Dennis’s Story

Site created on July 2, 2023

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Journal entry by Dennis Rayl

Before I start my tale about me, let me tell you of a very close friend who died recently. For so many years, he and I seemed to have a competition over which one of us could be the champion of pain and suffering. He won, hands down. He suffered incredible and constant back pain, he had more kidney stones than Carter had little liver pills (yes, I know that for many of you that's meaningless, but suffice it to know that there were millions of those little pills). And there was so much more. He's free from pain at last. Please remember Louie's family in your prayers.

**

By now, I think most people in the whole, wide world know that I have liver disease and that I’ve had a small cancer on my liver. We’re pretty confident that the radioembolization that I had a few months ago took care of that particular bad boy. There is another lesion that appears to be pre-cancerous but we’re not sure. I’ll have an MRI later in April to check both the treated cancer and the possible cancer and anything else out of the ordinary.

I’m not experiencing much pain (minor ache in the area of the right lobe of the liver) but that may not be related to my liver. None of my doctors are pessimistic about my condition. Nobody’s suggesting I’m even on the sidewalk leading toward death’s doorstep. So if anyone was getting anxious for me to depart this mortal coil so that you might benefit from my will, relax. You’ll have to wait. While you’re waiting, however, you might consider saving some money so you can pay all the bills that will be your inheritance. Even casual friends are beneficiaries of my will. Not to worry, there will be plenty of nothing for everyone.

My problem is non-alcohol cirrhosis and my intention today is to provide you with some of the information about the disease. I’ve gathered the information from several carefully chosen web sites. I’ve visited the Mayo and Cleveland Clinic sites, the American Liver Association, Britain’s National Institute of Health, etc. as well as a large compilation of Far Side cartoons.

Feel free to read as much or as little of the information as you care to read. It's lengthy. My feelings won’t even be hurt if you ignore this altogether.

Here we go.

 

The liver plays a vital role in the health of our bodies. Its function is to remove toxins (that we absorb in one way or another) from our blood. Its function touches every system in our bodies.

It’s a very remarkable organ in that if part of it is damaged, it can normally regenerate itself. However,  it can also be damaged in a way that it cannot recover.

Damage to the liver caused by things like hepatitis, alcoholism, and fatty liver disease fall in that latter category.  I was diagnosed with fatty liver disease around 50 years ago. Fatty liver means that there is an excess of fat cells throughout the liver. It’s not the result of overeating and has  little or nothing to do with waist size. It’s possibly genetic. At least one of my brothers was diagnosed with it and I suspect that others would have been had they had a liver biopsy (which I would not wish on anyone!).

As the liver tries to repair such damage, it produces scar tissue. If the cause of the harm to the liver is not caught and stopped early on, the liver continues to try to repair itself to the point that it becomes so scarred that its usual function is degraded and eventually fails completely. If the liver’s ability to filter toxins from our blood is limited, those toxins stay in the blood stream and we all know where that goes. Everywhere.

That’s cirrhosis.

As cirrhosis gets worse, more and more scar tissue forms, making it difficult for the liver to do its job. Cancers might develop on lesions resulting from the scarring. Such cancers can and often do, metastasize to the skeleton and lungs.

The only ‘cure’ for cirrhosis is a liver transplant but even that does not always prevent the effects of cirrhosis from continuing.

A number of things can be done to lessen the impact of cirrhosis. Removing alcohol and adjusting one’s diet can ameliorate the liver’s difficulty. I’ve been put on 6 small meals a day to lessen the strain on the liver – less food at one time = less work for the liver. Salt is pretty much a thing of the past. Meat should be lean and most fats should be left to themselves. There are some foods that are easy on the liver, e.g., avocadoes, and those are recommended. Coffee and tea, in spite of their often maligned reputations, are pleasing to the liver. Highly processed foods and spicy foods must be extremely limited. Proteins are important. I could go on, but I suspect you have the idea.

So what does cirrhosis do to the body?

Fatigue is a major problem, followed closely by lack of energy, light-headedness, confusion, forgetfulness, difficulty concentrating, etc. It affects balance, making falling a distinct possibility. Fortunately, I haven’t fallen in several months and I’d like to keep it that way.

