hi there, i have a 4 yr old daughter who has pkd she has high blood pressure doctor told me to feed her steamed vegies, fish, chicken etc and no salt at all or sugar.. my family or her fathers fami;y have no history of kd was just unotunate she was diagnosed with it before birth

LRob,
Your neph ought to be the go to person to manage your condition and make recommendations on diet, exercise, etc. My bp went up into the hypertensive range and my GP told me to stop using table salt. There are plenty of web sites on the topic and associations of PKD that offer information, support, and menu planning. In summary, take it slow, get plenty of rest, drink plenty of water, and as your GP and neph a lot of questions. I was diagnosed 31 years ago and it appears the marker I got is for a minor manifestation.

Hi LRob, I was diagnosed with PKD back in October and now I am down to 43%. So sorry about your family. My family seems to be in kinda denial and would like to get them tested. Seems like no one wants to talk about it. Its like the rotten apple in the carton. I understand what you mean about what your suppose to be doing. The 1st thing is if you drink diet pop or any pop, please stop. Its got phosporus in it and its not good for kidneys like ours. i stopped but it took me about 6 months to totally get it out of my diet. I also, very rarely eat fast food. Eat good at home, fish, chicken, pork with a side veg. I have been practicing it. Unfortunately, there is nothing we can do with this disease process.(I recently found that my PKD has spread to my spine). Have you gotten on the PKD support group. I know, most of them are much far worse than we are but I look at it as an eductional thing. I befriended some excellent PKD people along the way and you can get some good tips from them. I have them to lean on when I feel down and out (I have been getting that alot lately - especially since I have been to so many tests and drs).

hi there rob - so sorry I've been on dyalisis 4 yr now - diagnoised 10 yrs back - when kidneys where at 50% no family - that's hard - but like tikas said family members turn into ostrichs - head in the sand thing (so wont hve to see or deal with this) making u feel alone - cruz around and read all the good sites u will learn alot anf we will be your family

Hi LRob, i've been living with PKD for about 10 years (I am 31 years old). I keep my blood pressure controlled with meds, exercise often, and try to eat healthy. More importantly, I think, is to stay positive! If you don't mind, it doesn't matter. Although I do unfortunately have PKD, there are lots of wonderful things about my body that I do love! :-) Get yourself educated on the disease, then manage it, then move on with your wonderful life!

I too am unprepared and understand how ur feeling. Somehow I felt I would get help and bounce back to what I once was. I had to stop seeking medical care since I am w/o insurance and was denied disability/medicare. Just waiting the appeal now. The more I read abt PKD so many thing come together like a puzzle. I would love to have some friends to talk to, it can be pretty lonely.

Hi Rob I too am new to this diagnosed after a stint in hospital and picked up on a CT scan and am going through the process of having 2 complex cysts investigated and really scared on what that means.
If you have an iphone there is a fantastic app from itunes from the ibooks called PKD DIET which will give you some ideas of what you can eat and what to avoid.
It is really good have a look.

I was diagnosed 4 months ago after giving birth to my son. If it weren't for the postpartum preeclampsia I'd probably have never know I had PKD. WhIle checking my liver and gallbladder through ultrasound is how they discovered I had cysts on my kidneys. They acted as though it was no big deal, told me to fool up with my doctor. Even my doctor seemed hesitant at times to go into depth about this Condition. Of course lie everyone else I went to Google for answers and I was angry, confused, depressed. I have 4 babies I have to live for and I've felt completely dismissed. I've been in pain and I have felt aloe, no one on either side of my family has had PKD, so no family history to go on. I don't even know what percentage I h available for kidney function?.I have so many questions myself. I really hate to feel so left in the dark, so this next doctors visit is going to be intense because I will not leave without te answers I need or referrals I need. As far as diet I was told to watch what I eat, no soda, no iced tea, low sodium or none, and drink plenty of water. It's taking some adjustment but I'm trying.

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