Okay, I got a phone call this afternoon that there's a cancellation and I can be assessed next week for transplant. I spent the next hour wandering around the house, pumped full of adrenaline, trying to get used to the idea. See, I was originally told that the next available slot was mid-January. I told the pre-transplant coordinator that I was always available and this is my priority... and voila, here's a short-notice opportunity! It's great to be able to do the assessment while I am feeling good and recently off IVs, but I didn't imagine it would be so soon! I feel like I've been caught off guard, but this is good news and I'm happy about it!
Now to back up a little bit...
My transplant journey started on June 25th when my CF doctor sent a referral letter to the Transplant Centre closest to where I live. Three months later on September 24th was the next step… meeting one of the doctors for my initial appointment. This was an opportunity for my support person (my husband) and I to “discuss the possibility of lung transplantation.”
Before the meeting even started I had low blood sugar, so my husband went to find me a chocolate bar. Of course, that’s when we were called in. Wonderful first impression- me light-headed and my husband gone to find a vending machine.
The meeting started with a brief review of my history, then the doctor talked about the program, and then we had a chance to ask our questions. My CF history is rather boring until this year. Since Christmas I have been treated with IVs five times, went on oxygen, got a port, and saw my PFTs (FEV1) dip under 30%.
My husband and I left the meeting feeling pretty good about things. The doctor spoke highly of the program and their stats are well above the international average. They do 38-47 lung transplants per year, which is quite respectable. The most important tidbit we left with was that this IS the right time for me. I am in the window. My lungs are crappy enough but my body is still healthy enough. If your lungs aren’t bad enough, the surgery is hardly worth the risk. If your lungs are bad and your body is too weak, recovery can be compromised. It was reassuring that other doctors can review my medical records and confirm that this is it. There isn’t time to procrastinate and let more exacerbations take their toll.
Good thing I am moving right along!
Thursday, October 29
Monday, October 26
Starting a New Routine
I am making a commitment to get back to my strength training routine. In terms of exercise, I always do two 20-minute walks with my dog each day. However, I haven't been doing my weights for a few months now... because I was working and didn't have the time/energy or I didn't feel well enough or various other excuses. I am officially getting back into it!
I believe that physical activity is a HUGE factor in keeping me well. I have played sports all of my life and I have been 'healthy' for the majority. Really, it's only been the past year where things got tough. I kept playing sports right until last Christmas. After that, it was too hard. I couldn't catch my breath after running, and I was so tired after that I immediately crashed once I got home. I even went as far as trying to umpire with an oxygen tank strapped to my back, but that led to other difficulties!
I have really noticed how weak my legs get when I'm sick, particularly in hospital. If I squat, my legs shake when I try to stand back up. I don't like that feeling. I know after transplant I'll be even less active for the first couple of months. I want to get my strength back now.
The RT from my oxygen company is coming over today to exchange my concentrator. The one I have now only goes up to 5 LPM. After my last hospital stay, I'm already sitting at 4. I will need more O2 if I'm going to get through my routine. Plus, I will also start using our treadmill again when the snow sticks around and I can't do a good 20-minute walk outside. If I am going to walk on the treadmill, I might as well try running. It'll take me a while to get there, but I am going to do it. It's funny- lately I don't even use expressions like 'running errands' or 'run over to the store' because it's obviously not true. I better do something about that!
I believe that physical activity is a HUGE factor in keeping me well. I have played sports all of my life and I have been 'healthy' for the majority. Really, it's only been the past year where things got tough. I kept playing sports right until last Christmas. After that, it was too hard. I couldn't catch my breath after running, and I was so tired after that I immediately crashed once I got home. I even went as far as trying to umpire with an oxygen tank strapped to my back, but that led to other difficulties!
I have really noticed how weak my legs get when I'm sick, particularly in hospital. If I squat, my legs shake when I try to stand back up. I don't like that feeling. I know after transplant I'll be even less active for the first couple of months. I want to get my strength back now.
The RT from my oxygen company is coming over today to exchange my concentrator. The one I have now only goes up to 5 LPM. After my last hospital stay, I'm already sitting at 4. I will need more O2 if I'm going to get through my routine. Plus, I will also start using our treadmill again when the snow sticks around and I can't do a good 20-minute walk outside. If I am going to walk on the treadmill, I might as well try running. It'll take me a while to get there, but I am going to do it. It's funny- lately I don't even use expressions like 'running errands' or 'run over to the store' because it's obviously not true. I better do something about that!
Friday, October 23
65_RedRoses
Have you heard about the documentary 65_RedRoses? It's a film is based on the lung transplant journey of Eva, a 23 year-old with CF from Vancouver. It starts with Eva on the transplant list, declining and spending lots of time in the hospital as the months drag on. The film also focuses on two relationships that Eva has made with other CFers online, and how these girls deal with their current CF lives plus support each other.
