ARPKD| CHF Alliance
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Meeting Rianne, Diagnosed in Adulthood

Greetings from Holland!

I had a very normal childhood. I am born on the 19th of April, 1987. Everything seemed to be okay and I was a regular student at school.  After graduation from high school I went to a college to become a nurse.  I went there in 2003.  Till then everything was okay with me.

At the end of the first year from school I had to do 10 weeks of working in homecare.  That  is a job where nurses come to people at home so they can stay in their own house without needing to go to a home for elderly people.  Of course I was tired, but I thought that was normal because of all the new things I saw and learned.

At the end of April, there was a holiday planned with my brothers and parents.  It was just after my 17th birthday.  We planned to go to Germany for a week.  The last day before I had my holiday, I was working, suddenly I felt cold and then warm, then cold again.  It changed with every heartbeat. Cold-warm-cold-warm...

Then I felt very sick and had to throw up. I saw a lot of blood, but first I didn't think it was that big a deal, because I had just eaten a sandwich with strawberry jam.  I went home and was feeling okay, but just very, very tired.  I couldn't eat anything without throwing up again.  So I thought I just had the flu.   Two days later we went to Germany.  That was on a Friday, but Sunday I had fallen asleep in the afternoon and my parents tried to wake me up.  That was very difficult, because I was very tired and my skin was very white.

I went to a normal house doctor and he saw immediately there was something terribly wrong with me.  He sent me to the hospital and they examined me.  Almost a week later the doctor thought that I had ARPKD/CHF.  There were arteries in my esophagus (I don't know the English word).   My kidney's were large (they are 20 cm now), my spleen was coming out under my ribs, and my liver was big.  I had a very high blood pressure, but just 25% of the blood.  I don't know if you also use this term in your country, but my HB was only 2.8 and normally it’s between 7.5 and 8 for females.  It's something that tells you how much red blood cells are in your blood.

After a week I went with an ambulance (which was very exiting of course) to a big city in Holland, so there was no longer a need to speak the German language.  I was very happy with that, because my English is much better than German.
 
Well, know I am 20 years older. I'm still feeling fine. I only take medication against the high blood pressure.  The only thing that really changed my life is the sports.  I used to gym a lot.  I don't know how to tell that in English but I jumped high on a trampoline and made rounds in the air and all of that.  They told me that it is too dangerous because of the chance of my spleen bleeding, and well... I don't want to die yet!
 
In the beginning of July I received my diploma, and I am now a nurse.  I am very proud of my job where I help people and happy that I don't need them so much for myself.  At the end of this month I have to go to the hospital for a talk with the kidney specialist.  I am happy that everything is going so well with me.  I have a wonderful family and friends and a very sweet boyfriend, so I can't wish for more!

Rianne Hammers
The Netherlands
 

   

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