What I Wouldn't Give for a Good Night's Sleep...

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following:

Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.

Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

What You Should Know About Liver Cancer

Hepatocellular carcinoma, or liver cancer, is something that's crossed my mind - wondering if I might ever have it - but I've never sought information about it, until now, that is. The US Department of Veterans Affair website offers information about liver cancer, including this list of "Things to know about liver cancer:"

* Liver cancer can cause death in a person with cirrhosis.

* Patients with cirrhosis resulting from any cause, including hepatitis C, hepatitis B, and alcohol use, have a greater risk of developing liver cancer.

* Liver cancer is one of the most common cancers in the world, especially in Asia and Africa, and it is becoming increasingly common in the United States.

* Biopsy refers to extracting a small sample of tissue with a hollow needle and testing it for liver cancer. A biopsy is sometimes needed to make a diagnosis, but imaging and blood tests can usually determine whether liver cancer is present. Biopsies of liver masses can be difficult to perform and there are some risks involved.

* Liver cancer can be treated if it is detected early, but the treatment is very specialized. Patients should discuss the details thoroughly with their health care providers.

* One excellent treatment for early-stage liver cancer is a liver transplant. This is a complicated form of treatment, because a patient first needs to be a good candidate for a liver transplant, then be evaluated at a liver transplant center and placed on a waiting list, and finally, be well enough to undergo a transplant when a donated liver becomes available.

According to the U.S. National Library of Medicine, which is overseen by the National Institutes of Health, "The (prognosis for liver cancer) is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery. If the cancer cannot be completely removed, the disease is usually fatal within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months."

Photo by Andrew Richards

Liver Cancer? Hepatitis C and the Alpha-Fetoprotein (AFP) Blood Test

In my August 12, 2011 post about the results of my recent blood tests, I mentioned the alarmingly elevated level of a new blood test that my doc ordered - the Alpha-Fetoprotein (AFP) test - which is an indicator of liver cancer. When I heard "AFP" I thought of a blood test I took when I was pregnant with both of my children. I've learned that the tests are one and the same.

According to an article from Gastroenterol that was cited on HCV Advocate’s hepatitis blog:

Alfa-fetoprotein (AFP) is a blood test that is used widely to detect abnormalities that may be an indication of the presence of certain types of cancers... In viral hepatitis it is a test used to indicate liver cancer... In people with chronic hepatitis C most providers will generally start monitoring for liver cancer using the AFP test and liver imaging once someone has developed severe fibrosis or cirrhosis.

As I continued my search for information about the AFP test, liver cancer and how to interpret AFP test results for people like me who have Hepatitis C and a cirrhotic liver, I found a web page about hepatic tumors written by D. Montgomery Bissell, MD, for Gastroenterology students at the University of California, San Francisco. He stated the following:

As a surveillance tool, AFP is readily available and inexpensive but has many limitations. Its specificity is poor, particularly in patients with chronic hepatitis C, in whom the value often exceeds normal (in the 5-100 range, presumably on the basis of regenerative activity). False negative results are not infrequent, which is the reason for including basic imaging in routine HCC surveillance. The utility of AFP is largely two-fold: (1) A progressively rising value has much greater specificity than a single test and requires a search for HCC; (2) AFP >500 is assumed to reflect HCC even if imaging is negative, and qualifies for transplant listing. Also, a very high AFP (>1000) suggests vascular invasion and metastasis.

Given this information, my AFP test result of 106, when the normal range is about 0 - 8, isn't something I need to be concerned about today. If the level continues to rise... well, we'll cross that bridge if we ever get to it.

Photo by Franco Giovanella, www.fotolog.net/giovanella

Tackling the Itch: A Medication That Worked and the Skin Products That Helped Most

For many weeks I've been vexed by severe itching. The condition is called pruritis and it's caused by my poorly functioning liver. The two meds I tried so far didn't work, so my doc prescribed a third: Cholestryramine. At last, we found something that works! What a relief. Few things are more uncomfortable than incessant itching and I'm very grateful for relief.

Note: Mark left a comment on my June 24, 2011 blog post, recommending Cholestyramine. You were right - thank you for your suggestion!

Pruritis is a condition that isn't alleviated by topical treatments. Calamine lotion and products like it are ineffective. Nonetheless, I kept my skin well moisturized - why run the risk of dry skin itch compounding the existing pruritis, right?

