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Mi

17

Feb

2016

Searching for the limit

I know - it's been more than five months since my last update, but finally I found some time to keep you posted. There was not much change but still it's getting better and better. I manged to do some skiing two times this year, despite the terrible winter. The first time I was worried, how my body would react in the height because usually my comfort zone ends somewhere between 1600 and 1800m above sea level. Hardcore as I am, the first cabin took us straight to 2020m and I did not feel different at all. My current limit I only reached on the second day. The whole day we've been skiing between 2000 and 2450m and I felt pretty good. But the very last ride we wanted to start from the top and went to 2700m. Bad idea as I found out. Already in the cabin I started breathing heavily, my legs felt weak, I felt dizzy and my heart rate got faster and faster. My oxygene saturation must have been between 75 and 85% and the small walk from the station to the slope was a real challenge. Lucky enough I recovered by every meter we got down the slope and my overall conclusion is still extremely positive. Two years ago this would not have been possible, a full day of skiing (40km) at more than 2000m above sea level, just impossible. I remember on day in 2003 when we went to the same place. After only three rides I had to stop and spend the rest of the day in the restaurant because I was so exhausted. Weiredly my lungfunction back the was better, just looking at the numbers but still I felt much worse. I can't really explain why this is the case but mabye the capacity was better, whereas the quality of these cells was worse. Today I might have less volume but I can use this more efficiently. I mean in the end it doesnt' really matter WHY it is better, as long as it IS better.

So how about the clinical state? End of december I had another check in the hospital and the news were really reassuring. All the blood numbers are good, blood sugar level is at 6.7 and FEV1 got slightly better again. Furthermore I got rid of another antibiotic pill (Zithromax) and I'm still not taking any prednisolone. Remember the daily therapy sessions I had to do to get rid of the mucus? During the last five months I did this maybe five times for ten minutes. There is just no mucus down there. It's been 21 months now since I take Kalydeco and I wasn't sick a single day since then, nor did I have to do any IV treatment. Hardly to imagine after the eight years before when I had to do at least 1 - 2 treatments every year.

Sometimes I tend to forget how grateful I have to be for my current state... but I try hard to think of it as often as possible and enjoy every minute of my life...

Mi

09

Sep

2015

Achievements

The pic with the cross...

This is the true symbol of my biggest achievement during many years.Some of you might recall that I mentioned at the beginning of this blog how my big dream is to climb the nearby mountain which I can see from my home but how this seemed to be impossible at that time. Time and time again I looked at it in awe, saying to myself: "Some day... some day...". This summer I already resigned and thought another year is gone and I did still not manage to do it. I didn't feel ready for this adventure. Too big was my fear to fail. But then, two weeks ago, my girlfriend said to me: "You know, you could do it. You would need time, but I'm sure you would be able to do it.". Words which wouldn't leave me anymore. They remained in my brains, screaming at me every day.... "YOU COULD DO IT!". And so I decided to try it. On a Thursday morning I packed my rucksack, put on my hiking shoe and started at 9am my adventure. The hardest part was the beginning. It was incredibly steep and every other minute a cow was blocking my way but I did not give up. An hour later I arrived at my first stop, a small cottage where I had a coffee. There was a signpost threatening with "Only for experienced hikers". Not exactly a matching attribute, and yet I wanted to give it a try. "You can always turn around", said the waitress; but this statement should be proved wrong later on. So I continued my journey, already 1400m above sea level, still 300 more to follow. As the path got more narrow and steeper and I crossed over a rock, holding on to iron rods, I asked my self: "How can I ever turn around now, there's no way I can cross this rock again.". There was only one way - up, up, up. I crossed at least five more solid rocks, holding on to chains, ropes, roots and others stuff. Two hours later I finally saw the cross at the top and endorphines were flooding through my body. An overwhelming feeling built up and I almost ran in the end. At 12.15 I achieved my goal. My goal to climb this mountain, a goal which was inside me for years. With incredible joy I looked over the flat which was lying 1300m below me and I said to myself. "It is true. One can really achieve everything if the will is big enough". And it was also these words which I wrote down to the book which was attached to the cross. Half an hour I spent 1703m above sea level and I remembered how were in Zermatt a few years ago, 1600m and I could hardly walk without catching breath. Something really has changed. I chose another way down which was a bit less steep but still very difficult. After 5.5 hours I finished my tour. I had achieved my goal. A goal for which I was more than happy to suffer for three days from the sorest muscels ever.. :)

The pic with the sherpa..

..is another confirmation of my current situation. Fun parks where you climb between trees became very trendy in Switzerland recently. You recieve all the equipment you need to walk from platform to platform. Sometimes it's pretty difficult and it's a mental and physical challenge. You have to use every muscle in your body, kind of a full body work out in nature. Since I was unsure whether I can really do this without annoying all the people following behind me, we went there on a Monday afternoon. Already after the first few meters, I was confident that I could actually do this. We spent three hours in the trees and I felt like a chimp... (and champ) :) In the end I was incredibly happy and I achieved another goal. And again - my muscles were aching like hell the next day.

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Mi

19

Aug

2015

What's new?

