#waiting #list #organ #transplants
The existence of Eline, 28 years old, is in limbo. Due to serious ongoing medical problems, the young woman must undergo a small intestine, liver and pancreas transplant.
“Thursday April 25, 2024 will be the big day. On this date, I will officially be placed on the waiting list for a small intestine, liver and pancreas transplant. A very heavy operation, but vital for me, who has suffered from significant health problems for half of my life. It all started during the summer vacation of 2009, when I suddenly felt unbearable stomach pains. After an emergency admission to hospital, it was discovered that gallstones were the cause. I had to have surgery, but I recovered pretty quickly, and for a while I didn’t have any worries. Until, three years later, an internal abdominal hemorrhage occurred, the result of abdominal vein thrombosis.
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From that moment on, my health deteriorated. My abdominal arteries are the main culprit. They are narrowed and sometimes even completely obstructed, with all the consequences that this entails. I have gone under the scalpel several times in recent years. Doctors tried to remedy the situation by using an artery in my buttock as well as artificial arteries, but unfortunately, these interventions were only temporary solutions each time. And sooner or later, I always ended up back where I started. The last scan that I carried out in December showed for the umpteenth time that one of my veins was completely blocked, even though I had only had surgery six months earlier. It was a never-ending ordeal, hence the idea of a transplant. There is, in the end, no other choice. Doctors cannot continue surgery indefinitely.
A few years ago, I had my spleen removed. It had become twice as big as normal due to stenosis. This organ has important functions, such as filtering the blood and stimulating the immune system, but we can live very well without it. Which is unfortunately not the case for the three other organs for which I am now waiting for a transplant.
Between hope and fear
Most people are on the waiting list because one of their organs is failing. I am an exception to the rule. Even if the problem is with my veins, I have to transplant three new organs, from the same donor and preferably at the same time. A transplant is the best option I have because my narrowed and blocked arteries require more blood to be pumped. My heart therefore has to work harder, increasing the risk of thrombosis. If I were to have another internal bleeding – this has happened three times already – and it was not detected in time, it would be life-threatening. And in the worst case scenario, my vital functions would decline, possibly leading to shock and death.
My reaction when the doctors told me I needed a transplant? I know that such a drastic procedure is not decided lightly. A team of specialists studied my case, weighed the pros and cons and all came to the same conclusion. On the one hand I had prepared myself for this option and I hope that it will help me live better, but on the other hand I realize that I will have to face a very big ordeal.
This situation sometimes makes me imagine the worst. I have narrowly escaped several times and I know that when my time comes, it will be like this.
And I’d be lying if I said I wasn’t afraid of what lies ahead, especially mentally. I dream of a life that is not dominated by medical problems and constantly failing health. I consider these transplants a second chance and, I hope, an open door to more carefreeness. But there will also be consequences and I am well aware of that. For example, I will have to take anti-rejection medications morning and evening for the rest of my life. And it is always possible that rejection symptoms will still appear and that my body will not or no longer accept my donor’s organs. I will also have reduced immunity and therefore be more susceptible to viral and bacterial infections. I will have to be extra careful to avoid any contact with sick people as much as possible in order to limit unnecessary risks. After the operation, I will have to prioritize my body and think about my health above all else, but I am already looking forward to the rehabilitation process. This will be a long-term job. I know what it’s like to be in intensive care and that it’s what it takes to strengthen my body, but I hate the idea of losing some of my independence again for a while. I will first have to go backwards before I can, hopefully, finally move forward. But it will be for a good cause.
On hold
A few weeks ago, I underwent all the pre-transplant tests, but I still have no idea when I will be transplanted. I’ll find out via a phone call, which could come anytime starting next week, when I’m officially on the waiting list. From that day on, I will have to be available 24/7. And when I am called, I will have to go to the hospital immediately. I had deliberately chosen to wait a bit, to give myself time to get used to the idea and prepare myself mentally. Unlike many others, I had this luxury, but no one can predict how long it will take before the operation can take place. It usually doesn’t happen very quickly and I have no idea how many people are waiting to receive the same organs as me. However, I was informed that I was second on the list and that I had access to all the donors from the countries included in Eurotransplant, but it all depends on whether a potential donor is compatible or not. I don’t know who he will be, but I am already so grateful to him.
A few years ago, I had my spleen removed, a non-vital organ. Which is unfortunately not the case for the three others for whom I am now waiting for a transplant.
Even though I’m still only 28 years old, this situation sometimes makes me imagine the worst, but I’m not afraid of death. I have narrowly escaped several times and I know that when my time comes, it will simply be that way. We have no control over such things. And knowing that someone will have to die for me to be okay leaves me with very ambivalent feelings. I wish everyone as much time as possible and a long and happy life. I try not to dwell on these thoughts too much, because it will only lead to me being more uncomfortable, when there is nothing I can do about it. I am of course extremely grateful for the evolution of the medical world and that feats such as organ donation and transplantation are possible.
If I were to die of brain or heart failure and I still had organs that could be used and could help someone or even save them, I would be only too happy to donate them. It’s very beautiful to be able to help your fellow human beings even after passing away and to continue to live in them in a certain way. And I find that the fact that each of us is now automatically a potential donor is really positive. For some, a transplant is the last resort and there are so many of us on waiting lists. 25 years ago, my maternal grandfather was waiting for a new heart valve and died before receiving a call. And unfortunately, he is far from the only one.
An unfortunate coincidence
The impact of this situation on my life, at every level, is inevitable. Due to my state of health, I can no longer carry out my job as a cleaning lady for the moment. And my social life is also at an all-time low these days. Fortunately I have a lot of support from my wonderful husband, Thomas, and those close to me, but it’s not easy for anyone. This affects not only my existence, but also that of everyone dear to me. It may be me who goes to the fire and has to face all these hardships, but they bear the brunt too. Many people also say they sympathize with what I’m going through. It’s well-intentioned, but I don’t like hearing it. I am aware that my situation should not be minimized, but I cannot stand pity. I would much prefer to be offered a listening ear or a comforting shoulder when I need to confide. I try not to complain and to draw positives from everything, including this situation. I’m happy to think this way, because if I were pessimistic, it would probably be much more difficult to face this reality. I might give up or have very dark thoughts.
Knowing that someone will have to die for me to be okay leaves me with very ambivalent feelings. I wish everyone as much time as possible and a long and happy life.
Now that I’m almost thirty, I sometimes wish I had a slightly more normal life. When I was younger, I had an easier time accepting this situation. But at the same time, there would be no point in cowering in a corner, crying and wondering why all this is happening to me. It’s just bad luck, nothing more, nothing less. Fortunately, there is also some good. I have gained a completely different perspective through the challenges and am able to appreciate the little things more intensely. I also rarely do a mountain of details. These are qualities that carry me and that I will continue to cherish in the future.
When we are young, we are pushed to have a career and build up a good reserve of money for later. But it’s not at the top of Thomas and I’s list of priorities. Instead, we consciously choose to enjoy now, because we know better than anyone that some things are beyond our control and that life is fleeting. Tomorrow is not promised to anyone, so what is the point of holding back for the future? We have just returned from our first plane trip. Just the two of us, in the sun, to clear our heads. This was a great relief and allowed us to recharge our batteries. As long as it is possible, we intend to continue to enjoy life. »
Organ donation
1,468 Belgians are currently on the waiting list for a transplant. Would you like to know more about organ donation? Meeting on clicpourledondorganes.be
Texte de Marijke Clabots, Barbara Wesoly et Ana Michelot
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