Its my turn to worry now: Well, after over... - Kidney Disease

Kidney Disease

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Its my turn to worry now

Bassetmommer profile image
BassetmommerNKF Ambassador

Well, after over two years of stable numbers, I had a 4 point drop in my GFR. My creatinine also went up. I am frustrated but I am not going to let that stop me. I feel fine and I asked my nephrologist to retest me in a month. All of my other labs look fine or stable. I have not had blood tests in 9 months because of Covid and the labs being closed. I am still a ways from the point of dialysis but I really want to see if it was the test, the lack of fluids from doing it in the morning or what.

I need a good food tracker that includes protein, potassium and phosphorous, glucose and sodium. I was using Davita and they took it down and my library of food so now I have to start over.

19 Replies
orangecity41 profile image
orangecity41NKF Ambassador

Sometimes my eGFR also drops a few points. Last time was a drop of 6 points and I do stay on my diet. I also would like to find a diet tracker for sodium, potassium and phosphorus and also glucose. I think Davita is to come up with a new diet tracker? In the mean time have to guess? I am also searching for a appropriate diet tracker.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to orangecity41

thanks, I was feeling very frustrated.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

You are welcome.

Bet117 profile image
Bet117NKF Ambassador

Hi Bassetmommer,

Not simple, but take a breath. OC is right as creatinine and GFR may vary. The weather has been hot and your body may be reacting to the heat, who knows ? Maybe your system

It doesn't solve the immediate problem, but remember that you are doing exactly what you should - lets see what the re- test shows. Every time I have labs drawn, I am like a chicken sitting on an egg until the results are posted, so I understand how you feel.

As far as the tracker..hmm.

Give the NKF and the AAKP a call and ask what they recommend. Perhaps they may know where to obtain access to this; if not suggest they look into adding one to their websites as it is so vital to so many patients.

Please try to hang in there as worrying isn't going to change things right now.

Stay positive and know that I am always here to support.

Bet

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Bet117

thanks Bet, I appreciate your support. I sent a note to my nephrologist who said just about the same thing with it being summer and all. She also is concerned that the BP med I am on may be impacting me. Also, my PsA has been flaring which is making my other blood chemistry wacky. I am going to go back and retest in a month and see what happens. It was just so disappointing to see any decline.

WYOAnne profile image
WYOAnneNKF Ambassador in reply to Bet117

The NKF is actually going to release the "NKF Patient Network" this Fall. It is filled with info for CKD patients. There is a section on "Nutrition". Maybe this is a place where they could add a really good food tracker. Bassetmommer why don't you contact NKF and see if this isn't something that is possible for them to add.

Hoping your repeat labs are more in line with your stable numbers.

God Bless!

Bet117 profile image
Bet117NKF Ambassador in reply to WYOAnne

Thanks WYOAnne.

Will keep an eye out. If this is implemented it will assist many people..

Stay safe..

Bet

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to WYOAnne

Hi Wyoanne,

Actually, Orangecity and I are trial participants already. I did not look there to see if they have a calculator but I will.

WYOAnne profile image
WYOAnneNKF Ambassador in reply to Bassetmommer

Ya, I'm a trial participant too. It would be great if they would add that food tracker. Did you already submit your opinion survey? I already did mine or I would make the suggestion. You can always send an email to Kelli....

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to WYOAnne

yes I did and I went to look to see if there was any tracker anywhere and there wasn't. Maybe a bunch of us should suggest it.

WYOAnne profile image
WYOAnneNKF Ambassador in reply to Bassetmommer

Yes for sure....I will send an email to Kelli tonight. Hope it can still be done.

I wanted something to be added about transplants - donors, meds, side effects...

So sorry to hear your news... You’ve been such a source of encouragement for me.

I use an app called HealthWatch360 to track all my nutritional intake. It’s connected directly with the USDA data base and so is very accurate. It’s available for android or iPhones. You can take pictures of item bar codes (eg, almond milk different brands) in the grocery store and get the full nutritional data for the item on the spot. It also allows you to enter your own recipes and calculate nutrition per serving.

It’s helped me a lot.

You’re in my thoughts and prayers. I’m now getting labs once a month too. Closer monitoring is better as I sit in the upper third of stage V but am still not on dialysis. I’m truly not sure how much longer I’ll be off dialysis. But I’m ready to start when it’s time, I think.

I hope you’ve got many years before you need to start!

Jayhawker

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Jayhawker

Thanks, I am a ways off still and as I said in my other note to you, it may be the meds I am on. I am going to redo the labs since this was the first one I had in 10 months. I was due in March but then everything shut down. What ever it is, I will fight it. Warriors like us don't give up!

drmind profile image
drmind in reply to Bassetmommer

Best to you with the new lab work but do not get discourage if they're not good. Continue to work the diet and any appropriate exercise as these are things we can control. The lab numbers we can't. Keep us posted.

I know that worry as I have felt it too. My first thought was your BP meds. Praying for a better result next month.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Jamok

Thanks, We will see what new labs show.

Cronometer is an app that tracks all ingredients in food & beverages, you can even scan a bar code and add an item if it's not found. Just like looking a the labels. Also able to set your limits so you can see where you are at each day and how much more you can have or if you're over

(if you want to track every day)

This sounds like another good app. Is it free?

Jayhawker

It is free to use, however there are more things it can track and do if you want to pay for it too.

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