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Providing non-judgmental and non-criticizing support for family and friends of end-stage alcoholics through one-on-one coaching, support groups, blog posts, workshops and public speaking.

Tuesday, March 17, 2015

More than numbers...

One thing I've learned through writing this blog is that families and friends of alcoholics are eager to learn everything they can about alcoholism. They want to know about all the associated diseases and accompanying illnesses. Even though they know there
really is NOTHING they can do about it, still, they want to know. Knowledge is the key to survival and, after all, isn’t that what we all want? Just to survive all the chaos, heartbreak, confusion and insanity is really what we all want.

Whenever I feel arrogant by thinking that I am extremely well informed about all the biological stuff, something comes along and kicks me in the butt to wake me up to the fact that I’m not always as smart as I think I am. That was the case when I learned that Riley has “end-stage liver disease.” It was news to me. I have diligently examined each and every lab report for his liver function levels. I really haven’t seen much to indicate that he was having problems with his liver. Because he is not drinking, I was under the impression that his liver would repair itself as it has after so many of his detox experiences.

Ahhhh… The liver… it’s a miraculous and complex organ. While it cannot repair damaged cells, it can regenerate new ones.  When an alcoholic drinks so much that cirrhosis sets in the liver has scar tissue that cannot be reversed. While portions of the liver may begin to function properly to a certain degree, the liver is still compromised by the scar tissue and cannot completely and totally do its job.  It’s a descending spiral after that – the liver cannot clean the blood properly and so it does not heal and continues to get worse even if there is no alcohol ingested.

In Riley’s case, there have been too many detoxes, too many relapses, and just too many times the liver has been asked to “heal thyself.”  His liver doesn't have enough good cells left and too much scar tissue. Even though his lab reports say he is not in critical danger, the truth is that his liver is failing. When I looked back and ran a graph on his albumin levels, I can see a steady descent over the past six months. It was small – just a half point or so down one month and then near normal the next, then a couple points down. He has been doing the three steps down, one step up dance for quite a while.

If we can’t rely on the lab report to tell us, then what are the signs that the liver is failing? I didn’t realize I was reporting these signs to Riley’s doctors as I was telling them about “how he was doing.” Here is what I observed:

Confusion/Hallucinations: Riley often thought Alea was in the house in the middle of the night and asked me why she was there. She hadn’t been to our house in more than six months. Another instance was that he didn't know where “that dog” came from. He was referring to Jade, who has been his companion for about six years. He often lost track of what town we lived in and who certain people were who came to visit.

Extreme Tiredness/Weakeness: At times Riley was only awake to eat his meals. After eating he would go back to bed until the next meal. There were times when he wouldn't even get up for food.  Currently Riley spends 75% of his day sleeping.

Loss of appetite: Riley has always had a very healthy appetite. He likes to have all the food groups represented including dessert. Now he eats only half of what is on his plate and often skips lunch altogether. He passes on his favorite ice cream and isn't much interested in the homemade treats that I make for him.

Weight loss: It has always been very frustrating for me that Riley can eat his way through the entire menu of a fancy restaurant, including dessert, and never gain an ounce. He eats anything he wants whenever he wants and the scale seldom got over 175 pounds. Now, although he appears to weigh more, he is steady dropping pounds. But, he looks much heavier than he is. He stomach area is flabby which, as it turns out, is simply fluid retention.

Loss of muscle: Riley is a strong person. But, his leg muscles have atrophied to the point where he can no longer stand unassisted.

I’m sure there are other signs and symptoms that are not covered here. These are the ones that have been observed by the doctors at the cancer center and Riley’s primary care doctor.

Riley doesn't seem that bad too me. He is a cantankerous old man who feels he should be entitled to anything and everything he wants. I’m told that I’m suffering from frog soup syndrome. (Recipe for frog soup,1/25/2012) I’ve been warned that he could appear perfectly normal one day and be gone in less than 24 hours. Like I said before, I’ll believe he is dying when I see his ashes in a box.

For more information visit:
The National Institute of Health site: http://www.nlm.nih.gov/medlineplus/ency/article/000281.htm 
or just Google “Alcoholic Liver Disease”.


Karen E. said...

I am right there with you! Even though they are no longer drinking (for my mother is has been 3+ years) it is still a roller coaster ride. I am fortunate that she is in an assisted living facility and moved to the memory care area in October because at 74 tomorrow she can no longer dress herself, control or clean bathroom duties and cannot remember where her room is or what year it is. Her liver levels look okay too! One day I will think the end is near and the the next week I feel she will probably outlive me! Good luck to you and I am so happy to read that you have or soon will have help with his care. Please take care of yourself and find time to enjoy the things you like to do. You have been so good for my sanity!

Gerry said...

Linda, I wanted to let you know that Doc died of cirrhosis of the liver 3/1/15. He was 77. He signed all the papers for hospice an hour before and I happened to go down there to give him water before going to bed, and he was gasping, and died. He managed to take my hand before he left the world. I would say he was experiencing similar symptoms to Riley's about a year previous. At the end his liver caused his abdomen to swell up tight. It was obvious his liver had failed. He gave his body to science. Gerry

Zowie said...

Gerry, Peace be with you.