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  • Newbie here.

    Hello. I'm a pasty middle aged diabetic woman, who has been dreading CKD for years (worked as an RN for 20 years, disabled for last 15, and also saw my grandma die on dialysis back in 1979-- and yeah, I know things are better now). I'm a 3a, and now anemia is being addressed. I'm opting to not do Epogen or Procrit since I have multiple medical issues already with symptoms being the same as the side effects of ESAs. My goal right now is to increase oxygen to my system (not sure if that's "normal" but from what I've read, low flow rates aren't likely to hurt anything, so sent for an oxygen concentrator for sporadic use) and get with the program with the "renal diet". I have very loose restrictions at this time- but figure it's better to make it more a part of my life before I actually have to, to a) get used to it, and b) maybe prolong time between declining stages.

    I've had my GFR in the 20s before, but it got better with hydration for extended periods. Now they tell me it's for sure nephropathy, and the anemia is from CKD. I have a lousy diet (rarely eat meat, don't cook much because of other disabilities, don't eat enriched cereals, etc.). I'm hoping that a steak I indulged in (6 oz) last week will have helped my H & H and RBCs a little (has before), and I can avoid the whole schpeel about ESAs (and no judgement to those who opt to use them- I get it. We just all have different ways of dealing with things- I also have a severe heat intolerance, and going 3 times a week in the summer doesn't work. I already have to arrange MD appointments for the months between late October and mid May to avoid the baked car situation).

    Anyway, a question I have is probably fairly stupid and superficial, but with the daily limits on potassium, sodium, and phosphorus, does it matter if those are spread out during the day, or could I have something I really like that has 1/2 of the daily amount in one thing, and then 'budget' the rest over the rest of the day? Baked potatoes are a big deal, as are a few other things. I'd gladly give up something later on in the day in order to have a spud for lunch (and plan breakfast accordingly). Because of the weather situation, I won't be able to get in to talk to a dietician for a while, and I'm kind of getting poo poo'd about being so proactive. I know that dialysis isn't something I'd want to do unless I could do it at home, alone- and not sure that's an option.

  • #2
    Hi Jill and Welcome...yes you do see to have many concerns to deal with in regard to your health. The below link has a lot of info about the intake of proteins etc that we have to keep a watch on.

    Wonderful that you have been able to bring your gfr back to stage 3 being in the 20, I did similar with my diet and fluids. As for the dr's, I too agree that we need to be proactive in regard to our own health! I recently dumped my old nephrologist cause she didn't tell me my gfr was in a steady decline...'I thought it was the progression of your kidney failure' Nope!! The low was gfr of 23 due to getting sick, being dehydrated, exhausted and not eating a proper diet. Tomorrow I'm going to a new nephrologist and do hope I'm at the same level gfr or higher.

    You didn't mention what your current gfr level is, but I've learned the only way to really get a 'true' gfr is through a 24hr urine collection...another thing the previous dr poo pooed...In general anything with protein can be eaten based on your blood work numbers, gfr, creatinine and bun are what my renal dietitian uses to create my protein intake and to give me a good diet. Right now i'm at 3b, I can eat 40oz of protein a day and space that out to 10 grams per meal...a typical breakfast includes 10oz of water, 2 cups of coffee, one egg, any style and two slices of toast...this works out to be 7gm for egg and 4grm for toast. Coffee can not be counted in as a 'fluid intake' because of caffeine.

    Just wondering, if you travel by car, can you start your engine and turn on air conditioner? Please do ask any questions, none are stupid, for sure!!!

    Best to you, ml


    • #3
      Hi Jill! Welcome! I am new to the forum myself! I am also a nurse for about 25 years. My kidneys were fried from chemo used to rid my body of cancer two years ago. Let me say this, the diet is key! I lost 100 pounds following it. I am able to only have dialysis one day a week for over a year now. I am over the top compliant. I don’t eat potatoes at all. There are amazing recipes on this site and a good analyzer as well. Please use these tools to help you get started. I am not a Davila patient but this website has been an absolute Godsend for me. Hang in there, be your own advocate, and be compliant. It’s really hard but you will reap the benefits in the end!


