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  • diagnosed for awhile, always panicking before dr visit

    I was diagnosed with stage 3 ckd about 3ish years ago (eGFR in 50's). in addition, I have mild CAD (stent), borderline high blood pressure, slow IBS, diabetes and migraines triggered by light, and medium doses of omega-3, fermented foods, and chocolate. I am one of those lucky people that can't tolerate the usual medications (statins, arb/ace inhibitors, beta blockers, etc). I've been able to control my diabetes and ckd reasonably well by diet, exercise and minimal drugs. I control blood pressure by exercise and meditation.

    I believe my kidneys were damaged by years of lithium, ibuprofen (chronic pain), and long term antibiotic use (misdiagnosis). Now I'm faced with high uric acid levels and can-not-stay-awake fatigue after a long day at work or hiking.

    I'm looking at diet changes but it seems to be in conflict with my diabetic needs. For example, I'm limited to 20 g carbs and need 500 calories per meal. I eat almost no grains, start with vegs till I hit my carb limit then add meat to fill in the remaining calories. adding beans works for a few days then my BG level starts to climb.

    I try to treat my self by the numbers especially when using alternative treatments such as benfotiamine (proteinuria), baking soda (eGFR, BG) and Cannabidiol (systemic inflammation, chronic pain, depression, and BG)

    I fear checkups with my kidney doc because I do not want to hear if my eGFR is dropping. I see CKD as a slow death sentence. if the past is any prediction, dialysis and transplants will not be options because of severe side effects from medications. I fear more than death, a life alone as I lose mind and physical ability to work. I do not want to end up like my step father, 400 pounds, grossly obese from heart meds and passing each day without enough brain power to do anything but watch TV.

    I'm not sure if I'm looking for anything except to tell my story and maybe find something that my dr's may have missed. I also want to stay healthy for as long as I can. I ended a f***ing miserable marriage after my stent wakeup call and now I have a really nice GF I haven't talked much with her about my CKD am not sure how she will react if my CKD get bad enough that we can not travel (shared travel is *major* part of a relationship).

    so that is my story. thoughts?
    Last edited by echoman; 12-16-2015, 02:47 PM. Reason: added eGFR number

  • #2
    Quality of life is always superior to quantity of life. Live each day to the max, for one day there will be no more days for you or me. Jesus said the dead know nothing, how will you know when you are dead? You won't or else you would not be dead. Live every breath like it is your last, for it might well be just that!.

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    • #3
      "I have a really nice GF I haven't talked much with her about my CKD am not sure how she will react if my CKD get bad enough that we can not travel (shared travel is *major* part of a relationship).
      so that is my story. thoughts? "

      I understand the fear of hearing your GFR is dropping. I get worried more before every blood work also. We can't do anything about it. But it is better to know a head of time than not at all. My thoughts are tell your girlfriend about your disease and the effects. If she can't handle it then it's only fair for you and her to separate now. As for the travel...You can still travel with CKD. It just takes more planning. Dialysis centers are everywhere and if you do home dialysis you can take it with you. It will interfere with your trip a bit but if that is the only thing holding your relationship together then it is doomed anyway. I would also say to make sure you tell your doctor about any alternative treatments. Some alternate treatments can harm your kidneys since they are not doing their job of filtering things out. If you haven't seen a dietician then request your doctor send you to one. This could help you out with your diebetic diet and renal diet. Good Luck

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      • #4
        thanks for the suggestions. I am *very* cautions before trying any alternatives. I try only if there are legit research papers in places like pubmed and with the knowledge of my kidney dr. on the plus side with some of the trials, I'm now seeing BG numbers in the low 80's multiple times a day, down from 100-120.

        I'm not a fan of dietitians. when I was diagnosed with high triglycerides (500 range), I followed what the dietitian said. rewarded with trigs in the high 600's. again went to dietitian when diagnosed with D. eat more whole grains, she said. did and bg climbed. when I pointed out what happened, she said the dr could give me more medication. Really?!? so I gave up and started a low carb diet which got me off of everything except metformin and brought my a1c down to 6.

        fyi, collection of CBD research papers. http://www.calgarycmmc.com/kidneys.htm promising but looks at least to be not-harmful.
        sodium bicarb and CKD http://www.medscape.com/viewarticle/706043

        wrt relationship, this issue is a bit cloudy because my ex held me hostage with her health problems. I can't do that to anyone else but I will have that chat after my dr visit monday.
        Last edited by echoman; 12-18-2015, 07:31 PM.

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