As long as we’re in the neighborhood of fatigue, that circadian rhythm that manages our sleep cycle is a target of cirrhosis. I have some nights with decent sleep (and I do use a sleep medication – have for years. Hmm, I wonder…), but most of the time I cannot get to sleep before 1 a.m. or later. Some nights I’m up until 2-5 a.m. I’ve been known to stay up all night occasionally. If I compensate with naps during the day (and I can’t avoid them), I need to limit them to not more than 1 hour. If I sleep longer, I’m done for the day. Sometimes I’ll get a second nap but try to keep that closer to 30 minutes.

Cirrhosis likes to mess with your taste buds, changing or diminishing the flavors of favorite foods. Because it’s not removing toxins, they get the chance to build up in your mouth and destroy teeth. Breaking and losing teeth are common – even with good oral hygiene.

As long as they’re in the neighborhood, they won’t hesitate to foul up the sinuses, thickening mucous and/or increasing post nasal drip (When I get up in the morning, I have to rinse the mucous out of my mouth before anything else). Of course, the additional toxins in the mucous help increase the damage to teeth and gums.

And, in the same general area, the toxins have a way of messing up vision. I get spells of blurry vision and even at the best times for my eyes, my recently obtained glasses are rarely completely satisfactory. You just can’t imagine how much fun double vision can be – especially if you’re driving the car in traffic.

Once the liver has strained toxins out of the blood, it’s supposed to dispose of them through the excretory system. Of course, as long as things in other parts of the body are out of kilter, why would the bowels and bladder be left behind?  One of the toxins that should be eliminated, ammonia, can build up and contribute to that fatigue I mentioned earlier. I am no longer a stranger to products that help with elimination of body waste. Of course, ass with so many other medications, several of them cause me more trouble than help.

When blood leaves the liver, it heads directly to the heart and can impact it negatively. Mayo or Cleveland Clinic’s website says that it’s quite common for folks with cirrhosis to experience arrhythmia and/or atrial fibrillation. In fact, it seems that people with cirrhosis will die of a heart issue rather than liver failure. I guess it’s time to make my annual appointment with my cardiologist.

From the heart, blood makes a trip to the lungs for an exchange of gases. Yep, cirrhosis can disturb that system too. So far I’m okay there, but shortness of breath and low intake of oxygen are possibilities (those are the good possibilities). I am finding that I have to work a little harder to keep my oxygen saturation in my blood in a good place. I used to be on oxygen 24/7 and I have a hunch I’ll be going back there before too much longer.

Let’s see. There must be something else that cirrhosis likes to do. Muscles begin to waste. I’m surprised by what I cannot lift now that I could just a few months ago. Legs, ankles and feet might swell but I have other causes for those issues. Then there’s the largest organ – the skin. Itching can be a problem. And it’s a big issue for me. Sometimes I’ll itch in just a spot or two. Sometimes, the itching is all over me. Lotions help some, but not completely. My groin itches almost constantly. I have found some relief there by using a generous amount of Desitin. I’m supposed to keep my finger nails short so that I don’t damage my skin with scratching.

I never know what the following day is going to be like. In fact, sometimes I don’t know what the afternoon holds for me even if I get off to a good start in the morning. Makes it difficult to plan ahead.

There’s another issue I’m dealing with also. Peripheral neuropathy caused by diabetes. My feet and lower legs constantly tingle. Sometimes the tingling goes into my upper legs, but fortunately, not often. Every once in a while, I’ll get the sensation of pin point burning in various parts of my lower legs. Very annoying and more than a bit uncomfortable.

There is a spinal cord stimulator that can relieve that neuropathy, but on the day that a trial for that stimulator was due to begin, the pain surgeon refused to proceed. My platelet count had been around 100 (which is not uncommon for me) and he was concerned about excessive bleeding. I’m still hoping to persuade him to try but don’t know if he will. In the meantime, I’ve purchased an electro-magnetic stimulator pad that claims to be effective for neuropathy. I’ve only had it for a week or so and it’s too soon to know if it will live up to its hype.

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