How I live after a kidney transplant, which I have been waiting for two years

IN THE WORLD, more than one hundred thousand organs are transplanted annually , of which almost 70 percent are kidneys. In Russia, over the past year , almost one and a half thousand operations were performed , one of which was transferred by a resident of Novomoskovsk in the Tula region, Nastya Nikandrova. Today she told us about how she was treated for another disease for ten years, what her dialysis was and how her life changed after the operation.    

About the beginning of the disease

In 2002, I was diagnosed with glomerulonephritis (a nephrological disease characterized by damage to the glomeruli of the kidneys – glomeruli. – Ed. ). In simple words, my kidneys were dying. Glomerulonephritis is an autoimmune disease, treating it means suppressing the immune system. The disease is exacerbated when a person develops a severe cold illness such as sore throat or pneumonia. Often they are the same cause of glomerulonephritis. This disease did not manifest itself in any way, it was found in me only by tests. This is the insidiousness of this disease: at most you feel weakness, but usually no one complains about it. When people feel bad, it means that the disease is already running.  

In the fall of 2006, when I was seventeen, I caught a cold. I was prescribed heating, which I had to walk on – despite the fact that it was cold, rainy and windy outside. All this led to pneumonia – he was discovered after two weeks of hemoptysis. When I developed critical phase bilateral pneumonia, my kidneys began to fail. I developed chronic renal failure, which was allegedly the result of glomerulonephritis.

When I was cured of bilateral pneumonia, I ended up in the nephrology department of the hospital. There they injected me with hormones and gave me drips, which suppress the immune system. The treatment lasted a long time, so my life for two or three years centered around the hospital: I lay there for a week, and then spent two or three at home, where I followed a diet and took medications. So the doctors wanted to postpone dialysis, but in the end I still had to do it too.

With the beginning of this aggressive treatment, I went to college, but then I had to quit. My appearance changed a lot, I developed Cushing’s syndrome (a condition that appears with prolonged exposure to hormones synthesized by the adrenal cortex. – Ed. ). Outwardly, this manifested itself in severe facial edema, but it is impossible to confuse it with the usual excess of moisture: Cushing’s syndrome is not like it. When people stopped recognizing me, it was very difficult for me to accept myself. The teachers, thank God, went forward. Then, however, I managed to return to school. 

About dialysis

Dialysis started in 2016, which in my case was peritoneal. It is not like conventional hemodialysis, which requires a person to go to the hospital and connect to a machine through which the blood is purified. My dialysis took place through the peritoneum, where a catheter and a special device were installed. All that was required of me was to fill in the filter liquid four times a day. I myself wanted such dialysis, because it is easier to tolerate: this method is as close as possible to the work of the kidneys. The downside is the catheter sticking out all the time, because of which there is a risk of infection.

One evening I went to Instagram and saw the post of my old friend, with whom I did not even keep in touch. She posted a photo of a banana and wrote: “What a blessing it is to have a banana and know that you will not die.” At that moment I thought about the kidneys, because people who go to hemodialysis should not eat them due to their high potassium content. I wrote to her and found out that she had had a kidney transplant. It turned out that she had a very serious and rare disease – ANCA-associated vasculitis (a type of vasculitis, that is, immunopathological vascular inflammation. – Ed. ). She hid her illness from others for a long time, and then eventually deleted that post. 

With dialysis, I started to have problems with my joints, and at first I did not pay much attention to them: it seemed to me that nothing would happen worse than dialysis. At some point, I just stopped walking. Then I left for Moscow, where my childhood friend lives. Her sister works as a rheumatologist, and thanks to her I learned that all this time I had a different diagnosis – exactly the same as that of my friend, ANCA-associated vasculitis. This is a very rare and dangerous disease, but very few people in the regions are familiar with it – that’s why they misdiagnosed me.

After that, another difficult treatment began. I realized that my kidneys were failing due to vasculitis. The destruction of the joints is an indicator of the severity of the stage: if it is not started to be treated at this time, then a person can die in six months. All this time I lived on dialysis and was treated for vasculitis so that other organs would not refuse. I was lucky because in Moscow a doctor from a nephrological center received me without a residence permit, certificates or other papers. I was given expensive droppers for free, which in the Tula region – where I, in fact, live – simply did not exist, and for my sake they would not buy them alone.

About kidney transplant

With the start of dialysis, I realized that I was waiting for a kidney transplant. I studied the information, so I had a rough idea of ​​what it was. I was registered at the Shumakov Center (National Medical Research Center of Transplantology and Artificial Organs named after Academician V.I.Shumakov . – Ed. ). Organs are transplanted not according to the principle of sequence, but according to the principle of compatibility: you can wait a month, or you can wait ten years. I was on the waiting list for about a year, but then I was expelled from it: the doctors referred to my vasculitis, with which it is allegedly more difficult to do the operation. There were no other options for federal centers where the operation could be performed, so we decided to contact Sklifosovsky (N.V. Sklifosovsky Research Institute of Emergency Medicine . – Ed. ). They take on such cases, but only if the patients are from Moscow. My husband’s best friend helped me: he has an apartment in Moscow, where he registered me.     

