Organ donation: A new chance at life - our way through an organ transplant as a field report

It is January 6, 2022.

Organ donation: A new chance at life - our way through an organ transplant as a field report

It is January 6, 2022. I received a message from the hospital. I'm in tears and not out of sadness or shock. Tears of joy fall down my cheeks. "Dad is actively on the transplant list," reads the message, which my aunt will later title "Message of the Year." It's the first day of sunshine in the new year. How appropriate I think.

The prognosis in the second part of the message from the hospital takes my breath away: He should be transplanted by Easter. At least that's what his doctor thinks. Such a big weight falls from my heart, the rumble must have been heard by the neighbors below me.

I'm standing in the sunshine and typing my answer, my eyes still fogged with tears of joy. For more than three months now we have feared for my father's life. We always knew that at any time he might need a new liver. It self-destructs: autoimmune disease. But when this "new liver" has to come into our lives has always been uncertain. It could have been tomorrow, in three weeks, or in five years. No one could say for sure. Never.

In October, the shocking call came that the situation was serious. He had to go to the hospital immediately. Otherwise he wouldn't survive the weekend. My mother knew that people usually have a year left with Papa's prognosis. 12 months to get a new liver. 365 days that could be my father's last. After the first call, many more conversations and investigations followed.

Only if he was otherwise healthy and his life was not endangered by something else - like cancer - would he be put on the transplant list. These examinations and surgeries lasted three months. Operations designed to provide more information about his health or ensure his survival. You got on my family's nerves and unsettled us. How quickly would such an illness tear my dad out of our lives? Will 365 days be enough for the new liver to come? Nobody could tell us that.

The darkness of uncertainty and fear called for many tears - and much sleep. Nevertheless, today you can hear a hopeful exhalation and whole mountain ranges of stones fall from the hearts of our family. Yes, the path is far from over. But there is a prognosis. A prognosis that says: 365 days are enough. Even if it's just a prediction, a probability - it's like a light at the end of the tunnel. The first glimmer of light there's been in this darkness for weeks. A ray of light that will hopefully get brighter and brighter.

It is now mid-February. There are still about 60 days until Easter. A lot happened and nothing happened at the same time. An expert on the hospital's organ donation hotline said that with current figures, organ donation would not be within reach for another year. A cloud slipped in front of our beam of light so quickly and obscured the view again.

After this information it was time to wait. A few weeks later, the next appointment at the hospital. And my father was finally honest with the doctor. He wasn't feeling well. He was losing strength. He had lost his weight weeks ago - he looked skinny and emaciated.

The doctor took his concerns seriously. An exclamation mark should be included on the hospital's internal organ donation list. An exclamation mark that increased the urgency again. And yet the conclusion of the medical staff was: Other people with the same blood values ​​as dads would be much worse. Does this increase or decrease the chances of a liver? We do not know it. New tests and an operation were put on the to-do list.

It's now Easter. Still no call, although the professor said he would be transplanted by Easter. So far this year we have had fewer donor organs than ever before. 29 percent less. But Easter is not only overshadowed by disappointment: Corona is wafting through the air in the house. But, miraculously, no infections take place within our family. Quarantine and isolation saves us here.

All in all, life seems like a roller coaster ride. Sometimes it's up the mountain. At the top we are happy and everything seems within reach. And then it goes down again. At such a moment nothing seems to work. It seems like things will never go up again. Such a feeling flows through us at Easter, when we face reality and have to realize that the prognosis of the professor from the hospital was wrong.

And then at the end of April comes the day that could be Papa's last birthday. Nobody says it but me. It's easier not to think about it. And yet we try to make the most of the day.

Dad is not well. He has very little strength and is in real pain. And yet we put a smile on his face. From the Hamburger Miniature Wonderland he got a miniature family - we in 1 centimeter size. Plus a voucher for an evening event in Wonderland. Because we know how he loves it.

Two weeks later we walk through the wonderland with up to 196 other people, taking our time to look at everything and enjoying dad's looks. And yet: We're going earlier. Dad doesn't have the strength to walk and stand any longer. It was nice nonetheless. A real success as far as we can.

It's the end of June. Yesterday was our family-internal mini-border for the all-important call: my little sister's oral Abitur exam. We wanted her to be able to fully concentrate on it and we secretly wished that the call would come after and not just before.

The plan worked. She brought home 15 points. Just a few hours later – shortly after 1 a.m. – the phone rang. My father left the bedroom while he was asleep. My mother followed. "Is it starting?" - "I think so."

Only the announcement comes at night. You've got a liver, but a few final tests are still missing. They call again at 8 in the morning. It's the shortest night in a long time. Neither of us can sleep. The heart beats fast, the stomach rumbles with excitement, legs and hands tremble. The excitement is palpable in the air. The whole skin tingles. And quietly fear creeps into consciousness.

It's the call we've been waiting for since Christmas. The call that gives my father the last chance at life. It is the call of pure hope. And at the same time, it is the call that triggers fear and panic. Fear of an operation lasting more than six hours, fear of fainting and the consequences of the transplant.

It is the last hug with my father, which lingers on throughout the day and evening. The warm feel of his skin. The bony spine. How we squeeze even harder at the same time because we think exactly the same thing. It's a feeling that I want to hold on and not let go. Mainly because I don't know when I'll feel it next. It's a stab in the heart. A mountain that weighs on the heart. Again we wait for a call. A call that will tell us if dad can make it. Can we go on living together?