      • #4
        My most recent GFR was 46, but when putting my weight in the more specific 'thing', it ended up more like 52. BUN is 24, Cr- 1.3, so not catastrophic by a long shot. Thanks for your replies. Microalbuin panel was all normal.

        The issue with traveling is that I can get places, but getting into a baked car after an appointment could be very dangerous. I lose consciousness if I'm in a place over 65 degrees for more than a few minutes (dysautonomia). I have an ice vest- but that is marginal in the summer when the side of the car could be 130 degrees. I also carry disposable ice packs that activate when smacked around a bit.

        I got some renal diet books, and O2 concentrator is on the way, to get a boost now and then when I do get short of breath. Also noticing more coughing (not dry), and while Lasix helps, I'm cautious about it if it's a bad reflux day and getting fluids in is dicey. I'm totally isolated (all immediate family is dead, no relatives nearby, biological family scattered around). And this is NOT a good city for making friends, especially being so totally alone.... I literally could drop dead, and likely wouldn't be missed until property taxes weren't paid. It's good to have somewhere to ask questions and even though I'm an RN, I have never wanted to know any more about renal issues than what I had to for patient care.

        Fitteryj, I too am a cancer survivor (acute promyelocytic leukemia) that began in 2010. I'm considered cured now, but it trashed my body. I got arsenic, Ara-C, daunirubicin, methotrexate, M6mercaptopurine and ATRA.

        I'm on medical cannabis, and have found enough information that says it's safe for CKD- I use primarily CBD- the non-psychoactive stuff (was able to go from 33 pills/day with no as needed meds, to about 12- and many of those are supplements like Co-Q 10, the CBD, and a few vitamins I've checked on renal sites). The THC is good for pain, but I don't like taking more than a smidge, as it can make me feel altered-- mostly, I use it at night to get me through with a full night's sleep. My numbers haven't gotten worse since starting on it a little over a year ago. I'm hoping with the anti-inflammatory properties, I can get some relief from degenerative joints and discs, as NSAIDs are a definite no-no.

        I wish doctors read the same books- the nephrologist I saw for a consult last year said that I don't have CKD because my microalbuinuria was fine, and said it was acute kidney injury from dehydration (reflux and gallstone last year). The hematologist I was sent to about the anemia said it's definitely nephropathy from diabetes. I've been trying to minimize the number of docs I see, as last year was a total fustercluck with several doctors who sent me to other doctors, and then never talked to them, putting me in the middle. I was ready to just call it a day, and deal with things at home, only seeing my primary doc for meds/insulin. Let the chips fall where they may- the doctors' offices were making me feel a sense of dread, and that just wasn't worth it. Still isn't- especialy when someone has to be half dead before anything is done.


        • #5
          Hi...I was thinking about you and your situation with being 'alone' too. Like you wrote about not being found, it's very scary for sure!!! Last winter I was Very Sick and didn't leave my home, since I don't work, well my neighbors wouldn't know...ya know who post office lady!!! She saw that my mail wasn't picked up for about a week and banged on my door!!! Just so kind of her...but I'm not sure if they are supposed to do this or not...maybe a call to your local office.

          Then there are some churches that have weekly 'shut in' visits, and you also might be able to get VNA services too...and of course those little necklace or bracelet emergency contacts. At my local senior center there is a program called Meals On Wheels M-F...also, they have a service to come to your home, bring you to senior center..or dr apt, or grocery shopping...maybe there you could meet some people.

          Thinking for myself, making friends at my age, having to push myself into the 'social' arena is not appealing. However, isolation is not great either so I do hope you'll be able to find a happy medium based on your health needs. Sadly I have to agree with you about our medical's enough to make you sicker than you are already with all the red tape and jumping through hoops....I too think "less doctors" is better and I'm Very Lucky to just have to deal with 3!! Wishing you the best!!

          Take Good Care, ml


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