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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Family of PKD patients

Hello all, I am new to this support group but my family has been dealing with PKD (polycystic Kidney disease) for generations.  Mother, aunts, sister, bothers and even my children were diagonised already.  We are thankful for all the research and clinical trails that the medical community has been working on.  We have seen how this disease is similar and different at times for us all.  At this time we are all at different levels of kidney function and pain levels.  Our family functions are sometimes more of a PKD forum on updates.  For myself,   I knew at 16 years old I had the disease and I lived a full life. Now 40 years later my kidney function has been under 15% for many years but then the overwhemling fatigue took its toll and I went on dialysis only recently. Hopeful for a transplant soon.


My advice to anyone - Be as healthy as you can be.  Find the best nephrologist you can find that is familiar with PKD.  Maintain a good blood pressure. ( Note: high Blood pressue  & multiple pregnacies for women may cause faster cyst growth) Avoid heavy lifting or strain to kidneys. 


Good luck to all

Replies

Chewitt
Chewitt

Thanks ToughGirl. It's always good to hear of people who have dealt well with this disease. I hope that you have news regarding the transplant soon.
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