PKD Also?

[hac82]

Hi I'm new here. Is this also for people with PKD? Polysistic kidney disease? I'm 35 and have PKD it's hereditary from my dad and grandad. Anyone else have this?

[cmaxwell78 NKF Ambassador]

Yep! I inherited PKD from my father, also. My brother and sister also have it. In the health community, CKD (or Chronic Kidney Disease) is just the umbrella under which many kidney issues fall under.

[hac82 in reply to cmaxwell78]

Ok thanks very much.

[Patient-Empowerment NKF Peer Mentor NKF Ambassador]

Of course! I'm a PKD'er too and, like you, inherited it from my father. You have a whole community of kidey patients on this site. How can we help you feel more connected to this platform? Please reach out again and often.

[Frankie24]

Hi, just saw your post, living with PKD, stage 4, GFR 21, also inherited from a long line on my Dad's side including him. I am the only one since my dad to be diagnosed with PKD, none of my siblings has it fortunately. I hoped that someone would come forward and offer to be a living donor in my family, but no one has which is fine. I just take one day at a time and I am doing fine. I went through a very long period of denial of the PKD, over 20 years, then as I began experience symptoms and having health issues I went through a struggle admitting to myself that it was real, I was angry, sad, depressed. Now I just live each day and I don't worry about the future. I do my best to take care of myself. I still work, exercise, watch my weight and my diet and see my nephrologist on a regular basis.

[hac82 in reply to Frankie24]

So far I'm the only one of my siblings too. But not all of them have been tested cos they don't want to. I'm only since my dad diagnosed too. I have 3 boys so they Might have it also but they are too young to worry about that at the moment. What health issues have you had with it. I forget about it a lot most the time as it doesn't affect my daily life yet. I sometime have pain but haven't had urine infection for a long time. I'm not great with my diet, I see consultant yearly for check up.

[Frankie24 in reply to hac82]

My son is almost 25 he already has high blood pressure but I will not have him tested due to concerns for being able to be insured etc. I have taken him to forums on living healthy with PKD so he understands my illness and also realizes that it is important for him to take good care of himself, God forbid, just in case. As far as your diet, you just do the best you can. None of this is easy. I became very anemic, starting having terrible pain, my blood pressure became unmanagable, I get dizzy, light headed, and feel like I am going to pass out with very little exertion and short of breath. I also have nuisance type things, terrible itching, I get blood in my urine if I lift anything heavy and terrible pain, because usually I have ruptured a cyst. My potassium gets to high and then I have to be treated in the hospital, just things such as this. Honestly though after what I saw my Dad go through I don't feel like I am that bad off.

[jobeth]

I also have PKD. Five of my mom's 10 children have it. The rest have not been tested. My dad had it and his mother had it. Some of my cousins and nieces and nephews have it. I am at stage 5 with GFR of 11 - 13. I did not start watching my diet much until it was down around 20 to 30, and then I only kind of watched it. Now I try, but am not real successful. From what I have read recently, if you start getting real strict with your diet when you are in stage 3, you may never progress to stage 4 or 5, or it will take longer. I am trying to keep mine where it is as long as I can. The one thing I do best is avoiding meat. I do have some, but it isn't often, and it is limited in the amounts. I use almond or rice milk, and avoid using cheese. I don't drink sodas so I hope I can work on improving what I am doing to maintain my health.

[Betsysue2002 in reply to jobeth]

You dont know this but all of you are an encouragement to people with stage 3 and present a definite reason that doctors need to say something to their stage 3 patients and not wait.

My doc never did and i could have been a liitle more particular with my diet years ago.

There could be a lot more of us in better condition longer if the doc had said something sooner.

[jobeth]

My doctor did tell me to limit my dark sodas, but I don't think he was serious enough about it to make me realize that it would make a great difference. I have been following the chapters of a book by Lee Hull. He will be publishing soon, and is sending out chapters as he finishes them. He says that if people will start by stage three to limit their diet and do everything right, they can avoid ever having serious problems. By the time we wait till stage 5, it may be too late, and we can just do the best we can to go as long as we can.