In need of help!: My mother has Chronic... - Kidney Disease

Kidney Disease
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In need of help!

RebelHeart001
RebelHeart001

My mother has Chronic Kidney Disease. Her kidneys only have 30% function due to damage from a medication she was put on.

Now, she has to go on a low-carb low potassium diet, and we have no access to a dietitian since we're in a rural area! Her new kidney specialist has basically told her to do this without giving her the tools to succeed!

Can anyone give us tips to such a low-carb low-potassium diet? (without Vitamin K since she's also on blood thinners!) There's so much conflicting information on the web, and we really need the help!

Thank you so much!

24 Replies
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orangecity41
orangecity41NKF Ambassador

Perhaps Primary Doctor has resources for an appropriate diet. I was given an appropriate Chronic Kidney Disease diet by my Doctor. I am limited on potassium, phosphorus and sodium. These amounts are based on blood work.

Primary doctor said to check Google. As did Kidney Specialist. We're on our own :(

orangecity41
orangecity41NKF Ambassador
in reply to RebelHeart001

Does any Doctor in your area do Telemedicine. That might be a possibility.

If possible- change doctor.

Being in a rural area can be an issue but there are things you can do. You must have access to a hospital. I'd suggest you contact the hospital and explain the situation. They may have someone on their staff that can help you with a renal diet. I'm going to assume that since you are in a rural area you have only one nephrologist in the area to deal with.

I'm pretty much in the same situation. I also live in a rural area. I have to drive 35 miles, one way, to see any of my physicians. I also have an RD and her office is almost two hours away. My first two visits were in her office. Once we set up the kidney-friendly meal plan I contacted her via e-mail if my numbers warranted. I've done this a couple of times and only a slight change was made and that was temporary.

If you are in the USA, I'd suggest going to the davita.com website. You can register for a free, 90-minute Kidney Smart class held close to you (it may be in a nearby bigger city). You can attend with your mother and get a lot of information and resources to help with an appropriate meal plan. The DaVita website also has recipes that you can look at and by making substitutions you can reduce the carbs and potassium as needed. None of the recipes should be taken at face value. Adjust them according to your labs for the best results. You will learn more about this at the Kidney Smart class.

Since a medication was responsible for the CKD, you might have her go to the drugs.com website. She can sign up for a free account. By listing all of her meds she'll be kept updated on interactions and find out which meds are harmful to a patient with CKD. She can also sign up for free newsletters that will let her know about medicine recalls, alerts and other information she'll need to know.

When I attended the class I was helped with all of the things I've mentioned and was even given information on an RD and a different nephrologist. The group the nephrologist was part of only came to the town near me two days a week. That was two years ago and since then, they've increased the days the doctor is available to three and in 2020 they'll move it to four days.

Good luck with this. It can be daunting but there is a lot of support available here in this community.

The hospital here is kinda useless. They told us to talk to our Primary Doctor, who told us to go on Google. The kidney specialist is an hour away, and while the Primary Doctor is closer, he's not the best. He pretty much only does medication renewals and doesn't do any follow ups.

That's why I posted here. I was really hoping someone could help me figure out the jumble of information of what's best to eat on a low-carb, low-potassium, diet. Just a few tips would be great.

We're in Canada, btw. So while the Davita website is useful for information, I can't really sign up for anything. There's just so much conflicting information, we're lost and a little panicky.

You might want to go to kidneyschool.org

There you'll find a series of educational modules that will explain CKD and some help on a meal plan. How far are you from a decent hospital? It might be worth a trip if you can set something up on the phone prior to visiting. If your situation is that dire, you might be able to use a regular dietitian or nutritionist and explain the specifics of what the doctor prescribed. It might be enough to get you started. Before you make the call, have in front of you as many of your mother's last years' worth of labs to go over with whoever you speak with. They'll need specific information to help you get started. What they'll ask about is her GFR, creatinine, BUN, Vitamin D, sodium, potassium, phosphorus, protein, and calcium. A complete lab value of all tests will give them an overall picture.

You didn't mention what medication for what illness she was taking. Have that information ready for them also, before you make the call.

To help you understand the labs better let me suggest using labtestsonline.org That site will explain the tests ordered/taken and give you some idea what the doctors are looking for and give you a basic value for each test.

We're almost an hour from a decent hospital. The thing is, the other hospitals tell us to go to our 'regional' hospital, which isn't very good - the help there is very limited.

I'll try the site you suggested, thank you very much!

I am so sorry for all these troubles. Mr. Kidney gave excellent advise to you as he always does. Until you know what to do why don't you stick to Whole Foods like fresh fruits and veggies and healthy proteins such as fish; chicken. I am new to this illness and no expert but Until you get the help you need just do your research on the internet and eat the whole foods. In my opinion a lot of it is kind of common sense. I feel bad you have to travel so far to get the resources you need. I have them all right here in my backyard and I am still struggling. Best luck to you and your family. I hope things work out for you guys.

My primary doctor doesn't want to do anything to mess up my kidneys and my kidney doctor tells me to talk to my primary doctor about things not related to kidneys. Of course neither one will talk to the other. It is so frustrating especially since it is because of doctors that I am in this situation. For years being on blood pressure medicine without being counseled and now stage 5 kidney disease in two years time. You really got to take charge and not depend on doctors who are just "practicing" medicine.

orangecity41
orangecity41NKF Ambassador

Here is a link for Kidney Association in Canada. Maybe they can assist you. They have Services and Support. kidney.ca/kidney-disease

Thank you! I've already sent them an email

KristiS_NKF
KristiS_NKFAdministrator

Hi RebelHeart,

Our Patient Information Help Line, NKF Cares, offers support for people affected by kidney disease, organ donation or transplantation. It's designed for patients, family members and care partners. You can speak with a trained specialist who will answer your questions and listen to your concerns. They can also mail you some educational materials, or direct you to some other resources in your area.

Giving them a call would be a great place to start! 1.855.NKF.CARES (1.855.653.2273)

Best,

kristi

Is that available for Canadians too??

KristiS_NKF
KristiS_NKFAdministrator

Yes, you can definitely call in and instead of mailings they can direct you to resources on the web.

Thank you so much!

There is a website called teladietitian.com You can sign up with one of their dietitians to get a conference call. They have a lot of dietitians to chose from and it's about $50.

Good Luck

Thanks! I'll look into it!

Thank you!

First thing First -- Please list all medicines your mother took, with name, dosage and when she started. When did you notice the effect ? This will also help other members to avoid certain medicines.

Are you in USA ? or other country -

The medication that destroyed her kidneys was Lithium. She was put on it for anxiety. I believe she was on it for 5+ years, at a dose of 300mg a day. It gave her tremors, hand shakes, weakness, hair loss, vision changes, weakness, and much more. Turns out that her doctor should have been following her via bloodwork, but he didn't. It came to a head two years ago when she went on a blood pressure medication that interacted with the lithium and her warfarin and ended her in the hospital - it nearly killed her. The hospital stopped the lithium cold turkey right then and there. And then we discovered what it had done to her kidneys.

We're in Canada, in a semi-rural community in Quebec (with a horrible hospital), and while changing her doctors would be wonderful, it's not an option. There just AREN'T any other doctors available, especially the kidney specialist. We're stuck.

sorry to know that - if you have money - go to California - ask some one about EDTA - detox treatment - for entire body --

yes- should ahve monitored every six months or more often - with blood work and xrays - Lithium is highly toxic.

Yeah, no money. So we're kinda stuck. Hoping to learn as much as we can by ourselves online so we have some sort of clue what to do with this diet her specialist wants her to go one.

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