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
My husband is 75 and was diagnosed with a massive cyst on his kidney 15 cms 3 years ago This has increasingly become painful and his specialist agreed to do something about it First suggestion was to drain it but noone was prepared to do it as it was too big so therefore dangerous Next option removal of cyst plus kidney After numerous attempts to find out what is happening with no reply he...
Hello everyone. At the Docs office for broken rib and they told me I had PKD & PLD. I asked what that was because I've never heard of it. Prior to that I was at the hospital for what I thought was appendicitis, which embarrassingly turned out to be constipation:/. At checkout the nurse told me they found 2 tiny cysts on my liver. He asked me if I drank a lot and I said yes because... I do. Or at...