Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?

Posted by pmsfarmer @pmsfarmer, May 21, 2019

My Dr. sort of blew this off, but I am concerned about living awhile past 69, my current age. Any suggestions appreciated. He didn't feel a referral to a nephrologist was necessary.

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@petuniamom567

Has anyone received any instructions about getting the booster shot if you have kidney disease. I haven't. Have just read two articles, one in NY Times that claims patients with kidney disease don't do very well with Covid which stresses the kidneys. The function, the article says, drops enormously. Neither my nephrologist nor primary care doctor has mentioned this. I think this is a vital fact for all kidney challenged patients to know. Must we continue to take care of ourselves. Petunia's Mother

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@petuniamom567 Perhaps coming right out and asking your nephrologist what his/her thoughts are on the booster shot, would make thing clearer to you. Anyone with a chronic disease is at a disadvantage if they contract COVID, not just those of us with kidney problems! You are absolutely right, we need to advocate for ourselves, and do what we feel is best for our situation.

I received my third dose of Pfizer vaccine on 19 August. Did not question my nephrologist, but did clear it with my oncologist!
Ginger

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@gingerw

@petuniamom567 Perhaps coming right out and asking your nephrologist what his/her thoughts are on the booster shot, would make thing clearer to you. Anyone with a chronic disease is at a disadvantage if they contract COVID, not just those of us with kidney problems! You are absolutely right, we need to advocate for ourselves, and do what we feel is best for our situation.

I received my third dose of Pfizer vaccine on 19 August. Did not question my nephrologist, but did clear it with my oncologist!
Ginger

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Yes, I did ask just to ensure it was the right thing and get it done. My hematologist also agreed to get the booster. Good luck!

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Hi, me too. Stage 3a. My primary care doctor didn't mention that my kidney function was declining until I noticed my GFR was not inthe normal range? i wonder why?

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@csage1010

Hi, me too. Stage 3a. My primary care doctor didn't mention that my kidney function was declining until I noticed my GFR was not inthe normal range? i wonder why?

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@csage1010 Welcome to Mayo Clinic Connect! We are an online forum of fellow patients or family members or caregivers, who share our own experiences with others.

As you found out, so many have been in the same situation. Kidney disease is often a quiet disease, sneaking up on you quietly until you need to really take action. That said, watching the trend of your lab reports is important, no matter what disorder you may be going through. Several people here, including me, will tell you their dr did not feel it is important to address declining kidney function.

I beg to differ with them! Now is the time to look into renal friendly foods, not stress so much, get good healthy exercise, get and keep your blood pressure to a healthy level. Ask your primary dr for a referral to a nephrologist for care of your kidney disease. By the way, do you know the cause of your declining function? It might be due to a hereditary factor like polycystic kidneys, or lifestyle [long term side effects of certain medications or drugs], or diabetes or high blood pressure. Knowing the root cause of your kidney disease, will help you make choices now and in to the future.

@kamama94 has a food guide for kidney patients: https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/?pg=1#chv4-comment-stream-header Go to Aug 2020 for her posts and links

Also, at the American Kidney Fund website, there is a great section for recipes and foods: https://kitchen.kidneyfund.org/?gclid=CjwKCAjwp_GJBhBmEiwALWBQkywGG04cnvYu_lZEzmW-vgZ15nyvNUFAxzwygy6Uqdg72YOpJAS3tBoCo7MQAvD_BwE

Good for you for looking in to this, and I welcome question! I myself am stage 4, and campaigning to stay off dialysis.
Ginger

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@gingerw

@csage1010 Welcome to Mayo Clinic Connect! We are an online forum of fellow patients or family members or caregivers, who share our own experiences with others.

As you found out, so many have been in the same situation. Kidney disease is often a quiet disease, sneaking up on you quietly until you need to really take action. That said, watching the trend of your lab reports is important, no matter what disorder you may be going through. Several people here, including me, will tell you their dr did not feel it is important to address declining kidney function.

