Hello UkrainianTracksuit!

[CatonTheRoof]

Hello,  I noticed you posted a reply to one of my messages.      I wanted to ask you, how's renal healthcare and renal disease in the Ukraine in general?

I ask because my renal problems date back when I was living in another slavic country (Czech Republic)     somehow, in the beginning of my 20's  (2 years and a half ago) near the end of winter I got sick with no apparent reason or cause.

I love slavic cultures   specially the folk          I wish you a speedy recovery (no matter the way)  and cool to meet you!

[UkrainianTracksuit]

I must say it was surprising to see a post addressed to me.  Hello and nice to "meet" you too.  I am glad you admire rich and varied Slavic culture.  If you have questions or want recipes, let me know! (Haha..)  It really stinks that your kidneys failed in the Czech Republic but at least you got to live in a beautiful country.  Did you happen to drink any moonshine or use any street drugs?  I know those are common in CZE and have done harm to young people's organs.  Czech health care is pretty good so you would've been in good hands.      

Well, I don't really know much about Ukraine's situation per say.  I know much more about Russia because that's my place of birth and home for 23 years.  I keep up to date with "kidney news" because I want to return home in the future.  *crosses fingers* 

About my name.... I have some explaining to do.
(My mother is Ukrainian so when all the "Russia" tracksuits were sold out for London 2012 Olympics, she bought me a blue/yellow Ukraine one.  My friends all laughed.  That's how I got the name and it's stuck since then.) 

Anyways, situations between the countries are close enough that I can answer.  I'll go back and forth between Russia and Ukraine to answer your question.  First, I'll start with two news stories so people don't think I'm blowing hot air.   

This story is from the Kyiv Post from December 2012.

UAH 120 ths needed to provide one Ukrainian with dialysis

Only one out of four Ukrainians suffering renal insufficiency has a chance to get dialysis treatment, others die, director of the Kyiv city clinical hospital Borys Todurov told a roundtable "Development and reformation of transplantation service of Ukraine".

"These are not older people, but young boys and girls, often small children. A person on dialysis treatment cannot live and work normally," he noted.

The doctor also reported that UAH 120 thousand are needed to provide only one Ukrainian with dialysis. "I want to remind you that these people, who become disabled, receive money from the state budget, formed on the taxes we pay," the specialist said.

He also underlined that after kidney transplantation the person becomes able to work again and can live for another 10-15 years. In the first years after the operation, the recovery treatment costs about 60 thousand hryvnias.

(I converted 120, 000 UAH = 14, 600 USD to better understand.) 

A bit of an older story from May 2010 from Russia Today.  It may be from 2010 but for the most part, you can see just how things are screwed up so recently.

Hemodialysis as a last hope for life

There are growing calls across Russia's healthcare system for the government to provide proper treatment for people suffering from kidney failure as patients across the country are often getting bad medical care or none.

Those who suffer kidney failure are unable to remove waste products and water from their blood without the special treatment, hemodialysis, and eventually they die.

Dialysis centers are in extremely short supply throughout Russia and many regions simply cannot afford the expensive lifesaving equipment, which means that an alarmingly high number of people die before ever receiving the vital treatment.

The problem was made worse after the Ministry of Healthcare issued an order in 2006 placing dialysis treatment under “specialized medical care,” meaning that the treatment had to be paid for out of regional rather then federal budgets. While richer regions could afford proper care, poorer areas were forced to cut facilities.

Yevgeny Ustupkin had to travel across Russia from Vladivostok to Moscow in order to receive the dialysis treatment he so urgently needed.

“It’s next to impossible to have dialysis treatment in Vladivostok; there is only one dialysis center in a hospital with 1,000 beds,” said the patient. “It puts doctors in such a position that they act like God and take decisions whether this patient will get dialysis treatment and live and the other will not.”

“There is no access to basic medications, doctors will not even tell you they exist because you cannot get it for free and few people have the means to pay for it,” he added.

Very often those who do survive receive so called “low-quality” dialysis treatment.

