I haven't posted for awhile. It's been difficult to write that my husband died at the end of October from complications of HCC. He had cirrhosis and Hep C. He was diagnosed with HCC in April 2005 but the liver masses had been visible at his first ultrasound in Sept 2004.
My husband felt well and had a good quality of life until early Sept 2006. Then ascites developed and we also found out that the tumors had spread to the lungs and lymph nodes. The ascites did not respond to diuretics, and my husband had to have the fluid in the abdomen drained (paracentesis). The draining became more frequent, about every 4-5 days.
He also began to have signs of kidney failure in addition to the liver failure. There were trips to the ER to correct very low sodium and high potassium (the BUN and creatinine were also high). My husband made the choice to not do hospice but instead to go to the ER for "tune ups" as he called it.
In the last weeks there were good times, too - he visited with relatives, enjoyed our garden, went to the Farmer's Market in his wheelchair (he had become weak from rapid weight loss, and the recurring ascites).
Two days before he died, my husband helped prepare a brunch for friends; we ate in the garden (although my husband ate very little). That night he began feeling nauseated, then had tremors in his hands and began slurring his speech.
In the ER he stopped talking but was still responsive (for example, drank medication -lactulose - when I held the cup to his mouth and told him he needed to drink it). Encephalopathy (brain fog) set in because not enough blood was able to flow through his liver (cirrhosis and too many tumors) and the toxins in the blood were just going straight to the brain.
He was admitted to the hospital. In the morning we found that he was bleeding internally (blood in loose BM), and soon learned that esophageal varices had burst. He was taken to intensive care and medication was injected into the varices to stop the bleeding but there were too many bleeding varices. By then, the encephalopathy and internal bleeding had also made him completely unresponsive. We decided to not continue to prolong his life (stopped meds to raise his falling blood pressure, etc). Our family and close friends were with him throughout that night in the ICU. He died the next day in the early am.
Throughout the HCC my husband did not take propranolol, a med for portalhypertension which had resulted from the liver tumors. The portalhypertension had caused the varices. Would taking propranolol have lessened the chance of the variceal bleed and given him a few more days or weeks? Or were too many body systems already failing? We'll never know. But he had told us just 3 days earlier that he was ready to "go" and that God was calling him. We do know he was at peace.
For those of you facing the end stage, our thoughts are with you. Ask your MD about propranolol or other meds that may lessen the chance of complications and still maintain quality of life. In the last stages, my husband's alternative meds included betaglucans, and coriolus (a mushroom extract), a low dose multi vit, zinc 30 mg, spirulina and some whey protein powder.
I miss my husband so much. Prayers for all of you and your loved ones. mjane