What You Got in Those Genes?

4+ Months with the Kidney

Back in February, while I was in the thick of being evaluated and having my donor evaluated for a kidney transplant, I wrote about my sister Jocelyn.  Jocelyn was kind of one of the first people to agree to donate her kidney for me.  I say kind of because there was almost no asking her if she wanted to donate her kidney to me.  I guess being that she is the sister closest to me in age, my family just assumed that she would probably be the best candidate to donate to me. And when the time came, she didn't voice any opposition.  She actually seemed quite calm about the prospect of having surgery. Whereas, I was enduring self-induced panic attacks thinking about the prospect of me waking up in the middle of having surgery. I know. My mind...there's...something wrong with it.    

Well, to recap what happened after my sister volunteered...had 14 vials filled with her blood...a CT scan and a kidney function test...she was rejected as my kidney donor.  Yep.  We all got the shock of our lives the day that happened.  That was the day when the thought that I might not actually get what I want began to sprout from its roots in my psyche and yield it's first blossoms of pessimism.  My family and I...and Jocelyn...had counted on her being the donor--so that we could stop wondering and looking and testing, so that this trial would all be over, so that I'd be healthy and able to live a long life.  We didn't count on her not being able to donate.  You know that saying about making God laugh by telling him your plans?  Well I prefer to think of the exchange between me and him going something like this:

Me:  Yo...God...What happened?  I thought Jocelyn was gonna be the donor.  Isn't that why you gave me a sister?  Not because I needed someone to play Barbies with and boss around...but so I could have another semi-twin body to harvest organs from in case I need them!

God:  Yeahhhh welll, about that....I never said she was your little organ harvest clone. And I never said you were getting the transplant in February.  You came up wit dat yo' self.  But, I've always loved your wild and crazy imagination.  That's why I made you a writer. Duh.  

So yeah, that's what happened. Jocelyn got her walking papers from the transplant evaluation crew.  I didn't get her kidney in February.  And everyone was really upset for a while.  The reason Jocelyn was rejected was due to the results of some research I did at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).  I participated in one of the studies the institute did to find out what some of the causes of kidney disease might be.  As part of the study, the researchers found that I have a certain genetic marker.

"The researchers found that African-Americans with two copies of the APOL1 variants have about a 4 percent lifetime risk of developing FSGS. Those who develop kidney disease tend to do so at younger ages than other FSGS patients, with 70 percent diagnosed with FSGS between age 15 and 39, compared to 42 percent in that age group for people with one or no APOL1 variants." --NIKKD

Bummer, right?  Well, this research is still kind of new and it's pretty early to tell what this all means.  But the doctors at the hospital wanted to project Jocelyn as much as possible, since she was graciously volunteering to donate her kidney to me.  The doctors thought she would be served better if she found out if she has the same gene variant that I have.  

Well, Jocelyn gave more blood to find out what her genes are made of.  Not some expensive blend of Rock and Republic cotton.  But also...not risk alleles...or at least not the ones I have! YAY!  In Jocelyn's words, her reaction to the news that she does not have the genetic marker for FSGS:

"I felt like 'wow, well I coulda told you that.'  I feel like [the doctor] made it a bigger deal than it needed to be, and he was being cautious but I don't feel like he was being rightly cautious.  I feel like if I had something similar to what [Jewel] had, and [Jewel] got [her's] when [she] was 16, I just would have gotten it when I was 16.  In the event that [Jewel's] kidney doesn't last in 35 years, then I want to be able to be the one to donate to [Jewel] without [her] having to go through this long process of finding someone else." 

Aw. Isn't that great. I really love that Jocelyn found out she doesn't have the same genetic marker that I have, because having kidney disease is kind of a downer.  I mean, granted, I've learned how to live my life with it and have been molded by my experiences with kidney disease.  But nobody wants their family members to have to go through any type of scary health situation.  Ain't nobody got time for that.  And Jocelyn's in college...so she really doesn't have time for that. Or money for that, either.  I also love that STILL, she volunteers to donate her kidney to me in the event that my dad's kidney fails.  However, I'm really hoping that some of God's plans for me involve me keeping my dad's kidney forever and a day.  

Mostly, I love having not one, but two amazing sisters.  They were not made to be organ harvest clones for my failing body. They were made for something so much greater than that. God only knows the plans he has for such incredible human beings.