Comments on: What Would A Polycystic Kidney Disease Patients’ Community Look Like?

By: CoachRichie

CoachRichie — Wed, 18 Nov 2009 23:37:01 +0000

Hi, Steve!

You are absolutely right!
We need to have a community that is more than merely on-line comments on a message board, however good those are.

Keep On Truckin’!
Coach Richie Perl

By: CoachRichie

CoachRichie — Wed, 18 Nov 2009 23:34:22 +0000

Hi, Karyn!
Seeing as you just joined the Renal Support Network page on Facebook, I’m sure you’re aware that they have somethiong called HopeLine, which is a telephone number which connects Kidney Patients to someone who has kidney disease and offers specific information and I suppose, uplifting support.

I don’t see why something like this can’t be done. There would have to be a bit of training, but I don’t believe too much. There could also be a “network” of folks who could be on an available “buddy list,” perhaps classified by age-range, gender, geographic location, etc. who might be available to be buddies. (once someone has a “buudy,” they would be temporarily off the list.

Anyway, I think you get a bit of my vision!

Peace and Blessings!
Coach Richie Perl

By: Steve jackson

Steve jackson — Wed, 18 Nov 2009 02:29:00 +0000

I feel there are people like myself when I started dialysis had questions to ask but needed answers from someone already doinig it.The same is true for when I started peritoneal dialysis.There are questions to be answered after you have had major surgery like miself when they took my kidneys out(like what it is like not to have to pee anymore and the questions people will ask you) sometimes the best person to answer is someone who has been there and done that and having to keep a positive attutide.
Thanks
Steve

By: Karyn

Karyn — Wed, 18 Nov 2009 01:22:01 +0000

Ten years ago I felt desperate and alone in this disease. Today, I can honestly say that because of the PKD Foundation and the internet I have found both a comfortable niche as well as my PKD voice. From the very first phone call connecting me to others with PKD in my area my life truly began to change for the better. I can’t even say that it was the ‘misery loves company’ thing, as much as my curiosity about PKD that sent me on my quest to find an identity and connection with others in the same boat……I have zero family history of PKD so my desire to learn about this disease and its affects have motivated me to branch out rather than hide. I personally would rather have a crystal ball into my future than be mowed over by unpleasant surprises.

When I attended my first PKD convention I met many, many amazing families, patients, care givers, doctors, researchers, and staffers who all ‘got it.’ I think that surrounding yourself with people who understand your feelings, emotions is very important. I feel sorry for people who chose to hide and not connect with others or face their fears….I see nothing good that can come out of that situation. However, PKD seems to be one of those diseases that lends itself to staying ‘in the closet.’

I would have to agree with you, Richie, when you suggest the possibility of finding a more intimate place for PKD patients to congregate and connect as something worth exploring. Not everyone has a PKD chapter or ‘buddy’ to talk to….not everyone wants to deal with computers….hearing a voice and engaging in real time conversations might be helpful.

Getting such a program up and running could be challenging….perhaps it’s something that can be suggested to the PKDF Volunteer or Education Departments? It would take some coordinating and some expense to execute. The one thing I do know is that for something like this to be successful it would need to be ‘free’ to the pubic.