The grace of charity

Take Katharina, aged 36, for instance. When the doctors realised that her heart was malfunctioning, she had not noticed herself. A little later, aged 29 then, she found out what it was like to be so tired that it was hard to leave the bed in the morning. For four years, she had to wait for a donor heart.

Or Sina Jürgensen, 37. She is still waiting – and hoping – for a new kidney. She has been waiting for eight years so far. With that, she is still below the average waiting time for a donor kidney. But by now, her body is so weakened that a kidney transplant is getting less and less likely.

Katharina and Sina are two of the five people telling their story here. They represent thousands of others in a similar situation. But nobody would expect you to say yes to a potential organ donation. What they wish and hope for: Think about it, talk to your families, take a decision. And ideally: record that decision in an organ donor card, an advance directive, or – from 2022 onwards – in the new organ donor registry.

That would also please German lawmakers who in 2019 decided against an opt-out system, meaning that everybody would be a potential donor unless he or she had actively opted out. Instead, policy makers want to encourage people to think harder about an organ donor card.

So, everybody should ask him- or herself if he or she would be ready to make that gift to a stranger. Or, if you had the option: Would you accept it?

Katharina S., 36, has been living with a donor heart for six years: ‘You don’t wait for the death of someone else.’

‘When I first noticed that something was not right, I was swimming in the sea. My heart was stuttering, and when I went to a check-up, my heart’s blood pumping performance was very low. Analysing a tissue sample gave us the reason: Parts of the heart muscle had been replaced by connective tissue as a consequence of sarcoidosis, an autoimmune disease with unknown cause.

Until then, I had been used to be in control of my life, to be healthy and productive. I was just 26 years of age. And suddenly, my health ran out of rudder! I got a defibrillator vest to resuscitate me in case of serious cardiac arrythmia. But then, my results got so bad that I needed an implanted defibrillator. It saved me once when I was with my horse and a fellow equestrian immediately called an ambulance. And another time in my staircase.

It became obvious rather soon that I needed a new heart. You don’t wait for the death of someone else. But of course, you do know that something terrible has to happen. When I agreed to a new heart, my physician advised me not to spend my time waiting. Which I did not do, I lived in the here and now. Those four years were the most conscious time of my life, because I could also see the finality of life. Sometimes I went to sleep at night without knowing if I’d waked up in the morning.

In those days, I was not allowed to be more than 200 kilometres away from the transplantation centre in Bad Nauheim. When my phone finally rang, it was 3 a.m. The heart, I was told, was still inside the donor. So, I knew that a family somewhere else was probably going through their darkest hour. Afterwards, I wrote an anonymous thank-you letter, even though it was impossible to put into words what the donor and her family had done.’

Ardijan Ujupaj, 42, needed two donor livers: ‘I was repeatedly ready to chuck it all in.’

‘It all began when I was 26. I was always tired, had no appetite. When I looked into the mirror, my skin and eyes were yellow. My general practitioner assumed an inflammation of the liver and said it would be over soon. But things got worse. In hospital, they found out I had an autoimmune disease. My immune system fought against my own liver. The organ was affected more and more. At some stage, we began to talk about a transplantation. About two years later, I got a new liver. Surgery went well, and I could soon be released from hospital. I felt like newly born. But things did not stay that way.

During a routine check-up, it was noticed that there was a blood clot in the vessel supplying my liver. The doctors tried to get rid of it but failed. They said that the liver would be destroyed. And that I would need another new one. I could not believe my bad luck. At the time, my wife was pregnant for the second time, and for me, it all started again. My body got weaker. But paradoxically, the blood levels that determined my place on the waiting list were too good. I didn’t have enough points to be up high. I was repeatedly ready to chuck it all in.

After seven long and difficult years, I got the call: There was a suitable liver for me. My chances weren’t got, as I was in a pretty bad state already. My surgeon said that if he could foresee that I would not survive, he would not transplant the organ and just suture the incision. But I had no other option. I would have died anyway. Before the surgery, I said good-bye to my wife and children.

When I woke up, there was only one question in my head: Had I gotten the new liver, or not? I could not speak; I could not move. Then my wife came to me and whispered into my ear: “You made it.” Four weeks after surgery, I was allowed to see my children for the first time. My daughter said: “Daddy, you’ve got white eyes.” And I cried.

All of that was four years ago. I am infinitely thankful to those saving my life. Two years ago, I became a father for the third time. I had never thought I would live to see such happiness.’

Sina Jürgensen, 37, has been waiting for a kidney for eight years: ‘For eight years, I’ve been sitting on the substitutes’ bench.’

‘When I agreed to this article, I did not know yet that I would soon after be kicked off the transplantation waiting list. I am totally destroyed and have very little lust for life. Nevertheless – or maybe because of it – I want to tell my story, because it represents so many people, and also a certain cynicism: In order to have a chance for a new kidney, you have to be really bad. But your condition cannot be too bad either, or you are out.

