Tuesday, May 13, 2014

AGH! I am Uncatastophe'ed: I have a MELD score of 6

So...a MELD score of 6, you say?  What in the world is that?

It means that I am closing in on the very bottom of the scores that are even on the computer stuff describing liver disease.  Not there yet, so, yay, me!  However, I do have a score, which is new for me.  It looks like, based on a cursory google or two that I'm not even on the radar for the lowest end of the transplant stuff, which is not a surprise, but what was a surprise was that I had a score at all.  My guess is that this is one of the hoops that has to be jumped through to try to get Aetna to pay for the medicine which might kill the Hep C forever.

Dead virus.

That would be a blessing and a miracle.  I have long since reconciled myself to the idea that the Hep C might kill me, but in the words of the very first transplant doctor I got sent to in 2000, I was mostly likely to die "from the Hep C, or from a parachuting accident when you are 80".  This guarantees that when I turn 80, if I get so lucky, I should DEFINITELY go skydiving.

All my life I've been told I "wouldn't live past *x* age" by some nimrod in a white coat pontificating about all the lifestyle changes that might ensure I live even that long.  I remember being told by a perinatologist (who was reading from a PAMPHLET I'd seen six months earlier) that I'd have to get an abortion because I'd never be able to carry the child growing inside me safely...she's 20 now---

...and isn't she just as cute a monkey as you've ever seen?
So, at some point, in self-defense against all the death predicting, I made decisions based on what was best for my children in the right now short term (she was little back then, and I knew that your early life never fades, and who I was and how available I could be mattered, so taking years out to try risky drugs was a no go).

Now there is a new drug.  It comes with a great deal of hope.  Seeing as I've carried the virus with me since 1976, an unfortunate stowaway on a prophylactic transfusion, I've really come to terms with it.  It's part of me.  That won't stop me from evicting it if that is possible, realistic, and if it won't cause me to fail to be a good mom to my son.  He still needs me.  If I have to wait, I will.  I'm sure someone will tell me I'm going to die if I wait, but maybe we've all grown past all of that...

One can only hope.

In the meantime, the real work must be done by the PA who must take her lance in hand and go jousting with the Black Heart of Aetna.  I wish her good fortune, and blessings, and would be happy to lend her my guardian angel for a while if that will help.  I certainly am no good at fighting them.

An Uncatastrophe.  Long may it reign.

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