jueves, 15 de enero de 2015

When life changes in an instant - Atypical Hemolytic Uremic Syn. (aHUS) community - RareConnect

When life changes in an instant - Atypical Hemolytic Uremic Syn. (aHUS) community - RareConnect


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A transplant changed my life - read the story of Babarain who is living with atypical hemolytic-uremic syndrome

When life changes in an instant

From the beginning of my illness over dialysis to the long awaited transplant.
Written by Babarain, published 17 days ago.
When life changes in an instant
After my dad got sick with testicular cancer, I became the second person in our family to have to suffer a stroke of fate.
Everything started on August 13, 2009. I was 19 and had completed my high school diploma two months earlier. So I thought nothing of it when I wasn't feeling well for a few days, couldn't eat anything and lost weight. "That is stress," I told my mom when she sent me to the doctor. "I am fine." After I threw up a few times, I went to the doctor after all, who sent me to the hospital immediately.
In the hospital they briefly thought that I was pregnant since the pregnancy wasn't 100% negative (my blood was already that bad at that time). The end of the world for me, after all I was 19! In retrospective, it would have been the greatest to have a child.
They were able to discover fairly quickly though that I have a form of hemolytic uremic syndrome. Since I wanted to be special, I chose the atypical HUS. The doctors were very honest and said that I would be better off in another hospital. So after one night I was transported to the General Hospital of the city of Vienna.
After that it went downhill. My condition worsened rapidly and after 3 days of plasmapheresis the doctors decided to hook me up to dialysis. My first dialysis took place on 08/18/2009. Initially, I had plasmapheresis and dialysis daily, at some point this was stretched out and after just under half a year I only had to go to dialysis every 2 days.
After just over a month I was allowed to leave the hospital. Off and on I narrowly escaped death a few times and spent 11 days in the intensive care unit. I cannot remember that time too well anymore. I was only transferred to the intensive care station thanks to my sister and mom. I didn't find out about that until recently. Back then I was told that unfortunately there was no bed available for me in the regular station.
I have waited longingly for a call for 4 years. I had already written lists of what I wanted to eat and drink when I received a kidney and most of all what countries I wanted to visit. It was so unreal since I was waiting for a so-called "cadaver donation" and didn't know when it would happen.
There were highs and lows but overall you couldn't tell by looking at me that I was sick. After 4 years, on 08/15/2013 the phone call came just before midnight. I was so overwhelmed that I drove to my parents and cried. The burden that falls away is simply immense. At the same time, even though I didn't believe it for 4 years, fear grew. Now, my greatest wish: to become "healthy" again, would be fulfilled.
One day later, on 08/16/14 the transplant surgery took place. On my first anniversary I celebrated my second birthday. I spent a total of 17 days in the hospital before I was dismissed.
In the beginning I received plasma infusions every 2 weeks. Since I had an extreme allergic reaction to this, the doctors decided that I had to be something special again. After all, I had already chosen atypical HUS. After going back and forth for a long time, it was decided to administer the most expensive medication in the world to me. Soliris. I now receive it twice a month.
I am 25 years old now and received my last dialysis to the day exactly 4 years after my first dialysis. I have had my transplant for 16 months now. My kidney and I are doing great and I am so grateful that my quality of life has improved so much.
There is one thing I had sworn to myself, my family and my friends: When I receive a kidney, I will fly to the United States. On 05/18/2015 the time will have arrived. New York, here I come.
I thank the woman who had to die infinitely for returning my former life to me. Many view her transplant as a foreign object. Not I. This is my kidney now. It is responsible for me being able to live. It ensures that I am doing well. It makes me laugh!
I took the attached photo immediately after the transplant operation. It was hanging in front of the operation room.

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