Stage 4 ckd

[greatest]

Hi to everyone. Apparently the kidney disease I have is genetic. Called Thin Membrane disease. My father was the carrier..... My sister died in 2010....I have had it for 9 years like a yo yo. Readings OK then all of a sudden haywire. Living in South Africa I feel pretty exhausted when it is very hot. Trying to eat little protein and potassium. But very interested in everything that is posted. I am 73.... Too old for a transplant. Thanks for having me and Blessings to all.

[Hidden]

Hi greatest and poor you but thanks for sharing this with us and you look well and come across as positive which all helps.

Do you respond to a gluten free diet as I believe theres a link with IgA and both conditions, TMD and CD.

And I wish you well with this. 😊

[greatest in reply to Hidden]

Hi Jerry. No I don't follow a gluten free diet and wasn't aware there was connection. Will definitely look into it. Thanks.

[Zest]

Hi greatest

That is a lovely photo of you. I also wish you well with everything, and am glad you're joining the Healthy eating community - I hope you'll enjoy participating here.

Zest

[greatest in reply to Zest]

Thanks so much for the welcome. Frankly I want to remove the picture because I didn't realise it would be so big but now I don't know how to delete it 🤔😊

[Hidden in reply to greatest]

If you click on edit then click remove image, et voila...😊

[greatest in reply to Hidden]

Completely lost!!! Will wait for my son to come home!! Thanks anyway. I am not what you might call exceptionally technically minded 😂

[Hidden in reply to greatest]

I'll do it for you and then its done. 😊

[greatest in reply to Hidden]

That's so kind. Thanks a lot. 😊

[Hidden in reply to greatest]

You're very welcome. 😊

[Zest in reply to greatest]

If ever you would like to edit your posts - make any changes etc, just click on the 'More' button that is towards the right-hand-side and you'll see some options - including 'Edit' - and regarding photo removals - you'd just need to click on 'Delete image'. But I still think your photo is very nice! But of course, you have the option to amend anything, so hope that is helpful.

[greatest in reply to Zest]

Thanks Zest...... I am still searching for the edit!!! Will wait until my son comes home 😂

[andyswarbs]

I have no experience of kidney issues, except a nephew. There is evidence that a plant based diet can at least help you live longer and healthier. Take for example renalandurologynews.com/chr...

So the next question is how far has your diet transitioned towards plant based...

You may be particularly interested in this article on reversing stage 4 kidney disease using plant based approach by following Dr Dean Ornish. ornish.com/zine/i-was-diagn...

Regarding genes, not all are permanent. Some can be turned on, and indeed turned off, by the dietary choices we make.

[greatest]

Thanks Andyswarbs..... I shall go through those links as soon as I get home after work. Will let you know what I eat or so on that coincides.

[Penel]

Sorry to hear about your sister, greatest. My husband has just been diagnosed with CKD, which is described as age related and not genetic. He has no other health issues and we wouldn’t have known about it except for a routine blood test!

There are lots of healthy recipes on here, especially if you need to go gluten free. Hope you manage to keep your readings under control, take care not to go too low protein.

[greatest in reply to Penel]

Thanks for the message Penel. Pleased explain to me about too low on Protein? I have been put on 41 to 44 grams a day?

[Penel in reply to greatest]

If your doctor has told you the amount you need, that’s good to know. Sometimes people decide for themselves, which may not be so good!

[greatest in reply to Penel]

Actually it was the Dietitian who worked that out for me. She also said that anything that has Phos in the ingredients I must avoid at all costs. Talking about costs it sure can be an expense affair!!!

[JimVanHorn]

Well my dear, I must tell you how important diet is to kidney disease! I am in stage 4. In September 2018 my creatinin level was 5.1. Since then have watched my diet and now it is 3.7. Yes potassium is important, so NO POTATOES, bananas, tomatoes (ketchup), oranges, raisins, black beans or granola. One potato can have over 450 mg of potassium! Stay away from Phosphates: all nuts, chocolate, bacon, ham, sausage, hot dogs, lunch meats or canned meats because they use phosphorus as a preservative. All dark soft drinks (coke, pepsi, dr. pepper, etc. have phosphates, but light colored drinks (7-up) do not. So what can you eat? Apples, grapes, pineapple, cauliflower, onion, green peppers, radishes, summer squash, iceberg lettuce, french bread, corn, rice, cream of wheat, popcorn, and many other foods. Look up a kidney diet on the computer. My creatinin goes up and down according to my diet!

Also, when your kidneys are not in good shape other things happen to your body beside your urine. Your kidney digests insulin, so if your kidneys are bad insulin can increase in your blood and you get sugar lows. Also, there is a hormone given off from the kidney that regulates the release of red blood cells from your bone marrow. It is called erythropoetin. You may become anemic and feel tired all the time. There is a drug called Procrit that is injected that restores your RBC's. Your nephrologist can give this and tell you how much water to drink daily. The amount of water changes with the health of your kidneys. So do the best that you can, but bad kidneys are no fun and can go bad very quickly.

[greatest]

Hi JimVanHorn..... I sent a reply to you last night but I seem to have done something wrong. I don't think you received it? It doesn't appear here so I am wondering what I did.......