I was thrilled to finally see the film. I had to get a day pass to leave the hospital, but I wasn't about to miss it. I highly recommend watching it. It's a real look into life with CF and the wait for new lungs. The film does an amazing job of capturing that. I have been reading Eva’s blog for some time, and her zest for life and fun-loving personality jump out at you immediately. Two years after transplant, Eva’s story continues off-camera. My thoughts are with Eva as she continues her fight. She is amazing.
To check out the trailer and for more info, see 65redroses.com or http://www.youtube.com/watch?v=fMGUXOtFxjc. A shorter version of the film will air on CBC Newsworld’s Passionate Eye on November 16, 2009 at 10pm EST. I am looking forward to it- I want all of my friends and family to watch, plus it's great awareness for CF and organ donation!
Wednesday, October 21
Clinic Visit
I spent the morning at clinic getting set up with Azli and an e-flow. I've heard about these things through other people's blogs, but it's still very new in Canada. I think it's still in a study phase. Anyways, I'm willing to try a new antibiotic and hope that I notice a difference. It would be awesome to maintain the way I feel now for as long as possible! I also got my flu shot, #1 of 2. Once the H1N1 shot is available I'll be getting that as well.
Tonight I'm looking forward to getting together with some other CFers from my clinic. I don't know many CFers, so its great to get to know a few. It sucks that we are discouraged from hanging out together. Silly germs. That's the reason CF Camp got cancelled back in the early 90's. They figured out how cepacia was spread and they pulled the plug. It's too bad- I have so many fond memories of CF Camp.
The camp's location in the Rockies was beautiful and the counsellors were amazing. I still see a few of them around (small world!) Our CF Nurse always came along too. I remember how great it was to connect with friends from all over the province every summer. And the crazy pranks we used to pull! I remember how neat it was to see the older CFers and hang out with them. I remember how everyone crowded into "the pit" of one of the cabins to do nebs and physio as a group. I remember how there was a weigh-in at the beginning and end of camp... leading to Pig of the Day and Pig of the Week awards. I remember how it was free so everyone could afford to go. I remember how it was a special time with special people. I'm glad that I got to experience it.
Tonight I'm looking forward to getting together with some other CFers from my clinic. I don't know many CFers, so its great to get to know a few. It sucks that we are discouraged from hanging out together. Silly germs. That's the reason CF Camp got cancelled back in the early 90's. They figured out how cepacia was spread and they pulled the plug. It's too bad- I have so many fond memories of CF Camp.
The camp's location in the Rockies was beautiful and the counsellors were amazing. I still see a few of them around (small world!) Our CF Nurse always came along too. I remember how great it was to connect with friends from all over the province every summer. And the crazy pranks we used to pull! I remember how neat it was to see the older CFers and hang out with them. I remember how everyone crowded into "the pit" of one of the cabins to do nebs and physio as a group. I remember how there was a weigh-in at the beginning and end of camp... leading to Pig of the Day and Pig of the Week awards. I remember how it was free so everyone could afford to go. I remember how it was a special time with special people. I'm glad that I got to experience it.
Tuesday, October 20
Alternative Medicine Blogger Challenge
A blogger challenge... I'm in! Check out Piper's original post for more on Alternative Medicine.
1) What are your thoughts on "alternative" forms of medicine?
I admit that I would like to learn more about alternative medicine. Some of it is a little too far out for me, but some of it makes more sense. Does anyone else remember when tumeric was supposed to help CFers?
2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?
Not yet, but I'm open to new things, especially as my CF becomes more severe. I would never replace any of my current CF routine with alternative medicine, but it could complement it. My biggest concern is how something may interact with all of the meds I'm already taking.
I am considering seeing a naturopathic doctor. I think it's covered by my health care plan. I know other people who have and liked the results, mostly focused around their diet. However, if I went and they said not to eat dairy, meat, sugar, etc. I couldn't do it. No way. I eat what I want. That's what enzymes and insulin are for!
3) What does "healing" mean to you in the context of cystic fibrosis.
Being realistic, healing means "stable" more than anything to me. Feeling well and staying well, both physically and emotionally.
1) What are your thoughts on "alternative" forms of medicine?
I admit that I would like to learn more about alternative medicine. Some of it is a little too far out for me, but some of it makes more sense. Does anyone else remember when tumeric was supposed to help CFers?
2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?
Not yet, but I'm open to new things, especially as my CF becomes more severe. I would never replace any of my current CF routine with alternative medicine, but it could complement it. My biggest concern is how something may interact with all of the meds I'm already taking.
