False alarm kidney call

[Naynay99]

Hey. So Saturday I got a call about a potential donor at one of my tx centers. Total surprise- and I didn’t get the call right away bc I fell asleep without charging my phone.  Woke up to see message- called and was shocked that they might have a kidney for me.  Said bc I was such a good match it bumped me up the list, but there were 2 ppl in front of me. 

Anyway they gave me the information about donor- it was a 20 yo iv drug user so was considered high risk even tho tested negative for hiv and hep. 
Anyway, they told me they needed to monitor kidneys bc creatinine was a little high (patient was still on life support).  They said they would call back the next morning. 

They finally did, around 1130 am, to say the kidneys were accepted by the ppl above me on the list.  Even though I knew it was a long shot, the disappointment and let down hurts. . 

And I sort of wish I hadn’t told my mom or friend about the call until it was almost a definite, but I was so surprised and needed to find a ride if they did call and said to come in.  But Having other ppl excited and then disappointed for me just makes me feel worse.   My friend said he’s glad I told him and that I need a support system, but I would’ve felt better if no one else had gotten their hopes up besides me. 
I am bummed, especially as I have been completely overwhelmed trying to schedule a zillion tests and appts as I am at the point where I am doing re-evaluation appts for my tx centers.

The call was a complete surprise, out of the blue.  But it gave me hope, which can be a dangerous thing...   I don’t let myself get too hopeful anymore like I did when my brother offered to donate, as I know that the disappointment can be soul crushing. 

I suppose the ppl who got the kidneys needed them more than I, and thinking about the poor guy who ODed makes me sad.   I am no worse off than I was before I got the call and if it had never happened it would’ve been a regular weekend so I’m trying to look at it like that.  But even tho I tried to be realistic and not get my hopes up, I did and now I feel like crap. 

Anyway, there is no qs here. I’m just venting a bit. 

[MooseMom]

I doubt it would be any consolation at all to know that what you've experienced is all so familiar and, well, common.

Of course you are disappointed.  Of course hope hurts if it is not fulfilled.

It's at this point where we will all tell you that there is probably a better kidney out there for you, which actually may be completely true!  Frankly, this one sounded a bit dodgy.

One piece of good news is that you are on the their radar.

It is hard to know what would have made you feel better, telling your friend or not.  Your friend has a point in saying that he was glad you told him and that you might need some support; that was very kind of him.  But when you share your excitement, sometimes you feel responsible for their shared feelings of disappointment, and none of us want that extra burden.  So, I can understand why you feel the way you do in that regard.

Those re-eval appointments and test are a real bummer, that is so true.  I hope you get through them swiftly with nothing but good results.

Best of luck to you, naynay, and I hope that venting has helped.  We really do get it.

[Simon Dog]

1.  Others "needing it more" have nothing to do with the place on the wait list.  Region; time on list and match do.

2. If you got the call your are close.  Close enough to develop OCD regarding keeping you phone charged.

3. Do not worry about this HIV and Hep.  Hep-C is curable now in 95%+ of cases (about $100K of drugs in the use, about $3K or so in India), and the chances of getting an HIV kidney are about 1/2000 last I checked.  NAT (neucleic acid testing) catches HIV exposure within days, not weeks like the old test.  There are risks you can't avoid - rabies is one (happened to all recipients from one donor), then there is the guy who got cervical cancer metastasis.

4. The odds are probably better with a 20y/o OD than with a 50 y/o clean liver (who probably has a clean liver)

5.  Know about KDPI.  Ask for the number when getting an offer.  Talk with your MD in advance about what KDPI is "good enough" for you, and what the best KDPI you qualify for (once you reach 53 or 54; less with certain conditions; you are not eligible for anything <= 20).

[Naynay99]

Thanks Moose Mom. 
Simon dog-
Yeah, I’m fine w a “high risk” kidney.  A kidney of a young drug user is most likely pretty healthy otherwise. 
(I’m also on my other tx center’s Hep C + list as they are now doing tx with hep c + kidneys to hep c - patients and then curing the hep c.)
The KDPI of this kidney was 21%.
I don’t know about being close to getting THE call, this seemed like a fluke call bc of close match (I’ve only been on this centers list for 1 year now) but who knows. 
Anyway thanks for the info.

[iolaire]

Naynay99 Congratulations on being in the call received stage. I hope you period of receiving alternate calls is not the 3.5 years I experienced.

The stress of the preparation and then let down after the calls is serious. It might be beneficial to you that others know about the stress. I doubt anyone understands what it’s like when you tell them about it. But maybe they will understand some living it with you.

[Simon Dog]

The KDPI of this kidney was 21%.

I wonder if the allocation formula allows better KDPI if you accept hep C+.  Find out, and know what you KDPI cutoff is.  There was a recent paper concluding that HepC+ kidneys extend the lifespan of recipients.

I don’t know about being close to getting THE call, this seemed like a fluke call bc of close match (I’ve only been on this centers list for 1 year now) but who knows. 

Wait time transfers, so you may have had more than one years credit in the allocation.

I got a kidney on my first call - 6 years, 3 months, 5 days after starting D.