Contents
«There was a worst-case scenario in my head – that I would die on the table. To this, think: if something else happens to the husband, who will raise our child? However, he did not let him translate it ». Two years ago, Karolina had a kidney transplant. Her husband was an organ donor. And although she was terribly afraid then, today she says that it is worth fighting, because thanks to this she regained her life. What does a living donor transplant look like, what are the fears and fears of recipients? Karolina told us her story.
- Karolina found out about her kidney disease by accident. After research, it turned out that it was IgA nephropathy – the most common form of glomerulonephritis
- Six months later, she learned from her doctor that a kidney transplant was necessary, otherwise she would be condemned to dialysis for the rest of her life.
- Karolina’s husband was the kidney donor, although she herself was afraid of it
- Two years have passed since the transplant, and Karolina’s life has changed by 180 degrees. «You can say that thanks to the transplant I have regained them»
- You can find more such stories on the TvoiLokony home page
Unexpected diagnosis
I found out that I have sick kidneys by accident. It was like a bolt from the blue. It was early morning, 2014. My husband was getting ready to work, I could lie down for a while. My own vomit broke me out of my nap. It was so intense that I was kneeling on the floor and vomiting. I didn’t know what was wrong with me. The only option was to go to the emergency department as soon as possible.
In the emergency department I was examined, my blood pressure was measured … I was 180/130 (dangerously high, requiring immediate treatment; optimal pressure is about 120/80 – editor’s note). I got an urgent referral to a nephrologist. I found a wonderful doctor who gave me a great sense of security, especially in the face of what happened next.
- Pressure – norms, arrhythmia, pressure spikes [EXPLAIN]
Six months after that event, I had a kidney biopsy. The result was unambiguous: IgA nephropathy – the most common form of glomerulonephritis. Physically, I felt fine, but mentally it was much worse.
My doctor did not give up, he ordered further tests and more. The steroids that I was taking, unfortunately, did not stop the development of the disease. The only thing I could do was monitor my blood pressure tightly, drink plenty of water, and diet, which meant giving up dairy, fast food and cutting meat. I had to switch to other food immediately, and my husband also changed, so I felt much better. And this is how we operated day by day.
Photo Private archive
At the end of 2016 I got pregnant – it was the best time, because neither I nor my doctor could predict my condition in a year or a half … There could be problems with getting pregnant, the risk of miscarriage could be higher.
I had dialysis throughout my pregnancy. Five days a week, each for four hours. Then I set a goal for myself: never having to go through this again. I did not want to subordinate my whole life, dreams and plans to these endeavors. I do not wish this on my worst enemy.
- Diet in kidney disease
I went through the pregnancy without complications. Today we have a healthy, energetic daughter. After giving birth, my results were not worse. I was very happy about it.
The specter of a transplant and anxiety
All the time I was hoping that the transplant would not happen, but this thought was with me the whole time. It had a great influence on the psyche. Because while I was feeling good physically, emotionally it was really tough. Day after day I was afraid – either for myself or for my daughter.
In September 2018, my fears came true. It was a routine monthly check. When the doctor saw the results, he just looked at me and I knew. A transplant is necessary, otherwise I had to undergo dialysis for the rest of my life. I cried, but my doctor said, we’ll get through this together.
There was a worst-case scenario in my head – that I would die on the table. To this, think: and if something else happens to my husband, who will raise our child? Transplant was a necessity, but I didn’t want my husband to be a donor (my parents couldn’t become one). If something had happened to him, I would never have forgiven myself. However, he did not let him translate it.
- The five worst kidney diseases
He did the necessary tests (to determine the likelihood of transplant rejection) and in June 2019 it turned out that he could donate my kidney. Then Ms Ola, our transplant coordinator, said: see you in a week for surgery. The accidents sped up.
Husband’s surgery day and my transplant
I remember the day we went to the Infant Jesus Teaching Hospital as it is today. It was Wednesday, there was surgery on Thursday. The husband, of course, was to be operated on first. He started to get nervous maybe 10 minutes before they took him to the operating room. I was shaking from the moment I found out there was going to be a transplant.
My husband was taken to the operating room at 8.30. I stayed in the ward. The surgery lasted about three hours (he was operated on laparoscopically). During this time, I sat in the room and cried. Then Ms Ola came up to me asking what had happened. I replied that my husband was operated on and I had no idea what was happening to him. What did Mrs. Ola do? She went, checked him out and texted me: «He’s out of surgery. He sleeps like a gopher. Everything’s all right”.
- Laparoscopy – what is this procedure
Half an hour later it was time for me. My operation lasted two hours, so much less. When I was lying in the operating room, Ms Ola came to see me. She grabbed my hand, smiled, stroked my head and said: “I will stand here until you fall asleep …”. Then I woke up. I slept great.
After the operation, I was sore, but it was good pain – I knew it was all over, and when the doctor on the round said that the kidney had started working right away – the joy was double. I also had a JJ catheter (a JJ catheter is placed in the ureter to ensure a free flow of urine from the kidney to the bladder – ed.). After the surgery, I was telling myself: you had the pregnancy, you had a baby, now you can’t do it? And so, in small steps, it was better every day. The most important moment was when, after waking up, I heard my husband’s voice (we were lying together in the recovery room). Then all emotions fell off me.
We felt better every day. My husband left the hospital on Monday (after five days), and I left the hospital a day later, but only because of poor morphology (after leaving the hospital, I had regular checkups, of course). The worst-case scenario was that in the event of complications, I would spend up to three weeks in the hospital. I was afraid of that. I was afraid that my husband had sacrificed himself, gave me the kidney, and she would not accept it. Fortunately, this did not happen. But the pressure was enormous.
- What do the kidneys do and what do kidney diseases manifest?
Before and after the transplant, I received tremendous support from the hospital staff. Nurses, doctors, orderlies are doing a really good job. Empathetic, smiling, patient. They are wonderful people who are dedicated to their work.
After three weeks, I returned to the ward, but only to get rid of the catheter (the procedure is short, hospitalization is not necessary – editor’s note).
A life regained
Two years have passed since the transplant, but since then my life has changed 180 degrees. It picked up some colors and pace again. You can say that thanks to the transplant, I regained them.
Although I have to take medications for the rest of my life, thanks to which the body will not reject the transplant, this is no price to pay for the fact that I can live a normal life. Over the years of my illness, I almost forgot what this life could be like. Today it seems to me that the six years that passed from diagnosis to surgery were forever.
The biggest change was that I was finally able to take care of my daughter normally. Before, I was always tired, and my daughter was more energetic every day and needed more and more attention. Meanwhile, I could not keep up with her, I was not able to play with her as I would like. I couldn’t forgive myself for that. Fortunately, this is now a thing of the past.
I have dreams that are just being realized. My husband and I plan to build a house, our place on earth. We raise our daughter, we watch her grow. We want to instill in her a passion for joint spontaneous trips. I’m sticking to it. And I am happy – so simply happy.
It is easy for me to say now that there is nothing to be afraid of, because it is all over. I also know that it is difficult to talk about it with relatives, because they are not sick and they may not understand. Nevertheless, it is worth trying – it is a source of enormous support that motivates to action.
Today I know that you have to try to overcome fear, not give up on it. And this is what I would like to say to those who are waiting for a transplant and to all those who may encounter such a situation: fight for yours, do not take away the chance for a normal, happy life. Transplant is such an opportunity.
You may be interested in:
- The disease does not make itself known for a long time. The first symptom is getting tired easily
- A silent epidemic that is not talked about. Over 4 million Poles have a problem
- The seven foods that damage our kidneys the most
- Most patients die before they receive surgery. 95 percent does not know about the disease