“Without dialysis, a person dies of intoxication”: How I live with kidney failure 

KIDNEY HEALTH IS NOT SPEAKED ABOUT KIDNEY HEALTH , and their diseases may not manifest themselves until a certain stage. Nevertheless, if insufficiency develops, that is, the organs do not cope with their task, the person finds himself in a very dangerous situation: the body does not have time to cleanse itself and intoxication can quickly lead to death.

For people with severe renal failure, two treatment options are available: kidney transplantation and dialysis, that is, the purification of the blood with a special apparatus. Transplant opportunities are limited by the lack of donor kidneys – which is why people live on dialysis for years. We talked with L. about what life is like on dialysis and why you shouldn’t give up even in the most dramatic situations.

Oya story with kidney problems began in early childhood, in circumstances that no one remembers for sure. It seems that I had some kind of complicated poisoning, pulmonary edema, resuscitation and two days in a coma. They saved my life, but I became a patient of nephrologists forever.

My diagnosis then was quite abstract – nephritis, that is, inflammation of the kidney. As a child, I poorly understood why my mother “tortures” me with diets, frequent tests, why I have a group of exercise therapy in physical education. Mom always told me about my peculiarities, about what happened in childhood, but I did not attach any importance to this, since I did not see any real manifestations of the disease. Childhood and adolescence were carefree, like everyone else. By the age of eighteen, during the next standard tests, an increased level of creatinine was found in the blood, and this alerted the doctors. I underwent a full examination at the Clinic of Nephrology, Internal and Occupational Diseases named after E.M. Tareev was with Professor Shilov, and after a couple of weeks I was diagnosed with chronic tubulointerstitial nephritis. In the kidneys there are glomeruli made of thin tubules – and with this disease, their work is disrupted.

I must say that with all today’s promotion of a healthy lifestyle, kidneys are not at all talked about. The kidneys are an organ that removes food breakdown products and various chemical reactions from the body. They cleanse the blood from such decay products as creatinine and urea, normalize the content of trace elements (potassium, phosphorus, calcium), allowing them to maintain their balance and remove excess in the urine. The kidneys do their job thanks to the glomerular tubules, in which the blood is filtered. With kidney disease, these tubules suffer – and the worst thing is that they do not recover. They don’t grow like nails or hair; if they die off , then for good. As a result, the body is not sufficiently cleansed and its intoxication with food decay products, muscle tissue (it is destroyed during exertion) and other things develops.

The degree of impairment is determined by the indicator of the glomerular filtration rate (GFR), that is, how the renal tubules work. The causes of kidney disease are completely different: high blood pressure, genetic diseases such as polycystic kidney disease, severe alcohol and food poisoning when the kidneys cannot cope with a large amount of toxins, various infections, side effects of drugs such as diuretics or blood pressure lowering drugs. My illness has mixed causes, and it was difficult to establish a specific one – but I was glad that I was diagnosed and prescribed medications.

Nevertheless, I did not see any manifestations of the disease at this stage, and I remembered it only once every few months, when my mother forced me to undergo tests for control and go to a nephrologist for a consultation. I lived a full life – I was actively involved in sports, ran ten kilometers a day, drank with friends, was fond of different dietary regimes – and my body did not give me any signs. Kidney disease is a very quiet disease that manifests itself when things have gone far.

At that time, I made many mistakes: the fact is that in order to inhibit kidney disease, it is very important to follow a low protein diet so as not to burden the kidneys (which is why the Ducan diet is dangerous). It is important to avoid strenuous exercise that raises blood creatinine levels, monitor blood pressure, and eat less salt. In my case, I also had to take blood thinning drugs – I also have thrombophilia, that is, a tendency to blood thickening. True, it is not a fact that dieting would have helped me to delay dialysis: my kidney failure had lasted twenty-seven years before it – and this is a very long time.

