Need info on Chronic Kidney Disease please

Avatar for coellis
iVillage Member
Registered: 03-26-2003
Need info on Chronic Kidney Disease please
5
Wed, 08-29-2012 - 5:44pm

I am in stage 4 of chronic kidney disease.  Couldn't find a board that addresses just kidney illness.  Stage 5 is the last stop, I'll either need dialysis or a new kidney.  What I'm searching for is inside info on the whole dialysis process.  I've read everything about the medical point of view, but I want those who are doing this to tell me the honest facts of what it's like on their side.  ie; I am not convinced that dialysis is the right method to choose.  I just turned 67, am female, also have diabetes but it's under control, and I live alone.  Can anyone shine a spotlight my way?  I want the truth.  Thanks.

 

Community Leader
Registered: 07-25-2000
Thu, 08-30-2012 - 1:22pm
Hi and welcome. I am sure the decisions you have to make are not easy ones. Is your disease progressing rapidly, or has it been a slow process up to now?

I do not have any close experience with dialysis, but I have put out a call to other CLs to see if there is someone who could offer their views.

If no one here can help, perhaps there is a support group in your area? http://www.aakp.org/outreach/List/ If there is not one listed there for your area you might want to ask your doctor or hospital if there is one that they know of.

Hugs to you! Please keep in touch.
Avatar for coellis
iVillage Member
Registered: 03-26-2003
Fri, 08-31-2012 - 12:42am

Thanks so much for responding nhgal!  I have many questions.  Was it a daily thing for you or more like 3 days per wk? It looks like you only had to do it for 6 mos., and you were 47 by the time of transplant.  I've been reading other forums that say things like, my aunt was on D for 30 yrs. before she died. The hours varied but most people say 3 or 4 hrs on the machine.  If I am 67 now, I really don't want to spend my senior yrs. like that.  Did you get sick?  Yes, I drive but do they not want you to?  I've also heard that D gives you dragon breath, was that problem for you? And did you have a "metallic" taste in your mouth?

I am on a retirement pension, have Blue-Cross Blue Shield basic ins. and I also have Medicare but only part A.  Are you saying that I will automatically get Medicare part B?  The financial part of all this is astronomical!  My pension and small SS check I get just barely gets me by month to month.  It really bothers me that all the $$ I have will be going straight to the medical field and nothing going to my family as I had planned in my will.  I took out life ins. many yrs. ago so that my heirs wouldn't be left high and dry, but now it looks like they will get nothing but my debt. 

Sorry about so many questions, but I would dearly appreciate answers.  This is all so new to me.

 

Avatar for coellis
iVillage Member
Registered: 03-26-2003
Fri, 08-31-2012 - 12:48am

Thank you Notoo.  I went thru stage 1, 2, & 3 w/out even knowing that I had it.  So I cannot tell if it progressed quickly.  But my Dr. says I can be in stage 4 for a long time if I take care of myself. Which I am.  I'd appreciate any & all info you can send my way!