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Organ transplants in their early 20s: young woman receives new liver and lungs
A lung and liver were transplanted to a young woman in Berlin. According to doctors, double transplantation was the only way to save the patient's life. She suffers from cystic fibrosis, a congenital and incurable metabolic disorder. After 587 days, the young woman was released from the hospital.
Around 8,000 cystic fibrosis patients in Germany
Cystic fibrosis is a congenital metabolic disorder. In Germany alone, around 8,000 people suffer from the incurable disease, which makes body secretions viscous. Sarah Schönhoff from Mirow (Mecklenburg-Vorpommern) is one of them. The young woman had a new lung and liver transplant due to the disease at the German Heart Center Berlin (DHZB). However, this does not cure her.
Average life expectancy of 40 years
Characteristic of the hereditary disease is a limited functionality of the mucus-forming glands in the body, whereby a very tough mucus is formed, which affects in particular the lung function, but also the digestive organs. The lungs stick together and are extremely susceptible to infections, breathing becomes more and more difficult.
The severity of the disease can vary enormously. Because the earlier the disease is recognized, the better the treatment options, experts have been saying for years that cystic fibrosis screening for babies is necessary.
In the meantime, an examination for cystic fibrosis can also be carried out in Germany with the so-called newborn screening. Children with cystic fibrosis can often be treated well.
Life expectancy is continuously increasing thanks to advanced therapies and an increasingly earlier diagnosis. Currently, the average life expectancy of cystic fibrosis patients is around 40 years. But not everyone reaches this age.
Retired at the age of 20
Sarah Schönhoff from Mirow in Mecklenburg, shortly before her fourth birthday, found that she was suffering from cystic fibrosis, reports the German Heart Center Berlin (DHZB) in a message. She had been treated repeatedly for severe bronchitis before.
The girl had to learn to live with the disease. She said, "Daily inhalations, breathing training, that was just part of normal life for me."
Although she has to go to the hospital again and again, she effortlessly reaches middle school and trains as an administrative assistant at the federal police, is taken on and works in Potsdam from 2010.
Everything goes well for a year, but then the disease becomes more and more noticeable, which is why it reduces her working hours. After a serious fungal infection, she is permanently on sick leave, in August 2013 she finally retires - in her early 20s.
A question of days
"As a cystic fibrosis patient, you know that it can come to this at some point," said the patient, "but it was bitter that it happened to me so early. Because I really enjoyed the job ”.
Sarah Schönhoff moves back to her hometown, where she is doing comparatively well for about a year and a half, until she is admitted to the Charité hospital in Berlin in March 2015 because of the flu, where she has been treated for years.
Because cystic fibrosis has irreparably damaged not only the lungs but also the liver, she is on the waiting list for a double transplant.
At the beginning of December, the patient's condition deteriorated dramatically. It must be connected to a machine that replaces the respiratory function of the lungs. "It will be a matter of days whether Sarah Schönhoff can still be saved by a transplant," the message says.
New lungs and liver inserted
In mid-December there is news that there are suitable organs. "My greatest wish was that I be transplanted before Christmas," said Schönhoff, "and maybe someone heard it after all."
It is brought to the German Heart Center Berlin (DHZB), where hearts and lungs can be transplanted. A combined lung and liver transplant has been performed only 14 times nationwide in the past ten years.
Doctors are aware that the operation is particularly risky given Sarah's condition. But it is the only chance for the patient.
On December 16, she was given a new liver and lung operation in a 19-hour operation. The patient is not yet saved: "For the patient, the work of the team in the intensive care unit depends just as much on the success of the procedure itself. We knew that the first days and weeks could be critical," said DHZB surgeon Christoph Knosalla .
Organ donation saved young woman's life
Together with doctors, nurses, physiotherapists and psychologists, Sarah Schönhoff is now on the arduous journey back to life. Because she was barely able to breathe before the transplant, her breathing muscles have receded as much as the muscles of her legs. And she has to learn to trust the new lungs.
There are always serious complications. "But I never thought of giving up," said the young woman, "neither before nor after the transplant."
However, she often thinks of the unknown donor of her lungs and liver. "I don't know if it was a man or a woman, I don't know where and how this person lived. But I know that he donated his organs to me and saved my life. "
"A transplant was the only chance to save it," said Knosalla, according to a news agency dpa. A new lung alone would have been of no use. Cystic fibrosis also attacks other organs: "There is imminent acute liver failure, you cannot survive."
Sarah Schönhoff was discharged from the hospital after 587 days. She knows that the transplant did not cure her of her congenital illness. She is also aware that there can always be setbacks. But she doesn't want to think about that now. But just enjoy their new life. (ad)