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!
Wednesday, January 6
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!
Wednesday, December 23
Happy Holidays!
I have been so excited for Christmas this year. Last year I was in the hospital until the week before, so my husband had to take care of everything including the shopping. On Christmas Day, my husband's stocking was filled with IOUs for presents I would have gotten him, if I could. It has been much easier to get into the Christmas spirit this year! I have done all of my own shopping this year, and everything is wrapped sitting under the tree. I have done some visiting with friends who are now off for Christmas, and I even dropped by my office to deliver baking (made by my husband) and to wish everyone a Merry Christmas. I have had appointments (more vaccines, anyone?) and errands to do everyday. The last week-and-a-half has been go, go, GO!
I think I've been too busy. I have enjoyed being productive and have tried to fit everything in, but I think I may have pushed my luck. And pushed my body too far. I have been so out of breath and any exertion is exhausting. I have upped my oxygen a notch to compensate. My back is sore everyday, and the thought of carrying my oxygen tank makes me cringe. I definitely overdid it! I hope that I can bounce back quickly to enjoy the holidays.
Merry Christmas to you and your families! I wish all of the CFers out there a nice holiday season, especially those on the list or in hospital. Happy holidays!
I think I've been too busy. I have enjoyed being productive and have tried to fit everything in, but I think I may have pushed my luck. And pushed my body too far. I have been so out of breath and any exertion is exhausting. I have upped my oxygen a notch to compensate. My back is sore everyday, and the thought of carrying my oxygen tank makes me cringe. I definitely overdid it! I hope that I can bounce back quickly to enjoy the holidays.
Merry Christmas to you and your families! I wish all of the CFers out there a nice holiday season, especially those on the list or in hospital. Happy holidays!
Thursday, December 17
Clinic
It seems like I'm spending a lot of time there! My visit yesterday went well. I'm almost two weeks out of the hospital... but it feels like much longer. That's what freedom does! My pft's are about the same, and my weight has gone up. Again.
I am now officially back to the weight I was when I first came to the Adult CF Clinic at 18. The weight that is listed on my driver's license. The ideal BMI. I chart my FVC, FEV1 and weight at home to keep track. Over the last five years, my lung function has zig-zagged it's way down and my weight has steadily climbed it's way back up. My weight bottomed out in 2007 after our big Europe trip, and have have slowly put that 10 kg back on.
I feel like my weight is the one thing about my CF that I can actually control. I had always struggled with it as a kid, but as an adult something clicked and I could maintain a healthy weight. I still have to work at it, but it's nice to have one less thing to worry about. I can force feed myself, no problem. I am so lucky that my husband is an excellent cook. I admit I don't cook at all. But I will eat and give compliments to the cook!
Another thing that has made a difference is getting my CFRD under control. I have been diabetic for maybe four years, and started using insulin three years ago. I feel like I have that figured out. My A1C is normal and I don't have too many highs or lows. Of course, transplant is going to screw that all up, but that's no surprise.
I'm looking forward to eating my share of holiday baking!
I am now officially back to the weight I was when I first came to the Adult CF Clinic at 18. The weight that is listed on my driver's license. The ideal BMI. I chart my FVC, FEV1 and weight at home to keep track. Over the last five years, my lung function has zig-zagged it's way down and my weight has steadily climbed it's way back up. My weight bottomed out in 2007 after our big Europe trip, and have have slowly put that 10 kg back on.
I feel like my weight is the one thing about my CF that I can actually control. I had always struggled with it as a kid, but as an adult something clicked and I could maintain a healthy weight. I still have to work at it, but it's nice to have one less thing to worry about. I can force feed myself, no problem. I am so lucky that my husband is an excellent cook. I admit I don't cook at all. But I will eat and give compliments to the cook!
Another thing that has made a difference is getting my CFRD under control. I have been diabetic for maybe four years, and started using insulin three years ago. I feel like I have that figured out. My A1C is normal and I don't have too many highs or lows. Of course, transplant is going to screw that all up, but that's no surprise.
I'm looking forward to eating my share of holiday baking!
Wednesday, December 9
Feelings
Alright, I admit that I'm not that good at writing about my feelings. I prefer to talk about them. I've never kept a journal or diary before. I can see that most of my posts are about factual information, instead of how I feel. I'm working on that.
