About the situation with the dialysis centers, what other complications facing kidney failure who are transplant and what she thinks about domestic medicines – the Chairman of the Board of the public organization of nephrological patients Lyudmila Kondrashova.
- Transplant and patients – the game is on an equal footing (photo + video)
- As one Christian to another gave his kidney
- Only one-third in need of transplants Russians get new bodies
- Selfie during hemodialysis
- The artificial kidney machine in the hospital bought in lieu of flowers for the Patriarch
Interregional public organization of Nephrology patients “Nefro-League” is a non – profit organization that brings together patients with kidney disease, patients on dialysis and after transplantation and their relatives.
– Lyudmila Mihajlovna, as are people on dialysis? That is, when a man says: you need dialysis is what needs to happen?
– This man just die kidneys cease to perform its cleansing and eliminative function.
– What are the reasons?
– The vast majority of renal diseases has not been elucidated etiology. They can occur suddenly, out of the blue, can take place quite hidden, that’s why the nephrologists there is a saying “the kidneys are dying silently.” And when the moment comes, that person already needs dialysis, and often he learns about it suddenly. Because some of the signs of kidney failure associated with many diseases: it is a weakness, merlefest, lack of appetite. You never know what people got! And eventually on dialysis he had to be the day before yesterday.
With the primary detection we have a very intense, she actually is still equal to zero, with rare exceptions. Because the denseness is now sitting in hospitals precinct is amazing. In particular, recently I was called a woman – she doesn’t know what to do, where to go, she has a great creatinine. Creatinine is one of the markers that shows how the kidneys are still living.
– To identify the level of creatinine requires a special blood test?
– No, this is a common biochemistry, nothing supernatural. Creatinine is at all, but in the normal range. The woman who called me, the creatinine was more than 600, and the rate in women under 100. And she said, “What do I do? Probably need a nephrologist, but I don’t know where to find him.” That is, the therapist didn’t even tell her where to go with this problem, but there is the Moscow city Nephrology center, which is absolutely none of the renal patients not failing.
– That is, from the therapist didn’t even need to write a referral?
– So the question is not worth, if we are talking about renal failure. Yes, now there is an unspoken order not to give a direction on hospitalization, just for consultation, but not to give direction to a patient whose kidneys are already not in the best condition, it is often actually to kill this man, if he doesn’t know who next to contact.
This woman by chance I went on – started to look for something on the kidney problems and came across our website and there are my coordinates. I sent her to the Moscow city Nephrology center, she then called me extremely excited about what this attitude she never saw what it was doing and promised to help.
Because the primary detection we have is almost zero, very many patients come to dialysis through the resuscitation of the feet.
– If a person goes on dialysis, he will be able to get out?
– This procedure is lifelong, it is done three times a week for 4-5 hours, the patient is actually confined to the artificial kidney. With rare exception, if acute renal failure occurred, for example, against poisoning, alcohol intoxication. In three weeks, as a rule, of course, it is acute or chronic failure. Acute kidneys gradually restore their function and the patient goes on dialysis.
The young have nothing to do on dialysis
– In chronic, accordingly, will only transplant?
– We must understand that transplantation is the prerogative of the elite. First, there is a severe shortage of donor organs, this problem exists all over the world. And the second dialysis usually come patients with a history of severe chronic diseases of perennial flow is, for example, diabetics with great experience, and sometimes with too much, patients with systemic diseases. In a winning situation are “athletes”, in the jargon of dialysis physicians are those who have only renal failure mysterious origin and with no comorbidities.
And if there are contraindications for transplantation, no one will take getting this surgery because the risks are very large. And then, many people have a false impression that a kidney transplanted and popped. This is not so. After that life taking immunosuppressive medications and hormones that prevent rejection of a transplanted organ, because the body is a foreign body, and it will all the time try to reject. To take immunosuppression, need to have some resource. It suppresses the immune system, and the person becomes vulnerable to several diseases.
Young transplant shows they have nothing to do on dialysis. We have plenty of moms who are post-transplant, created family, have given birth to healthy children, the full works. In any case, since the existence of the “Nefro-League” among those who with us began, 2/3 already transplantability. They are all in very good condition.
Personally I, for example, there are serious contraindications to transplantation. I’ll be the rest of your life chained to the artificial kidney. 14th year went, how I three times a week for five hours on dialysis. I four enough. Because normal kidneys work 24 hours a day and on dialysis people washed only 12-15 hours a week. Naturally, the accumulated poor health, complications.
– Many have to take accompanying medications?
