Monday, January 27, 2014

Years After My Liver Transplant, Am I Simply Waiting to Die?

I wrote this on November 18, 2013, but never got around to posting it. So much has happened over the past month - things I want to share on my blog for other liver transplant patients and people who have Hepatitis C - that I believe it's worthwhile to post this now.

On December 3, 2006, I had a liver transplant that saved my life. Afterward, I was exceedingly grateful. Because of the transplant I knew I’d be able to continue to raise my children through the tough high school and early college years, and hopefully enjoy that ride with my husband, Gene.

In general, I’m an optimist: I embrace life with gusto, cherishing moments, loving family and friends, and laughing and learning along the journey.

But I now realize I no longer live my life this way. Instead of making plans for the future, I have spent the last seven years trying to survive an unending onslaught of procedures, treatments and bad news about how Hep C is wreaking havoc on my new liver. It's been exhausting, frustrating and depressing.

Instead of living it up, I've been waiting to die.

I had this "ah ha!" moment over the weekend and was shocked. I consider myself to be an optimist, a "the glass is half-full" person. I'm so fortunate to have had this transplant. When did my spirit break? 

Photo by Julia Freeman-Woolpert

Thursday, September 12, 2013

Seven Years After My Liver Transplant, What Lies Ahead?

In spite of my recent blog whines (apologies), I'm still amazed at the miracle of modern medicine. At the beginning of December I'll celebrate seven years with my transplanted liver. SEVEN! I would never have imagined that this liver, which vexed me with so many complications for several years after my transplant, would prove to be strong enough to last this long. Granted, I have cirrhosis now (curses, Hepatitis C!) yet I've survived longer than I expected and I'm incredibly grateful to be here.

That said, do I have seven more years here on Earth? I doubt it, but there is little information for patients like me who are still alive many years after transplant. Furthermore, I want information that addresses Hepatitis C and cirrhosis in my transplanted liver.

For me, not knowing what to expect is torture. I'd like to know if I'll experience the same physical symptoms I had prior to my transplant. Also, I'm curious about my MELD score, which has been fairly consistent for the past two years. Will it slowly increase? How much longer will I live - I don't want an exact answer to this question but a general estimate would be helpful.

I'll continue to search for information and will share it in this blog.

Photo courtesy of Bayek, London, UK

Monday, June 24, 2013

Good Grief! It's Only Cataract Surgery.

In a few hours my husband will take me to a local Ophthamology Surgery Center and my doctor will remove the cataract in my right eye that has grown and now affects my vision. The procedure sounds relatively simple, they're giving me enough sedation that I won't flip out when the doc cuts into my eye and considering the myriad other procedures and surgeries I've had, the surgery and recovery should be a breeze.

That said, I've had several brief episodes today where I was on the verge of tears about the surgery. Why? There seems to be no logical reason. It's such a minor procedure. I compare it to the challenge that faces one of my best friends from high school who recently learned that she has breast cancer. THAT'S worth crying over.

I believe I'm experiencing medical exhaustion. Hmm... does such a thing exist? I dread the whole pre-op process, IV stick, answering the same questions every doc asks, etc. I've done more than a lifetime's worth of this nonsense and just feel so overwhelmed and tired of it all.

Now that I've had a little pity party, it's time for me to put on my big-girl knickers and deal with the challenge in front of me. Thank you for letting me whine. The next post will be more useful and relevant - promise!

Photo courtesy of Lauri Koski

Friday, March 1, 2013

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!

Monday, September 24, 2012

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


Monday, August 6, 2012

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.

Tuesday, June 19, 2012

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