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They never thought they would ever need an organ. And yet. Evelyne and Yuri owe their lives to someone else's donation. Guy received one of the greatest tokens of love from his wife Martine: her kidney. They tell us their story.
The ultimate gift
Organ donation campaigns are not always tangible. Some people talk about it, others carry the so-called "passeport de vie" with them to make their opinion known in case of a stroke of fate. But talking about death is often still taboo. Yet organ donation is a question of life. Life that is saved by the deceased giving permission to doctors during his or her lifetime to remove one or more organs from him or her after death. In 2020, 13 people in Luxembourg benefited from this. A gesture of solidarity that also enabled Evelyne, Guy and Yuri to resume their lives.
Yuri Auffinger comes to the interview on his scooter. You can't tell by looking at him that the 43-year-old received a liver transplant in 2013. Victim of an autoimmune disease that attacked his liver, Yuri's condition gradually deteriorated. He had ten years of peace before the disease took over and his liver turned into cirrhosis. "I spent the last three months bedridden in hospital. I had to go to the emergency room every week where they took litres of water from me. I took many medicines and had to endure their side effects. My health deteriorated visibly", he says.
It was only after two false alarms that Yuri learned that he had a liver waiting for him: "The first time was when the doctor called me back on my way to the hospital to tell me that the liver wasn't good after all. The second time was during a doctor's appointment. He was on the phone and I realised that this time it was not going to for me." The third call was the right one for Yuri, who had just left the emergency room again. He rushed back to the hospital and got ready for the surgery. And it was a success. Yuri received a complete liver – the only organ that can regenerate: "There is a possibility to transplant two thirds or the whole liver, in my case it was the whole one. I received it from a 73-year-old who died in hospital on the same day. I was a little embarrassed that my liver was so 'old', but the doctors assured me that the age of the donor was not important for the liver."
Back to normal life
After the operation, Yuri had to learn to walk again. Rehabilitation was not easy, but today the family man, who is very emotional when he talks about his little boy, leads a normal life. This is despite medication that he has to take for the rest of his life: "People often ask me if I can eat whatever I want or if I can drink anything, the answer is yes. As a precaution, and because I have no interest in it, I don't drink alcohol, but the doctors don't forbid me to have a drink now and then. Actually, I only have to avoid citrus fruits, especially grapefruit, because they contain an enzyme that alters the effect of the medication. But that's all. Apart from that, I live a healthy life." However, the operation has left its mark: "On the whole, I'm fine, but I don't have the same performance potential as before the operation. It was a lot of work to get back into a certain shape and I still feel like I aged ten years overnight."
"Without my wife's living donation, I wouldn't be here today."
Guy Cognioul, transplant recipient
It is on a rainy summer day that Guy and Martine Cognioul welcome us to the garden of their home in Grevenmacher. Since the beginning of the pandemic, the couple has avoided contact as much as possible. When close friends or family nevertheless come to visit, the weather has to cooperate so they can sit outside. Guy is a vulnerable person because of the kidney transplant he received over ten years ago. To prevent his body from rejecting the organ, he has to take so-called immunosuppressant drugs every day. These suppress the body's own defences, which means that the 57-year-old is more susceptible to infectious diseases. This also means that the vaccination did not work properly for him. His antibodies against the coronavirus have not increased sufficiently even after the second dose. He is now pinning his hopes on the third dose, which he was already allowed to receive due to his transplant. "Whether my antibodies have risen since then, I can't say, I haven't done another analysis yet." In any case, after the third injection, Guy experienced significant side effects for the first time. "It's worth it to me personally, should vaccination as a means to an end actually prevent ending up in intensive care", he says.
It was at a blood donation appointment in 2009 that Guy Cognioul was alerted to the fact that his creatinine levels were worrying. They indicated that a person's kidneys were no longer working properly. It was surprising news, but not unexpected. The reason for Guy's kidney condition is in fact a hereditary disease called polycystic kidney disease, due to which his father was already in need of organ donation. "When his father had the kidney transplant, we had just met", Martine recalls. "At the time, I was looking up what this disease was all about in an old Larousse Médical in the office." She remembers talking to her boss about the fact that – should it come to that – she would donate a kidney to her Guy. "I knew that."