Dad is sitting at the dining table. The smell of fries is in the air. He hasn't eaten anything all day. You can clearly see how skinny he is. As if drawn from this serious illness and this sobering time.

Happiness looks different. In addition to the smell of French fries, there is something else in the air. It's heavy and overwhelming. Like thick black smoke billowing through the room. We're all pretty quiet. "At least we now know that dad is also at the top of the list at Eurotransplant," says mom finally. It is little consolation that the liver could not be transplanted after all.

The tissue had already changed. The liver wasn't transplantable. All the effort and excitement was for nothing. Now it was time to wait again. Waiting for another call. Yes, it was clear that it was now only a few days and not a few months or weeks until the next redeeming call made the phone ring and our hearts beat faster.

I already know what the call means before I answer. It only rings briefly. I answer: "Hello mom, are you going?" My mother on the other end of the line sounds stressed.

It starts. Dad got another call. Now everything has to happen very quickly. He should be in the hospital soon. We're just talking. The conversation with my mother lasts 1 minute and 33 seconds.

1 minute and 33 seconds that make my heart stop for a moment. Everything tingles. I have tears in my eyes. My thoughts race past me like ICEs and I just watch. Unable to actually grab one of these. It's a feeling of happiness. But the feeling of powerlessness familiar from the previous week also sets in.

Heavily packed with a travel bag and a dog pulling at the leash, I arrive at my family's front door. The key noises attract our second family dog ​​and my mother and sister also come running to the door.

You're talking to dad on the phone right now. It's the farewell talk. Now he has to get ready for the surgery. Soon it will start. Now he has to turn off his cell phone. "I'm offline now," comes the voice on the other end of the line. We nod.

Then a single babble of voices from "We love you", "Take care of yourself", "Sweet dreams" and other declarations of love. A last goodbye and the tooting announces: Now it's getting serious.

We inform friends, family and acquaintances. The silence seems overwhelming. I feel sick. From excitement. And out of fear. We go to bed at around 1 a.m. Let's at least try to turn a blind eye.

The phone rings for a split second. We wake up with a start. Mom happened to be awake already and immediately picked up the phone.

A glance at the clock reveals that it is just after 4 a.m. We had expected a call in 2 hours at the earliest. Maybe in 4 hours. A queasy feeling spreads in my chest. Could something have gone wrong?

But Mama's sleepy voice on the phone reveals something else: "Did everything really go well?" I don't hear the answer from the professor on the other end of the line. But you can listen to what Mama has just learned anyway. Dad did it. The surgery went well and he's almost on his way to the intensive care unit.

The loud cracking of the stones falling from our hearts like avalanches must be heard throughout the city. The first step has been taken. Finally, our chance for a normal life again is within reach.

We have breakfast. It's strangely quiet at the table without dad. My mother wants to hurry. She can already visit my father in the intensive care unit today. We never expected that this would be possible. In addition to thoughts of happiness, one topic dominates our thoughts: gratitude.

We are infinitely grateful that this person or their relatives decided to donate their organs. Grateful that medicine has progressed so far and that organ donations are possible. And thankful that my father is being given a chance at life.

In the afternoon my mother comes home from the hospital. We have already seen a photo of dad in our family chat. And yet my sister and I squeeze our mother as soon as she enters the house.

Mama is also radiant from within. Brighter than the sun. Mom shares how dad happily shared that after ten months of being consistently cold, he's finally warm again. Everything seems to feel right.

Dog barking fills the air and tears of joy blur the view of what is happening. At my mother's side, my father turns in the direction of the house entrance. It's been three weeks since he went to the hospital for his transplant. We were able to visit him a few times, but the heartache was great for all of us.

The joy is all the greater when dad comes home after three weeks. Greeted with garland and balloons, we have to hug each other first. The biggest and most important step is done. You can see it dad. He is still thin but no longer appears emaciated.

The skin is hardly yellow anymore and especially the eyes are white again. The power seems to have returned to his body. What comes from his charisma alone: ​​When dad comes around the corner, we see him smile heartily for the first time in 10 months. He seems to be beaming.

The first step has been taken. Together we still have many more steps to take, still a lot of fear and hope and, of course, always sticking together. But the feeling of happiness and gratitude prevails. The feeling of life.

My father is allowed to live. He has been given a new chance and he will use this chance. We will use the chance.

Around 8,700 people in Germany are currently waiting for an organ transplant (as of June 4, 2022). One of them was dad. The other people keep waiting. Waiting for a phone call and life-changing surgery. This year only 176 people had been transplanted by the end of March. In 2021, 2,905 organs were transplanted — not nearly enough for all the people waiting for an organ. Many die because they don't get an organ.

Apply for an organ donor card

Since there is a consent rule in Germany - meaning that you have to agree to an organ transplant while you are alive, or that relatives have to make this decision in the hours after death - there are only a few organ donors in this country. In Switzerland, for example, there is the opt-out rule. All people there are organ donors, unless you contradict this fact.

You can fill out an organ donor card here. You don't have to register anywhere for this. You don't have to choose every organ. Organs and tissues can be excluded freely as desired. The most important thing is to make a decision at all, so that everything can go a little faster after your own death - and, if in doubt, lives can be saved. Alternatively, you can also store your preferences digitally on the iPhone. For helpers, these tips are just as helpful as an ID card.

More information can be found here.

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