– Yes, drugs are in any case necessary, because when the buds are killed, the person should always inject the hormone erythropoietin (EPO). This hormone is essential for the synthesis of hemoglobin.
Of EPO there are long and short. Short EPO inject three times a day, long once a week or even once a month. Economically – profitable long. But the real benefit of this no one believes. Our officials think that it is easier nothing to give, than to bother what to buy. But, unfortunately, some patients on dialysis will eventually become not sensitive to short, especially me. After some time they stopped to help me. So I just stabbed them with crazy dosages, but the hemoglobin was still very low. Then I was transferred to long EPO, and here my problem was solved. Analogues long we do not and can not be.
– Now it is whose manufacture?
Our pharmacy can not be criticized
– Now cost, the Federal law”About measures of exposure to (counter) the unfriendly actions of the United States of America and (or) other foreign countries” that drugs are not touched. What was expected?
– We would have died.
If a law was passed with the 15th item of the restrictions on the import of drugs, people would make the law of death. And those who voted – voted for murder. The murder not of one man, and thousands of thousands.
First, let’s start with the fact that our farm is about anything, it works in a strange substance, we do not have. And to speak about any quality very difficult. We received the substance from India, China and Iran that I was very surprised, there is a sufficiently developed chemical industry, it turns out. We get them here and include in our production cycle. Not only that, the quality of these substances, shall we say, rather unstable, but when you turn to another processing chain, their quality can vary.
Often even in the same party of our domestic pharmaceutical products can be difficult to find a pack with the same composition. For example, in one pill 50% of active substance, the other roughly 150%.
And all these cries about “how our farm evolved”, it’s all nonsense. Long EPO at us nobody does. Short EPO we are doing a couple of the companies about which I can say are guaranteed: Yes, that’s good. One can actually guarantee because we this drug were monitored on the diaries of the patients: as the man raised the hemoglobin, how did he feel, what was the reaction, was possible side effect. And everything else can not be criticized.
There are medications from severe complications on dialysis secondary hyperparathyroidism. In the thyroid gland there is a small parathyroid glands, they are responsible for the bone. When a person has a kidney dies, their work is disrupted, they produce too much hormone, and the bones begin to break down. First, a person becomes severely disabled, sits in a wheelchair, the bones disintegrate in front of you – the fray the spine, dissolve the bones of the face.
When I first saw a person with advanced hyperparathyroidism, I’m such a horror never seen in my life. With this woman we were in a very good relationship, she recommended a good doctor, and we met in her office. When I took a step towards her, I think with the face I can’t handle. The only thing I kept from having to recoil. It was a completely involuntary reaction, because it is only in the horror movie show, although I have many in my life seen, I am a fan since childhood. It’s very scary.
Then the person happen spontaneous fractures that do not heal, he felt the wild pain and then a heavy, painful death. Hyperparathyroidism starts even before the patient goes on dialysis, but when you already have chronic renal failure. There are three drugs which prevent development of this serious complication, and these three drugs American.
Nobody will invest in investment and promotion of the drug in Russia, because at any moment he can say: get out of here.
If you shout that the CHI is not enough money, so stop pointless to waste it on gestures, which can be avoided. My mom last year revealed diabetes mellitus type II. It is clear that diabetes is not going anywhere. Why in order to go to the endocrinologist, she needs to register to the therapist and then the therapist writes to the endocrinologist, and the endocrinologist then sends back to the therapist. That kind of nonsense? Why would we pay an extra visit to the therapist from the CHI? Us money nowhere to go? More retarded system, I don’t know.
Per month per patient – 2 thousand rubles
– We received a letter that the Ministry of health of Udmurtiya has cut funding for drug provision of patients on hemodialysis by 30%. And the head of one of private hemodialysis centers in the Udmurt Republic said: “From January 1, 2018 without any warning we stopped receiving funds from the territorial Fund of obligatory medical insurance in the provision of medicines for patients in hemodialysis”. In the Udmurt Republic’s only two state dialysis center in Izhevsk and Votkinsk. Enough?
– Of course not. Udmurtia is not alone in this matter. Exactly the same situation right now in Novosibirsk.
– What is the difference between public and private dialysis centers?
– Non-state with a much higher quality of dialysis, a completely different attitude to the patient.
– They paid?
– It is impossible, you mean! To pay 13 dialysis per month, 144 per year – who are able to pay? When the average cost of dialysis, even if we take the minimum, – 4200 rubles for one procedure.
– What about the dialysis centers?
– In 2006, with dialysis was withdrawn the status of high-tech medical care. It was removed from the Federal budget and given to the regions. After this accident began. Those regions, which were tools that could provide dialysis to their patients, taking over the costs of procedures. Other patients simply ignored, and no one is interested.