“A high-quality dialysis treatment has many components. First, a very pure water has to be used. 99% of our centers use water of terrible, unacceptable quality, absolutely unfit for a normal dialysis treatment,” revealed Lyudmila Kondrashova, Chairman of the Public Organization of Nephrological Patients. “And we need good specialists – unfortunately, we have only a handful of them who are competent. It is also about the quality of equipment.”

Lydmila receives many letters from patients who have shocking experiences to share.

“I’m 21 years old and I’m 156th in line for dialysis treatment. I’m not even sure I’ll live that long,” a patient from the city of Ryazan wrote her.

“The solution for dialysis was prepared in a square tank made from welded steel (they use similar tanks to water gardens in dachas),” wrote another patient from the city of Ulan-Ude. “This tank was placed in a checkroom, where there were hangers for overcoats. It was covered with boards. I saw myself that people dropped gloves or hats into it by accident.”

“It might sound like a horror film, but this is the reality in many of our regions,” Kondrashova said.

With hospitals under equipped and vastly under funded, dialysis treatment ends up becoming a game of chance. The Ministry of Health replied that the availability of dialysis procedures is within the jurisdiction of regional healthcare structures.

“Those people who have no connections or money to get treatment or go to Moscow, they stay and die. And it’s a long and painful death,” Ustupkin said.

Activists are calling for the government to put in place a nationwide program backed by the state which with proper financing could put an end to an existing system.

So, I'm not going to say that it is the best in the world because it isn't.  Americans, Canadians and our friends in western Europe have more positive aspects to their care.  There is still the issue of hemodialysis being unavailable for some people.  There are long waiting lists to get into in center hemo so, therefore, not everyone does manage to get on.  However, new centers are being built to accomodate the large numbers of people waiting for dialysis.  It helps but we need many more.  In major cities, the quality of care depends where you dialyze.  (Regional hospital vs private clinic) Naturally, you hear horror stories of what what passes as "medical care" in villages.  There's also an issue of who will pay for treatment: the district or federal money.  Not all districts are wealthy so they make do with old and simple equipment.  For the most part, we're catered to by the big firms like Fresenius and Baxter.  They have many centers and see "the east", primarily Russia, as a great place for expansion.  Many people need dialysis, many will need it in the future and in some cases, an untapped market.  (Forget about Moscow and Saint Petersburg, we're talking places like Ufa, Novosibirsk or Krasnodar.)  Speaking of Krasnodar, Fresenius opened the largest dialysis clinic in Europe there.  However, since they are corporate minded, if a center isn't making money, it will be on the chopping block.  This was the case in Cherkasy, Ukraine in March of this year.  Since there were issues with funding and debt, the clinic was to be shut down.  The affected patients threw together a protest.  There is a link and videos to this story if you're interested.  (Call me dumb but I saw the rule of no link posting.  I probably didn't understand it so that's why I don't post links!  If I can, I am sorry.) 

In villages and remote areas, PD is being pushed as the better option.  Since the main concern is delivery of supplies rather than making the trek to in center care 3x a week, the logistics of a "lump sum" delivery works out better.  However, there needs to be more education about this and definitely a stable supply chain of PD supplies.  Sometimes, just getting supplies in can be a hassle.  Also, village life isn't the most sterile so lots of education about possible infections would help too.

On the positive side, we have nephrology conferences and some well qualified doctors.  There are some patient organizations to educate patients.  If you look around, there are patient support groups like this one too.  Patients need more education and educational materials like renal patients in the USA or Canada.  So besides education, the main problems are the lack of facilities and funding. 

