting! I should put a clock on the wall. I find at a weight room, there are other people watching so I tend to push myself more.
At home we have a treadmill, a bench and some free weights. We are also going to purchase a bosu ball (for my lunges and squats) and a roller (for my back exercises). It works out well because both my husband and I can use this equipment.
I will finish my IV meds tomorrow! I am looking forward to being free of the extra tube and bag with my pump. This has been my longest course of IVs to date- 2 and a half weeks (18 days).
Overall, I'm really happy with the program and my progress. I feel stronger and I can walk with less effort. I also feel like I have had a chance to work through more of my tx issues. I have seen the ICU and know exactly what to expect at the gym. I have met some wonderful people and heard their inspiring stories.
I can't believe there's only one more day to go!
Thursday, February 11
Thursday, February 4
Five Out of Six
I am nearly finished my fifth week of physio. The antibiotics have kicked in this week and I am feeling so much better. Last week was really tough. Plus there was no sympathy- I was still at the gym doing the same routine every morning.
This week I am also feeling better about tx in general. Last week I started experiencing anxiety before bed as I thought about receiving The Call. I was also wired at bedtime, which appears to be a side effect of Cipro. Let's just say that's not a good combo. In comparison, this week I feel more relaxed and comfortable about the idea of surgery and recovery.
I have been feeling like tx is the end of my life as I know it... which is too dramatic, but kind of true. I am going to trade the only life I have ever known for something new. Even though my lungs aren't working well right now, I am sort-of coping and I know what this feels like. Of course, my condition could get worse unexpectedly and I am in no way independent anymore. They don't call it end-stage CF for nothing! The anxiety comes in because post-tx is the unknown, and I don't know what it feels like.
It has really helped me to talk to the post-tx patients in the gym. Although not all of them are lung recipients, their stories are fascinating. Some have had major obstacles and set-backs, and some have had a relatively smooth recovery so far. Their stories and encouragement have meant a lot to me. I have one more week to enjoy their company before the program ends!
This week I am also feeling better about tx in general. Last week I started experiencing anxiety before bed as I thought about receiving The Call. I was also wired at bedtime, which appears to be a side effect of Cipro. Let's just say that's not a good combo. In comparison, this week I feel more relaxed and comfortable about the idea of surgery and recovery.
I have been feeling like tx is the end of my life as I know it... which is too dramatic, but kind of true. I am going to trade the only life I have ever known for something new. Even though my lungs aren't working well right now, I am sort-of coping and I know what this feels like. Of course, my condition could get worse unexpectedly and I am in no way independent anymore. They don't call it end-stage CF for nothing! The anxiety comes in because post-tx is the unknown, and I don't know what it feels like.
It has really helped me to talk to the post-tx patients in the gym. Although not all of them are lung recipients, their stories are fascinating. Some have had major obstacles and set-backs, and some have had a relatively smooth recovery so far. Their stories and encouragement have meant a lot to me. I have one more week to enjoy their company before the program ends!
Wednesday, January 27
IV Time
Last week was clearly smooth sailing compared to this week. I'm experiencing a bit of an obstacle this week. On Monday at lung transplant clinic I was put on IVs. It's not my usual routine, but I think it'll work. It's a combo of one IV med, Cipro, inhaled TOBI and extra Pulmozyme. At least I was able to be set up on home IVs, but it's all different. Different pumps, different rules and way less independence. A home care nurse had to come over today to change the first IV bag. Seriously. At least I am allowed to change the bag myself now, and home care only has to come on tubing change days. I have to go to the hospital to get my port needle changed because home care doesn't do that for whatever reason. If only it could all be done at the hospital since I'm already there every day, but they don't have a clinic like at home.
This week we have begun to work on my posture as well. I didn't think my back was that bad until I tried the first exercise. I couldn't do it. I was frustrated and shocked that I had lost so much flexibility. I tried an easier version of the exercise with more success. My physio also tried manipulating my back to relieve some of the pressure in my spine. It worked great. As the day went on I kept feeling better. I don't know how to describe it, except that I feel younger. The difference is amazing! I'm looking forward to working on my back more and correcting it as much as possible. I would love to see a ripple effect where a positive change in my spine allows my rib cage to expand more, leading to deeper breathing. That would be the ultimate result I could hope for!
This week we have begun to work on my posture as well. I didn't think my back was that bad until I tried the first exercise. I couldn't do it. I was frustrated and shocked that I had lost so much flexibility. I tried an easier version of the exercise with more success. My physio also tried manipulating my back to relieve some of the pressure in my spine. It worked great. As the day went on I kept feeling better. I don't know how to describe it, except that I feel younger. The difference is amazing! I'm looking forward to working on my back more and correcting it as much as possible. I would love to see a ripple effect where a positive change in my spine allows my rib cage to expand more, leading to deeper breathing. That would be the ultimate result I could hope for!
Saturday, January 23
Halfway There
Week three has wrapped up and I am halfway through boot camp. I am feeling much better at the end of this week compared to last. Last week I was concerned that I needed to go back on IVs, but I bounced back on my own. That's a huge relief.
I am enjoying my time at the gym and I like that I'm getting stronger. I can see the muscle definition in my arms again. I can walk farther and (a little) faster than before. I am also more tired than I was before. To spend two hours in the gym, I need to spend 22 hours resting. It's frustrating. I feel like I don't have energy for anything else. Like I said, the gym is my priority, but it's my everything at the moment. Frustrating!
