Time to Change Nephrologist

Posted by fiesty76 @fiesty76, Aug 9, 2020

I had a very unsuccessful third visit with the nephrologist. I again asked when I signed in if I could have a copy of my lab report. The receptionist said "I'll tell the nurse". No copy given me. When I told the doc about my experience at the lab, she said, "that was irresponsible behavior for tech not to be wearing a mask the whole time nor asking you questions about covid or taking your temp." When I asked if this was her "preferred lab", she said "Yes. We have an arrangement with them." Should have asked what that meant??? Should have asked instead, What other labs do you use???

When I asked which lab values I needed to be most concerned about, she said, "your lab values all look good....what does that tell me?" What do I need to do differently or pay most attention to until next appt? Her response: You are doing well and then talked about how we could do a Zoom or Facebook appt if needed down the road. I am so frustrated.

I told her about asking for but not getting a copy of my lab to follow along as she went over my labs. "That is not customary." Said: I have hearing loss, you speak softly, (and wanted to say: you are hard to understand anyway because you are from the Phillipines) and I need to read or be shown how to do something to learn. I am not a good listener for learning things.

Could you please see that I have a copy of my labs beforehand for my next appt? Response: I will tell the nurse. Can I please get a copy of my labs today before I leave? Yes, I will have one printed for you. What did I learn about my kidney function from her? Nothing. The wait in lobby and exam room plus additional wait for lab printout resulted in 2hrs and 40 minutes. Time with her? Maybe 10-15 minutes.

Because I have learned to read and understand more about the lab results, I am very happy that my original Gfr values that showed Stage 3a CKD have stayed at 62, a high Stage 2 for the second report in a row. My Bun value was also normal range. However, when I asked what my A1c showed for diabetes, she said that value wasn't reported. It was the time before.

When I got home to go over the report, it showed that my HGB, MCV, and MCH were each High. The report didn't give a number value for the diabetes but these three values have to do with protein and creatine ratio...the normal range for the latter showed normal range 0.021 - 0.161; mine reported 0. 278mg.

I feel like my last lab visit exposed me to a tech who didn't wear a mask or gloves until she began to draw blood and that the doc visit was a waste of time except for getting a copy of the lab report. I will be asking my PCP for a different referral at my next annual appointment.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

I applaud you for seeking information on natural ways to improve your renal functioning. I'm sure that @kamama94 and @gingerw can reply to your question better than I can.

I did notice that @kamama94 has posted about eating plans and has even provided some recipes. She will probably respond to your question about its effectiveness.

Do you have any concerns regarding following this type of eating plan?

REPLY

Hi! I have been on a plant-based eating plan for several years now. I don't claim to be vegan because I do eat free-range eggs and a little honey and I do cook with almond milk instead of dairy milk and vegans often do not use almond milk because almond trees rely on bees for pollination. That said, I use no other animal products, including jello (because gelatin is animal-derived,) meaning no dairy whatsoever and no meat whatsoever. There are many good non-diary products available as well as "mock" meat (beware of extra potassium and phosphorus and spdium in processed foods) and most combinations of vegetables can provide complete protein just as animal sources do.

My "almost-vegan" food plan saved me from dialysis for at least two and a half years but my kidney function dropped dramatically when I had shingles and I wound up on dialysis for 6 months.

Apparently time was my friend because my loweered kidney function climbed from an eGFR of 8 to 17 and I have not needed dialysis since after the winter holidays in 2020.

I have remained on this meal plan and find as time goes by I'm not as tired as I was post-shingles and during dialysis and have been able to resume most of my regular household chores.

When I was first diagnosed with CKD I put myself on a renal diet and when my neph suggested a vegetarian diet I went back to the vegetarian eating plan I had used several years priior. I started experimenting with ingredients, substitutes, kidney-friendly items, and collected three batches of recipes downloaded below if you care to read them. Please bear in mind that manufacturers and producers change iingredients and amounts so nutritional values change also. In addition, since the earliest of my recipe collections was compiled, more information regarding nutrients has become available. Always read labels.

My current "mad chemistry" experients involve home-made vegan magic shell. Yep, as in chocolate. 1/4 C pure cacao (cocoa) powder has scant phosphorus, potassium, and sodium - it's the dairy added to cocoa that makes it a no-no for renal patients. I will let everyone know how my coconut oil/maple sugar/cacao concoction turns out.

Jello is another experiemnt in the works, I'll be using agar (seaweed) instead of animal based gelatin with fairly low-sugar fruit juice and will post results whenever I've finished playing in the kitchen.

As for weight loss, in 2 years on my vegetarian meal rotation I lost nearly 40 pounds. I'm diabetic and have a cortisol problem and am still considered morbidly obese. I'm realistic about losing weight - it takes a lot of time and attention and results are slow. But my A1Cs are normal so I know what I'm eating is right for my diabetes.

Shared files

NATIVE AMERICAN RECIPES (DIABETIC-AND-RENAL-FRIENDLY-VEGAN-AND-NATIVE-AMERICAN-RECIPES.pdf)

RENAL FRIENDLY VEGETARIAN MEALS (draft-without-sample-meals-DIABETIC-AND-RENAL-FRIENDLY-VEGETARIAN-2.pdf)

Yes (Yes.pdf)

REPLY
@kamama94

Hi! I have been on a plant-based eating plan for several years now. I don't claim to be vegan because I do eat free-range eggs and a little honey and I do cook with almond milk instead of dairy milk and vegans often do not use almond milk because almond trees rely on bees for pollination. That said, I use no other animal products, including jello (because gelatin is animal-derived,) meaning no dairy whatsoever and no meat whatsoever. There are many good non-diary products available as well as "mock" meat (beware of extra potassium and phosphorus and spdium in processed foods) and most combinations of vegetables can provide complete protein just as animal sources do.