Martine and Guy Cognioul
Many years later, when the time came, Martine had some doubts. The couple had to see different doctors and psychologists separately to make sure Martine made the decision independently. "The doctor who treated me at the time was really brutal", she recalls, "he prepared me for all eventualities and I was actually in a bit of a dilemma." It is her family doctor who in turn encouraged her to take the step, which she does not regret to this day. She has no restrictions as a result of the donation. And Guy knows for sure: "Without my wife's living donation, I wouldn't be here today." Due to a heart problem, dialysis might not have been a long-term solution for him. Months before the surgery, he was already "in the nirvana", as he describes it. Severe brain fog made him sleep at least 20 hours a day. His body was poisoned.
To give an organ
As a rule, only family members or married partners are allowed to donate an organ to each other. The persons concerned must undergo separate psychological examinations at the transplant centre abroad. Jorge De Sousa doubts whether someone would be allowed to donate a kidney to their best friend. "In any case, they would have to undergo the same tests as spouses", he says. What could speak against it is the danger of "owing someone something", so money could again play a role. However, this decision is made at the transplant centre. Anonymous living donations such as a kidney or part of a liver are currently not possible in Luxembourg.
Jorge De Sousa has never come into direct contact with a person in Luxembourg who has obtained an organ through the black market. "However, it is no secret that this exists", says the experienced coordinator of Luxembourg Transplant. Still, he thinks people in Luxembourg are enlightened enough not to take the risks involved. However, De Sousa regularly receives calls from England, India or Turkey in which people offer him their kidney.
At the time, Martine went in search of like-minded people to share experiences. When she didn't find anyone right away, she decided to write an email to Frank-Walter Steinmeier, the german SPD parliamentary group leader at the time. "He had also donated a kidney to his wife at the time. It was all over the media." Sure enough, she got a reply from Steinmeier's private secretary describing the politician's experience. After Guy and Martine's surgery, she even inquired about their well-being again. Apart from the pain, which both remember as extreme, everything is actually going exceptionally well. "His creatinine levels dropped immediately after the transplant, so my kidney worked great", Martine says and is still happy today.
"When I hung up, I started jumping all over the place. I said to my husband 'they have a kidney for me, they have a kidney for me!', I will never forget that moment."
Evelyne Hornemann-Biagionni, transplant recipient
Evelyne Hornemann-Biagionni is smartly dressed for her (almost) 70th birthday: The dance enthusiast happily shows off her gala photos, neatly made up and dressed. She is full of energy today and knows what she has to thank for her zest for life. She has been living with someone else's kidney for 18 years. She is used to medication, lots of medication, but she has no problem taking it: "It's very hard, you have to take a series of pills at fixed times. For that, I set my alarm clock and am careful not to forget them. It means a lot of extra organisation, especially when I go travelling, but for me it's very important to take care of this kidney. I was lucky enough to get one, so I do everything I can to keep it healthy", she says.
In the 1990s, Evelyne suffered from a series of repeated infections. Her health problems were due to a hereditary disease that her mother, grandmother and brother already suffered from. The disease attacks the kidneys, Evelyne's health deteriorated so much that she had to give up her job. That was in 1999. A fistula was placed in her arm to prepare her for the upcoming dialysis. Evelyne's life changed drastically: she was hooked up to a machine for dialysis three half days a week. Her life now depends on it. From then on, she was put on the waiting list for a kidney transplant.
A waiting time that, according to Jorge De Sousa, averages between three and five years in Luxembourg. De Sousa has been in charge of the Service de Coordination de Transplantation at Luxembourg Transplant for over 21 years. He explains to the Lëtzebuerger Journal how the waiting lists work. According to him, it is the treating specialist who decides whether a patient is on a list or not. "There is a whole range of criteria, among other things you have to be really ill. The patient's age or how long he/she has been living with dialysis also play a role. First, however, they try to delay a transplant as long as possible with medication. Because: "Getting an organ does not mean being cured." Transplanted patients run the risk of possible complications, they have to deal with the eventuality of dying on the operating table and have the certainty of having to take immunosuppressants for the rest of their lives. "That's why I try to allow the patient to live with their own organ for as long as possible. A transplant is only an option when there is no other way."
