Stage 3 chronic kidney disease (CKD): What specialists do I see?

@codered032, I have been taking Tacrolimus and Mycophenolate Mofetil (Cellcept) for 12 years as my antirejection medications for liver and kidney transplant. When I look at the long list of the 'serious' side effects it is quite unsettling. However, I am aware of the need for these medications and I have been very fortunate to be at a stable level of dosages without any serious complications. My transplant team requires me to have labs drawn routinely to monitor the trough level that they have decided for me. My team has stressed the benefits vs the risks of any medications. My team also has instructed me that I need to be aware of potential problems and to keep up with my routine health preventive measures and to take the necessary precautions like sun protection.
I did not experience any problems when I was changed from name brand to generic when the generic became available. However, my Transplant team did order extra labs to make sure that my levels were stable. My body has accepted Tacrolimus well and I have not needed to change medications as some patients have had to do.
I get my antirejection medications through the Mayo Clinic Specialty Pharmacy where I transplanted. My transplant team and the pharmacy are both directly involved with these medications. When or if there is a dosage change or a manufacturer change, I am notified.

Are you keeping a list and monitoring when these symptoms occur? Does taking meds with or without food help? Is your doctor checking the level of tacrolimus via routine labs. (When I was at 4-5 weeks, I was having weekly labs drawn) What has your doctor told you about your side effects?

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I'm happy to have found Mayo Clinic Connect. I am stage 3 CKD and see my Nephrologist twice per year who travels to our small town from a larger facility out of state. I have asked many questions regarding my diet and he tells me I can eat anything and only to restrict protein and drink 60 ounces of water daily. I asked how much protein and was told 70 grams per day which seems a lot to me. I have always limited animal protein to 3 ounces per serving before I was diagnosed. I do my research and it looks like 3oz chicken breast for instance has 23g protein. Based on this, although he has said I can eat anything, I have researched and done my best to limit certain foods high in phosphorous and potassium. I have many questions but when I ask, his answers are abrupt and tend to shut me up. I am 79 and walk a mile every day on the track at our health center gym. Nephrologist says lose weight, exercise and check blood pressure, nothing more. I have a fixation plate attaching my left arm to my shoulder after a bad fall in 2016 with 2 surgeries for a 4 part fracture with 3 broken ribs and I am short on one side now and am limited with upper body workouts and balance but again he becomes irritated with explanations. I don't know what I'm doing right or wrong and this is the only game in town so to speak. I have lost weight, but unsure if I'm getting enough of the foods the rest of by body needs and enough calories. Very worried.

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@jackie79 Welcome to Mayo Clinic Connect! I'm glad you found us, and hope we share our experiences here with you! As you have seen, there are some doctors who still think Stage 3 is not a big deal, that no proactive measures need to be taken. When I was there [now I am Stage 5], I started following a renal diet, limiting potassium and phosphorous, monitoring my blood pressure, weight, and stress closely. Doctors told me "no big deal, you don't have to do that" but I thought otherwise.

Here are a few links to good sources for kidney diets and guidelines:
From the National Kidney Foundation https://www.kidney.org/nutrition
From the American Kidney Fund: https://www.kidneyfund.org/kidney-disease/chronic-kidney-disease-ckd/kidney-friendly-diet-for-ckd.html
From Renal Support Network: https://www.rsnhope.org/renal-recipes-kidney-friendly/

I take a multi vitamin each day, and strive for a healthy diet. Okay, sometimes I fudge a bit! I admit it! But for the biggest part, I am careful. As for your nephrologist and his patient approach, you might ask him for resources, let him know he is part of your team. He might be abrupt due to overwork, or the 2x yearly visit? Your questions might be something he isn't wanting to go in to because he hasn't considered them at this stage of your case. I bet i am not the only one who would agree with you they have seen it also in their doctors!

While we wait for others to check in, do you have any other questions?
Ginger

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Stage three kidney disease Started going to a nepathologist . She took blood three times in the last eight months and still hadn’t gotten back to me on the results. I just asked my primary care physician to refer me to someone else. Are these people that busy or they just have the title and don’t care?

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Stage three kidney disease Started going to a nepathologist . She took blood three times in the last eight months and still hadn’t gotten back to me on the results. I just asked my primary care physician to refer me to someone else. Are these people that busy or they just have the title and don’t care?

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@ms9246 I see in your profile, that you were diagnosed with kidney issues about a year ago. Waiting for a nephrologist to give you results of labwork, or waiting for results from any doctor, can be nerve-wracking and anxiety provoking, no doubt about it! When you reach out to your primary care doctor, I will be interested to hear if the specialist included him/her on your results!

While I have no doubt all doctors, from primary care to specialists, are busier these days, and their time/effort is more taxing, they do need to keep the patient in mind first and foremost. From my own personal experience, I had a nephrologist who I did not feel was giving my complicated case the attention it needed. So, I asked my oncologist [who seems to be more of a primary care for me than my own primary care doctor!] give me some names of who he would recommend and be pleased to work with. My new-to-me nephrologist is great, and very in tune with my case.

Please keep on top of this and let me know!
Ginger

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Ginger stage 3 is no joke . Means you got 25 to 35% kidney function left . At 10% you are stage 5 . This can be a rapid decline if you dont get help

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@ms9246 I see in your profile, that you were diagnosed with kidney issues about a year ago. Waiting for a nephrologist to give you results of labwork, or waiting for results from any doctor, can be nerve-wracking and anxiety provoking, no doubt about it! When you reach out to your primary care doctor, I will be interested to hear if the specialist included him/her on your results!

While I have no doubt all doctors, from primary care to specialists, are busier these days, and their time/effort is more taxing, they do need to keep the patient in mind first and foremost. From my own personal experience, I had a nephrologist who I did not feel was giving my complicated case the attention it needed. So, I asked my oncologist [who seems to be more of a primary care for me than my own primary care doctor!] give me some names of who he would recommend and be pleased to work with. My new-to-me nephrologist is great, and very in tune with my case.

Please keep on top of this and let me know!
Ginger

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