← Return to Liver cyst refilling: What questions should I ask?
DiscussionLiver cyst refilling: What questions should I ask?
Women's Health | Last Active: Jul 16 2:40pm | Replies (24)Comment receiving replies
Replies to "@amywood20, Is your polycystic kidney and liver disease under control after this sclerotherapy procedure? I have..."
@rosemarya the sclerotherapy can only be done in the liver, to my knowledge anyway, and I believe the max they will do at one time are three cysts (and they have to meet a size requirement and be in an appropriate spot). I believe the sclerotherapy is part of a research study at Mayo. I am lucky in that I don't have PKD/PLD as bad as some. It is genetic and nobody in my family has it, not even my twin. They think I have a mutation of it. But, my liver is large and I can't eat large meals without discomfort since the liver and kidneys take up more space than usual and they can crowd things. Hurts when my midsection is pushed on. Locally, I am supposed to see a kidney doc once a year to have blood work checked. The liver doc here doesn't have me come in annually though. Said there's not much he can do and to come back when it starts affecting my quality of life. I actually had two locally liver docs say this. Then I started going to Mayo, which I decided to do once I learned of the sclerotherapy. I've been there for an annual twice now. First time that treatment was done. This past year it was not, as the CT scan didn't show any cysts large enough, which I believe has to do with the study being done. Had I been in a lot of pain I have to wonder if they would have done it on a few cysts anyway. I have an innumerable amount of cysts in the liver and kidneys so there is no way to treat all of them. They could remove part of the liver but I'm not to that point where it's needed. There are medications in clinical trials right now to slow the progression of the disease. There is also one that is being used off-label. It's a monthly injection into each glute that has shown to slow down the growth and even shrink some cysts in the liver. The studies on it were for those with a more severe form of it compared to what I have. The medication can cost approx $10,000 a month and is not covered by insurance since it's not FDA approved for this use. I was able to qualify to get it for free but decided not to take it. Once you stop the injections, the cysts start growing again. There are trials going on right now for a pill version but according to my local kidney doc, I don't qualify for it since I'm not sick enough. The big picture with this disease is that 50% of those with PKD end up on dialysis or needing a kidney transplant by the age of 60.