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
Hi everyone, I Am brand new to this. I was diagnosed with PKD in June of 2007, I will make this short the best I can as a lot has happened. I was very lucky to land the best of the best doctors at UCI Medical Center in California. Over the years I had over 400 cystic tumors removed which also had spread to my liver and uterus. After several operations unfortunately I had to have a hysterectomy...
Hi Everyone,I am new to this.....I’m 40 years old and was diagnosed a few years ago with PKD. My kidney function is good, many cysts in kidneys and liver and have high blood pressure.I am wondering about the pain we experience with PKD? I have been have been having abdominal pain for years and recently have been experiencing lower back, hip, flank and groin pain. I was recently in the ER with...