Jorge De Sousa, Luxembourg Transplant
Then the patient is put on the waiting list. This means that he or she is added to the Eurotransplant's international database. "From the moment the patient is put on the list, he gets points", explains Jorge De Sousa. The more points a patient has, the higher he/she moves up the list. No one can lose points. "At most, you are overtaken by others, they get more points because of a very critical condition. But: "No matter if someone is better or you 'pause' to go on holiday, you get points every day." Jorge De Sousa already believes the pandemic will have an impact on the waiting list – but not immediately. "Because of Covid, people are waiting longer to go to the doctor. The more the situation stabilises, the more people will get on the waiting list in one fell swoop", he fears. At the moment, however, the effects are not yet reflected in the figures.
Eurotransplant was founded in 1969 in the Netherlands. At that time, only three countries belonged to Eurotransplant, including Luxembourg. Now there are eight (the Benelux countries, Germany, Austria, Slovenia, Croatia and Hungary). "The more countries that work together, the greater the chance of finding a matching donor", says Jorge De Sousa.
According to Luxembourg Transplant's most recent activity report, 13 organs originating from Luxembourg were successfully transplanted within the Eurotransplant network in 2020. This means that Luxembourg has around 4.8 donations per million inhabitants, which is far below the Eurotransplant average of 13.2 donations per million inhabitants.
In 2020, eleven donors were eligible in Luxembourg, seven of whom were excluded for medical reasons and four because they had expressed their opposition to organ donation before their death.
In 2020, 81 people were enrolled on one of the waiting lists (78 in 2018, 65 in 2019). 13 people from Luxembourg had an organ transplanted abroad (34 in 2018, 19 in 2019).
Evelyne was waiting for 17 months until she received a new kidney. The waiting time is relatively "short", she says, and compared to others she considers herself lucky. During these 17 months, Evelyne was constantly accompanied by a beeper, because the call with the news of an available kidney can come at any time. During this time, Evelyne lived as well as she could, despite the restrictions: "I was only allowed to drink as little as possible, so as not to overtax the little functioning capacity of my kidneys that I had left. I had to avoid eating fruit that contained a lot of water and my daily routine had to be adapted to dialysis. The first summer I went on holiday with my husband. We had to find a place to do dialysis on the spot, apply for it beforehand, etc. It is very difficult. It is very inconvenient. And finally, dialysis was so tiring that I couldn't enjoy my stay."
In the second summer, Evelyne told her husband that she will forego a holiday this year. And it is the right decision. On July 17, 2003 at 1.30 a.m. the beeper rings. Evelyne jumps to the phone, a kidney is apparently ready for her. However, she still had to have some tests done before the donation could be confirmed. "There are six compatibility factors in total and at least four are required for a transplant", she explains. As luck would have it, the kidney was perfectly compatible with Evelyne. A few hours later, the time has come. Evelyne is quickly at the hospital and ready for several hours of surgery: "When I hung up, I started jumping all over the place. I said to my husband 'they have a kidney for me, they have a kidney for me!', I will never forget that moment."
Luxembourg and the foreign countries
In Evelyne's case, the kidney transplant was still carried out in Luxembourg. Since 2010, however, organ transplants have no longer been performed in this country. This is simply because the surgeon who performed them back then "like a picture book", as Jorge De Sousa says, has retired. "Transplants were his passion. He never took a holiday and was always available", says De Sousa. Since then, patients residing in the Grand Duchy have been referred to transplant centres in neighbouring countries. The coordinator thinks it is good that nothing was forced after his departure. "In my opinion, the fact that Luxembourg patients are transplanted abroad can only be beneficial", he says. Because to be really good in the field, you would need a critical mass of operations. However, this is not achieved in Luxembourg with five transplants a year. "Abroad, the patients are well taken care of. Doctors there perform transplants almost every day."
