Friday, February 10, 2012

The Waiting is the Hardest Part...

After a lengthy visit with my Baylor Medical Transplant team yesterday, I'm feeling a bit more frustrated than before about the progression of this whole thing. My MELD score is up to 23, the highest yet, and it's pretty obvious now that I'm unable to function in any normal capacity. The fluid buildup in my abdomen has become nearly unmanageable, and my energy level is almost nothing. Not to whine, but I've been on this train ride for awhile, and I am at a point now where I could use some answers.

My wonderful specialists at Baylor Medical say I should by all rights be getting a liver now. Two years ago they would have transplanted without hesitation, but because demand is so much greater now (older population, growing number of unhealthy people and lifestyles, etc.) they just don't have enough to go around. So I have to wait until i'm about at a MELD score of 30, which is pretty close to knocking on death's door. With the exponential rate this thing has moved along within the last few months, that may not be for much longer.

I think one of the most frustrating things about this is that they tell me they could do a three-day inpatient procedure to help get some of this fluid off, which would improve my energy quite a bit, at least temporarily. Unfortunately, my Scott and White Healthcare provider has refused to cover this cost, even though I am paying a premium for the best all-inclusive coverage possible.

Baylor says this is common with Scott and White and they have to fight these battles with them all the time. If I were with any other provider, they's simply refer all this care on to Baylor Medical and let them do all the work. So, I'd love to switch. But, I'm uninsurable right now with this pre-existing condition. Here's where it gets tricky: Medicare is my Primary provider, with Scott and White as my Supplemental Secondary provider, paying for the remaining 20%. Workplace healthcare only does Primary, not Secondary. I can get Secondary though Medicare if I'm 65, but I'm not. Baylor said that I'm in a tricky spot: I'm fully insured for transplant with the setup I have, so it's tough to change at this point. If I were living on welfare and destitute, I'd get everything for free. But since I'm working, paying taxes, and trying to build a future to the best of my ability, I'm pretty much fucked. It's tough to know that I'm paying out the Wazoo and not getting the coverage that I need. My biggest and valid fear is that Scott and White will drag their feet so long on these crucial care decisions that I will develop liver cancer, or other complications, at which point it will be too late to transplant.

I keep telling myself that I have to stay positive. But I'm tired of putting my and Amanda's lives on hold while I get sicker from year to year. I don't want much; just the normal life that so many others seem to take for granted. Or, if the dreadful alternative is my eventual reality, then was was all this for? What did I leave behind? Does the suffering add up to some greater meaning in the end?

Anyway, I'm too tired today to make jokes, or to say something inspirational, or to try to put on a smile. That's what tomorrow is for. I'll get up, and do it again, because I DO believe that this all has to mean something, and that there is peace for all of us to be found. Faith.


  1. Wow, Pat. You are so brave and honest. I'm so sorry for all of your suffering. It's totally unfair.

    With love,

    1. Thanks Shana... I sincerely appreciate your kind words.

  2. Hey Pat..your conundrum hits a familiar chord. Stay as stong as u can, be as vocal as u can with ur provider, use any an all connections u have to go over th heads of feet dragging decision makers. You are so right about those who take their health for granted. Having it is a gift that all to often we squander. Keep fighting for what u need.

    1. If anyone can identify with these Healthcare frustrations, it certainly must be you, old friend. I'm going to take your words to heart and start getting aggressive with my providers. Thanks for you thoughts and the inspiration you've set for all of us.