And then, finally, the dialysis gave to the MLA, and now the equipment, supplies, chemicals, which is used during the procedure, dialyzers, main blocks, providing dialysis hall overheads – all this at the expense of the investor, i.e. private owners, but the payment of the procedure produces a CHI.
From 1 January 2014 it is believed that the dialysis, we have provided in a day hospital. But it’s not. In fact, in Nephrology we have about this disorder. Because of the centers receives a license to provide outpatient dialysis, and someone gets a licence for a day hospital.
Now the situation is completely idiotic: depending on the rate of a day hospital that exists in the region, according to a complicated formula calculated with a sum that eventually should be allocated by the regional budget on medicinal maintenance of dialysis patients, dialysis only plus to rate it in fare is not included.
But the regions usually do this: take absolutely all the reduction factors and is getting very ridiculous numbers is 2 thousand rubles per patient per month. Especially when you consider that erythropoietins are worth 10 thousand, at least, the same hardware is not cheap, plus a bunch of related drugs – all this is expensive. And buy it is necessary on 2 thousand, and some even scored – 200 rubles counted.
And who opens dialysis centers?
– Largest dialysis company, often world. It’s a business. We have no clean medicine. All medicine is business.
– That is what they should receive from the state for dialysis, in principle, they have enough to exist, and support?
– If not to kill rate, then enough. Steal Omnia money is impossible, they are to cover costs, and not all current expenditures. There is a new constraint that would result in the mind to remove – private dialysis center can not buy equipment itself, because when receiving money from MHI, there is a limit on the amount. Therefore, equipment buys some company with which the centre agrees, and then he this company has equipment leases. More stupid schemes, I don’t know.
Me the situation with the cut in public-private partnership in dialysis is extremely scary. Because I remember a time when I was doing just that looking for dialysis places to dying men where there are none. We had a terrible history in 2010 in Rostov-on-don, when 11 patients simply thrown from dialysis, said: “from the first of June you have dialysis is not receive.” And it was at the end of may. That is, people were just doomed to die. Missing dialysis – is death.
– Through court managed to solve the situation?
– What court?! The courts for months, and then person a week dies. What can be the court?
– And what happened there?
– First, a huge scandal erupted in the media. We hung the first in the top of Yandex with a title “the Rostov officials want to kill 11 people”. Secondly, I just choked Rostov the Ministry of health, the Minister of health with me refused to talk flatly. I said to her Secretary: “there are two days Left. If the contract for payment of dialysis is not signed, we are going to talk in the office of the President.” The Secretary already began to stutter, “What, this is blackmail. Why are you so?” I said, “It’s not blackmail, it’s a promise.” The next day I received by Fax a confirmation that the contract is signed.
Was funny moment, when I, for example, arranged on a dialysis someone’s mother-in-law, although I this person didn’t know. And then I from them, from grateful, so to speak, recipients, dialysis services, gave two skinned rabbits from your household. Remember to hug those two rabbits in the bag. (Laughs.)
10 years ago people died without knowing the diagnosis
– How did the idea to create a “Nefro-League”? How many years have you been in this organization?
– On April 10 we were exactly 10 years. I got on dialysis in 2005 as a result of kidney disease. In five years, I suddenly, on a background of full health, got sick with rheumatoid arthritis, and during the years of treatment I drank analgesics somewhere pounds 17, with the result that I lost a kidney.
I the doctor ask: “Why is urine so bad?” He said, “Well, you have stones in the kidneys. It’s stones are moving.” And it wasn’t “rocks move” and the buds were killed in full.
In 2005 I got pressure, it was just the old New year, I already felt bad – I had a very strong weakness, I was freezing absolutely crazy. My friend of the 40-th clinical hospital said, “we Let you put in cardiology, and there shall understand.” They took tests and came running to me shouting, “You’ve got to intensive care! You have the beyond creatinine”.
I was admitted to the intensive care unit, where for three days I poured 30 liters of various liquids in Vienna in the complete absence of urine. I could not raise my head, I almost didn’t see due to swelling of the retina. But for the money I left the phone in the intensive care unit, and mom came the following text message: “lyudochka, dear, hold on, we agreed to dialysis in the top 20, on Saturday we’ll pick you up”. It was on Wednesday. I managed somehow to answer: “Take me as soon as possible”. My husband said that when he received this SMS, they both – he and my mom – realized that talking about my life.
