Sunday, March 13, 2005


Mom has developed portal hypertension which has resulted in esphogeal bleeding and ascites. Yesterday, the hospital drained two liters of fluid from her abdomen. My poor, little 74 year old mother looked 9 months pregnant. Sadly, the tap only reduced her stomach slightly - my guesstimate is that she's got 3-4 liters of fluid left - and she's scheduled to be drained again this afternoon.

Overall, my mom has been a real trooper with this disease. Most patients develop ascites within 10 years of the original diagnosis. Mom has gone 20 years. She's a fighter and has done everything offered by science to control this disease.

I know we've been lucky to hold onto her for this long. Yesterday, I read an obituary for a 38 year old who died from the same disease, Primary Biliary Cirrhosis. Neither did anything to induce this condition. It's triggered by the autoimmune system and doctors don't yet know the cause.

On Friday night, a lab tech was poking mom with a needle to draw blood. Her veins are so small and thin, the technician made 4 attempts on her hands and arms. Mom started sobbing from the pain, and I couldn't take it. I bolted out of the room and jumped in my car to drive, drive, drive away from all of this. I just couldn't handle it anymore. And the image of my mother, hugely bloated in the stomach, knees and feet and sobbing in pain just put me over the edge. So my husband sat with mom for 3 hours, until I could pull myself together and return to her room to kiss her goodnight. She started crying again and begged me to not leave her. I had to explain that it was midnight, time for her to go to sleep...that husband hadn't had dinner yet, that we were keeping her roommate awake, that we had to go home to get some sleep ourselves. Somehow, these excuses didn't feel valid...even with me.

I am so frustrated that this disease cannot be treated - only managed until the patient ultimately passes away or receives a liver transplant (which they don't do with patients over 70 years old).

I understand the whole life/death cycle, but I don't get why the process often contains so much pain and suffering. My mom's condition has helped me realize what a blessing it was for my sister Ann to pass away in her sleep. I miss her horribly, but I'm relieved that she didn't have to suffer.

I wouldn't wish this on anyone.