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Diabetes Blog Week Day 4- Healthcare Experience

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Diabetes Blog Week

Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? 

Oh man, I don’t even know where to begin. I’ve had so many awful experiences with doctors, offices, insurance companies and pharmacies. I can’t forget about the Epic Letter of Complaint that I wrote and sent to a former endocrinology office. Or the more recent Insurance Frustrations I’ve dealt with that are all too common.

Unfortunately I have yet to have a doctor and office where I felt like I consistently received competent, respectful, helpful care. Some visits and doctors have been better than others, but on the whole, there is much room for improvement. In fact, at my last appointment, the doctor forgot to check my A1c! We’re talking lack of basic diabetes care here.

So I’d like to invite you to my imaginary endocrinology appointment, an idealistic appointment where I get the exact care and consideration that that I as a patient and person deserve (and you know, a few extra perks since this is my fantasy appointment after all).

Receptionist: Good morning Reva, you’re here to see Dr. Rainbow?  Please have a seat in the massage waiting chairs, the doctor will be with you in a just couple minutes. She is actually running ahead of schedule this morning.

Nurse: Hello Reva, come on back with me. I can take your pump, dexcom, and meters from you. We’re going to download all your numbers and information and use a software that graphs them together. Do you use any additional apps that we can also incorporate the information? Any fitness or food tracking apps? With this integration, we can get a better idea of how exercise is affecting your blood sugars and if your carb and insulin ratios are adjusted for the foods you eat and when you eat them.

Now we’re going to check your A1c right here in the office with a simple finger poke. We know how annoying it can be for you to have to go to a separate lab early in the morning before work and before your appointment to get your blood drawn to check your A1c. And then have the lab forget to send it to your doctor so it isn’t there when you arrive for your appointment. We wouldn’t want that to happen to you.

You’ll be in exam room 2. It looks like the doctor is ready for you now.

Doctor: Hi Reva. I wanted to let you know that all your prescriptions are up to date. We were contacted by your pharmacy that your insulin prescription needed a refill. So we took care of that and it should be all set when you’re ready to order more.

So, how do you feel things are going? I have your graphs up on the screen and I can see some places that we can make some small adjustments. But before we go into that, do you have any specific questions or concerns  you’d like to talk about?

Our nutritionist is in the office today if you’d like to meet with her after we finish. Now let’s take a look at your graphs. Your A1c is looking good, good work on improving it since our last visit.

I also wanted to see if you’d be open to talking about or trying different brands of insulin or other medications that have been approved for use with type 1 diabetics to see if we can get your numbers under tighter control. What I would hate to have happen is to not talk about other options that exist, since treatment of type 1 diabetes has progressed over the years. We pride ourselves at this office with keeping up to date with the latest research, technologies, and treatment options. You deserve the best care that we can provide and we will work together to make sure you get it and reach the goals that we’ve worked together to set.

Is there anything else that you’d like to cover that I may have missed today? I want to make sure that you feel like you got the most out of this appointment and feel comfortable with your changes and next steps. Great.

Well, I look forward to seeing you in 3 months. If you have any questions over the next few months, please don’t hesitate to call, email me, or use the patient portal to communicate and I will personally respond within 24 hours. I would hate for you to have to make multiple calls and wait days to get a simple answer from me.

Have a good rest of your day and keep up the good work!

And scene.

Diabetes Blog Week Day 3- Language

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Diabetes Blog Week

Today’s topic:  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples?

 

“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.

That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.

It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.

Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!

It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.

I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.

Can I have a re-do?

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I often dread my endocrinologist appointments. But at the same time, I’m thankful for the 4 appointments each year. They’re forced moments of reflection, confrontation, and adjustment. Before each appointment, I consider how things are going. I know if the past 3 months have been good or bad. If it hasn’t been a good 3 months, it’s a time to confront myself and delve into why my numbers have been high or low or just all over the place. Sometimes it’s my own self-management habits that have slipped, other times it’s factors that are out of my control like getting sick. Then based on how things are going, I make adjustments along with my doctor and move forward.

