Jan 10, 2018 Latest post:
Jan 18, 2018
I wanted to provide an outlet for keeping family and friends informed of my condition as I head to the Mayo Clinic in Rochester Minnesota for Liver Resection surgery. We are driving on Jan 9, have pre op appointments on the 10th, and surgery on Jan 11, 2018. Sorry for the lengthy post, it’s a whole soap opera
Many of you know that I was admitted to the hospital in Oct 2015 with severe shoulder and abdominal pain. What first looked like gall stones, turned out to be large cysts on my liver, pressing on the diaphragm (that is what causes the shoulder pain). Surgery to open and drain 3 cysts provided relief and a diagnosis of Polycystic Liver Disease was given. (PLD is a genetic condition that is asymptomatic in 95% of cases. ). The surgeon indicated that there were no reasons for the sudden issues and no way to avoid further problem. Said Bad Luck was why I would be suddenly symptomatic at age 50, and suggested that Good Luck would be Key to avoiding future problems.
Fortunately, within a month, I found a support group on Facebook (there were less than 350 people worldwide in the group at that time). I learned that there is strong belief that estrogen and caffeine are in fact contributors to cyst growth, and that made sense as I had been on an estrogen patch since early 2015. I found a hepatologist in Cincinnati, but found out that he had not actually ever treated anyone with PLD, and also disagreed about estrogen being a factor. I realized that he wasn’t going to be too helpful for me if my symptoms worsened. It is important to note that, regardless of the size and quantity of cysts, actual liver function is not affected with PLD. Think of it like a healthy liver, coated in layers of bubble wrap.
The past 2 years I have become more symptomatic, negatively affecting quality of life. Could tell that Liver was getting bigger, pressing on lungs , stomach and colon. Knowing that there is a worldwide specialist at the Mayo Clinic, Jon and I decided to go get the facts. Nov. 27 we met with Dr Hogan who estimated my liver at 16 pounds (normal being about 3.5). The right lobe presses into my diaghram and extends to my hip bone. The left is somewhat smaller but still has quite a few cysts. We also met with a liver surgeon who suggested that I am a good candidate for resection.
Dr. Smoot at Mayo will be removing the entire right lobe of the liver along with the gall bladder and cauterizing the cysts on the left. The liver does regenerate, so he is hopeful that it will grow back without cysts. After a lengthy recovery, I am hoping to be back to normal. Stay tuned, and thanks for Caring!