Wednesday, September 30, 2009

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 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.

1 comment:

Anonymous said...

I'm glad I found your blog! My husband is on the liver transplant list. He was on "hold" on the list due to be hospitalized for the FOURTH infection he's had this year! He has Wilson's disease, which caused the cirrhosis. He's been on the list for about 1 1/2yrs now, and we are growing so very tired!! Your list of symptoms is very complete, better than most I've found on the net. I was searching for someone who may have documented their journey, before and after transplant. Wendy (