Greetings from the capital of Colombia

[CatonTheRoof]

Hello people   I've been reading this forum for many months, but just until now I decided to join

My name is Matteo, I'm a 22 years old Colombian, from the capital of the country which is Bogotá.  By random circuntances of life I ended up having kidney failure, shit happens I guess.. considering that whatever I suffered was very strong.  Now I'm dreaming of being dialysis free

So here's my story:

I was the the "happilly forever after" part of my life.  I went on September 2010 to study to the amazing, beautiful, and spiritual city of mine, Prague in the Czech Republic.  To be more exact, I went there to study International Relations.   I was enjoying a cultural life full of classical music concerts, art galleries, meeting people from around the world, and yeah of course the night life and the amazing beer from that region       I can say I was a very normal young person in that sense, even though I was never promiscuos nor tried any kind of hard drug.
Before living in Prague, I always had a wonderful health, slim person, semi-vegetarian, perfect blood pressure, etc.   

After February  19th of last year (5 months after arriving to Prague)  I caught a "cold"  at the most popular night club in Prague, there were people many regions of the world at that disco (it's a quite big place actually).  For one week I remained with cold like symptoms of which I didnt pay much attention as I thought it was just a flu,  I can remember I had mainly tiredness and sore throat.    I had felt recovered, but after about 6 days I had a small episode of diarrhea, and the next day I started to experience something very weird with my appetite, which was that I would feel very hungry but when I would try to eat something, I would feel inmediately full after just a bite.  I remember I felt very thirsty all the time, and I even decided to take some painkillers as I had some headache, in the mean time I contacted my international insurance as I was sure by then, that I had some kind of infection and this wasnt a simple cold, due to the fact that my mucose was completely dark red.   
Two days later I went to the medical center, there they made me a test in which with a sterilized needle they took blood out one of my fingers, then they passed the finger through some kind of paper, that was in order to determine if I had a bacteria in the blood...  they told me results from 1 to 8 would be normal, and I got 17 :O     Anyway... they told me to return the very same next day at morning so they could checked me completely.   Next day in the morning, they did complete blood works, along with taking my blood pressure (which was about 140/85 at that moment)    they told me to wait some hours until the results would come out, so in the mean time I decided to go to the university for a lesson.   When I returned at 2 pm, the doctors were seeing me as if I was a walking corpse, they informed me that the creatinine was very high (about 5,9)  and that I had some conditions such as hiponatremia, and metabolic acidosis,   in that moment they took my blood pressure again and it was 157/90.    They told me to remain sit down while they would call an ambulance to take me to the clinic, also the doctor informed me that the good part was that I wasnt having hyperkalmia in that moment.
Anyway, I spent 6 days at the clinic in Prague in which creatinine went up to 6,3  and I got hyperkalemia while hospitalized, there those things were solved without the need of dialysis, and they started giving me 50 of prednisolone.  Ultrasound revealed smaller kidneys than usual, all tests for ANCA, ANA, AIDS, everything else that exists, came out negative, thank God.     Biopsy was meant to be done, but my insurance didnt want to pay (actually they refused to pay anymore, even though I had fonds for 50,000 euros of treatment)     So considering that I was a student and I couldnt afford all that by my own, I returned to Colombia on March 9th, after a fly of two hours from Prague to Paris, and then 11 hours to Bogotá.
Here things were much more chaotic, as in a very arrogant form the doctors suspended me the prednisolone, causing me to start having proteinuria in nephrotic ranges, hemoglobin went down, creatinine went very high,  and they started giving me some medicaments that caused me hyperkalmia.  The worst of all, is that they told me I was recovering and sent me back home with 20 mg of prednisolone after realizing their mistake.

At home with my mum and cats I remained with the potassium at 6,1 for two weeks, until we went to the best clinic because I was feeling a strong tachycardia, and a cold that I wasnt even feeling in Prague during the coldest winter days.

From that time one, I have been first on hemodialysis (from April to Octuber 2011)  and then to this day on Peritoneal.   I have good luck of having a lovely mum, but it lucks that my luck with corporations isnt good at all.  As fresenius medical care is a horrible company, they treat patients as cattle and always try to install fear on them, I really wish I wont have to see them more soon.   And also the colombian insurance in charge of covering everything (not the same as the one I had as student in prague)  is acting in a veyr dilaying way concerning the transplant.   My mum is of my same blood group,  she has excellent health even though she's 60, but we haven't being checked for the possibility of doing the transplant this way... heck, they havent even put me on a waiting list!


