Tuesday, March 24, 2009

A receptionist from my transplant center called me last week so that they could schedule a re-evaluation with my social worker and have me visit with a dietitian. It was basically a formality that needs to be done every 6 months. Not wanting to put it off and feeling somewhat anxious I asked her if we could do it the next day. That was last Tuesday.

When we went in for my appointment I weighed in at 172 lbs. I wanted to cry. I've gained 18 pounds since my last visit a month ago. A sure sign of ascites. Now I know why my legs hurt so much. They can't take my weight. I have been limping around for the past two weeks because my left knee keeps going out on me and it hurts to walk. And I am slowly losing my muscle mass. The thought that I have ascites is frightening. (Ascites is the build-up of fluid in the stomach and it can cause a lot of discomfort. The fluid can push against the abdominal walls and can lead to heavy pressure in the stomach causing shortness of breath, bloating and flatulence. It can also be the cause of nausea and vomiting, halitosis and heartburn. These are just a few symptoms.) Of all the signs and symptoms of this disease; this has been the one I am struggling with the most.
When I was done with my visit my transplant coordinator came in to see me. I think she realized that I was discouraged and she mentioned my MELD score was still at 11. She said that for right now I only needed labs every three months, but if I wanted to come in earlier than May then I could. This cheered me up because I appear to be one of those people who doesn't seem to get sick on paper. I had actually hoped to see some changes in my last labs, but nothing has changed. The number stays the same.

I suppose this is a good thing, because we still have to get the house in order. I'm actually out shopping bathroom hand rails when we go to the stores because I seriously need them --NOW.

(I kind of like the antique chrome)

(It's a little nicer than the silver and gold chrome)

(But this bar, although sporting a plainly look, seems to speak out to me.

It has the I've fallen and now I can get back up look.)

Any how, on our way home from the hospital my wife painted me a picture. She wants to move the girls downstairs into different rooms and turn one of the upstairs rooms into a computer/lounge/recuperating room for me when I get out of the hospital. We would make a spare bedroom out of the other room. It is a good plan, but it is a lot of work. I don't know how we are going to pull it off. We are talking about moving four rooms between three different floors. Time and strength is our enemy. We don't have a lot of it. I get short winded real fast and my body is weak. I don't dare push myself or I could start up another bleed.
But there is more to the picture. Lois is just as exhausted as I am. Perhaps more so. She is running the whole household by herself and I know it is difficult on her. We enlist the help of the girls but it is often trying. I try to do what I can but it isn't much. Today I am doing laundry and I am going to try to mount some new curtain fixtures in Alys room.

Physically I am starting to get a lot of cramps in my legs and when I get short of breath I can feel fluid in my lungs. I don't know what that's about yet. In the long run I am holding up okay, considering the circumstances. My spirit wavers from time to time but I can't imagine not being touched by this. It's a pretty big deal.

In closing I am thinking about all the people I have met recently who are ill or recuperating. I pray you all good health. I pray for your families as well. The emotional and physical toll on everyone involved is enormous -- for the wives, and the husbands and the children. Sometimes I forget that the emotional, financial and physical stress can be so taxing -- on everybody.

Thursday, March 12, 2009

One Year Now

(My wife reminded me the other day that it has been one year since I was hospitalized and we found out that I had liver disease. I didn't have anything ready to post but I thought I should at least write something)

It has been one year ago yesterday. One year since my life abruptly changed.
My life.
My wife's.
My children's.
Our whole family.

In life there are some things you can't take back. Things you cannot change.
This is one of them.

"You have varices."
It still echoes in my head.
A lot has happened since then.
The disease has morphed and changed.
I have changed. Both mentally and physically.
It seems like a bad dream at times.
Like a horrible nightmare.
Like nothing will ever
Be the same.

It has been one year now.
Things do change.
I have changed.

Sunday, March 8, 2009

What Was I Just Saying?

So here’s the deal. Lately I haven’t been feeling very well. I have been really sore and my joints are killing me, particularly in my legs. A few months ago I went to see my dermatologist because my psoriasis was getting out of hand. I was beginning to scratch so much I was starting to bleed. My biggest concern – on top of the fact that I was feeling uncomfortable and miserable -- was that I didn’t want to risk the chance of infection because of my immune system. So I went to see the doctor and I pleaded that we do something different other than the topical treatments I’d been using. And after reviewing everything we’ve done and thinking about some things we could try, we decided to go with Enbrel injections. The stuff is amazing. (And for the $ you would think so). When I saw the dermatologist the other day he said the psoriasis was gone. I asked him about the joint pain (because I also have psoriatic arthritis) and he said generally that would be the first thing to leave with this medication. He also reminded me that I’ve been somewhat of a puzzle all along and that maybe it would go away last. “Let’s just keep an eye on it.” He said. That was about two weeks ago and the pain has continued to worsen.
Well yesterday while I was at work my knee started bothering me and I began limping. It felt like my knee had just gone out even though I didn’t do anything. I thought if I worked it a little and walked around it might go away. But, six hours later it was still aching. This thing isn’t just going to go away.
Last night before I went to bed I looked at it and it had definitely swelled. Today it even feels worse. I will certainly be making some plans to see my family doctor this week.

One thing I have noticed as time goes on is that there is no rhyme or reason to all the symptoms of liver disease. Everyone is affected differently. People present differently. Most people will share many of the major symptoms that liver failure brings about, but everyone has a unique set of problems all of their own.
I have also become increasingly aware of my body – its likes and dislikes – and it has helped me. I realize that salt is no longer an option in any amount. It just winds up making me sick or bloated so I have pretty much eliminated it. Occasionally I still partake, but nothing excessive. I have also noticed a visual change. My peripheral vision is always going crazy and I constantly see things out of the corner of my eye, more so than usual, and my eyes are always watering.
And then there is the memory thing. Perhaps the scariest feeling of all is when I question my focus. I know that I get a little hazy and my concentration isn’t what it used to be. It’s definitely changing. I can’t read anymore because when I do I suddenly realize I have just made up my own line and verse. It makes for good storyline sometimes but I’m pretty sure my version isn’t what the author was after. The thing I hate the worst is that feeling of emptiness, when you stop in mid stride and everything is blank. When you stop and ask yourself: What the hell was I just doing?

Monday, March 2, 2009

While I was looking in the mirror this is what I was thinking...

I wonder sometimes what others see when they look at me. Am I so shallow that I will let my appearance deceive me into thinking vanity and looks govern my integrity?
It is a rhetoric question, but not without some merit. As this illness slowly takes over my body I stand naked and examine this body.
I used to wear long sleeve shirts to cover my lesions from the psoriasis. Sad that my body looked the way it did; not shamed. But I can not cover the marks any longer, and I stopped long ago. These scars will never leave me.
I can not hide my weight with a larger shirt. It just makes me bigger. And it is not disgust with what I see, it is a memory of what used to be.
There are newer things that bother me now. Freckles and speckles I call them. The psoriasis has left, but now I have living dying skin. The evidence runs up and down my arms and legs like blemishes. The color of my skin is the perfect color for contrast.
My moving is slower. Not so much the result of age, but of dying muscle. It is painful. My legs scream out under the weight they carry.
The runny noses reveal more blood and the lack of sleep is tiring. Exhaustion is from sleep and no sleep, it doesn't matter.
I am self conscious. And that bothers me because I am still the same person I have always been.