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.

Impassioned, Death-bed Plea Generates 20,000 New Organ Donors in Ireland, England

Famed Irish author and Emmy Award-winning scriptwriter Frank Deasy died September 17th, but not before speaking publicly about his illness and need for a liver transplant, which spurred 20,000 people to join organ donation registries in Ireland and England.

Deasy, who had a liver tumor, had been hospitalized in Edinburgh, Scotland while awaiting transplant surgery. A liver became available September 16th and Deasy's transplant got underway, but surgeons had trouble stopping his bleeding during the overnight operation (uncontrolled bleeding is a major complication for patients with end-stage liver disease) and, sadly, he died.

The weekend prior to his death Deasy wrote a first-hand account of his experienced that was published in The Observer under the headline, "My Wait for a Liver Transplant on Britain's Invisible Death Row: Frank Deasy Explains How a System in Crisis Could Be Transformed if More of us Registered for Organ Donation." He also spoke about his illness on Irish National Radio, prompting Irish Health Minister Mary Harney to praise him "for speaking out publicly about his illness and the importance of organ donation."

Hats off to Mr. Deasy for his willingness to talk openly about his need for transplant surgery and for encouraging people to be organ donors. Cheers to the readers and listeners who heeded his call and joined the rolls. Even with the myriad accolades Deasy won during his lifetime, his final public words may be the ones with the greatest lasting impact.

Photo of Frank and Marie Deasy, www.independent.ie

The Next "Thing" is Here: Cataracts

Yeah, just picture me: Knee-high hose with orthopedic old lady shoes, gray cardigan buttoned wrong and - drumroll - those square disposable sunglasses covering my eyes plus nearly one-third of my face. Pretty!

But seriously... I just returned from an appointment with my opthamologist, whom I must see annually now due to transplant medication and diabetes (one of my post-transplant annual doctor visits). In the 18 months since I last saw her my vision overall is maybe a little improved (!) but I have a cataract developing in my right eye. Oh, fabulous!

The doc saw nothing at my last appointment, so this is a new condition. I brought home a brochure and will read up on cataracts, about which I know virtually nothing. What I thought I knew was that cataracts usually belong to the world of the elderly and surgery is required to remove them. Sure, I turned 50 a couple of months ago and while that made me eligible for AARP, I never imagined that it made me eligible for cataracts. It's an insult, frankly.

Apparently, my "poorly controlled" diabetes is probably the culprit here. The doc said that the cataract's growth is hard to predict: It could fully cover the lens in six months or six years. But she said not to worry, telling me "You'll know when it's a problem because you'll have trouble seeing and your vision will be cloudy all the time, no matter what you do. I won't have to tell you because you'll call me complaining about it."

So, I'm off to learn about cataracts. As soon as my eyes return to normal, that is - my pupils are still quite dialated at this point. Guess I'll wait until I can take off my new sunglasses.

Photo by Jacob Power

(Hopefully) Big News Awaits at the AASLD Conference!

AASLD - the American Association for the Study of Liver Diseases - holds its 60th annual conference October 30 - November 3, 2009 in Boston. Yes!

I fear that I've become geekier than ever, because I'm pretty stoked about this upcoming meeting of many of the greatest liver docs and researchers on the planet. Some of the most useful information I've dug up about hepatitis C and liver transplants has come from the conference, where a great number of research projects and studies are discussed and/or results presented.

This year, for example, Vertex Pharmaceuticals will present data from studies that evaluated telepravir, which Vertex describes as a "investigational hepatitis C virus (HCV) protease inhibitor." The hepatologists at my transplant center have been following these studies and if they're interested, so am I, particularly about results from "a pooled analysis of PROVE 1 and PROVE 2 in 'difficult-to-cure' patients" - and I fall into that category. Click here to view the entire news release about the Vertex presentations planned for the AASLD Conference.

Of course, I'm a layman and novice and none of this may pertain to me and my situation. Nonetheless, it's cause for hope and I'll be optimistic for now.

Photo by Jean Scheijen, http://www.vierdrie.nl

The Ongoing and Urgent Need for Organ Donors: Donate Your Organs and Be a Superhero!

The unos.org website is a treasure trove of information about the need for and distribution of organs used transplant. I rarely visit it now, yet was a very frequent guest prior to my transplant as I tracked the number of people on the transplant waiting list at my transplant center and tried to gauge my priority versus others on the list.

Today I visited the site and sighed at the data posted front and center on the home page:

According to its real-time tally, 103,790 people are waiting for organ transplants as of 2:23 p.m. today. Year to date, as of September 18, 2009, 14,191 transplants had been performed with organs donated by 7,249 donors.

Organ donation is the ultimate gift any person could give. Given the extraordinary need for organs, every donor becomes an automatic superhero, a champion, a life-saver.

