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Posts from the ‘Healthcare’ Category

Mystery Date.

There was a board game marketed to girls back in the 60’s that resurfaced again in the 90’s, and that’s when I met Mystery Date.  It was a silly game where you tried to assemble an outfit for a date and then you opened the little plastic door to see if your outfit matched that of the Mystery Date guy.  (For example: if you had assembled the “beach” outfit and opened the door to reveal the guy dressed for a “formal dance,” you lost … the game, and also 20 minutes of your life to this stupid, sexist game.)

But Mystery Date popped into my head for a reason.  Since having my son, I’ve been working to wean myself off the Boston-based care team in pursuit of more hyper-local providers (and because I loathe the arrival/departure board at Joslin).  The promise of pregnancy now the past, I don’t feel the same push to make the long ass drive to Boston in order to meet my medical needs.  So in the last few weeks, I’ve been working to assemble a new, short-drive team of healthcare providers.  I currently have new appointments with an OB/Gyn, a primary care doctor, and am gently shopping for a new endocrinologist.  (I plan to keep seeing the team at Boston to track my existing eye complications, as I don’t want that crap going off the rails.)

Finding new providers is kind of like Mystery Date.  I spend a lot of time combing my insurance company’s website to see who is covered by my plan, then calling those HCPs to see if they are taking new patients, and then getting all of my records shipped from previous providers to the new team.  Then I open the little plastic … I mean, the regular-sized medical office door to see if what I’ve assembled matches what’s being provided.

Finding a new healthcare provider is similar to starting a relationship.  There’s this slightly awkward breaking in period where you are both getting to know one another, and then either the confirmation that, yes, personalities and needs are lining up or NO WAY expectations are way maligned.  For me, I crave a personal relationship with my healthcare team, one that the healthcare system barely makes room for.  Being treated as a whole person provides the best health outcomes for me; it’s important for my team to see my health concerns in the context of real life.

Otherwise, it’s like showing up dressed for the BIG SKI TRIP only to see that your healthcare professional is more into a romantic picnic.  Or worse …  the experience goes full DUD.

 

Being a Rotten Patient.

Yesterday, I was a rotten patient.

At this point in my previous pregnancy, I had already been in hospital on bedrest for two weeks, so this whole rolling around on the “outside” while a few days shy of 37 weeks pregnant is new to me.  The emotions I felt on bedrest were really volatile and I cried a lot and HEY that same shit keeps happening even though I’m not on bedrest currently.  Which means that my third trimester experiences are consistent, at least emotionally.

Which sets the stage for yesterday. I had an appointment at the maternal fetal medicine offices and then at my endocrinologist, both up in Boston.  Usually, the ride takes me about an hour and 45 minutes, but I give myself 2 hours and 15 minutes every time, to anticipate traffic.  Yesterday, the ride took two and a half hours because of wicked traffic on Brookline Avenue, which made me late for my scheduled ultrasound.

I do not like to be late.  And yesterday, being late made me all emotional.  My car crawled up Brookline Avenue while I imagined having to reschedule my appointment for the following day, making the stupid drive all over again.  By the time I pulled into the parking garage, I had six minutes to find the right hospital wing and check in for my appointment.

Which, of course, I did not do efficiently.  Late pregnancy hormones and emotions have my brain mostly scrambled, so I ended up in the wrong wing of the clinic, nowhere near where I was supposed to be.  My blood sugar started to tumble at this point, bringing emotions even more to the surface while I left a trail of glucose tab dust along the hallways of Beth Israel.  Add that to the fact that I was late and mildly lost in the myriad of signs and corridors and I lost my cool.

Man, I felt stupid.  I was crying while waddling through the hospital, asking random people how to get to the proper hospital wing.  Their directions weren’t making sense to my slightly hypoglycemic head.  I could not pull myself together, awash with frustration and embarrassment and unable to control the emotional maelstrom swirling around me.  I was unjustifiably angry that the best care for myself and my kid included a four hour road trip for every doctor’s visit.  I was so tired from the low blood sugars that kept me up from 3 – 5 am and were the most symptomatic I’ve had in ages.  I was angry that I couldn’t guarantee safety for my child as a result of my own health garbage.  I was afraid that the stress of the moment was kicking my blood pressure into dangerous ranges.  I was a frightful mess and it wasn’t anyone’s fault but mine but holy moly, I was blowing up balloons by the dozen for this ridiculous pity party I was throwing for myself.

By the time I arrived at the right place, I was 15 minutes late and trembling.  And angry.  So when the nurses were waiting outside of the bathroom to grab me for my appointment, I snapped at them.  When they took my blood pressure while I was crying (could NOT stop for some reason), I knew the result would be elevated and would trigger a whole catalog of panicked responses from my healthcare team.  Of course it was high, and of course I snapped at them again.  Not their fault that I was late and my BP was high, yet they were the unfortunate recipients of my rage.

When the nurse I’ve been working with and a new doctor came in to discuss the results of my ultrasound (baby is fine) and my blood pressure (elevated for reasons I knew but they couldn’t pretend it couldn’t be a symptom of preeclampsia), I was still ranty and snapping.  I could not calm down and I felt terrible – TERRIBLE – that I was lashing out at a medical team whose purpose was to protect my health and the health of my baby.  But I still couldn’t get my shit together and acknowledge that for more than five minutes.

I was a rotten patient, all frustrated and angry.  (The ultrasound technician told me it was okay and that they see a lot of emotions during appointments, and I felt myself simultaneously apologize and then get all upset again.  No control.)  I snapped at healthcare professionals who were not to blame for my terrible mood.  I could not control my emotional responses to their reasonable requests.  I’m embarrassed at how I acted.  I hate admitting all of this.