... not so much actually. And yet it's already been three months since my last update. Time's running and just a few minutes ago I received my 17th Kalydeco package. It's still a very special moment everytime when the mailman is delivering the seemingly unusual package, not knowing how incredibly valuable the parcel is thathe's holding in his hands. Undoubtably a certain routine has come along now, but it is still the little blue angel to me. A blue little pill which has brought so much change to my life, no IV thearapy since 15 months, much less coughing, reducing my daily cortisone dosis by factor fifty, not a single day of sickness, a bit more air to breathe and a more or less easy everyday life. Of course there are questions remaining. Why did the lung function not increase more? Why am I still struggling to climb several sets of stairs? Is there any room for improvement after all or are my lungs too severely damaged? But if you think about it, these are to wrong questions. I shouldn't always want more and more. I should be happy with the current situation. I managed to stabilize my condition. Altough it's not going straight up there is still a slight tendency pointing in the right direction which sadly enough is the contrary to the usual development of CF. And this is what I have to take as motivation. I don't need to finish a marathon to be happy. I'm blessed enough to live an independent life, to go to work everyday and to enjoy the time. I am grateful that life has provided me with this opportunity.

And now sentimentality off. What else is going on? It's already been more than a month since my holidays and we spent two beautiful weeks in Italy with many long walks, usually between 5 and 10km a day, uphill and stairs included. Walks which I probably couldn't have done with Kalydeco. Unfortunatley I didn't exercise very much and it's been over three months since I was last on the hometrainer in the office (hometrainer in the office... sounds weired...). But yesterday I finally managed to do a session over lunch time and I was a bit worried how bad it would be. But lucky enought I only lost about 5% of my top level. I think I should get back there in no time.

And then there's some other great news for all the F508del mutants. There is a new medicine called Orkambi. It's been developped also by Vertex and should be available already in 2016. Of course there will be again discussions whether it will be covered by the insurance since the lung function will not increase drastically. But it reduces the danger of infections heavily and that's the main thing, isn't it? Check out the two links for more information: link1, link2.

And last but not least: stay motivated. Take on the fight. CF says it all: Constant Fight! :_




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Di

26

Mai

2015

Flying high...

Writing a blog entry in over 8000m above sea level. A breath taking feeling of happiness overcomes me. But it's not only the view of the clouds below me which makes me feel free and happy. It is more the easiness with which I could spend the last three days. I had to go to London for business purposes. A so called business trip directly to the center of the european financial world. It was the first journey "alone". Travelling in a suit and just with hand luggage in which of course the "Blue Angel" was safely waiting to be revealed later. A few months ago I could have hardly imagined that I would be able to do this. The never ending walks, additionally the luggage and this in a city which is not exactly famous for its clean fresh montain air. The feeling not to struggle with breathing after every other step was wonderful. Even the stairs which I had to climp to get on board the plane were very easy. No challenge at all. With all honesty, it's just awesome not feeling sick and being constantly on the limits. I felt so - normal. And healthy. I bet no one would have guessed that I suffer from CF. That's what makes me so deeply grateful and I'm overwhelmed. In a few minutes we arrive in Zurich and I look extremly forward to embrace my girlfriend. This is the only thing which can make me even happier now. I look back to a very exciting but also tough time. I'm proud that I was able to manage all this. A further milestone in my experience with Kalydeco. There's only one last thing. I have to say thank you. Thank you to everyone who is involved - earthly and most probably also not earthly creatures. I am more than aware in what privileged situation I am.

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Mi

13

Mai

2015

Newsletter

Some small additional information. It seems like there are many new visitors on this blog especially from the US. I'd like to take the opportunity to inform you that there is a newsletter in place. This would keep you updated whenever I add something to this page. Feel free to register. You won't receive any spam and of course it's only used for updates from this blog and not for any other purpose. I'd be happy if you applied for it!

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Mi

13

Mai

2015

The unusual developement

Searching for some sun - that's why we decided to spend some days in northern Italy last week. After ten days of non stop raining in Switzerland our hands slowly turned into flippers and therefore we booked spontaniously two nights in Dorf Tirol. My feelings about this village are quite bad. We've been there last in 2008, seven years ago. Back then I felt terrible and my condition was pretty serious. So serious that had even taken two oxygene bottles with me. My radius was extremly small: Hotel room, pool, restaurant. That was it. Taking walks or riding a bycicle was simply unthinkable. In the end we even had to leave earlier. During a therapy session in the morning I was coughing blood the first time in my life. A very bad experience. We went home the same day where I had to go another two weeks in hospital for IV treatment.

Funny enogh the hotel we had booked this year was only a few meters from the hotel back then and therefore all these feelings flashed my mind again. Luckily this time it was completely different. No oxygene tanks, no blood-coughing-experience a 42km bycicle tour and a 1.5hrs walk. Already while we were driving there I felt the difference. There's a 2500m mountain which you have to cross and I always used to get sweaty hands, breathing issues and a very uneasy neeling. None of this happend this time.

This very positive development during these seven years is far from normal. Unusual in any sense since normally the curve tends to the opposite direction - down. I'm very happy about this trend and of course incredibly grateful. Every little change provides me with a positive feeling and altough my last lungs funtion check two weeks ago was still crappy I am more than happy with my current condition. I have got enough air to move, to do some easy sports exercises, to handle a normal everyday life and finally to live. And that's the main thing. Air to live... what else do you want. That's already more than one could have expected seven years ago. That's why I focus on all the positive changes and do not let me get demotivated from bad lung function checks.

By the way, in two weeks this blog has his one year anniversary. I will then publish some facts and figures about the visitors and their home countries here. Quite intresting, you'll be surprised... :) See you soon folks!

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Do

30

Apr

2015

Kalydeco - 13 Facts

You most probably realized that my updates became less regular lately. This surely is a good sign - it means that I can live a pretty normal life recently. It's no longer the all-energy-consuming fight against the disease, many things became easier and every day life just feels better. I'd like to put down 13 points on Kalydeco and its effect on me:


-12 months I've been taking Kalydeco now.