I beg to differ with them! Now is the time to look into renal friendly foods, not stress so much, get good healthy exercise, get and keep your blood pressure to a healthy level. Ask your primary dr for a referral to a nephrologist for care of your kidney disease. By the way, do you know the cause of your declining function? It might be due to a hereditary factor like polycystic kidneys, or lifestyle [long term side effects of certain medications or drugs], or diabetes or high blood pressure. Knowing the root cause of your kidney disease, will help you make choices now and in to the future.

@kamama94 has a food guide for kidney patients: https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/?pg=1#chv4-comment-stream-header Go to Aug 2020 for her posts and links

Also, at the American Kidney Fund website, there is a great section for recipes and foods: https://kitchen.kidneyfund.org/?gclid=CjwKCAjwp_GJBhBmEiwALWBQkywGG04cnvYu_lZEzmW-vgZ15nyvNUFAxzwygy6Uqdg72YOpJAS3tBoCo7MQAvD_BwE

Good for you for looking in to this, and I welcome question! I myself am stage 4, and campaigning to stay off dialysis.
Ginger

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I think it was HTN, although I am medicated, and pre-diabetes. I have trouble exercising due to bad knees and hips. Also, lots of NSAIDS in the past (no more) for fibromyalgia and osteoarthritis. My blood pressure meds are being manipulated to get the right dose.

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Don't understand why I wasn't told to see nephrologist until stage 3. Always read my test reports carefully. Suddenly, one of my physicians suggested a visit to a kidney specialist. Why wait? Why not tell patient to see nephrologist immediately so that stages of disease and appropriate treatment, if there is one, can be performed. Also,
nephrologists should work with nutritionists. Most don't and that leaves you on your own. When doctors get interested in care is when you near need for dialysis. That's not fair. Great strides have been made when it comes to transplants, but the object is to avoid one. Think we need some creative thinking which should be helped by cyber
scientists creative doctors.Good luck and may your progress be slow.

REPLY
@gingerw

@csage1010 Welcome to Mayo Clinic Connect! We are an online forum of fellow patients or family members or caregivers, who share our own experiences with others.

As you found out, so many have been in the same situation. Kidney disease is often a quiet disease, sneaking up on you quietly until you need to really take action. That said, watching the trend of your lab reports is important, no matter what disorder you may be going through. Several people here, including me, will tell you their dr did not feel it is important to address declining kidney function.

I beg to differ with them! Now is the time to look into renal friendly foods, not stress so much, get good healthy exercise, get and keep your blood pressure to a healthy level. Ask your primary dr for a referral to a nephrologist for care of your kidney disease. By the way, do you know the cause of your declining function? It might be due to a hereditary factor like polycystic kidneys, or lifestyle [long term side effects of certain medications or drugs], or diabetes or high blood pressure. Knowing the root cause of your kidney disease, will help you make choices now and in to the future.

@kamama94 has a food guide for kidney patients: https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/?pg=1#chv4-comment-stream-header Go to Aug 2020 for her posts and links

Also, at the American Kidney Fund website, there is a great section for recipes and foods: https://kitchen.kidneyfund.org/?gclid=CjwKCAjwp_GJBhBmEiwALWBQkywGG04cnvYu_lZEzmW-vgZ15nyvNUFAxzwygy6Uqdg72YOpJAS3tBoCo7MQAvD_BwE

Good for you for looking in to this, and I welcome question! I myself am stage 4, and campaigning to stay off dialysis.
Ginger

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@gingerw Keep campaigning to stay off dialysis! Me, too. Good days and days I don't feel up to par but ok iin general here. Thanks for mentioning my work, especially since that presents me with the opportunity to shout TAKE VALUES IN MY RECIPES WITH A VEY SMALL AMOUNT OF SALT. Ingredients and amounts and nutritional values of products, even fresh and whole foods, often change. READ LABELS! EVERY TIME!.

If you are a homebound, online grocery shopper dependent on home delivery like me, go to the trouble of contacting the provider or store by phone or email and ask that a current nutrition label for the item you're considering purchasing be read or sent to you since you can't physically hold an online icon to read the nutrition info.

I have to hand it to my own local grocer for putting up with my incessant requests for ingredients and nutritional values of item after item. On the other hand, pun intended, they can be glad I spend most of my grocery allowance there. So no matter if store personnel tire of my asking what's in something and how much is in something, it's still a win-win for both of us.

