Friday, August 24, 2012

Poked, Prodded, and Tested

Lots of things have been happening in our house over the past couple of days!  Bill and I actually got back yesterday evening from an overnight trip up to Philadelphia to complete our testing to be entered into the National Kidney Donor Registry.  The testing was part of the process so that we could be part of a paired kidney exchange, where another donor would give Stephen an O+ kidney and in turn, either Bill or I would give them an A+ kidney.  It's all very exciting because this is what we had hoped we could do all along!! 

Originally when I got the call last week, they were going to test us both at the same time.  Then on Friday, I got another call saying that only one of us could do the testing, so we decided that Bill would be the first tested, and then if something showed up in his tests that indicated he couldn't be a donor, then I would do the testing.  But when we got to there yesterday morning, they decided to test us both since we live out of town.  The testing and the donor work-up and surgery all take place at the University of Pennsylvania, which is directly adjacent to the Children's Hospital of Philadelphia (CHOP).  And just like CHOP, UPenn didn't disappoint!!  The place was unreal!! Not only was the building itself super cool, but everything worked like clockwork!

We started off at 7:30 AM with registration, then moved to blood work around 8AM.  There, they took about 20 tubes of blood from each of us.  It was a crazy amount of blood, but the phlebotomist at the lab, was a gem!  She worked so fast and kept your mind off the needle and everything that it was a breeze!  After that we had to do a 2 hour glucose test.  For those that don't know, it requires chugging a small bottle of a syrupy, sugary, orange juice-like drink.  Then waiting an hour and having another blood sample taken, then waiting an additional hour for another blood sample.  But in between blood tests, we met with the transplant coordinator to go over the "official" paperwork, did an EKG, met with social work, and then had a chest X-ray.  In the end, we were completely done by 11:30 AM and off to have lunch...finally!  Bill had to fast overnight Wednesday night into Thursday morning and I felt bad eating in front of him, so thankfully I fasted too!

Since we had to be there so early in the morning on Thursday, we drove up Wednesday night and spent the night at UPenn's Transplant House; UPenn's equivalent of the Gift of Life House.  It was very nice and located within walking distance to the hospital which is really nice.  The house itself is smaller than the Gift of Life House with only 12 rooms, but our room was huge, and it had a really pretty outdoor atrium/courtyard in the middle.  

Both Stephen and Mabel had a sleepover at Grandma and Grandpa Schwartz's house Wednesday night and both loved it!  And oddly enough, the road trip for Bill and I was like a micro-vacation despite spending half the day in a hospital.  It was nice just to hang-out together with no responsibilities except for ourselves.  It's sick, but it's true.

We also found out when meeting with the coordinator, that there isn't currently a swap for us; meaning an A+/O+ match isn't currently available, but the typical "wait-time" for a swap or chain is about 6 months.  Which is pretty encouraging.

If you've been following our story for a long time, you might be thinking...."wasn't Bill B+ and Lindsey A+?"  And you'd be correct.  All along, we thought Bill was B+ based on his blood work that was done when Stephen was in the NICU (the test result got buried in Stephen's hospital records, so we were going on memory).  But during our last visit to CHOP, they took some blood to double check our blood type and it turns out that we're both A+!  It's funny because as we were heading to the lab that day, I said to Bill, "wouldn't it be crazy if I some how screwed this up and you were in fact O+?!"  It'd be a terrible mistake, but the best-worst mistake I ever made!!!!  I got a call a few days later from CHOP saying he wasn't B+, but A+ and had a pretty good laugh about it!

So what does all of this mean??  Well...we're still testing non-related living donors (wonderful friends, acquaintances, and complete strangers who have offered to be donors for Stephen), Stephen's still listed on the donor list (we could get a call at any moment), and now we're waiting for a kidney swap as well.  So we're hitting this thing from all three angles!  And whatever happens first, will happen first.  We're still hopeful that this transplant will happen before then end of the year, and with all of our options out there, I'm positive it will.

And what's even more of Stephen's kidney's friends, Faith, who is about two months younger, received her gift of life from her Mom, Andrea, just a few days ago.  They live in Seattle, but Andrea and I became friends over email back when we were both pregnant.  I probably talked about them way long ago!!  Faith got on the escalated transplant tract after having to be put on hemodialysis a few months ago.  So it was much needed!  But both Faith and Andrea are doing great!  Faith has done great so far and the pictures I've seen are just amazing!! You'd never know this darling little girl, just went through a major surgery.  It's so encouraging for us to see and I can't wait until it's our turn!!!!!


  1. Yay! Keeping my fingers crossed for you!

  2. Hey Guys,
    This is great news!! Glad to hear that you enjoyed your time away, even if it was brief. Keeping you in our thoughts and prayers....
    Aunt LuAnn

  3. So happy to hear that you guys have started the testing. Amazing the of blood they take to test for all that stuff. I pary every day to hear that you found a match. What a road our munchkins have been down.