For the first time Reto Weibel realized that his illness threatened his life in the fifth grade. "At that time I was in a summer camp with other victims, and some barely walked because breathing had done so much effort." Reto Weibel has cystic fibrosis (CF). The disease, caused by the defective genome, causes the obstructive lung of the affected person: in the worst case leads to choking.
"This morning I did not know if we could handle this conversation," says Reto Weibel of a garden table at a family home in Steffisburg. "It's one of those days when I have to survive somehow." Weibel says this without the slightest trace of bitterness. She has a lot of pain and feels weak. Blood sugar also varies – Reto Weibel also has diabetes, the consequence of his illness.
"There is still a medical wonder."Reto Weibel
But – and this attitude of Weibel is characterized by a lifetime: "I orient myself to the positive, grateful for what I can still and accept things as they are. Everything else would excuse me. "This was only possible thanks to the support of his environment, especially his wife, two sons and teenagers, and his parents:" They give me a lot of strength and confidence. "back to the sun, the cat Zeus is in front of his feet." There is still a medical wonder. "
Access is not secured
Weibel is eight weeks old when the disease is diagnosed. The doctors told my parents that I would die in childhood. This was normal for CF patients. "Then it was 49 years ago. "I like to call your year," says Weibel and laughs. "That's awesome." In Switzerland, Reto Weibel is one of three percent CFs in his class who are still alive.
His parents, they say, did not panic around the diagnosis. "They just assumed that they could do it, but they were serious about the disease and were very conscientiously doing the therapy." This included, for example, inhalation with the aid of the device, and then the mucus was removed from the lung using special breathing techniques.
Reto Weibel learns he was early disciplined. He is engaged in sports, heals healthy. "I did not want to die," says Weibel. It took him away. The situation seemed to improve: "When I was 20, my dad said," Now you've found a gene that makes you sick. For 10 years, your illness is cureable. "" This assistance comes too late for Reto Weibel.
"The doctors told me this time I could just go home with my new lungs."Reto Weibel
Cure Orkambi, which is directed at the cause of a major disease mutation that affects about 70 percent of CF patients, has been on the market for several years now. But access is not secured. "The federal office of public health can not agree with the price of a pharmaceutical company."
The trade with the producer is delegated to health insurance companies – some pay for their insured, and others do not. As co-chair of the Swiss Society for Cystic Fibrosis (CFCH), Reto Weibel is committed to a solution that will enable all affected people to access the drug.
186 inches, 44 pounds
For Rita Weibel, due to the lack of a medication, there was only one solution: "Sooner or later, I will need lung transplantation, I was soon aware of it," he says. The trained cartoonist and later the elementary school teacher weakens. Since 2010, she will no longer teach, her therapies last for more and more time. At some point, he can go with oxygen just a few steps.
In 2014, he will end up in the hospital again. "The doctors told me this time I could just go home with my new lungs – or not at all." Waiting lasts for 6 weeks, weibel intrudes into the coma, hanging on four machines with the lungs at the same time. "On our wedding day, my wife was informed that I would die in the next few hours." Literally in the last second a rescue organ arrived.
"At that moment I ended my life, I simply did not have the strength."Reto Weibel
Donor lungs function normally, will not clog up. But Weibel is not cured. Six months after the transplant, doctors found the abscess in the chest in the chest: the spleen entered the lungs during surgery. Nobody wants to work with him first: "Absces had already attacked the aorta, the surgeons feared to fall and I die at the operating table."
Then he decides to intervene. Weibel has to undergo seven operations, and the germs are re-emerging at other sites. Overall, he will be operated 15 times under general anesthesia in one year. He is once more in a coma for three weeks and then spent two months in the intensive care unit. "Then I finished my life and did not have strength." Then Weibel's wife Eveline joins – and takes her home, her husband, who only weighs 44 kilos at 186 centimeters.
Enjoy the tidiness
Reto Weibel does not know how to get up again. "I could not eat, swallow, even turn into bed." He has been fighting for every part of self-employment for two years. From the wheelchairs to the walkers, she is preparing for the staff she is riding everyday.
"I managed to learn from this illness to live in this moment."Reto Weibel
"I'm happy when I can stretch my lap or stop one – that's my success today," he says, who was a passionate tennis player. Bol still belongs to Weibel's everyday life. "I changed one illness to another." A drug that relies on a kidney attack. Even after a year the body can bring the donor lungs.
But Weibel can not be discouraged. "Today I no longer suppose I'm going to be dead in five years. Still, I live from day to day. "He does not make great plans. "I just want to be able to share many wonderful experiences with my family." live and enjoy small things. "
Created on: 28.06.2019, 18:10