-11 months and three weeks ago I had my last IV therapy which means since I started Kalydeco I never had to do an IV again.


-10 kilos I gained during the first two months. From 66kg I went up to 76kg. This didn't feel right though and therefore I reduced it on purpose to 72kg. I am able to keep this weight without any effort. No longer do I need to fight for every single pound, no longer do I need to take 800 calories extra per day in drinks.


-9 years ago I had may first IV therapy. On May 8th 2006 I was the first time in hospital as an inpatient. Back then they told me that I have to get used to this and that I need to do this most probably once to twice a year.


-8 units of Insulin I had to take for breakfast a year ago. Due to the reduction of prednisone, the increased physical activity and the better general condition of my Body I could reduce it to one or two untis.


-7 nights per week I had to take oxygene to sleep - 1.5l/min. It helped me to recover quicker. Since my oxygene saturation improved to 95-97% I stopped this recently to see whether I really still needed it. I realized that I don't feel a difference when I wake up in the morning and therefore I sleep without additional oxygene now.


-6 right in lotto, that's how my doctor called it a year ago when he provided me with the news. I carried exactly that extremly rare mutation for which they developped a medicament. Meanwhile I fully agree with his Statement.


-5, but usally more like 10 mucus I was able to cough during a therapy session before Kayldeco. Nowadays I need to be lucky if I can produce one. There's simply nothing down there which I can mobilize.


-4 crystal clear improvements: improved oxygene saturation, increase of weight, much less coughing, no IV therapies. That's how Kalydeco worked on me.


-3 was the number of patients in Switzerland who were able to take Kalydeco a year ago (including me). Unfortunately only three persons for whom there was hope. I don't know how this number changed since then, but I'm sure it's still just a handful of people. Luckily Vertex continued it's research and the plan to come out with a new medicine which is suitable for many many more patients. They invented a similar product for people with a double F508del mutation, which is the most common one. Thank you Vertex! -> for those who are interested, try Google!


-2 pills a day... 2 simple little pills with the size of any other pill. I always dreamt of a medicament which can reduce the impact of CF. When I thought of that, I always imagined huge shots, IV therpies and an incredible effort. Never ever was I thinking of a little pill. Two of these small friends and the effect is sincerly unbelievable.


-1mg of prednisone - that's the dose I'm taking meanwhile. Before I started it was 20mg (!) and during rough times up to 50mg.


-0 days of sickness in one year. ZERO. Not a single day I was sick and couldn't go to work. For many years I had to stay home or in hospital for at least 14 to 28 days a year, sometimes even longer. When I started going to work despite the IV therapy this helped reduce the number of days off sick, but less than 8 days I year I never achieved. Now it's zero. Tat's even less than many "healthy" persons achieve. (And yes, touch wood!)


That's how I would summarize my year with Kalydeco. Many things became better, nothing got worse, only FEV1 could improve a tic more. But even if it's remaining the way it is now, I'd be more than happy. I do hope though, that also my health insurance realizes the impact that Kalydeco has on me and does not only focus on FEV1 since for me it would be an incredible set back if I had to stop taking Kalydeco. Lucky enough, I already received the approval for the next six months and maybe I manage to improve FEV1 also until september.


I'm not sure if it makes any sense at all to put the following on the English version of my page, but nevertheless I'll do it. There's a famous swiss radio presenter and comedian who suffers also from CF. He's kind of a role model when it comes to coping with the disease and he recently was on swiss television talking about his views. Unfortunately it's only in swiss german, but for those who understand a bit, here's the link (LINK  -> starting at 37:15 min)

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Mi

18

Mär

2015

Some investments for the future

Since my last blog entry was apparently somehow not promising, today's update will focus on the positive signs. And they can be explained quite easily with my last four investments. First of all I bought a "Theraband", a cheap elatsic band with with I can train my arms and legs. Then I extended my gym membership for another year and I'm heavily motivated to continue my soft exercises. Furthermore I bought a SPBR. SPBR? That's a Semi-Profi-Badminton-Racket. My performance didn't really improve much with the new gadget, but every journey starts with one little step. And last but not least, the most expensive present to myself, a complete ski equipment. Two weeks ago we were on our yearly winter holidays and I realized, that I am now able to surive 2000m over sea-level without the constant fear that I will find myself in a hospital in a few minutes. Two years ago we've been on the exact same mountain and I could hardly breathe - this changed completely this year. One time I managed to complete the full ride from 2020m to 1400m without a single break. Astonishing! At one point I even thought I had overtaken Bode Miller :-) It was so much fun and this is why I decided to dedicate myself more to winter sports.

From a medical point of view, I reduced once again my prednisone. For the first time in six years I am now down to 2mg. This is less than our lady sausage dog needs :) And the values are still very good. In the picture you see what used to be my enemy. This little zhing mesaures the oxygene level and the heart rate. And it's actually my finger in there - 97% and a heart rate of 54... Brilliant figures which I didn't even know that they exist...

In a nutshell, the tendency is still very good. And in six weeks, it's my one year IV anniversary. It's been twelve months since my last antibiotics Treatment. This would be my 9 year record. Before I always had to do the therapy at least on a yearly basis, sometimes even twice or three times a year. So can I please ask everyone to clap your hands once? - and then touch wood! :-) You don't need to send me cakes or stuff, instead you could donate the money to your local CF Organisation (the swiss one is www.cfch.ch). They really need the money and they will be extremely grateful for your donation.

Thanks a lot folks, and see you soon!

 

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Mi

11

Feb

2015

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.

 

Laters!

