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.
Hi, I'm new to Daily Strength and have a few questions. Back in 2008 I had a stroke which affected my kidneys. The doctors told me I had a few cysts in my kidneys but it was nothing to worry about.
Well turns out they were wrong! About 2 years ago I was hopitalized with eschemic colitis and then found out I have PKD.They told me my kidneys were huge. I also found out that i have fibromyalgia and from what im reading on this site PKD can cause alot of pain which im now slowly learning about. It drives me nuts that i cant find a reasonable treatment option in my home so i have started to look elsewhere for treatment options. Ive learned alot about the advances in Stem cell therapy and think that this is by best option to try to regrow cilia.
I realize that some of the treatments are experimental but the results i read from Dr Winai Sawasdivorn and the results i read online pubmed http://www.ncbi.nlm.nih.gov/pubmed/14529346 and a treatment center have looked really promising http://stemcellthailand.org/services-list/polycystic-kidney-disease-treatment/
Im really curious if any member here has gone through the treatment. Have you seen improvement?
Im starting to feel alot of strange pains on my upper left side, near the rib cage and also near my back. This is driving me nuts because im usually fit as a whistle but now after sitting for any length of time I have alot of pain . Any help form members would be greatly appreciated.
Well turns out they were wrong! About 2 years ago I was hopitalized with eschemic colitis and then found out I have PKD.They told me my kidneys were huge. I also found out that i have fibromyalgia and from what im reading on this site PKD can cause alot of pain which im now slowly learning about. It drives me nuts that i cant find a reasonable treatment option in my home so i have started to look elsewhere for treatment options. Ive learned alot about the advances in Stem cell therapy and think that this is by best option to try to regrow cilia.
I realize that some of the treatments are experimental but the results i read from Dr Winai Sawasdivorn and the results i read online pubmed http://www.ncbi.nlm.nih.gov/pubmed/14529346 and a treatment center have looked really promising http://stemcellthailand.org/services-list/polycystic-kidney-disease-treatment/
Im really curious if any member here has gone through the treatment. Have you seen improvement?
Im starting to feel alot of strange pains on my upper left side, near the rib cage and also near my back. This is driving me nuts because im usually fit as a whistle but now after sitting for any length of time I have alot of pain . Any help form members would be greatly appreciated.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
The problem you might encounter is the word, "experimental" with your insurance company. Our country has changed. I am finding that what gets "covered" also has different meaning as well. I am finding that our choices often are now limited and often dictated by others.
I wish you well. I hope you will get the treatment that you would like for your health. Keep us posted.
Losburit,
Beware of these unproven, dangerous and very expensive treatments in China and Thailand.
In U.S. We have clinical trials for safety and affective ness. I can't take Tolvaptan because it would give me diabetes and affect my polycystic liver so says my nephrologist. They did a clinical trial in Japan on water loading for PKD and it does more harm than good. I stop trying to drink 4 liters of water now and have been drinking 2-3.
Discuss everything with your nephrologist. Have you discussed it with yours?
We want to be educated consumers.