JANNIK’S STORY

Who am I

Three months after my birth, my aunt noticed a yellow color in my eyes. She immediately recommended that my parents should go to the hospital. At the Elisabeth Children’s Hospital in Oldenburg, they couldn’t help me because they are not specialised in liver diseases. Due to the urgent need for help, they sent us to the MHH. There, doctors quickly diagnosed Progressive Familial Intrahepatic Cholestasis Type 2.

Experiences

My life before transplantation.

After the diagnosis, I was first treated with medication that allowed my bile to drain better. After a few months, I received a bile bag so that excess bile did not remain in my body. I had the bile bag until the liver transplant in 2010. The bile bag needed to be changed if liquid leaked.

My parents told me that shortly after the surgery, where I got the bile sac, I was on the verge of death twice. The reason was that my bile pulled the salt out of my body. My parents recognised this by the fact that I became apathetic and soon after unconscious. Because I didn’t eat anything, I didn’t get any salt in my body, which of course also intensified it.

In kindergarten and pre-school, I needed help changing the bile bag. For this, my mother always had to come. When my bile bag was full, I simply poured the bile into the toilet. To educate my classmates about my illness in elementary school and fifth grade, my father came to school once. During this visit, all questions could be clarified, and acceptance increased.

The biggest challenge for me, however, was the itching. It took a lot of joy from my life. No matter where or when, there was always a place that itched. My body was often swollen in many places. In order to relieve the itching, several treatments were carried out.

The first treatment was MARS dialysis, during which my blood was purified. For one week, I was on dialysis every day for about nine hours. The dialysis helped for a couple of months, but afterward the itching returned. Another treatment was a weekly tanning bed therapy. However, this also only helped for a few hours, which is why the therapy was stopped again.

Nevertheless, I was able to lead a largely normal life. I met up with friends and played soccer and table tennis. Through this, I was always actively involved in life. Especially when I did sports, I even forgot about the itching. The only problem I had when playing football was that I was always the smallest and weakest on the field.

In addition, before the liver transplant, I hardly ate anything as a child. I never had much of an appetite. Instead, I was fed through a stomach tube for the first few years. It wasn’t until I was five years old that I started eating by myself. I learned how to eat at the University Hospital Graz. My first meal was a boiled egg for breakfast, which amased my mother.

However, my diet initially consisted only of noodles and rice pudding. After school, it often happened that I sat at the dining table for two hours with the food in front of me. One food that I particularly enjoyed was pizza margherita. As a family, we therefore built the tradition of eating pizza every Saturday.

The transplantation itself

2010 was the year my life changed. On 25 November 2010, my parents received a call from the MHH. They had a liver for me, and we were asked to come to Hanover immediately. I was picked up by an ambulance together with my mother. My dad and brother followed a short time later.

On 26 November 2010, I received my new liver. It was a left split, meaning the left half of an adult liver. After I woke up, I immediately noticed the biggest change: the itching was gone.

After a few days, I was already able to sit up again, and after about two weeks, I could walk again. The doctors were very impressed by my energy.

The only burden, which unfortunately also lasted during my hospital stay, was a stomach ulcer that developed. This caused me severe stomach pain.

Nevertheless, I mostly remember my time at the MHH positively. Of course, there were days when I wished to be discharged immediately. However, the nurses and doctors at the MHH were very kind and helpful. Station 64B also had many games that I could play with my family.

One situation that particularly impressed me was when a nurse woke me up in the morning with a cloth full of snow. Even though it seemed mean at first, this moment showed me how close and caring the nurses were. Fun fact: even many years later, the nurses still recognise me.

On 23 December 2010, I was discharged from the hospital and was able to spend Christmas at home with my family.

For the first two months, I was not allowed to go to school or meet my friends because of the risk of getting sick. My immune system was very weak at the time due to the medication, and the risk of infection was too high. Instead, I was homeschooled by my teachers.

Short story after transplantation

After the transplantation, my life became normal. Four to five months after the transplant, I started going to school again and began participating in football training. My life was quite normal. I only had to take pills once a day before school.

I started eating more and trying different foods. I grew faster, and after a short time, I was no longer the smallest in my class.

Thanks to the liver transplantation, I am very healthy and can live my life like a normal person. I have no limitations. I can do everything my friends can do.

In the meantime, I have stopped playing football. Instead, I now play badminton and tennis. In addition, I am volunteering in organised sports and politics.

Furthermore, after graduating from high school, I studied public administration. I have now been working for four years as a clerk in the economic administration of the Oldenburg Police Headquarters.