Walking on Glass

I learned a year or so ago that a deadly genetic disease runs in our family on my father's side.  One cousin has died from it, and another has it.  The disease restricts the body's ability to process iron, so it builds up in the system.  It settles in the liver and eventually kills it.  Patients with hemachromotosis (the disease) are, by default, not good candidates for liver transplants.  The gene doesn't change, and liver failure will almost definitely happen again.

Transplant patients get ranked by the immediacy of the failure, the prospects of immediate survival and the long-term expectation of survival.  They reserve the scarce organs for the sickest.  But the sickest have to be healthy enough to indicate a high probability of survival.  Those with congenital genetic defects that will almost certainly lead to another failure go to the bottom of the list.

That's where that scenario would put me:  at the bottom of the list.

In the short term, my doctor tells me I’m very healthy.  And he didn’t even qualify that with “for a person of your age” (a phrase I’m getting used to).  In the long term, if I have the gene, my prospects are not so good.  I might never develop the disease, but the probability that I would increase by 10 fold.

The gene may have come from my uncle's side, in which case, it doesn't affect me.  We share no genes.  But it could have come from my aunt's family, and I share all the genes from her mother on down.

I don't worry about it, unless I do.  I got screened yesterday.  I'm still waiting for the results.  I'll hold my breath until I get the results back.

I know nothing about it, other than that it kills, and I don't know what food has iron and what doesn't.  The possibilities scare me silly.  Am I going to be killed by broccoli or other green vegetables?  Am I going to have to live on rice cakes?  Can I have lasagna or manicotti?  Or a nice fruit salad?

I've known about the issue for a year or so, but it didn't become real until I let someone stick a needle in my arm for a lab report.  Now, it's more real than I want.
 
Meanwhile, I'm mentally pacing the floor, trying not to worry or let anyone else know how much I'm worried.  This is a personal issue that I will make public when and if I need to.  It’s not that I’m afraid of death:  I’m just not done yet.

And who will take care of Shannon if I’m not here?  He depends on me so much, but I don’t mind.  I depend on him, too.  If that equation gets broken, I worry that the vortex of psychosis might pull him under for the last time.

I’ve tried to hedge that anxiety by having life insurance.  He’s the primary beneficiary of those policies and my 401(k).  But who’ll do the laundry?  Insurance policies are great, but they don’t put clean clothes on you.

I balance that with the knowledge that my time here has been rich and rewarding.

In the mean time, I’m sitting on pins and needles, and my ass is getting pretty sore.  I try not to think about it, but I can’t not.  It’s real now.  I’ll get a phone call in a day or two that tells me whether my probable life span has just shortened or that I’m fine.

It’s like walking on broken glass.