Barbara R - ADPLD
ADPLD, no kidney cysts. I am using dietary changes and proton pump inhibitors.
I do not have Polycystic Kidney Disease. I have only Polycystic Liver Disease. I feel like I am one of the lucky ones because my symptoms seem to be much milder than others. I don't have a lot of the health issues, and by making some dietary changes, along with some antacids, this has helped me feel better enough, for now, to not have any surgery.
I am 47. I found out that I had PLD 10 years ten years ago, when I was pregnant with my 3rd child. I was having a sonogram to check the baby's size, and the radiologist got a very puzzled look on her face. My gastro doctor gave me a small amount of information about PLD, and basically told me that there was nothing I could do about the disease. He kept me on Protonix for my acid reflux, told me to stay away from activities like kick boxing, and to get yearly sonograms to watch the progression.
My liver cyst size didn't really start affecting me until 2-3 years ago, which is when I sought out a doctor with some knowledge about this disease, and found this support group, Dr. Torres, and started seeing Dr. Terry Watnick at John's Hopkins in Baltimore (I live in Maryland).
Probably not related, I had my thyroid removed 2 years ago because it had some tumors growing on it, one of them quite large. The tumors were benign, so no further treatment was needed.
My stomach never got flat again after my third child and I have never gotten my weight back to pre-children status. I have suffered from reflux for many years, even before I had children, and have been taking Protonix off and on for years. I think that it is quite possible that so many years of taking this acid reducer-proton pump inhibitor, has helped to keep my cysts and liver from growing as quickly as other people's. I basically have 3 or 4 large (small to med fist size 8 cm) cysts, as well as the hundreds of smaller ones. The one pressing on my stomach is the one that causes me the most problems. Some changes I have made that I think have helped me feel better, and since they don't feel my liver is any bigger than a year ago, possibly the following changes have kept my liver cyst growth to a minimum.
Over a year ago, I started taking Zegerid another acid blocker, with sodium bicarbonate in it as well. I cut out caffeine, and most alcohol. I cut out gluten and soy products and started using more whole grains, and cut back on my animal protein a little. Some of the differences I have seen from a year ago; I have lost a little weight (only 6-8 lbs, but good because I am not one of the skinny people. I am still 40 pounds heavier than when I got married.) I am not burping/belching all day long anymore (I still do some after i eat) I am not having "stomach aches" and I don't have the burning reflux anymore.
More recently, I have been experimenting with foods lately to see if the gluten makes a difference. I have come to the personal conclusion that the soy lecithin, soy flour, soy protein, etc that is in most breads is what makes a difference in how I feel, not the gluten. Another change I made a year ago, was I have started taking Benefiber. I add it to oatmeal, hot drink, cold drink, etc. usually 2 times a day. For me, it helps to keep things running smoothly.
I am participating in the study at the Mayo to determine the genes that cause PLD. Dr. Torres informed me that the location of the gene in me is different than what most people with this disease have. So far, we don't know of anyone in my family before me that has had this disease. So, I could be one of the few "spontaneous" cases. Whether that makes my PLD different from others, I don't know.
For now, I am not going to have any surgery. I am turning 48 and figure that with menopause around the corner, and a medication down the road that could reduce my liver size, maybe I will be lucky enough to not have to undergo the surgery. If my liver continues to grow and I do need it, I will have it in a few years when my kids are older and more independent, and I don't have hormones that make it increase again.