I'm optimist anyhow,  for I believe that life is good and generous, and whatever I suffered could have killed me but didnt.  Now my only dream is to be able to recover again the life I had in Prague.

I would appreciate to make friends here, and also to know if someone suffered from a similar case to mine, and has any clude about what did I suffer exactly, as no one knows and all kind of other disorders have been discarded.

Last but not least, sorry if I commited mistakes.  Its very late, I'm tired, but I decided to do this message now
   

     

[Traveller1947]

Welcome, Matteo!  Yours is a very interesting story.  I have no answers for you, but wanted to wish you every good luck on your quest for a transplant.  Your positive attitude will help you a lot.  All the best to you.

[willowtreewren]

Hi, Matteo. 

I'm glad you came out of "hiding" and decided to join us.

Your story is quite interesting, but I'm sorry you had to go through all that.

You have a supportive family and a great attitude, though! 

Aleta

[billybags]

Welcome to the site Matteo. What a story, you sound like you really enjoyed your self in Prague, such a shame it ended like it did and as you said you are still alive. I really hope you get a chance at getting a transplant. You sound really young and positive.Are you coping OK with the PD, is there any chance you could go on an over night cycler. Have you got them there. I don't know much about Columbia, are your health facilities good? Look forward to your posts.   

[CatonTheRoof]

Hey again

Yes, I have a night cycler of Fresenius.  I don't know what kind of model it is, as it's kinda big and different to what I've seen on youtube videos.

I'm coping well with it   Even though the fresenius people are EVIL asides from the doctor that sees me every single month.  In a very naive way I thought social workers were supposed to be your friends and make your life easier, so I asked mine how could I do to dialyze in case  I havent had the transplant yet this summer and I feel like going for a couple of weeks to Europe. The replied in quite a rencorous way about me having the money to go there, saying that there's no way whatsoever to travel abroad while on dialysis, which is absurd considering I've heard many stories both offline and online.

I'm really thankful to have forums like this and others, plus many web pages to research about the issue.  It seems to me like the fresenius people don't like that lol.

The best thing is that I keep urinating more than 2000 ml per day, plus until some weeks ago I was taking a 1/4 of a 50 mg tablet of Metroprolol each 12 hours, and now I'm not taking anything as the Blood pressure remains completely perfect by itself.      I only take the calcium tablets which cause me a bit of constipation.

[cassandra]

Welcom Matteo,

[Bajanne]

Bienvenido a nuestra comunidad!  Pero tu ingles es muy bien.  Felicidades!a
So glad that you found us, and thanks for that intro. Our founder, Epoman, would give you an A+ for that comprehensive intro.  Hope every thing works out for you .
Espero veerte mucho aqui!




Bajanne, Moderator

[kristina]

Hello, Matteo, and welcome to IHD.

I do hope your dream comes true and you have a chance to be dialysis free !
 
I had to look up hyperkalemia because I have never come across it!
It sounds a frightening experience how you lost your kidney function and I wonder how it came about.

I am sorry that you had to stop your studies in Prague. That must have been a huge disappointment!

I am a great fan of Prague myself and I love most of all the artistic Villa Bertramka where Mozart stayed.
Sometimes I wonder what would have happened if Mozart had stayed in Prague for good
because the people of Prague really appreciated and understood his genius.

I don’t know much about Colombia but once I listened to a folk-group from Colombia
and they played their pan flutes and it was wonderfully relaxing to listen to them.
The pan flutes are together with the harp and the early Fortepiano my favourite instruments.

Best wishes from Kristina.

[Rerun]

Hi CatonTheRoof, and welcome to IHD.  I'm so glad you found us.  Wow... what a journey you have been on.  I can see you long for your life in Prague.  Keep on them about getting a transplant. 

Rerun, Moderator    

[lmunchkin]

Welcome Matteo!  You will find this site very supportive!

lmunchkin

 

[kristina]

Hello, again, Matteo,

You sound as if you have examined the time before you became unwell
and you mention that you became so unwell after visiting this Night Club Disco in Prague.

