Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

It's time to move on

norma67
norma67
I know that I'am not all that knowledgable about all the aspects of PKD because I have type II PKD, but there are many people on here that know tons more than I do. We have to get back to the business of helping people with PKD and all the things it entails. People need our help, we need to continue networking and helping others. Lets get busy folks, we have no other choice. Let the brains begin brainstorming and everyone continue to ask for help. We have people from around the world that know all sorts of things that we don't know. We need to share that information, lets get going! Share what you do know as there are some that are just being diagnosed and are scared to death. We need to do what we can to help others. We are a force, networking is a force. Lets begin using it!

Lots of love,
Norma
deleted_user
deleted_user
I agree Norma. I think this web site is well named, it is my daily strength, and I feel all of you are my friends. Its a very good network and somewhere we can talk.

Clive
norma67
norma67
Thanks Clive, How are you doing? I see that your in stage 4, do you know what direction you are headed in? Dialysis or transplant or are you holding your own? Let us know so we can help guide you through all of this involves. How can we help you?

Love,
Norma...
deleted_user
deleted_user
I agree Norma. I check this site everyday to see what others are facing today. As for me I think I'm pretty blessed-in stage 4 w/ GFR 17, I have no pain, but I watch my salt intake. I just completed the Treatment Options Program and I get a call ever 2 months from a Kid-ney-Tel Nurse. Through the Treatment Program Options- when the time comes, I will do the PD at home-it was very educational.
norma67
norma67
What is the "Treatment Options Program" I'am not familiar with it at all, but apparently you are and are well informed because of it. Could you tell us a little more about it? We have people going through PD right now, Heather for one, I'am sure you are probably following her shenanagens with it all, LOL Maybe she will give us an update as to how she is doing? Good luck to you and I'll look for your explanation about the Program, we all need to be informed, don't we..

Love,
Norma..
tikasiamese
tikasiamese
Norma,
Thanks for reminding us as to whats important to the support group. I check in a lot to see what the latest and greatest news is. We all have to keep on track with that. Everyone here seems to be extremely knowledgeable (not like our friend Ruth, she's our star). This support group has made me more knowledgeable in the disease process. Remember, your mind plays a lot in your wellbeing. Thanks for always being there.

Love, Jen XXOO
deleted_user
deleted_user
Thank you for this post. I am very new to this site and don't check as often as I should, but when I do I am very grateful for it.
deleted_user
deleted_user
Norma and all that responded. I do not have PKD but am a member to help support my daughter who does.

I have emphysema, a progressives disease, and belong to other groups here and I find this group to be a "true" support group.

Unfortunately, that is not true of all groups.

I may not be able to offer a lot of advice or help but I am certainly receiving some from this forum.

Thank each of you for "paying it forward"

Ann
CoachRichie
CoachRichie
Hi, Norma!

You're absolutely right!

The resources (people!) in this group are fantastic!

What may be missing is the aspect of trust.
The internet makes it so easy to "hide" who we are.

This is not helpful.

Check out my website to see what I mean
www.innergameofpkd.com

I'm here to contribute and to assist where appropriate.

I suggest that everyone else in this community take a similar approach.

Norma, perhaps we con communicate using "messages."

Peace and Blessings!
CoachRichie