I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: brmoore on May 20, 2010, 12:37:01 PM

Title: How long have you been Stage 4 ???
Post by: brmoore on May 20, 2010, 12:37:01 PM
         How long have you been at Stage 4 waiting for the start of Dialysis  ?? In my case I have been
at Stage 4 for for 5 years (GFR between 15 and 17).    :pray; :pray;
Title: Re: How long have you been Stage 4 ???
Post by: Sunny on May 20, 2010, 02:19:26 PM
I have been in stage 4 (pre-dialysis), for 9 years.
The lower my GFR becomes, the harder it gets. I am currently at 14 GFR.
Title: Re: How long have you been Stage 4 ???
Post by: KICKSTART on May 20, 2010, 02:40:53 PM
Mine was 5 years ..but that was soooooo long ago !
Title: Re: How long have you been Stage 4 ???
Post by: BASSMAN on May 20, 2010, 06:58:15 PM
Stage IV for a little over 2 years.  Currently fluctuating between 18 and 20 GFR.  Hope to transplant in July or August and skip dialysis.
Title: Re: How long have you been Stage 4 ???
Post by: tyefly on May 20, 2010, 07:10:16 PM
I was in stage 4 for only a few months......   I had good lab numbers and then in a few months  I was dont to nothing and started D......  went too fast........
Title: Re: How long have you been Stage 4 ???
Post by: RightSide on May 20, 2010, 08:31:41 PM
My GFR is still about 16 and my pre-dialysis creatinine is still about 4.0.  It's been that way for nearly two years.

But by September 2008, I was feeling so rotten--dizzy, nauseated, fatigue, bone pains, terrible itching--that I decided to start hemodialysis anyway.  And I'm glad I did.  I feel much, much better now.  The dizziness and nausea are gone, and my uremia is under good control.

So I don't think you should obsess about the GFR and creatinine numbers.  If you feel lousy, ask your neph if you might benefit by starting dialysis anyway.  If you're like me, you might not lose that residual kidney function for years--and all the while, you're going to be suffering from uremia until you make the decision to begin dialysis.
Title: Re: How long have you been Stage 4 ???
Post by: tyefly on May 20, 2010, 09:23:10 PM
competely agree........ I feel     Way  better now that I am on D.......... I forgot how sick I was........  I have skipped a couple of times and quiclkly remember that feeling.....dont like      Hate Dialysis  but   it sure makes me feel better......... 
Title: Re: How long have you been Stage 4 ???
Post by: Jean on May 21, 2010, 12:29:51 AM
Stage 4 for about 18 months that I know about. GFR was 24 at my last vist to neph, three months ago. Have an appointment next week. I sure do wish they would just e-mail me my labs ahead of time. The waiting just kills me.
Title: Re: How long have you been Stage 4 ???
Post by: texasstyle on May 21, 2010, 05:54:43 AM
My husband was stage 4 when we first found out he had renal disease. He neglected to seek medical attn. prior to that. Oh yes, he was very sick for a very long time until he went to the Dr. don't get me wrong. GFR was 25-30% when he first went. With in a year he started dialysis. They tried to help control the blood pressure so maybe he wouldn't decline so rapidly but he did. I guess everyone's different but the most important thing is to take good care of your health not matter "what" your health ay be at the time.
Title: Re: How long have you been Stage 4 ???
Post by: tito on May 22, 2010, 11:30:46 AM
I had heart surgery about ten years ago. The doctor came out of the OR and told my wife my kidney function had dropped. It never came back. My pcp "handled" it - and he is a well known internist who was with Beth Israel and now Brigham in Boston. I trusted him to handle it. He monitored my blood pressure, changing medication when necessary. He also monitored my creatinine, which stayed at about 3.0. Every time I saw him, my results letter simply said that kidney function was stable.

Well about 3 years ago, I started having symptoms. First, I came down with Legionnaire's Disease. He never said that this can be connected with renal failure. I had what he thought was a bad reaction to niacin - itchiness and nausea (renal failure). My nose was bleeding like crazy - he said it was dry air. I had a bleeding ulcer and severe anemia. He gave me a few iron pills. To top it all off, when my creatinine started increasing, I asked him if it could be from Nexium. He said it would be wise not to take the Nexium. I landed in the hospital having almost bled to death from the ulcer, and was in ICU for 3 weeks.

My pcp never, in the ten years I had stage 4, advised me to see a nephrologist, nor did he counsel me to get ready for ESRD by researching dialysis and transplant. I trusted him to say or do what was necessary - it was misplaced trust and I would never do that again. He finally advised me to see a nephrologist after my creatinine increased. He said he would find one for me - then he promptly went on vacation and forgot about it. My wife actually found my nephrologist, and she found a good one.

Well, my pcp was "Best of Boston" for several years, and was even featured on Frontline on PBS (look it up - "Dr. Solomon's Dilemma"). Now I only trust him with my flu shot.

So, the short answer is that I was in stage 4 for about 10 years before my nephrologist (Dr. Hentschel at Brigham - a fantastic doctor) got me ready for dialysis. I feel much better and am doing well on PD. I'm on the transplant list at Brigham and getting on the list at Columbia-Presbyterian.

Title: Re: How long have you been Stage 4 ???
Post by: RightSide on May 22, 2010, 07:12:56 PM
My pcp never, in the ten years I had stage 4, advised me to see a nephrologist, nor did he counsel me to get ready for ESRD by researching dialysis and transplant....Well, my pcp was "Best of Boston" for several years, and was even featured on Frontline on PBS (look it up - "Dr. Solomon's Dilemma"). Now I only trust him with my flu shot.
Unbelievable.  Have you talked with an attorney about the possibility of a malpractice lawsuit?

All I had for primary care was a Nurse Practitioner.   
I started having bone pains and I thought it was arthritis, because that runs in my family.  So I went to see her.  She said that it sounded like arthritis--but "Just to be on the safe side, I'm going to do a complete blood workup on you."  She included tests for renal failure and bone marrow disease, as I was about to find out later.

I waited, and then came the results.

"Rightside, we have to refer you to a nephrologist right away."

"Why?  It's just arthritis, isn't it?"

"No.  It looks like kidney disease...."

I got my first visit to a nephrologist within two weeks after that.  The diagnosis:  CKD stage 4.  After that, he treated me until I could find a nephrologist closer to where I live, and he treated me for my CKD.

Not bad for a Nurse Practitioner.