29.01.2022

Real stories of patients who received organ donor transplants

Thousands of Russians are in need of organ transplants right now. Among them are newborns and adults, people with excellent health and people with chronic diseases. Someone has a kidney failure, someone has lost a heart or liver, someone has lung problems.

But whether they will wait for a donor organ and a chance for life is a big question. Transplantations in our country are still very rare operations – about 2–2.5 thousand transplants are performed annually. And in 2020, due to the pandemic, their number decreased even more.

Residents of Russia are still wary and wary of transplantation. Relatives of people who could become donors create scandals and prohibit organ harvesting. Although Russian laws allow the removal of organs after the death of a person. But the lack of information, illiteracy in transplantation issues and fear turn out to be stronger than the desire and ability to save someone else’s life.

How is organ transplantation arranged? Will they be able to harvest your organs during your lifetime? And after death? How do people get on the waiting list? And why can the vital organs fail in a seemingly healthy person? Why does the system work the way it does, what can change the new law, and why hasn’t it been adopted yet? Today we will answer these questions and tell you the real stories of people.

How transplantation works: where are the hospitals and what is the waiting list

There are transplant centers only in 32 out of 85 regions of Russia. In total, operations are carried out in 54 hospitals. Medical institutions that provide transplantation do not remove organs themselves. Donors appear in hospitals that help people in emergencies. They treat those who are involved in road accidents or other disasters. It often happens that due to trauma, the human brain has already died, but other organs are intact. Only in this case it is possible to withdraw them for donors. The procedure is very difficult, both technically and legally. Several doctors must confirm that the brain is dead (in this case, the person cannot be saved, he is legally considered dead), and the state of the other organs is also checked. But as soon as all the necessary is done, the transplant center begins to prepare the patient from the waiting list for the transplant.

– The work of the fence group is very important. A kidney that is not working can be removed and a new one can be transplanted, and if the heart does not work, then everything ends sadly, which is why doctors are always very careful about the selection of donor organs, ” says Dmitry Doronin, cardiologist at the Meshalkin Clinic, Candidate of Medical Sciences.

A waiting list is a list of patients who need a transplant. The doctor includes the patient there after it has been established that only such an operation can help. There is no single federal waiting list in Russia. Each hospital has its own. And this is also a problem.

– We do not see any registers that would show the fairness and transparency of the organ distribution system. We are simply told about it that it is fair and honest. We cannot prove or disprove this in any way. Moreover, in Russia there is no unified transplant registry that would show the approximate waiting time in a particular center, to whom and how organs are allocated, and what is the survival rate. We do not know anything about it. All we can is to hope that we are lucky, – explains the social activist Marina Desyatskaya.

Marina Desyatskaya fought for the team of the renowned transplantologist Mikhail Kaabak, who transplants kidneys for children with very low weight. She organized the Temida patient community, which achieved the reinstatement of a unique specialist, who was later fired again. Now the social activist is again seeking its restoration.

In a situation with transplantation, the question always arises – who and how determines to whom the donor organ will be donated? This is always decided by a council of doctors, and in Moscow a special program helps in the selection.

At the time of publication, only in the Novosibirsk region 90 people were waiting for a kidney transplant, 44 people were waiting for a liver transplant, and about 40 people were waiting for a heart.

– A lot of factors are taken into account – from the group compatibility of the organ and the potential recipient by blood to the urgency of the situation. The organ will be received by the one who needs it most, – explains Sergei Gautier, director of the National Medical Research Center of Transplantology and Artificial Organs named after Academician V.I. Shumakova, chief freelance transplant specialist of the Russian Ministry of Health. – People think that you can give money in order to rise higher in the waiting list, but this is not so. Several years ago there were very unpleasant events in Germany in connection with such corrupt actions. There are a lot of doctors and medical staff who suffered because of this, there were even prison terms. In our long history, such things have not happened, thank God.

The incident in question happened in 2013. In one of the Leipzig clinics, a scandal erupted over a scam with a queue for a liver transplant. According to the BBC, 38 patients with liver disease were deliberately listed as patients requiring dialysis, that is, had kidney problems, which is a contraindication for transplants – this reduced their waiting list for transplants.