Won't you be a superhero? It's easy - visit www.organdonor.gov to learn how you can sign up. As noted on the website, "Each organ and tissue donor saves or improves the lives of as many as 50 people." What could be more super than that?

Photo by Charles Thompson

It's Official - I'm Disabled

This good (?) news arrived during my "vacation from illness" and I just realized that I hadn't posted a follow-up about applying for Social Security Disability. I'm officially disabled. If I may be so bold... it saved our butts financially. My one regret is not applying sooner; however, I kept expecting that my health would improve and I'd return to work. No such luck.

Not only did we begin receiving a monthly SSD payment, but we also received a year's worth of back payments (in one lump sum) that was effective from the date I initially applied for SSD. We paid off loads of bills, bought our kids a used vehicle and fixed up some things around the house. What a blessing! I cried happy tears when I learned that I was found to be disabled and really bawled when they told me about the back payments.

The calls from creditors have ceased, we won't lose our house and we might actually find a way to send our children to college. It's a tremendous relief and I'm ever so grateful.

Photo by Jeinny Solis S.

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

Steve Jobs - Back at Work

Earlier this week Steve Jobs appeared at an Apple Inc. product unveiling news conference, which was his first official appearance in public since a liver transplant earlier this year. In explaining his transplant surgery, Jobs said,

I have the liver of a twentysomething person who died in a car crash and who was generous enough to donate their [sic] organs.

I wouldn't be here without such generosity, so I hope all of us can be as generous and elect to be organ donors.

Liver transplants are uncommon and unlike cancer or heart disease or diabetes, which are more commonly found in the general population, liver disease and organ donation don't have the same level of awareness. So when a world renowned CEO like Jobs has a liver transplant, people notice. And they talk. And, hopefully, they sign up to become organ donors.

Glad to know you're faring well, Steve. Thanks for talking openly about your experience and urging others to become organ donors.

My Self-described "Vacation" is Over - Here are the Latest Lab Results

Let's start with the good news: Most of my blood work came back looking really good. Almost everything is in range and even my blood sugar, which has been far too high for the past six weeks (in spite of oral meds and insulin) was 121. Excellent!

Then there are the liver enzymes. I've set a personal record, my friends. ALT is a whopping 690 (normal range is 0 - 40) and AST is 519 (range 0 - 40). GGT is 494 (range 0 - 60), which is the best reading I've had since last December.

I'll have labs repeated in three weeks and we'll see what that reveals. Obviously, something is awry (the doc speculates that it's part of the ongoing Hep C flare-up, yet this begs the question, How long can a flare-up last?). I'll also work on losing weight and keeping diabetes under control; hopefully, it will reduce impact of metabolic syndrome/fatty liver.

Weight and diabetes are an ongoing struggle. I asked about a magic pill to help and my transplant coordinator suggested Weight Watchers. Ugh. She's right, darn her.

And Speaking About Who Should Have a Liver Transplant...

Just days ago a US District Court juddge ruled that an imprisoned inmate will not receive a liver transplant because the local hospital/transplant center determined he "was not a good transplant candidate, citing a lack of a support system, inadequate follow-up care in prison and other factors..." According to an article in the Las Vegas Review-Journal, the government was willing to pay for the procedure but couldn't find a hospital to perform the transplant.

Given my last post about priority ranking for liver transplants, let's consider this inmate's potential priority ranking. Ronald "Joey" Sellers has Hepatitis C and is in end-stage liver failure (the article didn't report his MELD score). His brother and son have offered to donate portions of their livers for a partial liver transplant, if this type of transplant is feasible. And, as noted above, payment for the transplant and first year expenses (estimated at $450,000) has been guaranteed by the US government.

Is it fair and/or reasonable that the US government would spend nearly half-a-million dollars for this life-saving surgery, given that federal prosecutors say they will "seek the death penalty against him" when he goes to trial?

Where's the logic in this - if, that is, logical considerations like expected transplant outcomes are a main factor for determining liver transplant priority?

A bit more about Mr. Sellers, who is "...accused of heading the Aryan Warriors inside Nevada prisons. Under his leadership, the gang distributed methamphetamine, sought to corrupt prison guards and assaulted fellow prisoners in racially motivated attacks that left one inmate dead, federal authorities said."

We've reached the deep end of the pool, my friends. Slogging around down here is bound to get messy - but it's far more interesting than what goes on in the safer, shallow end.

What do you think? How 'bout taxpayer outrage at spending this kind of money in this way, especially given the current health care debate. I volunteer with a woman whose brother-in-law died of liver disease because he couldn't pay for a transplant and to the best of my knowledge, he was an upstanding citizen who simply didn't have adequate (if any) health insurance. The government wouldn't pay for his transplant - but will cover Sellers'.

It's a lot to ponder before I have my first cup of coffee this morning.

Photo by Cyan Li