I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: jdat on June 11, 2006, 09:11:17 PM
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Ok, long story short I am french american but have lived in France most of my life.
There was mention that I may have some kidney issues back in 1997 ( I was 15 at the time )when I was still living in France.
Nothing was really done, it was said that it might be Berger's disease and if it were nothing could be done to stop it so I never bothered trying to investigate it.
Fast forward to october 2003. I have been living in the Us for 2 years, and I suddenly started getting massive headaches very frequently. I thought nothing of it once again.
In passing I even wanted to consider getting health insurance but due to not having been with my employer long enough ( I was a temp for 8 months ) and when the enrollment time came around well they said I had to wait an extra year ( september 04 )....
November 2004 after almost a year of endless headaches my sight goes out in one of my eyes ( actually it was very blurry )....
I way AGAIN ( I really don't get a clue do I??? ) and 10 days later tell me myself ok 2 more weeks of this and I'm going to the doctor.... the day after my other eye started getting blurry!
I rushed myself to an eye doctor who referred me to and eye clinic the day after.
After that it was all downhill!
The eye clinic sent me to ER due to extremely high BP ( 240/150 !!! ).
They question me on my medical past and I mention that there might be a kidney problem.
I spent 5 days in the hospital, biopsy and all and it comes out that I am ESRD.
Stuck without any medical insurance, skipping more and more time at work, getting jacked around by social workers and basically getting nowhere I had no choice then to leave the US :-[
( I owe a 32000+ $ bill to the Clinic that took careof me in the US .... accounting or social workers ( which apparently they had neither of ) refused to meet face to face to discuss the matter so I basically wrote it off as a "pay in another life" bill )
End of january 2005 I made it back to France with many regrets. I had promised myself that I would never come back to France unless something massive were to happen ... I guess this applies!
Moving back in with the parents at age of 22 was not easy either on top of feeling like a total failure at life.
I did haemo for 2 months with a catheter and then I proceeded to do peritoneal dialysis. I HATED IT!
It sucked the life out of me. It took every once of liberty and freedom I felt I had left in my life ( running the cycler 10 hours a night ).
Eventually I got used to it but still hating it so much to the point of wanting to cry at night and pull the damn catheter out!
About a month or so ago I am told that seeing that my blood results have never gotten better ( creat actually higher than before I started this whole life of partying called dialysis ) with peritoneal dialysis I would have to go on haemo .....
At this point in my life it just seems like everything is getting worse and worse. I haven't been able to get a job in France since I moved back here january 2005 and I am feeling worse and worse ( mentally and physically ) by the day.
I have wanted to stab this nurse at the hospital a couple times for telling me it's fine you'll get used to it eventually .... NO I NEVER WILL! Maybe I will accept the process but I will never tolerate this terrible blow life has thrown on me.
I am also part of a ESRD related french forum but there certainly this much of honest talk and mixed humour as I have seen since I started reading something which we can all agree on " I HATE DIALYSIS ".
At this stage I also have serious doubts on me ever being able to return to live in the United States due to insurance issues and such. :'(
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Bonjour Jdat, et bienvenue ici!
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Bonjour Jdat, et bienvenue ici!
Hey hyperlite :)
you from Quebec or something?
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haha no...learned french in school
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Bonjour! Bienvenue! Vous allez trouver que les gens ici sont très sympa, et quoique le nom un peu négatif, ici j'ai trouvé un tas de choses positives qui m'ont vraiment aidées dans ma lutte contre cette condition affreuse.
[Hi! Welcome! You are going to find that the people here are quite nice and though the name might be a bit negative, I have found a load of positive things which have really helped me in my struggle against this awful condition]
Epoman, I never told you guys, but I am a French teacher as well. I teach French at our Community College and I did a Diploma in the teaching of French in France where I spent a year.
Jdat, where is the French forum. I would love to be able to chat en français. I know nothing of renal terms in French and I would sure learn them there.
Also, sometimes we can talk about Epoman without him knowing what we are saying. ;)
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Welcome to the board!
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...
here goes:
http://www.renaloo.com/forum/
( check out www.renaloo.com as well. It's a personal website created by Yvanie who is an ESRD started the website. You will find a lot of explanations of the whole process of renal failure which will help in learning the french terms ;) )
Otherwise you might want to check out:
http://perso.orange.fr/fnair2/index.htm
This is the website of an association called Fnair ( Fédération Nationale d'Aide aux Insuffisants Rénaux )( National help federation for Renal disease patients ) .
The website has it's share of information as well.
But I will add to this which might be of no surprise to you, english is always the best language to find info on the web.
Most Esrd related sites and forums are not very active in France and there is a little sense of community between the patients.
This might come from the fact that everyone is real real old ( and I'm only 24 so we don't connect ?? ) and a lot of centers have individual boxes ( kinda like cubicles :P yay another day at the office working part time! ) so it's difficult to have much if any contact with the other patients during treatment.
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At this stage I also have serious doubts on me ever being able to return to live in the United States due to insurance issues and such. :'(
Move to Canada :) Quebec is French/English and I know at least Ontario gives you free health care (OHIP: Ontario Health Insurance Plan) after you live here for 6 months.
I am glad I live here and am scared of what I hear about American Health Care ..... but my boyfriend is American (I live close to the US border) and he already has a house and it is paid for 100%. While me .. I lost everything and had to claim bankruptcy!
I worked 9 long years and lost it all ... and it was not my fault but it felt like a punishment. I have been sick since birth though so .... for the first 16 years to my life I was in a dream-like lethargic state that NO ONE could understand. Teachers thought I was lazy as well as my parents and doctors accused me of being anorexic because I was so sickly and skinny. Kids beat me up daily after school and no answers could be found. At 9 was when they discovered something was wrong because I was going blind due to high blood pressure. By then it was too last to save my kidneys. I was sick since birth with repeated infections but the doc I had as a baby told my mom she was a worrying first time mother .. over-worrying that is ...
So you can see I REALLY can relate to your story!