How Will You Know if Liver Damage Becomes Severe?

When doctors told me that I needed a liver transplant, I was shocked - not just surprised, shocked. Eighteen years prior I had been diagnosed with Hepatitis C: Maybe five years before my transplant diagnosis a GI doc told me that my liver showed some cirrhosis. I still didn't give the matter enough heed. After all, I felt pretty good - a little tired sometimes, but I wasn't jaundiced (the only real symptom of liver disease I knew about) and assumed that everything was OK. For crying out loud, I'd gone to Europe with my family just two months prior to my diagnosis - does that sound like someone who needs a transplant?

Truth is, I was unaware of the symptoms of advanced cirrhosis and a couple of weeks after returning from our trip I began having problems with edema (extreme swelling in my ankles and feet) that wouldn't go away. When we couldn't get it under control, my primary care doctor put me in the hospital to run a battery of tests and that's when I got my end-stage liver disease diagnosis and the transplant discussion ensued.

Would I have done things differently then if I knew what I know now. Oh, God, yes! It's my hope that everyone with liver disease knows the symptoms of end-stage liver disease and can be a better self-advocate. In addition, it can help patients anticipate some of the conditions they may encounter so they can be better prepared than I was.

HCV Advocate, an EXCELLENT resource for anyone with Hepatitis C, published in its October newsletter a list of key symptoms that accompany decompensated cirrhosis (the liver is severely scarred and damaged). They include:

• Ascites

• Edema

• Varices

• Bleeding and bruising

• Gynecomastia

• Encephalopathy

• Infections

• Pruritis (itching)

• Jaundice

• Kidney disorders

• Liver cancer

• Menstrual irregularities

• Changes in nails

• Portal hypertension

• Nevi (spider angioma)

• Sepsis

• Malnutrition and weight loss

While this list is long, I experienced other symptoms, too - including the extreme and painful cramps in my hands, feet, calves and thighs. So this list may not be exhaustive, but it's the most inclusive one I've come across (and it offers a bit of detail about each symptom, too, which is quite helpful).

I encourage anyone with Hepatitis C to visit www.hcvadvocate.org and sign up for its regular newsletter. Some information is a bit technical but I've become a better self-advocate my learning the medical terms and reading the articles. I'm confident you'll find it useful.

Women's Health Issues and Liver Disease

Since May 2006, when I was diagnosed with end-stage liver disease and was told I needed a transplant, I've experienced intermittent amenorrhea, which is a $20 word that means the absence of menstrual periods. I would have a period for four or five months, then nothing for seven months, and back-and-forth on the same general routine. I spoke with all my docs about it - hepatologist, internist, gynecologist - and no one had an answer and, to my disappointment, didn't investigate the matter further. I dumped my gynecologist, whose response (or lack of it) was the biggest let-down, and haven't yet replaced him because I expect to get the same reaction no matter where I turn.

I want to know WHY. Why, all of a sudden, did I stop having periods when I'd them like clockwork for years? Why did they come and go? Yes, I was in my late 40s so it could be perimenopause symptoms, but couldn't it also be something else, something related to my liver condition? Given the timing I didn't believe it was coincidental.

So I did my own research on the Internet and found one solitary abstract from a medical journal, stating that it was common for women with end-stage liver disease to experience amenorrhea, and after a liver transplant their periods would resume, on average, around five months later. Such was my experience. I shared this with my docs but none of them "took the bait."

So, today I stumbled across a blog post describing some of the presentations made at the Fall 2007 conference of the American Association for the Study of Liver Diseases. On Clinical Correlations: The NYU Internal Medicine Blog, Ponni Perumalswami, MD wrote,

Another important presentation was given by Dr. Terrault who discussed the unique aspects of liver disease management in women. While the authors described a number of important observations, the most interesting were the findings that the risk of amenorrhea is increased in women with cirrhosis...

Dr. Terrault also stated that women with chronic hepatitis C have slower rates of fibrosis progression as compared to men, and that when they are treated for their disease, they are more likely to attain a sustained virologic response. All is not optimistic, though, because during their post-menopause years their HCV disease and progression to fibrosis tends to accelerate. Once these women hit the post-menopausal period, their risk of developing hepatocellular carcinoma also increases.

