PKD DIET

Treatment PLD

Surgical Treatments de-bulks PLD

Medical Treatments to slow down PLD growth

Surgical Treatments for PLD Pain Relief

Through a gathering of our collective information, several helpful Polycystic Liver Disease specialists have emerged. Dr. Vicente Torres at the Mayo Clinic in Rochester, Minnesota USA, is one such person; he is a beacon of light amidst a fog of uncertainty surrounding PLD. Listen to a PLD lecture by him. Dr. Torres is a knowledgeable physician, a great human being and a very caring person. His office generates most of the Polycystic Liver Disease research. An excellent polycystic liver resection surgeon is Dr. D. M. Nagorney also from the Mayo Clinic. It is through these two medical pioneers that the possibility exists for us to have liver resection surgery for PLD. Dr. Ubara in Japan achieves about a 40% reduction in overall polycystic liver size with hepatic artery ablation a procedure he has performed for PLD. If liver pain becomes severe requiring opioids for relief, there is a procedure called splanchnic denervation useful for relieving chronic pain that opiods fail to touch. A few well chosen unique individuals have undergone extensive laparoscopic liver cyst de-roofing for pain. This procedure provides temporary pain relief and oftentimes needs repeating.

We are hopeful that Octreotide, Lanreotide, Pasireotide (all somatostatin LAR analogues) clinical trials will prove to shrink liver cysts thus opening the door to other non-surgical treatments for PLD. Somatostatin LAR clinical trials are currently taking place in Italy, Belgium, the Netherlands, and at the Mayo Clinic in Rochester, Minnesota USA. USA trials are headed by Dr. Marie Hogan). Dr. Drenth in the Netherlands is another PLD researcher currently conducting PLD clinical trials with lanreotide in Holland and Belgium. Negri Mario Institute in Italy has an ongoing three year follow up octreotide clinical trial.

Liver Dialysis Useful for Hepatitis C Following Transplant

Jan-Feb 2004 liver dialysis has now become available on a limited basis. According to Hepatitis central it has received FDA approval. Some sites within the USA are offering liver dialysis include:
Tulane
Emory University
Thomas Jefferson University in Philadelphia
University Of Tennessee Bowld Hospital
University of Texas- San Antonio
Loyola University
University of Iowa
California Pacific Medical Center (in San Francisco)
University of California at San Diego
New York University
Oklahoma City
Mayo Clinic Arizona, Jacksonville, Rochester and more
MARS London Clinic in the UK for liver dialysis
Liver dialysis is only for short term use and seems helpful for treating hepatitis C.

PLD Outcomes

From this article: The presence of symptoms, elevated alkaline phosphatase, and cyst complications are associated with an invasive treatment requirement. Hormonal replacement therapy is associated with presence of symptoms and enlarged cystic liver size. Patients with BMI basal metabolic rate greater than 25, tend to be susceptible to invasive treatment requirement and further complications. The proportions of complications are higher in fenestration with hepatic resection and in second invasive treatment groups. Liver resection is more frequent after open fenestration.

Octreotide Response Predictability

Octreotide is an experimental drug used to reduce liver volume. In 153 polycystic liver disease patients from three international centers, all were treated with octreotide or lanreotide to reduce liver volume. Mean reduction in liver volume was 4.4%. Elevations in a liver enzyme, alkaline phosphatase seems to be a predictor of patient response to the drug octreotide. Elevated baseline alkaline phosphatase was associated with an increased liver volume reduction during therapy trials.

Some Things To Try

We are  sharing our experiences with PKD/PLD Diet, an adjunct diet envisioning it complementing a physician's prescribed medical therapy. Consider testing this with your doctor's prior knowledge, who can  adjust it according to your own uniqueness by adding it to your current  treatment.

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