Now, all of this was about dialysis.  I guess I should talk about renal disease.  This is probably just my perception from my own life experiences, seeing fellow patients in clinics and poking around online groups but I do see a lot more younger people with kidney disease/on dialysis in Ukraine and Russia.  I was told once by someone (here in Canada) bluntly the reason for that is because "old people don't receive care over there".  That isn't the case.  By young, I mean teens, twenties and early 30s.  Like any place on earth, we have our cases of FSGS, PKD and other diseases that cause early kidney failure.  On the other hand, in youth, Type 1 diabetes rates are on the rise and that in turn is sending more young folks onto dialysis.  A lot of Type 2 (and I imagine some cases of Type 1) go undiagnosed for awhile so health officials are expecting this kind of kidney disease to also increase and in turn, putting more stress on the system.  Yes, we are hard drinkers, love to smoke, have problems with obesity and our diet is full of salt (cured meats or you name it, we pickle it!) so we have the issue of hypertension causing kidney disease too.

We're just like everybody else when it comes to kidney disease.  We have those that believe in being proactive and staying positive.  They continue to work, have a social life and a family.  And then, we have those that are weary and tired of everything.  The average income for the average person (even the average disability cheque) is a lot less than in USA or western Europe.  So, kidney disease and not being able to work is such a huge burden on people.

In the case of my family, it was a bit different.  My grandfather started HD but because he's kinda special, he was cared for quickly.  When it looked like that I would be needing dialysis soon, my family couldn't handle two people in the same household on dialysis so we had the opportunity to move to Canada.  I'm sure my grandfather could've pulled a few strings but I expected to be on a waiting list.  I knew my kidneys were going down the tubes (that's a bad pun) since I was a kid.  However, at the time, there was nothing the medical professionals at the time could do.  I've seen the bad side of the effects of the fall of the Soviet Union on medicine and I've seen changes in the right direction.  I wouldn't suggest for a random expatriate or traveler to start dialysis like a "beast from the East" but I honestly wouldn't mind moving back and dialyzing at one of the new centers!

Holy smokes, I didn't realize how long this turned out to be.  You're probably going to hate me.  But anyways, I hope I answered your questions.  If you'd like to know more, drop me a line.  I'm not feeling too great today so I apologize if my English is all over the place.

[CatonTheRoof]

Ochen spasibo !    it was long indeed, but a nice reading nonetheless!

You know, for sometime I have been suspecting that there's some factor in Slavic countries that is producing kidney failure.     I mean it so because I also have read that there's many, many people with such problems on what is nowadays the ex-Yugoslav countries.  But then again,  it all depends on the cause. 

As for my case?   Well I didn't consume drugs in Prague.   This was actually one of the first things I was asked both at the clinic in Prague and also here in Bogotá, Colombia.  It seems to be that the party-hard lifestyle of Czech Republic is infamous even here        My case was actually quite weird.   I have never consumed red meat,  wasn't much of a chicken consumer, and perhaps my only vices during teenage years was to consume huge amounts of coca cola.      Even though my constitution has been rather slim since I was 16, I was in a good physical shape and was practicing athleticism here in my university before moving to Prague.
Then near winter's end of 2011 I developed a cold that didn't go away.  When I went to the clinic hoping to receive some antibiotics,   to my great surprise it was discovered I had end stage kidney failure, like WTF?    The only explicable reasons I have given to this is that either I had chronic kidney failure dating back to early childhood and I didn't know at all,   or that the cold I got was actually some weird bacteria or virus that harmed the kidneys a lot in less than 7 days.      Its impossible to know now           Also i think that my life style opened the doors for this, because even though I wasn't consuming any drugs I was partying a lot until early morning of next day, plus going out to the street when it was below -10 degrees.     Since all that was new to my life and I put it in practice at the same time, it might have caused an explosive cocktail to my body. 

