I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jenb on July 09, 2018, 06:22:05 PM

Title: advise whether to be active on the list
Post by: jenb on July 09, 2018, 06:22:05 PM

I'm sort of confused.  I have been on the kidney transplant list for about 3 1/2 years inactive.  I have not started dialysis.  My gfr is about 11.  I feel great!  My doctor recently said I should go active.  I guess I am questioning why I would take a kidney at this point in my life if I am feeling good.  Does anyone have a suggestion on this?   I know a lot of you have been waiting and are in a lot more need of it then me.  My doctor said if we could get one before going on dialysis it would be better.  However, from what I have been reading here, it could be another year before I need dialysis.  When they do my transplant they will remove one kidney because of cysts there isn't room for three so I guess a little bit bigger deal than regular transplant.  Anyone experienced that?

Title: Re: advise whether to be active on the list
Post by: iolaire on July 09, 2018, 06:42:31 PM

I would think that the healthier you are when receiving a transplant the better the odds for you post transplant recovery.  Especially if they are doing more major surgery to remove a kidney.  I was told to list prior to going on dialysis by a few years and still waited a full six years for a kidney.  I probably would suggest being active, you don’t know how you will react to dialysis and for many it’s a struggle. 

The best reason to wait for a transplant to me is to postpone the failure of the new kidney. Transplants last say 15 years on average so do you want say 2 of those years to have been easy pre-dialysis years? 

Title: Re: advise whether to be active on the list
Post by: Marilee on July 10, 2018, 07:34:18 AM

Hi Jenb - I'm guessing that the doctor is seeing a trend in your lab work - not just this month's numbers, but all of them taken over time - and perhaps the trend shows a decline in progress that leads the doctor to think that timing is about right to go active. As Iolaire mentioned, just because you go active doesn't mean there's a donor kidney with your name on it - it can take several more years for your turn to come.

Title: Re: advise whether to be active on the list
Post by: MooseMom on July 10, 2018, 07:42:57 AM

Following on from what Marilee said, you can be on the list and refuse a kidney if you are called.

The ideal is to be lucky enough to have a pre-emptive transplant.  The very process of dialysis is very stressful on the body, so being able to avoid it would keep you fitter for surgery.

Title: Re: advise whether to be active on the list
Post by: cassandra on July 10, 2018, 08:49:54 AM

I agree with all that's been said above. Go active!!


Love, luck and strength, Cas

Title: Re: advise whether to be active on the list
Post by: jenb on July 13, 2018, 09:29:27 PM

Thank you all for your advise.

Title: Re: advise whether to be active on the list
Post by: Simon Dog on July 14, 2018, 06:24:15 AM

Learn about KDPI and activate.

If you get an offer for a really good kidney (what is really good depends on what you are eligible for based on your EPTS), go for it.   If you are offered a mediocre one, pass and wait for choice meat.