What are patient reports
My second chance (by Sandra Fasching)
When it finally became clear almost ten years ago why I had such high liver values and a three-year search for the cause came to an end, I was relieved at first. The uncertainty was over, but this relief soon gave way to the shock of having an incurable disease and the certainty ... the end of the line for a liver transplant. Today I am more than aware of the misconception that was ... the end of the line transplant. Because the transplant was a new beginning, my second chance, a new, given life. Anything but a terminus.
After the phase of shock and repression were over and thoughts like "Why me", why, why and why no longer played a role, I began to deal with myself and my body in great detail. I learned to arrange my life so that the increasingly frequent tiredness is not so noticeable. Since I never felt or wanted to feel like a sick person, but always as a healthy person, I only noticed the slow but steadily deteriorating health situation very slowly.
When I then found out that I should introduce myself to the AKH in order to get on the transplant list, my first reaction was: “I don't like that at all now!”. Well, when does it fit you? Today I know that the timing was very well chosen. Now I slept most of the day, my family ran my household so that my husband could spend the time I didn't sleep with me. I was on the waiting list for four months. Including the last two months on sick leave because it would have been impossible for me to go to work. My life was just sleeping and meeting friends so as not to let my social life fall asleep. But all of this was only possible with the support of my whole family. During this time I never lost my courage or my conviction that everything will go well. Positive thinking just influences everything !! The transplant team suggests that you should continue your life as normally as possible while you wait. Easier said than done, of course. Still, it's really very important!
I tried that too, even if I didn't always succeed. So I drove home in a rush from a short vacation at the Attersee, because I imagined that the cell phone had no reception and that I checked it all night long. So no trace of relaxation. I have also heard every radio report about the landing of the emergency doctor's helicopter, you shouldn't believe it, it lands really often. Since I live near the Donauspital I also heard this helicopter several times a day and always thought to myself, so now it will be soon. But then everything was completely different: the phone call from the transplant coordinator reached me on November 21, 2000 at eight o'clock. The question of whether I had time, because there was a possible organ for me, was easy to answer, because what else do you have before the whole day.
I could forget the plan I had rightly laid out for this case. Because everyone was more nervous than I was, so I called my employer, my parents and my best friend myself because my husband was way too nervous. Once again I was relieved, relieved that this waiting period was finally over. In the hospital, I found the enema before the operation the most unpleasant thing about the whole thing, because I was convinced that everything would go well. In the operating room I was excited when the nurse said to me shortly before the anesthesia I should think of something nice and dream well, but in the rush I couldn't think of anything suitable.
Then I woke up in the intensive care unit, intubated, as I was told about it before. When the tube was removed, I wanted to know exactly how the operation had gone, what which device meant and, of course, whether I had rejected the organ.
Every day in the intensive care unit, I set myself my own little goals: sitting on my side, helping with the washing and at the end I even walked up and down the corridor with my husband (with my catheter in hand). Then came the next hurdle, everything that seems so easy in the intensive care unit is no longer quite so in the normal ward, because suddenly you don't have a carer to yourself. But you get used to it quickly. I diligently practiced the things that I was told every day. Every day you have to overcome your weaker self, because nothing is given to you.
Then after thirteen days the day of discharge finally came. You are overjoyed at home and suddenly everything is harder again than you felt in the hospital. My own bed in particular was a challenge: much deeper and not adjustable. The washing also took a lot longer, you can't bend down, you can't lift more than a kilo and still want to do everything.
Because you now have this infinitely beautiful energy. Suddenly I was no longer tired after every little effort, I could have uprooted trees if I had been allowed to, because they are known to be heavier than a kilo. From day to day life is becoming more lovable and worth living, of course there are minor and major setbacks, but the trend is clearly still up. Suddenly I knew that I wasn't as healthy as I thought I was and that my life wasn't nearly the same as it is now. Three months later I went back to school and my life is back to normal. Actually, it is not a completely "normal" life, because my checks at the AKH have of course stayed the same and a number of drugs have to be swallowed, but the most important thing is that it is my second life, a gift from someone whom you don't thank can. A gift that you simply accept!
