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A MyKidneyDiseaseTeam Member asked a question 💭
Plano, TX
October 7, 2025
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Answer Summary

Members shared how their medical care teams vary widely depending on their specific health challenges, with some managing CKD with just a... Read more

Members shared how their medical care teams vary widely depending on their specific health challenges, with some managing CKD with just a nephrologist and primary care doctor, while others coordinate care across 13 or more specialists including endocrinologists, cardiologists, rheumatologists, and mental health professionals. Several members emphasized the importance of self-advocacy, noting that many doctors provide minimal guidance beyond a diagnosis, which pushes patients to do their own research, ask detailed questions, and maintain updated written lists of medications and medical history to share at appointments and emergency visits. A recurring theme was the unpredictability of CKD, with many discovering they were already at stage 3B during routine checkups, and the shared frustration that family history, medications, or lifestyle factors don't always explain why kidney disease develops.

A MyKidneyDiseaseTeam Member

I envy both of you, William, and Cara! I ended up inheriting all of the worst medical and dental issues from both sides of my family! My Mom died from an aggressive autoimmune disease at 59 and the diabteses came from my Dad's side. My Dad lived to be 89 and I have made it to 68 so far!

October 8, 2025
A MyKidneyDiseaseTeam Member

I have the following 13 specialist on my Team:
• Nephrologist - manages kidney care
• Primary Care Physician - manages every day care
• Endocrinologist - manages diabetes
• Psychiatrist - manages emotional care & depression
• Gastroenterologist - manages GERD
• Pain Management - manages pain
• Neurologist - manages spine and nerve care
• Dentist - keeps my teeth healthy
• Pharmacist - manages drugs and provides prescriptions
• Ophthampologist - manages eye health with diabetes
• Rheumatologist - manages autoimmnune diseases
• Cardiologist - manages cholesterol and fats related to heart disease
• Hematologist - manages anemia associated with kidney care

I have had others too but don't need them right now. The others included three or four specialized surgeons. If you are feeling bad because of all the care you need right now, just rememeber, there are others, like me, that may have a long list too!

October 7, 2025 (edited)
A MyKidneyDiseaseTeam Member

I don’t have diabetes and I’m not on dialysis, so I just have a nephrologist and primary care MDs.

October 7, 2025
A MyKidneyDiseaseTeam Member

When you are on any kind of medication, you should always have a list of your medications or remember them. Another way to remind yourself is go in your patient gateway.And they have a list of all the doctors and all the medications that you are taking that is one of the key elements of you keeping yourself safe when you go to the e.R sometimes they don't know your history.They don't really take the time to look at what's wrong with you.You have to be the one to tell them. And sometimes you have to be the one to do the research? So that, you know that you are getting the best care that you possibly can get that even comes down to the medication that you are taking, because sometimes, if you have high Blood Pressure, you have to be very careful.
At taking certain medications you have to ask them. Is it gonna hurt my kidneys? A lot of people don't ask those questions.

February 3
A MyKidneyDiseaseTeam Member

It's tough to know what to ask when you barely know what your body is doing to itself. When I sence that kind of tug of war might be going on between the doctor and myself, that is when I say: "Let's start from the beginning......" If necessary, I may something like, "I need you to provide some advice......and that is why I am here.....I don't understand the details of how this all works within my body....I want to understand so I don't get any worse." I want to learn but this is all new to me. If comments like these don't let the doctor know I really sincere and I want to know what is going on. That is when I know I need to find someone new to work with me to ensure I know what to ask......" Best wishes as you attempt to learn more and live better!

January 25

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