What sort of Night Club was it? Was anything happening to you there?

Did you leave your drink unattended or did something happen
which puzzled you at the time and makes you wonder now ?

Did the doctors in Prague have similar cases like yours or were you the only one ?

Best wishes from Kristina.

[Poppylicious]

  Matteo!  Lovely to 'meet' you but sorry for the circumstances.

I LOVE Prague; it's one of my most favourite places (not least because my two very gorgeous nieces live over there!)  I hope you get the chance to go back again.

[CatonTheRoof]

To Kristina:   I didnt feel much the hyperkalemia I had.  I believe that the tachycardia was more because of the hemoglobin being at 9.2 in the worst point.  I just remember feeling some pressure in my chest when walking.

About Prague, yeah its a lovely city.  Your nieces are very lucky to live there!  The best time in my life so far has been there      I also believe Mozart should have stayed in Prague instead of returning to Austria.  Did you know he died because of kidney failure?     

About the night club I attended, it was this: http://www.google.com.co/search?hl=es&q=karlozy+lazne&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1366&bih=619&um=1&ie=UTF-8&tbm=isch&source=og&sa=N&tab=wi&ei=L_RPT9GgJdDogAeUu4m8DQ      Its a disco composed of 5 different floors, and divided by at least 10 different spaces.  In each single space there's a different kind of music.       Many friends told me to not go there because I would lose my time, what I didnt know is that I would lose more than that lol.

Concerning that night, I remember I had gone first to a mexican restaurant to a dinner held by some friends.  In that place I ate some cheese quesadillas with beer, and later some tequila  (tequila is among the drinks that I didnt usually drink, as I havent been a fan of it ever, plus it causes me big hangovers)  however that night I decided to drink tequila.
Then at around 11 pm, I left the mexican restaurant and took the tram to the main square of Prague, which is about 700 meters from the Club.   I walked those 700 meters, I remember it was around -5, but I didnt feel cold s I had my winter jacket.
Inside the place the temperature was unbearable, it was around  +25 degrees and I felt asfixiated.  For the rest of the night I didnt drink anymore alcohol, just had a coca cola...   the barman passed me the coke already on a glass with ice cubes, so perhaps he threw something inside the liquid...  but why would he do that?     after going out of the club at around 3 am with my friends I took a tram,  and that's when I started feeling a bit weird, I felt my heart quicker than usual, also experienced a strong thirst which made me stop for a coca cola in the middle of the road home (had to go down the tram)    I believe it was a really bad idea to drink something cold in the middle of a 24 hour restaurant...   Anyway after taking the second tram and arriving about 300 meters from the place where I used to live, my mother called me from Colombia so we spoke while I walked home.    I remember I felt weird, because I lived in a 4th floor in a building with no elevator, and I used to climb the stairs without problem, but that night I felt tired after doing so. 
Then it comes the 2 weeks time in which the situation degenerated from being a "flu"  to the kidney failure I was latter discovered with.    Apart from the tachycardia, I also had a symptom that no one in Prague nor here could explain, which was trembling of the hands (it remained until some dialysis sessions in Bogota). 

Apart from me, a friend that was with me at the club also got a flu that night.  The difference is that she went to the doctor and took antibiotics, I don't know if the two cases are related.  I didnt have any kind of sexual contact with her either.   
Doctors in Prague were confused about my case, because when they found small kidneys they thought that it was Chronic, but after the hours went by, they told me that it wasnt acting as a chronic case but more like something rapidly-progressive.   A doctor even suggested if I had been poisoned somehow, had been in contact with Mercury, or something of that style because it was very weird.

My theory is that standing in the extreme cold (about -8 degrees)  for about 3 hours in early January for renewing my visa, took its toll on my case.  I think that the cold could have caused a circulation problem in the kidneys, triggering the death of part of them.   Since then, the kidneys havent deteriorated further.   

[kristina]

Hello, again, Matteo,

I have read that Mozart suffered from a rare kidney disease whilst he wrote the Requiem Mass
and that he died of kidney failure.

I do understand your situation because I was in a coma when I was brought to hospital with kidney failure.
I was only a youngster, over 17 years old and I was very lucky when my kidneys picked up again and functioned ~40-45%
until August 2006. Since August 2006 I have been pre-dialysis ESRF.