Report about my kidney transplant (by Elisabeth Nagl)
I was diagnosed with kidney failure due to a prolonged illness. For me a world collapsed back then. Mentally, I fought a lot about the function of my kidney function. Again and again I thought that they would certainly take up their function again. The very thought of being on dialysis terrified me. Thanks to my attending doctor, I learned to deal with the CAPD and my restricted kidney function very well. Despite the dialysis and some health incidents and thanks to the full support of my family, I had a wonderful and happy time with my illness. Meanwhile I started my medical studies. So I didn't have much time to think about my fate.
Of course, I kept trying to imagine what it would be like to have my own functioning kidney. I bought a pager so that I could always be reached if a suitable kidney was available for me. But this wait has always bothered me a little. I was afraid of the time when I would be "asked" to come to the hospital for a transplant. I didn't want to be torn out of my life as I coped very well with my condition. Besides, I've already seen my life as normal. Life without dialysis was no longer imaginable.
However, after my values worsened after a 3-year waiting period, my doctor advised me to donate a relative. At first I discarded that thought. There was never any question of risking my parents' life. I knew very well that a donor with a kidney could lead a normal life. But there is a risk that the 2nd kidney can become inoperable for various reasons; And why should I expose the people I love most to this danger ?! Besides, I didn't want to admit that there shouldn't be a foreign kidney for me of all people.
After the immunological tests that my parents had undergone after some deliberation, it was now clear that both would be considered potential donors. When my parents were ready for a kidney donation, I was given the choice of whom I would prefer to have the kidney from. It felt like I was picking out a commodity! The results showed that my father's kidney matched my values slightly better than my mother's, although it would not have been a problem to accept my mother's kidney either. After long deliberation, I decided in favor of my father as the donor. I knew from my mother that she would be disappointed with my decision. She was in favor of giving me one of her kidneys from the start. But I felt that I had to trust my feelings. My mother always helped me with her strength and her encouragement to get through bad situations in my life more easily. And I knew that my father and I would urgently need her as a support after the transplant. "Because my mother is better for me than any medicine I can buy in the pharmacy!"
The day of admission to the hospital for the planned transplant was very bad for me. I felt so locked in and helpless. I was afraid for my father that I would reject the kidney or that serious complications might arise. It was such an uncertain future for me that I couldn't see its positive side in this situation. Why take it all on when I could live with dialysis? I was very desperate.
I was very still on the morning of the operation. My father was the first to be brought to the operating room. As I sat alone in the room, I let my tears run their course. But they relieved my soul and I imagined what my world might look like in a few weeks.
When I woke up from my anesthesia, I was being taken to our room. I immediately turned my gaze to my father's bed. I heard his familiar voice telling me that he was fine. Suddenly I was so relieved! We had the surgery behind us, thank God! I put my hand on Dad's kidney, which was mine now. A pleasant warmth flooded me and I fell asleep calmly and relaxed.
As it turned out after a few days, my new kidney immediately “jumped” and worked without any problems. Of course, there were still difficult hours for me after the transplant.
After 2 weeks in the hospital, I was released into home care. For a long time I could not realize that I would no longer need dialysis. I started to cry when I saw my IV pole. I was so confused. I couldn't understand the happiness of being an independent person again. I kept thinking that the kidney was just a kidney substitute. I considered urinating a miracle every time, even though it was in great pain. I first had to learn again to live with a functioning kidney, to be a free person again. For the first time in 4 years, I was able to be away from home all day without having to take any medical aids with me.
I have never regretted the decisions I had to make back then. My parents gave me a life again.
My kidney is working fine. I still enjoy my kidneys every day and look after them as best I can. Regular medication, plenty of drinking and careful monitoring of kidney function are my top priorities. Now I see it as a positive fate that I did not have a foreign kidney back then. Because I find it wonderful and pleasant to be able to carry a piece of my father inside me.
I finished my studies early and have been fully employed for more than 2 years. In the meantime I have moved from home and lead an independent life that I enjoy very much. The relationship with my father has become noticeably more intense. We've somehow become very similar. He is my best friend, who is always at my side with his advice and experience in all of my life's questions, which I now have to deal with on my own. My mother and I are still best friends and I thank her for the self-sacrificing love that she has shown throughout my long illness.
