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.
Hello everybody, I recently registered with DS after I came upon it while googling PKD. Ive felt inclined to post comments a few times, but I felt I should introduce myself first. I was diagnosed with PKD at the age of 16 (Im 27 now). My mother had it, and her brother did as well. They both passed away four years ago from complications with the disease. Since my diagnosis, I havent paid much attention to my kidneys I was at the phase of youth where I felt I was invincible. However, a few weeks ago I decided to get it checked on. The ultrasound results were not what I expected, and I spent a few sleepless nights worrying about it. Its been about four weeks since that ultrasound, but since then I have resolved to live my life differently, and Im proud that Ive done things in the last month I wouldnt have had the courage to do say two months ago. I have found my silver lining.
I saw a neph for the first time last week, and I have a few more tests planned for this week, but at least my kidneys are fully functional.
Thats all folks I felt I had to introduce myself before I started posting comments!
I saw a neph for the first time last week, and I have a few more tests planned for this week, but at least my kidneys are fully functional.
Thats all folks I felt I had to introduce myself before I started posting comments!
great that you are changing your life for the better. I just want to tell you PKD is NOT a death sentence. there are drugs in human trials that may slow or stop cyst growth, the cause of kidney failure in PKD.
a healthy lifestyle is the best way to keep your kidneys in shape, avoid the bad things, smoking, drinking, recreational drugs, unhealthy diet (salt especially but go easy on fat and sugar too), drink lots of water, exercise - all the things everybody should do anyway, not just PKD people.
ask whatever questions you want, we have some smart people here who can give you good answers.
Welcome and congratulations for doing the right things (working with your doctors and taking care of yourself). As spiderwoman said, this disease is not a death sentence; it's just another challenge we face in life, but we can live a perfectly normal life span, albeit perhaps with some additional challenges. There are so many things we can do to keep ourselves healthy, physcially and mentally and you're well on your way to doing that for yourself. And rest assured, not everyone in a family follows the family pattern; we are each so very different and how this disease manifests itself in each individual, even in the same generation, can be dramatically different.
Keep up the great work and we're here to work with you!
Welcome!
I was diagnosed with pyelonephritis at age 16, PKD at age 22.
I am now 61, having had a transplant donated by my wife in jan. 1998. We're both well.
As you're finding out, doing what you and your medical team know to be best is the way to go.
The medical technology is improving, as there is ever reason to live your life in a productive, fulfiling way!
Peace and Blessings!
CoachRIchie