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  • Shocked by neph

    Hi, everyone -a friend of mine who ive been asking questions on here about found out mon. that his creat is 3.3 -GFR-20 -I had talked to him about his app. today and that the Dr. would most likely get him set up for the fistula-I am not on dialysis but thought that at that level of function it would be smart-The Dr. told him he was not that progressed to talk fistula-CAN YOU BELIEVE THAT-I am absolutely appauled and disgusted -I mean yes hes going to start having people tested for transplant and thats great -Id much rather him never have to do dialysis and go to transplant right away-but I know that takes time and you never know how long your kidneys will hold out-I mean is it just me??? wouldnt you want to have a fistula "just incase" instead of a er cath if needed? I just think its unprofessional and just flat out wrong they said they are going to closely monitor him which is a good thing im just shocked what do you all think?
    ckd,stage3,due to birth defect/refulx,controlled b/p

  • #2
    Re: Shocked by neph

    My husband is in the late stage 4, his GFR is 15 and holding, creatinine 3.08. He doesn't have a fistula. I don't know what is so shocking about it. His nephrologist says is doing great, considering about he was diagnosed about 10 years ago at stage 3.

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    • #3
      Re: Shocked by neph

      Its shocking because he has progressed rather quickly -I dont think he needs dialysis right now but why wait till you get to 10-15% function and feel like total crap then get a fistula because I have heard that it takes 3-6months + to mature and if your already that low you could need dialysis before the fistulas even ready and end up needing a cath. which is not the best choice so ive heard that fistulas are a better option for patients-I think it would be smart to get one ahead of time if you never have to use it great but I think it could be dangerous to wait till theres practically no function at all-from all the info and literature ive read about fistulas -it is normal procedure to start discussing fistula when you get below 30%
      ckd,stage3,due to birth defect/refulx,controlled b/p

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      • #4
        Re: Shocked by neph

        Originally posted by jenjen76 View Post
        Hi, everyone -a friend of mine who ive been asking questions on here about found out mon. that his creat is 3.3 -GFR-20 -I had talked to him about his app. today and that the Dr. would most likely get him set up for the fistula-I am not on dialysis but thought that at that level of function it would be smart-The Dr. told him he was not that progressed to talk fistula-CAN YOU BELIEVE THAT-I am absolutely appauled and disgusted -I mean yes hes going to start having people tested for transplant and thats great -Id much rather him never have to do dialysis and go to transplant right away-but I know that takes time and you never know how long your kidneys will hold out-I mean is it just me??? wouldnt you want to have a fistula "just incase" instead of a er cath if needed? I just think its unprofessional and just flat out wrong they said they are going to closely monitor him which is a good thing im just shocked what do you all think?
        JenJen,

        It is never too early to talk about this subject. In fact, this is the time to talk about it rather than wait until the last minute. There is not telling how the progression of your kidney failure will be. It can be years, months or weeks....
        I would let your nephrologist know that you want him to refer you to a vascular surgeon just to get the workup. This doesnt mean you have to have surgery, but will at least put you in a sport where everything is in order to do so.
        ______________________________
        PD - 13 Years
        3 Transplants
        In-Center Hemo - 6 Months
        NxStage - Since April - 06
        Facebook: Dialysis Discussion Uncensored

        ________________________________

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        • #5
          Re: Shocked by neph

          Thankyou-I agree!!
          ckd,stage3,due to birth defect/refulx,controlled b/p

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          • #6
            Re: Shocked by neph

            I first attended information seminars about the different types of dialysis. I chose Peritoneal dialysis at home. Has he been well informed about what type will be best for him? Maybe he will chose PD. Then he will need the catheter in the abdomen. I'm on PD and like it so much better than hemo which I hated. I was at GFR 11 and not yet on Dialysis. I still felt really good.
            Lupus 1976
            Kidney failure
            Partial nephrectomy for kidney cancer in 2007
            10% function- getting ready for dialysis or transplant 2010
            Full nephrectomy for another kidney cancer on other side Dec.10th 2010
            Hemo following surgery for 5 weeks.
            Started CAPD Jan. 18th 2011
            Not diabetic.

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            • #7
              Re: Shocked by neph

              This is my first post. I had my fistula put in 2005 and didn't have to use it until Jan. 2012.
              I started Hemo Dialysis at Divita center and it was ok but takes up alot of my time so I had PD cathater put in 6 days ago and get bandage off tomorrow and if I am healing well I will start my training right away but will need to be on Hemo for another week or so.
              Well that is my first experience with my new life and it has not been a bad one. I am so fortunate to have great tech's and nurses and complete use of Dietition, social worker and anyone else I may need. I have only been to 1 Divta Center, but I have heard that they all arn't just alike, but I have no other to compare with. Dialysis wasn't scary for me I was a little nervous the first time but after I new what to expect it was good and I have made some friends of other patients and all the staff, They are all so helpful when I have any questions and either have the answer or will get it for you.
              I have only been doing this for 3 months and don't have all the answers but will be glad to share anything I know with anyone.

              Donna

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              • #8
                Re: Shocked by neph

                Hi Jen Jen,

                My experience is that even though I had progressed from GFR of 15 to a GFR of 9 in about a year I never had a fistula put in either.
                My hospital told me that I was a good candidate for PD and if I we ever should need dialysis then as soon as I felt any symptoms at all they would do the PD surgery. They told me that they would give me drugs to deal with any symptoms to help hold off the two weeks prior to when PD cath in abdomen would be ready. I never had any symptoms and went straight to transplant with no dialysis at all.

                I dont know anything of dialysis of course but this is just my experience. If I had needed it I was happy to have the surgery and wait the two weeks with medical help to go on PD.

                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

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                • #9
                  Re: Shocked by neph

                  My GFR is 23 and creatinine is 2.5. My Neph and I have briefly discussed the different types of dialysis, however, I have never been told to get a cath placed prior to really needing it. I can see where it would be more urgent though if the rapid decline continues. I guess it just depends on the Neph and what he or she warrants as necessary. I am also in the medical field and have a hunch that insurances won't even consider doing that type of surgery without certain criteria being met. Just some food for thought.
                  Type 1 Diabetes-1982 (currently on insulin pump therapy)
                  Acute Renal Failure due to experimental drug(Aminoguanidine)-1996
                  CKD Stage 4


                  "In the middle of difficulty, lies opportunity." Albert Einstein
                  We must go through the storm to appreciate the sunshine!

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                  • #10
                    Re: Shocked by neph

                    Food for thought: I had my first fistula surgery in Jan 2011. Four surgeries and one year -exactly- I finally got a working fistula. My vascular system is bad. The vessels are very fragile. At a 15 gfr you need to be getting some sort of access. You don't know what complications you may run into. In addition , you need approx. 3 months healing time to use it. My nephrologist insists that his patients have a fistula, then you can proceed with a p.d. port. The rational is this-What will you do if the p.d. becomes infected (can't be used)? He doesn't like to use vessels in the chest due to higher rate of infection.
                    In March 2012 , I had a p.d. port placed and began dialysis. I can't begin to tell you how much better I feel already.

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                    • #11
                      Why would he not be a candidate for peritoneal dialysis? The catheter takes only two weeks to heal before using it. Meanwhile they put in a permcath for temporary hemodialysis. The peritoneal dialysis is much gentler on your body and more effective. No nausea. Fewer dietary restrictions. And it is done continuously during the day...the fluid just dwells in your peritoneal cavity. My husband has had to be on hemodialysis a couple of times and he just HATES it. He has been on continuous ambulatory peritoneal dialysis for 3 years this month and is doing VERY well. The dialysis nurse and our nephrologist say he is their star patient.

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