Transplant
The two week point
Now that I have been on Kalydeco for 2 weeks I thought it was time for another update. After the initial coughing period for the first few days, I was coughing much less for the next week. My cough increased slightly a few days ago, but it is still much less than my ‘normal’ cough. There are still no crackles, and my lungs feel less restricted or tight. My pfts increased significantly in the first few days (15%), and this was stationary for the next week. I thought I had hit my max as my pfts were not changing, it was about day 12 and I knew the clinical trial results had hit close to the maximum pft results at day 14. I was very excited to find that this week my pfts have been gradually going up slightly, now at about 20% higher. I don’t know exactly how accurate my machine is, but I am seeing the highest numbers I have seen on it (I bought it this year), so that has to be good! Normally the only way my pfts ever get higher is with IVs, so it is very exciting to see the number go up and stay there! I am hoping that now that there is less mucus, and therefore less infection, the inflammation will start to settle. I think this is what is helping my pfts at the moment.
I have put on 2kgs, I think this is due to less coughing and less infection stealing my energy, and also a slight increase in appetite. I played tennis and although I was still puffed out, I had more stamina, and did not have salt on my face afterwards. Previously when I have exercised (eg 1-2 hours at the gym with body pump/balance/jam or playing tennis) it has taken me a few days to recover as I have lost so much salt, after tennis I felt fine and not at all tired. So my recovery seems to be much faster.
I have been keeping up with ventolin, hypertonic & pep and pulmozyme. For the first time in my life I am excited to do physio as I can see the results on my pft machine (It’s possible that I could have improved equally without all my effort but it seems to be helping). I have read posts by other cfs about the impact of pft results on our emotions, and I particularly agreed with a post by Alex (http://kalydecoforaustralians.blogspot.com.au/).
The FEV1 score is the main objective measure we have to tell us how our lungs are going. When I was younger I did not worry about this much as I was pretty stationary in the 90s. They would go up and down a bit, but in 2003 at 85% I felt like I had a large ‘buffer zone’ between my pfts and the transplant point. I followed the research and I was pretty optimistic as I felt that medications would be developed before I got to the transplant point. Since then I have been going up and down, with the down parts dominating. Besides when I have IVs, I can only think of a handful of times that my pfts have gone up in between clinics. I am used to seeing numbers that get lower, and I have been very frustrated when they haven’t gone back up with IVs. I used to graph my pfts, but I stopped a few years ago when my pfts started dropping faster. Most people my age know that 20-30% generally means lung transplant assessment, so I was worried when I first got into the 60s, then the 50s, and this year the 40s. I was expecting that within 5-10 years I would need a lung transplant. It is hard to explain exactly what it feels like to see the numbers going up, it doesn’t seem real as going up does not normally happen often. Going up 20% is not something that I ever thought was possible, even with Kalydeco. It feels like I’ve won the lottery twice, first with G551D, and second with it helping so well! I don’t want to look too far into the future as it is only week 2, but I am hoping Kalydeco can help delay or even stop the need for a transplant. Might have to actually care and look into my superannuation, something that has never been a priority for me!
magicbluepill 