Sergey Vladimirovich Gauthier – Director of the National Medical Research Center of Transplantology and Artificial Organs named after Academician V.I. Shumakova, Chief Freelance Transplant Specialist of the Russian Ministry of Health, Head of the Department of Transplantology and Artificial Organs, I.M. Sechenov. Doctor of Medical Sciences, Professor, Chairman of the All-Russian Public Organization “Russian Transplant Society”, Academician of the Russian Academy of Sciences, Honored Doctor of the Russian Federation.

How much is a person worth?

Anyone in a critical situation will look for a way out, so grief and despair are an excellent field for fraudsters, manipulation and corruption. By law, human organs are priceless. But the reality is different from what is written on paper. Chile, Ecuador, China, Nepal and even Germany got into scandalous reports and investigations with the sale and purchase of organs. From time to time, the merchants themselves reveal their cards and say how much they are willing to pay for this or that organ.

In 2020, an entire village was discovered in Nepal where people were selling their kidneys for money. The RT TV channel found out that the intermediaries promised people who live in poverty huge money by local standards – from $ 500 to $ 3,000 – and assured that the remote organ would “grow back.” According to the website of the Global Slavery Index, about half of all crimes related to the oppression of people on the planet, including the trafficking of their organs, are recorded in India, China, Pakistan, Bangladesh and Uzbekistan.

The most expensive organs are those without which human life is impossible. These are the heart, liver and lungs. In the case of the heart, the operation itself costs incredible money – it is very complex in technical terms. The liver can be transplanted partially, and it will be much cheaper.

All these operations are performed much less frequently than kidney transplants. This is the most demanded organ, without which you can live, but with great restrictions. The pancreas is also a very popular organ, but the success of its transplant is still being evaluated by specialists. The same cannot be said about the cornea. Although this is not a vital transplant, its demand is very high, since it returns a person’s vision.

In Russia, there is criminal liability for the purchase and sale of organs – this is part 2 of clause “g” of Article 127.1 of the Criminal Code of the Russian Federation “Trafficking in Human Beings” and part 1 of Article 120 “Compulsion to remove human organs or tissues for transplantation.”

– Trafficking in persons is punishable by imprisonment for a term of 3 to 10 years. Coercion to the removal of human organs or tissues for transplantation also provides for criminal liability – up to 4 years in prison, the Investigative Committee of the Novosibirsk Region explains.

Advertisements for the sale and purchase of organs are now easily found on the Internet. There are thousands of them. People in despair are ready to give up their last, just to get a chance at life. Doctors also receive such interesting proposals.

“We have encountered similar calls from people about buying and selling organs,” says Ivan Porshennikov, head of the organ transplant department at the Novosibirsk Regional Clinical Hospital. – They ask if we are ready to buy an organ from them and so on. We treat this as spam from all sorts of different microfinance organizations that regularly come to the phones of all citizens of our Russian Federation.

Ivan Anatolyevich Porshennikov – Head of the Department of Organ Transplantation at the Novosibirsk Regional Clinical Hospital, Head of the Center for Liver Transplantation and Surgery, Surgeon. Candidate of Medical Sciences, Associate Professor of the Department of Hospital and Pediatric Surgery, Faculty of Medicine, NSMU.

Sergei Gaultier shares a story about how he and his colleagues once tried to “buy an organ” using one of the ads.

– It is important for them to pull a person into a certain chain of actions. And at the very first stage, it includes the payment of some amount for the tests, which must be done in order to become a paid donor. As soon as this amount is deposited through a bank or some other resources, the chain is immediately terminated. Most often, this is done by people in places not so remote. We even conducted such an experiment on our own employee who joined this system. He deposited two thousand rubles into an ATM. And that’s all, – says the doctor. – Yes, scammers play on people’s feelings, and they need to be pressured for it.

Many people ask their doctors directly – how much will this or that organ cost.

– In the organ donation memorandum, there is no question of payment at all. Organ donation can only be free of charge. Even operations that are performed abroad and cost some money, then this is a fee for the operation itself, and not for the organ. Yes, many are willing to pay, and many patients say: “Tell me how much it costs. We are ready to pay. ” And who to pay? By law, the body of a deceased person belongs to the state, and not to relatives, – explains Alexander Chernyavsky, chief freelance transplant specialist of the Siberian Federal District, director of the clinic named after Academician Meshalkin.

Alexander Mikhailovich Chernyavsky – Doctor of Medical Sciences, Chief Freelance Transplant Specialist of the Siberian Federal District, Director of the Clinic named after Academician Meshalkin, Professor, Honored Scientist of the Russian Federation.

