Life, Death and Liver Disease

One month ago today, my mother died from liver disease, which her doctor said was non-alcoholic fatty liver disease.  Her death wasn't a shock since she'd been suffering for a number of years, but I was surprised at how quickly her condition deteriorated. My mother and I haven't been close for many years, but her death leaves me feeling sad, depressed and very mortal.

I've been terribly negligent about keeping this blog updated. Here's where I stand in my journey:  I describe myself as being on "maintenance" status with my transplant center. By this, I mean that I'm not a candidate for any available treatments, so I have blood tests every three months and we track my MELD score. For the past few tests, my MELD score has remained constant - 12 - which is pretty good (relatively speaking). My next set of labs will be drawn in about two weeks.

There's much more to share, but I'm too blue to write about all of it now. Before I go, a quick shout-out to Beaux and his successful transplant. I'm encouraged to read about every bit of progress there is. To those of you awaiting transplant, may you find peace in your trial. And to those who have had transplants and are struggling to achieve a "normal" life, please know that awaits. Normal will be different, but it will feel oh, so good!

I'm Qualified to be a Doctor Now, Right?

In my last post I wrote about how uncomfortable I was approaching my GI doc regarding his colleague's diagnosis, which I believed was wrong (I saw the colleague because my doc was out of the office). The problem I was experiencing wasn't critical, so this was no life-threatening matter, but I wanted to see what could be done to treat it because I was so uncomfortable.

The other doc said I needed to undergo a four-hour (and I'm sure, pretty expensive) procedure to confirm his diagnosis. But I didn't think his diagnosis was on-point and wasn't willing to spend the money on the procedure. Still, I was concerned about not following doctor's orders.

I saw my doc when he returned to the office and he concurred that I didn't need to undergo the procedure because the presumed diagnosis didn't seem exactly right. Ha! So there - I could be a doctor!  

Crowing aside, I'm dismayed at my reaction - after all this time and all my experiences with healthcare professionals over the past six years, I'd like to think that I would be more comfortable and confident when asserting my opinion, even when it isn't the same as the doctor's. But I wasn't. How can I be a good self-advocate in light of this realization? It gives me much food for thought.

Photo by Sasha Dunaevski

 

Well, This is Another Fine Mess...

What's a gal to do? I received a diagnosis last month that I believe is wrong and I'm uncertain about how to handle the situation.

Here's the scoop: Had an appointment today with my gastroenterologist, who was unexpectedly out of the office. Rather than reschedule, I agreed to see one of his colleagues (my symptoms had been plaguing me for weeks and I hoped I could get them resolved this week). This doc was unfamiliar with my medical issues - and there are plenty of them - and I believe he did what he thought was best given the circumstances. But I believe his diagnosis was off the mark and I'm not inclined to follow his directions.

I was very uncomfortable about addressing my concerns with my doctor, with whom I had a follow-up appointment 10 days later. But a friend helped me frame it up, suggesting that I point out the complications of my situation and ask for my doctor's perspective. A much more graceful approach than I can sometimes imagine.

Fingers crossed. Let's see how this goes.

Have You Been Tested for Hepatitis C?

Last month the Centers for Disease Control and Prevention (CDC) proclaimed May 19, 2012 as the first ever National Hepatitis Testing Day and proposed that every US baby boomer (people born between 1945 and 1965) be test for Hepatitis C. Why this unusual mandate? Because the CDC says that two million, or one in 30, baby boomers are infected with the Hepatitis C virus. This group accounts for more than 75 percent of US adults living with the virus. 

Testing is critical because most people aren't aware that they're infected with Hepatitis C, which can damage the liver for years with few perceptible symptoms. According to the news release, “Identifying these hidden infections early will allow more baby boomers to receive care and treatment, before they develop life-threatening liver disease,” said Kevin Fenton, M.D., director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD and Tuberculosis Prevention.


The release goes on to state:

"Current CDC guidelines call for testing only individuals with certain known risk factors for hepatitis C infection. But studies find that many baby boomers do not perceive themselves to be at risk and are not being tested.