I waited for my kidney for two years, and it was transplanted to me last July. In Russia, two types of surgery are possible: a transplant from a relative or from a corpse. I had no relatives who could give me their organ, so I considered only the second option. It is impossible to buy a kidney from someone, so all this black humor about “selling a kidney” is simply irrelevant. People who die of brain death can donate five organs at once: two kidneys, a heart, lungs, and a liver. In this case, the transplant should take place quickly. None of those waiting for this operation knows when he or she will be called – it can happen any day and any time. It should take no more than three hours from the call to hospitalization. I got a call at eight in the morning and immediately went to the hospital.

My kidneys were not removed. Usually, when these organs fail, they decrease greatly in size over time, posing no danger. In addition, it turns out that you need to carry out two operations instead of one. I had a kidney transplanted into the peritoneum, and my recovery process went pretty quickly: after three days I was transferred from the intensive care unit to the hospital, and a week later I was discharged. When I woke up, I only remember a bunch of equipment, wires sticking out and my husband, who was allowed into my room. After that, I fell back into sleep.

About life after transplant

After the operation, my life only changed for the better. Even on dialysis, I tried to lead an active life, not really limiting myself in anything. After the operation, I had an incredible feeling of cheerfulness, which I had never had before. I was finally able to relax, because I realized that I no longer need to rush home to do some kind of procedure. Of course, there are certain conditions that must be observed – the main thing, perhaps, is to take the pills on time. I heard and read a lot of different things on the Internet: people said that nothing can be done, that if a microbe falls on you, then you are finished. When I asked the doctors this, they answered in the same way: “You got a transplant so that you live, and not so that you suffer.”

It so happened that in my environment, the topic of the disease was not discussed by my relatives. It often happens that the parents of children with such diseases shake very strongly over them, they do not allow many things. I did not have this: we were not sad about this, no one ever felt sorry for me. Everyone treated me the same way as an ordinary person. I am grateful to them, because I have no complexes and endless fears. It’s the same with my husband. We met when I was nineteen years old, in the midst of Cushing’s syndrome. He always supported me, and our conversations about the disease were like this: “Well, if you need to go to the hospital, then you need to.” If I had some kind of diet, then we silently ate together what I needed to eat. For us it was like brushing our teeth: no one has ever made a tragedy out of it.

I cannot cure ANCA-associated vasculitis, I still need to suppress my immune system. But after the transplant, I would have to take the same medications so that the body does not perceive the kidney as a foreign body, so that it does not reject it. And this is for life.

I discussed with the doctors the topic of childbirth. Now in Russia there is one nephrologist who has been dealing with this issue for more than twenty years. She developed some schemes thanks to which many women after transplantation can give birth to children. Of course, this is harder – mainly due to immunosuppressive drugs that cannot be removed. Immunosuppressive drugs are, roughly speaking, poison for the body, and in case of pregnancy, you need to constantly monitor its level in the mother’s body. But without them, the kidney can simply fail, so pregnancy for patients after transplant operations is a balance between preserving the organ and the ability to give birth to a child.

I was lucky with my work, although, of course, in general Russia has big problems with the socialization of people with disabilities. Of course, now something is changing, but many employers often still do not want to hire people with disabilities. Before dialysis, I worked in large companies: first in petrochemical, then in gold mining. I always worked hard and was in good standing, they always met me halfway. When I was getting ready for dialysis and said that I might not be able to work, the manager said: “No problem, don’t worry. We will adjust the schedule, we can handle it. ” At the same time, all my life I dreamed of working in the beauty field. On dialysis, I worked two jobs, but at some point, as a master, I had so many clients that I had to choose. Now I have my own beauty salon.

About the community

There is a forum ” Life in spite of chronic renal failure (chronic renal failure. – Ed. )”. It was created by a doctor who used to be in charge of the hemodialysis department at the presidential clinic. At one time, it was the only platform where people with the same problem could communicate. There were also doctors who could invite to an appointment. I remember that this forum even convened conferences where all participants were paid for travel, accommodation and dialysis. I talked a lot with different people there.   

With the development of social networks, VKontakte chats appeared, where there was a younger audience. I liked to communicate with patients like me, but I realized that very few people there wanted to understand the disease, what could be done with it. Therefore, I tried to share information to prove that you can live on dialysis. I can imagine what patients in other cities hear – something like “You are not a tenant, your life is over, you are not allowed to do anything.” I know from myself that this is not so.

Then Instagram appeared. Now there are few people who talk about life with chronic renal failure, so I started posting something about the disease. It began with my confession about my illness, about what was happening to me. After that, I noticed that people from different parts of the country who just had to undergo dialysis began to subscribe to my page. Now I want to make a blog about life with chronic renal failure. People are scared, they do not understand anything, it seems to them that their life is over. I would like to show by my example that, despite the difficulties, there is an opportunity to live an ordinary life.

local_offerevent_note March 20, 2021

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