Hi, I am Crista Lint-Kloppenburg, 35 years and I have Cystic Fibrosis.

dutch version -click here-

I was born with a big belly and skinny arms and legs.
Mainly I had problems with my intestines and that's why doctors thought I had celiac disease. Untill I was 6, I had a gluten-free diet. When I was 6 the doctor told us that my pancreas did not work, so I needed some pills for that. During that time, I ate for the first time normal bread! That was a big party!
Untill my twelfth year everyting goes well. 

 
What's Cystic Fibrosis? but I often had some colds and I was coughing more then other childs. One day, my mother and I were reading a dutch magazine, an article was about a young girl who died because of an illness called Cystic Fibrosis.We never heard about that disease, but the story was just like my life. We were very worried and went to the child-doctor again. The doctor confirmed that I had the desease, but he did not want to tell it allready. 
What are the symptoms? We were very surprised, angry, but also glad, because we did not have many worries before!
A simple sweat-test was done and yes, I had CF.After this time, I got more lung-problems, I needed more medicine, everyday inhalers and I had to go to the 
physical therapy for percussion on my back and chest.
I didn't knew any other child with CF, so that same year I went on camp, called 'stichting Fibrose kinderen Op Kamp'. A great way to meet children with the same disease.It became very clear that the disease excist in different levels. 
read my CF-story Some children were very active and some allready need oxygen and were sitting in a wheelchair.
After one camp/year some children died. I knew at that time that CF could be a terrible disease. 
Formerly they told us that I wouldn't become 15 years old. Every 5 years of my life I realized I made it that far! At my highschool I did not like gymnastic and other sports very well, only because I noticed that my condition was not as good as the other kids.
But after school I did gymnastic and ballet for 10 years together with good friends.
watch my life-quilt When I was 14, I started to get intestine-problems. 
After 3 terrible years by searching, operations etc. 
they found out that I also had the Crohn's disease . 
So a stoma was placed. Many years, I thought it was more terrible than CF, because this was something you could see! Gladly my parents and I always did everything. It was very important for me to do everything, to try everything etc. 
When something was too difficult for me, I still tried to do it another way!
CF-links When I became 18, I rented a room in Weesp (near Amsterdam) because I was able to do a study to become an occupational therapist. Everything was going okay, sometimes I had to go to the hospital for about 3 weeks (for intravenously medicines) . So I did the 4 years-education in 4 1/2 years. It was a great time, for the first time I went out with friends, 
because when I was younger I was in hospital a lot. 
I made a couple of nice friends and enjoyed the city Amsterdam!
To find a job in Amsterdam was very difficult, so I decided to go back to my parents home-city, Vlaardingen. I founded a nice home, downstairs and everything went well. I had some friends/dates, but sometimes the boy did not like the unknown future and said 'goodbye'. I did not know if it was possible to have children. The doctors adviced me 'no', but it was hard to accept that!
In 1993 I met Frans, when we were 14 we were in the same hospital, many years later, it seemed to be we were living in the same street! We were engaged in 1995 en in 1997 we got married! It was a beautiful and emotional day! In 1997 I also get diabetes, on elderly age some CF-people will get that too. I need insuline 4 times a day and I must be more allert to eat on time! 
I worked for 7 years as an occupational therapist in a nursing house. The first 2 years i worked for 32 hours a week, later on the doctor told me to work only for 16 hours, because it became too mcuh for me. In 1997 we decided to quit my job, because I only lived to work and I was too tired to do anything at home after work.
It was difficult for me to do nothing, so in those years I did some babysitting and voluntary-work. 
I also teached elderly peoply how to work with the pc!
The last 10 years I lay in the hospital for about twice a year. It's never funny, but we get used to it. 
The bad thing is that it's getting more and more difficult to give me intravenously medicine, because they could not find my vains!
Since october 19th, they placed after 3 efforts a porth-a-cath. So for the next time of a hospital-period they can give me right a way the antibiotics. In the past I had a pass-port. but after some months it was closed, 
so now I must give myself Fragmin-injections. In all those years I become more wisely, formely I did all the things, even when I was feeling sick to the last second, now I go earlier to the hospital and that's why I am earlier getting feelling better. I do not enter smokey area, formerly I did and the same night I was coughing the whole night!NO, I do not want that anymore!
After long talks and thoughts we decided not to have children, although it is a big wish! The pregnancy and the whole package of raising a child will be too tough! When my lovely nieces and nephews or other children visit us, I notice it makes me too tired! We have 3 lovely cats named: Ricky, Chess en Nala
The last few years some CF-friends died, that's difficult to accept! Gladly we are both still positive and enjoy our life. My biggest wish was to go to America, at this point we have visited it 3 times! My best advice is: no matter how tough it will get,always make plans and enjoy the preparations and the road to receive it!
februari 2002
it's getting more difficult, during my last stay at the hospital, I know I need Oxygen at home too. The last days I was very tired. Now I need 1 liter at night,2 liter when I am moving and 0 liter when I sit down.Now I notice that it's better to breath. I am not used to it yet. I can go outside, 
but I must take with me the tank of oxygen. We bought a trolley, so it's easier to transfer. In our house there is now a big machine, it makes oxygen out of the air, I walk with a long tube in my house.
They can not do a lungtranspant, the vains are too bad to give me directly the medicine. It makes me very sad, but in the mean time, still in my heart, I allready knew it!
(so please be careful with your vains and start soon enough with a porth-a-cath or passport.
My friends and family are very kind, I notice that I am more depending of them, but it's nice to hear and notice that they are ready to help me. Thanks fooks!
Now I must get used to ask for help and to accept it! ;-)
 March April 2002
I allready have had 2 new stays at the hospital. one for lung-bleedings, so they had to embolized me again. It 
is not a very scary thing to do, you must lay down for a long time and they put a catheter into the vain 
(above your leg) they put a liquid in and so they can find out were there is a leak.
They founded 2 places. by injecting some kind of glue they can fix the leaks. 2 days after that day 
everything went okay, the days after those days were horrible, I had pain and cramps everywhere!
I allready had a lot of pain in my arms/shoulders because of a frozen shoulder, and I also walked along with 
a lot of pain between my ribs and lumbal-back. Problably the pain will be from all the coaghing, so you can feel it everywhere! normal pain-killers wouldnt work anymore, so now I needed MS Contin and Tramal (morphines)
The other stay at the hospital was just because I was tired, scared for the pain and caughing. Also for the first time I was scared to get no air/not able to breath! After a few days they had to remove the porth-a-cath, the vain was thrombosed. That makes me very sad, because now they are not able to give me intravenously medicine.

