When the heart fails, the only hope left is a donor heart. But the waiting lists for donor organs are long and willingness to donate is declining. In Germany almost 9000 people stand on it. But two sufferers from the same family are lucky.
“He’s always with me,” says Peter Fricke about the unknown donor, whose heart has been beating in his chest for more than 30 years. “Maybe he’s right behind me and nudges me if I say some shit.” He was never interested in whether the donor was a man or a woman. “What matters is that he did something great. I am infinitely grateful to him for the gift of 32 years of life.” Peter Fricke is sitting in the garden of his house in Bockenem, around 70 kilometers south of Hanover. On this late summer day he remembers December 27, 1990, and to this day he celebrates this day as his second birthday.
The 35-year-old father of three small daughters was in the Vinzenz Hospital in Hanover at the end of 1990 and had been waiting for a donor organ for months. “The morning after Christmas, the nurse came in and said, Mr. Fricke, it’s starting. They’ve found a heart for you. We’re going to the medical school now.” When he wakes up after the operation, the first thing he sees are white sheets. “I thought, are you in heaven now? But then the same sister came around the corner and I knew you made it!”
Peter Fricke is not the only one in his family who has to go through such a difficult time. As a young adult, his daughter Julia also needs a donor heart.
Father Fricke recovers just as quickly as the protracted myocarditis made him terminally ill. Although he has to take medication every day and has a disability card, he doesn’t let that stop him. The former Bundeswehr soldier is rejoining his employer, an insurance company. “I worked for 17 years after the transplant,” says the 67-year-old. “Up to a burnout, probably triggered by Julia’s transplant. I blamed myself for not having our daughters examined after my heart disease.”
It is questionable whether anything would have been found at Julia Fricke early on. According to her doctors, her heart was damaged when her son was born in July 2004. When the 20-year-old continues her training as a nurse after two months, she is constantly tired and exhausted, she has a resting heart rate of 140 and shortness of breath. An examination reveals that the heart is already greatly enlarged, the mitral valve – one of the four valves of the heart – does not close properly.
What did the young mother think when the doctors told her that she would need a new heart in the next ten years? “I immediately thought of my funeral,” says the 38-year-old. “I knew from my father how long the waiting times for donor organs are.” Peter Fricke has been involved in self-help for decades. At the beginning of September he relinquished the chairmanship of the Federal Association of Organ Transplant Patients and was appointed honorary chairman.
There are currently 8,524 people on the Eurotransplant waiting list for a donor organ, of which 685 people need a new heart (as of August 31, 2022). The non-profit foundation coordinates the procurement of donor organs in eight European countries. In April, the German Foundation for Organ Donation (DSO) reported a dramatic drop in organ donations in the first quarter of 2022 compared to the same period last year. According to the DSO, the background is, among other things, the workload in the clinics due to increased staff absences due to corona infections.
The German Society for Thoracic, Cardiovascular Surgery (DGTHG) also complains about the lack of organ donors in Germany compared to other countries. At present, the removal of organs after death is only permitted if the deceased person has given their consent while they are still alive or their relatives have given their consent. In other countries, organ removal from a brain-dead person is also permitted if the person has not expressly objected to an organ removal.
Julia Fricke also had to wait for a donor organ. In March 2006 she was put on the transplant list, in November 2007 she finally got a new heart. To this day she is disappointed that she was not able to continue her education after the operation. In the meantime, the operator of her clinic had changed. “I was a single parent. What do you do to avoid getting Hartz IV?” At times she worked 200 hours a month in a restaurant and later took over night shifts in a facility for the mentally ill.
After the first year, many patients can live with a new heart for a long time. Julia Fricke’s transplanted heart is rejected after almost five years. “That was demonstrably the stress,” believes her father. So another new heart? Around three percent of donor hearts worldwide go to patients who need another transplant, according to heart surgeon Jan Gummert. He is medical director of the Heart and Diabetes Center North Rhine-Westphalia (HDZ) in Bad Oeynhausen. Last year, 329 hearts were transplanted in Germany, and the largest center in Germany is the HDZ.
For Julia Fricke, after the rejection of her donor heart, a life-and-death struggle follows: The 27-year-old comes to the intensive care unit of the MHH and is connected to the Ecmo heart-lung support system. Peter Fricke remembers the traumatic time: “We went there on Sunday and the doctor said to us: If we don’t find a heart for Julia by Tuesday, then we can’t keep her anymore. That was the worst thing for us.” The next day, his wife met a doctor in the hallway with the words: “The miracle of Hanover: We found a heart for Julia!” It will be transplanted on the night of her 28th birthday in June 2012.
This heart has been beating in her chest for more than ten years now, part of the scar can be seen in the neckline of her T-shirt. What has changed as a result of the miracle, the second donor heart? Julia Fricke tells how she learned to walk again with difficulty in the first few weeks after the operation, she weighed 100 kilos due to water retention. “When I finally made it down to the MHH and had my first cappuccino, I swore to myself that I would now enjoy every cappuccino in my life,” says the 38-year-old, who now works part-time in her sister’s nail salon.
Julia Fricke is a fighter – just a few months after being released from the clinic, she went hiking in Bavaria with her son and boyfriend and their two sons. According to her own words, she sometimes communicates with the donor of her third heart in the evenings when she is alone. The serious illness made her calm. Unlike her boyfriend, she doesn’t get upset about the teenagers’ untidy rooms, she says. “My goal before the first transplant was to see my son start school. Now he’s 18 and maybe one day I’ll see grandchildren.”