De Sousa does not see the dependency on other countries as a problem; after all, the cooperation between university clinics and Luxembourg hospitals is very good. Although patients sometimes have to travel back and forth a lot, there are also Luxembourg doctors who take care of the follow-up examinations in order to minimise unnecessary journeys abroad. When an organ is available, the transport to the university hospital must be organised as quickly as possible. De Sousa has been working on optimising this process since 2010. "If the phone were to ring now, the patient would be in an ambulance within 25 minutes and at the hospital within two hours. Just recently I had a patient who was in Brussels by helicopter within an hour", he says.
The operation takes seven hours and is a success. Later, Evelyne learns that she was the first compatible person on a list of 14,000 people waiting for a kidney that year. The time after the operation was tough, but Evelyne persevered: "It took five weeks to recover and especially to learn to drink again! I was no longer used to drinking, especially in normal quantities. The same goes for going to the toilet, I was no longer used to urinating regularly." Everyday things that seem natural to everyone, but no longer to Evelyne. Even though she will never forget the phone call on July 17, she thinks about her donor every day: "I don't know much, only that it was a teenager who suffered brain death. I know this because the kidney had not grown to adult size but was still growing inside me. I am so grateful that his parents made the decision to save other lives thanks to him. This also happened to my uncle who had a stroke. His death saved five people." Today, Evelyne is an activist with Protransplant to share her story, raise awareness about organ donation and encourage families to think about it, also because "it's a topic we don't talk about unless we are directly affected."
"Organ donation should be included in the school curriculum as part of a subject."
Jorge De Sousa, Luxembourg Transplant
Jorge De Sousa's greatest wish and at the same time the greatest challenge is that people talk about it more. He sees the most potential in young people. "Organ donation should be included in the school curriculum as part of a subject." Because only when people are increasingly confronted with the topic and sensitised to what it means to have the chance to live on with an organ, will they explicitly speak out in favour of organ donation.
Become a donor: yes or no?
In Luxembourg, every person who does not explicitly object is a potential organ donor. "We don't ask permission from the family of a deceased person who is a potential donor, we seek opposition", clarifies Jorge De Sousa. Luxembourg Transplantation first tries to find out whether the deceased person has an organ donor card. "That is not so easy", says De Sousa, who has high hopes for the "dossier de soin partagé" in this regard. In future, it will be noted there if a person does not want to donate its organs. Currently, everyone can download the app "Passeport de vie" to indicate whether they are available as an organ donor or not. If Luxembourg Transplant does not find a clue as to how the person stood, the search begins. "We try to find out how this person thought about it, whether he or she liked to help, was involved, etc." If the family says that the deceased does not want to donate his/her organs, Luxembourg Transplant cannot verify this and therefore has to accept it. Jorge De Sousa calls this a "refus". There is also the so-called "refus médical", which means that a person cannot be a donor because of an illness. "Ten years ago there were far more refus than refus médicaux", he says. Today it's the other way around. This shows that people are now much more open to organ donation.
Guy Cognioul will also be dependent on the solidarity of others in the future. His kidney transplant was not without bad news: the doctors found out that Guy not only suffers from polycystic kidney disease, but also from polycystic liver disease. Since then, his liver values have been monitored and a liver transplant has to be considered. Guy does not know the exact state of his health at the moment. "My last visit to the doctor was in March 2020", he says. A consequence of the pandemic. He suspects that his liver values have risen since then. "I feel that the liver has grown so much that it presses on other organs. At times I can't breathe well or I feel sick", he reports. "We fought tooth and nail to resist a liver transplant, but I think we have to come to terms with it", Martine says. For her, it means "an absolute trauma". Because the liver is the only organ that regenerates, a living donation would theoretically be possible. But Martine does not want to take that risk again. She admires her husband, for his will to live: "He has a very strong character." Therefore, neither Martine nor Guy doubt that the generosity of a stranger will give him another chance at life – he will certainly not squander it.