I was taken care of in a good public clinic there in Prague. Unfortunately they did not discover if it was chronic or rapid-progressive.  Anyway,  I was afraid of staying there far from my family, far from everyone I know, and decided to come back to Colombia.  Shamefully the treatment here during the first weeks was chaotic,  they actually lied to me about my physical state telling me I was getting better even though I was close to diying.   Don't know actually how I managed to survive two weeks at home eating a high potassium diet while my kidneys were failing,  it was a miracle!
Luckily,  my mom and I went to the best clinic in town and the head nephrologist decided to "cheat" the healthcare system of my country, and dialize me immediately.  There after I have been first on haemodialysis, and later peritoneal (until now)

Talking about the healthcare system of my country. I must say that it is very weird,   crazy as almost everything Colombia-related.   Most people in the world have this idea that my country is poor (which is actually not)    quite rich on the contrary,  but politicians ALWAYS steal the money and this never changes, despite the goverment changing, etc.    Here you pay a monthly fee of medical insurance (around 35 US dollars)  and you're supposed to be covered for everything.    However, many people die needing dialysis because they keep being delayed, or simply the insurances won't answer.   This has happened to many people sadly.  Vast majority though manage to receive their treatment and later transplant without having to pay anything (not even the immunosuppresants)      For achieving this you must sue the insurance sometimes though        I'm lucky to be from the capital since here there are many good and private clinics were I'm treated if anything bad happens (knock on wood)


Sounds crazy that a person from Vladivostok has to travel to Moscow in order to get treatment!  But well maybe its because I'm a russophile in some sense that I believe your country will be progressing!  On the other hand, the situation in the Ukraine sounds much worse       here in my country the national health service used to control all dialysis units, but this changed some 10 years ago.  Thereafter the corporative fever invaded my country and now everything is Fresenius and Baxter.  With both its good and bad things.   As for me I'm treated in the former. 


One last question for the moment:  How did you manage to move to Canada once after you had kidney failure?    Didn't they put you problems for the visa?       There are some ongoing changes in my family and I might consider leaving the country once again, however I believe it could be difficult even if I get a transplant?  I mean,   maybe I would have to pay for my own treatment? 


Good luck, and nice to "meet" you!

[UkrainianTracksuit]

I’ll address the issue of immigration and visas first.  It is very common for Canada to deny most people that are chronically ill.  This would be the case of any country I would gather.  What one needs is a really good immigration lawyer to argue the case that a) you will not be a burden on that country’s social services b) you will contribute to that society.  A physician will complete a medical report and further investigate the situation at hand.  The main thing to prove is that as a patient, even on dialysis, you can be self sufficient.  Or, if not totally self sufficient, you bring a better net benefit than what you take away from the services.  The problem arises that once you become a resident, you are entitled to the provincial health care.  There isn’t a way to “force” immigrants to keep their promises to pay their way instead of relying on the public system.  That’s another reason why applicants are outright denied.  With the help of the immigration lawyer, we proved that we can take care of ourselves.  My father set up a business where some of my grandfather’s care is offset.  As for myself, during the application period, I was a Section B candidate meaning I just needed routine specialist care.  I managed to stay off dialysis for 6 years.  During that time, I studied or was employed with good jobs.  In the end, I did what they want all people to do: pay taxes!  While it is difficult to achieve residency, it is not impossible.  I guess in the end, money talks. 

I would gather it would be best for you to be transplanted in Colombia.  At this time with your current situation, perhaps, all you need is a little patience.  If your health system covers so much, it would be best to make use of it.  I know that 10% of all transplants done in Belarus are done for foreigners but they are paying BIG money.

It was interesting to read and compare the health care system in your country.  I think out of both of our posts we can see that globally we have much to learn about health care.  I hate to sound like a preacher but take care of yourself and you could be in Prague again.  Who knows, if you are a Russophile and Slavophile, perhaps you can use your experiences with kidney disease to help people in the region.  Renal failure and dialysis is a global curse and in a way, we’re the lucky ones to have care.  Take care. 

[galvo]

I have found this to be a very interesting thread. My thanks to both of you.  I am so pleased to be Australian!

[CatonTheRoof]

Thanks for the quick reply, I certainly want to help other people with kidney problems.  You could not imagine how people lack education here concerning the topic.     When they're diagnosed with ESKD is like they give up,  and throw their lives away.   