Or else I'd pick up my toys -er, money - and go home -er, to a different store - LOL.

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@kamama94

@gingerw Keep campaigning to stay off dialysis! Me, too. Good days and days I don't feel up to par but ok iin general here. Thanks for mentioning my work, especially since that presents me with the opportunity to shout TAKE VALUES IN MY RECIPES WITH A VEY SMALL AMOUNT OF SALT. Ingredients and amounts and nutritional values of products, even fresh and whole foods, often change. READ LABELS! EVERY TIME!.

If you are a homebound, online grocery shopper dependent on home delivery like me, go to the trouble of contacting the provider or store by phone or email and ask that a current nutrition label for the item you're considering purchasing be read or sent to you since you can't physically hold an online icon to read the nutrition info.

I have to hand it to my own local grocer for putting up with my incessant requests for ingredients and nutritional values of item after item. On the other hand, pun intended, they can be glad I spend most of my grocery allowance there. So no matter if store personnel tire of my asking what's in something and how much is in something, it's still a win-win for both of us.

Or else I'd pick up my toys -er, money - and go home -er, to a different store - LOL.

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@kamama94 Yeppers, working hard to stay off dialysis. My oncologist is helping a lot, by tailoring my chemo to [hopefully] not have an accumulative effect on my kidneys. Even the gabapentin he prescribed, at 300mg max per day [the dialysis patient protocol] I take only 200mg daily. We tread very carefully. Everything is so connected in our bodies and all the systems that run through it!
Ginger

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@petuniamom567

Don't understand why I wasn't told to see nephrologist until stage 3. Always read my test reports carefully. Suddenly, one of my physicians suggested a visit to a kidney specialist. Why wait? Why not tell patient to see nephrologist immediately so that stages of disease and appropriate treatment, if there is one, can be performed. Also,
nephrologists should work with nutritionists. Most don't and that leaves you on your own. When doctors get interested in care is when you near need for dialysis. That's not fair. Great strides have been made when it comes to transplants, but the object is to avoid one. Think we need some creative thinking which should be helped by cyber
scientists creative doctors.Good luck and may your progress be slow.

Jump to this post

@petuniamom567 Frankly, most internists/general doctors are not well-versed on kidney disease. In my humble opinion, there are way too many specialized systems within the body for one dr to be up-to-date on them all! While I agree they should be referring a patient earlier than they do, they don't. A patient must advocate for themselves and their health. A good nephrologist will refer you to a renal dietician, not a regular nutritionist, as our needs are very different! Unfortunately, again, these renal dieticians are not easy to find. We end up going to websites like davita https://www.davita.com/diet-nutrition or American Kidney Foundation https://kitchen.kidneyfund.org/ to find what we need to do with our particular situation. In reality, it helps us feel more in control of our own case. And remember, eating well, plus good exercise and reduced stress levels all will help us in slowing progress of our kidney disease.

It is important to know that a transplant is a treatment for kidney disease, not a resolution to it.
Ginger

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Hello,
My primary doctor (whom I loved but she has left the practice) didn't tell me I had CKD3. I saw it on my summary page of my appointment. I was shocked to see that I Stage 3 CKD and I was disappointed that I was not told about it. I have had it, by my lab reports, from 2019 which means I really didn't take it too seriously since she had not. I have since learned a lot about it, what the stages mean, what foods to allow and which to avoid. Watching my intake of potassium (which runs low so I take supplements), phosphorous, magnesium, protein, salt and so much more. I have a wonderful book which tells everything that you need to know to slow down the progression. The author has CKD also. I hope that I am allowed to give the name of the book so here goes: Stopping Kidney Disease Basics, by Lee Hull. It is an amazing book and I would highly recommend it. I have not as yet seen a Nephrologist but I check my levels every six months. My last number was GFR 49 which came up by 5 points. I'm still very concerned about it and wish I could have my blood work done more frequently but I don't think it would be allowed by my insurance. I will stick to what I am doing and just hope that my levels stay steady. If then go down by too much I will definitely see a specialist. Hope this is helpful to anyone who reads this comment. Good luck to all of you!

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