I was 29 years of age when I went to hospital feeling totally limp and tired. Initially, the doctors thought it was the flu. But when they saw how bad my blood levels were, they conducted further examinations. My lungs were filled with water, and my liver was not functioning anymore. The reason: my kidneys. Probably a genetic defect. I stayed in intensive care for three months, and then another while in a normal ward. When I was finally released, my kidneys were still not functioning, but the doctors said they might start working again.

But they didn’t. So, I have to get rid of all liquids I take in through food and drink by blood purification. Mondays, Wednesdays, and Fridays, I go to my dialysis, which is extremely exhausting. What my body would normally do in 48 hours, the machines do in five. But dialysis is getting less and less efficient: Nowadays, only 2,6 litres get extracted from my body. In comparison: If I eat some cucumber, I’ll easily absorb 100 millilitres of liquid.

But not only liquids are the problem, but also the various food ingredients. Nowadays, I almost exclusively eat white bread, cream cheese, rice and pasta without sauce.

29 is a good age. You have so many plans, you are ready to hit the ground running. But for eight years, I’ve been sitting on the substitutes’ bench. Last year, my boyfriend broke up with me, after five years. He is a very nice guy, and we still get on very well. But it was simply too difficult. We totally lacked a perspective, and he wanted a normal life. I can understand him.

By now, I have found out that there is a problem with my parathyroid. As time goes by, more and more parts of my body go bust. Surgery might help, however. Then I might be able to get back onto the waiting list.’

Diana Dietrich, 36, mother of Daniel, 3, who needed a donor heart: ‘The child that saved him is omnipresent for us.’

‘Daniel was born a little early, on 19 December 2017. His first Christmas, we therefore spent in hospital – and all the following ones. Not that we sensed that at his birth. This year [2021], it will be the first Christmas for us at home.

He was a happy child, growing well. However, he soon began to cough – bronchitis, said the doctor. At some later stage, we made him inhale kitchen salt and cortisone every hour, to no avail. The shock came one morning: Daniel was chalk-white and did not react when we offered him his bottle. In hospital, the doctors diagnosed a serious cardiac disease. They said he needed a new heart. He was barely ten months old.

In the beginning, we hoped medication would stabilise him enough to wait at home. But he just lay there, coughing, hardly able to breathe, and vomiting a lot. The doctors connected him to heart support system in an emergency surgery, a machine on wheels weighing a hundred kilograms.

The tubes that provided him with blood were two metres long. He learned walking while being connected to them. The batteries lasted for twenty minutes. I always had to be at his side to make sure he would not pull out a tube. Twice a day, we could walk along the corridor, and once a week in the hospital garden for ten minutes. That time has traumatised him. The narrowness, the treatment with all the syringes and incisions, the pain. Even today, he does not speak.

In total, we waited for 976 days, most of his life so far. During our wait, six other children in the ward got a new heart; many of them had waited for a shorter period than we had. But such a heart must be suitable. We were delighted for the other kids and their families, although it became more difficult with time. And of course, we knew that behind every heart, there was a child that did not survive. But then, they don’t die because they need a heart.

When we got the longed-for news in July 2021, we were afraid. Surgery took twelve hours, but Daniel recovered fast. Nevertheless, we have to be careful – his immune system is still weak. We hope to show him soon how much bigger the world is, compared to the one he has known so far.

My husband and I have never asked ourselves what we would do if our child could become an organ donor. Today, I think that all parents should do that. The child that saved Daniel is omnipresent for us.’

Philipp Leonhard, 37, agreed – with his sister – to have his mother’s organs donated: ‘It touched me how unfamiliar she looked.’

‘A dead person does not need his or her organs anymore. But they help somebody else to survive. This basic thought guided me to my decision to agree to my mother’s organs to be donated. I took that decision with my sister, and I was glad I did not have to do that on my own. We think we acted according to her beliefs. She never actively agreed to an organ donation, but she also never spoke out against it.

Our mother suffered cerebral haemorrhages in August 2020. She was instantly taken to hospital and underwent an emergency operation. Four days later, she was declared dead. Her brain waves had ceased.

Everybody in hospital gave us the time we needed. And the representative from the German Trust for Organ Transplantation was there whenever we needed him – no matter what time. He showed us a lot of empathy, and he explained in detail how an organ donation works. His explanations helped us a lot. It is quite difficult to understand how a human being can be dead, and yet still be breathing and with a heartbeat, thanks to machines.

My sister and I saw our mother one last time after the organs had been taken out. I wanted to take the opportunity to see her for a final time. And we could persuade ourselves that the procedure had left no visible impact. It touched me how unfamiliar she looked.

“Now she is gone.” That’s what I thought when we visited her in her intensive care bed two days before her official death. My sister felt the same. I cannot remember anymore which one of us first said so.

I am still in contact with the German Trust for Organ Transplantation. Recently, I received a book with anonymous thank-you letters from organ recipients. I would find it exciting to get to know the people who received our mother’s organs. But I can well understand why the lawmakers have decided that everything has to stay anonymous.

A young person got her lung, and he is well. The recipients of the liver and the kidneys are well. It is a strange thought that my mother’s organs have enabled three people to live on. But somehow, it’s nice. It has helped me to get through the difficult last few months.’