 

 

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Sa

03

Jan

2015

2014 - A Review

I know - it's been a long time since I last updated my blog. However, this is truly a good sign because it shows that a) I didn't have to go to hospital where I would have had time to write my blog and b) that I am able to have a normal life and that there's a lot of other stuff to think about than my disease. I managed to get through November and December realitvely easy. "Relatively" because beginning of December I had a small set back and I was coughing quite a lot. I convinced myself, that I can handle that without additional antibiotics and it actually worked out! Currently I feel pretty good and apparently my body is able to fight minor infections without medical support. An excellent experience :-)

2014 was indeed a very spectacular year, mainly of course due to the changes which Kalydeco brought. I wouldn't go as far as saying that it is a wonder medicine, but it still had some very positive effects, such as the increase in weight or the reduction of mucus. Nevertheless I can still not climb the nearby mountains and I guess I need to postpone this adventure for another few months or years. But I am happy with my current health condition and after all the most important thing is how you cope with your situation. You have to stay focused and positive and this will reward you with life quality. I am more than confident that I can Keep my current status or maybe even improve it a bit further. I am able to have a regular everyday life which is far from naturally. Many patients are no longer healthy enough to have a job or clean their appartments, etc... Therefore I am deeply grateful how healthy I am...

 

Coming to an end, I would like to say thank you to all of you. I received a lot of positive feedback and apparently Kalydeco not only helped me on a physical but also on a mental level. I am more open when it comes to my disease and can cope way better now with it. You can't really measure this effect with medical figures but it's still a very important factor.

 

Thank you and I wish you the very best for 2015 and of course that you all stay healthy and positive.

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Mo

10

Nov

2014

Merry Halloween

Yes - I know, it's either "Merry Christmas" or "Happy Halloween", but I am confused... When I was shopping end of september I actually spotted a shelf full of Christmas articles. Seriously?! Virgin Mary (if that's the proper translation) didn't even know that she was pregnant back then. The three kings were probably playing poker in some lame bar and the barn where the crib would be placed later was still a donkey parking lot. Come on, what's next? Easter bunnies on first of January? Or shall we celebrate the next Millennium in 2020? I am really annoyed by this whole "The earlier the better..."  attitude. And as a little sign of protest I post my rotten Halloween pumpkins. I know it was two weeks ago but I don't care. The look anyway crepier the older they get.

But now let's switch to the actual subject of this blog. My "course of health". Yes, I call it deliberately "course of health" because "course of disease" sounds always so negative. And I decided right now, that "course of health" is my personal "Word of the year 2014". Today I had my usual three-month-checkup and I must say my feelings are swinging between postive and negative. So first the not so satisfying facts. My lung function test as well as the "walk 6minutes as fast as you can " test were unchanged. I thought this should have improved. But I also have to say, that I had a horrible night with approximately three hours of sleep and I felt like I was hit by a car, no even by a truck (actually lets make it a space shuttle) when I woke up. Therefore I knew that it's not gonna end as expected. However the bright side is, that my blood samples were top notch, my weight is steadily at 72.6kg and my lungs are still dust-dry. Usually november was always the toughest month but this year that seems not the case. So either my body just forgot to switch the calendar or Kalydeco does still a great job. I go with the latter :-) Also I still manage to use the home trainer three times weekly and I feel really well. Summing this up, it's pretty clear to me that the positive effects predominate.

There's not much more to say... actually I'm thinking hard of a suitable ending for this text.... and the only thing which keeps crossing my mind is "Merry Christmas"!? Jeeeez......

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Sa

11

Okt

2014

Dear Kalydeco,

you have just been added the sixth man to your troop. You will receive your mission order once you've reached the operation area. Your comrades did an amazing job so far and I'm sure that you won't disappoint me either. We are facing an incredibly pwerful enemy. So far every opponent failed in reducing its power and you are the first generation with an effecrive weapon in this neverending battle. Most certainly you will be followed by improved forces but right now, all the hopes and expectations lie on your shoulder. I am very grateful that I can count on you and wish you all the best for your mission. And now: "Fiiiiiiiiiiiiiight...."


Above text just came to my mind and it shouldn't glorify war in any kind but I thought that this metphor pretty much matches the Situation.


By the way, if you'd like to read a really impressive story of Kalydeco, there's a german guy who's writing a blog on http://kalydecoforgermany.blogspot.ch/. That's the most stunning story I've read so far and it's written very in a very entertaining way.

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Mi

08

Okt

2014

Yet another goal achieved...

Recently, I was able to achieve a long time goal. I managed to climb a nearby hill with my bicycle. Almost 1000m altitude difference in two hours. Not too bad for a start. On my way back I had to realize that in switzerland a "bike route" in fact IS a "bike route". A perfectly well asphalt street turned into a gravel way which then again turned into a field path and finally I found myself on a 30cm wide dirt track, full of roots and stuff. In the end there was a huge mud field and there was no way crossing it. So I was forced to return. 200m difference in altitude through a thick forrest, that's not what you'd like to face when you're allready exhausted. At one point I really was on the edge of using the rescue-me-now-immediately-iphone-app but somehow I managed to return. Ok - the amount of swearing was severe and I'm not sure if I should have knocked on God's door that day... :) All in all it was still a nice little tour and if someone is interested in having the same experience, I am more than happy to share the route :)

5 Kommentare

Sa

04

Okt

2014

It's been a while..

