Sunday, March 4, 2012

Heading Home

Bill and I are sitting in the Orlando airport right now waiting for our flight back to DC. We had a really nice trip and reality is setting back in that we have to actually return to reality today. In a perfect world, we would scoop Stephen up and head somewhere warm and tropical and continue our vacation. But...we need to return to work and everyday life. All kidding aside, the trip was fun and relaxing and as far as we know, everything back at the ol' homestead went great! Every call and text indicated that the Grandma's were having a great time babysitting and all the medical stuff went off without a hitch. They went to the park, out to dinner, and took him to the doctor's office to get his blood pressure taken (our machine broke right before we left) amongst other things, so I think our trip went really great!!

Right before we left for Orlando I spoke with the transplant coordinator at CHOP about how things were going with Stephen's testing and our search for a donor. As far as Stephen goes, we had pretty good news. He has some fairly common antigens, so that should hopefully make it easier finding a good match (great news), but his blood work showed that he hadn't responded to all of his vaccinations. Not all of his blood work had come back when we talked, so once they come back, the team would consult with an infectious disease doctor and determine if he could just get the vaccines again, or what the result would be. I think the vaccines in question were his MMR (measles, mumps and rubella). So I'm waiting on more info about all of that.

We also decided that we were going to move forward and start the donor matching/testing process for the 6 people that have contacted Jo Ann about being a donor for Stephen. We (and I think the doctors too) have been amazed at the outpouring of support and interest in donor matching for Stephen. We didn't want to go too crazy right off the bat with testing, so we figured we would start the testing with those individuals, and see if any of them are a suitable match, and then go from there. We didn't want to go crazy and get in trouble with the insurance company by testing an unusually large number of people. It's dumb we have to think about that, but it's the reality of the health insurance world.

So far as best I know, one person's HLA testing came back and they weren't a match for Stephen. It came down to antigen matching, not blood type. It was a bit of a reality check for me because I hadn't really thought much about the fact that some, if not all of the people that want to be tested, could end up not being a match. I was just so excited at the number of people that wanted to be tested, that I just hadn't thought about that at all! But I'm hopeful that luck will be on our side with this and someone will end up being a match. And in the event that none of the 6 are, we'll keep asking and using the Internet and social media and word of mouth to keep up the search for a donor. I'm going to work hard at keeping the blog updated so that people know where we stand in the donor process and continue to keep Stephen's story out there and maybe, just maybe, someone will get a hold of our story that could really send it into the stratosphere and raise even more awareness for kidney disease and organ donation! Did you know that March is actually National Kidney Month!?!? :)


  1. Dear Lindsey and Billy,
    'So glad you folks had a great time!! You deserved it!! I am sure that Grandma and Mimi had a wonderful time too. Without a doubt, Stephen will have his big smile waiting for you when you return.
    We know, in our hearts, that a donor will be found. We will keep those prayers coming your way.
    Welcome Home,
    Uncle Dick and Aunt LuAnn

  2. Nana Schwartz and Mimi Noll had a wonderful time with Stephen. Stephen played, went swinging, practiced standing, learned to eat crackers, got new teeth poking through his gums, slept through the night all week, and generally was spoiled with Grandma Attention! All the "medical stuff" went well with two sets of eyes watching at all time. We're just thrilled that Bill earned this wonderful trip with all his hard work, and you two has some fun and relaxing times. Love to all,
    Mimi (Kathy)

  3. Linds-
    What about reaching out to your alumni associations or alumni magazines about the search for a match. It's a little bit public, but you could reach a lot of people. Also, I think people are more inclined to help when they feel connected to you, and as you are well aware alumni of those schools have a special bond! Wishing you all the best in your search! Love, Colleen

  4. Hi Lindsey! So glad you had nice get-away to Florida. I am not sure if this helps from an insurance perspective or not but CHOP used my antigen results from The Bone Marrow registry from swabbing I had done a few years ago. I didn't have to redo swabbing for CHOP so if others out there have done swabbing for any other donor programs those results can be used, thus maybe saving some insurance money. Just a thought! Tiffany