I'm new here: I am new here, 74 years old and... - Kidney Disease

Kidney Disease

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I'm new here

BarbnKY
BarbnKY

I am new here, 74 years old and have been diagnosed with Chronic Kidney Disease, Level 3 in Nov. 2016. I live by myself with no support from anyone so I going it alone.

I get very little feedback from my Nephrologist and very frustrated on who to turn to for help. He does blood tests, I get copies and that's it. Never went over them with me. He referred me to Good Measures dieticians who are online and that will not work for me. It is too complicated. Haven't figured where to go from here.

19 Replies
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Hi BarbnKY,

I kind of know how you feel. That's why I joined this group. I do labs once a month and see my doctor every 3 months. She looks at the labs and says "your holding your own" and that's it! So I'm trying to do research myself on diet. It's very scary to me.

How do you do labs once a month? Who does them. I see my Nephrologist every 6 months and he bare talks with me. Still don't know what I should eat. The company he recommended I contact is Good Measures and everything has to be done online. It is too complicated for me.

Hello there,

I totally understand how you feel I've been feeling like this for many years. I realized you get no where with asking questions so that's why I decided to get on this group page to find answers through other people. I have started to be my own advocate when it comes down to things that goes on with me health wise. It's very frustrating not knowing the answers to the questions about your body. It just seems like the doctors are learning as they see you in the office and they think by prescribing medicine help but sometimes the medicine has some of the worst side affects. The medication is just a temporary fix. I just wish I knew the cause and how to treat the source of the problem once and for all.

Hello.

I am at stage 3B kidney disease my level hovers around 38 to 44 . Here in the UK we are not referred to a Nephrologist until we reach stage 4 but with exception. I was told to eat a normal diet in moderation, not too much protein or salt, and drink plenty of fluids. I have hypertension which is well controlled with medication, and get my blood tested every 3 months at my Dr's surgery. Kidney function can fluctuate, especially with illness and inflammation. You say you are at stage 3, what is your eGFR ?

Stage i has an eGFR of 90+

Stage 2 60 to 89

Stage 3A 45 to 59

Stage 3B 30 to 44

Stage 4 15 to 29

Stage 5 15 or on dialysis

BarbnKY
BarbnKY in reply to bowler

I'm not sure now because I don't understand the latest blood test he ran. It's lots off pages and confusing.

Joylin246
Joylin246 in reply to bowler

Like you I am in the Uk . I was Diagnosed Stage 3 approx 3 months ago . I have recently had operation and have been told I have had problems since 2006 and have never been told until now it mahpkes me very angry as I could have been on a different diet since then . My GFR. Went down to 29 due to infection. It is now 47 On last test . We do not get any advice about diets on asking I got told to go on UK Kidney website !! Most sites tell you to ask at your renal unit. Or ask nephrologist .Think we only see them when. We get to stage 4-5 I have never been told what my potassium level are or any other levels you just feel like you are wandering around in the dark . Rant over !! 😪🙄

You need to see a renal dietitian with a copy of your blood tests. She will need to see your levels such as potassium, phosphorus, creatinine and egfr. Then she will work up a diet for you which will slow down the progression and can improve your egfr and creatinine. I'm 67 and diagnosed last year egfr 47. After a year on the diet my egfr is 52. Every diet is different as it's based on your blood tests but basically for most it's low protein, low salt, fruits, vegies, starch and fat. Go to the library or bookstore and pick up books on ckd. They will explain everything to you. Also davita.com is a good resource. If possible, I would dump that nephrologist and get someone who cares about helping you improve your numbers. At ckd stage 3, diet and exercise is key. Also for me, drinking lots of water. Good wishes.

BarbnKY
BarbnKY in reply to Catmommy

Thank you. I did find a renal dietician on the National Kidney Foundation website and have an appt. the end of the month, but I should have been on a diet 6 months ago.

I am also looking looking at the DaVita site for information. I do exercise a lot. Thank you.

LarryGee
LarryGee in reply to BarbnKY

Davila has 3 plans for a dietitian

I. 30minute consult call.45$

2, 3 30minute consult call,120$

3, 2 Consult calls a month

with an app,,which u can use to take photos,,regarding if the food ur eating is right for u,,,they said can do on daily basis.

