Help and advice appreciated

[Raj363]

Hi everyone my first post on this forum.

I have been told by my renal surgeon that my eGFR has been deteriorating over the last few months and am now at stage 4 of CKD with eGFR =19. He has informed me that due to this I need to prepare myself for possible dialysis in the near future. Does anyone have any views/tips on whether i can delay having to dialyse by life style changes. I am 62 years old and have had type 2 diabetes (insulin controlled)for 18 years. Thanks.

[Bassetmommer]

HI Raj,

Each person is different. But you will find here on this site many of us who have maintained their kidney function by lifestyle changes which include diet. I am one who has been at stag 4 for over to years now with improvements or stabilization of my labs.

The first thing is to become educated and there are lots of sites to find information and here is a place to start.

1. Eat out infrequently. You have less control over your food choices.

2. No fast foods

3. No process foods such as frozen dinners or packaged products

3. Less meat the better, chicken and fish still have high potassium, eat sparingly

4. 1-2 cups of coffee and use real crème not non-dairy

5. Lots of water up to 2 liters unless told by the doctor to drink less or more

6. Incorporate more whole foods in your diet: vegetables and fruits

7. Little to no alcohol especially beer One glass of wine might be ok

8. Cook without salt. You will get used to it and then eating stuff with salt will taste bad

9. Do not take supplement, OTC drugs or other without checking with the doctor first.

10. Get Educated. Take classes on how to manage kidney disease. There are classes on the internet as will as maybe by your local Kidney Foundation davita.com/education/kidney...

Ask questions as we are here for you.

[Raj363 in reply to Bassetmommer]

Thanks for your response Bass. I will take on board your advice.

Got very anxious as I received a phone call this morning from the renal unit giving me information about my dialysis options. Just brought the enormity of what to expect in the near future. I am still reeling at the thought of dialysis. I suffered an acute kidney injury in 2016 due to dehydration and was put on a dialysis machine for 48 hours. My kidney function improved to eGFR being just over 50. I have had regular renal appointments since then but over the last few months the kidney function went down to 17 although it appears to have improved to 19. I am just hoping I can maintain or even improve from that level. I am a life long veggie, do not smoke but used to be a heavy drinker. I have not had a drink for over 1 year now. I have just had a kidney biopsy and was told kidney deterioration was due to diabetes. Any further suggestions and advice to stay at stage 4 appreciated.

[seabreezegirl in reply to Raj363]

Go to a diabetic education class . Veggies are good BUT some like white or sweet potatoes , spinach. Beet greens and so on... are not good for you to eat.

White sugar and carbs keep on a tight leash.

[Raj363 in reply to seabreezegirl]

I have had diabetes for nearly 20 years and have had regular appointments with a diabetic nurse and a diabetic consultant. My HbA1c hovers around 60 which is higher then the ideal so as you have advised, shouldn’t be eating potatoes and bread. Possibly not too late to make lifestyle changes. Thanks for the response.

[seabreezegirl]

At 19 I feel you should follow doctors advice and start dialysis as soon as you can .

[Raj363 in reply to seabreezegirl]

Thanks seabreezegirl I believe the renal consultant contacted the dialysis team to send me information and to lay out various options. He did suggest that I might be 6-12 months away before I need to dialyse. I just want to try and delay this as much as possible

[HealthBuddyMelissa]

If I were you, I would ask my doctor if any of the diabetes meds are affecting kidney function, and if there are any other options. If you are well controlled maybe you can be diet controlled only without meds. Do not do this yourself, discuss with your doctor, first. That would be where I would start. Then learn about a pre-dialysis diet, and how it can help your kidney function be preserved. Best wishes~

[Raj363 in reply to HealthBuddyMelissa]

Thanks melissa. I would have thought the diabetic consultant might have suggested change in diabetic medication however I have been insulin dependent for 2 years now. I do take various other medications for high BP and a statin which might have a detrimental effect on the kidneys? I also take magnesium, vit B complex and turmeric supplements. I can stop these for a while before another blood test to see if there's any difference in my blood test results.

[HealthBuddyMelissa in reply to Raj363]

I wouldn't recommend stopping taking any of those without speaking with your doctor about it first. If you go to drugs.com you can look up the medications you are on to see how they may affect the kidneys, and then bring a list of concerns with you about them. Some drugs you may not be able to change. Turmeric in high doses can have a negative effect on kidneys. I am unsure, however, what is considered high dose. I think sometimes doctors are just willing to let you go to dialysis rather than doing research to see if something else can help. You have to be proactive and make them discuss it with you.

[Raj363 in reply to HealthBuddyMelissa]

Thanks for the advice Melissa. I will check out drugs.com for possible effect to kidneys from use of vitamin and herbal supplements. Another factor for deterioration of my kidney function could be lack of exercise due to Covid lockdown. I haven’t been out for a walk for 3 months as I was shielding and didn’t do any exercise at home as my exercise bike broke! Not sure if that impacts on kidneys.

[HealthBuddyMelissa in reply to Raj363]

Exercise is very important to overall health, and while I can not say for sure how it effects the kidneys directly, I know I feal better when I exercise. I don't see any reason why you can't walk outdoors as long as you don't get close to others. I would bring a face mask just in case you do encounter others where you can not socially distance. I love to walk outdoors.

[Raj363 in reply to HealthBuddyMelissa]

I have started walking now and do feel much better. Whether it translates to improved kidney function i am not sure but will just have to wait until the next blood test. I am trying to ensure my blood sugar and blood pressure are well controlled. I also stay hydrated and have cut down on salt. Fingers crossed. Thanks for your advice.

[HealthBuddyMelissa]

Sounds like you are off to a good start. Keep us posted.

[Raj363]

My next renal appointment is in two weeks so will have a blood test before then. I will keep you posted.

Thanks Melissa.

[Raj363]

I have had another blood test result which shows my Egfr is still at 17. It was slightly down from 19. I stopped taking some supplements and have started walking now that the rate of infection for Covid 19 has gone down. Not sure how long it will take to have an effect (if any) on my kidney function. I have re-started the supplements : vit b complex, vit c, vit d, magnesium and turmeric so will discuss results with the renal consultant tomorrow. Still a bit confused about eating protein - should I just have plant based protein or can I have cheese and eggs? Also, always been told to eat nuts but with phosphorous level being slightly high should I just cut down or avoid them completely. Also fruits - I stopped eating bananas due to potassium level going up to 6.1. Don’t eat plums or oranges and have cut down on potatoes. I really do find diet restrictions very difficult as I have been a veggie all my life. Good to have advice from seasoned kidney experts.

[JackBurton]

if you take a statin you might want to do some reading about COQ10 supplement. i give it to my mom. seems to be safe enough

[Raj363]

Thanks Jack. I have read of benefits of taking CoQ10 supplements for cardiac health but have never taken these. As I dont eat meat or fish, it might be beneficial for general health to start taking these. Thanks again.