The I received a call but it didn't work out thread

[smartcookie]

You will get a kidney soon!  I just feel it! 

[MooseMom]

Oh man, I'm a wreck just reading about your most recent calls!

I'm really hoping you get to be number 1 in line for the greatest kidney ever very soon.  You have my very best wishes.

[Xplantdad]

Hi Iolaire....here's hoping for a call with an offer really soon


 

[iolaire]

Thanks for the well wishes and positive support. Honestly at this point I'm really only stressed when the call comes in and you know you are probably waiting for a kidney that will go to someone else. But it is starting to hit me just how long the wait is and that's for a simple non challenging match. I'm hoping that my story will help those random web visitors set their expectations. 

[MooseMom]

iolare, I have no doubt that your story will prove helpful to more people that you know.  Thanks for posting.

[iolaire]

Spoke my transplant coordinator because i need to schedule a stress test.  Few hours laster (noon) received a call from the on call nurse with an alternate offer.  Number five alternate this time for a KDPI of 16 (again) from a mid thirties patient (no drug use) with a head injury.  Told them yes to the cross match.  9 PM received the call back and for the first time I had a "slow match" and thus the surgeon was removing me from the alternate list.  So its getting close but we will see.  Still odd how on the days I talk to the center I get a call, guess i should call more often.

[cassandra]

.. Still odd how on the days I talk to the center I get a call, guess i should call more often.

Odd? Weird bordering scary. 

[iolaire]

.. Still odd how on the days I talk to the center I get a call, guess i should call more often.

Odd? Weird bordering scary. 

My Nephrologist came through last night and I mentioned that I'd get a call just after I talked to the center and asked if they have some sort of internal prioritization and he didn't think that was the case.  But he said if my premonitions are working to talk to the center than do it more..

[kristina]

Good luck to you iolaire in carrying on doing what you have to, in order to "get there" ...
... And the very best of good-luck-wishes from Kristina.

[kristina]

... Recently, just after I was being "hooked up" for my treatment, the nurses - all of a sudden - became very busy and took lots of blood samples from me and, after a little while, came back for more blood samples, telling me they don't know why there was a need for more blood to be taken  ... No one explained anything and the nurse who took more blood said, they don't know what it means, because another department requested it  ... I wish I could know what it all meant and hopefully it is a good sign for the future ... and perhaps I was being considered at that point as a just-in-case-extra-stand-by when the call came for someone else...
Nevertheless, these few hours of wondering certainly taught me how it feels when being "on edge" whilst anticipating and desperately hoping for the best   ... 

[iolaire]

Nevertheless, these few hours of wondering certainly taught me how it feels when being "on edge" whilst anticipating and desperately hoping for the best   ... 

Strange.   Good luck. 

It's been quite on my front. I've moved hospitals and have had no calls since. That last set of calls were nice but then you have to wonder when they will start back up.

[kristina]

Hello iolaire, I wish you all the best and good luck from Kristina.
P.S. ... and I wonder whose phone rings first ... 

[iolaire]

I received another kidney call last night at the end of my dialysis shift just before 7 PM.  This was the first call since I moved my listing to GW. They don't give as much information as INOVA. What I was told is it was a younger kidney and some sort of code that sounded like it was an OD patient. The kidney was from out of town. They needed to do the cross match and also a biopsy. I would hear back in the middle of the night. So this time it seemed like I was primary.  So after hurrying up and waiting and trying to get some sleep I received the next call at 4:40 AM.  The biopsy didn't look good so no kidney this time. 

[smartcookie]

You have had more calls than anyone I have ever heard of!  The next one will be it, though! 

[iolaire]

You have had more calls than anyone I have ever heard of!  The next one will be it, though! 

Yes, it feels like INOVA was calling when I was not a high level alternate, where GW Hospital waited until I was primary to call.  Honestly I thought I would have gotten a transplant years ago because I got my first call about a month before D.  Looking back I should have gone on PD, or done home Dialysis, both of which I thought would be my preference but I skipped because it felt like I was close to a transplant.  At this point its sort of mute because I'm at the average 5 year wait point so I should be getting close for real.

[Xplantdad]

Here's hoping for something soon Iolaire!

[justagirl2325]

Yes, here's hoping it's very soon.

[cassandra]

Good luck and positive vibes from across the pond Iolaire

   

[iolaire]

Life on the transplant list - received a call 3 AM on Monday morning.  I came up as an alternate for a younger donor.  The nurse said would run the blood and get back to me at about 7 AM.  I'm still sort of surprised at the difference in information provided between INOVA and GW - where INOVA gave lots of details on the kidney quality and also asks formally do I approve for them to do the blood cross match - GW basically just says the donors age and then talks about the next steps, they don't formally ask to run the cross match. After that was a restless sleep with lots of transplant center waiting room dreams.  The call at 7 AM was another hospital took both kidneys.  I was still backup but I could eat and they should call me later in the day just to confirm that I was not needed as an alternate.  Of course I never received the follow-up call.  But it’s getting close, hard to say when will be the real day but should be sometime this year.  Thanks to the donor's loved one's who likely agreed to move forward with transplantation.

[Tora66]

I received a call and was admitted to the hospital to prepare for transplant in October of 2016. There was one person ahead of me who ended needing both donatated kidneys. That was the only call I received. Been on dialysis 3 years and 9 months.

[okarol]

Wow that's a  lot of missed opportunities! Sounds very frustrating.
Jenna has waited 5 years, 3 months. She got her first call a couple of months ago as 3rd in line for a high risk kidney. First 2 people took the kidneys.
This will be her 2nd transplant, 100% PRA.
Sucks being 31 years old and waiting so long, but I know other people who have waited much longer, or never get a chance to join the waiting list.
You must have very low PRA to get so much activity. Best wishes that the next one is it iolaire.

[iolaire]

Looks like I'm done with this thread!  See My transplant life has started for the next chapter.

[smartcookie]

 

[kristina]

Hello iolaire,
You have tried so very, very hard and I am so happy about your success !
Take great care and please let us know how "things" go.
Best wishes and good luck for the future from Kristina.

[AshtonsMuse]

   

Very happy for you!