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.

I have a wonderful Nephrologist and he’s not with The Mayo Clinic. The only reason I didn’t seek out a doctor at The Mayo is bcuz Dr Robert Cohen once saved my life and the Clinic embeds their doctors in the local hospitals. That’s where Dr Cohen saw me when I was brought in unresponsive in July 2009. He saw my family coming in the ER, the paramedics frantically working on me and Dr Cohen said she’s my patient, bring her to me. He saved my life!!! Dr Robert Cohen and he’s with The Southwest Kidney Institute and they’re in every part of the valley.

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@pmsfarmer, I've read and my docs also have told me you can live quite awhile in stage 3. They also told me that as we near 70 our kidney function naturally declines as part of aging and what would be abnormal for a young person isn't necessarily bad for someone 70+. When I was first diagnosed I was in stage 4 but moved up to stage three with proper diet and good medical management. Occasionally I drop back to stage 4 temporarily, depending mostly on what's going on with meds for other health conditions, but for the most part have been pretty stable for two years. Two different nephrologists have told me they don't usually start considering dialysis until a patient's filtration rate drops below 20 and stays there. As long as your primary care doctor monitors your lab work to check your kidney function, he may feel you don't need to go to a specialist yet. However, as patients, we are ALWAYS entitled to a second opinion. Or a third. Etc. Most docs don't object if you ask for a referral to a specialist "just" for a 2nd opinion. Quite frankly, although my own neph is considered to be one of the best, I have much better rapport with my very knowledgeable primary and would just as soon he managed my CKD but he feels a neph is more appropriate so I'm doing as he asks. Hope this helps and welcome to this discussion! There's good info here and lots of support.

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@laylabug

I have a wonderful Nephrologist and he’s not with The Mayo Clinic. The only reason I didn’t seek out a doctor at The Mayo is bcuz Dr Robert Cohen once saved my life and the Clinic embeds their doctors in the local hospitals. That’s where Dr Cohen saw me when I was brought in unresponsive in July 2009. He saw my family coming in the ER, the paramedics frantically working on me and Dr Cohen said she’s my patient, bring her to me. He saved my life!!! Dr Robert Cohen and he’s with The Southwest Kidney Institute and they’re in every part of the valley.

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@laylabug, welcome to this discussion. Sounds like your neph is quite a guy. Glad he saved your life.

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@pmsfarmer Welcome to Mayo Clinic Connect. We're glad you're here! Great to hear you are looking after yourself, and willing to be proactive in your own health. I can only tell you my story; I'm not a medical professional. I was diagnosed with kidney disease approximately 15 years ago, and have maintained a stage 3 for the last 7 years by virtue of lifestyle and diet. The cause of my kidney disease is a very rare autoimmune condition. It would be good if your doctor can tell you the cause of your kidney disease; the two main causes are high blood pressure and diabetes. As @kamama94 mentioned, you can learn to live with your kidney disease and to slow the progression of it. I would certainly go for a second opinion with a nephrologist, so you can get all of the information possible there is a lot here on the Mayo Clinic website. Also go to http://www.rsnhope.org for a lot of information. The founder of that organization is a four-time kidney transplant recipient who has dealt with kidney disease since the age of three. I am involved with her patient lead support groups. Please come back and let us know how you are doing, and how we can help you.
Ginger

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So happy to report that I learned more in my first visit with the new nephrologist than in all combined other visits with the original one!!! Yes!

Although I'd earlier completed a lengthy "new patient" packet and because he wasn't in my network database, I also took previous CKD lab reports; a chart of impt. ckd values over time, a brief dated health history and my written questions: 1. What do I need to most focus on? 2. Am I currently taking meds that might need to be changed or eliminated because of harm to kidney function? 3. What can I do to best help my kidneys until our next visit?

He reviewed what I'd brought along, spent time explaining more about kidney function and answering my questions. I felt as though I'd reached Mecca. He listened and then congratulated me on the steps I'd taken in seeing a dietitian and on following meal guidelines, along with more walks, which had consistently improved both my A1c and ckd scores.

For a person who is very reluctant to make doctor changes, I was nearly giddy with relief at the difference that visit with him made. Now I'm looking forward to my 1st endocrinologist visit in April for help with osteoporosis and possible help with too much weight loss.

