Question about the List

[kimcanada]

I have a cousin that is a diabetic, she has been loosing her eyesight over the years and is almost blind.  I haven't seen this cousin in many years and have been updated from an aunt.

Anyhow here is the question, today my Aunt told me that my cousin is now on the waiting list for a kidney, this is because her kidneys are failing from the diabetes.  I said to her, how can she (my cousin) be on the list if she isn't on dialysis...
To this my Aunt replied ...  it's because she is such a bad diabetic.  This makes no sense to me, does it make sense to anyone else?

Bewildered in Canada   

[vandie]

In the US, you don't have to be on dialysis to be on the list. 

In fact, they would not begin to test possible live donors until I had all of my testing complete and was listed.

[paris]

My understanding is that when your function falls below 20% you can be evaluated to be put on the list.  That was when I started all my testing.

[KT0930]

I also understand it that you don't have to be on dialysis to be placed on the list. I think you have to be at 20% function to be listed and 15% to begin dialysis. I may be wrong, but I think I remember hearing those numbers somewhere.

[coravh]

I have a cousin that is a diabetic, she has been loosing her eyesight over the years and is almost blind.  I haven't seen this cousin in many years and have been updated from an aunt.

Anyhow here is the question, today my Aunt told me that my cousin is now on the waiting list for a kidney, this is because her kidneys are failing from the diabetes.  I said to her, how can she (my cousin) be on the list if she isn't on dialysis...
To this my Aunt replied ...  it's because she is such a bad diabetic.  This makes no sense to me, does it make sense to anyone else?

Bewildered in Canada   

Remember that a lot of folks get confused.  Here in Canada you don't get on the list until you are actually on dialysis. But there is a lot of prep work to get on the list, so your Aunt probably meant that she is either getting the tests, or is ready to go on the list. Then there is also whatever access surgery you need too. They do prefer that people with diabetes attempt to get a living donor so that they can get a tx prior to dialysis, but unfortunately, we don't get special treatment as far as the list goes. At least that is the way it is here in Ontario.

[kellyt]

In the US, you don't have to be on dialysis to be on the list. 

In fact, they would not begin to test possible live donors until I had all of my testing complete and was listed.

This has been my experience, as well.  Actually, I completed all my testing today and my information goes to "the committee" on Wednesday.  I was placed on "the list" Dec. 5th, but am currently Status 7. I'll be activated Wednesday!

[petey]

When Marvin first started dialysis and first went on "the list" (here in the US), you had to be on dialysis to get on the list.  That has changed.  We have a friend who hadn't started dialysis yet (just found out that his kidneys were failing last summer), and he got a cadaveric donor transplant last week.

[kimcanada]

Thanks all for the replies...

I thought thats how it worked in Canada, I wonder how many transplants happen before you start dialysis, you would think that people that have been on dialysis would come first?

[okarol]

I have another question. Isn't is required that you begin dialysis in the US in order to qualify for Medicare coverage to pay for the transplant? Anyone know?

[vandie]

I have another question. Isn't is required that you begin dialysis in the US in order to qualify for Medicare coverage to pay for the transplant? Anyone know?

As you know, I was predialysis when I received my perfectly matched, fabulously beautiful kidney.  I was told by my transplant team that Medicare covered my transplant costs.   I filled out a boatload od Medicare paperwork.  I may be proven wrong if I get an emormous medical bill, but as far as I know Medicare covered the transplant.

[sisterdonor]

Okarol,

The answer is NO.  You do not have to go on Dialysis first to be eligible for Medicare.  My brother is an example.  He is eligible even though he never, ever was on Dialysis.  Fortunately, he also has private insurance so the Medicare is the secondary payor.  If he were to lose his private insurance then Medicare would cover him as sole and primary coverage.