Tuesday, February 24, 2009

Make This Go Away

I get angry. It is a side of me I don't particularly like. I will snap and yell and curse and scream. Later I will hang my head in shame. I never used to be that way. It kind of snuck up on me when I wasn't looking. And it was probably one of the first and most recognizable symptoms of my liver disease. That and the fact that I bruise easily.

When my wife and I visited with the doctors after I was diagnosed with End Stage Liver Disease, one of the questions they asked me was whether I ever experienced any mood swings or had any temperamental behavior. The answer was yes. There is no telling when I began to present, but it would have certainly been marked by years. As my wife and I sat there talking to the doctor and the fellow, my wife recounted a story about my temperament. The fellow looked over at the doctor and the two seemed to have a wordless conversation that led to the fellow leaving the room and coming back in writing out a prescription for a drug called Lactulose.

I was told that I was most likely experiencing Hepatic Encephalopathy. With severe liver damage, the toxic substances normally removed by the liver will begin to accumulate in the blood and can impair the function of brain cells. Because I had just had a varice bleed we knew that I had portal hypertension. In short I had high blood pressure in the portal veins and its tributaries. I am now taking a beta blocker to slow down my blood pressure to help prevent another varice bleed. Toxins that are normally cleansed and purified by the liver were basically traveling straight to my brain. This in turn can lead to impaired cognition, flapping tremor, and a decreased level of consciousness that can lead to hepatic coma or death.
When the liver quits metabolizing ammonia to urea, the ammonia (along with other toxins) travels to the brain and can cause damage to the brain cells. I can't really explain the many effects of encephalopathy because I'm not at all qualified, but the gist of it is poison makes its way to the brain and it is very dangerous. Without treating it you can die.
I was given lactulose because it is basically a stool softener and diuretic that grabs the ammonia and escorts it out of the body. Waste management.
My mood swings have changed a lot since I started taking the lactulose. I am for one a little nicer to be around than I was before. I have mellowed out somewhat. I am not always as quiet as I could be, but I am not as loud either. And at times if I seem a bit too boisterous my wife will ask me if I've taken my medicine. I hate taking the lactulose because...well, who the hell wants to run to the bathroom all the time. But the medicine is one of my life savers, along with taking the purple pills and going on a salt free diet.

Learning to recognise the signs and symptoms of this disease is a continuous effort that we keep a vigil eye on. I am currently taking a regimen of drugs and adhering to a diet to ensure that healthy measures are being taken to minimize any caustic damage that can happen to me while I wait for a new liver. Watching for signs of bleeding is perhaps the most important thing I can do for myself. Having already had a varice bleed it is likely that it can happen again and in fact more bleeding has occurred since that first time I was admitted to the hospital. The thought of hemorrhaging out is scary because it can happen very fast. That is why I am taking a beta blocker and the little purple pills.

This week I will have been listed for 6 months. Part of me wishes for my numbers to change. Part of me says no. If I have ever sat between two stools it is now. As I tell myself to Hang On, I am also saying, "Make this go away".

Tuesday, February 10, 2009

There's a new game in town.

Well we finally saw the doctor today. Nothing has changed. My MELD score is still 11 and I suppose that is a good thing. My weight has gone up a few pounds more. The doctor doesn't really seem to think I have ascites. He thinks it's just weight gain. Which is a good thing considering I really don't want anybody draining fluid out of my body.
I have another endoscopy in April or May, and I need another CT scan in three months. So I guess I got a clean bill of health. And oh yeah...he assured me that I will still be getting sick. That's something I have to look forward too.
He was very nice. We are basically meeting up with a whole new team of doctors since the hospital went through some problems among the old transplant team. I don't know the whole story but, from what I do know I should probably just keep my mouth shut. The point is I have new doctors now and it sounds like they all have some wonderful credentials and the experience to back it up with.
I'm hungry... Wait a minute...if I'm not sick am I just fat?

Wednesday, February 4, 2009

When Good Days go Bad

I got up and I watched The Young and the Restless. I really must be starting to get sick. Actually this is a good day.


Today I have been off cigarettes for 9 months! Sadly enough I just had a craving.

Sunday, February 1, 2009

my tummy hurts

Do you know how most people usually stuff themselves over the holidays? Or how on Thanksgiving Day we tend to over stuff ourselves as full as the turkey's that we are eating? This is how I generally feel when I get sick. Only worse. I get a constant stomach ache that just doesn't go away. They usually last for a number of days and they are almost always very painful.
I have been sick now since Friday night and nothing helps. I can't take things like Pepto Bismo because it is harmful to my liver. During these spells my stomach swells and I feel bloated. My muscles hurt and I start to cramp. I get back aches and I wrestle with vomiting and diarrhea. It is hard to sleep because the pain is so uncomfortable. And every time I mention that I am doing well or that things have been good, I end up getting sick again. (I really need to stop doing that).
These bouts come and go and there is no way to distinguish just what triggers them. I am thinking that maybe it is the food I am eating at the time. Or it is one drink I shouldn't have had. A cup of coffee. A can of pop. That oh so yummy sandwich from the corner deli.
This weekend has only been slightly miserable. Usually when this happens I am doubled over crying. I don't get why this is any different but I am thankful that it is not worse.
Anyhow, this has been my weekend. And just a few moments ago my transplant coordinator called me to tell me that they need me to come in so they can get new labs. Maybe this is a good thing. Taking blood on a sick day. It would seem as though the numbers might change being this sick. I guess we'll find out.