Monday, April 22, 2013

When A Door Closes, A Dad Knocks It Down

11 Days 'Til Transplant

And the countdown has started. Crrraaazzzy.  Also, it's kind of weird that I started the countdown for days-til-the-wedding on this blog at 100 days, and this countdown starts at 11 days.  Just sayin.  

It didn't dawn on me until a few days ago that I'd probably left quite a few details out about what exactly happened with my sister, Jocelyn.  If you've been reading this blog since January, you'd know that originally, for the past 10 years, we've all been telling my younger sister Jocelyn (20 years old) that she was going to give me a kidney someday.  It just made sense to us. She's my sister; she's young and she's healthy. And she's one of my best friends so this would have made for a pretty great movie I think.  Oh...actually that movie already came out. And we weren't in it.  Anyways, Jocelyn was like "Neo." The one.  The one who would fix everything.  And I always thought, "Wow, God, Thank you.  I knew there was a reason you gave me a sister who steals all my clothes. It was so that I could have her kidney.  Thank you." But no, not really, at least not yet. 

Jocelyn was 90 percent done with her evaluation to be my donor.  She was all set to meet the surgeon and she passed all the physical tests.  In her meeting with her nephrologist, they made a discovery related to a little test I did 10 years ago at the National Institute of Health.  When I was first diagnosed with FSGS, my pediatric nephrologist recommended to my parents that we seek out a second opinion on treatment options, just in case there was anything besides thousand-milligram steroid treatments that we wanted to try. Before I started that treatment we took a visit to NIH to participate in some research studies on FSGS to see what was out there as far as treatments.

Last year, I went back to NIH, to get a second opinion on treating kidney disease, since my stage of renal failure had progressed to stage 4.  During that meeting with the same researchers, they revealed that from the blood I gave 10 years ago, they discovered I was a carrier of a special gene.  Their research has shown that people with that "special gene" are at a much higher risk of developing kidney disease. All of this research is being done  so that a cure can eventually be found.  

Fast forward to about two months ago, at my sister's meeting with her nephrologist.  He told her that he discovered my participation in the research at NIH, and the results (me having the gene) . He was worried because we're sisters. Basically, there's a 50/50 chance Jocelyn could have that gene as well, and that if she donated, she could develop FSGS too.  Because of that, Jocelyn's nephrologist would not give her the approval to donate, until she's had her own gene testing done as well.  

Of course, we were all DEVASTATED, for a number of reasons.  We didn't want to hear that Jocelyn had the gene, or was at risk for FSGS.  And also, this meant that I would have to start making preparations for dialysis.  A whole month and a half wasted.  A month and a half of kidney function that I would never get back.  That I haven't gotten back.

So, what did this mean?  What's happened since then? The doctors suggested that my dad try out to be my donor.  To us this was not really THAT ideal because he's older.  He's not as "fit" I guess you can say as he was in his 20s, like Jocelyn is.  And also, because of those two things, who knew what kinds of things were wrong with him. This is what we thought.  We were all wrong.

My dad is SO HEALTHY.  Healthier than me, actually!  And his age isn't going to be a problem.  My dad stepped up to plate, passed all the physical tests with flying colors, changed his diet to low sodium (like me) and was approved to be my living donor last Wednesday, April 17.  On his birthday.  

I can't imagine what that feeling must be like for a parent.  I was telling a friend of mine on Skype the other day that I just realized that people die if their kidneys don't work.  My dad is SAVING MY LIFE, really.  .  And I'm not sure if he ever expected to have to do this with one of his children.  

So hey Dad, I know you only read this some of the time but I love you. And I'm blessed/lucky/fortunate to have you as a dad, and I definitely do not deserve a dad like you. Especially all those times that I was...a pretty bad kid.  But I'm so thankful for God's grace, and that He saw fit to give me a great father like you.  

Ben also says, he thinks "it's swell," what you're doing.  You know how he talks.  He says "swell."