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Code B.1: Healthy lifestyle is challenging and is amplified in the context of diabetes
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| Provider |
Honestly, I think the number one problem is weight and diet. That’s the most difficult thing that we deal with in primary care.
If I see an obese, diabetic, hypertensive patient…I urge the patient to lose weight, and I tell them usually THAT’s the central goal in order to improve high blood pressure, diabetes and in turn slow down progression of CKD.
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| Patient
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I’m trying to lose weight and when I don’t eat, all of a sudden my sugar drops.
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Code B.2: Early-stage chronic kidney disease is asymptomatic and early education is key
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| Provider |
Patients can keep track of protein intake and their sodium intake, but, the majority of my patients are not going to when it’s an early disease that have no symptoms and they are not facing any imminent kidney issues.
Because they are not having symptom doesn’t mean they are not at risk; so I think that point is really important to educate the patients on.
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| Patient |
I think what really opened my eyes is when I came to that point where my creatinine, my GFR, got to 15 and the doctor said you’re going to need to go on dialysis.
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Code B.3: Social determinants of health and the importance of addressing them
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| Provider |
I point patients to website to find information. I find that the National Kidney Foundation website has the most patient friendly information. The problem with the CKD population here at…is that health literacy is very low. And getting patients access to information is not always helpful because they are not able to process the information or retain it.
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Code B.4: Inability to retain information within the context of a complicated condition and limited duration of provider encounter
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| Provider |
They come in with chest pain, I can’t talk about their kidneys at the same time. At each visit, you have to focus on what is important and you know try to at least touch on many of the other chronic problems as you can.
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| Patient |
You’re hearing from this doctor, you’re hearing from that doctor. At the end of the day, you don’t remember any of that stuff.
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Code B.5: Need for easily accessible nutrition and chronic kidney disease education for patients and primary care providers
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| Provider |
Some patients are confused about the correlation between their blood pressure and kidney disease.
Sometimes it hard to stay on top of every specialist’s recent guidelines.
I deal with every organ system.
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| Patient |
Probably nobody here knew you can’t take Ibuprofen. And we are all probably taking it. Like I’m sore from exercising, I’m just going to pop a couple of Ibuprofen.
I was doing everything right and then, what I come to find out is that my phosphorus kept staying high. Because salad dressing has a lot of phosphorus in it.
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Code B.6: The sequalae of care fragmentation and the importance of self-advocacy
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| Provider |
Orthopedic doctor may put them on something that they might not recognize as being a nonsteroidal. It happens all the time.
People who are sick enough that they are seeing specialists for other diseases whether its heart failure, or diabetes or kidney disease, if they are that sick that they need a specialist, then they are hooked up with nutritionists.
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| Patient |
One doctor was giving me one thing, while the other gave me a medication that hurt my kidneys more.
It’s up to you, the individual, to have those doctors communicate with each other.
I suggested to him that I want to see a kidney specialist.
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Code B.7: Chronic kidney disease is stigmatized
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| Patient |
I don’t see any reason why I have to stand up and say ‘I am fat’.
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Code B.8: Feeling stressed and staying positive
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| Patient |
And from a personal level stress very much affect my glucose level.
It (stress) affects everything.
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| Provider |
Now that you’ve been diagnosed with kidney disease, it’s important to maintain positivity…look at that something motivational.
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Code B.9: Patient and provider shared decision-making
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| Provider |
Probably comes out more as an authoritarian: ‘You have to monitor these kinds of things.’ Rather than trying to work out a sort of agreement with patients.
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