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:
- 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.
liver transplant. What a wonderful occasion! There have been plenty of times when I wondered if I'd make it this far, so celebrating the day is a blessing.
My recent liver biopsy revealed a bit more fibrosis and more inflamation, due to the Hepatitis C. But that was all. I was expecting FAR worse results... and as it turns out, so was my transplant coordinator. We exhaled audibly and collectively, and had many things to be grateful for this Thanksgiving.
For me and my doc, the objective continues to be to keep this liver as healthy as possible while we await a cure. So two days ago my husband and I returned to the transplant center and met with the woman who oversees liver treatment for Hep C, and after thoughtful discussion, we agreed that I will try Interferon/Ribavirin treatment again. When I took the meds two years ago, starting just eight months after my transplant, it didn't "clear the virus" (I continued to have a measurable Hep C viral load). While the chance of success this time is low, it's the only alternative available to me.
I'll be on treatment for 12 weeks, the length of time during which my viral load should either drop SIGNIFICANTLY or, essentially, be undetectable. If the pegulated Interferon treatment doesn't work, I can try a more aggressive treatment that requires Interferon injections daily (instead of weekly, as in the pegulated protocol). I'm going to do some homework on these options and I'll post what I learn, so watch for more information.
Next year could be fairly rough, because the pegulated Interferon has many side effects (flu-like symptoms): the more aggressive treatment stands to be pretty miserable. But I'm ready to fight the good fight. (Please remind me of this when I moan and wail five months from now.)
January 19 is the target date, when I take my first injection. Fingers crossed, knees bent in prayer. Please, God, let this medicine protect my liver.
The miracle of modern medicine is just one of the many blessings I'm counting this Thanksgiving. May you and yours also enjoy blessings and abundance.
Photo by Sanja Gjenero
Much like Alice, I find myself puzzled these days. Alice's strange experience was her travel through Wonderland. For me, it's the liver transplant journey. It's been confusing for both of us.
a follow-up to last month's labs wherein I set a record-high ALT and AST. Blood was drawn for transplant center's standing lab order and a handful of other tests, as well as a few tests for my local internist; altogether, the tech drew about 10 tubes (no exaggeration). Additionally, I had to bring in 24-hour urine collection (THAT was fun) which will be used to gauge kidney function - an important factor to check for liver transplant patients because many experience kidney damage after the transplant.
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:
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."
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.
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