...since I last updated you. Meanwhile there are two new Iphones available, it's getting dark at 7pm, the 2014 three-days-summer has gone and here we are in autumn again. Time for a brief review. Currently I'am healthy enough to go to the gym three times a week and it's success is clearly visible. Just the other day I found out that my body has actually muscles in the legs. What a feeling... The weight is stable at 72.6kg and this despite a further prednisone reduction. Currently I am taking 5mg and I've not been that low in years. I still rarely cough altough it's been a little more recently. Nevertheless I am still hardly able to activate mucus with the breathing therapy which I think is a good sign...

Furthermore my health insurance finally agreed on taking over the costs for the medicine which of course is again proof to me that also they are convinced by Kalydeco's effect. Currently they pay for another six months, then we need to review the situation again. I'm very happy and it's unthinkable how disappointing a negative decision would have been.

Other than that there's not much to say. I think I am facing now a crucial time period as october, november and december are usually the tough months. Almost every year I had to do IV therapies during these months. I am quite positive that I'm able to skip it this year. Let's see, I'll keep you posted....

0 Kommentare

Do

21

Aug

2014

The inner devil

After I was a bit disappointed after the doctor's visit I am back on track and fully motivated. I applied in a fitness center and started doing sports twice a week during lunch time. Well, at the moment it's only cycling but still, a 35 minutes exercise without oxygene was just not possible a fee months ago. Today was even the first time when I did not fell off the bike unconcious after 20 minutes :-) I hope I can keep up this motivation as the fight with the inner devil is not always easy... But a good friend of mine told me recently that he finally achieved that his inner devil left for good and that he now doesn't even come close... I'm sure I can do that as well.... :-)

-> translation of the picture: "Hey, I can already see the weekend!)

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Mo

11

Aug

2014

3 months - time for a review

Today was the day. I had the first doctor's visit after three months on Kalydeco and my personal feeling was supposed to be proofed by clinical facts, something for which my insurance also asked before they would start paying for the expensive medicine. Until now it's still offered by Vertex - thank you very much again! No wonder I was quite nervous when I arrived in St.Gallen. First stop X-ray, then a visit at the "diabetes doctor" followed by the lung function test and finally the appointment with the pneumoligist - all done within 2.5 hours - this hospital really rocks! (at other places in Switzerland you would need 2 days...)

The first meeting was a bit disappointing, the average blood sugar level of 8.1 was far from good and showed me that even the "blue angel" will not fix the blood sugar houshold overnight. I need to be more disciplined and therefore the usual measure - weight (estimate) - inject procedure is daily business again. Also the lung function check was not shockingly good, instead of my goal of 35% FEV 1 I only scored 31%. It's still an increase of 18% since I take Kalydeco but according to my personal feeling I expected more. Mr. pneumologist was nontheless very happy and therefore I continue on my path. The direction seems to be right and to be honest - I can't assume that after 32 years of CF I turn in to a super hero within 90 days.

Summing the things up it looks as follows after three months:

-Weight: 66kg vs. 73kg -> +7kg (11%)

-FEV 1: 26% vs. 31% -> +18%

-Prednisone: 20mg vs. 7.5mg (-62%)

-Oxygene level relaxed: 93% vs. 95%

-Oxygene level with little exercise: 86% vs. 91%

 

Apart from FEV 1 everything looks amazing and also for that one the tendency is correct. I wonder how it will continue and of course I won't stop fighting, but of course not dressed as in the picture (which by the way shows the very old traditional Uznacher freedom movement uniform :-) )

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Mi

06

Aug

2014

The little monsters

Unfortunately it's been a while since I last provided an update, but first I was to busy with finding trousers in my wardrobe which still fit and after that I was too annoyed to do anything. Funny enough I've seen a postcard today which pretty much match my experienced last week: "Calories are the tiny monsters which creep into your wardrobe at night and make your trousers tighter".. Only one single pair is left which the little bastards didn't find yet - which means I've got 7 pairs to give a way, so if anyone is interested, let me know ;-) Today I was even more frustrated, when I visited my favorite jeans shop and realized, that the trousers which actually fit around the hips, wave in the wind like these colored tibetan flags at the lower part of my body. Seriously, I can tell now that putting on weight is not always a walk in the park. In the end I nevertheless found one (more or less) fitting pair of jeans. But overall, this was far from a satisfying experience - and I really ask myself why we have to pay 150 CHF for trousers here, whereas in the US you pay like 30$. As far as I know it's been more than 20 years when the USD/CHF rate was at 3 CHF per 1 USD. Anyways, next time I might try it in one of these stores where you can buy these fancy towels for overweight people which you can then wear like ponchos.

By the way, in figures this means 71.8Kg, an increase of roughly 10% (or 6Kg) in 2.5 months. If this is going to continue in the same way, I'll be fat enough by Christmas to be slaughtered :-)

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Sa

26

Jul

2014

Some impressions

I attached some pictures of our holidays. You might need to click on the title to see them.

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Sa

26

Jul

2014

Project belly!

As I already announced before the holidays I'll start now with project belly. My physiotherapist showed me some simple exercises which I finally want to start with. For this reason I first bought one of these fancy yoga mats and my girlfriend created an exercise plan. Three times a week at least, maybe even four or five times. To motivate me she claimed that she will do the washing up and kitchen cleaning on every evening on which I do the exercises. Thank you honey!

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Fr

25

Jul

2014

The (never)ending fight with the weight

Today I finally managed to check my weight. I was very unsure what to expect as I ate much less during the holidays. Basically it was breakfast, a little salad or melon in the afternoon and a Pizza for dinner. I also omitted the high caloric drinks which usually provide me with an extra 400 oder 800 calories a day. Therefore I expected a reduction of my weight but... the scale shouted 71 kilos! This means despite all of this the weight increased by 1 kilo during the holidays and even by 5 kilos since I started taking Kalydeco. Never ever in my life was I this heavy and as we all know, these extra kilos can be very helpful in more difficult times. Next week I try to further increase prednisone. Currently I'm taking 10mg a day - I'm gonna change that to 5mg / 10mg alternating. Fingers crossed!

