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Grzegorz's he alth story could turn out to be a great script for a movie. Hepatitis 2 almost killed him, but he did not give up - he underwent a transplant, and after 10 years he took part in the Ironman triathlon competition. Today, he supports other recipients, dialysis patients and pre-transplant patients as part of the foundation he founded.
Patrycja Pupiec: You said that you have experienced three miracles. The first is finding a liver for transplant, the second is a successful transplant, and the third is that you have recovered to full strength. Please tell more about it.
Grzegorz Perzyński:The first miracle was that the liver was found at the last minute. Due to my he alth condition, doctors did not give me many chances of survival. My mother then heard that if the liver was not found the next day, I would die. I waited for weeks for the organ, unfortunately with no effect, so why should I get it then? Still … it worked.
While the story is extraordinary and has a positive ending, that doesn't mean it was easy to beat against he alth problems, right?
I was in terrible condition, a few days before the transplant, there was no contact with me. The chances of survival were minimal, and for many weeks there was no liver for me, so I see it as a miracle. The second miracle is the fact that she caught on, despite the fact that my body was already extremely exhausted and exhausted by the disease. If it weren't for the fact that I had a he althy heart, I wouldn't even have survived a massive infusion of blood because the clotting index was out of scale. The mere fact that the new liver got operational in this situation was amazing.
This third miracle is the fact that I managed to get back into shape, back to life. In fact, I had to re-learn everything. From the very lifting of the torso, to just sitting on the hospital bed, and then just standing on your feet. The time after the transplant and the physical rehabilitation itself was an extremely difficult moment for me. I was getting into physical shape, but I missed mental rehabilitation.
Where did you get the strength from?
I think my athlete spirit and positive attitudeplayed a huge role. I didn't want to and couldn't give up, I had to push forward if I got the chance. In 2002, finding any information on how to manage a transplant was not available to the common patient. Initially, I thought that my brother's kidney transplant experience would help me, but for him it was completely different. Besides, every transplant patient must experience it personally, including unimaginable stress and mental burden in fear and fear for the newly acquired life.
Luckily my brother didn't have to go through this as dramatically as I did. It can be said that he was, in a way, a "pioneer" in the field of transplantation in our family, but in the opinion of experts, these were two independent cases. Although I have never performed complicated genetic tests - one can speak of an unfortunate coincidence.
A chance for a fresh start?
Transplantation saves lives and gives you the chance to enjoy it. It is a huge value, and I know what I am talking about (laughs). How he can get a person out of some kind of extreme situation, and in my case a dramatic one, is incredible. Before the transplant, I felt that I was dying. I was aware of this, because I was urgently referred for surgery. My condition was severe, I was "driving on fumes", I was on dialysis, because it was already a hepatorenal syndrome, encephalopathy progressed, i.e. neurological disorders related to liver failure.
It was getting worse, I didn't even have the strength to pick up the phone. Even before the transplant, I had problems with treatment, but my mother then took everything on herself, traveled to offices and hospitals and accelerated the process. It is also thanks to her commitment that I can live today!
You were surprised by your illness, right?
Yes, the diagnosis turned out to be a surprise to me, because I was always he althy, practiced sports, I was really active. One of the first symptoms that caught my attention was my lack of strength. There was drowsiness, no appetite. I went to a specialist and it turned out to be hepatitis B probably. Later I heard that the doctors were no longer able to help me. Overall, I've always been a positive guy. Even in the worst moments, despite the circumstances, I knew that while everything was against me, I had a feeling that I would get out of it, even though there was no hope and I felt worse and worse.
What happened next?
Then I was taken to the hospital. I was 27 years old and had cirrhosis of the liver for many years. Obviously the virus hastened my deterioration, but it was introducedtreatment, had a positive effect for a short time. Then there was a successful transplant and a difficult recovery. My weight dropped below 50 kilograms, I had no muscles, no strength, even though I have always loved sports. It wasn't easy for me, but I had to start over. Completely new. I had to learn to sit down, to walk. After several weeks of rehabilitation, I was able to return to work.
You loved sports and the disease took your strength away. It must have been especially difficult from the perspective of such an active person …
I remember a situation where a patient came to my hospital room who also needed a new liver. His condition was much better than mine, he was admitted to the hospital on his own, and I was slowly becoming powerless. When I found out that this patient has the same blood type, I felt even worse, because I am dying here, I am completely exhausted, and he looks as if he is okay. It was a very hard time for my head.
At first I felt total bitterness and a huge disappointment. Of course, I didn't blame this man, and not only because there is a long list of other parameters beyond the blood group qualifying for a transplant, but I couldn't understand why it was all so medically unfair, but also randomly illogical. Then I had to refer to the deepest layers of my optimism and work on my head not to break down at all. It only came with time, after that heavy punch straight in the face.
What is your life like now? Just because you are active does not mean that you are suddenly fully energized, does it?
I still have to be under the supervision of specialists, although I feel great after the liver transplant. Of course, despite the fact that I live an active life, I have certain limitations and the awareness that sometimes I "overrun". Maybe I take a little risk in the eyes of other patients, to whom I personally do not recommend my sports crazes. I do it only to return as much as possible to the public attention to this neglected area in terms of education, awareness, media and PR. I know that I am not the only person who managed to survive, but my chances were really small, and yet I managed to bounce back to this proverbial bottom and today I feel fantastic .