I realized the seriousness of the situation late, eight years after the diagnosis, when I already had the fourth stage of chronic kidney disease (there are five of them, and the fifth stage is terminal, when the kidneys simply do not work). Then I began to fanatically fight for what was left: I followed a protein-free diet, watched for edema, took care of myself as best I could. Then I found out what happens to a person when his kidneys fail – dialysis appears in his life or, if he’s lucky to find a transplant on time, a kidney transplant.

With regard to transplantation, in our country, a relative (from a close relative, and a husband or wife is not considered to be one) or corpse organ transplant is allowed in our country. This area is clearly regulated by law, and transplants for money or even volunteering are prohibited by law. With related transplants, everything is quite clear: the donor and recipient are examined in detail, a transplant verdict is issued, and in case of a positive decision, a double operation is performed – one kidney is taken from the donor and implanted to the recipient.

With cadaveric transplants, everything is somewhat more complicated – if I’m not mistaken, we have one waiting list for the whole country. I live in Moscow, and now they are put on a waiting list in two clinics, but this is the same list. Many people mistakenly call it a queue, but it is not: the sequence of transplants depends on the receipt of suitable organs. Every month I bring a test tube of blood to the tissue bank of the Sklifosovsky Institute; within a month it is compared with all incoming cadaveric kidneys for compatibility. Therefore, some may be “lucky” in three months, while others wait several years.

If it was not possible to make a transplant on time (and it is possible very rarely, because a suitable kidney still needs to be found), then when the kidneys begin to completely fail, dialysis is performed. This is a procedure that mimics the work of the kidneys, that is, it cleans the blood from decay products and removes excess fluid. Dialysis is of two types: hemodialysis and peritoneal dialysis. In the case of hemodialysis, cleansing is performed by a dialysis machine, which draws blood, purifies it and returns it back – usually this procedure lasts four to five hours, and it is performed three times a week in a special dialysis center. To purify blood efficiently, the speed must be quite high, and you cannot simply insert thick dialysis needles into a vein and thin-walled artery. Therefore, a so-called vascular access is formed on the hand – the vessels are sutured, forming an intense blood flow; this is called a fistula. The preparation of the fistula itself is a whole operation; then you need to train the hand with an expander in order to strengthen the walls of the formed vessel, but at the same time it is impossible to load too much.

When it turned out that I had the fourth stage of renal failure, I began to prepare for the coming of the fifth – and I would need dialysis. I knew by heart all the symptoms of kidney failure and constantly looked for them in myself: edema, a strange taste in the mouth, a change in skin odor, weakness, dizziness, anemia, nausea, lack of appetite, weight gain due to internal edema. Nothing hurt me, but I was scared: the ring on my finger presses a little – is it really edema? I asked my loved ones if my breath smelled, and in general I drove myself incredibly; all the time it seemed to me that tomorrow I would be on dialysis.

Two things helped to balance my psychological state: working with a psychologist and getting the most detailed information about dialysis and people who have already gone through it. Classes with a psychologist helped to distract from heavy thoughts and begin to assess their prospects soberly, without unnecessary drama. In terms of information, the forum of Dr. Denisov became a discovery for me . This is the place where people with kidney disease can talk to each other and ask any medical or psychological questions. I am very grateful to Dr. Denisov for this forum – this is a support group and a storehouse of information for anyone with kidney failure.

Unfortunately, kidney disease does not develop linearly: against the background of relative stability, a sharp deterioration can occur. Thanks to the information from the forum, I realized that I need to form vascular access in advance – otherwise you may find yourself in a situation where there is no access and dialysis is carried out for a long time through a subclavian catheter that goes directly to the heart vessels – this method is used, but ideally it is short-term. I plucked up courage, went to the vascular surgeon, and I had a fistula. Although the indicators still allowed me to live without dialysis, I was assigned to a dialysis station – they are in government institutions and commercial (but subsidized by the government). Any citizen of the Russian Federation has the right to such therapy at the expense of the state; in addition, a person on dialysis can receive the first group of disabilities, most often indefinitely. Free dialysis can be taken (by prior arrangement) in any city in the country, and this allows you to travel around.

local_offerevent_note June 30, 2021

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