BarbnKY
BarbnKY in reply to LarryGee

I did have consult last Friday and the dietitian did go over my blood test and made some recommendations but I'm still confused.

orangecity41
orangecity41NKF Ambassador

Hello BarbnKY, I too am about your age and diagnosed with stage 3 CKD. My Doctor put me on a renal pre-dialysis diet and a exercise regimen. I did research on recipes to incorporate diet, and appropriate exercise. So far condition has stabilized. I am on an every 6 month schedule for CKD and blood work. Seems our health care is more parceled out now. One has to be more proactive.

BarbnKY
BarbnKY in reply to orangecity41

I only wish my Dr. would communicate verbally with me rather than sending me away with tons of paperwork to figure out myself. Where did you find a pre-dialysis diet? I have read basically what I should and shouldn't eat but I don't know how to put it together for a daily diet. You have no idea how much paperwork I have from my year or research. Even took a class on Kidney Disease from Humana.

orangecity41
orangecity41NKF Ambassador in reply to BarbnKY

My Primary Doctor gave me a 7 page predialysis diet. Basically have limits on phosphorus and sodium and watch intake of potassium foods. Also limit on protein. I take prescribed multi-vitamin also.

Maybe ask your Doctor for a pre-dialysis diet. I think it comes from NIH?

Guess too diet depends on other factors.. I had high triglycerides and cholesterol also. I did also get some kidney diet books which helped me. 1 author of books I found helpful was Mathea Ford

Hi, my kidney doctor ordered my labs for once a month, but I actually see her every three months. She shows me the lab printout, I don't really understand it, my entire appointment lasts about 5 minutes! My doctor never told me that I could possibly get better thru diet. On my own I requested to see a kidney dietician. The dietician quickly went over some info, gave me some handouts, but never made up a meal plan for me. So I'm trying to piece together info to help myself with the threat of dialysis over my head every day.

Got more tests from my Primary Care Dr. Last week and she said the results were better than my Kidney Dr. had. Still struggling with the numbers.

Going to a dietician on Friday.

Same with me. I did not know you could get better with diet. I don't have meal plans that I understand either.

I am pretty much in the same situation you are

Hidden
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Hi BarbnKY,

I'm new on this web site too. Like you, I live alone. In fact, I'm the last person in my immediate family still living even though I'm only 64 years old. So I am truly going it alone.

I've definitely had to learn to be a self-advocate regarding my medical care. My nephrologist has pretty good patient rapport but seems to be truly perplexed with my case. And yet he wasn't referring me out to another nephrologist.

My father had CKD. I was one of his dialysis care providers and so attended numerous appointments with his nephrologist over the years. I also grew up in a family where we modified our diets as he needed for his renal function. Consequently, I bring some working understanding of all of this to my own situation.

That being said, I find that it is still sometimes difficult to manage all of this by myself. For your diet, I strongly agree with what others have said--take your labs to your renal dietician. Your dietician will help you set daily target levels for sodium, potassium, and phosphorous. He/she will help you create a weekly menu. I think you'll find the renal-friendly recipes in web sites like Davila.com to be helpful as you learn how to plan your own weekly menus. (I know that I found those recipes to be invaluable.)

Then, there is an app that has been very helpful for me;

HealthWatch 360

This app is free and will work on smart phones, either Apple or android devices. This app is connected directly to the USDA database. So when I go to the grocery store I can take a picture of the bar code for an item I'm considering buying. The app will then tell me the full nutritional make-up of that item. I can also enter my own recipes into the app and it will calculate the nutritional information for a single serving of the recipe. And finally, I can pull together my daily diet and enter it in the app. It will then tell me my total daily nutritional intake so I can be sure that I'm adhering to the potassium, sodium, and phosphorous levels my nephrologist has set for me. The app is free.i have found this app to be invaluable🐶

It sounds like you're pursing the right information. With an effective dietician you'll get this figured out.

Matgie

Thank you. Will check app out.

I go to the nutritionist on July 29.

Go to my primary care Dr on Friday. She is new and not comfortable with her yet.

Hope I can figure out how to get back to this site again. The Iphone is complicated for me to use sometimes

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