CDC estimates one-time hepatitis C testing of baby boomers could identify more than 800,000 additional people with hepatitis C, prevent the costly consequences of liver cancer and other chronic liver diseases and save more than 120,000 lives."

I hope this proposal is approved. I wish that circumstances were different before I developed cirrhosis and needed a transplant. Trust me... no matter how terrible the treatment might be, a transplant is harder. MUCH harder.

Photo by Wojciech Wolak

Beaux Had His Transplant!

After blogging long enough, I imagine that we'd all stumble upon (or be stumbled upon) people who share something in common with us, the reason our blogs exist in the first place. At least, that's how it's been for me.

One of the people whom I've become especially attached to is Beaux, a father, husband and name on a liver transplant waiting list until March 8th this year, when he finally had a transplant. Beaux is an inspiration to me, the way he persevered through myriad difficult symptoms caused by cirrhosis. His angel of a wife, Lo, blogged for a while after his transplant and kept those of us in cyberland updated about his progress.

But I'm worried. The last post on his blog, from Lo, was April 23. At that point docs thought he might have CMV.

Beaux, I'm praying for you, Lo and your daughters. I'm worried and would love a quick little "All's OK" or "Things suck."

I hope anyone who stumbles upon my blog will join me in sending good wishes and healing prayers to Beaux and his family.

Thanks.

A Simple Tip for Easier Access to Veins that Just Don't Cooperate

In the years since I started this blog I've posted more than once about how difficult it is to find a good vein in my arms for drawing blood or running an IV. (Usually I'm complaining about nurses or lab techs who won't listen to me and end up sticking me several times, without success - grrrr.)

Recently, a really wonderful lab tech suggested that I run hot water over my hands for a minute or two before she attempted the draw and, Eureka!, it worked like a charm. For every draw since then I've used the hot water technique and it's made the experience SO much better.

Yesterday I had a CT scan with contrast and we ran into the same issue - my two good veins weren't an option for several reasons and the veins on the back of my hand were tiny and rolling. Then I remembered the hot water trick and BAM!, the vein worked. The only downside was that they didn't warn me how the contrast was going to burn in my vein going across my hand and over my wrist. I literally yelled, "Oh, shit!" Frankly, they were lucky I didn't drop the f-bomb (I have a terrible potty mouth). Lord, I hate it when I'm not told to expect something in advance. No matter how bad it's going to be, just tell me or I'm going to hate you and never trust you again.

I digress. This post is to recommend the hot water trick for people like me, who have crappy veins and suffer because of it. I hope this works as well for you as it has for me!

Photo by William Stadler

Hepatitis C and Baby Boomers

Hepatitis C has made headlines recently, following the release of a study by the Centers for Disease Control and Prevention (CDC) that, among other things, revealed that one of every 33 baby boomers (people born between 1945 and 1965) is living with hep C. Furthermore, research reported in the Annals of Internal Medicine showed that three-fourths of the approximately 15,000 people who died from hep C in 2007 were between the ages of 45 and 64.

These findings and more were reported in an article in The Wall Street Journal, Hepatitis C deaths up, baby boomers most at risk. Some of the notable items in the story include the following:

"Deaths from liver-destroying hepatitis C are on the rise... "

"About 3.2 million Americans are estimated to have chronic hepatitis C, but at least half of them may not know it."

"In fact, in 2007 there were 15,000 deaths related to hepatitis C, higher than previous estimates — and surpassing the nearly 13,000 deaths caused by the better-known AIDS virus."

The CDC is deliberating "... whether to change testing guidelines to recommend that anyone born between 1945 and 1965 get a one-time screening."

I hope hep C screening becomes more widely adopted. By the time I experienced symptoms caused by hep C, my only option was a liver transplant. Discovering the disease early and getting treatment using one of the promising new, more effective drug regimens could save many lives.

Photo by Vangelis Thomaidis