“Don’t think of organ donation as giving up part of yourself to keep a total stranger alive… It is really a total stranger giving up almost all of themselves to keep part of you alive” – author unknown
My husband has a transplant kidney. At the age of thirty-one (in 1999) he was diagnosed with chronic kidney failure, which means that his kidneys were slowly, but very surely, failing to work. When we heard this diagnosis, we immediately knew that our lives would never be the same again, as this meant that sooner or later my husband would have to rely on dialysis and sooner or later he would need a transplant kidney.
To try to postpone the dialysis as long as possible, he had to adjust his lifestyle immediately. He had to watch what he was drinking and eating, he had to start taking lots of medication and we were given an information session on dialysis.
In April 2004 he had to start dialysis as his kidneys only worked for about 8% at that time. From that moment he was put on the waiting list for a transplant kidney, with an average waiting time of two years at that time… but who knows when the call is coming ?! That might be after a week, a month, a year, 3 years, or more…
So from April 2004, my husband had to connect himself to a dialysis machine at home. There are two kinds of dialysis: hemodialysis (for which you have to go to hospital 3 times a week, this is a kidney-replacing machine which purifies your blood outside your body) and peritoneal dialysis. This is the kind of dialysis my husband did the first 3 years. It is a home-treatment which uses a membrane inside your body as a filter to clear wastes and extra fluid from your body and to return electrolyte levels to normal. For this he got a machine at home at which he had to connect himself every evening. At first it was for about 8-9 hours a night, at a later stage even 10-11 hours… hooked up on a machine… relying on this machine to keep you alive… But the longer he had to wait for his transplant kidney, the worse his situation became and finally this home treatment wasn’t sufficient anymore and he had to go to the hospital three times a week to have hemodialysis, still doing peritoneal dialysis twice a week.
We had three small children… we were young, we wanted to do and experience so many things, but we were very much restricted. We were limited in the things we did, the trips we did. We couldn’t go on a holiday, my husband often couldn’t come on outings with the kids, he had several hospitalizations,… we were dominated by his disease. We tried to live our lives as normal as possible, but that wasn’t easy.
My husband’s situation got worse and worse. He had pericarditis, his peritonium got infected, his bowels got into a knot, he had infection after infection… which meant hospitalization after hospitalization… and everytime we had to crawl back… we had to stay strong, we had to encourage eachother to get going. It was such a hard time in our young lives… The insecurity of when a kidney would be available weighed upon us immensly.
But then… one Friday evening in July just after dinner… 4 years and 3 months after starting the dialysis (so much longer than the average!!)… we got a phonecall… THE call… the transplant coordinator could tell us that there was a kidney that could possibly be a match. I cannot tell you what went through our minds… but first we had to take care of some practical stuff, like finding a place where our kids could stay that night. Luckily my sister could take in our kids at such short notice. I didn’t want to burden my parents as they would be leaving on holiday the next day. I knew that if I called them, they would immediately cancel their holiday, but I didn’t want that… they deserved that holiday so much! No… I decided not to tell them as we weren’t even sure the kidney would be a match! And if it were a match, they wouldn’t be permitted to come to visit the first week anyway and by that time they would be back from their holiday.
It was all so surreal… you are being lived at such a moment. Arriving at the hospital, my husband had to undergo several final tests to see if the kidney would be a match and a couple of hours later he could go into the OR. When I first saw my husband after the operation… my god… he was so fragile, so small in that hospital bed, so pale… lots of tubes and machines… he could hardly talk or think… but the main thing was that the kidney was doing its job… the operation had been a success and slowly he could start healing, his body could start adjusting to this strange thing that was put inside of it. It may sound silly and a bit gross… but I was so glad to see that my husband could produce pee again 🙂
After a fortnight, he could already leave the hospital… with a list of medication of course… (most of them he has to take his entire life as not to reject the kidney) and a mouth mask against infections. But he could come home… unlike the guy who had died two weeks before… a 28 year old strong, Polish guy who had had an aortic rupture… a guy whose parents gave permission to give his organs up for donation… this guy… a total stranger to us… who had to die to keep my husband alive…
Well, that is how we always thought of it… someone had to die to keep my husband alive… until I saw this quote. A completely different way to look on organ donation… and yet so true! Because my husband really had to give up almost everything… his body being so ill… and now he is keeping part of this Polish guy alive!
We wrote a thank you note… Or better… I did… My husband had to use up all his energy getting better at that time. But I needed to write that thank you note to this guy’s parents. As glad I was that my husband was saved… I couldn’t help thinking of this guy and his family, how much of a loss it was for them, how much grieve his death must bring to them…
It’s now been 7 years since the transplant and we often think of this guy, an unknown Polish guy who probably saved other people’s lives as well… the heart, the liver, the lungs, skin,… I don’t know which parts of his body saved other people, but I know my husband wasn’t the only one. This guy still lives on in so many other people now… people who would otherwise wouldn’t have stand a chance. We are so grateful to his family. Thank you… whoever you are…
Every country has its own settlement concerning organ donation. I don’t know how it’s done in your country, but whenever you need to make this decision, please decide to give the organs up for donation… I know you will have to make this decision in the worst possible circumstances, but think of all those people that are suffering that same moment… think of all those people who can be helped, who can have a new life just because of your decision… all those total strangers who are eager to keep part of your loved one alive… please agree to organ donation… just think of the fact that your loved one cannot really be dead if he lives on in so many people!
The people you help probably won’t know who their saviour is, but you must know how grateful and thankful they are… you must know that they will remember and honor this total stranger for the rest of their lives…
(thank you to my husband Peter who let me share this story… and thank you Polish guy… for giving us a new life!)
If you want to know more about Eurotransplant, the non-profit organization that is responsible for the allocation of donor organs in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia.
Please do not hesitate to contact your government to learn more about organ donation in your country!