There was no medical explanation why my kidneys first failed (a biopsy diagnosed chronic proliferative glomerulonephritis).

A medical explanation came forward in 1995 when I was diagnosed with Lupus/SLE and in 2003,
when I was diagnosed with a very rare genetically inherited variation of Mixed Connective Tissue Disease (MCTD). 
A Lupus/MCTD flare-up caused me chronic proliferative glomerulonephritis
and made my kidneys first fail when I was only a youngster.

I am wondering why your kidneys failed so suddenly. Was it due to an undiagnosed disease which gave you a flare-up ?
Was it due to an allergic reaction; or was it a disease you picked up?

Perhaps it might be a good idea to ask the doctors in Prague again whether they have come across other cases with similar symptoms ?
Or perhaps ask a newspapers in Prague if they have heard anything ?
Or perhaps you could write to a government health spokes person whether they have come across anything?

I do hope you find the answers and I do wish you good luck and I do hope your kidneys pick up again.

Best wishes from Kristina.

[CatonTheRoof]

Kristina, were your kidneys already small when you got that first kidney failure at 17?

You know, around two months after I came to my country, there was that famous epidemia sprout of E-Coli in Germany, the symptoms were very similar so I decided to contact the clinic in Prague and ask if they had got a case similar to mine due to that E-Coli.  They told me that it was actually very similar, specially how it evolved, but at the same time it was weird because my case was in the end of Winter, not middle Spring, plus whatever bacteria I had been detected with in the beginning, disappeared by itself.

I do believe that kidneys would have recovered by now if it had not been because of a clinic here.  Since when I first returned here and they checked my medical history of Pragie, the first thing they said was that the medicine here is better than in those ex-communist countries.   They told me they wouldnt give me more prednisolone, I told them they were crazy because in Prague I had been instructed that by no means I should stop to take that drug for the moment.  Plus, the creatinine had gone down from 6,3  to 4,6 already and the hemoglobin had recovered a bit.   Two days after being taken out of prednisolone, I got for the first time proteinuria in nephrotic syndrome ranges, and hemoglobin went down again.   Worst of all,  after they realized their mistake they decided to treat me with it once again, but instead of 50 mg daily, they just gave me 25 mg which was nothing for the situation in which I was.  To conclude with, I was sent home with hyperkalemia and being told by the doctors that I was fine. :/

In total they have made me 2 ANCA test (one in Prague and other here a month ago)   two ANA,  C3 test,   etc.  Everything has come out fine.

A veteran nephrologist from my city, which is very wise concerning kidney health and such, told me that the case I got sounds extremelly similar to Good Pasture Syndrome, but that at the same time is impossible I got that because tests came out negative.

Since  I keep urinating and blood pressure is regulated without drugs, I have the feeling I can recover some function.  If I get enough function to live normal life, before the moment of the transplant, I promise first thing I'll do is go to a peregrination for a whole summer lol. 

[kristina]

Hello again, Matteo,

Yes, my kidneys are small and have always been small,
but that was only noticed at the biopsy (which diagnosed chronic proliferative glomerulonephritis)
one year after they failed and recovered again to ~40-45% function until 2006, when again I was told I am in ESRF.

Mind you, my kidneys first failed in 1971 and ever since then I was told by every nephrologist I saw
that my kidneys would soon fail again because they are so very small.
No nephrologist has ever explained to me
why the size of my kidneys has anything to do with how long they will function.

My kidneys are still with me and I call them “my two little fighters”.

I have always been told my kidneys are a child’s size like my other organs,
except my heart which is normal size because I was a very keen mountain climber from when I was a child.
That exercise must have been very valuable for my health.

I also have been on a strict vegetarian diet ever since my kidneys first failed in 1971.
No fast food, no alcohol, no restaurants etc. and I still cook everything myself “from scratch” and bake my own bread etc.

It is amazing that your blood pressure is regulated without drugs, that surely must be a good sign
and I do hope you can recover some kidney function soon.
I do hope the doctors can find out soon what caused your kidneys to fail
and I keep my fingers crossed that your kidneys pick up again.

Good luck and all the best from Kristina.