Sport continues to play a huge role in my life. If not for physical activity, my heart would not be able to stand it. We, immunocompromised people, in a way, live on credit. We have to watch out for all kinds of germs, bacteria, pathogens and viruses everywhere. And not only during a pandemic. Somewhere in the back of your head there is such a fear that something might happen, likeeven some symptoms of rejection of an organ that saved my life, and yet it is not given forever, just like everything else.
Even so, you are planning to take part in the Ironman race again.
I try to look for some kind of middle ground. On the one hand, to have satisfaction as an athlete, but on the other hand, to feel that I am not exaggerating. I absolutely advise against such an approach as mine, because we recipients - in a sense - are disabled, although formally it is different. I am, in a sense, an extreme example of a patient who almost died 20 years ago, and today takes up sports challenges that are inaccessible to many he althy people.
Hence the title of my social campaign "From transplant to IRONMAN - 20 years after dramatic liver transplantation". Its main goal is to raise public awareness through the example of the patient, which clearly shows that transplantation saves lives, as well as the distribution of declarations of will. And all this during my running, triathlon and other long-range non-sport events, where you can give away many such statements.
You also help other patients thanks to the foundation.
The LIVERstrong Transplantation Foundation was established in 2022 on the basis of my dramatic experiences and my brother, who had his first kidney transplant in 2001, i.e. a year before my transplantation. Apart from the fact that we want to raise awareness about transplantation in society, we work for people before and after organ transplantation. We already have some achievements in this field, although the current context of COVID-19 and the high mortality rate in our population is not very pleasant.
Nevertheless, we managed to include transplant patients in the first group of vaccination against SARS-CoV-2, or accelerate the process of implementing further COVID-19 vaccines for our patients, by actively participating in the Parliamentary Team for Transplantation in the Senate. A huge success, I have no hesitation in saying this, was the organization of the conference on the occasion of the National Transplant Day in the Senate, and in the Plenary Hall, of which we are very proud of being only a 2-person and self-financing organization. The more so that we managed to invite almost all the greatest authorities in Polish transplantology, as well as several other patient organizations. The session was chaired by the Marshal of the Senate, prof. Tomasz Grodzki and the chairman of the Team, senator prof. Alicja Chybicka.
Also thanks to the foundation you are still in touch withpatients, knows the realities. How much has changed in the treatment of patients requiring organ transplants?
The attitude of doctors has certainly changed. Today they are very open, communication is completely different than before. I remember those 20 years ago, when I was sick, I had problems getting basic information from a doctor. There was nothing to ask. Doctors' standards of communication with patients were questionable. There was no question of any dialogue.
When I asked a young doctor why she ordered me specific tests, I heard in response: why do you need to know? After all, it was not a wrong question, but a question that was very sensitive to me - my he alth. I have always been a conscious patient, but in those days many doctors would rather not have such patients. Even scientific research confirms that this patient awareness is very important for the success of treatment. It can help not only the patient, but the entire healing process.
I also remember another situation, especially absurd from the perspective of the current pandemic restrictions. The doctor thanked my mother for my "mission" because she had previously failed to convince the nurses to wear gloves when taking blood. Imagine that the doctor has been fighting for years with female employees who did not want to wear gloves or who still put them on in the nurses' room, in the meantime taking care of other sick, touching the door handles …
When I asked politely for these basic standards, I turned out to be the so-called "difficult patient". But in the end, I was able to convince these ladies that it was also for their safety. After some time, a whole pack of gloves landed in my room (laughs). Sometimes the medical staff can "kill" the patient, although they should not only provide purely medical and material help, but also mentally support patients.
I myself felt a lack of even elementary compassion, empathy. Unfortunately, I also came across such people when I was in a difficult situation for me, when I was simply suffering. I don't want to demonize, but that was the reality. Today, I especially appreciate he althcare professionals who want to help patients, are empathetic and open-minded.
Is there anything you would like to tell other transplant patients?
It may be trivial what to say, but do not expect too much, but at the same time enjoy the other life as much as possible. A positive attitude really gives a lot and it is worth being optimistic even in the face of the worst, or at least trying, because it can turn out to be a greata chance to survive the worst! But I would also like to convey something to other readers, so that they can discuss their decision to donate organs with their family and friends. It does not cost anything, and it can save many lives when we are no more.
The whole mystery and beauty of transplantation are amazing. Someone decides during his lifetime that after his death, a stranger, whom he will never even meet, will be able to live on. It can save up to 8 other lives. It's so much, for so little, and at the same time, humanly speaking - as much as possible. Today, I can write these words and appeal for this beautiful gesture, thanks to this person who once decided that someone like me can live at all.
Read the other articles from the series I live with …
- I live with Hashimoto: "Doctors told me to eat 1000 kcal a day"
- I live with a disability. "He only received a certificate for a year, because no one believed that he would survive"
- I live with Crohn's disease: "I heard that from now on my life will change a lot"
- I live with a disability. "I don't expect Gabryś to be a genius"
- I live with Roberts' syndrome: "Doctors did not give her a chance to survive, we were supposed to take blood from a dead child"
- I live with bipolar disorder. Mika Urbaniak: alcohol was my escape, it drowned out my emotions