Transplant report from my father's point of view
My daughter's seventeenth birthday was the last carefree event in my life for many years. A few weeks later my daughter began to have a fever. A subsequent examination in the hospital confronted my wife and I with the initially unimaginable result that our daughter was very seriously ill. From a medical point of view at the time, incurable and in the long term, kidney damage. The chemotherapy necessary to stabilize the disease, which in the opinion of the doctors treating the patient at the time, should be the best possible therapy to prevent further damage to the kidneys, sometimes required hospital stays of several weeks. After my wife, my son and I had overcome our initial desperation, we realized that our daughter would only have a chance of an independent life in the future if we help her to continue and finish her education despite her severe impairment . So, in some cases against dissenting opinions, we “took her into the middle” and enabled her to complete her schooling until she successfully passed her school leaving examination. An important milestone in her life and a great sense of achievement for her.
Our lives slowly began to return to normal when kidney failure occurred despite constant medical supervision and therapy.
The thought that from now on our child would also be a dialysis patient was in a certain sense a failure. The medical team at the new ward, which was now responsible for my daughter, suggested that we use peritoneal dialysis as renal replacement therapy. A system that was completely unknown to us until then. With a lot of empathy and care, the medical team succeeded in convincing us of the advantages of this type of dialysis. After a while we seem to have managed to accept our child's condition as natural and part of their life. Soon we returned to our usual rhythm of life. Looking back, I can confidently say that during this time I wasn't dissatisfied, maybe even a little happy. My daughter resumed her medical studies, which she obviously enjoyed.
The functioning of their own kidneys was also steadily improving, and I very much hoped that one day they would be able to work satisfactorily again. But after about three years they finally failed.
Not an easy situation because we had to realize that a kidney transplant was now inevitable. After a few months, my daughter's doctor informed us about the possibility of organ donation by a close relative.
Our first reaction fluctuated somewhere between incomprehension and rejection. “Why?” We asked ourselves, “is there no donor organ for such a young person who is only at the beginning of his life?” My daughter also resisted this suggestion because she was afraid of putting her parents in danger. Our doctor was very patient and finally convinced us that this was the best possible solution for our child. My wife and I underwent the necessary preliminary examinations, at which point I was finally identified as the suitable donor. It was not easy for my wife to accept this decision.
As skeptical as I was about this project at the beginning, from that point on I was convinced of the correctness of our decision. Although it was the first time I had to undergo an operation, the thought of it no longer frightened me. The day we moved into our hospital room at the Vienna General Hospital surprised me with somewhat mixed feelings. I was thinking less of myself, however, but wished with all my heart a success for my child. Unfortunately, our transplant had to be postponed for a day for organizational reasons, which had a rather stressful effect on my daughter. I tried to give her strength so that her now positive attitude does not overturn.
The morning of the following day I was taken out of the room first and I will never forget the last look at my child. I felt their hope and at the same time their fear. Then my memory is lost. When I regained consciousness I was still in the recovery room. I was pleasantly warm, felt good and had the impression that everything was fine with me. A doctor informed me that my daughter had already had the operation and was fine. In the evening we were both back in our room. We only exchanged a few words and were both very relieved. I was longing for my wife to talk to and share the relief of the first hurdle with her. But unfortunately she was not allowed to visit us that day.
The next few days were very difficult for us. But in the midst of the loving medical care and mental custody, we apparently recovered faster and more easily than expected.Every day my confidence increased a little more. My daughter was not yet in such good spirits because the consequences of the operation were far more serious for her. But after about two weeks we finally made it and were released home.
The operation has not affected my life in any way. After a short recovery period, I returned to work. The only change I have experienced is that I am now more conscious, paying more attention to my diet, and going for a check-up once a year. The only difficulty in the time after that was "letting go" of my child. In the past few years I had somehow developed into her life manager, at least that's how I felt. Our inner bond is still much closer than ever before, we think and feel much more similarly than is the norm; kind of like twins, it seems to me.
A new phase of life began for all of us in the truest sense of the word. My daughter finished her studies early and started working. In the meantime she has moved into her own apartment and is completely independent.
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