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Do

24

Jul

2014

2010 vs. 2014 - A comparison

It feels like it has been yesterday when we passed the Flüela and the Ofenpass to get to Italy and Bibione on the northern Adriacoast where we spent our summer holidays and yet we are back again since three days. It's time for a quick wrap up. Exactly four years ago we stayed at the same place in the same hotel and therefore it was the perfect opportunity to compare how I was feeling back then and today. In 2010 I was doing quite well but compared to this year it's a huge difference. For example the daily walk to the beach was much easier as well as the way back to the hotel after having dinner in the evening. I remember the exact spot where I always had to take a quick break to recover. This did never happen this year. Also we did much longer walks than four years ago. And for the first time in years I didn't have any digestive problems. Earlier my digestion always went crazy during the first few days in the holidays - not this time. Another thing I noticed was the easy feeling in the sea or the pool. Due to the pressure of the water I always struggled a bit with breathing in the water. But this year it felt quite easy and normal. Back home we compared the pictures we took last time with the ones from this year and despite the fact that I weighted 5 kilos less back then my face looked fatter and unhealthier - something which prednsion causes. To sum it up - Kalydeco really causes an incredible effect and I'm so grateful to having the opportunity to take it.

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So

13

Jul

2014

I hope it gets Messi...

Only a few hours to go until the final game of the 2014 Worldcup starts. Argentina vs. Germany, South America vs. Europe, Messi vs. Müller, beef vs. pork knuckle, underdog vs. top favourite... I might upset my German readers and also my colleague at work (Mike) but I'd like to say that I support the Gauchos eventhough I'm pretty sure that the German will win today (but PLEASE not 7:1 again...). Basically I don't care much which team is gonna win the game tonight as long as the referee is not acting again like he didn't ever lead a football game before... He was definitely the whorst man on the field yesterday. I think there are four main reasons why I would like to see Argentina as the winner: 1. The underdog bonus, 2. My girlfriend bet on Argentina before the WM started, 3. Silver-Lining -> Silver -> in Latin Argentinum -> Argentina (quite logic, isn't it) and 4. roughly eight years ago I was wearing the argentinian shirt when my girlfriend and I came together.

But now to the more important stuff. Kalydeco seems to be still causing brilliant effects. Yesterday's 90minutes walk started a bit tough but after a little while I found the rhythm and felt perfectly comfortable. A few months ago I was quite exhausted after such walks but yesterday I felt as I could do the same route again. Also, my body seems to got used to the 10mg prednisone and the usual "heavy" feeling after a reduction is over. Another intersting fact is, that there is still very little mucus and it's more like light yellow and no longer the dark green colour which it was before (I hope no one is eating right now :-)). And yes, my BMI is slightly below the "little overweight mark". 71kg = 24.9... not the perfect timing as the holidays at the beach are coming up but I'm gonna postpone project "belly" until after the vacation. Right now I'm just happy that I was able to slightly increase the weight despite the prednisone reduction. And as most of the CF patients are underweight I think I should be thankful for the extra kilos.

The day after tomorrow we go to Italy for ten days, therefore there won't be any update during that time. I wish you guys all the best until then and I'm looking forward to an exiting game tonight.

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So

06

Jul

2014

First fun then work

I'm sure everyone of you guys is bored today due to the missing football games in the evening and therefore I'm gonna use the opportunity to provide a further update and cheer you up a little bit. First of all  big thanks to my married friend Raffi who stepped by yesterday to watch the game - he's got a two day break in Switzerland after he has been in America for 2 weeks and goes to Italy tomorrow. I really appreciated it. Unfortunately yesterday's game was a neverending story and therefore it was 1.30 am when we finally went to bed. The bike tour for today had to be started under difficult circumstances, nontheless it went quite good. I almost did the whole 40km around the Obersee on the lowest support level on my e-bike, something I never managed to do before. Sadly enough the brunch break after 20km was a bit short and the waitress was a bit surprised when we left the big buffet already after 30 minutes. (By the way, my sweetie and her english class offered it - thank you!) All in all it was another successful trip and this makes me feel more and more confident for the future.

And finally, to cheer you up even more, a little joke which did not, but could have happened in my girlfriends class: Mother: "Did you enjoy your first day at school?" - Daughter: "FIRST DAY?! - Do you mean I have to go back tomorrow??" :-)

The married Raffi is the one on the left in the picture, the not-yet-married-Raffi is the one on the right. And of course also he (and his girlfried) deserve a thank you for yesterday's visit. The right-sitting-Raffi is the one who visited me to most to watch the games and he is most probably also the one who reads my blog the most. Thank you for your big interest, this really means a lot to me!

This brings me to an end and I wish all of you guys a very nice next week.

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Mi

02

Jul

2014

And there the dreams goes...

..of the football quarter finals. What a game yesterday - I'm still completely exhausted, but happy that I didn't lose my voice for good. The after-the-disappointment-sausage didn't really cheer me up but nevertheless, there are much more important things in life. And so I'm focusing again on my health. For the first time in three years I managed to serve civil protection service. Before, I was alwas worried that I couldn't do the soft physical work, but this time I felt ready again. And it went pretty good. Other than that I reduced my prednisone dose to 10mg, which is half of what I used to take before Kalydeco. My next goal is 5mg but of course I need to be patient because as we all know, prednisone is to be reduced very slowly. Maybe someday I get rid of that poison at all...