I am considering seeing a naturopathic doctor. I think it's covered by my health care plan. I know other people who have and liked the results, mostly focused around their diet. However, if I went and they said not to eat dairy, meat, sugar, etc. I couldn't do it. No way. I eat what I want. That's what enzymes and insulin are for!
3) What does "healing" mean to you in the context of cystic fibrosis.
Being realistic, healing means "stable" more than anything to me. Feeling well and staying well, both physically and emotionally.
Sunday, October 18
Hello Frustration
Fresh out of the hospital, I am feeling better than I have in months. Even better than after home IVs in August. I have been trying to take advantage and get some things done around the house. I feel like I've accomplished so much already, and it IS a lot compared to my productivity over the last couple months. But realistically, it's hardly anything. Hello frustration.
Today I had a meltdown when my husband started doing the housework that I had been planning to do. Of course, I appreciate him helping me and letting me save my energy for other (more fun) things. But the frustration still hit me. These are things I want to do, but have a hard time doing. Yes, I know that getting out of doing chores should be celebrated... but I feel like I still need to have that sense of accomplishment when you finish a task. Those moments are happening less and less.
I think it's a control thing. I want to do what I want when I want. With a baseline lung function around 30% on a good day, that isn't always possible. I have to remind myself to take the help offered. I need to prioritize and make sure my effort and energy is well spent. I need to let go a little. Easier said than done.
I am so lucky to have people who care about me and are willing to help me. My husband is especially thoughtful and selfless. He is amazing. I couldn't imagine living without him, trying to manage everything from treatments to cooking alone. To be quite honest, if I lived on my own I'd probably starve! I just have to get used to the idea that until I am a few months out after transplant, this is the new reality.
Yeah, I think it's a control thing.
Today I had a meltdown when my husband started doing the housework that I had been planning to do. Of course, I appreciate him helping me and letting me save my energy for other (more fun) things. But the frustration still hit me. These are things I want to do, but have a hard time doing. Yes, I know that getting out of doing chores should be celebrated... but I feel like I still need to have that sense of accomplishment when you finish a task. Those moments are happening less and less.
I think it's a control thing. I want to do what I want when I want. With a baseline lung function around 30% on a good day, that isn't always possible. I have to remind myself to take the help offered. I need to prioritize and make sure my effort and energy is well spent. I need to let go a little. Easier said than done.
I am so lucky to have people who care about me and are willing to help me. My husband is especially thoughtful and selfless. He is amazing. I couldn't imagine living without him, trying to manage everything from treatments to cooking alone. To be quite honest, if I lived on my own I'd probably starve! I just have to get used to the idea that until I am a few months out after transplant, this is the new reality.
Yeah, I think it's a control thing.
Wednesday, October 14
Grand Opening of Sandy's CF Life
Alright. Here we go! Post number one.
My name is Sandy and I'm a 28 year old CFer. It has taken me a while to decide to create a blog, but I did it. Actually, this is try #2 because I'm locked out of my original account. Anyways, I wanted to document and share my experience as I start the lung transplant evaluation process. Officially, my transplant journey started on June 25th with a referral letter from my CF doctor to the closest Transplant Centre to where I live.
I have been thinking about transplant every single day this year. One of the things that helped me the most has been reading other people's stories. And even better than that, reading other CFer's blogs has really shown me that I'm not alone and taught me so much. So I am joining the club and starting a blog!
Today is a good place to start because I feel good. I just got back from the hospital after getting my IVs disconnected. I had been in the hospital for 9 days and then finished my IVs at home for the remaining 5 days. That's my October. I can't believe how lousy I felt two weeks ago... I was short of breath 24/7 and overworking my o2 concentrator! I am SO much better now.
I think that's a good start. Welcome to my CF life!
My name is Sandy and I'm a 28 year old CFer. It has taken me a while to decide to create a blog, but I did it. Actually, this is try #2 because I'm locked out of my original account. Anyways, I wanted to document and share my experience as I start the lung transplant evaluation process. Officially, my transplant journey started on June 25th with a referral letter from my CF doctor to the closest Transplant Centre to where I live.
I have been thinking about transplant every single day this year. One of the things that helped me the most has been reading other people's stories. And even better than that, reading other CFer's blogs has really shown me that I'm not alone and taught me so much. So I am joining the club and starting a blog!
Today is a good place to start because I feel good. I just got back from the hospital after getting my IVs disconnected. I had been in the hospital for 9 days and then finished my IVs at home for the remaining 5 days. That's my October. I can't believe how lousy I felt two weeks ago... I was short of breath 24/7 and overworking my o2 concentrator! I am SO much better now.
I think that's a good start. Welcome to my CF life!
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