Yesterday was the first day I truly let myself get a glimpse of how my life will be post-transplant. I have been thinking about the waiting and the recovery, but rarely do I think about how good I will feel eventually. I was so excited about it last night that I couldn't fall asleep. I will be able to run again. I will be able to play my sports that I miss so much. I will be able to travel and work again. I will be able to walk and clean and go up stairs without needing breaks and feeling tired. I won't need to carry around my oxygen. I will feel like my old self again- with enough energy for myself and others.
I am starting to forget what that feels like. I feel like I can't be myself 100% because I don't have the energy. I really struggled with that earlier this year. I don't have the energy to be myself. I felt like a lame version of who I was. I have adapted now. I just have to prioritize and do the most important things. Eventually, I will be able to do it all.
I felt like I rejoined society again yesterday. After nine days in the hospital, and a few days at home before and after... I realized I hadn't been out in a while! I drove for the first time in winter conditions yesterday. I put on jeans and blow-dried my hair. I went to two stores to do a little shopping. It felt so good. I didn't notice how long I had been hidden away until I got out there!
Yesterday was the first day I truly let myself get a glimpse of how my life will be post-transplant. I have been thinking about the waiting and the recovery, but rarely do I think about how good I will feel eventually. I was so excited about it last night that I couldn't fall asleep. I will be able to run again. I will be able to play my sports that I miss so much. I will be able to travel and work again. I will be able to walk and clean and go up stairs without needing breaks and feeling tired. I won't need to carry around my oxygen. I will feel like my old self again- with enough energy for myself and others.
I am starting to forget what that feels like. I feel like I can't be myself 100% because I don't have the energy. I really struggled with that earlier this year. I don't have the energy to be myself. I felt like a lame version of who I was. I have adapted now. I just have to prioritize and do the most important things. Eventually, I will be able to do it all.
I felt like I rejoined society again yesterday. After nine days in the hospital, and a few days at home before and after... I realized I hadn't been out in a while! I drove for the first time in winter conditions yesterday. I put on jeans and blow-dried my hair. I went to two stores to do a little shopping. It felt so good. I didn't notice how long I had been hidden away until I got out there!
Saturday, December 5
Home Sweet Home
I came home yesterday! This time I spent nine days in the hospital on IVs. I was surprised to go home IV-free, but I am feeling better and I think there's a concern about how much tobra I've been on lately. Realistically, it's only a matter of weeks before I'm back on it anyways.
It feels so good to be back at home. My husband hardly sleeps when I'm gone, so it's good we can get back to our routine. This time my hospital stay was a bit different. I usually have tons of visitors, but this time I didn't tell anyone I was in except family and a couple of friends. My family spent lots of time with me (maybe too much?) and two friends came to visit me. I didn't really hear much from my best friends though. Maybe this hospital stuff is getting old fast.
I know I hesitated coming into hospital, but I'm glad that I went in. It's hard to notice the slow decline when I'm occupied at home doing stuff. It's also hard to admit that it's happened already. In hospital, I could see that I started feeling like myself again around the one week mark. The difference was easy to notice because it happened so quickly. As much as I don't enjoy the hospital, it was the right place to be. I can't afford any more damage to my lungs.
I don't know why I can't have an uneventful hospital stay. I thought for a moment that this might be the first one, but I was wrong. I understand that little glitches are going to happen. I can get over that stuff. Luckily for me, I can speak for myself and ensure nothing crazy happens. But this week, a major mistake happened to me. My nurse gave me someone else's IV meds. I usually check the bag once it's hung, but this time I rushed into the shower and didn't see it until I came out. It was an awful feeling to know that something bad had happened, but I wasn't sure how bad. My stomach was in knots. In the end, after insisting that I page my doctor, I was reassured that I'll be alright. I still felt violated; someone had put something into my body that I didn't want.
Don't get me wrong, my CF team is fabulous and I wouldn't trade them for anything. I feel very lucky to be surrounded by staff that have known me for 11 years (since I transferred from the Children's) and care SO much. But the staff I see in hospital (nurses, etc.) aren't in the same category. Some are really nice and competent, and some don't get CF at all and can't even give me the right IV bag.
Glad I'm back at home, safe and sound.
It feels so good to be back at home. My husband hardly sleeps when I'm gone, so it's good we can get back to our routine. This time my hospital stay was a bit different. I usually have tons of visitors, but this time I didn't tell anyone I was in except family and a couple of friends. My family spent lots of time with me (maybe too much?) and two friends came to visit me. I didn't really hear much from my best friends though. Maybe this hospital stuff is getting old fast.
