Not sure when it start - but wasn't informed

By CommunityMemberc6311e

2 min read

After 25 years of spousal caregiver and his passing, it was time for me. I went for blood work thinking I might have Lyme, it was negative, but the doctor failed to tell me my eGFR was 59 AND put me on Vimovo 500mg/20mg naproxen-esomeprazole, which is contraindicated. Fortunately over 2 years, I only took maybe 100 tablets.

Managing chronic kidney disease

Now I find out I've lost more function and had I known, then I would have avoided certain foods and the meds. Now I'm struggling to deal with the loss of function, trying to only eat kidney friendly foods and feel like I'm losing the battle because in 3 months it appears I lost some more function.

Going on 71, I am overweight from years of caregiving, but on my own before diagnoses, I was already able to lose weight after peaking during covid. I tend to not eat when stressed, which is just as bad as stress eating. It's a real struggle mentally living alone and dealing with this. I have never being a good eater, force fed as a child, I am having trouble trying to know if what I am doing is right. I'm up to 2 meals a day working on 3, but it's hard. Fortunately since Aug, I've dropped 57 lbs, but wish the eGFR had reflected it.

I apparently was dehydrated for last blood work, so hoping that was the cause of the number dropping a little, but additional blood work showed slight elevation in IgA. PCP sent me to nephrologist, but he didn't say anything about that number.

Living with multiple health conditions

What's hard too is I suffer from White Coat Syndrome, I'm sure from years of dealing with late husband's years of issues and doctors and I suffered from Caregiver stress syndrome over time. I suffer anxiety bordering panic attack when I go to the doctors and it's not easy. Then there are supposed doctors on the web that have supplements that are supposed to help yet no way to know if true.

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Cinders Member
<inline-mention username="CommunityMemberc6311e" user-id="8860474"/> I’m so sorry. That’s a very long time to be a caregiver. I took care of my mom and dad but that was only a little over 4 years. You must be extremely exhausted both physically and mentally. There is a common thread that I read everywhere and that is doctors aren’t educating and alerting their patients to their CKD. It’s really sad. I’m 70 and was discovered at stage 2 but I had a nephrologist, like others, who never discussed a renal diet or how much water I should be drinking a day. She let me get down to an egfr of 30. That’s when my fight or flight kicked in and I came home and researched what I needed to do. I changed out all my food to kidney friendly. No processed foods or fast foods for me anymore. I went plant focused. Since I spill protein I only eat animal protein twice a week. I use plant protein like tofu, quinoa, brown rice, edamame, nuts, etc. I always encourage folks to look into getting a certified renal dietitian. There is a difference in dietitians. If you have Medicare they will pay for I believe 3 visits. Hope this helps out some. 
1. CommunityMemberc6311e Member
 <inline-mention username="Cinders" user-id="6899019"/> Thank you, it's been a long journey for myself & my 4 now grown children as it consumedtheir whole lives too. I've mentioned diet issues to both my PCP & now my Nepherolist & neither recommended a dietician even though I have read Medicare does cover it. I changed my diet myself with research but when I ask them all they keep saying is moderation which mean nothing to someone who already has an eating disorder of not eating. Do I need to specifically ask for the prescription to see one. I do have traditional Medicare but read need doctor referral. 
2. Cinders Member
 <inline-mention username="CommunityMemberc6311e" user-id="8860474"/> yes I would ask for a written referral where you can go where you want. If the area you live in doesn’t have any certified renal dietitians then there are some on Facebook that work with clients through zoom meetings. I did that myself because I couldn’t find any here that looked good to me. A regular dietitian just doesn’t know all the ins and outs of CKD and if you have an eating disorder on top of that or diabetes it gets really complicated. Good luck in getting that referral be strong and don’t let them ignore your request. If they do I would seriously look for another nephrologist. I let my doc go after 7 years, loved her as a person but not as a doctor. Now I have one I absolutely love.