Up's and Down's

Yeah - I know, it's been a while since I last updated the blog, sorry for all the disappointed visitors... First of all, the good news, I'm still in a very good condition. I didn't have any infections which is quite unusual for this time of the year. Monday it was again time for the three months check up. The picture shows something like "The Horror chamber". Every single time I have to do the lung function check I'm extremly nervous beacause this buddy doensn't do sugarcoating. All he knows is talking pure, honest and brutal figures and facts on how my lungs are working. The key figure is called FEV1, the amount of litres one can exhale in the first second. Other than that it measures total capacity of the lungs, how much air stays in there (residual volume), etc. etc. And the benchmark is ridiculously high especially for FEV1. One should manage to exhale almost 4 litres in the first second. No idea how that should work. There are for sure nicer things to do on a day you have to take off from work. However the last few years this so called FEV1 was somewhere between 0.9 and 1.2 litres - which is roughly 25% of a "healthy" person. It was not really better this time, I scored 1.23 litres. Nontheless I look at it positively since the tendency is correct (slowly up). At home I analyzed all the results since 2002 and put together some graphs. The huge set back happened between 2003 and 2005. It's not unusual for CF patients that the condition can change for the whorse in a very short period of time (a sad story on that will follow). The lowest point was in 2010 with roughly 0.8 litres. After that, luckily the results improved again a bit and since then it's pretty stable. The question is now - does Kalydeco help after all? There's only one possible answer: "YES"! The lung funtion tests do only show half of the truth. There are at least four facts which show that Kalydeco does in fact work very well:

1. On a weekly basis I go to a physio therapist and we always measure the heart rate and the oxygene saturation. During the past few years the heart rate would always be between 80 - 90, the oxygene level 90% or lower. After I started with Kalydeco this changed drastically. Now my heart rate is 70 or lower and my oxygene saturation is always 95% or 96%.

2. Already the tiniest efforts resulted in a drastic increase of the heart rate, within seconds it would go to 110 and higher, whereas the O2 would do the opposit and drop to 85% and lower. Therefore it was almost impossible to perform exercises as it was simply too much for the body. Nowadays everything is more stable and I can easily do small exercises.

3. My weight almost exploded to 75kg. This is a good sign, almost too good for me and therefore I reduced it on purpose to 70kg again. 75 was just too much and at one point I was really afraid that I'll soon get my own post code :)

4. I managed to reduce cortisone from 7.5mg to 2.5mg. An crucial step for me since cortisone has a bad effect on the bones and the blood sugar level. My body gets less damaged now which is very important. But on the other hand it makes it difficult to compare the lung fuction test results; yes the values are only slightly better BUT I scored them with much less cortisone.


So it is obvious that the little blue angel is doing a great job and I don't want to miss him at all. I'm far from easily climing a mountain or three sets of stairs but I'm already happy if the condition stays as it is now since it could be different...


A reader of this blog mailed me last september. She had several infections and just came out of the Hospital. She was looking for a new doctor because she was afraid that her current one did not have enough knowledge on CF. I explained her how happy I am with my doctor in St.Gallen and she thought about having an appointment there. She seemed really motivated and wanted to become again more active after the stay in the hospital. She wanted to improve her condition again. She had a similar history as I have, her FEV1 dropped within months from 50% to 25%.


Last Friday I received a mail from her husband. She lost the battle.


This is the perfidiousness of this disease. It can force you on your knees within months. Therefore it is so damn important that you always stay focused and that you appreciate every single day - you need to be happy about the smallest improvements and stay postitve. First, the incredibly sad news worried me... heavily. But now, and don't get me wrong, it's still such a tragic story, I take it as motivation. Motivation to stay focused, motivation to keep on fighting, do my exercises, go to the gym and stay strong.


...Or motivation to try something new. Like yesterday when I first tried to play badminton. And it went pretty well. Of course I was not running across the field like a mad man, but the easy moving is apparently the exact right thing to do at the moment. I try do this now on a weekly basis. It was really fun.


Last but not least I want to show you the two graphs I put together - the FEV1 history of the past twelve years - and the small circle which shows the tendency since I started with Kalydeco. As already mentioned, it is only a small improvement BUT it is one and the direction is right. And after all, this is the most important fact.





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