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  1. #1
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    How low can you go?

    Anyone out there living with a VERY low renal funtion? According to bloodwork, my remaining function is 7% (just..getting very close to 6%). I am scheduled to begin dialysis, but aside from a slightly fuzzy head at times, I feel fine. Yes, my energy level is down, but not terribly (did a 10k cross country ski yesterday no problem) My apettite is good, no leg twitches, chest pains, itchiness, etc. I realize dialysis is in the cards, but I'm feeling pretty good, and am hesitant. The doctors suggest to start now, before I get really sick. Any thoughts, anyone???

  2. #2
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    Dec 2011
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    Re: How low can you go?

    Hi, Jason.......I have the same GFR as you......a big ole 7 (sometimes it goes up to 8 & I do a happy dance!). Like you, I feel fine. My doctor says that they used to believe that the sooner you start dialysis, the better, but says they no longer think there's a benefit to starting before you need it. He says as long as I feel fine, there's no need to start. I've been stable at around the same GFR for almost seven & a half years & hope to continue for as long as I can. I can't tell you what to do, but I know this is the right choice for me. I am on the list for a transplant, but I'm listed for a "perfect match" because I don't want to do anything until I need to. When I start feeling bad, they'll change how I'm listed & because of how long I've been on the list, I shouldn't have to wait long. Is there a transplant in your future? If so, are you listed?

  3. #3
    Senior Member
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    Apr 2011
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    240

    Re: How low can you go?

    Hi Jason,

    I was at 9% and feeling fine. My team told me that as long as I continued to have no symptoms then there is no reason to go on dialysis too early as it is only a strain on your body. They said they've even seen people go as low as 4 ot 5% with still no symptoms.

    In my case they pushed me to try to find viable tranpslant donor among those I know before needing dialysis. It turned out hubby was a match so we did the surgery just this November.

    Originally I was at different nephrologist last January at 15% GFR who told me that I would be on dialysis soon and he sent me for fistula surgery saying he wouldnt put me on dialysis at that time but wanted me to be prepared. I cancelled the surgery and moved to different nephrologist and center. (above). And I am so glad I did. I would suggest that if you are feeling fine then try to go on list or find someone if able and do transplant. Research suggests that if you are able to transplant prior to dialysis, your outcome is better. IF your planning on transplant that is.. are you?
    Good for Nerak!! Being able to maintain that GFR so long! Awesome!

    Good Luck!
    LanaB
    TRANSPLANT SCHEDULED NOV 14, 2011 THANKS TO MY AMAZING HUSBAND!!!
    Today oct 11th.Still no dialysis -and at 9% GFR,
    think i'm gonna make it!!!

    Diagnosed 2005 CKD3.
    Benign Glomulersclerosis- not hereditary, no known cause
    Non-diabetic, normal BP
    Hospital error 2008 caused me to plummet straight to CKD5
    07/2011 -CKD 5 -GFR 11 - Not on Dialysis
    Awaiting transplant, doing eval, hoping for live donor match

  4. #4
    Junior Member
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    Dec 2011
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    23

    Re: How low can you go?

    Thanks, Lana! And congratulations on your transplant! How are you feeling?

  5. #5
    Senior Member
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    Dec 2010
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    460

    Re: How low can you go?

    Some people like Lana and Nerak can go a long time with a very low GFR and do okay. My boyfriend had to have emergency hemo when he was at 11 or 14%, I can't recall which. He was super sick though and had many of the bad symptoms that everyone is warned about.
    Boyfriend is the renal patient:

    Diabetes completely controlled with diet
    Hypertension better with the new med schedule.

    PD as of 7/25/2011


    Finally got the call on 12/20/2011 that he has been listed at Cedars Sinai.

  6. #6
    Senior Member
    Join Date
    Jul 2007
    Posts
    156

    Re: How low can you go?

    Quote Originally Posted by JasonEdwards38 View Post
    Anyone out there living with a VERY low renal funtion? According to bloodwork, my remaining function is 7% (just..getting very close to 6%). I am scheduled to begin dialysis, but aside from a slightly fuzzy head at times, I feel fine. Yes, my energy level is down, but not terribly (did a 10k cross country ski yesterday no problem) My apettite is good, no leg twitches, chest pains, itchiness, etc. I realize dialysis is in the cards, but I'm feeling pretty good, and am hesitant. The doctors suggest to start now, before I get really sick. Any thoughts, anyone???


    Been on HD sice Sept 2010 waas admitted to hospital over xmas sue to leg grat being blocked had no dialysis for a week. Docotr said I was stable all this time so now off dialysis UFN, have weekly blood tests to see how I am doing. Feeling fine in fact never felt better. Think my GFR is 6 tro 7 at the moment.
    Audrey
    Kidney problems starrted 1980's when I had Saracoidosis
    Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.

  7. #7
    Junior Member
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    Dec 2011
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    23

    Re: How low can you go?

    Quote Originally Posted by metrogirl View Post
    Some people like Lana and Nerak can go a long time with a very low GFR and do okay. My boyfriend had to have emergency hemo when he was at 11 or 14%, I can't recall which. He was super sick though and had many of the bad symptoms that everyone is warned about.
    I guess I'm a "freak of nature"...........which is a GOOD thing! My doctor calls me his enigma.......I say call me anything you like as long as I don't have to do dialysis!

  8. #8
    Junior Member
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    Dec 2011
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    23

    Re: How low can you go?

    Quote Originally Posted by granny View Post
    Been on HD sice Sept 2010 waas admitted to hospital over xmas sue to leg grat being blocked had no dialysis for a week. Docotr said I was stable all this time so now off dialysis UFN, have weekly blood tests to see how I am doing. Feeling fine in fact never felt better. Think my GFR is 6 tro 7 at the moment.

    That's GREAT!! I didn't know you could stop dialysis once you start & had a GFR that low........You're really lucky!!

  9. #9
    Senior Member
    Join Date
    Dec 2010
    Posts
    460

    Re: How low can you go?

    Quote Originally Posted by nerak View Post
    I guess I'm a "freak of nature"...........which is a GOOD thing! My doctor calls me his enigma.......I say call me anything you like as long as I don't have to do dialysis!
    I LOL'd at this.
    Boyfriend is the renal patient:

    Diabetes completely controlled with diet
    Hypertension better with the new med schedule.

    PD as of 7/25/2011


    Finally got the call on 12/20/2011 that he has been listed at Cedars Sinai.

  10. #10
    Junior Member
    Join Date
    Dec 2011
    Posts
    23

    Re: How low can you go?

    Quote Originally Posted by metrogirl View Post
    I LOL'd at this.



    (My reply was gonna be just the smile, but it needed to be at least 10 characters, so this oughta do it....................but just to be sure, blah blah blah blah blah blah, etc )

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