Here are the moisturizing products that I've been using, all of which I highly recommend:

Skin Free makes my favorite skin care products. They're super-rich without being oily. The body balm is a great all-over moisturizer that I usually apply in the shower before toweling dry after bathing. And the butter stick is the best smelling moisturizer I've ever used.

My every-day, all-day-long lotion is made by Gold Bond. Obviously, Gold Bond isn't just for just for jock itch. I use the Ultimate Healing Skin Therapy Lotion. As the company states, this lotion has "... aloe to heal dry, problem skin." It's the thickest lotion I've ever used and while it costs more than other brands, to me it's well worth the money.

Lastly, I recommend Eucerin. I first used the Original Moisturizing Creme in the hospital after my liver transplant, when it was given to me by docs. I was told to put it on my lips, which were scraped and terribly scabbed by tape used to hold tubes in place. It was very healing and I'm happy to say that my lips are as good as new.

My Blood Test Results Don't Make Sense

At the beginning of the week I had blood drawn and today I received a copy of the results. Some of the numbers were alarming and others had me shaking my head in disbelief.

The good news - most of the tests in my hepatic function panel (ALT, AST, GGT, etc.) are better than they've been in ages. Seriously? My liver is cirrhotic, but on paper, these tests indicate that it's doing fairly well (for me, that is - it's all relative).

Other results aren't so wonderful. My MELD score has increased to 12, a jump of three points in five weeks. The docs are chalking it up to an elevation in bilirubin and don't seem too concerned. I'm praying that it's not a trend.

Additionally, my doc is running more tests now, one of which is AFP serum (it indicates the presence liver tumors). The normal range is 0 - 8.3 and mine is 106.2. ONE ZERO SIX POINT TWO. Holy crap! My doc believes the number is elevated because of my aggressive Hep C, not because I have a tumor. Six weeks ago I had two CT scans and neither showed a tumor, which is a good sign. But I'd be lying if I didn't admit that I nearly fell off of my chair when I saw that result. I'm grateful that it had been explained to me before I saw the results.

Up next: More blood work in three weeks and an endoscopy (where a scope is run down my esophagus). And I'm not certain what else, but I'll keep you posted.

Photo by Heidi Marasigan

Walgreens Came to My Rescue Today and Gave Me Great Customer Service -- United Healthcare's Specialty Pharmacy SUCKS

Nothing like a bucket of bad customer service to kick me out of my misery. Today, Walgreens was able to solve a problem in about ten minutes that UHC's in-house specialty pharmacy hasn't been able to fix in a week. My local Walgreens pharmacy has come through on so many issues - large and small - over the years that I am VERY pleased to brag about how good they are.

Conversely, there are a couple of meds that I'm required to order through my United Healthcare's (UHC, my health insurance provider) own specialty pharmacy. Although I've spent at least about an hour each day talking to a customer service rep trying to fill the order for my immunosuppressants, the matter is unresolved. Each person was nice, but no one got the job done.

At this point, the whole matter has become a comedy of errors and UHC looks like one of the worst-run companies aaround.

Walgreens, however, has been awesome.

And someone at UHC is going to receive a phone call from me, and (forgive me) shit WILL hit the fan!

No! I Wasn't Ready for This!

Nine.

That's my meld score. My transplant coordinator told me and my husband in early July, as my release from the hospital for hernia surgery was being coordinated. (It was repeat surgery to try to fix the incisional hernia that developed during my original transplant: The surgery didn't work then and doesn't seem to have worked this time, either. But that's another story.)

We had my surgeon do a liver biopsy while he was in the neighborhood, so to speak, and the lab review showed that my transplanted liver is cirrhotic. So my coordinator did some math and I'm a nine.

I've spent the past month trying to find a graceful way to share this news and I'm still struggling. The hardest part - and oh, my God it was so hard - was telling my kids. They are older teens, but they still need a Mom. It's almost certain that I won't be around long enough to see them graduate from college, or marry or have granchildren. That's just not fair.

There's also so much I want to do with my wonderful husband.

I'd handle this better if I could reach a point where I'd focus on the many tasks that need to be tackled, like a will and organizing papers. However, the past five weeks have been spend recouperating. Beyond that, I still can't talk about it without crying.

What about clinical trials? Those new Hep C meds? A second liver transplant? All very unlikely for many reasons, which I'll explain in future posts.

Please excuse the pity party. I'll find helpful info to share soon. I wish every person reading this blog good luck because there's a lot of it to be found.

Photo by Alaina Cherup