Got my first call today

[tigtink]

I received my first call about a kidney today. It came from University of Toledo, which surprised me because I have only been on their list for 9 months (compared to over 3 1/2 years at UW Wisconsin and U. of Michigan). The donor was a middle-aged woman still on life support with a creatinine level of 1.1 and a KDPI score of 84%. I was 4th in line for it and they wanted me to drive to Toledo (two hours from here) to get worked up. I declined the offer because of the KDPI score. I am not on dialysis and my last creatinine level was 2.7, so it didn't make sense to me to consider a score that high.

It was a great trial run though. I was in water aerobics class at the Y. I had my phone with me and had checked it at 10:00. The call came in at 10:06. Right before class let out, at about 10:25, a lifeguard came and got me. By then they had left two messages, called my sister and my friend Kathy, and Kathy called the front desk at the YMCA. I ended up calling the coordinator back within 20 minutes but not before half my family and friends had been put on alert!

So that was my excitement for the day. The wait continues. It is exciting, but then at some point it sinks in that a woman is nearing death and a sadness creeps in when I think of her family. Plenty of mixed emotions.

[iolaire]

Congratulations!  Did you transfer your time?  If you transferred your time maybe it's going to be soon. 

FYI it took four years of alternate calls for me and immediately after transferring to GW the calls dropped off making me feel the old hospital called alternates more often.

[smartcookie]

Awesome news that you even got a call!  Your call will come soon.  Just keep the faith! 

[Simon Dog]

I declined the offer because of the KDPI score.

Probably a smart move.   My MD told me that due to his evaluation of my age, general health, and how I am doing on home hemo, to decline anything above 60.

[tigtink]

I did not transfer my time to Toledo so my wait time there is only 9 months. I did not expect to get a call this soon.

Simon Dog, I will ask my nephrologist when I see him on the 14th. I find the whole KDPI thing confusing. One transplant coordinator tried to tell me there was little difference between a 21% score and an 85% score, and that the real difference is a score over 85% in terms of how long the kidney is expected to survive. I'm not at all convinced that is true. The stats tend to divide it into 3 groups: 0-20, 21-85, and 86-100. I could not find a lot of guidance about differences within the 21-85 range. I seriously doubt I would have been called if the KDPI had been 35. I suspect I was called because many others with longer wait times turned down the offer. I just figured since I am doing so well without dialysis and have 3 1/2 years accrued with WI (my first choice) I could afford to be a bit choosy about the quality of the kidney I accept and where I have the transplant done.

Who knows though. A lot of it is really a roll of the dice. I'm lucky that I can afford to wait.

[Simon Dog]

One transplant coordinator tried to tell me there was little difference between a 21% score and an 85% score, and that the real difference is a score over 85% in terms of how long the kidney is expected to survive.

The papers I have read, and addvice from my nephrologist, suggest otherwise.

As to not being offereed a 35 - you are supposed to be in the "equal running" for anything above a 20 if your EPTS is above 20.  It's an either/or thing; the are only two levels of qualification: You qualify for an <=20 or you don't.   

I just figured since I am doing so well without dialysis and have 3 1/2 years accrued with WI (my first choice)

How did you get your wait time to start without being on D?   Did you have a low GFR to qualify?

[tigtink]

I wanted to thank you, Simon Dog, for all you have shared about EPTS/KDPI over the past few months. You are the only one I know who has talked much about this. When the call comes you have to make a decision on the spot with only limited information. (I was standing by the pool dripping wet when I called the coordinator back!) I didn't even think to ask questions about how good a match it was because I was caught off guard. I should have already discussed KDPI with my nephrologist. I guess we get lulled into the very long wait and forget to be prepared. Plus, until the first call comes in, you really don't understand the process.

I agree that there has to be a difference between 20 and 84. Common sense says there would not be some magic cutoff at 85. I hope my nephrologist is as helpful as yours.

My GFR has been under 20 for about 7 years now, so I could have (and probably should have) been listed before I was. I've had my fistula for 4 years now. That was the jolt that broke through my denial and got me started on the listing process.  I never would have predicted I would still be at 17% without dialysis at this point. So much of this is totally unpredictable. The challenge is always to make good decisions based on incomplete information and multiple possible outcomes. I've learned to be flexible and willing to shift strategy when warranted.

[Simon Dog]

. I should have already discussed KDPI with my nephrologist. I guess we get lulled into the very long wait and forget to be prepared.

The fact that transplant teams, and nephrologists, do not proactively discuss this with patients is a failing of the system.

My neph went home and read up on papers on KDPI and survival rates before he got back to me with an answer.

I hope my nephrologist is as helpful as yours.

Try asking directly "what is the maximum KDPI you think I should accept, and should I take a CMV+ organ?" (the  later is relevant only if you are not already CMV +)

The transplant teams have a "don't worry, let us do our thing" approach.  As my nephrologist says, if you go to a barber, you're getting a haircut.

My GFR has been under 20 for about 7 years now, so I could have (and probably should have) been listed before I was.

Check with your team.   You might be able to have your wait time adjusted to start at the point your GFR dropped to the cutoff.  Not sure about that one though.

[Tora66]

I got the alternate call this morning. Fouth in line. Haven't heard anything back now some six hours later. Fourth in line doesn't sound promising. Second call. First call was last October. Four years of dialysis this October 13th.

[iolaire]

Good luck and try to keep the stress level down. My alternate calls had fairly poor communication and lots of stress.

[smartcookie]

Tora, it will come.  Just keep believing and doing what you are supposed to do.  I can't imagine anything more stressful then waiting for a call for an organ.  You guys really amaze me here!

[Simon Dog]

One transplant coordinator tried to tell me there was little difference between a 21% score and an 85% score, and that the real difference is a score over 85% in terms of how long the kidney is expected to survive.

The literature suggests otherwise.  Starting point https://www.ncbi.nlm.nih.gov/pubmed/27616757

Organ allocation spans multiple xplant centers.  There is a conflict of interest when you are offered an organ, since your declination will very likely mean the center offering it to you will not get to do the transplant.

[Tora66]

Thanks for the advice. Hope you are doing well, iolaire with your new kidney!