Polycystic Kidney Disease (PKD) Support Group

hi Kristin and welcome.
there are a few things you need to know. first, PKD is NOT a death sentence. second, PKD is different in everybody, even members of the same family. third, people with PKD live normal, healthy lives in most cases.
some people do enter ESRD earlier than others, some live long and never reach that stage, dying from other causes. often lifestyle has a lot to do with kidney health. the better you treat your whole body, the better you treat your kidneys.
Tolvaptan shows lots of promise but no real results as yet. it may be that soon it will be offered as a treatment to slow, stop or even shrink cysts, thereby preserving healthy kidney tissue.
I once met a man who had been on dialysis for 25 years, I don't know what the record is. the same goes for transplants. I believe there are people with transplants over 30 years, some people have had more than one with dialysis in between. generally people with PKD do very well with transplants.
there really are no hard and fast answers to your questions because PKD has so many variations.
one of the worst things is something you mentioned, the fear of passing the disease on to your children. leave it at that, don't fret or obsess over it unless there is good reason to do so. the best thing is to take the best possible care of them, keep their diets healthy, make sure they get plenty of exercise and fresh air, let them live normal lives and don't coddle them.
we are here to answer any questions you have.

hey calm down and dont panic! every one is diff, so how pkd affects you might be diff from me. ive found stress plays a major part as stress has impact on bp which in turn plays big role in pkd.every one handles pain diff, some people only get pain with uti infections etc.if you have a possitive out look youll do ok,dont let thinkin about it ruin your life.most of us have a normal life, just need to slow down at times.keep ya chin up xx

Hi Kristin,

I have known about my PKD since I was 19 and I am now 45 and entering the final phases of ESRD. I have great belief that huge strides will be made in the next 10 to 20 years, so who knows what options will be available by the time you are my age! And your kids will have even more options should any of them have PKD.

I personally have almost no pain form PKD although my kidneys are huge. I am tired but other than that I feel fine. I am also the mom of a busy 2 and a half year old and I can still keep up with him (I know...I'm a really old mom!) I am not on dialysis yet and expect to have a live donor kidney soon. I am looking forward to feeling good after transplant.

I tell you all this just so you can see that PKD has many faces. I expect to see my grandchildren!

Take care of yourself and hug your kids and get educated but don't stress yourself out more than you have to!

Welcome!

Hello Kristin, I have had PKd in my family for two generations. I found out I had it when I was 17, now 48. Four years ago I had to have a bilateral nephrectomy due to the large size of my kidneys (61/2)lbs each. Immediately put on dialysis, I tried different types of dialysis finding out home hemo dialysis was best for me. My husband learned how to operate the machine and we did very well. There were only a few minor problems. I year ago I received the best news ever, I was a kidney transplant recipient. One thing I learned for other family members, I would refuse to go on predizone, or any other steroid. My mom and brother had way too many side effects. This disease is a disease that keeps on "giving, take one problem at a time, take care of yourself, and most important stay Positive! It really does help. Oh, and as for my transplant, I feel better than I have in 15 years!