Hello Ray and welcome to the group. Glad you have been doing so well and great news that your daughter doesn't have any signs of the disease as of yet. We will all be praying that she never does develop it.

 

Just wanted to say welcome and that you have access to a lot of knowledge with this group! By the way, I have known that i have PKD for about 15 yrs and I also have high bp.

 

Melissa

hi Ray and welcome.

instead of being frightened to go to the doctor (face it, not going won't make the situation better) it might be time to become proactive. there are drugs in human trials that have the potential to slow or stop cyst growth so people may never have to face ESRD from PKD.

in addition there are things you can do to help yourself, controlling your blood pressure, a healthy diet low in salt, sugar and fat, exercise, lots of water (stay away from colas, easy on coffee, very easy on alcohol), don't smoke, no recreational drugs and, in fact, no medications unless approved by your nephrologist (I assume you have one), not even aspirin or other pain relievers, tho Tylenol is usually acceptable if needed.

good news about your daughter being cyst free. lets pray it stays that way.

hope we will hear a lot from you.

Welcome Ray to the community.  You will find great support here.  Like everyone else had said it is best to go to the doctor and keep your blood pressure under control.

I was dx at the age of 16 with PKD and then at the age of 42 went into renal failure and have been on dialysis since, which is 3 years.

So, get yourself to the doctor and then let us know how you are doing. 

 

Lori

Ray welcome to our support family!

So glad to hear that your daughter is cyst free at this time. I pray she stays that way.

I can relate to procrastination myself. This is a terrific bunch of people here so please come often and feel free to jump right into discussions ok.I look forward to talking with you in our chats one of these evenings.

 

Bridget*

Hi Ray, and welcome. You will be able to get all the support you need on this board and tons of useful info too. We are all at different stages of PKD here. Some just diagnosed and others like me who have known for a couple of decades ( I was diagnosed 26 yrs. ago). We are a group with people with no symptoms ,to people with many symptoms to people on dialysis, to people waiting for transplants to people post transplants.

Liz

Hi,

 

Thanks to everyone who has responded to my email. I will get myself to the doctor's next week.

 

The worst bit will be hanging around the hospital having tons of tests but I admit it would be silly not too. No, I don't have a nephrogist and have to confess I haven't heard of one before. However, I have not experienced symptoms until now so my doctor hasn't done much other than keep an eye on my blood pressure. I do take hypertention pills in fact a whole bucket load.

 

My wife has today put me on a diet. We spent lunchtime choosing stuff from a health food shop. I stopped smoking ten years ago, have never taken drugs but I do have a weakness for a glass or two of brandy.

 

Thanks again for all your support and I look forward to joining in some of the chat and forums.

 

Warm regards,

 

Ray