Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Dear friends,
Many of us suffer from polycystic liver disease, besides PKD. Personally, I was diagnosed massive polycystic liver disease, and I am worried about it, as well as I am worried for renal disease. At the moment my kidney and liver function is rather preserved. I know that there is not mach we can do, except taking care about life habits, avoiding salts, alcohol and caffeine, which can cause dehydratation, which is well documented to trigger cystogenesis in kidney. Taking care about BP and glucose levels in blood is also important, but nothing more than that.
I would like to share this article with those who have PLD. It is published in Journal of Hepatology in 2015. (I have the complete article in PDF, but I dont know how to attach it). At the moment there is one clinical trial in Netherland, about ursodeoxycholic acid (medication registrated for primary biliary cirrhosis).
Many, many, warm kisses for this wonderful community.
Shedoctor from Belgrade
http://www.journal-of-hepatology.eu/article/S0168-8278(15)00350-5/abstract
Many of us suffer from polycystic liver disease, besides PKD. Personally, I was diagnosed massive polycystic liver disease, and I am worried about it, as well as I am worried for renal disease. At the moment my kidney and liver function is rather preserved. I know that there is not mach we can do, except taking care about life habits, avoiding salts, alcohol and caffeine, which can cause dehydratation, which is well documented to trigger cystogenesis in kidney. Taking care about BP and glucose levels in blood is also important, but nothing more than that.
I would like to share this article with those who have PLD. It is published in Journal of Hepatology in 2015. (I have the complete article in PDF, but I dont know how to attach it). At the moment there is one clinical trial in Netherland, about ursodeoxycholic acid (medication registrated for primary biliary cirrhosis).
Many, many, warm kisses for this wonderful community.
Shedoctor from Belgrade
http://www.journal-of-hepatology.eu/article/S0168-8278(15)00350-5/abstract
Unfortunately the link that you have given doesn't seem to work, but I think I've found a summary of the article. Any treatment seems a long way off but at least some research is taking place. I also have a massive cystic liver. I'd like to hear more about how the PLD and PKD affect you and anything that you've found that helps in any way at all.
Chewitt
Thank you for your reply. Unfortunally, it is documented that ursodeoxycholic acid (just a natural compound of bile) inhibits cystogenesis in liver, only in PKD animals. It is really far from any potential use in humans. I hope that clinical studies would approve the hypothesis that ursodeoxycholic acid is at least the same efficient in patients, as it is in experimental animals. Btw, ursodeoxycholic acid is widely used in treatment of primary biliary cirrhosis and has minimal or no side effects.
I am 53, I have PD, both in kidneys and liver, but liver is much more affected with uncountable number of cysts. I am chronically depressed about it, frightened from what can happen. I am really happy because this precious community exists.
Lots of love,
Coping with PKD/PLD can be very difficult. That's one reason why this group is so good. What is your kidney function like?
I have an enormous liver and massive kidneys with about 32% function remaining. It's a heavy weight to haul around, causing me increasing pain and discomfort, but I try to keep positive. I've learnt the importance of pacing myself, and suffer if I don't do this. I try to make the most of the things which I can still enjoy and not dwell on those that I can no longer do. I don't really plan too far ahead now. I'll just wait and see what happens and deal with it as best as I can.
Keep in touch,
Chewitt
She has been on the liver transplant list for 18months now as it is the only solution to the problem for her. I know she struggles with the shear weight and size she looks 9 months pregnant
It does scare me that I will go down the same road as she has been so unwell because of this
Chewitt
Yesterday I started with UDCA (Ursofalk, DR.Falk Pharma, Gmbh, Germany) in a dose of 1gr/day. I was strongly encouraged by my hepatologist to switch on that medicine. I hope the best. I will send you all the news.
Best wishes,
Your Shedoctor