Why is transplantation so developed in the USA?

In Russia, about 2–2.5 thousand transplants are performed per year, but in 2020, due to the pandemic, less than 2 thousand organ transplants were performed in the country. Most of the transplants performed are kidney, liver and heart. There are several dozen pancreas and lung transplants. For comparison: in the United States – in a country that is at the forefront in terms of transplantation – over 39 thousand operations were performed last year.

Experts explain such high rates of transplants in the United States by the well-organized operation of the system. The need to sign a consent for organ harvesting after death, the so-called donor card, is said from each iron. Powerful propaganda, including from religious organizations, and high trust in medicine made transplantation a widespread practice in America.

– Transplantation is well developed in those countries where not only political power, but also the church is on the side of doctors. I remember when we walked around Houston on Saturday, then in their churches, in each of them, either on Saturday or Sunday mass, one of the questions was devoted to transplantation. It is written: “Is it necessary to take your organs with you to God”, “God needs your souls, but your organs are not needed.” Our Orthodox Church also has its own position, but it supports the expression of the will of a person, – says Alexander Chernyavsky, chief freelance transplant specialist of the Siberian Federal District, director of the clinic named after Academician Meshalkin.

The image of black transplant doctors is now firmly rooted in Russian society.

– We do not have black transplant specialists, and there are not enough white ones. There are dozens of times less specialists in the field of transplantation than therapists, surgeons, and resuscitators. There are simply not many of them, because we have thousands of centers that perform cardiac surgery and dozens of transplant centers. These are incomparable numbers, explains Sergei Gauthier. – All the talk about black transplantation came from the OBS agency – one woman said. And it spreads through the media and through feature films. We are doing a lot to make it clear: any violations of the regulations for the removal and distribution of organs and, God forbid, the participation of foreign patients in whom these organs are supposedly transplanted, immediately become the subject of discussion abroad.

The World Transplant Organization is watching the statistics very closely. And if a patient appears in a certain country, to whom something has been transplanted, but not on the territory of this country, then questions immediately arise. Experts are confident that the lack of educational activities about transplantation leads to such low public confidence.

– Citizens do not have a very good opinion about this type of activity. Many people believe that we have black transplantologists, that they will not provide medical assistance on purpose in order to remove organs later. Of course, this is probably more connected with the general situation in healthcare. There is now a large chasm between patients and healthcare professionals. And for some reason the state does not go to the settlement of these relations. It is necessary to convey to people that patients and doctors are one mechanism, that they must work in one harmonious system. And not as it happens now, – says Yulia Kazantseva, a medical lawyer.

Can organs be harvested after death? And if your family is against it?

All myths and fears about transplantation are somehow connected with the presumption of consent. If you have not stated in writing that you do not agree with the removal of your organs after death, then you automatically agree to be donors. This is called the presumption of consent. It is used in many countries of the world – in addition to Russia, these are Spain, Portugal, Austria. In Russia, it is enshrined in Article 8 of the Law on Transplantation. There are indicated cases when transplantation is impossible: for this, a person must sign a refusal during his lifetime.

– Presumption of consent is a preliminary agreement with the society that it is responsible for the health and life of its members. I see no reason that would force a person to refuse posthumous donation during his lifetime, except for some very internal things that I cannot understand in people. The presumption of consent is a very convenient, humane way to protect a person from a wrong decision that will lead to the death and failure to provide assistance to several people. And they didn’t do anything bad to this person during his lifetime, ”says Sergei Gauthier, director of the National Medical Research Center for Transplantology and Artificial Organs named after Academician Shumakov, chief freelance transplant specialist of the Ministry of Health of the Russian Federation.

The doctor is sure that questions to relatives, whether it is possible to remove an organ from a deceased person, are unnecessary and even cruel.

– We thus provoke them to an inadequate reaction, because at such a moment a person has no time for us. And we should not ask his opinion about the withdrawal, but whether the deceased expressed any controversy about posthumous donation. Most likely, he did not. A relative can give their understanding of the situation under stress. And this is followed by the non-removal of organs and the failure to provide assistance to people who need it. The presumption of consent excludes this, says Sergei Gauthier. “At the same time, it provides for the possibility of an intravital refusal of organ harvesting.

