Reason for bad reaction to dialysis found

[mysticnight]

Hey,
I started dialysis 9 months ago and posted of my problems with a bad reaction since day 1. Nephro is an idiot, that is obvious.
I have been in the hospital the past week with bp of 250/110 for 6 months now. Nephro blames me for not taking pills and claiming "allergies". He don't get bad side effects or actual hives are reasons to stop. Still, I told staff when I stop pill or not.  Long term high bp causes fluid in the lungs, and I got so I couldn't breathe or walk 2 steps without gasping for 5 months. Was told it was an anxiety attack then anemia. Was sent from dialysis straight to ER last Friday.

I asked the head of ICU about my reaction to dialysis, and without having to blink he knew! 9 months of nephro having no clue, this guy knows it. Dialysis Disequilibrium Syndrome. Causes brain swelling during dialysis and lots of neurological symptoms. High ICP causes high bp, which causes the heart problems.  Fits perfectly. And with my other suspected health issues also revolving around high intracranial pressure. I feel like the world just began and I have answers and a solution.  and possible a law suit.

Two days later I finally chat with the nephro on call who oversees this, and he doesn't know this disorder and won't deal with it. My nephro is away and I can't get in for 6 weeks. sigh.  I don't know what to do anymore.

back to incompetency and idiocy that will kill me.
sorry for typos and bad grammar, laptop keep randomly moving cursor.

[Michael Murphy]

I hate to say this but I googled Dialysis Disequilibrium Syndrome and I read a Wikipedia entry on it and it was remarkably clear.  The opinion expressed is that it is caused by too aggressive of a ramp up of dialysis.  It's the reason why when you start dialysis your time on is shorter and the speeds are slower.  The solution was to move patients on to a less stressful form of dialysis such as daily home hemo or nocturnal in center.  If you nephrologist can't bother to google this I wouldn't let him touch me.  Read the entry your self and see if it's as simple as I think it was.  I would find a new nephroligist before this one kills you.

[kristina]

Hello mysticnight,
I was just looking up "Dialysis Disequilibrium Syndrome" and it sounds really frightening !
I don't know what to say and I hardly can imagine what you go through
but I do hope you find a way to get treatment soon and please let us know about it ...
... It also frightened me to read about "Dialysis Disequilibrium Syndrome",
because I have started to develop a terrible headache during my session yesterday
and I even had to go home after having only three hours because of these terrible headaches...
... I still hope it is "only a "dialysis-beginners-hiccup" and hopefully it goes away soon....
I do hope you can find a doctor soon who can help you and if your nephrologist cannot help you,
perhaps they can help you at the Hospital-Emergency or perhaps your dialysis-center can help you
to put forward an emergency-consultation with a doctor as soon as possible ?
Best wishes and good luck from Kristina.

[Rerun]

Just shake my head.

       

[kristina]

Hello Rerun,
good to "see" you. Please tell me, why do you shake your head?
Are those symptoms and reactions "normal" when on dialysis
or are they "just stages" every dialysis-user goes through at one time or another?
Or do you shake your head because mysticnight's reaction to dialysis was not diagnosed straight away?
Thanks from Kristina.

[mysticnight]

Thanks all for your comments.
The plot thickens, like garbage. The nephro came back and said it cant be that syndrome, because it only lasts 3 days at most before resolving naturally. Well, i don't think that is quite true, but if I have the symptoms of it, wouldn't it make sense that maybe i just plain have high intercranial pressure, and maybe talk to me about it, or treat it. Why dismiss the symptoms with the diagnosis!  The idiocy never ends.

Unfortunately, in Canada here, i can't just find another nephro. I need a referral from my PCP faxed to the nephro, accepted, faxed back, and wait months fo the appt. I started the proces,but so far no nephro will agree to consult. PCP is trying to get me someone to investigate, but also no go. Been to ER many times about this, even had the reaction in front of them and they tell me its normal!This is a 9 month long sick joke. I"m beginning to think I am invisible!

Kristina,  sorry you had a headache. It just makes the whole dialysis experience so much more unconfortable. The headache I get is very unusual and specific, so try not to worry too much yet. It just may be a regular headache or a setting needs to be adjusted?

[Michael Murphy]

Kristina when I started dialysis after about 2 months I began to have headaches my doctor suggested I eat before dialysis.  Instead I bring either some fruit or a serving of dry Cheerios  and eat after I am hooked up.  The headaches mostly stopped and Tylenol seems to stop the occasional one that I stll get.

[kristina]

Thank you Michael,
You might have a point, because I have always had my snack after about one hour of being on the machine
but today I shall have my snack immediately as soon as I have been connected to the machine
and hopefully it "does the trick"!
Thanks a lot from Kristina.

[kristina]

Thanks again Michael.
As soon as I was connected to the machine today, I had my snack
and to my surprise there were no headaches at all.
I shall do exactly the same at every dialysis-session from now on:
As soon as I got connected, I shall have my snack straight away...
... by gosh ...  it makes all the difference!
Thanks again Michael and I send you my kind regards,
Kristina.

[Michael Murphy]

You are more than welcome.  I am glad I could help.