Saturday, January 9, 2010

Support system for CKDers

I have been depressed for the last few weeks. Questions about longevity, my bone pain and some personal problems have been bothering me. I have realized that how I feel has a lot to do with how I think. When I feel depressed, the bone pain seems worse. Yes, I know that has been said like, a gazillion times before but nevertheless, we all have our moments of realization.

This depression reflected in my posts here as well and I have posted some really, really depressing stuff for which I am sorry!

The main problem, when I think about it, is the lack of a support system. When I am feeling down, I have no one to talk to. Well, friends and family are there. But they don't really understand what I am going through. The only person who can understand what someone on dialysis is going through is someone else on dialysis. Period. Not even doctors, not parents, not spouse, not even dialysis techs and nurses. Heck, I feel PDers don't understand what HDers go through!

It would be really great if there was a support network of dialyzors in my city. Maybe all CKDers - folks with kidney disease. The Renal Support Network organizes patient support meetings every month in the US. Something on those lines would really be terrific. I understand it takes some effort organizing such an event. We could start in a small way. Just get a few folks together over coffee - well, the excess fluid may not be such a good idea, maybe a low sodium snack (are there any?), heck, maybe just some fruit, eeks - a loaded pistol for dialyzors! I give up!! But you get the picture. A simple meeting of people with kidney disease to share their problems and to talk to someone with similar problems.

I am willing to help. But I cannot do it alone. I will need the support of someone in this endeavor.


Saimanohar said...

A meet up for CKDers is a great idea.

Vikram said...

Kamal, NephroCare would love to sponsor such a meeting of CKDers.

We were thinking of a quarterly gathering of NephroCare patients - but we can modify that to monthly meetings open to all CKD patients in Hyderabad at the NephroCare facility itself. It could also be arranged elsewhere (e.g., ISB lawns through Sandeep's connections).

Let us talk more when we meet next. Vikram