I'm lucky that somehow after more than 2 years and a half I still urinate normally, and don't have any diet restriction except for those imposed by myself (no dairy, no red meat)    Also my hemoglobin is always in decent levels without external help.      I feel sorry for those on haemodialysis that must deal with so many restrictions, specially water one!


And Galvo:  Sure feel lucky of being Australian   your country is a very nice one!     is also cool you don't have to deal with the problems other countries have.

[kristina]

Hello Caton,

have the doctors checked-up if by any chance you suffer from a rare disease
which could have been the cause of your kidney failure, especially during the cold winter season ?

Some rare chronic diseases, like for example Systemic Lupus Erythematosus (SLE )and Mixed Connective Tissue Disease (MCTD),
are known to "attack" the kidney function during a flare-up and these diseases are often very difficult to diagnose ...
... in fact, these diseases are often only diagnosed whilst the patient goes through a diffficult flare-up
and male patients are seldom checked-up as a rule, because SLE/MCTD very rarely "attacks" males...

[CatonTheRoof]

Hello Kristina,     well I had all kind of exams done in Prague everything came negative.  Months later to be admitted in the transplant list I had a "false" positive of one of these exams.   Immediately the doctors repeated it this way by ELISA form.  Everything came out negative. 

Then my transplant team realized even more exams, only peculiar thing?  I have a cat antibody,  having lived with them since I'm a kid. So I'm practically immune to their diseases,  got nothing to do with my own kidney problem, simply I'm CATMAN     haha

I have searched up all possible methods to discover what happened to my kidneys,  you know even considered the esoteric possibility that since I was in a city with "secrets"  something of such sort had happened. :p 

Since I urinate normally (quantity) and my hemoglobin remains ok without EPO or induced Iron, the doctor's approach has been to conserve the function I have, so no biopsies have been done.

What can I say?  I have investigated all possibly things and read on Chinese Traditional Medicine and Ayurveda interesting things.    As one of those, I learned that in East Asia they protect a lot the lumbar region during the winter months by covering it with extra clothes.    There's also this theory that every organ is connected with some feeling, kidneys with fear.
Anyway, I believe that certainly the death of my grand father affected me psychologically and left my immune system open to bigger things.     

It could have been either something mysteriously weird, or another possibility:   Back when I was 16 I had an episode in which appareantly I had a bit high creatinine or bit high proteinuria  (neither my mother or I remember which exactly)  back then and after a couple of day the medical insurance said it was nothing to worry about.   That was back in late 2005, and since then I had a good health until almost 6 years later so who knows if that was connected.


The kidney failure made me change a lot.  My whole approach concerning life,  feeling more responsabilities concerning myself and my family too.    Also had to cope for a while with gerd (vanished once I went organic)    and also a lot of anxiety (sometimes it still reappears)       If I can help anyone with advice or just a friendly talk, I'm more than open! 

[CebuShan]

Wow! I did not realize how different healthcare systems can be! I complain about ours here in the U.S. but I think I'd rather deal with that then go somewhere else! Thank you for the interesting thread!

[kristina]

Hello Caton,

interesting what you say about East Asia, the Chinese Method and the protection of organs i.e. kidneys.

I have also investigated different methods how to protect my pre-dialysis kidney function for as long as possible :

For example: in the Alpine region many residents wear special angora kidney-warmers throughout the cold season and if you travel to any of these Alpine regions
in Switzerland, Austria, Southern Germany, Tyrol etc, you can buy one or two or more of these kidney-warmers in special health shops.

The point of wearing these kidney-warmers is that they keep the kidneys (who are naturally not really protected by anything) at the same temperature
and they also assist the kidneys to avoid any draft...

I have no idea whether my kidney-warmers have been helpful, but I wear them all the same to keep my “two little fighters” as cosy as possible...

I also have no idea whether my strict vegetarian diet, eating only easy digestible vegetarian food, has been helpful,
but I have not found any better method to protect my fragile kidney function (10-12% no dialysis) and it seems to be working well for me so far... touch wood...