Another organ harvesting system works, for example, in the United States and Germany. A person must sign a document during his lifetime that he wants to be a donor. If there is no paper, there is no transfer.

– This is a model of the requested consent – that is, a priori disagreement. The most indicative is the situation in the United States. There, of course, the expression of the will of a person must be with him in the documents. For example, in a driver’s license. How to relate to this is a difficult question, – says Alexander Bykov, chief transplantologist of the Novosibirsk region. – If we now accept such a model, then, probably, for a long time transplantation will become even less accessible to people.

Why is the church against the presumption of consent

The Russian Orthodox Church opposes the presumption of consent, which operates in Russia. The priests are convinced that donating an organ to another person can only be voluntary, and compare the current system to theft.

– The main thing that the Church testifies is that any deed that a person should and is called to do in relation to another, helping and supporting him, makes sense if it is connected with the expression of free love, free sacrifice for this person. This principle is also applicable to the problem of posthumous organ transplantation, – explains Vakhtang Kipshidze, chairman of the synodal department of the Moscow Patriarchate for the relationship of the Church with society and the media. – If a person has decided that after his death some parts of his body can be used to save another person, then we consider this an expression of sacrificial love. We regard organ donation after death as a very righteous practice. And not only the Russian Orthodox Church, but also other Christian churches have a similar attitude to the potential for human organ transplantation.

At the same time, the ROC regards the presumption of consent as a completely unacceptable system.

– If we proceed from the fact that each person agrees in advance that his body will be used, and there is no need to ask his consent or the consent of his relatives, then in this case, in our opinion, the person’s free expression of his love is devalued. The fact is that love and sacrifice make sense only when they are carried out voluntarily, the Russian Orthodox Church is sure.

Why is there not enough donors in Russia?

And even with the current presumption of consent, Russia is sorely lacking donors. Waiting for a kidney can take many years. On an artificial heart, which is suitable only for a few, a person can hold out for a year, two or even three. And severe complications result in high mortality. At the same time, lung and pancreas transplants are still very rare operations. But one donor can save at least eight lives.

– We have only 32 regions engaged in transplantation, and now we are working hard to increase their number. We go to the regions, talk to hospitals, administrations. We say that the organ resource is disappearing – people are waiting for these organs. We cannot talk about the deficit as such. It is correct to say that there is no administrative resource for organizing donor programs, – says Sergei Gauthier, director of the National Medical Research Center of Transplantology and Artificial Organs.

There is no responsibility for the hospitals in which donors appear. No one will incur any punishment if a person did not become a donor, although he could become one.

– Transplantologists are people who would like to have this resource to save the population. But we cannot organize this process. It is the responsibility of the chief doctors of hospitals where the death of certain patients is ascertained. This mechanism works with great difficulty, says the doctor.

His colleague Alexander Chernyavsky is convinced that the reason lies in the fact that such hospitals have no interest in the development of donation.

– There are laws, the position is accepted. But their failure to comply is not punishable by anything, no one is responsible for this – for the fact that we do not have enough donor organs, – Alexander Chernyavsky is unhappy. – We calculated how many potential donors there can be in Novosibirsk, for example. There are certain formulas that are known all over the world and are used to calculate. And we have about 50 to 70 real donors in Novosibirsk a year. I think in this case, we could generally solve the problems of caring for patients with kidney failure. That’s about 140 kidney transplants a year.

If we consider this issue only from a financial point of view, the experts are convinced that organ transplantation is much more profitable for the state than the same dialysis on which patients with renal failure should be.

– If our donor bases worked effectively and efficiently enough, we could refuse dialysis altogether. We think only about the immediate costs, and when we look at what this patient needs to do dialysis for 10-15 years, we understand that these are huge sums. They add up to billions of rubles. A patient who receives a kidney transplant is several times cheaper for the state. And this has been counted for a long time. We don’t know how to count money at all.

Child transplantation and underage donors

The most difficult issue of transplantation in Russia is child donation. By law, it is allowed with parental consent, but so far there has not been a single minor donor in our country. If a child needs a liver or kidney, doctors can transplant them from an adult donor and even from relatives. But in the case of a heart transplant, everything is much more complicated. The child must grow up to the point where he can be rescued with the help of an adult organ. And this is about 12-14 years old and older.

