Jo,
I am responding for Diane. She is in an assisted living facility and is extremely weak right now, and unable to respond.
From your description of your symptoms, it seems as though you may be ready to consider some options. First, if you are able, you might consider getting a consultation with Dr. Vincent Torres at the Mayo Clinic in Rochester, Minnesota. He is probably the world’s leading authority on PKD, including those who also have PLD.
Diane was at your stage of PLD 30 years ago. She was fortunate to see Dr. Torres who has worked with Dr. Nagorney, who has the most experience of any surgeon treating severe PLD. Diane had a partial hepatectomy, which relieved her symptoms. It was very effective treatment. Her life (and mine) changed dramatically after that brilliant surgery.
But, a starting point for you would be to contact Dr.Torres and see what he thinks.
Vicente E Torres MD
19 E Mayo Building
Division of Nephrology
200 First Street SW
Rochester MN 55902
(*his secretary was Brenda, but she may have retired )
Good luck to you,
Jim Smith (Diane’s husband)
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Hi all, and first I’d like to wish all you moms out there a lovely and healthy Mother’s Day. Yay Moms!