Sunday, July 29, 2012

False Alarm

Yesterday we got our first real taste at what it's like to be be an active transplant recipient!  We came so close to getting a kidney!  So close in fact that we were completely packed and ready to hit the road to Philadelphia!!  But obviously, it wasn't meant to be or else this would be a very different post!!

Yesterday morning, Bill, Stephen and I were out and about running some errands when I got a call at  noon on my cell phone from a 215 area code.  I instantly knew it was someone from CHOP and the adrenaline started pumping!! The person on the other end of the line was another transplant coordinator from the nephrology department, Kathy, telling us that a kidney had become available and she thought that Stephen had a very good chance at receiving this kidney.  The donor had been a very freak accident, but that they were a very healthy adult and the kidney was in fantastic shape.  Her exact words to me were, "if Stephen was my child, I wouldn't hesitate for a second giving him this kidney."  I think my words back to her were something like, "OH MY GOD!! This is amazing!!" We even joked about how Stephen had just been listed on Thursday afternoon and that she thinks we might have set a record for the quickest call!

She went on to explain that Stephen is currently fourth on the transplant list behind three other children.   One of the children is on the transplant list for a second time (they have already received one transplant previously) and might not be a match because their antibodies are higher than what Stephen's would be.  Meaning that it is harder for that child to find a match and Kathy thought that they might not be a match with this donor.  One of the other children in front of Stephen needs both a pancreas and a kidney, and she had no information about the donor's pancreas, so she wasn't sure that child would be a match either, and we didn't get any information about the third child.  And even though there were other children in front of Stephen, she advised us that this could be Stephen's kidney and to be ready to go when the time came.

She also told us that Stephen is listed for at least a 3 out of 6 antigen match.  Meaning that because we are continuing our search for a living donor and have started the kidney paired matching process, Stephen will only get a deceased donor kidney if it is a near perfect match.  We were told that the cross matching process would take a few hours, 3-4, so we wouldn't know anything more for a couple of hours.  But to go home, pack ourselves and Stephen up (since we hadn't yet backed a "to go bag" or anything), and be prepared to leave for Philadelphia if in fact Stephen was to get this kidney.

We hung up the phone and didn't really know what to do or think!!  First off, it was insane that it happened that fast!! We never ever expected to get a call that quickly!!  I think that might have been a record! And secondly, do you get excited, nervous, scared, or what?!?!  Stephen might get the kidney, but he might not.  I started out very excited, but after I had finished packing and the real waiting began, I got very frustrated and anxious.  At first, I was really convinced that Stephen would get this kidney, because Kathy sounded so sure that the other children wouldn't be matches.  But it was just so hard to believe that it would take over 4 hours for the lab work to be completed and until they determined who would get the kidney. From the time the initial calls are made to the donor to the time they prep for surgery, about 8-10 hours will elapse.  Which is kinda crazy! You'd think that they would need to get the organs into the recipient faster than that, but I guess not.

Right around 5 pm, five hours after the initial phone call, we heard back from Kathy, that all four kids were matches for this kidney.  It was definitely disappointing that things didn't work out, but also wonderful to know that one of the other kids was going to get the kidney.  And Kathy also told us that she thinks Stephen will receive a kidney sooner rather than later.  They put a strong preference to children that are very young like Stephen.

It was such an emotional roller coaster of a day!!  It's hard to be that upset about not receiving the kidney when you know that one family is devastated at the loss of a loved one, but then on the other hand, look at the other lives that are going to be saved!  And some sick child is going get the chance at a healthy life.  It's just such an amazing thing!  And I now can say without a shred of a doubt that I fully comprehend the importance of organ donation.  Whoever the donor was, is an amazing person and made such an awesome choice to be an organ donor!

And at least now we know where Stephen is on the list and we're one step closer to that top spot!!!
Click here to register to become an organ donor


  1. Our false alarm was devastating. We live 250 miles from our transplant center. We got a call for a liver, waited close to 24 hours for them to take Harris back. They put him under and then decided the liver was too risky (3 arteries). It was horrible. I grieve for that liver because it didn't get used (generally for livers you look for size match which means it was a child). 2 months later we got the absolute perfect liver and we are 9 months post transplant and doing great. Also, my uncle had one of the very first kidney and pancreas transplant almost 16 years ago and is doing great! Good luck on this highly emotional journey.

  2. I live in virginia, I'm a 32yr old mother, o+, and in the military. Let me know what I can do to help. My email is I'm proud of you lil soldier.