I need to do a bit more digging and see what I can unearth on this topic. Knowing about and understanding the impact of liver disease and cirrhosis on my menstrual cycle is IMPORTANT TO ME. Without information, I can't cope with the myriad physical symptoms and changes that I deal with on a daily basis.

With more info in hand, it might be time to start looking for a new gynecologist. My fingers are crossed.

Graphic from cdc.gov

A Real Pain in the Leg

Everyone gets a muscle cramp from time to time. For me, it's usually the calf of my leg and I can relieve it by eating a banana (for the potassium) and walking or stretching. They are uncomfortable but no big deal.

That was before I had end-stage liver disease. Muscle cramps became one of the most challenging, if not the worst, symptom I experienced when I was sick.

Four or five months before my liver transplant, I began having bad muscle cramps in my legs and feet. Really bad cramps, whose frequency and severity increased as time passed. Then I began having them in my hands, too. These "cramp attacks" happened without warning at all times of the day and night. Night cramps were the worst, because they would jolt me out of my sleep (and I wasn't sleeping well then, so it was insult to injury) and keep me up for an average of one to two HOURS. Yes, you read that right: hours.

I never really understood what caused the cramps. Thinking that the diuretics I took (because of water retention) had depleted my body of potassium, I ate bananas, but no luck. My doc prescribed potassium supplements, muscle relaxants and sleeping meds, but no luck. Someone suggested tonic water; again, no relief. Actually, nothing made the cramps stop.

The cramps were so bad that there were times when I couldn't go up and down the stairs in our townhouse. On other occasions, my husband had to help me dress because I couldn't bend my leg to put on pants or socks. And losing sleep because of the cramps was insult to injury.

The cramps subsided only after my liver transplant and I haven't had one since. But more than two years later, I still recall how miserable they made me. I'm glad they're gone!

A Pesky Little Symptom of End-stage Liver Disease

Prior to my transplant, when I had end-stage liver disease, I experienced an array of related health issues that were bizarre or bothersome or painful, and sometimes all of these simultaneously. They sucked.

This morning I was reminded of one of these symptoms when I made an appointment to see my otolaryngologist - fancy word for ear, nose, throat doc - for an ear issue (I've had them since childhood; they aren't liver related). I remember that I last saw him 2 1/2 years ago because of nose bleeds. Yep, nose bleeds - just another one of the pesky little symptoms that may or may not plague other people awaiting liver transplants.

Here's what The Hepatitis Trust says about the condition:

Abnormal Blood Clotting (Coagulopathy)

The liver makes a number of coagulation (clotting) factors including prothrombin and fibrinogen. Most of these require the presence of vitamin K to function normally. Vitamin K, which is a fat soluble vitamin, in turn requires bile salts to be absorbed properly by the body. If the liver does not produce enough bile this will have a knock on effect on the capacity to clot blood. This can lead to so called thin blood and increases the risk of bleeding. Warning signs of mild coagulopathy problems include frequent nose bleeds, prolonged bleeding of the gums, and bruising easily. You should see a doctor immediately if any of these warning signs are present.

Before my transplant I didn't experience varices - bleeding in the esophagus that is extremely serious because it's unpredictable and can be fatal - yet I sometimes wondered if it were possible to bleed to death through my nose. My nose bleeds occurred randomly, without warning, and sometimes would not stop for extended periods (15 to 30 minutes, which seemed like a lifetime when I was in business meetings).

So, I saw Dr. M and learned that the procedure to address the bleeds required cauterizing some of the blood vessels running to my nose. As I frowned at that prospect, he went on to say that any relief would be temporary and the only real way to "fix" the problem was by having a liver transplant. Sure to his word, I haven't had a single nose bleed since my transplant (though, in retrospect, the cauterization procedure would surely have been easier than a transplant; at least I didn't have to do both!).

As awkward and challenging as they were, the nose bleeds didn't hurt. At most, my nasal passages felt raw at times and I used a nasal moisture product to ease the discomfort. On a "This Sucks" scale of 1 to 10, with 10 being the suckiest, I give nosebleeds a 3 to 4 (mostly because of the mess and how much they alarmed other people). I had other symptoms of end-stage liver disease that were FAR worse - and I'll tell you about them another time.