The never ending kidney call

[Naynay99]

Hey. So I got a call Sunday nite about a possible kidney.  Since then have been getting updates every 8 hours or so.  It’s been a long 2 days. 

On the way home from work I finally got the rejection call that the person above me was getting the kidney.   
Then like an hour later I got called back, told that the person ahead of me turned it down and I would have to go to the hospital in the next hour or so.   
So after calling my mom and friend back, we are finally allowed to start getting excited.  Thinking I would be getting a kidney in the AM. 

But then I get a call back that they screwed up and somehow failed to note that there was still another person ahead of me and I am only the backup. 
 So I am now waiting for them to do a cross type for the person ahead of me.  If they don’t take it, then I’m back in.  They said I should hear in an hour and were very apologetic about the mistaken communication that I was next on the list. 

Jesus Christ.  What a roller coaster. 
Possible kidney.  Then No kidney for you.  Then the kidney is yours.  Then oops sorry, no it’s not.  I am mentally exhausted.   Trying not to get my hopes up again so I don’t feel the crushing weight of disappointment but my friend was ready to drive me to the hospital.   The tx list is an intense place to live.   

Will let u know what happens but don’t have a good feeling about it anymore.   

[kristina]

Hello Naynay99,
Going through this latest experience, even though it must have been very frustrating for you to go through all this on-and-off-experience, you should be nevertheless pretty much on top of the list and I wish you the best of luck for the next time. Take care. 

[iolaire]

I'm glad you got a call.

Jesus Christ.  What a roller coaster. 

Yes.  Lets hope the roller coaster ends abruptly soon. 

For me it was a roller-coaster of being alternates for 3.5 years.

[Naynay99]

Well I think I’ve recovered from that ordeal.  Whew!  What a whirlwind of emotions.   I get being a backup and that there is a big chance of not getting a kidney then.  But when they called and said I needed to come in, I really thought the kidney was gonna be mine. 

It was so crazy.  First being called back after I thought it was over, and told that the primary center turned it down and I would need to go to the hospital in the next hour, and then called back 40 minutes later saying that was a mistake and there was still another person ahead of me was pretty crummy.   Having to call my mom back and tell her it was all a mistake and I really wasn’t getting the kidney afterall was pretty tough. 
The coordinator was very apologetic and said she filed a complaint with the opo, how such a thing shouldn’t have ever happened.   

 I get it that errors happen, but I packed a bag and got a ride set up and my mom started looking for flights.  For like 35 minutes we really thought this was gonna be it! 

Ah well, I suppose it has kept things exciting anyhow.  Recent life has been anything but Dull.  And maybe the next call will be easier after living thru this.  Or not, who knows…

It just sucks.   It would have been the perfect last minute pre-emotive tx, as I am scheduled for surgery for my PD cath next week.   

All I can do Is wait for the next call,
Which will hopefully be sooner Rather than later.   Take it easy.   

[SooMK]

I suppose we'd have to hear from someone on the other end of this to get their perspective but sometimes it makes you wonder. I hope the real call comes soon.

[MooseMom]

Oh, jeez, that's unbelievable, Naynay!  I am so sorry that you've had to endure this.  It's particularly frustrating when someone makes an error, an error that is not in your favor. 

That said, though, I gratified to hear that your coordinator was so apologetic.  I'm sure she was appalled by what happened, and I'm happy that she filed a complaint.  Quite right, too!  What happened to you really is inexcusable, but you're right in saying that people make mistakes.  I hope the person who made this particular mistake that caused you so much disappointment thoroughly understands the consequences of the error.

I hope your surgery for the PD cath next week goes well.  You take care of yourself, OK?   

[iolaire]

I get it that errors happen, but I packed a bag and got a ride set up and my mom started looking for flights.  For like 35 minutes we really thought this was gonna be it! 

Ouch adding in flights and long distances just adds to the stress.

[Simon Dog]

If you got the call as a secondary, you are close to the top and you remaining time will probably be in months rather than years.

If someone turned it down, it probably did not have a great KDPI so you may get a better one (but will probably never know)

I was #6 when they called me, but did not know that until later.    4 ahead of me did not pass the final donor/recipient blood mix test, and one was ill and not able to be surged.

I don't think my center (Tufts Boston) primed alternates - they never mentioned it, and I never got an "alternate" call before the actual offer.

If you have not already done so, consider learning about KDPI and have a talk with your doc about how good a kidney you should hold out for.  If you turn one down, you do not lose waiting time and do not get put on a shitlist.   I know my doc has, on occasion, advised patients who call about an offer "turn that one down, you should wait for a better one".