welcome to the best support group on the internet.

just learning you have a disease that has the potential of causing you a lot of problems can be very scary. the good news is the cysts are very small and you want to do everything you can to keep them that way.

the healthier you are overall, the healthier your kidneys will be. eat a healthy diet, keep your blood pressure under control, don't smoke, if you drink do so in moderation, lots of water, exercise, low sodium (salt), keep your weight at a healthy level with less fat and sugar.

there are drugs in clinical testing, tolvaptan for one, that may stop or slow the growth of cysts. cyst overgrowth is the cause of kidney failure in people with PKD so if you can slow or stop the growth, that will go a long way in keeping you healthy.

there is some evidence that the reason tolvaptan helps is because it makes users thirsty and they drink a lot of water. until all this is proven, increase your fluid consumption, healthy fluids that is. avoid colas and go easy on caffeinated beverages. a cup of coffee is ok, lots of coffee is not. water is your best bet but other drinks, if not too sugary, can be helpful too.

ask all the questions you want, most of us have been exactly where you are and we have members at all stages of PKD who can help.

Being diagnosed with PKD doesn't necessarily mean your kidneys will fail. The majority do, but that majority is approximately 60% so you do have a 40% chance of not having PKD affect you to the point of renal failure. You don't mention what your function is?

 

My best advice to you is to:

 

Welcome!!! I can't add too much to what has already been posted by Spiderwoman and Katie, except to say, ask all the questions you want, never worry that your questions are silly, and allow us to offer our suppoort.

PKD affects each person differently. This board has brand new members on it, such as yourself, all the way to members who have gone through having a ransplant and have come out the other side healthy. Advances are being made in the study, and treatment of PKD all the time.

Fear upon first being diagnosed is to be expected. Once you have had time to digest your diagnosis, and you have learned more about the disease, it will become easier to accept, and we are all here to help you through the process. I can't speak for everyone here, but there are many of us, myself included that have had this disease for more than a decade, and all have lived productive, happy lives. I was diagnosed shortly after the birth of my son. He's a grown man now, and I'm enjoying my 2 grandbabies. As I said the fear is normal, but don't let it rule your life. You have PKD. It does not have you.

We are here for you,

Maggie