Carer of partner soon to start dialysis - Australia

[LisaBart]

Hi, I have been looking for some support & information from "the horses mouth" so to speak Am pleased to have found so much information here.
My partner's kidney function is currently at 7%...and he is digging his heels in, not wanting to begin dialysis.  I feel housebound keeping an eye on him,
and yes it gets quite depressing....many more worse off than us though I guess.
He was diagnosed with Pauci Immune Crescentic glomerulonephritis (anca positive) in 2005 and was at less than 20% function then...... we believe his kidney damage is the result of his work with solvents used in his job as a plumber over the past 30 years... (NO family history, not genetic, has 6 siblings all fine) his first recollection of something being wrong was the change in the feeling in his feet....he has peripheal neuropathy - He is NOT a diabetic, his sugar levels are all good. Next was the frothy, dark urine & elevated blood pressure....ignorant doctor didnt even do a urine test...this was done when I took him to ER with a BP of 220/110....a biopsy revealed the disease. 4 years later he had a heart attack x 2 and a 5 way heart bypass.
Anyway, he finally has a working fistula, nephrologist, 1 of them would like him on dialysis now, but others say wait....he is still eating, still eliminating plenty of urine, gagging & vomiting sometimes but not constant, really feels the cold, and is very lethargic, yet doesnt sleep well, due to urinating mostly at night.

So, I wonder if anyone else has this same kidney disease, our nephrologist who first diagnosed knows of 7 others...

I look forward to following some of your journeys and hopefully gaining more insight into dialysis from you all.....seeing as though I will be his "home nurse"

Lisa - Australia

[Darthvadar]

Hi Lisa....

Just a quick message to say Hello, and  to IHD....

You'll get lost of support, information, and advice from our very knowledgeable members...

Hope it all works out for you both!...

Darth, Moderator...

[Poppylicious]

Hello Lisa, and  to ihd.com.

I was lucky (!) because my Blokey didn't have a choice about beginning haemoD ... his creatinine was so high that they rushed him into Hospital and that was that.  In a way that made it easier because he wasn't able to dig his heels in and wait.  That doesn't help you, obviously!  I suppose the decision is ultimately his and his nephs.  The likelihood is that he *will* feel (a bit) better once he begins haemoD, but I can imagine there's that sense of 'well, once I start there's no going back' to deal with as well. 

*huggles* for both of you.  Feel free to come on here and rant or laugh.

Poppylicious, Moderator

[Bambino_Bear]

  Lisa


My husband did begin to feel a lot better once he started doing PD.  As the toxins cleared from his body he was more like his old self.  The thought of dialysis was worse than the actual treatments.