TheLiverDoc™@theliverdoc
Yesterday, my patient, 48 years old, died, surrounded by his wife and two children. The eldest is a son, 17 years old. At such a young age, he was thrust into caring for his father who became critically ill with cirrhosis and advanced liver cancer.
He sent me a message thanking me for my service because I did not stigmatize his father for being “an alcoholic,” when everyone else from his paternal and maternal side did and almost every doctor did too. He said that the only time he felt safe, like inside a little sanctuary, was when he was at my outpatient office where no judgements were passed and jokes were made in the face of death.
I remember that my patient would still linger on, in my room, even after I had completed my consult with him and bid goodbye for a hopeful follow up. We never spoke of his illness or death. We spoke of small things that he was worried about and bigger things that made him happy.
I cared for him, for five months, from the diagnosis of his advanced liver cancer until his death, yesterday. His cirrhosis was diagnosed three years ago. It was at a time when he suffered from alcohol use disorder. He had jaundice and fluid in his abdomen (ascites) and we got him better and he quit drinking. For two years everything seemed fine, until the time when his daughter was diagnosed with depression. Her schooling suffered and when daughters cry, fathers lose it. The mother held them all together, but it was still a big burden on them all. He went back to drinking – for a year and I lost contact with him.
Alcohol use is never a choice. It is a circumstance. People do not look forward to being “an alcoholic,” but circumstances make them. During the whole year he was drinking, sometimes erratically, but almost always bingeing, he would do one small thing. Every week, he would do a liver function test and see that things were fine and resume drinking.
But complications of liver disease can happen even with a normal liver function test. Liver tests become abnormal when patients pass on to 4th, 5th, and 6th stages of cirrhosis.
Dreadful complications come even in the first couple of supposedly stable stages of cirrhosis where everything on paper looks fine, but sinister beginnings happen within. When I met him again, 5 months back, his main complaint was a nagging abdominal pain that was not going away. His liver tests were fine. His tumor markers were fine and an ultrasound, pretty much normal except for cirrhosis changes, except for one small, but terrifying finding. The portal vein, the main blood vessel supplying the liver was blocked and expanded with large clots.
A CT scan told a whole different story. He had a massive liver cancer that ate up almost his entire liver and then went on to spread into the blood vessels and onto the lymph nodes. With an apparently normal liver test, in an apparently normal looking man, we diagnosed stage 4 liver cancer.
I did not know how I was supposed to deal with this situation. The man would die in 6 months. I knew this. The mother was home with the daughter and taking her for sessions to the psychiatrist and this young boy of 17 years had suddenly become the decision maker and primary care taker. I have never had such a young person as the alpha in-charge of primary care of my patients. But the young boy surprised me.
I have not seen even adults focus so much on the challenge at hand. When his time came, the boy knew it, and he had to fulfil his father’s last wish. He quickly discharged him from hospital, took him home for him to spend some time in the place he built for them, their real sanctuary outside of my OPD, and when he was gasping for air, he took him to a small hospital nearby where he died in a room surrounded by his family.
His liver tests were normal even when he was dying. Sometimes the liver function tests deceive. If you have a drinking problem or if your family member has a drinking problem, and there is (known or unknown) pre-existing liver disease, please consult your doctor/specialist who will do more to find terrifying things in hiding so that challenges can be tackled much earlier to preserve life, in togetherness.
“Be a lamp, or a lifeboat, or a ladder. Help someone heal. Walk out of your house like a shepherd.”
- Rumi.
You are not alone.
