Home dialysis

[akbar]

I've been a kidney patient for a number of years and have been "groomed" for hemo-dialysis. I was diagnosed at a very early age and have always been uninsurable. My doctor has arranged for vascular access surgery which is scheduled in the very near future. I recently visited the acute care dialysis facility where I will be expected to begin dialysis and it's quite put me off the whole idea. It wasn't at all what I expected, much more of a hospital environment with patients lined up in beds in a rather crowded ward. I'd been told that I'd probably only use this unit until they established my dry weight but now am informed I'll need to use it for 3 months until medicaid kicks in. The sight and smell of the place made me sick, and I can't reconcile myself to being sick in front of a crowd of strangers. Must we surrender our right to privacy to be obtain teatment?

[DoriSchatell]

Dear Akbar,

While 92% of people with kidney failure in this country go on in-center hemodialysis, only 25% even know that there are other options. You titled your post "Home Dialysis," so perhaps this means that you know there are ways to do dialysis at home? There are 5 ways to do home dialysis:
-- CAPD (manual peritoneal dialysis)
-- CCPD (cycler peritoneal dialysis at night)
-- Conventional home hemo (3x week treatments at home)
-- Daily home hemo (2-3 hour treatments 6 or 7 days a week at home)
-- Nocturnal home hemo (8-hour treatments 3-6 nights a week at home while you sleep)

Home dialysis gives you privacy for treatment, control over your schedule and your health, and in some cases (with nocturnal home hemo, and to some extent daily home hemo) a near-normal diet with no or almost no fluid restrictions.

If you train to do home dialysis, you most likely would not be in the crowded clinic for very long. It's also important for you to know that you may have other options for which clinic to go to. Most people don't know that there may be a number of clinics in their area. It may be necessary to change doctors in order to change clinics, or it may not be.

You can learn about all of the home dialysis options and where to find them on another site that is operated by the Medical Education Institute: Home Dialysis Central, www.homedialysis.org. There are active message boards where you can ask questions of people who are using home treatments, and read stories about each type of treatment.

Good luck!

Dori Schatell

[Beth Witten MSW ACSW]

Hi Akbar,

You say that you're going to have to do dialysis in a clinic until Medicaid kicks in at 3 months. I suspect that you may be thinking about Medicare. If you have worked and paid Social Security/Medicare taxes long enough and you have kidney failure, you can qualify for Medicare. You're right that Medicare has a 3-month waiting period. However, this is only if someone chooses to do dialysis in a clinic. Medicare can start sooner -- in fact, the month you start dialysis -- if you start training to do any type of dialysis at home before the first day of the 3rd full month of dialysis.

When you get Medicare, you may be able to get a Medicare supplement (Medigap) plan to help pay what Medicare doesn't pay on Medicare claims.

If you have limited income and savings, you may qualify for Medicaid, which is medical assistance through the state.

When you start dialysis (and you might ask before), you will have a social worker to answer financial questions and help you cope with kidney disease and set goals for the future.

By the way, most dialysis clinics are not like the one you describe. Most do not have hospital beds but have recliner chairs and some have TVs. I may have gotten used to the smell, but I don't remember the dialysis clinics where I worked having nearly as much of a smell as hospitals do. But if you do home dialysis, you can sit in your own recliner, eat what you want (on your diet) when you want it, do what you want during dialysis, and the only smells you will smell are the smells of home.

Good luck!