[pattualiasprem]

Hi,

She was diagnosed in Feb 2008 that she has PKD in both of her kidneys. Her creatinine level at that time was 4.2 and it has increased to 4.8 now. Her urea is around 80 now and BP is under control.

She is under medication and proper diet from Feb 2008.

All i need to know is,
1. When should she start dialysis.
2. Is kidney transplantation good for her? She is at her 53 age now and no sugar.
3. At what regular intervals, does she require dialysis.
4. What will be the cost for dialysis in india. (she resides in india).
5. Is it good to go for transplantation after several courses of dialysis.
6. What is the cost for transplantation in india?
7. What would be the cost of medication after transplantation in india?
8. If my dad donates a kidney, will the kidney be considered as related or non-related kidney? I heard that the cost of medication after transplantation for non-related kidneys are higher? Is that so?

Your suggesstions will help me to go in a better way on this.

Thanks in advance.

[pkdwoodman]

Hi,

I am not a medical doctor, but I have PKD. As far as I understand it, one can be put on the list (in the US) for a transplant when your GFR is around 20 %. Go to the PKD Foundation website, search for the webinar on transplantation. It is VERY good. If you can't find it, email me at [moderator note: e-mail address has been removed]

Transplants involve blood and tissue typing. A transplant is usually better than dialysis, for long term prognosis. Your doctor will help you decide when to seek a transplant.

There are different types of dialysis. My mother (PKD) went for dialysis 3 times per week, in Billings, MT.

As far as I know, it is better to seek a transplant before dialysis, as dialysis being the best we have, is still not the same as a functioning kidney.

I do not have any info on costs or other factors, in India.

It is best to follow a low sodium diet, and low protien. You still need a very small amount though.

Your doctor should be telling your mother, if she needs to reduce her potassium intake. As the kidneys fail, they have a harder time balancing the potassuim in your body.

Avoid caffeine. No tea, coffee, chocolate, etc.

Controlling blood pressure is VERY important. Most PKD deaths are related to cardiac, or heart problems. Second, is infections. Drinking lots of water is beleived to help, (studies are under way). At the very least it should help to reduce the liklihood of urinary tract infections.

I am on a clinical trial for Tolvaptan. Phase III. So far, no adverse side affects. It does make me thirsty, and urinate more. In fact, I drink quite a bit of water, all day and night. Eventually, I will find out if it is helping.

I don't think I've ever read anything about limiting sugar, in regards to PKD.

Transplantation from a live donor, offers the very best prognosis, if one is lucky enough to find a match, and can afford it.
Best wishes,
Joe