A transplant changed my life - read the story of Babarain who is living with atypical hemolytic-uremic syndrome
When life changes in an instantFrom 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](https://www.rareconnect.org/uploads/articles/284x222/f56d49e3e48ef17c845b9edb085cccd1da0cc1e0.jpg) 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. Latest Atypical Hemolytic Uremic Syn. (aHUS) Community Activity |
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