I have also been reading that psychological shocks or traumas can have a bad effect on the kidneys and there exists a phrase on the Continent
that when someone had a shock/trauma, that "it" surely must have “affected their kidneys”, meaning, that the kidneys are one of our most vulnerable organs
to be affected by shock, trauma or stress... but, to my knowledge there has not been any medical research done into this...not yet anyway...

I do hope you come across a medical detective who may be able to shed some light into the mystery of your kidney failure...

and I send you my kind regards and best wishes,

Kristina.

[CatonTheRoof]

Thank you Kristina,

Is nice to see more people taking a holistic approach!   I believe technology and modern medicine is the answer to the problems when things have really gone terrible.  Nonetheless,  holistic medicine works more from the preventive basis and can also help us improve our health once we are already on dialysis/have any other health issue.   As I mentioned previously, it is to my great disappointment to see how visceral people of my country are, and how they prefer to really destroy their kidneys by eating every kind of crappy food they find out there,  is like if the whole "YOLO" thing had been created here decades ago lol.  Even worse is the approach giving on the tv by the media; you know all those cheap soap operas?    I have laughed more than once when I randomly turn on the tv and witness a ridiculous scene such as: 

Person 1:  My dear I think I have kidney failure,  I'm going to die tomorrow..  I HAVE BEEN GOING TO DIALYSIS FOR 2 WEEKS  BUT MY KIDNEYS HAVE NOT RECOVERED. I LO.... (she faints and falls to the floor)

Person 2:  No No No!!!! God why!!!  why do you punish me!!!!    Ana Maria please survive my love!  noooooooooooooooo!  (scream directed to heaven, or better to say,  to the roof of the house)

Narrator's voice:  Unfortunately for Felipe, his love Ana Maria did not make it.    Had she been honest with him since 2 weeks ago, she could have received his kidney and could have survived a BIT  of years more.  Now she lies in the grave. 
________________________________________________________________________________________________________________________________________________


And so that's the typical approach given by soap operas and cheap shows to the disease.   Even though the ministery of health and protection tries to educate people,just as the difference clinics and hospitals, such abominable image perssts in the pop culture.



I read in one of your posts how you only eat organic and at home!  That's great.  Back when living in Europe I was all the time in restaurants but I barely do so now unless they're fancy ones  (not because of that, but the quality of ingredients)    As of the rest of restaurants use GMO food, or that has absorbed pesticides and fungicides.     For example:   Many restaurants will try to sell you "snook" or red snapper when it is in fact Pangasius  (a hideous Vietnamese fish that has been proven to be bad not only for kidneys, but system overall)       This is just an example...      most restaurants also use cheap oil,  and such.

[kristina]

Hello again Caton,

I agree with you that many holistic approaches only may assist,
but they do not replace the medical approach...
... problem is though, that there is not much in place to assist us medically
to stop (or even heal)  the deterioration of our kidney function ...

It is true; I rarely ever eat in a Restaurant and I cook my freshly prepared vegetarian food
at home, bake my own salt-free bread and buy my vegetables etc. fresh from the market.

... Here in the UK there is a Health-Tsar who has set up (at a very young age) many Restaurants.
He also teaches children (and their parents) how to eat fresh and healthy food...
I was almost convinced when I went to one of his Restaurants ...
I enquired what I could eat as a strict vegetarian with a fragile kidney function
and an allergy to onions and garlic...
To my complete surprise I was told that their food arrives already fully prepared - with garlic -
in their Restaurant ...

By the way, most Restaurants in the UK offer meals with garlic these days.
Garlic is supposed to very healthy, but Sociology teaches us
that “in the old days” and “dark ages” garlic was mainly being used
by the very poor in slums to cover for the fact that their food had “already gone off” long ago ...

Could it be that garlic is being used (again) by food companies ...fiercely competing with each other...
and the food quality has been compromised... and has become poor and cheap ...
and the ready-made food is being sold to Restaurants and Supermarkets
and garlic covers again for the poor quality of the food...  as it did in the dark ages ?