May 2002:
I am home again, they can not give me medicine, but they even do not know what to give me, so I must decide what to do, they can try to place a porth-a-cath again, but after 2 times, after lot of troubles, pneus etc. I told them not to operate me. 
I think there is a limit and my body and mind says: STOP PLEASE!! this is enough!
I do not say quit everything, but this way of living is not my kind of living, 
especially the pain is terrible to have. but now the pain is under controle and my taste is okay now too!

june 2002:

The first days I was feeling very bad, independant, scared and sad, I must say that everything goes well now! Because of the pain-killers I can not drive yet, but there is allways someone who will bring me somewhere. So I can still visit friends and teach someone things behind the pc. I do not have those horrible coughings, those made me a bit scared and now I can do more at home. The important thing is to be smart with the use of your energy during the whole day and week. now I know, I can do one big activity at one day (b.e. go and see a friend) and the rest of the day I must keep me quiet and maybe rest for a while. It's still no big fun, but I am sattisfy with it!

 

july 2002:

The reason I (Frans) am writing this, is to end Crista's story.

 

Crista's condition got worse in the beginning of july. She was in a lot of pain and was very tired all the time. After a visit with her doctor she was admitted on july 18. We both knew this could be the last time she had to go to the hospital. The antibiotics Crista got did not work and Crista decided it was enough. During the last week of her life a lot of friends and family came to visit and to say goodbye.

 

Finally Crista died, age 35, on july 28 in Dijkzigt hospital (Rotterdam)