Could you please tell us who you are, and something about your background?
- I grew up and lived in a little village near Trollhättan until I was nineteen, with my mum and dad and two siblings. We’re all very close in my family, so even though the period of my illness was tough for us all, my family has been a tremendous support and a secure haven for me that I couldn’t have managed without. My illness was discovered in 2009, when I was 14, and in the beginning nobody knew what it was and I had to undergo various examinations. It turned out that I probably had autoimmune hepatitis and primary schlerosing cholangitis, which is like an inflammation in the liver that can lead to cirrhosis of the liver. Even today, doctors are uncertain whether I had both diagnoses but that’s what they believe anyway. These two illnesses are closely related and sometimes it’s hard to draw a sharp line between them, but I probably had a mixture of the two. The doctors decided that heavy doses of cortisone and a liver transplantation within the next few years were the best solution.
- When I was 19, I moved to Gothenburg to study human resources management and have now got my qualification. During my time as a student I met the man I’m now living with who has naturally also given me enormous support and security without which I couldn’t have coped. Obviously, it’s been a tough time for him too, but now that we’ve got through depression, transplantation, anxiety attacks and a long wait together, we’re stronger together than ever, which is a bit of a cliché. We’ve really had to experience the other’s true self, and to accept that things are not always that easy.
Could you please tell us what you had to go through? Your thoughts before transplantation and now afterwards? What transplantation has meant for you and your family?
- The treatment I was given helped me to survive without transplantation for many more years than the doctors had believed possible in the beginning. Transplantation was always part of the future and you never arrive at the future, so it was a shock when the doctors thought it was time to start the transplantation preparation procedure to put me on the waiting list. The transplantation preparation procedure started in the summer of 2017 and carried on for about 5 months since there wasn’t any great panic to get me onto the waiting list. About a month before I was put on the waiting list, after a hectic week at work, I suddenly lost all my energy. During the weekend, I had no strength for anything and I had to report sick on Monday. My idea was that I’d be back at work on Tuesday or Wednesday the same week when I’d recharged my batteries. But it is only now, about one and a half years later and after my transplantation that I can even consider returning to work. It was probably fatigue with physical exhaustion on account of the illness but also mental exhaustion because of all that was going on. It led to a depression and panic anxiety attacks that were something extra that I had to deal with over and above the waiting.
- The period spent on the waiting list was tough in many ways, since I was obviously waiting for that phone call and wanted it to come as soon as possible since I was getting worse and worse. During the last period before the operation, I had no strength to go out and was also prevented by the anxiety attacks. At the same time I was also afraid to get a phone call, since I didn’t feel ready for the operation. Some days I really wanted the call to come, but at the same time I couldn’t hope for that, since a phone call would mean that somebody had passed away and that there were now relatives left behind and grieving. Therefore my feelings were extra split between wanting and not wanting the call, since I couldn’t wish for somebody to die. I also felt disgusted about having someone else’s organ inside me, which made me almost wish they would take my name off the list. However, my love for those close to me was so strong that I didn’t want to hurt them by cutting my life so much shorter as would have been the case if I’d chosen not to have a transplantation. I would rather feel bad myself than have them feel bad. Now, when I’ve had my transplantation, I don’t feel any disgust at all, having seen photos of what my sick liver looked like and that being one of the worst things I’ve ever seen. So even if the liver I have now has belonged to someone else, it is in any case healthy and in good working condition.
- That phone call from the transplantation coordinators came twice for me to be a reserve, which meant that I would get the liver if the person before me in the queue couldn’t take it for some reason. Then one had to be ready within a minute or so either to go back home or to get ready for operation. It took weeks for me to recover mentally from all the extra stress. However, the third time it was my turn, the liver was mine. This was slightly more than one year after I’d been put on the waiting list. They can’t guarantee that there’ll be an operation before one is actually lying on the operating table, however, in case something doesn’t look right. But everything looked OK and the liver was perfectly compatible with me. Afterwards they said that the operation couldn’t have gone better, and that even though they had problems during the operation, they solved them in the best possible way. Even after the operation, my blood values have continued to improve steadily. My pulse is still a bit high and I’m still very tired, but after only a week I felt better and was more energetic than I’d been for many years. What a wonderful feeling! My family and closest friends have also been able to relax and don’t need to be so worried about me any longer. I can’t imagine how tough it’s been for them, and I think it’s almost tougher to be a bystander than to go through it oneself.
If you want to and know who the donor was or is, what are your thoughts on that?
- I don’t know much about the donor, only that the donor was taller and broader than I am, as one surgeon told me after the transplantation. Since I’m quite tall for a girl, I think the donor must have been a man. But that’s only a guess, the only thing I know about is size, what the donor died of and that the donor was young. I don’t really like speculating any more than this, but it’s necessary for me to have some kind of picture of the donor to be able to grieve and be grateful to the donor and his family, but I don’t want to have too clear a picture because then it would all be too real and that would be harder for me to handle. I feel guilt, mainly towards the donor’s family, that I’m alive and enjoying having my life back while they are grieving for somebody they love.
There’s so much that people don’t know about organ donation, for example why one may need a new organ, how was that in your case? How do you see the future, any plans? If you think it important, why do you think it important to know about organ donation?
- I want to focus on the importance of making a decision about donating one’s organs if the question should arise. To have made a decision makes things so much easier for the families and relatives at a very difficult time. Donating one’s organs can save many lives. If one is willing to receive organs if one needs, then I think one should also be willing to donate organs. As someone who has been on a waiting list and been transplanted, I also want to spread information about organ transplantation so that people can understand that one not only feels enormous gratitude but that there are many other feelings involved too, and that it is actually a complicated operation. Also, many people feel that they lose part of their identity when they get well, which doesn’t necessarily mean they are less thankful but just that it is a complex situation with lots of different emotions.
- When I was 23 all I had energy for was to sleep 18 hours a days and lie around on the sofa the rest of the time, no life to speak of, so of course I’m incredibly thankful to have got my life back even though it has been a very tough time as well.
Thank you, Sofia, for sharing your story! Remember to make your wishes known, we can save lives together!