Back to life
Marius, Marius, lung transplant since 2012 at the age of 12 (living lung donation)
My name is Marius, I am 20 years old and have suffered from the chronic metabolic disease cystic fibrosis since birth. My "home hospital" was the St. Josef Hospital in Bochum. I was treated there from the beginning in the pneumology department. The physicians predicted a mild course for me. However, this prognosis was only to come true until I was about 10 years old. During Christmas 2011, my physician at the time broached the subject of a lung transplant for the first time. A big shock for my parents and me. At the age of 11, children should actually be playing with friends, pursuing their hobbies and enjoying life. However, I had to deal with a transplant.
In January 2012, I went to the Hannover Medical School (MHH) for the first time for an evaluation. This involved numerous examinations and informative discussions. They looked at my state of health in order to decide whether I needed a new organ or not. The question was answered relatively quickly, so I was put on the waiting list at Eurotransplant a short time later. As my state of health continued to deteriorate, I spent
the waiting time in the pediatric intensive care unit in Bochum.
"From then on, only machines kept me alive."
It was a Sunday when a physician approached my parents and told them that I was to be transferred by helicopter to pediatric intensive care unit 67 at the MHH because my values were continuing to deteriorate. It was the time around carnival. While my classmates were happily celebrating carnival together, I was in the pediatric intensive care unit in Hanover. Although the surroundings and everything was unfamiliar to me, I didn't feel uncomfortable. On the contrary. The physicians and nursing staff were really nice and very caring. Thanks to everyone's great work, I was nursed back to health so that I could be transferred back to Bochum after 10 days. There the wait for the long-awaited phone call continued.
Friday, April 13th. A groundbreaking day for me. As I had needed permanent support with my breathing for some time and was getting worse, I was transferred to Hanover again. After 2 days, I was connected to a heart-lung machine (ECMO) and put into an artificial coma. From then on, only machines kept me alive.
"My values deteriorated from day to day and time was running out."
Back in Bochum, my parents had already approached the physicians treating me about donating living lungs. After my physician initially said that a donor organ had been found for every one of his patients to date, the suggestion then played an important role. The first blood tests were carried out on my parents in Bochum. Many more tests followed at the MHH and my parents were put through their paces. Meanwhile, I was in a coma and didn't notice any of this. Fortunately, all the factors, such as the blood group, matched. During the preliminary examinations, however, my mother was found to have a heart defect. The operation was on the brink. My values deteriorated from day to day and time was running out.
"Since then, I have carried one lobe of my mother's and one of my father's lungs under my heart"
On the evening of April 25, 2012, however, there were heated discussions about the planned operation. The chances of success were too low to justify the risk. Nevertheless, the physicians decided to go ahead with the life-saving operation, which would also repair my mother's heart defect. One day later, in an operation lasting several hours, I received a lobe of each of my parents' lungs. Since then, I have had one of my mother's lung lobes on the right side of my chest and one of my father's on the left side, under my heart. The fact that I made it to the day of the operation alive at all is thanks to the great team at pediatric intensive care unit 67.
"When I saw my sister, I smiled for the first time in my new life"
After the operation, I spent quite a while in the pediatric intensive care unit. But I have to say that I felt very comfortable and protected there. However, I had lost a little of my courage to face life. I could hardly move independently as my muscles had deteriorated. Nothing brought me joy anymore and I could no longer laugh. Until the day my little sister was allowed to visit me for the first time. When I saw her, I smiled for the first time in my new life and was beaming. An unforgettable moment for me to this day.
My father went to my school to record video greetings from my classmates, who gave me lots of encouragement and were already looking forward to seeing me again. I also received countless video messages from friends who meant a lot to me and gave me new strength.
"After two months, I was able to be transferred to the normal ward"
The nurses did a great job to give me back a little courage to face life. They organized a barbecue on the balcony of the ward. It was also the European Football Championships at the time and, as I'm a big soccer fan, I was given a TV by my bed to watch the games so that I (and some other interested physicians) could follow the matches. A lot of physiotherapy and muscle-building training with a personal trainer improved the situation so that I could be transferred to the normal ward after two months.
"At the moment, I'm not fighting for myself, but for the patients on the waiting list."
On July 10, 2012, I was finally discharged and could go home. Real friendships have developed during my time at the MHH. Every time I have an outpatient check-up, I drop by the pediatric intensive care unit and am happy to see familiar faces. I am still in close contact with some of the nurses and physicians.
I'm doing very well today. I graduated from high school in 2019 and am currently studying to become a teacher for special needs education with a focus on vision. My goal is to become a teacher of the blind later on. In my free time, I like to play tennis or hang out with my friends. I am also very committed to organ donation by doing educational work in schools and on social media(https://www.instagram.com/marius_schfr/). It's an issue that affects us all. At the moment, I'm not fighting for myself, but for the patients on the waiting list. It is important to deal with the topic of organ donation, to have an organ donor card
and to make your decision.