POLYCYCTIC KIDNEY DISEASE DIET

Transplant

Liver Transplant

A liver transplant has two (2) possibilities: a cadaver transplant and a live donor liver transplant. Cadaver transplants are difficult to obtain, because usually PLD polycystic liver disease livers do not fail, but they can become life threatening. Our MELD scores do not reach qualifications for a transplant. Report the following to your transplant centers to help move you up the waiting list: several individuals have died from PLD. It is indeed a life threatening illness. One was a woman in Japan. She had massive liver cysts. The doctors told her cystic livers never fail and there was nothing to do. Her liver continued to enlarge and grow until (as many of us have noted) the bones of the ribs began becoming slightly deformed. Eventually one of her ribs cracked. The broken rib pierced her bowel and she died from septicemia, blood poisoning. Another individual developed HVOO, hepatic venous outlet obstruction. Blood from the body in the inferior vena cava (the biggest vein in the body) became more and more obstructed until it began to clot and she died. A gentleman I knew developed severe emaciation and muscle wasting. Everything he ate came back up. There was no room for his compressed stomach nor his intestine to absorb any nourishment from the food. They gave him feedings via a stomach tube. They tried to feed him hyperalimentation through a big blood vessel. Eventually he died of malnourishment and total body shut down. There was another death from PLD. A woman 50 y/o developed an infection within the liver cyst. The doctors tried very hard to clear up this infection and were unsuccessful. She was in Greece and died from liver failure directly related to her cystic liver. I do not report any of this to frighten anyone. I say it to add to our collective knowledge about this disease. It upsets me terribly when I hear of individuals being told there is nothing to do. Another is my dear friend Anne. She had ADPKD along with massive liver cysts. She was not a candidate for a liver resection while awaiting a call for a liver transplant her kidneys failed suddenly. There was nothing to do because her massive liver would not allow for peritoneal dialysis. She died within the week from massive organ failure. My oldest sister died long before the advent of dialysis, transplant or imaging. The doctors opened her expecting to find cancer and found massive polycystic liver disease and polycystic kidney disease. She died within the week. The diagnoses of liver cysts can occur in childhood and even prenatally, especially when ARPKD is present, a recessive form of PKD polycystic kidney disease. With this disease, it too is most commonly found in children, but not always. I have communicated with a woman who discovered ARPKD as an adult. She was 37. Just recently, we received word that Joe, age 67, received a dual transplant, kidney and liver, from Omaha, Nebraska. Congratulations Joe!

Live Donor Liver Transplant

Live donor liver transplantation (LDLT) is a where a living person donates a portion of liver to another. The feasibility of LDLT was first demonstrated in the United States in 1989. The recipient was a child, who received a segment of his mother's liver. Since that time, LDLT for children has enjoyed wide success and many pediatric programs use this technique. In the pediatric experience, survival of both the recipient and the transplanted liver (graft) at one year is about 90%. Donor complications have been very few. A rising population of adult patients awaiting liver transplantation has led to the application of LDLT for adult patients, and the preliminary results have been very encouraging. Only a handful of centers in this country perform the procedure.

How long will a liver transplant last?

A study of over 2702 liver transplants in the UK showed for women it was 26 years.

Liver transplant performed without the need for blood

World's First Adult-to-Adult Live Donor Liver Transplant Without a Blood Transfusion - June 15, 1999. Some said it could not be done. Others simply refused to attempt it. But Bill Jennings needed a liver transplant and he needed the procedure to be performed without the transfusion of blood or blood products. Neither his end-stage liver disease nor his religious beliefs as a Jehovah's Witness would allow for anything less. Jennings already had a donor lined up: his older brother Scott, who was both able and willing. The problem was finding a doctor who would give Jennings a chance at a normal and healthy life while still respecting his religious convictions.

FDA issued warning

Sirolimus has a warning for liver transplant recipients. Rapamune

We are  sharing our experiences with PLD Diet, an adjunct diet to consider  trying to complement a physician's prescribed medical therapy. Think  about testing this only with your doctor's prior knowledge, who can  adjust it, according to your own uniqueness by adding to your current  treatment.

Medical Disclaimer

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