My "almost-vegan" food plan saved me from dialysis for at least two and a half years but my kidney function dropped dramatically when I had shingles and I wound up on dialysis for 6 months.

Apparently time was my friend because my loweered kidney function climbed from an eGFR of 8 to 17 and I have not needed dialysis since after the winter holidays in 2020.

I have remained on this meal plan and find as time goes by I'm not as tired as I was post-shingles and during dialysis and have been able to resume most of my regular household chores.

When I was first diagnosed with CKD I put myself on a renal diet and when my neph suggested a vegetarian diet I went back to the vegetarian eating plan I had used several years priior. I started experimenting with ingredients, substitutes, kidney-friendly items, and collected three batches of recipes downloaded below if you care to read them. Please bear in mind that manufacturers and producers change iingredients and amounts so nutritional values change also. In addition, since the earliest of my recipe collections was compiled, more information regarding nutrients has become available. Always read labels.

My current "mad chemistry" experients involve home-made vegan magic shell. Yep, as in chocolate. 1/4 C pure cacao (cocoa) powder has scant phosphorus, potassium, and sodium - it's the dairy added to cocoa that makes it a no-no for renal patients. I will let everyone know how my coconut oil/maple sugar/cacao concoction turns out.

Jello is another experiemnt in the works, I'll be using agar (seaweed) instead of animal based gelatin with fairly low-sugar fruit juice and will post results whenever I've finished playing in the kitchen.

As for weight loss, in 2 years on my vegetarian meal rotation I lost nearly 40 pounds. I'm diabetic and have a cortisol problem and am still considered morbidly obese. I'm realistic about losing weight - it takes a lot of time and attention and results are slow. But my A1Cs are normal so I know what I'm eating is right for my diabetes.

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I'm with you! I've been in End Stage Renal Disease for 9 years but have managed to avoid dialysis so far. Although I'm not religious about it, I mostly eat vegetables and grains. If my wife is having a hamburger or some kind of meat that she cooked I will sample one bite just to taste but other than that it's all vegetable stews. I like to mix grains and lentils to go with it. Usually a mix like brown rice, oats, and quinoa with lentils mixed in to make complete protein and lots of good fiber. I also put lots of EVO organic olive (Bragg's is my choice) and apple cider vinegar with a dollop of coarse grain mustard to help emulsify. I like to flavor with turmeric, cumin and different spices (make sure to avoid salt). I was leeching vegetables because I had some potassium problems but realized that I was losing lots of other nutrients in that process so I just try to keep track and only use low potassium vegetables and limit the grains portion. I'm replying mainly to say that I've recently been experimenting with Intermittent Fasting and am pretty happy with the results. I started with 14 hours fast everyday and have slowly built up to 19 or 20 hours everyday. It makes the diet much easier since I'm only eating one meal a day as even if I have a taste of something with high potassium my overall consumption for the day is still OK. I'm not a doctor so of course check it out with your own, but I'm pretty happy with the added freedom that it gives me to still grab a little taste of some of the foods that are not allowed. Be well!

REPLY

You go to a lab where you can log into their portal and see your lab reports. When you get labs, they belong to YOU. It is YOUR responsibility to get your labs from the lab itself. It is your responsibility to have some ownership in your health and try to understand a little bit with what is going on and what your labs are telling you.

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@jkluv7

You go to a lab where you can log into their portal and see your lab reports. When you get labs, they belong to YOU. It is YOUR responsibility to get your labs from the lab itself. It is your responsibility to have some ownership in your health and try to understand a little bit with what is going on and what your labs are telling you.

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My nephrologist is the same way. I see my blood work numbers on my portal they have read checks by them and then I wait! And I’ll wait and I wait. She never calls I have to call her. Then she tells me your numbers look pretty good let’s just wait and see. What is wrong with doctors today?

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@jkluv7

You go to a lab where you can log into their portal and see your lab reports. When you get labs, they belong to YOU. It is YOUR responsibility to get your labs from the lab itself. It is your responsibility to have some ownership in your health and try to understand a little bit with what is going on and what your labs are telling you.

Jump to this post

@jkluv7 I agree most definitely about a patient's responsibility in their own health. However, just looking at numbers on a page may not be enough. It wasn't until I connected with my current nephrologist that I could get the relationship of what different values meant when looking at them as a whole, how they showed differing things going on. Only someone who is trained in that and has the patient's interest at heart to point things out, can do that. I still print out and/or record onto a spreadsheet, my test results. My labs are taken at a commercial lab for the nephrologist, and at my cancer center for oncologist [once a month]. Values differ slightly due to different machines/hydration levels, but very close.
Ginger

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@murmur

GFR values for years have been around 60. My age is 77. My Doctor says this is not a problem.

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Hello,
To the best of my knowledge about CKD (I have CKD3) and I believe 60 is at the high end of CKD3 (I hope I'm not wrong) but it should be addressed and watched to keep your numbers where they are or higher. I am going to be 75 in September and I do follow a diet fairly closely to try to keep it from progressing. Personally I would want more info from my doctor. I hope this is helpful to you.

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