Polycystic Kidney disease chat & community

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Hi everyone! I've been looking at all the postings for the past couple years and decided to finally join in!

I was diagnosed with PKD by accident when I had my appendix removed in 2002. A year later, I was stricken with severe pain and within a few months, I had a large cyst unroofed. A month after that the pain returned. One year after the first surgery, I had a renal denervation surgery to try and relieve the pain. Unfortunately, it didn't work. After discussing options with my doctors, I had my left kidney removed earlier this month. Living with all the pain medication is really taking a toll on my life. Depression, lack of appetite, etc - I was taking all my energy into going to work every day. I'm really hoping this last surgery will solve my pain problems. I've been real lucky to have the great doctors that I've had and I appreciate their toleration! I'm worried now that my other kidney will only last me about 10 years before it fails. I'm in my early 40s and can not wrap my head around not being able to work the rest of my life. I'm about to retire after 20 years of active duty service to the Air Force and am fortunate that I'll have disability and continued medical care. I've heard so many people talk about terrible medical care! Anyway, that's my story. I'm glad to have a place I can talk with other PKD members about the disease and any medical treatments available. Please feel free to e-mail me. I look forward to future discussions and chats!

I just retired in December 2005 after 20 years in the Air Force, having been diagnosed with PKD after only 3 years of service. While military medicine has much to be desired at times, it's was truly a lifesaver for me and the retirement benefits are incredible! I also found some incredible military doctors; like every medical program they have their good and their bad physicians.

I have some fabulous sugggestions for you to keep and maximize your military and VA benefits thanks to an excellent program in place here in the DC area. Please feel free to contact me about my experiences; I was where you were only a couple of years ago and and more than happy for your to learn from my experience and ease your transistion to civilian life. My email address is [email protected]. Just put PKD in the subject line so I don't send the email to the "junk mail" bin.

PS If you want to confirm I really am who I say I am, I think I'm still listed on the Air Force portal, although I haven't logged on in ages....

I am also a new member here. I am not sure if this will post and get on the board as my compter skills are pretty bad but I am trying to figure it out. My heart goes out to you and all the people who suffer with PKD. I have a daughter who is 18 years old with PKD. She is also trying to deal with severe pain in her right side and back. It has kept her out of everything she loves for some time now.She had a laproscopic marsupilation done eight months ago to stop two cysts from growing that were actually starting to tear the inside wall of her kidney. The doctors were really surprised this came on so quickly. This stopped the pain then. However now it is back. She started taking percocet and it really helped. It has not taken the pain away completly but it did take the edge off. Before these two episodes my daughter never had any problems and she was diagnosed before she was a year old. She is a happy young lady but the pain has taken a huge toll on her physically and mentally. My daughter always says " NEVER GIVE UP".

Important Announcement The MSN Groups service will close in February 2009. You can move your group to Multiply, MSN’s partner for online groups. Learn More
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