Today was one of those appointments that I just wanted to get over with. The past month and a half has been rough. My numbers have been running high consistently. Between getting a pretty horrible cold that lingered, having to go on steroids for the sickness, stress from a breakup, adjusting to time changes of traveling, and then just a weird couple weeks where it seemed like my insulin wasn’t working as it normally does, I knew my doctor would be looking at some pretty awful numbers at our appointment.

Part of me is disappointed. I don’t like to be this off track. I don’t like knowing that I’m potentially doing lasting damage to my body, that I’m increasing my risk of complications. But I also know that life happens. There’s a lot that I can’t control and those events may unfortunately impact my health by way of my blood sugar. All I can do is my best to try to manage the consequences.

Diabetes is a chronic disease. It means that as of right now, I’m stuck with it for the long haul, it’s not going anywhere. And as much as I get caught up in these mini 3 month sprints between appointments, there’s a bigger picture. Three months is not very long when you look at a lifetime. And shit happens. There will be highs and lows in life just as there are in my blood sugar. I admit, I’ve had other things on my mind lately besides my diabetes and I’m sure that’s played a part. But I can’t control everything that happens, at some some point you have to let go and just do the best you can within your circumstances.

So yea, I’m not thrilled about this appointment and the past few months. But unfortunately there’s no re-do’s or rewinds with a chronic condition. What’s done is done. Now, I’m putting aside my excuses and focusing on moving forward.

 

The Patient Experience

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I work for a global healthcare leader. A couple weeks ago we had our company conference. While listening to the various speakers within the different business segments of the company, one theme became very prevalent. Leaders in pharmaceuticals, medical devices, and consumer healthcare, all kept emphasizing the same topic: the patient experience. Speeches were littered with phrases like, “patient-centered”, the “patient journey”, “putting the patient first”. As a public health professional and as a chronic disease patient myself, I was happy to see the clear focus shifting towards the patient.

But then I stopped to think about what this really means. As a type 1 diabetes patient, what does patient-centered care really look like?

To start, I can tell you what it does not look like. A few days ago, I received this letter from my health insurance company. At the top of the letter it read, “Talk to your doctor about this important issue. It may improve your health.” Intrigued, I kept reading. The letter explained that they had basically reviewed my health records and wanted to bring a potential health problem to my attention so that I may speak to my doctor about it. The health topic was on the back of the letter. Since my various doctors have already tested and reviewed my blood work, I was curious what health issue they may have missed. I turned over the letter.

The first line on the back said, “Our data shows that you may have diabetes.” The paragraph went on to explain the importance of checking for protein in the urine as a sign of kidney damage if you have diabetes. It’s not the letter itself that annoys me. I actually think it’s great that the health insurance company is sending reminders or health information to patients to bring up with their doctor. It’s the fact that the first line says, that I may have diabetes. Guess what? I do. And I have for the past 14 years. Honestly I find this letter off-putting and probably has the opposite effect than intended. I expect that my health insurance would know that I have diabetes, they see the diagnosis codes for all my doctor’s appointments, they aren’t making a leap to say that I have it. Telling me that I may have diabetes basically says that you don’t know me at all. It’s the opposite of patient-centered. It’s communicating that I’m just another medical record that a computer scanned and looked for key words or results to send a form letter.

If they had just changed the top line, I would have reacted completely different to the letter. They should have instead said, “Reva, since you have type 1 diabetes, here is some information that you may want to bring up with your doctor at your next visit.” This would have instilled confidence that my health insurance company actually knows my health condition, it would have felt more personal, and I would have reacted overall more positively to the actual information rather than getting caught up in the first line.

My “patient experience” doesn’t just happen in my endocrinologist’s office 4 times a year, it’s tied up in everything that is communicated to me and that I do day-to-day. It’s in letters like this one. It’s in all the moments between doctor’s appointments. It’s in the way that the doctor speaks to me and even in their particular word choices when talking about my diabetes. It’s in the waiting room or exam room when I’m waiting 30 minutes to talk to the doctor for less than 15. It’s in my conversations with customer service about my pump or CGM. It’s in my multiple phone calls with my mail order pharmacy when they screw up my insulin prescription or the countless inconveniences of getting my a1c test done. My patient experience involves the lack of integration and communication between doctors and health care systems and even medical devices.