I wish I'd made a specialist change sooner but encourage others who are feeling that they might not have the best fit with a doctor for a particular chronic health problem to pay attention to your "gut feeling" and take the risk.

I celebrated by heading to my favorite restaurant "curb side" for a mushroom burger, slice of cake and ice cream!! What any reasonable mortal would do, right????? Best to all!

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@fiesty76

So happy to report that I learned more in my first visit with the new nephrologist than in all combined other visits with the original one!!! Yes!

Although I'd earlier completed a lengthy "new patient" packet and because he wasn't in my network database, I also took previous CKD lab reports; a chart of impt. ckd values over time, a brief dated health history and my written questions: 1. What do I need to most focus on? 2. Am I currently taking meds that might need to be changed or eliminated because of harm to kidney function? 3. What can I do to best help my kidneys until our next visit?

He reviewed what I'd brought along, spent time explaining more about kidney function and answering my questions. I felt as though I'd reached Mecca. He listened and then congratulated me on the steps I'd taken in seeing a dietitian and on following meal guidelines, along with more walks, which had consistently improved both my A1c and ckd scores.

For a person who is very reluctant to make doctor changes, I was nearly giddy with relief at the difference that visit with him made. Now I'm looking forward to my 1st endocrinologist visit in April for help with osteoporosis and possible help with too much weight loss.

I wish I'd made a specialist change sooner but encourage others who are feeling that they might not have the best fit with a doctor for a particular chronic health problem to pay attention to your "gut feeling" and take the risk.

I celebrated by heading to my favorite restaurant "curb side" for a mushroom burger, slice of cake and ice cream!! What any reasonable mortal would do, right????? Best to all!

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@fiesty76, Yay, you! Def a cake and ice cream occasion!

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We have a great family doctor. However, he doesn't seem to set up follow-up appointments and hasn't scheduled urine test for over 1 1/2 years (another doctor did that), nor a blood test since last November and cholestrol test was done a year ago when he put my 88 year old husband on medication for high cholestrol (presumably due to CKD stage 3). Bill is suffering from extreme fatigue and cronic pain in the back and we are considering calling to see if there is anything that can help. Don't know if I should also ask if he be given the blood/urine tests before asking for an appointment. Bill keeps wanting to order energy and pain OTC meds he sees advertised on TV, which I think is a very bad idea. Bill is also getting very low BP readings when he takes a shower (lukewarm, using a hand-held and sitting on a bench). It goes back to normal in an hour or so (on BP medication for decades).

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I turned 69 yesterday & also was just diagnosed with Stage 3. Have Type 2 diabetes. My GP didn't suggest any kind of special diet other than keeping my A1c low nor did he suggest I see a nephrologist. Nevertheless, I've researched a lot about Stage 3 and have started on a low sodium, lower protein diet than I've been eating.

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@billchitwood

We have a great family doctor. However, he doesn't seem to set up follow-up appointments and hasn't scheduled urine test for over 1 1/2 years (another doctor did that), nor a blood test since last November and cholestrol test was done a year ago when he put my 88 year old husband on medication for high cholestrol (presumably due to CKD stage 3). Bill is suffering from extreme fatigue and cronic pain in the back and we are considering calling to see if there is anything that can help. Don't know if I should also ask if he be given the blood/urine tests before asking for an appointment. Bill keeps wanting to order energy and pain OTC meds he sees advertised on TV, which I think is a very bad idea. Bill is also getting very low BP readings when he takes a shower (lukewarm, using a hand-held and sitting on a bench). It goes back to normal in an hour or so (on BP medication for decades).

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@billchitwood, I just read some of your posts, and I am sorry that you are caught between getting care for your husband and his resistance to accepting medical care. The fatigue, the swelling, the drop in blood pressure and the pain, and the falls are symptoms that, in my opinion, would be best diagnosed and treated at an appointment rather than a phone call. I think it would be appropriate for you to ask whether he needs to get a blood test or urine sample ahead of the appointment, but my experience is that the labs are going to be ordered after the doctor decides what labs to order.

It is already Friday afternoon, but do you think you could call on Monday to make an appointment? Tell them what he is experiencing. Make a list of the prescriptions medicines and all over-the-counter medications that he is taking. And when/if he is taking them.
Do you have means to transport him to the doctors office?

