Tuesday, July 24, 2012

LISTED!!!

Well the old saying, "One door closed, another one opened," certainly held true today! We got awesome news from Stephen's transplant team at CHOP today!!  We now have not one, not two, but three transplant options now!!!  We went into today with only one option available to us; a non-related living donor.  But we ended the day with two additional options; cadaver kidney or a paired kidney exchange.

A cadaver kidney (a kidney from a person who has passed away and is an organ donor) has always been part of the thought process, but it's now a reality because Stephen was activated on the transplant list today!!!  It's a huge accomplishment!!!  It's taken a lot of blood, sweat, and tears (literally!!) to get Stephen big and healthy enough for this point, and we finally made it!!  Stephen has been listed as inactive on the transplant list until this point because we were still working out any bladder issues and we had found a potential donor.  But since completing all the bladder tests, the transplant surgeon was happy with the results, so decided to go ahead and activate him.  This essentially means, that we could get the call at any time that there's a perfectly matched kidney for Stephen.  Tomorrow, next month or two months from now.  Anytime!!  Although life will change a bit now not being able to travel more than a few hours from home, the thought that we could get a phone call at anytime is so exciting!

Our other option, paired kidney exchange, is just as exciting!  From the very beginning, we knew neither of us were Stephen's blood type, but had high hopes that we would be able to donate one of our kidney's to a family in need of a kidney that was either A or B blood type; and they would donate an O kidney to us.  But when we went to CHOP last November for our initial meeting with the transplant team, we learned that CHOP was not a participating hospital in the paired kidney exchange.  But we found out today, that very recently, CHOP had been approved as a participating hospital!  Apparently it was a money issue that precluded from participating before.  You have "buy into" the program, and the funding just wasn't available...until now!  So both Bill and I gave them a blood sample while we were there today to start the process of determining if we would be a match for another family at CHOP or the University of Pennsylvania, or one of the other participating hospitals.  This is also so huge for us!!  In a perfect world, this would be the choice we would choose.

But while we wait on the transplant list and do the medical work-up for the paired kidney exchange, we will also continue our search for a living donor.  The transplant team still feels that a living donor will give Stephen the best chance and will hopefully last him into his early adult life.  So for those of you still interested in being a donor, you should hear back from JoAnn very soon (and if you emailed me and haven't heard back from me I promise I'll will respond ASAP!!).

Once again, life has proven to be a giant roller coaster ride!  We went from having little hope of finding a living donor to now having a multitude of options!  It just goes to show that there is definitely someone out there looking out for my little Superman and answering all those prayers!

I have to say, the outpouring of support and love for Stephen is just mind blowing! Since creating the Facebook page on Saturday, we have gotten over 188 likes and I've received countless emails from people wanting to be tested as potential donors for Stephen or just saying how much they are touched by Stephen's story.  JoAnn told me today, that she received 5 phone calls regarding Stephen yesterday alone!  It's just unbelievable!  The generosity and kindness from everyone is overwhelming.  I wish I could come up with something better to say than "thank you" but I'm at a loss for words.  I hope that one day we'll be able to re-pay all of the love and pay it forward to others.









5 comments:

  1. Dear Lindsey,
    This is absolutely wonderful news!!!! Uncle Dick is out flying right now--I am so excited I can't wait until he lands to tell him the news. I am going to drive out to the airport and use their unicom radio to try to contact him and tell him--if I can't, I'll just wait until he lands....I am just soooo excited!!
    We will keep you in our thoughts and prayers....
    Love,
    Aunt LuAnn

    ReplyDelete
  2. So exciting!!!

    ReplyDelete
  3. This is awesome news. It's weird that I've never met you guys but I'm crying tears of happiness right now. 5 people called in 1 day? Amazing... He is 1 lucky kid! I'm praying that you keep getting good news.

    ReplyDelete
  4. Amazing news! So excited for your sweet family!

    ReplyDelete