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.

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norma67 11/17/2014

Many of you might recall my nephew having a transplant st Vanderbilt hospital. He has been doing well until recently when cysts are breaking on the old kidneys and making him very I'll. the docs do not want him sick, so they are removing his kidneys. Wait until you hear this!!! They destroy the kidneys while they are in your body, using some method or another, then suck them out!!! A 2 inch incision and he will most likely go home the next day!! Anyone ever heard if this procefure before?? Wow! Is all I can say!! The last I heard about this surgery it was very serious and painful! Going home the next day??

norma67 12/02/2014

Heather, that is horrible!! That they forget you,! My gosh, Danny my nephew couldn't be forgotten if he tried. Do you remember when he was so sick after his transplant, tried to get out of his apt., ??? They insisted that he come, no matter how and he did!. He almost died from a normal, every day virus that we all get! It's a dam good thing he went when he did!!! You need a new transplant center! For sure!!! I am not kidding you either!! Love you, Norma ...

norma67 12/04/2014

Ok Heather, this is the deal, totally changed. He is scheduled for surgery the 3rd of jan. It was the only open slot this particular surgeon had and, he is not having it done the way I said previously. This is going to be dangerous. They will remove both kidneys as they are growing faster than lightening and making his life fairly miserable. That was not the point of having a transplant was it? He is a nuclear engineer and cannot work anymore as he has suddenly developed severe arthritis? He has a yoga instructor coming to his house to try and get him moving again. I have no clue how this happened but it has. The surgeon said he will remove one kidney and if everything goes good with that, then he will remove the second kidney, this is not being done laparoscopically. After looking at CT scans, etc., he has decided that he is not a candidate for that type of surgery. I am really worried! So there you have it, all I know for now. Love, Norma ...

CHeatherS 12/04/2014

Wow.... that is quite a turn of events... and I would imagine he is quite worried about it. My goodness! I wonder if some of the drugs he is having to take has an affect on how fast his kidneys are growing. My gosh, I am so sorry. It is just so hard to try and figure all of this out. And each one of us are so unique in our makeup, so we react different to the different drugs, and all. Everytime I think I have discovered some new helpful idea... I find out more that I DON'T know.

Here is something that I was just looking at that a friend is doing for painful arthritis in her feet and joints. It is called prolotherapy, and it is kind of like the opposite of cortisol shots. http://www.prolotherapy.com It sounds like a good thing to try, because it does NOT have side effects, and shouldn't be working against the drugs we have to take...

Please do keep us up on how he is doing... he sure will be on my mind and prayers.

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