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!
Wednesday, January 27
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.
Wednesday, January 6
Six-Week Physical Therapy Program Begins
On Monday I began the pre-transplant six-week physical therapy program. Day one was the orientation. We met one of the physiotherapists, did a six-minute walk test and filled out a few questionnaires. The questionnaires were about my quality of life, mental state, and one for the occupational therapist. Next my husband and I headed to the transplant clinic where we touched base with one of the doctors that we hadn't met yet. As my support person, my husband is expected to be there and attend the lectures with me.
There are six of us in the program, but only five have been there so far. There weren't any introductions on the first day, but I am starting to get to know the others. I think there's one other CFer. I am the youngest in the group by quite a few years.
I will be in the gym every morning from 8:30-10am, which is really early for me! I usually don't get up until 10am. I will be assigned to a physiotherapist, who will design a cardio and strength training program for me. There are three physios with two patients each. Once a week we will go to transplant clinic. A couple of times a week there will be mandatory lectures on various topics related to transplant.
After another walk test on Tuesday, I began using the equipment. I have been walking on the treadmill and doing strength training on several machines. We have also started meeting the recovering transplant patients in the gym. Today we met an older man who is two months out and doing really well. We also heard that someone was transplanted yesterday so we can anticipate meeting them in the next couple of weeks. We saw STARS come in yesterday, and we also saw a Medi-vac team yesterday at a restaurant. Perhaps they were bringing in the new patient/organs.
Today was our first education session titled 'Wellness through Relaxation.' It was taught by one of the Occupational Therapists who referred to us as 'dudes' and 'old farts.' Needless to say, we didn't get a lot of quality information from the session. I spent the entire 20 minutes of the relaxation exercise trying not cough and disturb the entire group. Not my idea of a relaxing time!
Only five and a half weeks left!
There are six of us in the program, but only five have been there so far. There weren't any introductions on the first day, but I am starting to get to know the others. I think there's one other CFer. I am the youngest in the group by quite a few years.
I will be in the gym every morning from 8:30-10am, which is really early for me! I usually don't get up until 10am. I will be assigned to a physiotherapist, who will design a cardio and strength training program for me. There are three physios with two patients each. Once a week we will go to transplant clinic. A couple of times a week there will be mandatory lectures on various topics related to transplant.
After another walk test on Tuesday, I began using the equipment. I have been walking on the treadmill and doing strength training on several machines. We have also started meeting the recovering transplant patients in the gym. Today we met an older man who is two months out and doing really well. We also heard that someone was transplanted yesterday so we can anticipate meeting them in the next couple of weeks. We saw STARS come in yesterday, and we also saw a Medi-vac team yesterday at a restaurant. Perhaps they were bringing in the new patient/organs.
Today was our first education session titled 'Wellness through Relaxation.' It was taught by one of the Occupational Therapists who referred to us as 'dudes' and 'old farts.' Needless to say, we didn't get a lot of quality information from the session. I spent the entire 20 minutes of the relaxation exercise trying not cough and disturb the entire group. Not my idea of a relaxing time!
Only five and a half weeks left!
Thursday, December 31
Happy New Year
Time to say goodbye to 2009! Woo hoo! 2009 has been a rough year all around. I would have NEVER thought that my health would decline the way it did in 2009. From numerous IV treatments, port placement, new PFT lows, full-time oxygen to leaving work to lung transplant referral and assessment, 2009 was rough. It was hard physically, emotionally and pyschologically.
2009 had its good moments too. The support of my family and friends has been heart-warming. They are amazing. My husband has been a huge source of strength and has faced every single challenge with me. For this year's Great Strides Walk in May, my friends, family and co-workers raised well over $14,000 for CF. My husband and I went on a couple of trips, oxygen and all! We travelled to Vancouver Island with family, spent a week in Hawaii with two other couples, and flew to San Diego for a couple of days and then drove to Phoenix for two weeks grand total.
That said, 2010 is both scary and full of possibilty. I have never given much thought to the year changing, but this time it has huge significance. Here's to 2010!
2009 had its good moments too. The support of my family and friends has been heart-warming. They are amazing. My husband has been a huge source of strength and has faced every single challenge with me. For this year's Great Strides Walk in May, my friends, family and co-workers raised well over $14,000 for CF. My husband and I went on a couple of trips, oxygen and all! We travelled to Vancouver Island with family, spent a week in Hawaii with two other couples, and flew to San Diego for a couple of days and then drove to Phoenix for two weeks grand total.
That said, 2010 is both scary and full of possibilty. I have never given much thought to the year changing, but this time it has huge significance. Here's to 2010!
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