I know I hesitated coming into hospital, but I'm glad that I went in. It's hard to notice the slow decline when I'm occupied at home doing stuff. It's also hard to admit that it's happened already. In hospital, I could see that I started feeling like myself again around the one week mark. The difference was easy to notice because it happened so quickly. As much as I don't enjoy the hospital, it was the right place to be. I can't afford any more damage to my lungs.
I don't know why I can't have an uneventful hospital stay. I thought for a moment that this might be the first one, but I was wrong. I understand that little glitches are going to happen. I can get over that stuff. Luckily for me, I can speak for myself and ensure nothing crazy happens. But this week, a major mistake happened to me. My nurse gave me someone else's IV meds. I usually check the bag once it's hung, but this time I rushed into the shower and didn't see it until I came out. It was an awful feeling to know that something bad had happened, but I wasn't sure how bad. My stomach was in knots. In the end, after insisting that I page my doctor, I was reassured that I'll be alright. I still felt violated; someone had put something into my body that I didn't want.
Don't get me wrong, my CF team is fabulous and I wouldn't trade them for anything. I feel very lucky to be surrounded by staff that have known me for 11 years (since I transferred from the Children's) and care SO much. But the staff I see in hospital (nurses, etc.) aren't in the same category. Some are really nice and competent, and some don't get CF at all and can't even give me the right IV bag.
Glad I'm back at home, safe and sound.
Tuesday, December 1
My Top 10 Things to Bring to Hosptial
These are the things I don't come to the hospital without. They make me more comfortable and the time go by faster.
10. Pillow- those plastic, crinkly, hospital-issue ones suck.
9. Sweatpants & hoodies- comfy clothes are a must!
8. Books & magazines- I usually get a lot of reading done when I'm alone.
7. Post-it notes & pencil- I like to keep track of my own blood sugar numbers, weight etc. while I'm here. Easy reference!
6. Lotion, chapstick & eyedrops- one night in the hospital is enough to suck you dry of all moisture. I am constantly reapplying these things!
5. My insulin & blood sugar kit- My CFRD is fairly well controlled and I only test periodically at home. But in hospital, the expectation is that my blood sugar will be monitored closely. I always bring my own stuff so the nurses don't use theirs... it's more painful and needs a huge amount of blood to test!
4. My port- I don't leave home without it! Since I got it in August, it has made admissions much easier and less stressful. I am SO glad I don't need to get a PICC every single time.
3. Cell phone- an essential to schedule visitors and stay in touch with everyone! I am lucky to have lots of family and friends hang out with me!
2. Laptop- My husband gave me a laptop recently as a present, and I don't know what I did without it! Good for emails, facebook, blogging, itunes and movies!
1. Food & Drinks- I admit that I'm a bit of a hospital food snob. I don't understand how I'm expected to gain weight eating that stuff. Ever heard of a beef salad sandwich? Imagine tiny mushy pieces of roast beef covered in mayonnaise on bread. Did I mention it's a strange grey color?
Needless to say, I am looking forward to going home! One week down already!
10. Pillow- those plastic, crinkly, hospital-issue ones suck.
9. Sweatpants & hoodies- comfy clothes are a must!
8. Books & magazines- I usually get a lot of reading done when I'm alone.
7. Post-it notes & pencil- I like to keep track of my own blood sugar numbers, weight etc. while I'm here. Easy reference!
6. Lotion, chapstick & eyedrops- one night in the hospital is enough to suck you dry of all moisture. I am constantly reapplying these things!
5. My insulin & blood sugar kit- My CFRD is fairly well controlled and I only test periodically at home. But in hospital, the expectation is that my blood sugar will be monitored closely. I always bring my own stuff so the nurses don't use theirs... it's more painful and needs a huge amount of blood to test!
4. My port- I don't leave home without it! Since I got it in August, it has made admissions much easier and less stressful. I am SO glad I don't need to get a PICC every single time.
3. Cell phone- an essential to schedule visitors and stay in touch with everyone! I am lucky to have lots of family and friends hang out with me!
2. Laptop- My husband gave me a laptop recently as a present, and I don't know what I did without it! Good for emails, facebook, blogging, itunes and movies!
1. Food & Drinks- I admit that I'm a bit of a hospital food snob. I don't understand how I'm expected to gain weight eating that stuff. Ever heard of a beef salad sandwich? Imagine tiny mushy pieces of roast beef covered in mayonnaise on bread. Did I mention it's a strange grey color?
Needless to say, I am looking forward to going home! One week down already!
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