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.

A Little Relief

I am now taking two pills to help control my muscle cramps. Not two different medicines, but a double dose. My transplant coordinator asked me the other day if the extra dose was helping me at all. I told her that I was still having problems and that sometimes I still woke up in the night with muscle spasms. We have already boosted my potassium intake and my calcium to help make sure I don't have an electrolyte imbalance. But even that hasn't helped. I have also read that most people going through liver failure have trouble with cramps until after transplant and then they go away.
The other day I got a terrible cramp and my wife had a suggestion. "Maybe you should run one of those body massagers over your muscles and see if that helps." We found a massager and the next time it happened I ran it across my calf and in less than 15 seconds the cramp had started to dissipate until it stopped all together. Later that night after I went to bed I was awakened by one of my awful night time spasms and I used the massager. It took only seconds for it to go away. I am not sure if this is really working yet, but it does seem to be doing the trick.
I am really psyched about this new discovery that Lois has come up with and I am hoping that it is a solution to my problem. Before this, it usually took several minutes for my cramps to go away. Sometimes I would have to wake up and walk around and I'd lose quite a bit of sleep because of them. But now they are gone within seconds and I can easily fall back to sleep.
If there is anyone else out there who is reading my blog and have cramping issues, then I strongly urge you to give it a shot. It sure can't hurt.

How I Feel

I keep forgetting how ill I am. I have been sick now for more than 3 weeks and it just won't let go. My immune system is shot. Compromised. I've had a runny nose, a scratch in my throat and a never-ending cough. These pale in comparison to how I generally feel.
When I remove a bandaid it will sometimes tear my skin.
At night when I sleep I will sometimes get the worst cramps ever and I whimper in agony.
If I bump myself I will bruise.
I am constantly tired and restless, and without my medication I cannot sleep or stay awake.
I make 173 trips to the bathroom each day.
My jaw hurts.
My eyes constantly water.
It gets harder and harder each day to move, bend over, breathe, get up, sit down, push, pull and sometimes even talk. I lose my voice because of my shortness of breath.
My tongue is yellow white blue or green and I am sure the foul taste I carry in my mouth is just as foul outside of me as well as in. I will turn my head when I talk to you. I will hold my breath. I dare not look at you for fear of shame. I curse to myself when you leave the room.
I am very sensitive. Tears swell in my eyes when I hear about the little boy who fell in the river. I will say let's go look for him. Off we go to search the black muddy river.
I will cry when you leave the room. I will cry when you enter. But I will also laugh.
I will make fun of myself. I will make fun of you.
I will forget.
Sometimes I will ask for permission. "Can I have that?"And sometimes I will demand. "Give me that!"
I don't know why.
I get bloody noses.
I will break out in a cold sweat. A minute later I am hot as hell. I will feel like passing out. I don't.
These are just some of the things I go through each day. Some of the things are just too personal or graphic for me to express.
These symptoms alone are nothing. I could handle one or two of them together. All at once it is a bit overwhelming. An onslaught.
Normally I hesitate to speak like this -- out loud -- but something happened.

This week a fellow blogger passed away from liver failure.
Mark Emmert was one of the first people to ever contact me who was going through liver failure. Sadly though, our correspondence consisted of only two e-mails. Mark wrote me the first time to ask me permission to read my blog. His second e-mail was to tell me that he had been busy and wasn't feeling well. We never communicated with each other again, but I didn't lose touch with him. I was in contact with his family. I am deeply saddened by his passing and my condolences go out to his friends and family.