Friday, April 5, 2013

Very Disappointing News

I never imagined that I'd ever be saying, let alone writing these words, but Stephen's transplant has been postponed.  I got the call Thursday afternoon around 2:15 PM from the transplant coordinator and the nephrologist that they were postponing the transplant.  To say I was upset, would definitely be understatement.  Instead of sitting on the computer Friday night telling you all about this, I should be frantically packing trying to figure out how we are going to fit 6 weeks of gear and clothes into one car.  But alas, I'm here trying to come up with the appropriate words to describe what happened and how we feel.

I'll try to explain the reasoning behind this in as few words as possible.  Basically, Stephen contracted a virus called Epstein-Barr virus (EBV) in November.  It's what caused the unexplained fevers and sent him to the hospital on two different occasion last November and December. EBV is essentially mono. We've talked with all of his doctors, many times, about the EBV and we were always under the assumption that it was actually a good thing that Stephen contracted EBV before transplant and not after and he was producing the appropriate antibodies to fight it off.  Never once was there a  conversation between any of the 7 or more doctors checking Stephen's immune system that if he didn't actually test negative for EBV, he couldn't get a new kidney. 

The bottom line is that Stephen is still positive for EBV and therefore the doctors all agree that it would be too risky for Stephen to receive a transplant; they would have to lower his immunosuppression to fight off the EBV, leaving him extremely susceptible to rejecting the new kidney among other very bad things.  Stephen's most recent blood work suggests that his EBV "levels" are at 372 and he needs to be at or below 200 for him to be considered negative.  So the plan going forward is to check him each week and as soon as he hits that magical number, they will reschedule the transplant. When that will be is totally unknown.

We completely understand that they are doing this in Stephen's best interest and safety and we'll always do what is best for him, but it was devastating none-the-less.  We had prepared ourselves in so many ways for this and then to have it all squashed in an instant was horrible.  And then to think about how Stephen's donor, Kristin and her family were putting their lives on hold for us and how this might affect them sucked even more.  It was just terrible all around!  Oh and I can't forget the lease we signed for the apartment, the furniture I shipped to Philadelphia, all of Stephen's medical supplies that had been delivered Thursday morning to our apartment building, and the fact I hadn't ordered any of his supplies for April because he wasn't supposed to need them!  And even down to the little things like the fact I had pretty much completely emptied my fridge for the trash pickup on Thursday morning, said my goodbyes at work and canceled the newspaper.  It was just a huge mess.

But....we've gotten everything pretty much straightened out with the whole logistics of the move and Bill and I are actually going to drive up to Philadelphia this weekend to pick up the medical supplies.  And we can only hope that this is a minor setback and by this time next month, we'll be back on track for transplant.  The doctors feel that Stephen is adequately fighting the virus and his levels should continue to decrease fairly quickly.  So here's hoping they're right!

Yesterday was definitely a really tough day, but today was better, and by Monday this will be just be a blip on the radar screen.  And like so many of the really bad days we've had through this journey, we'll be able to look back in a few months and say, "Can you believe that happened?!" as we put Stephen to bed without any of the tubes or machines keeping him alive.  We've gotten through some really tough bumps in the road, so I know we'll come through this one too.  But for now, it's feels good just to climb into bed with a book and try to sleep away the disappointment.



  1. So sorry to hear this news. We are all praying and thinking of you guys. Sending lots of hugs. Xoxoxox Carrie, Tom , Tommy, CC and Quentin

  2. Dear Lindsey,
    This was devastating news for everyone! We can only begin to imagine your disappointment. But it is only a postponement...not a cancellation. Stephen will get his kidney and we all want everything to be perfect going into the surgery. Like you said..."it is just a blip on the radar screen". God has brought Stephen this far and he will continue to bless him. Our prayers go out to you and also to Kristin as we know disappointment in also in her heart.
    Aunt LuAnn & Uncle Dick

  3. You are the best mommy and daddy.