Overall, I'm very happy with the physical therapy program. Working out under physiotherapist supervision is awesome. My sats are checked on a regular basis and I am able to work towards certain goals. We've already had to increase my O2 to 6L/min. The custom program and personal attention is really motivating. I also like that I can get to know my physio before surgery (and vice versa). It's one less unknown after surgery, and will ultimately benefit me in the end.
Speaking of goals, next week we are working on my posture. I slouch so much! It's gotten a lot worse over the last year. I used to try to correct it... but I don't have the energy anymore. It's so much easier to hunch, especially when I'm coughing a lot. This should be interesting.
I'm looking forward to a couple of quiet days off!
I am enjoying my time at the gym and I like that I'm getting stronger. I can see the muscle definition in my arms again. I can walk farther and (a little) faster than before. I am also more tired than I was before. To spend two hours in the gym, I need to spend 22 hours resting. It's frustrating. I feel like I don't have energy for anything else. Like I said, the gym is my priority, but it's my everything at the moment. Frustrating!
Overall, I'm very happy with the physical therapy program. Working out under physiotherapist supervision is awesome. My sats are checked on a regular basis and I am able to work towards certain goals. We've already had to increase my O2 to 6L/min. The custom program and personal attention is really motivating. I also like that I can get to know my physio before surgery (and vice versa). It's one less unknown after surgery, and will ultimately benefit me in the end.
Speaking of goals, next week we are working on my posture. I slouch so much! It's gotten a lot worse over the last year. I used to try to correct it... but I don't have the energy anymore. It's so much easier to hunch, especially when I'm coughing a lot. This should be interesting.
I'm looking forward to a couple of quiet days off!
Tuesday, January 19
Week Three Already
The time has been passing quickly during the physical therapy program. I work out hard and then I need to sleep. I feel like I haven't been able to accomplish anything else, but that's okay. The gym is my priority. I haven't worked out this much in years. I enjoy working out, but I wish I didn't need so much rest time in between. It's exhausting.
I have now had a full week to wrap my head around being active on the list. I find that all of my thoughts around tx are about two emotions: excitement and fear. I know that until now, I had spent more time being scared than excited. I feel that it's shifted this week. I am more in the middle now. I think of it as progress!
Yesterday at tx clinic I learned that five lung transplants have already been done this year. Five in 18 days!!! Apparently they always come in waves. I don't know where this leaves me though. Am I still second in line for my blood type and size? Or am I now first? There's another scary and exciting thought!
I have now had a full week to wrap my head around being active on the list. I find that all of my thoughts around tx are about two emotions: excitement and fear. I know that until now, I had spent more time being scared than excited. I feel that it's shifted this week. I am more in the middle now. I think of it as progress!
Yesterday at tx clinic I learned that five lung transplants have already been done this year. Five in 18 days!!! Apparently they always come in waves. I don't know where this leaves me though. Am I still second in line for my blood type and size? Or am I now first? There's another scary and exciting thought!
Monday, January 11
It's Official!
Big news... I am now active on the wait list. I have moved from Status 0 to Status 2 (high priority). That means that if lungs are available I can get THE CALL. Currently, there is one person ahead of me with the same blood type and approximate size.
I can't believe it. I did not expect this to happen today at transplant clinic. Yesterday I wrote about how I have five more weeks to get used to the idea... and bam! Today I'm on the list. There's been a lot of tears today and I can't say it out loud without crying yet. I also fully expect to freak out every time my cell phone rings. I know I'll get used to the idea quickly. After all, it's official!
I can't believe it. I did not expect this to happen today at transplant clinic. Yesterday I wrote about how I have five more weeks to get used to the idea... and bam! Today I'm on the list. There's been a lot of tears today and I can't say it out loud without crying yet. I also fully expect to freak out every time my cell phone rings. I know I'll get used to the idea quickly. After all, it's official!
Sunday, January 10
One Week Down
I have finished my first week of boot camp! Things have been going well at the gym for me. I am feeling good. I am up to 20 minutes on the treadmill, plus 10 different exercises with weights. I have already been increasing how much I can lift and it feels good. I am tired at the end, but I usually get a nap in the afternoon. I am also coughing out more than I would on a normal day, which I think is partially keeping me away from the looming next round of IVs. I am looking forward to pushing myself in the gym next week. I am also proud of how active I've been at home. Even though my exercise wasn't always regular, I tried to do it whenever I could handle it. It has really helped to make boot camp easier.
I will admit that even though I've done well physically this week, I can't say the same emotionally. I have had a couple of freak outs. I know that I will be activated on the wait list before the six weeks is up. Every day I'm getting closer. And it's scary. I still don't feel ready enough. And maybe I never will feel fully prepared. Maybe no one does.
Even bigger than the challenge of daily boot camp will be me coming to terms with being activated on the list. I know that's part of the deal when I agreed to transplant, but it feels like a huge hurdle. I have (at most) five more weeks to wrap my brain around this.
I will admit that even though I've done well physically this week, I can't say the same emotionally. I have had a couple of freak outs. I know that I will be activated on the wait list before the six weeks is up. Every day I'm getting closer. And it's scary. I still don't feel ready enough. And maybe I never will feel fully prepared. Maybe no one does.
Even bigger than the challenge of daily boot camp will be me coming to terms with being activated on the list. I know that's part of the deal when I agreed to transplant, but it feels like a huge hurdle. I have (at most) five more weeks to wrap my brain around this.
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