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Should I go to Mayo? Chronic Kidney Disease

Posted by gladiator14 @gladiator14, Aug 26, 2020

I am 67 years old and recently diagnosed as Stage 3B. My Internist/nephrologist in Iowa always told me my GFR and Creatinine abnormal chemistries were "just my normal". I drove to Mayo (5 hours) for a surgical consult for a GI issue back in March 2020. After my visit my internist asked me what Mayo said about my kidneys. I was in shock that he was now asking me this as I had been his patient for the entire 15 years of my altered GFR and Creatinine. Getting nervous I immediately set an appointment with a nephrologist at the University of Iowa. I also found another internist. The U of I nephrologist told me the news of Stage 3B and ordered an ultrasound which found a sizable cyst on one side and a good size stone in the other. I was basically told we will watch things and nothing else. No information about diet or anything else was provided. I have found these different web sites and have pieced together that I should be limiting my sodium to <1500mg/day and protein to <65g/day based on my weight. I have I had a blood test a month ago and my eGFR was 38 and creatinine was 1.79. I had another blood test Monday which showed eGFR 37 and creatinine 1.83. I have been following the diet for 2 weeks. I am more than disappointed. A month ago based on my labs and a 24 hour urine I was put on 10MEQ potassium citrate, Atorvastatin. I was previously on Pantoprazole for my GI issues and Amlodipine for hypertension. My question is does anyone feel it would benefit me to come to Mayo for another opinion. Any help is appreciated.

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2011panc | @2011panc | Aug 28, 2020
In reply to @rosemarya "@gladiator14 - Did your nephrologist at Univ of Iowa tell you anything about the drugs that..." + (show)
@rosemarya

@gladiator14 - Did your nephrologist at Univ of Iowa tell you anything about the drugs that he wants you to take? I hope you have a follow-up appointment soon so you can get some answers like: What are they supposed to do? How long until you see results? What kind of diet, as well as how you will know whether it is working to your advantage? I believe that I would get him to answer those questions for you. Also a phone call to Mayo is another possibility to learn whether an appointment would be an option.
I want to introduce some members who have experience with Mayo and/or CKD to share their insights and experience - @cmael @ca426 @marvinjsturing @jolinda @2011panc @cehunt57 - What do you have to say to @gladiator14about his situation?

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@gladiator14 Is there any benefit from you returning to Mayo for your renal issues? Definitely. You will have access to specialists for your kidneys, blood pressure, medications, diet, nutrition, heart and digestive system. All of these systems interact and need to be followed and understood to the best of your ability. Best of all, Mayo will provide you with a plan of care, testing and results, and ANSWERS! Please go for your best possible outcome and peace of mind. You have started a difficult journey that will be much easier to traverse using the assistance available at Mayo. Please go.j

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gladiator14 | @gladiator14 | Aug 28, 2020
In reply to @lagrange5 "I was once told by a nurse practitioner that you if you are experiencing a medical..." + (show)
@lagrange5

I was once told by a nurse practitioner that you if you are experiencing a medical issue that is affecting your life, you should see the right specialist. For me that has been Mayo Clinic. After going through 4 local urologists, I travelled to Mayo where I saw the urologist who performed surgery and who I now see annually for almost 10 years. My local nephrologist could only scratch his head at my problem. When I went to Mayo I saw a nephrologist, hypertension nurse, renal nurse educator, and dietitian, all of whom got to the cause of my problem, taught me how to manage it, and have continuously given me dedicated professional treatment. I can’t say enough about the Mayo Clinic.

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Thank you.

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gladiator14 | @gladiator14 | Aug 28, 2020
In reply to @jolinda "@gladiator14 I sense from your question that you are unsettled about the information and care you..." + (show)
@jolinda

@gladiator14 I sense from your question that you are unsettled about the information and care you have received thus far. I ABSOLUTELY think you would benefit from a second, third, or forth opinion! I joke with a fellow transplant patient that most people wouldn't remodel a bathroom without talking to three contractors but they trust their life to the first doctor they meet. Doctors (like bathroom contractors) exist in good and bad versions everywhere you go the trick is putting in the hard work to find them. I see doctors both at Mayo and outside of Mayo and I have them all exchange records electronically. I choose my physicians based on a variety of factors that are personally important to me not what institution they affiliated with or the state they live in. In my experience I have encountered a greater concentration of brilliant providers at Mayo than anywhere else. So if you are looking for a shortcut in finding a good doctor the odds are stacked in your favor by choosing Mayo. Best of luck.

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I appreciate your response.

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gladiator14 | @gladiator14 | Aug 28, 2020
In reply to @cmael "I can’t say enough good things about Mayo. I had a kidney transplant two years ago..." + (show)
@cmael

I can’t say enough good things about Mayo. I had a kidney transplant two years ago in April. My daughter was the donor. My GFR was about 13 at the time. I was 75 and thought my age may be a factor. They weren’t concerned as long as my several tests... stress echocardiogram, aortic artery ultrasound, blood work and more were not showing any problems. Everything went good with the surgery after a bit of an adjustment in my immunosuppressants. The nurses on the transplant floor are the nicest people we’ve ever met. My daughter had a great experience, too. Mayo is so efficient and the communication between departments is awesome and I believe they do a good job at keeping the costs down.

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I am glad you and your daughter are doing well. Thank you.

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