Last Thursday, I brought a water balloon to the clinic of Nephrology they. E. M. Tareeva in an ambulance, and I made the first dialysis directly on the same day. After 6 or 8 dialysis I dare to look at yourself in the mirror. And not recognize yourself. I’ve been there for 2.5 months, until there was formed a vascular access that is necessary for the procedure of dialysis.
Over these 10 years what has changed?
– The number of dialysis patients increased. But the surplus of dialysis places now have is the result of undiagnosed primary, which could, gradually, nephroprotective, without any such incidents using CPR to bring to the dialysis at the right time. Because, unfortunately, they will sooner or later come to the dialysis. In advance to form a vascular access, give him the opportunity to quietly ripen, and not to prick for a living, when that’s the only arm was cut, sewed and immediately began stabbing because you can’t wait. If they all were initially diagnosed in time, then we would have these seats were filled. The fact that they are not filled, it is a consequence of a very poor primary detection.
Still came drugs for the treatment of severe complications. Came the traders in dialysis, which eliminated the shortage of dialysis places.
– And before that people did not know about his diagnosis and died?
– Yes. Someone, for example, in the village, well, she died, and died. We even have the world health organization classifies renal disease the fifth disease is the killer. But Nephrology has to be highlighted, because the mortality level is high enough, at least for us.
And creeps the disease most quickly. Yes, I have a lot of examples. Here was a young man, he studied at the School of militia, on the Committee, it seems to be looked checked. He went to take the test, fainted in the bus. The ambulance brought to the hospital, took the tests: the day before you’re supposed to be on dialysis!
– Kids how things are? They too can be on dialysis?
– Yes, of course. In the Republican children’s clinical hospital of their darkness. But for a child on dialysis is not the choice of therapy, the child is more complicated. The child ceases to grow, fully develop physically. I can accurately determine those who are sick from childhood, they are all very short. Children’s dialysis has its own specifics. In this case we have too little specialists, only 1800 nephrologists all over the country. And pediatric nephrologists a high level three or four.
Disunity prevents punch walls
In 2013 we were invited to join the European renal Association. But the problem is that many NGOs in Russia are poorly funded. Despite the fact that I have a very good relationship with sponsors, I can’t call our funding is huge. About 3 million rubles a year.
At the same time on the money we manage to make as much as many are dozens. It is only at the expense of my people. Because, by and large, this is not a job, it’s a mission. A for the idea vpahivat for 10 years. I only have four salaries, and for eight years I vpahivat like a horse for free. Now I have a salary of 18 thousand.
We filed four times for grants with different themes. Us all four times safely rolling, despite the fact that our projects were brand exclusive.
– You have a vision that would somehow improve the situation?
– It is necessary to understand that civil society organizations, NGOs, even very large, even all-Russian Union of patients, have a voice after all the deliberation. We are not the legislative and not the Executive branch. Yes, we as their forces try to influence the legislation that is involved in the same Council under the Ministry of health proposed the changes to the bills. But still our voice is deliberative.
When rose 323 third law (Federal law on fundamentals of protection of health of citizens of the Russian Federation No. 323-FZ dated 21.11.2011. – Ed.) we tabled 11 amendments. These 11 amendments are in a serious battle were adopted by the Ministry of health. With our amendments, the law is gone. And when he went through the Ministry of justice and the Ministry of Finance, these amendments remained 1.5.
To influence all of us can’t. To have been some radical changes that need consolidation and the power of the professional medical community, which deals with reforms. Need fighters. We are so many years because, in principle, “Nefro-League” each fighter. Because the work in the regions is very difficult. I have a very different status have emerged over the last 10 years. I know in a professional environment and take as their own, which is rare.
The disunity that exists in society, exists in the medical field, even in a community focused on one disease, there is a difference of attitudes, opinions – how to act, how not what to do, it is not necessary.
That is, no consolidation, a powerful core, which it is possible to punch the wall. It is not only Nephrology applies to absolutely all spheres of health.
According to the Register of renal replacement therapy, Russian dialysis society, on 31.12.2015 in the Russian Federation the number of patients with CKD 5 stage, receiving dialysis, reached 35 701.
- on hemodialysis – 33 365 patients
- peritoneal dialysis – 2 336 patients.
According to the state commercial enterprises of dialysis, number of renal patients on dialysis at the present time 45 000 – 48 000 people.
According to the Department of health of Moscow, in the capital at the end of 2017 was treated:
- 3628 patients using hemodialysis,
- 358 patients – method of peritoneal dialysis.
Peritoneal dialysis – artificial method of cleansing the blood of toxins, based on the filtration properties of the peritoneum of the patient.
Interviewed By Tamara Amelina