Seriously ill 22-year-old cystic fibrosis patient can be deleted from the organ donation list

Seriously ill 22-year-old cystic fibrosis patient can be deleted from the organ donation list


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Young cystic fibrosis patient refuses life-saving organ donation
A 22-year-old woman suffering from an incurable disease rejects an organ transplant that could prolong her life. The British woman, suffering from cystic fibrosis, has been removed from the waiting list for donor organs because she still has big plans. Doctors think she has about a year to live.

Life expectancy increases thanks to advanced therapies
Cystic fibrosis is a congenital metabolic disorder. In Germany alone, around 8,000 people suffer from the incurable disease, especially children and young adults. Characteristic of the hereditary disease is a limited functionality of the mucus-forming glands in the body, which creates a very tough mucus, which affects in particular the lung function, but also the digestive organs and thus leads to complaints such as shortness of breath, respiratory infections, diarrhea and fatty stool. The course of the disease is very different and can affect different organs. The severity of the disease can also vary enormously. Since the treatment options are better the sooner the disease is recognized, experts here in Germany also believe that cystic fibrosis screening is necessary for babies. 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 will reach this age.

Patient decides against transplantation and for life
22-year-old Channan Petrides from Stanford near London is also unlikely to grow old. The young British woman suffers from cystic fibrosis and doctors told her that she only had one year to live - or that she was undergoing an organ transplant that would slow the course of the disease. The young patient decided against a transplant, but still for life. "I know I'm taking a big risk, but I would rather enjoy the time that I have left than waiting for the call that may never come," Petrides told British Mirror. For the rest of her time, she created a bucket list, a wish list of things that she still wanted to do or achieve in her life. It says, among other things, a Disneyland visit or her birthday party. She was already able to tick one of the many wishes. For example, she saw a game by the London football team West Ham United and “went viral”. Her ultimate wish - to walk the red carpet at the Brit Awards - has not yet been fulfilled.

The patient could also die during the transplant
"Nobody could say for sure that the transplant would work and I couldn't do anything about my bucket list because the risk of infection would be too great," she explained her decision against the operation and for her plans. She could die herself during the operation, but her new organs could also fail after a few months. "If it had brought me another 20 years, I would have done it of course." About her illness she said: "Cystic fibrosis feels like having a plastic bag over your head and could only breathe through a straw." Even if - how reported earlier - Ms. Petrides' state of health has deteriorated enormously since she was 19 years old, on average 40 years old today. Before that, she had a normal childhood and youth, loved sports, was the captain of a soccer team and went to festivals with friends.

Better education about the rare disease
In the beginning, her environment struggled with her decision, and some even refused to speak to her. They are now supporting them. Even strangers donate money as part of a crowdfunding campaign so that they can make their last wishes possible. If there was any money left, it could go to a cystic fibrosis foundation, as she wished for on her bucket list. She also wants better education: “People can't believe how sick I am because I don't look that way,” says Petrides, “but the truth is that I sleep 20 hours a day and I can't get up the stairs . My lungs tear, so I cough up blood and I've been on morphine since November because my chest hurts chronically. We really need a better understanding of cystic fibrosis and how to treat it. ”In the past year, a legal process related to the disease caused a sensation in Germany. A young boy suffering from cystic fibrosis had not received medication and medical help for years, but was encouraged to meditate by his parents. The legal guardians were apparently followers of a crude religious group. In the process of the so-called "Lonnerstadt sect guru", the verdict was finally passed: three years in prison for the sect guru and also a prison for the mother. (ad)

Author and source information


Video: Josh - From Cystic Fibrosis to a Double-Organ Transplant


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