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
Hello All,I'm hoping to find out if anyone has experience with the various drugs used to stimulate egg production in IVF/PGD.I was diagnosed with PKD at 19 when I noticed unexplained high blood pressure, and have a very positive (almost 100%) family history. After previous experience watching family go through kidney failure and transplant, I have decided that I will definitely not be passing on...
Hi I'm 42 years old and have pkd. I got diagnosed 3 years ago and recently my GFR fluctuates between 13-20%. Does anyone else have this problem?? It dropped and they had me get a fistula placed for dialysis. Now it's back to 19% and my Dr is questioning my symptoms. I am exhausted and have vomiting/nausea. Some days seems a little better than others. I really have no energy for nothing. Now I'm...
hi, I am 16 and was diagnosed with PKD 3 years ago. I've always had mixed feelings about my diagnosis. On the one hand, i have seen what several of my family members have had to go through with dialysis and transplants. However it doesn't feel real because I have no symptoms. I had an ultrasound recently, and seeing the cysts on screen was hard to experience. I joined this group because I wanted...