The appointment circuit was finished later that afternoon, after everyone had reached the conclusion that I was able to go home until the next appointment (later this week) and reassess then.  I apologized to the people I had acted bananas towards and drove home, hoping to be more emotionally stable the next time.

I need to see this pregnancy through safely, but the last nine months have really opened my eyes to what I need to receive, as a patient, and just as importantly, what I need to bring to the table, as a patient.  Sometimes I can’t effectively perform as a full-time pregnant person, or a full-time person with diabetes (and clearly I’m struggling with doing both of those things at the moment), and I need to own that part of my healthcare experience.  Or at least stop crying in the stupid elevators, making everyone on there with me think I’m about to give birth in front of them.

Just a Job.

“I’m just a medical assistant, so my job isn’t as important,” she said as she took my blood pressure and entered the data into my digital file.

“Seriously?  How can you say that?  You probably have more face-to-face moments with patients than the doctors do.  You set the tone for the appointment.  What you do matters.”  I paused.  “Take my blood pressure again,” I laughed.  “It probably just went up.”

She smiled.  “I guess it is important.  But not as important as the doctor.”

It’s strange how people think their interactions don’t matter, don’t have an influence on the patient experience.

When the receptionist checks me in for my appointment, she contributes to the tone of my appointment.  Even if she is asking me for my insurance information for the tenth time, or informing me of an outstanding balance on my account, or telling me that the doctor is running late today, the way she delivers that information colors the experience.

When the phlebotomist is steady-handed and double-checks the information on the blood vial label against my file, their attention to detail and dedication to comfort colors the experience.

When the medical assistant makes eye contact, engages the patient, and acknowledges that the data they are collecting is from a human being, not a lab rat, they color the experience.

When the clinician is on time and the appointment is not an exercise in redundancy and checked boxes on an electronic medical record but instead a discussion between a patient and a provider that influences positive health outcomes, that interaction colors the experience.

And when I’m on time, and I have the necessary and requested data from my diabetes devices, when I have my list of questions and concerns, when I pay my bill or file my claim, and when I’m respectful of everyone’s time and expertise, I color the experience.

There is no “just a …” when it comes to the healthcare experience.  Even when it’s not medically coded as a “shared medical appointment,” the appointment is still shared between the patient and everyone their interact with.  Everyone involved makes or breaks those moments for the patient and the healthcare team alike, with each person playing a crucial role in keeping the process effective, efficient, and evolving.

Everyone.

(EVERYONE !!!)

 

Reimbursements.

“I’m not positive I can make it in for that appointment, since I’m traveling for work for the majority of those weeks.  Would it be possible for me to send my device data by email and have you review it for any issues?”

Without pausing, my endo said, “Yes, we can do that.”

We’ve seen a lot of one another over the last seven months, as my pregnancy has progressed.  Appointments are at least monthly and while we review the same things during every appointment, reviewing these same things is necessary over the next few weeks.  She made a note in the computer system and something occurred to me.

“Do you get paid to review those emails?”

“The emails?”

“Yes, when I email you blood sugar logs and you review them.  Are you paid for that?”

She paused from her typing.  “No.”

I never forget that the issues I have with the hospital system are not related to my endocrinologist specifically.  She’s forced to work within that system, and her ability to flex her capable caregiver muscle is hindered by billing codes and administrative responsibilities.  But I do forget that she goes above and beyond in many circumstances, oftentimes not paid for the work she does for her patients.  And I’m not nearly as appreciative of her work as a clinician as I should be.  It’s not her fault the system sucks.

“Thank you for doing that,” I said.  “I appreciate it.”  Our appointment continued.

Being a patient is hard work.  I didn’t choose this road, and I would not choose this road.  But being an endocrinologist is hard work, and her road was chosen.  I have to remember to say thank you more often.

Diabetes Blog Week: The Healthcare Experience.

The Healthcare Experience:  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? Today is the day to share it all!

(And for more on the topics of Diabetes Blog Week 2016, click here.)

This one will be short and sweet, thanks to a very tardy publishing schedule today (thank you, child’s ear ache coupled with four different low blood sugars for me during the course of the night), but I’ve written about the healthcare experience before.

I’ve done the “appointment wishlist” thing.  I’ve wanted to build my own doctor’s appointment.  And marveled at the weird airport departure-esque board noting the on-time arrival of HCPs.  I’ve rolled around in the healthcare hamster wheel.  I’ve even been tested to confirm my type 1 diabetes … after living with type 1 diabetes for over 28 years.

And as a patient with decent insurance and excellent coverage for different diabetes related devices at the moment, my chief complaint, and subsequent request, regarding the healthcare system is simple, but firm:

BE ON TIME.

Diabetes is a time suck, even on its best days, and the less time I can spend dedicated to diabetes, the better.  But I can’t skimp on checking my glucose ever morning or changing my pump site every few days.  Logging blood sugar data is important, too.  So is making the time and effort to eat right and exercise.

And hot damn, all of those doctor’s appointments take up a lot of time, but they are important and proactive and necessary but FOR THE LOVE OF GOD, waiting over an hour to see an HCP is completely ridiculous.  More often than not, my doctors are late.  Please.  Be on time.  I’m on time.  Please be on time.  The doctors are terrific, but the system is making access to them inconvenient at best and impossible at worst.  Wasting a whole day going to the doctor is not the best way to keep me motivated; if anything, it’s incentive to cancel appointments and reschedule.

Be on time.  Please.  Please.  Please.

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