transplant questions

[josie]

Am wondering if there is a way to figure out how long I will have to wait for a transplant. I have been on the waithing list for 15 months. Also, what are thoughts about live vs cadaver kidneys. My boyfriend wants to be tested to see if we're a match, but I have not wanted him to yet as I am scared something will happen to him, and i wouldn't be able to live with myself. I figure maybe I should just wait for a different kidney. but if it is that much more of a better outcome with a living donor, I may consider it. I get scared just thinking about it. Blood type has a lot to do with it, right? I'm A positive. Any info would be great.

[jbeany]

It varies from state to state.  Check the UNOS website - they list stats about some of that.  You can ask your transplant coordinator what the average wait time is in your state, and from your hospital.  It also depends on your blood work.  Do you know what your PRA levels are?  The higher they are, the harder it is to find a match.  Some blood types are harder to match than others, so they do have longer wait times.

You can find out the stats, and get an average, but you are never really going to know when it's your turn until the moment they call.  It's all a random chance.

And yes, living donor kidneys have better outcomes and longer survival times.  Deciding to accept a donation from a living donor does come with some risks for the donor.  Most of them are willing to take it when the recipient is someone they love.  It's not an easy decision to make.

[josie]

what is pra?

[willieandwinnie]

josie, here you go.

Panel Reactive Antibody (PRA)

The percent PRA value is a measure of a patient's level of sensitization to HLA antigens. It is the percentage of cells from a panel of blood donors against which a potential recipient's serum reacts. The PRA reflects the percentage of the general population that a potential recipient makes antibodies (is sensitized) against. For example, a patient with a PRA of 80 percent will be incompatible with 80 percent of potential donors. Kidney patients with a high PRA are given priority on the waiting list. The higher the PRA, the more sensitized a patient is to the general donor pool, and thus the more difficult it is to find a suitable donor. A patient may become sensitized as a result of pregnancy, a blood transfusion, or a previous transplant.

[josie]

thanks for the info. I don;t know what mine is but I will call my transplant coordinator tomorow with that very question. Thanks!

[openboat]

It varies by region, age, blood type, pra level, etc., but I was told the average wait for me (GA, O+, 0%) was almost four years.

[petey]

...and, the wait time changes almost with each passing month.  When my Marvin first went on dialysis and on the UNOS waiting list (in March of 1995), the average wait time for an O+ cadaveric kidney donation in our region at his transplant center was 18 months.  He waited 5 1/2 years and never got a transplant from the list (though he did have 6 "standby" calls).  After his transplanted kidney (live donor) contracted his original kidney disease (IgA Nephropathy) after three years and Marvin had to go back on dialysis and back on the UNOS list, the average time for his blood type in our region at his transplant center was up to 6 years.  He's been waiting this second time for over five years (with 3 "standby" calls).

[paris]

Marvin and I are listed in the same procurement region and 6 years is what they keep saying to me.  Although, someone at UNC got one after 6 weeks on the list!!   We all keep praying that Marvin will get the next kidney and no more standby calls! We want the real thing!   

[fluffy]

i've been on the list for about 2 months now. Im content waiting. my girlfriend offered me one of her kidneys. but theres no way in hell i'll ever risk her or subject her to surgery. hope you get your transplant soon tho.