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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
    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?

    Comment


    • #3
      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

      Comment


      • #4
        Re: How low can you go?

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

        Comment


        • #5
          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.

          Comment


          • #6
            Re: How low can you go?

            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.

            Comment


            • #7
              Re: How low can you go?

              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!

              Comment


              • #8
                Re: How low can you go?

                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!!

                Comment


                • #9
                  Re: How low can you go?

                  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.

                  Comment


                  • #10
                    Re: How low can you go?

                    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 )

                    Comment


                    • #11
                      Re: How low can you go?

                      I was stable around 8-9% for two years, and then it started to drop fairly quickly. My nephrologist strongly suggested starting dialysis, as it's 6% and dropping. Aside from a fuzzy head and weak muscles, I don't feel that bad, but nor do I want to. So it would appear it's time for 'let the good times flow". Besides, I can't even get on a transplant list if I'm not on dialysis here in Ontario. No jumping queue..you have to 'do the time' first. (If you have a doner, it's another matter altogether) Maybe I'll just scrape together that $60,000 and get one in China!

                      Comment


                      • #12
                        Re: How low can you go?

                        Hi Jason,

                        I'm from Vancouver so I know what you mean about not being allowed on the transplant list unless you go on dialysis first. Seems so unfair when you look towards the US. I just wanted to tell you some useful information: When this was told to me I called University of Washington and Cedars Sinai in Los Angeles (down the west coast so close for me). You can get on the tranpslant lists in the US even though your from Canada. They accept you under their 'international' transplant list. So if you qualify in Canada for a transplant then they will ask for copies of your records and they will asses as well and then have you fly down/ drive down, meet them and perhaps redo some tests for them as well. Just an option while your going to be on Canadian list too. I wasnt given a long wait for the international list. I am Blood Type A+ and they estimated 3 years which was LESS than the list here in Canada. Give it a try if you cannot find any donors from family, friends or co-workers first. It's really worth a try. Maybe you can try New York?? Various centers there i'm sure! And there is no limit on how many lists you can get on or in how many states. First though, I sent out a letter via facebook friends, email and mail about my situation and what giving a kidney entails including that kidney donors live longer than regular people. It's true, you can look it up. In meantime I wish you luck with your imminent dialysis and hope it helps you feel better. Your still doing great at such a low function. Not many get that low without needing diaylsis.

                        Nerak ~ Thank you for asking about me. My transplant went great and I am doing great. I hope you get your call for one soon! Especially your perfect match call, your best case scenario! I matched my husband 3/6 which everyone seemed to think was extremley rare. Just lucky.

                        Take care,

                        Lana
                        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

                        Comment


                        • #13
                          Re: How low can you go?

                          Jason.....I didn't know that you had to be on dialysis before getting a transplant in Canada, but Lana did make some good suggestions. And in case you DO have to start dialysis, have you decided what kind you'll do & do you have an access ready?

                          Lana......Thanks, but as long as I'm feeling good, I don't want a transplant yet. My doctors are all amazed that I've stayed stable at such a low GFR for so many years & I'd like to keep that going as long as I can. That's why I'm listed for a perfect match.....My drs wanted me on the list, but since I wasn't ready for a transplant, my transplant neph came up with the idea to be listed that way (which he compared to winning the lottery). But of course if a perfect match did come up, I'd take it.....I'd be crazy not to! (no comments, Marina )....but I'm not holding my breath.

                          Comment


                          • #14
                            Re: How low can you go?

                            Hi Nerak!!

                            Yes, I totally agree with you by the way... hold off as long as you can as long as you can maintain GFR and feel healthy there is no reason to rush transplant or even think about dialysis. This is why I held out as well. I felt absolutely fine with no symptoms. In my case I could see that the GFR was falling and in spite of diet I could do nothing to maintain it. It went from GFR 15 to GFR 9 in a matter of a year.. I knew I couldnt get on transplant list since I wasnt on dialysis, so I just went for it and had my transplant.

                            I'll never know though since yesterday I went in to have a renal ultrasound to check on my new kidney. The radiologist told me that my new kidney looks great! AND my old kidneys are still functioning as well. He could see them filtering urine even now!! This surprised me, I thought they would cease as soon as new kidney took over. So I guess i'll never know, maybe I coud've made it another year to 4 or 5 GFR?? It doesnt matter now though.. I was declning whereas you are maintaining. Keep it up!!!

                            Lana
                            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

                            Comment


                            • #15
                              Re: How low can you go?

                              Hi, Lana.....I think you did the right thing for you. If your GFR was declining like that & you had a donor, it was the smart thing to do. I feel fine & don't want to do anything until I have to, but I still worry every time I go for labs......You'd think I'd be used to it by now & trust that I'm doing well since I feel fine, but I get nervous every time.........and I'm soooo relieved when I see the results. I joke with my dr that I must be the only person who's excited to see a GFR of 8! Every now & then it goes down to 7 & I worry that "it's happening", but then the next time it's back to 8 & I do my happy dance! So I really think you did the right thing. And it's a bonus if your old guys are still working! The more, the merrier!!

                              Take care,
                              Karen

                              Comment

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