I applaud the shift and emphasis on the patient experience. It’s about time. When a patient truly feels at the center of their care, that their time and efforts are acknowledged and respected, when their obstacles are recognized and addressed, I think there is huge potential for helping patients live longer and healthier lives. I’m glad to see that we’ve taken the first steps of a long, but necessary journey.

Missing puzzle pieces

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I’ve felt like Goldilocks lately. Although maybe a Goldilocks with brown curly hair and way less luck.

I’m starting to have issues with my new endo. Again, the issues that I am having are less about the specific doctors and more about my frustrations with doctor’s and the office not utilizing the technologies that are available to them to their full potential. And misusing the ones that are.

Like most T1Ds, I have a lot of devices that carry a lot of data. And those devices are able to download their information when connected to a computer. But you get slightly different information from my pump (finger prick glucose numbers and insulin delivery amounts) than from my CGM (glucose numbers from the sensor) and I don’t always think that the CGM is the most accurate, especially at the beginning or end of the cycle I wear it.

At my new endo office, my doctor downloads my CGM and pulls up a graph of the last week. She doesn’t take my pump or meter, in fact, I once asked why not and she wasn’t even sure she had the right equipment to download from the pump. I completely trust that my doctor knows what she is doing and her recommendations do make sense. But I’m often left wondering if the recommendations would be the same if we were looking at 2 or 3 weeks worth of data or even looking at glucose numbers from my meter (which are on my pump) in addition to my CGM.

On one hand, I’m grateful. I remember when I was first diagnosed being handed a little log book that I would have to manually write in my glucose numbers. But on the other hand, I’m frustrated with the way things are. I want integration. Maybe it’s time that I align my pump and CGM to compatible companies. Then at least all 3 of my devices would be talking to each other for a more complete picture. But I’m lazy and don’t want to learn a whole new pump or CGM system when I’m generally satisfied with both separately.

And while part of the responsibility is fully on me as the patient, another part is on the doctor and the offices to keep up with changing technologies so that they are effectively and accurately using the data that is available to them.

I feel like my diabetes is a puzzle and my doctor is only looking at a handful of pieces when telling me what to change. You’re looking at the trends in my blood sugars, but you’re not looking at my boluses throughout the day. You’re not looking at the foods I’m eating (which I have been tracking in a separate app for the past 6 weeks) or exactly when I eat them (besides asking me generally when I eat). You’re not looking at when I’m exercising and what kind of exercise I’m doing, when my cycle is, when I got sick, and even when I was feeling extra stressed. My numbers are all important, but alone, they lose some of their meaning. You’re looking at my blood sugars essentially in isolation because:

A) that’s the data that’s available to you
B) we only have a finite time together so you aren’t able to ask me about all these other factors
C) there is no universally used platform that can integrate this information easily for you

I’m frustrated. But I’m also hopeful. I know that today, my data is more available, accessible, and interpretable than it was 10 years ago. But I know we have a ways to go before every office has the equipment, the skill and the motivation to look at the whole puzzle for every one of their patients, and not just a few pieces.

Diabetes Art Day 2014

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I’m so pleased to be participating in the 5th Annual Diabetes Art Day! This is my second year participating. Art has always been valuable to me in my life as a form of expression, and I love creating art with a purpose. It’s a way to express thoughts or feelings that can sometimes be hard to articulate when it comes to my diabetes, and Diabetes Art Day is a great opportunity to share those feelings through a unique medium.

This year my piece is called “The Low Journey”. It’s an abstract interpretation of what low blood sugar feels like for me using sharpie and water colors. It begins in the first picture with the realization that you are going low, that dark, confusing feeling of being disoriented and out of sorts. The feeling is confirmed with a finger poke and reading on the meter. In the next picture, the treatment of the low is depicted. I use fruit snacks to treat my lows. Then comes the agonizing 15 minutes of waiting to feel better, but feeling helpless in the mean time. Finally, the last picture shows how the dark clouds hanging over you eventually begin to lift as your blood sugar returns to normal and the sun finds its way through the dark clouds.

The Low Journey
Thank you to Lee Ann Thill from the Butter Compartment for organizing Diabetes Art Day. Be sure to check out everyone’s wonderful submissions in the 2014 Diabetes Art Day Gallery!