– In heart transplantation, we are highly dependent on anthropometric parameters. If we have a teenager weighing more than 30 kilograms, this usually allows us to place the heart of an adult deceased in the chest and resolve the issue, ”says Sergei Gauthier, chief freelance transplant specialist of the Ministry of Health of the Russian Federation. – But if we are talking about a small child, then here we are simply powerless. Despite the fact that everything is spelled out in the law and there is an order from the Ministry of Health, we are absolutely blocked by the actions of children’s resuscitators. Many parents understand the need for organ harvesting. You can talk about it with them. But children’s resuscitators are mentally frustrated about this. They cannot cross the threshold of determining the death of a child for subsequent donation.

Taking an organ or part of it from relatives, although it saves lives, can be dangerous for the donor himself. He will have to live without one kidney or part of the liver. According to doctors, such operations cannot pass without a trace. That is why experts insist on the development of posthumous donation.

– The biggest plus of related transplantation is the independence of this procedure from the presence of an organ of a person who has died. This operation can be planned and carried out in a specific time frame. This is the biggest plus, – explains Ivan Porshennikov, head of the organ transplant department at the Novosibirsk Regional Clinical Hospital. – The biggest disadvantage is that a living, healthy innocent person can die during the removal of a fragment of an organ from him. The risks of this event are extremely low, but nevertheless, this happened in world practice. These are statistics, and you can’t get away from them. The most correct way in transplantation is the development of organ donation rather than related transplants.

Is there a chance for change? What will change the new law

The current transplant law was passed almost 30 years ago. And there are many gaps in it, which, among other things, set people up against transplantation. The new law should create a single waiting list across the country, as well as a register of refusals and consent to posthumous donation. This should make the system more transparent – for both patients and doctors. And also the law should completely exclude situations when the body was taken after the death of a person who did not want it.

Also, the document determines the time during which the relatives must make a decision – to allow transplantation or not. A whole chapter is devoted to posthumous donation – No. 3. Article 14 says that relatives can declare that they do not agree with the removal of organs from the deceased. They are given two hours for this, and with such a statement, the body will not be touched.

At the same time, to resolve disputes on this issue, when a person agreed to donation while still alive, and relatives opposed, a separate article No. 15 was spelled out. Since the patient himself gave such consent during life, the opinion of a relative will not be taken into account. The organ will be taken. And vice versa.

The new law sets out in detail the mechanism of child donation. Doctors will need to get the consent of one of the parents. Moreover, if the opinion of mom and dad disagrees, then the transplant will be impossible. It is also forbidden if the potential donor is an orphan. The new law has been discussed for more than five years. But it has not yet been adopted.

– The new law, if adopted, will contain elements of control over all components of transplantation. We are talking about the inclusion of waiting lists in such a control system and what we constantly talk about – the register of expressions of will in vivo. In fact, we need a register of refusals, – explains Sergei Gauthier.

No matter how many problems there are in transplantation, doctors in Russia save hundreds of lives. In anticipation of the new law, they are trying to convince people that transplant for many is the only chance at life.

– They often say that, they say, it’s terrible that people hope for the best and wait for someone’s death. Of course it is not. They don’t expect any death. They are waiting for the opportunity that they can be helped. It is impossible for such expectations to influence the mortality of other people. We can all find ourselves in a situation where we are alive and well today, and tomorrow we suddenly need a transplant, God forbid. Therefore, you need to respect each other and try to help each other, – says Alexander Bykov, the chief transplantologist of the Novosibirsk region.

Three more important texts on organ transplantation

Almost 500 people with transplanted organs now live in the Novosibirsk region. We talked with three Siberians and learned how the worldview changes after walking along the very edge, is it hard to drink pills in handfuls and what they believe in.

In March, the NHS described how, thanks to one donor, four people got a chance for a new life. The child got a part of the liver, the man got the heart, and the elderly got the cornea and the ability to see. At the Novosibirsk Regional Hospital, the patients got to know each other, thanked the doctors and told their difficult stories.

In early August, a resident of Novosibirsk, Tatyana Mankova, went to one party, after which she felt unwell. The last thing she remembers is how she got to the infectious diseases hospital. The next memory is how she woke up in the Meshalkin clinic and heard from the doctors that she had a heart transplant. Tatiana was shocked and could not believe it. Then she found out that she had miraculously survived. We talked with her about what it was like to accept a “foreign” heart, what difficulties she is now facing and how her attitude towards life has changed.

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