In two weeks I'm off for holidays and I hope that the mediterranean climate in Italy will help further improve my health. But to be honest, I'm already happy if it stays as it is now. More than a month has passed since the last IV therapy and there's still no sign of coughing. This is quite unusual and I am pretty sure that this is due to Kalydeco. Of course I will continue observing the almost eerie quiet situation in my lungs and keep you updated here. Now go back to work! :-)

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So

22

Jun

2014

The wind tunnel

After we celebrated the eight year anniversary of our relationship yesterday, my girlfriend and myself planned a little bike tour for today. I checked the wind conditions in Glarus as we wanted to cycle from Linthal to Ziegelbrücke. The wind direction showed 341 degrees and after checking in Google I came to the conclusion that this would be perfect tail wind. I put the bikes on the car and we drove towards Linthal. The closer we got, the heavier the flags pointed in the wrong direction. So we started already in Schwanden and yes it really seemed that I was wrong. We probably could have gone to the wind tunnel for the formula 1 cars in Hinwil and it would have been easier. The 20km we did feel more like 20,000km in my legs. However, it was a nice little trip. And interstingly enough, again Kalydeco showed its quality. Back in the old days I was already exhausted when I put the bikes on the car but today it was as easy as sitting on the couch. Of course, these are only small steps, but they go in the right direction and convince me time after time that Kalydeco really does have a positive effect on me.

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Mo

16

Jun

2014

Prednisone down - Weight up?

It's been a long time -

World Cup has begun,

Switzerland has won,

The luck hasn't gone.

 

I still feel well and my weight is supporting my feeling. The first time in my life I went above 70kg. This might also explain the suit incident of last Saturday and once again proofs the difference between men and women.

 

How women prepare for a wedding (guest only):

Monday: Choose the dress

Tuesday: Choose matching shoes

Wednesday: Change the dress

Thursday: Choose matching shoes

Friday: Change back to first dress and first pair of shoes

Saturday: 9am Hair-dresser, 11.30 dress and make up, 12am Ready

 

How men prepare for a wedding:

Saturday: 11.55 styling, 12am try the suit, 12.01 shirt is too tight! 12.02 try second shirt. Pray that the button will win the 16hours fight against the belly. 12.05 second prayer, this time that the air tube is stronger than the collar of the shirt. 12.06 fight with the buttons of the trousers. Round 1 - lost, Round 2: exhale, make belly small - won. 12.10 Air - check, shirt buttons - check, trousers - check, comment of girlfriend "You should have tried earlier if the suit is still ok" -check ;-)

 

Final comment: all buttons did a perfect job and the first time in a long time I had even enough air to dance (the dancing abilitie did not improve on Kalydeco though). I finally reached the 70kg, BMI is slightly below 25. If I go above 71kg I am a bit overweight. Should I try to prevent this (question to my doctor :-) )And I achieved all this despite a reduction of Cortisone from 20mg to 15mg. Kalydeco still seems to be working...

 

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Di

10

Jun

2014

How does it feel?

Some people were probably wondering, why 50km on a e-bike is a challenge at all. Well, to understand how 30% FEV1 feel (= the amount of air which can be exhaled in the first second), you can put a straw in your mouth and breath through it. The breathing gets shallow and the flow is blocked. Therefore, 50km on the e-bike are actually a challenge, if you do not believe, try the straw trick and let me know how it worked ;-)

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Mo

09

Jun

2014

Looking for the limit

After the soft training on Sunday, I really wanted to test me today. I started at 845am, trying to cycle around the eastern part of the Zürichsee. Usually, this always brought me to my limits. When I realized after 40km that I still "got air", I spontaniously added the little tour of yesterday. At kilometer 49 the battery died and I had to cycle the last 2 kilometres unsupportet by the e-bike. It was just my muscles and myself - and I can tell you that cycling a 24kg bike with a 69kg body on top is nothing like a walk in the park. In the end it was 51km done in 2.5 hours and many personal records were achieved: Longest ride, fastest average speed, longest ride without battery and the highest amount of sweat. All this was followed by the most refreshing shower, the most relaxing nap and the very best girlfried :-) Looks like Kalydeco is helping me more than EPO...

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So

08

Jun

2014

Take it easy!

The Saturday bike ride was harder than I thought and my legs and backside were really aching. Therefore we decided to take it easy and did a short trip around the hill nearby with a quick refreshing swim in the river. After that we had twice a BBQ, a sausage at 3pm and later some delicious beef steaks. To make sure I got back all the calories which I burnt before I had a caramel flan as a dessert. I don't want to lose weight after all! (Well, not yet...)

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Sa

07

Jun

2014

First bike tour on Kalydeco

Today it was time... The first bike tour on Kalydeco is done (well on the E-bike to be honest). I was pretty nervous because I knew that this was going to show how fit I really am and how Kalydeco is working on me. In the beginning I was a bit struggling and the head wind did not really support my faith but lucky enough it changed soon and I was already considering to apply for the Tour de Suisse. We did 36km in total at an average of 19.2 km/h which I am sure can be improved soon. But since it's only the beginning of the season I am quite happy with the outcome. The funny fact is, that this was the very first time when not the lungs came to its limit but the legs. A complete new experience to me. If my muscles do not hurt too much tomorrow I'm going to give it another try. I always wanted to cross the alps, but I guess for the time being I'm going to stick with the lowlands :-)

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Mi

04

Jun

2014

Small update

Since one week I've been taking Kalydeco now. I still feel the change but nevertheless I don't want to have too big expectations. My primary goals are to keep my current condition, to get rid of the IV therapies and eventually to reduce some of the medicine I am currently taking. Of course I would be more than happy if I could improve my lung function but I have to keep in mind that extreme spikes in FEV1 are exceptional cases. Time will show how it's going to be in my case...

