Friday, July 24, 2009

Ugh!

These past two weeks have been really hard on me. I suspect even the medicine I am taking is starting to take second seat to what my body demands. I purge myself with calcium, vitamins and potassium, but none of these things take the pain away. They are just nutrients my body needs. It is getting harder for me to move around and I am constantly exhausted. I have however managed to provide myself with some night time relief as far as my muscle spasms are concerned, but the muscles themselves are constantly sore and I ache. On top of this I have a back ache that is killing me. I think I probably tore a muscle moving furniture. I guess I should go see my regular physician.
Aside from the physical discomfort that I have going on, I think I am mentally wrestling with the biggest dilemma of all. How on earth are we going to afford to pay for my after care drugs if I am unable to get help from the Indian tribe? In the last few months Lois and I have managed to do things I thought virtually impossible. Getting my adoption records opened was one of them. We are now working with the Pasque-Yaqui Indian tribe in Arizona and trying to figure out what steps are next. They tell us this could take months. There are days when I feel as though I don't have a lot of months. On Monday I am getting new labs. I am anxious to see what this reveals.
I am trying to keep a level head about all this, but as my health declines I am starting to worry. No after care drugs means No transplant. This is hard for me to fathom. And all I can see are giant red letters stamped on some insurance forms that say: DENIED: THIS CANDIDATE HAD NO MONEY. Isn't it hard enough already to have to face these odds? Three to One.
This is what they tell you your chances of survival are -- 3 to 1. In the first year, roughly 17,000 people will need a liver transplant and only 6,000 or so will get one. The other two-thirds move into the next year. Of that number one-half of them will be removed from the list for whatever reason. Maybe they have another condition that makes them ineligible to stay on the list. Maybe they have been removed because they are not following the rules. Or perhaps they are no longer candidates because of some other reasons. Or, they have already passed away because it was too late. The other half will then move into the following year if nothing becomes available. This confuses me. They are basically saying of that two-thirds, half will die. So why don't they just say that in the first place? It is really kind of a 50-50 thing from the start.
But anyway, THIS CANDIDATE HAD NO MONEY. How messed up is that?
When I get high enough up on the list what is going to happen? The doctors will be doing their review board and John Henry, Itsy Bitsy and myself will be next in line. But then so and so will say, "We're going to have to scratch out Beaux. He still doesn't have any way to pay for after care. Who's next on the list?" It will be that simple. I will not get the phone call. Well...actually I will. The finance people will call me from time to time and politely ask, "Have you figured out what you're going to do yet?"
And me: "Uh, you mean other than waiting to die, butthead?" I suppose I'll refrain from the sarcastic wit, seeing how they do have the power to knock me entirely off the list. There is nothing better than having my life placed in somebody elses hands. Truly.

The other day I was telling Lois it seemed so odd that I actually had people following me. When I first started this blog it was really just a record. Maybe it would be a good way for me to vent. And I thought that maybe there were others out there that I could talk to who were experiencing the same things that I was. All these things were truths. It has been really good for me and I have learned many things about this illness. I have also met many people in the blogging community and people who I correspond with by e-mail. It occurred to me that I have never said "Thank You." I love that people e-mail me and leave me comments. It lights up my day. As hard as things have been, I find comfort in a single sentence that just says, "Hello" or "Take Good Care." These things bring a smile to my face and sometimes tears, but they are a welcome and a blessing to me. So, I want to share that with you all now that it is on my mind. I am truly a blessed man. Thank you.

6 comments:

  1. As Lois has said- It WILL happen! I still do searches online to see what kind of help may be out there for you as far as after-care drugs. I hope the tribe is able to assist, but even if it doesn't work out something else will.

    If your blog readers have to go door to door- we will! Am I right or what, people? ;)

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  2. Good wishes to you. I wonder if it is worth starting to contact some of the major drug Corporations and Heath insurers seeking charitable assistance? They are always running commercials here about how charitable they are and how much they care for their customers even if they do not really. The payoff for them is excellent publicity at a time where their very industries are under structural attack.

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  3. We found a name for my mom but the tribe informed us that she was way too young. Lois explained that she was a minor when she had me and my sister and this gave the woman some pause. Now she says that we need to produce the original birth certificate so that she can verify names and age.

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  4. I am praying for you everyday. I do believe that it will all work out and you will get your transplant and then healing can begin.

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  5. Pak Karamu reading and visiting your blog

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