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  • question about care

    When I was first diagnosed with CKD a year ago I saw the nephrologist but since then I have only been seeing his nurse. She says it is best to continue to see her because the doctor is hardly ever in the office so if i tried to see him I might get lost in the shuffle. She also said if there are any major problems she would consult with him for answers. My question is does anyone else only see the neph nurse instead of the doctor for their care? I'm afraid that I might not get the best advice but before looking for another doctor was wondering if this is somewhat normal.

  • #2
    Hi 1scardycat, I see my nephrologist every month. for 9 years so far. mabe you need a doctor who isn't so busy that he can not meet you at least to discuss your lab results. but i suggest you call the doc first and voice your concerns that mabe you aren't being taken care of as well as you would like. but if you live out in the middle of nowhere, your options will be limited.

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    • #3
      Originally posted by patricia0805 View Post
      Hi 1scardycat, I see my nephrologist every month. for 9 years so far. mabe you need a doctor who isn't so busy that he can not meet you at least to discuss your lab results. but i suggest you call the doc first and voice your concerns that mabe you aren't being taken care of as well as you would like. but if you live out in the middle of nowhere, your options will be limited.
      Thanks Patricia did you see your nephrologist in the beginning before you were on dialysis also? The nurse discusses the lab results with me but its a lot of you don't need to worry yet attitude. I might have to try to look around.

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      • #4
        no one recommended that I see a neph. dr. back in 2006 which I feel was wrong, I knew nothing about ESRD and was too dumb to look into it, my biggest mistake :-( we put our blind faith into the family doctor because we have known him for such a long time. but he is not the professional kidney doctor...I should have been referred to a diet specialist but no one suggested that. I was just sent to a surgeon to decide on hemo or PD. (hemo was out because my veins are too small and I'm scared silly of needles) It does make me mad that I was given the "no need to worry yet " attitude also. but what ya gonna do? that's history now. I just try to nudge the newbies here online to be more pro-active about their health

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        • #5
          How long have you Patricia 0805 been on dialysis? How long have you had CKD? Is dialysis thast haste. Thanks phily

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          • #6
            What I meant was is dialysis that hard, or can you deal with it as part of your daily life

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            • #7
              Hello rusty13 and welcome to the forum. I started my 9th year on PD July 13th and I deal with it quite well. I'm retired from the airline industry so i fly free and I haven't let PD stop me. it just takes alittle more planning. I'm fortunate that my kidney function improved to where I only require 2 exchanges a day down from 4 originally. PD is a part of my daily life, I consider it my full time job and take it quite seriously. (never had an infection!) paying attention to your lab reports is so important to stay feeling better

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              • #8
                Hello rusty13,

                I've been an HHD patient since starting hemodialysis in 2012. During that time I've maintained my full time job and traveled for business and pleasure. My care partner/spouse and I have assimilated the routine of 4 to 5 HHD treatments per week into our still active lives. The imposition has been minimal, especially with the capability of conducting nocturnal treatments to free up the daytime and evening hours. When I travel, I will treat nocturnally exclusively so that I've got days and evenings free. Dietary restrictions have been minimal with the amount of dialysis I get weekly and when I am treating during the day will use the time to compute, watch DVD's or TV, read or listen to music.

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                • #9
                  I don't like that. I would change Doctors - that is what I did because of the same. Good that I did. Don't waste your time and money.
                  :
                  Last edited by Pookie12; 09-07-2015, 04:33 PM.

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                  • #10
                    Originally posted by Pookie12 View Post
                    I don't like that. I would change Doctors - that is what I did because of the same. Good that I did. Don't waste your time and money.
                    :
                    Pookie12 did you also get stuck seeing the nurse to never see the doctor again? When you changed to a different doctor did you get different care? what did they do different? A little scared to change because I am afraid to start over with a new doctor.

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                    • #11
                      1scaredycat - been there, done that on switching docs. I began pd as part of a Catholic hospital med group in Orange County (Disneyland) and unfortunately I told Da Vita I moved. Only 30 miles away, but the quality of healthcare in general in Riverside County is 3rd World in comparison and I went from being 1/20 patient ratio at a hemo center to a "PD Central" with 300 patients in a rural setting. To make it even more special, I was a guinea pig for a young nephrologist about 10 seconds out of his residency as my doctor. As for the quality of care and the doctors, all I know is that Da Vita is collecting like $586,000 every 6 months for me to be a patient according to the billing statement I receive. So I am pushy and I question aspects of my care I am not comfortable with. It helps my last job was as a hospital Administrator for Long term Care, so I know the business better than most. Don't settle for second best...you only have one pass at getting this right to get to your transplant, so protect yourself at every junction. It is getting better, but Patricia has been waiting 9 years on pd and she makes it work, you can too.

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                      • #12
                        Thanks richolquin for the reply. You have quite a story. 586,000 is a crazy sum. I appreciate all advise I can get. Its a scary process but we have to live with it because we can't live without it.

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                        • #13
                          I also am very familiar with helping people coordinate their benefits esp. here in CA. When I first got one of those statements from DaVita, I almost died thinking that was what they were asking from me...turns out that is how much they "bill" and the real numbers of what they get paid is like >$150k...but its still $150,000!!! I have a friend in Northern CA whose co-pays are like $16k per month!!! It is crazy!!!

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                          • #14
                            Hi there richolquin, yes the amount Davita bills is crazy, at least medicare forces them to knock it down to "somewhat" reasonable.
                            just an FYI, I am not "waiting" for 9 years, I am not on the transplant list. several factors make that decision for me
                            . I'm 65 years old now (wow-when did that happen??!) PD works well for me, and I learned way too much about those anti-rejection drugs that you would be required to take forever. a transplant usually only lasts 10 years if you're lucky, and I would not care to go thru that major surgery, recovery at possible 75 years old. my life isn't perfect, but as you say, it works

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                            • #15
                              Patricia when did you learn about the anti-rejection drugs? Did the doctors inform you or did you do your investigation on your own?

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