And if I should lose my focus, I'm sure the cow in the picture lost it as well but it still seems to be happy and just decided to take a nap. I'll do the same - naps do always help! ;-)

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So

01

Jun

2014

A perfect Sunday

After a very early cleaning rush of my girlfriend we had a relaxing brunch and afterwards went to the mountains for a few hours. Filled with sun in our hearts we had a barbecue for dinner. Because I'm still unsure whether I should go for a beer I stick with a non-alcoholic one for the time being.

From a health point of view my condition is still rising higher - a few weeks ago I would have been completely exhausted after such a cleaning session. Today I could manage it very easily - well at least physically :-)

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Sa

31

Mai

2014

First steps

Yesterday, for the first time since months, I went for a walk with my girlfriend and her sister's dog. The difference between now and back then is simply amazing. I could do the 30 minutes very easily and I even managed to have a conversation while walking. Something which was unthinkable before. And today we played badminton. Ok fine, it was probably not a hordcore sports session and after 10 minutes the air was gone. I was a tiny little bit disappointed but when I realized that it took me much less time to recover afterwards I was happy again. It still feels just amazing!

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Fr

30

Mai

2014

Hope?

I've just checked out the bottom of the Kalydeco box. I think it's written 'HDPE' there but to me it looks more like 'HOPE' :-) Generally I think I can feel the first changes. Walking seems to be not as difficult as before and I already climbed the first stairs. The weight is more or less unchanged but I feel how I am hungrier than before. I look forward to the spinach tart this evening eventhough I would prefer a 25 oz's cordon bleu. Ok, to be fair you have to eat healthy sometimes :-/

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Do

29

Mai

2014

Thank you!

I want to take the opportunity to thank all the authors in the comment section for the wonderfull writings. I am deeply shaken by your thoughts and it's making me feel more confident. Currently I am fighting with my expectations as I don't want to rise them indefinitely. After all it's still not sure how Kalydeco will change my life and to what point my lungs are able to recover. All these years must have left irreversible damages which not even Kalydeco can cure. The question is how serious these damages are. To answer that it might take some weeks/months/years. But at least I can clap my hands once I know it :)

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Mi

28

Mai

2014

I am number four!

I am taking already the fourth pill of that miraculous medicine. I think I start feeling some change, breathing seems to be easier but it's hard to tell whether this is really due to the medicine or whether it is just my mind which is flyinig high. In the end, I do not really care, the main thing is that I fell better!

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Mi

28

Mai

2014

Becoming clean

Yesteday I did my physio therapy for the first time after I started with Kalydeco. And I was quite suprised by the stuff which came out of my lungs. Usually, after an IV therapy they are as dry as the Sahara desert in summer high noon and it was the same when I finished it last Thursday. Yesterday evening however something was going on and I managed to cough quite a lot. Let's see what other treasures are hidden deep inside...

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Di

27

Mai

2014

You want fat? - I'll give you fat!

You're supposed to have your Kalydeco pill with a fatty meal. So I thought I'll do that really properly and ate a two day ration of fat. A 650g (23oz's) cordon bleu (pork stuffed with lots of cheese) should do it. I don't know for sure whether it was the effect of Kalydeco, but I still felt a bit hungry when I finished it...

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Di

27

Mai

2014

The grapefruit incident

It must have been five years since I last had a Capri Sonne. This afternoon I felt the urge to buy one. After the first gulp I hesitated. Could it be... I checked out the back of the "bottle". Crap - it actually does contain grapefruit (the only thing which you are not allowed to eat or drink when you're on Kalydeco). Well done Marco... Apart from that no change so far. Ok, it0s been only 4hrs and 45 minutes. The body might as well need some time to change after 32 years...

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Di

27

Mai

2014

10 o'clock - showtime!

10.00am, BP petrol station Wetzikon, it's time.. With some nuts and fresh water I take the first "Blue Angel". Costs:

 

-1 Evian: 3.80 CHF

-Nuts: 1.20 CHF

-1 Kalydeco pill: 410.70 CHF

-The effect: maybe priceless

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Di

27

Mai

2014

It's arrived!

The very expensive has just been delivered. If the postman knew what he had just given me... In 55 minutes I will take the first pill.

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Mo

26

Mai

2014

Soon...

The blue angel is on his way. My pharmacist just called and told me that they will deliver the package on Tuesday between 7am and 9am... How should I be able to sleep now...

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Mo

26

Mai

2014

Before it starts

Heavens present did not yet arrive. I hope the 56 little pills are on the way. Until then, I'll continue the usual daily therapie which involves:

-2x Colistin inhalation per day

-2x Alvesco per day

-1x Spiriva per day

-1x Onbreez per day

-in the evening NaCl 4.5% inhalation followed by physiotherapy

-20mg Prednison in the morning

-3x Zithromax per week

-Creon with every meal

-Insulin with every meal

-300mg Xolair every other week

-1x Auqudek's (vitamins) per day

-1x Calcimagon per day

-Levemir (insulin) in the evening

-phyisotherapy once a week (at the therapist's)

-Aclasta infusion once a year

-IV therapy appr. every six months with Obracin and Meronem

 

My current data:

-weight 66kg (132pounds)

-FEV1 26%

-O2 saturation (calm): 90-94%

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