A friend Anne, was in need of a small piece of liver; someone else’s liver. She is incredibly stoic, showing a smiling face, shielding her deep inner strength. Anne is a tiny soft-spoken Japanese-American lady with two children, a young boy 11 and a girl 15. Her small size makes her huge cystic liver appear larger than mine ever was. Anne traveled all the way to the Mayo Clinic in Rochester, Minnesota. She is not a candidate for a liver resection. The liver has 8 sections and two of her non-cystic portions are at a far distance from each other, on opposite ends. That was not what presented the greatest risk. Following such extensive liver surgery, her blood vessels would not remain open to feed and nourish her tiny liver remnant. She had made plans to talk with the transplant team to discuss her options. Annelives in Hawaii. The entire time Anne awaits an available organ, she will have to live away far from home as Florida is many plane hours away.

We with PLD polycystic liver disease remain very low on the organ transplant list because they say our liver never fails. Anne has PKD polycystic kidney disease and her kidney functioning is around 40%, this makes her not eligible for a double transplant. If any have considered becoming altruistic donors, I would urge you to help us now. We have nowhere else to turn but toward you. The transplant centers will not give us any priority on organ waiting lists.
My heart really goes out to individuals with liver cysts. I am one of these individuals. I am a lucky one. For me the liver resection worked well. It took a long time to recover, but I am healthy as can be.
Anne used to surf the waves in Hawaii, but with severe cystic liver disease, it is difficult to lie on a surfboard and paddle. Anne tires very easily caused by anemia and carrying around a forty pound cyst filled liver. She gets breathless quickly. The liver presses against her diaphragm and causes her lungs to remain in a partially collapsed state. She cannot take a full breath. She is unable to eat much food. A cyst filled liver compresses her stomach, creating early satiety, severe bloating, deep pains and sometimes the food she eats, just pops out of her mouth from the continuous stream of slowly increasing pressure against her internal organs. We with PLD have become very creative in our attempts to digest and obtain sustenance from the foods we eat. We try different twisted postures to relieve the distension or sometimes just doing a gentle backward bend similar to a limbo dance allows room for a little added expansion for a food-filled-stomach. This aids digestion and increases nourishment.
Here in Hawaii there is no way they will even consider listing Anne for a transplant. In Hawaii we have 30% more end stage kidney disease than any other place in the nation. We probably have more liver disease as well .I spoke with Janine, who was also at the Mayo. She was discharged from the hospital following her liver resection only after 6 days. She is a real ball of fire. She said to me she didn't feel like a ball of fire and she was very very tired and sore. I am amazed at how quickly Janine has recovered. She will remain in Rochester for two additional weeks. These two ladies happened to be in the same place at the same time with two different possibilities.
It happened that last year, I was at the Mayo and met Meg in the intensive care unit. It was Thanksgiving Day. She is a beautiful courageous young woman in her early thirties who had just had received liver resection surgery.
There was another lady who also appeared on the scene. She is a public health nurse and I spoke with her prior to my liver resection almost ten years ago. She met Janine in person. For this nurse it had been 18 years since her liver resection and she is looking good, her liver cysts have not re-grown. In the UK, another individual somehow managed to get a liver transplant for cystic liver disease. She is doing great.
With PLD polycystic liver disease they say our liver will rarely fail. Mine did, a few others I know also experienced this. But this is not what kills us. What kills us is the mass, this huge mass of growing liver cysts that continually enlarge, fill with fluid, expand increasing the liver size. This is in part why cystic livers rarely fail. The liver is the one organ that will re grow. It regenerates itself. As the liver is replacing cystic portions with normal liver tissue, the resulting mass is a huge heavy cyst filled liver. We look as if we are in the tenth month of pregnancy. Males with severe cystic liver disease take on this appearance - small thin scrawny upper body and huge protruding bellies. Livers can reach 40 pounds and more of pure water filled cysts, causing a normally smooth liver to become hardened, resembling a rock that slowly moves forward filling the belly and by its force crushes organs in its path, displacing ribs, spinal bones, hip joints, stomach, intestines, blood vessels, blocking blood flow, pushing everything out from within the inside of our now distorted human body.
A few of us with severe polycystic liver disease have experienced our tissues falling easily through any bodily orifice pushed by the force of a growing living cystic liver mass. It presses on, squeezing bones, blood vessels, nerves, and organs. Some develop pudendal nerve entrapment, a very painful syndrome. Others experience chronic pain. You never hear of these complaints, for we are a very stoic group of individuals. We have continually been told by health professionals that there is not much to do for liver cysts, other than sit by and watch our livers grow.
I have heard of one woman who was repeatedly told there was nothing to do for her. One day her cystic filled liver pressed and pressed against her ribcage until it broke a piece of her rib. The rib fragment punctured her intestines and she died. Another friend could not eat. The doctors gave him nourishment through a catheter. Eventually he became weaker and weaker and died from malnutrition. Another friend developed an infection within her liver cyst. The doctors tried so very hard but infection within a liver cyst is almost impossible to treat successfully. She too died.
Waiting patiently for a liver transplant that does not seem to happen has become the fate of a many of us who are not eligible for a liver resection. It is a rare event for cystic livers to fail. This makes transplant less and less an option for us with PLD Polycystic Liver Disease. We need your help to move us up on the organ transplant list.
I urge you to take a moment to strongly consider if you or if a friend might be willing to give us a small portion of their liver.

This is dedicated to Anne (died age 36) , Leo (died age 62), Vikentia (died age 57) and Brenda (died age 47) all who died before they could receive a liver transplant or a liver resection for severe PLD Polycystic Liver Disease. There are many more in this dedication - more of us are desperate need of help from Severe Polycystic Liver Disease. We have to first convince our families that we need help. Next we must convince our doctors that we are in need of help and now we must convince the organ donor teams that individuals with a cystic liver sometimes need a new liver not because the liver stops functioning but because of its shear mass, weight and pressure that may eventually lead to our demise. Thank you for reading this. Please consider helping us.

Death ends a life, not a relationship.

- author unknown -

The power of water - for any who doubt the damage that can be created by water filled cystic sturctures.