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@hopeinal

I turned 69 yesterday & also was just diagnosed with Stage 3. Have Type 2 diabetes. My GP didn't suggest any kind of special diet other than keeping my A1c low nor did he suggest I see a nephrologist. Nevertheless, I've researched a lot about Stage 3 and have started on a low sodium, lower protein diet than I've been eating.

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@hopeinal Welcome to Mayo Clinic Connect. We are all patients here, sharing our experiences as we journey along our individual medical paths. And, happy birthday, a day late ;))

You're heading in the right direction, starting a low sodium/lower protein diet. There is much to be said about how we can change things in our lives style to help kidney disease! You will see a discussion thread from @kamama who created quite an informative recipe and what-to-eat for kidney disease. There is also the American Kidney Fund americankidney.org for their recipe kitchen on top tool bar, Renal Support Network rsnhope.org, Davita [a dialysis company] davita.com under their "diet and nutrition" on upper tool bar.

I am stage 4 at 22% function, and find diet a challenge, since there are other issues, too. You may very well want to ask for a referral to a nephrologist, to make sure you do all you can for your kidneys. Kidney disease can be a very quiet predator.

How are you feeling with the news of kidney disease?
Ginger

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@rosemarya

@billchitwood, I just read some of your posts, and I am sorry that you are caught between getting care for your husband and his resistance to accepting medical care. The fatigue, the swelling, the drop in blood pressure and the pain, and the falls are symptoms that, in my opinion, would be best diagnosed and treated at an appointment rather than a phone call. I think it would be appropriate for you to ask whether he needs to get a blood test or urine sample ahead of the appointment, but my experience is that the labs are going to be ordered after the doctor decides what labs to order.

It is already Friday afternoon, but do you think you could call on Monday to make an appointment? Tell them what he is experiencing. Make a list of the prescriptions medicines and all over-the-counter medications that he is taking. And when/if he is taking them.
Do you have means to transport him to the doctors office?

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He is still resisting going in to see the doctor – or calling. I'm still driving – we convinced him to give up driving last year, which he was delighted to do. Plus he has only gone out to visit doctor and dentist. And now declining to do that as well. He is quite happy at home and I've managed to keep the pain level down for him (Tyenol, which the doctor said he could take). Most of his symptoms are more of the nitty picky type of thing as far as he is concerned. Feet are almost always elevated so that keeps the swelling down. No pain with the 'red palms'. Even the diarrhea a couple times a week doesn't seem to bother him. Nor the low diastolic blood pressure. So basically he is a happy camper other than he hates taking all the meds he is on presently and doesn't want more – which he is sure the doctor would suggest if he goes in. His choices of foods (mostly sweet) are terrible but I do manage to get a lot of fruit and veggies down him. Kids and I figure at 88 with his health problems he might as well just enjoy things as much as he can. He likes using me as a research assistant so I can answer his questions – which I probably bungle but keeps him happy.

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@gingerw

@hopeinal Welcome to Mayo Clinic Connect. We are all patients here, sharing our experiences as we journey along our individual medical paths. And, happy birthday, a day late ;))

You're heading in the right direction, starting a low sodium/lower protein diet. There is much to be said about how we can change things in our lives style to help kidney disease! You will see a discussion thread from @kamama who created quite an informative recipe and what-to-eat for kidney disease. There is also the American Kidney Fund americankidney.org for their recipe kitchen on top tool bar, Renal Support Network rsnhope.org, Davita [a dialysis company] davita.com under their "diet and nutrition" on upper tool bar.

I am stage 4 at 22% function, and find diet a challenge, since there are other issues, too. You may very well want to ask for a referral to a nephrologist, to make sure you do all you can for your kidneys. Kidney disease can be a very quiet predator.

How are you feeling with the news of kidney disease?
Ginger

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Thank you, Ginger. Well tbh I’m scared but optimistic. I haven’t been sick in years, not even a cold. So overall I think I’m relatively healthy. My doctor thinks that stopping the Lasix I was on for the past couple of years and stopping NSAIDs and other OTCs might bring my GFR back up some. Crossing my fingers. I was a nurse for 40 years so I believe in being proactive about my own care.

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