New to disease. Food questions.

[Grammyglo]

I have just found out that my husband's eGFR is 29. It was 59 last year. They say he is in Stage 4 kidney disease and he'll have to go on dialysis at Stage 5. I'm going to have to change how he eats...very little protein or fruits and vegetables with low potassium. I feel like I need a degree in food science to learn everything. He has no symptoms. We won't get a referral to a specialist for 3-4 weeks. He has low blood pressure. Is salt OK? I heard ice cream should be avoided? Why?

Any help would be appreciated. Oh, and he has dementia so can't remember what I tell him. He's 82. Otherwise in great health. It's a shock to us.

[Love101cats]

I really am in empathy though my situation is different. My husband had dementia and other chronic diseases and I have stage 4 kidney disease and heart failure. So having coped with so many diets you would think I could cope easily with the kidney one. NO, it is so tough. Im on my own with only my brain capacity and you are too really. The diet goes against everything I have learned about and a lot of things I enjoy. Its fiddly, hard to comprehend but it works! When I spend time planning and stick to it my gfr goes up. When I dont it goes down and I dont feel well. I think you need some support. I have a carer just 4.5 hours a week and one of her jobs is to help me plan food for the coming week, get things on my shopping list and even prep some things. If you have support for your husband maybe they can help. If not maybe a friend or relative. It would be one thing off your shoulders if you are able to get help and reduce the stress of worrying about his food intake.

[orangecity41 NKF Ambassador]

I am 79 year old male, and was diagnosed 4+ years ago with CKD level 3b. The Doctor prescribed a diet based on other bloodwork, ( sodium, potassium, phosphorus and protein). Inquire of the Doctor about an appropriate diet. The diet has helped slow down the progression. I also attended a Davita class on CKD , which helped me.

[Ragbaby88 in reply to orangecity41]

Thank you for sharing your story with us. I was diagnosed as stage 3b as well. Waiting for my renal appointment. I have been very nervous over diet as I’m T2D with high blood pressure. The two diets clash!!

[orangecity41 NKF Ambassador in reply to Ragbaby88]

Your Doctor should take that in consideration on your prescribed a diet. I am pre Diabetic and had to modify the amount of fruit on the diet. Keep us posted.

[KatyBGood]

Two excellent online resources are davita.com and kidneyschool.com. They won't be able to help you much with actual diet guidelines, as these tend to be quite individualized. One thing is for certain, though, which is to keep daily sodium intake under 2000mg. This in itself is challenging because absolutely everything contains more sodium than you might think. Read labels carefully for all foods you buy.

[Darlenia]

You have an interesting situation! I find it somewhat unusual that your husband has low blood pressure. Generally speaking, as kidneys fail, blood pressure begins to soar. I recommend a consultation with a dietician as to what you should do as the "renal diet" lowers electrolytes (sodium, magnesium, chloride, potassium, etc.). Do you know why your husband has low blood pressure? Occasionally, lowering sodium levels will cause blood pressure to plummet further, leading to serious outcomes. If you get the green light to have your husband go on the "renal diet", then make sure you also take care of yourself. I went on the "renal diet" along with husband who is now on dialysis. The diet is fine for him, but not for me. My electrolytes went below normal (sodium, chloride). My blood pressure dropped, my heart went into arrhythmia, and I was nearly hospitalized. So I would recommend doing nothing at all right now. Instead, I would simply seek professional guidance - what is right for your hubby and what is right for you. Blessings on being a caregiver. It's difficult and it's lonely, yet there are some great quality moments. Please reach out anytime.

[Jayhawker]

Welcome Grammyglo🐶

I am a person who has had difficulty with low BP as well as sudden plummeting BP as my renal function has deteriorated. In my case, both were related to chronic dehydration. It took a few years to identify the correct fluid intake for me. Now that I adhere to that on a daily basis, my BP is typically in the normal range (110-115 over 68/74). This is with no BP medication. In fact, I only take sodium bicarbonate and Auryxia for my CKD. One is to treat anemia. The other lowers my acid levels. I’m in stage V CKD and have been from the first week of January 2017, nearly 4 years. I’m not yet on dialysis although it may not be long now.

Jayhawker

[HSV21]

I am diabetic and Stage 4 CKD. I agree with others to have you get a renal dietician as soon as possible. Even if it is teledoc service. Here in Arkansas, BCBS accepts using whomever I want via teleservices as long as Covid is here. I found a really good one who happens to take my insurance and is in Arkansas. She has me on a whole foods plant based diet with 8 oz. total of animal protein or 3 oz per meal. I find that helps with hunger pains and loss of any bread. Until phosphorus levels go down, can have only 1/3 c. starch such as wild or white rice, 1/2 c. corn or green peas - no legumes, potatoes etc. at this point, but can have it when bloodwork is in order. Main thing is, a renal dietician will look at all of your numbers and come up with a diet based on them, not just a generic "Renal Diet". And I do try to drink 60 -100 oz of plain water a day. This is very hard, all of it, but I am giving it my best shot because I want to be around a few years to play with my first, soon-to-be grandbaby girl. My nephro said if I can lose 30-40 lbs all of this will take care of itself. I am on a new drug, Ozempic for diabetes and weight loss. My BG has already come down to mostly normal range, and I pray the weight will come off too. Do lean on your family and friends to get you through this - you have a huge burden to carry - I will pray for you and hyour husband.