Re: Hemo Dialysis at home

January 31, 2004

HI Deborah,

Welcome to our group. I am very sorry your son has reached ESRD. I

am not yet on dialysis, so I can't answer your specific questions, but I did

want to extend a welcome to you and .

As a parent myself, I can only imagine how hard it is to watch your son going

through this.

January 31, 2004

Some people have to be on 4-1/2 and even 5 hours at a time. It depends on

how big they are and how much cleaning of the blood they need for adequate

dialysis. It sucks, but what can you do. We can just be thankful we live now

instead of 15 years ago, when dialyzers were not as efficient, and a typical

dialysis session could easily be 8 hours or more.

Home hemodialysis is a program that's available on a limited basis in some

areas, but patients usually have to be long term, very stable, and with a

spouse or other close relative who is willing to be trained to be the

dialysis tech at home. It also requires a place where there is room for it,

and accessible plumbing. They might not want to do that until the potential

kidney donor situation is sorted out (and just that can take weeks). In my

opinion, you would be a lot better off discussing the possibility of

peritoneal dialysis with his doctor, if you want home dialysis, since that

option should be a very real possibility barring any medical problems that

would make PD not advisable (rare). There's really not much to switching to

PD from hemo. Even in places where home hemodialysis is a possibility, there

is usually a waiting list for home hemo, and patients have usually been on

dialysis for quite a while already.

If your son is weak after dialysis, first of course, you should discuss that

with the nephrologist. They may be aiming for a dry weight that is too low,

or they may be taking off too much potassium, or bicarbonate might be set

too high for him (it took at least 3 months after I started to get all that

sorted out, and even longer to settle on the right amount of blood pressure

medication). If all of those are Ok, you have to be sure that in between

treatments, he is eating enough potassium and enough meat protein, and also

drinking up to his limit. After dialysis, it doesn't hurt to have a drink

and eat something. Myself, and just about everyone I know does this.

Sometimes blood sugar is a bit low too.

I understand your concerns Deborah, since I've been through this myself, but

you have to be patient. Give it a few more weeks. It often takes 6 months

before a new patient really starts feeling better on dialysis. It does get

better.

Pierre

On hemodialysis since October 2002

Hemo Dialysis at home

Does anyone do Hemo Dialysis at home with a big kidney machine like in a

dialysis center? We want to do this with our 17yos or ds and I do. Dh says

NO, but his input is neither here nor there. Do you think insurance would

pay for or can you rent the hemo dialysis like a CPAP machines for maybe

less than 6 months. Our only other child and son who is 27 is going to be

tested to be a donor. Ds has been on HD at a hosptial or clinic since Dec

24, 3 days a week for 3 and a half hours a tx with hooking and unhooking

over 4 hours. He is weak after each tx and today it was mentioned to his

father and I that they might need to go on 4 hours or more.

Deborah Bowman/tn *Ü*

January 31, 2004

Hi Pierre,

Don't know about the US but in the UK it's very rare to fund home hemodialysis

-because of it's unusual nature, I'm usually the one who has to find the cash

and it's usually reserved for young children for most of the requests I've been

involved in - not sure how it works in the IS with the commercial aspect to

healthcare!

Dave