CF Statistics

I have been keeping up with my exercise and crossing things off of my 'To Do Before Transplant' list. My husband has been helping me to take care of the things that require shopping. I really appreciate it because it takes so much effort to get in and out of the car with my O2. I am now committed to using an EverGo personal concentrator, which I made official by finally returning my regulator. I was offered the EverGo by my oxygen company on a trial basis. I have been using it since January and it's great, particularly when someone carries it for me. When I'm alone I use the cart, but it's heavy to lift and not ideal for the melting snow and puddles. It has it's benefits though- three hours of O2 and it can be recharged in the car or any wall outlet.

I am proud of myself for keeping up with my workouts, but it has been more challenging on the treadmill this week. I am more SOB and my sats are dropping more than I've ever seen before. I bought a handy little pulse oximeter (for only $50 online) and it's been helpful to check where I'm at.

Now for the interesting stuff...

I recently saw that the median age for CFers in Canada is up to 47.7 (as of 2007). The data has been compiled recently and it looks like the increase could be attributed to:

1. increase in the number of individuals diagnosed with CF as adults and have a mild gene mutation (although this appears not likely the cause)
2. increase in the number of lung transplants
3. better nutrition throughout entire life

I haven't seen much celebration over this yet, but perhaps the information is very new still. If you'd like to read more on this, the report can be found at http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf .

Moving Right Along

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!

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!