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Posts tagged ‘Joslin Clinic’

Body Wars.

The Good:  Birdy’s seventh birthday party went off without a hitch.  The cake was made, the guests were fed, the bouncy castle was a source of glee for kids and adults alike, and my daughter spent the day red-faced from jumping, laughing with her friends, and covered in cake frosting.  Cannot ask for more than that.

The Bad:  On Friday morning, my right eye was sore and puffy and those familiar “corneal tear” feelings were close to the surface.  Sometimes this happens and my eye settles down after a few hours (after lots of preservative free tear drops and very little screen time).  And other times, this means the eyeball is cooked and the cornea is going to fully tear.

Which it did.  Friday afternoon, I was lucky enough to get in with my local ophthalmologist, and being the hero human that he is, he was able to confirm the tear, give me some antibiotic drops to help minimize swelling and speed up healing, and then he slapped a bandage contact on my eye so I could function almost normally.  “Your vision out of that eye will be cloudy because of the contact, but hopefully the pain will be greatly reduced.  Come see me next week and we’ll take it out before you travel again.”

Awesome.  This went from bad to better.  Thank goodness for modern medicine.  (More on the eye thing in a bit because that’s an ongoing story.)

Emergency eye appointment (torn cornea, round 8). PWD everywhere … even in the magazines. #waitingwithdiabetes

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The Ugly:  Armed with the bandage contact and a babysitter, we took Birdy out on Friday night for a show she wanted to see.  And she loved it.  And we loved it (as much as parents love kids’ shows sort of thing).  And about halfway through the show, I decided I didn’t love it because my stomach was churning and my blood sugars were rising quickly.

Figuring I had a busted infusion set or maybe this was a blood sugar response to eye pain, I sat in the lobby for the rest of the show and tried to get my head straight and stomach settled.

But on the ride home from Providence, my purse went from carrying my wallet and car keys to holding my puke.  Not my best moment.  But it all went in the bag so that’s something.

And for the rest of Friday night, well into Saturday morning, my body spent those hours rejecting all of its contents.  I haven’t thrown up from being sick in at least 15 years (the only times I’ve vomited in the last whatever decades have been after c-sections).  This was a whole new and horrible party, which gave way to severe dehydration (despite sucking down diet flat ginger ale and water), fever, high blood sugars, and small to moderate ketones.

I spent Saturday in bed, sleeping or throwing up, while my kid’s birthday party took place outside.  It took about 48 hours to fully clear this bug, and the aftermath still included ketones and a general dizziness.  And it totally threw me because I’m usually able to work through sickness pretty quickly, if I get sick at all.  I don’t ever spend the day in bed, unable to stand up because I’m too weak or too sick to eat.  This was gross and new territory for me.  And it forced a quick and necessary review of the sick day rules.

This is what 24 hrs of violent vomiting did to my blood sugars. #insulinbecamewater

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The Recap:  The circus of vomiting has stopped.  My blood sugars, thanks to a 200% basal rate and some injections and plenty of hydration and vigilant ketone testing, have come down quite a bit and hopefully will be less offensive soon.  My family seems to have escaped the germs so far; hopefully locking myself into the master bedroom and hiding like The Big Man on Campus helped. No cats have puked yet. And once this eyeball heals up, diabetes can go back to being the top health dog.

… oh, and I cleaned out my purse.  I plan to keep using it.  And I’ll never tell you which one it is.

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.

Healthcare Hamster Wheel.

For the last few years, doctor’s appointments have felt like an exercise in “checking the boxes.”  Yeah, I called and made an appointment with my endocrinologist.  Yeah, I had my A1C drawn and the result was either given to me that day or a week later by way of calling the clinic.  Sure, I get weighed and we download my Dexcom receiver and my pump settings and my meter.  Yep, let’s look at the blood sugar trends.

It’s impersonal.  An odd contrast to how intimate and personal type 1 diabetes is.   And a challenge to be motivated to make the effort to visit my endo when it feels like an exercise in checking boxes, kind of for both of us.  Nothing happens.  I don’t want anything dramatic to happen in terms of my health, but the cycle of going to the endo every four months or so feels like I’m a chronic disease hamster wheel.

I don’t know if it’s the frustration of the healthcare system or frustrations with the relentless monotony of diabetes, but I drag myself to the endo’s office, even now.  Usually, I schedule my OB/GYN appointments and my endo visits for the same day (making it one full day of doctor’s appointments in Boston instead of two), but the only appointment I actively care about is the OB/GYN.

The experiences are completely different.  My OB/GYN is in a relatively small office and I’ve never waited more than 15 minutes to be seen by the doctor or nurse.  The nurse takes my weight and blood pressure and we run through the information on chart, checking the baby’s heartbeat and talking about what’s happened since I last saw them, and what to expect for my next visit.  My OB comes in next and we may or may not do an ultrasound (depending on what week in the pregnancy I’m at).  Of course these visits are more interesting, right?  Pregnancy has a set of milestones that are reached quickly, and the whole process is complete in a set number of weeks.  It’s kind of unfair to compare OB visits to endo visits.  But during the visit with the nurse and then with the OB, they are looking at me.  They are making eye contact with me.  It seems like an insignificant detail, but it has the most significant impact.  In these visits, I feel like a human being, receiving care for the whole of me.

The warmest, most humanizing interaction at the endo’s office should not be the one where the woman I held the bathroom door open for thanked me and told me to have a happy Easter.

At the Joslin Clinic, I’m asked to arrive 20 minutes early for my appointment and I do, only I’m rarely seen on time.  (Last week, I had to go through the “Do you have insurance?” song and dance, despite the fact that I’ve been at the clinic at least three times this year alone and they’ve properly billed my insurance company.  Yet somehow my insurance information was missing and we spent ten minutes re-entering it. Waste of the receptionist’s time.  And mine.)

My last appointment was at 11.40 am.  I was in the waiting room at 11.20 and wasn’t called in for labs until 12.19.  I didn’t see the doctor until 12.35.  And as much as I respect my endo for all of her expertise and the care that she takes of her patients, I feel exactly like a cog in a machine during those visits. Few moments of actual discussion.  I spent several minutes last visit staring at the ceiling while she reviewed notes.

“Have you had recent weight gain?  Fatigue?  Have you been waking up to urinate in the middle of the night?”

I leaned in.  “I’m pregnant.  Yes, to all three.  Hi.”

Boxes are clicked on a computer screen instead of an actual discussion taking place, and that kills me because she’s a better doctor than that.  I received an A1C value that was the lowest I’ve had in my entire life, and yet it felt like another box checked instead of even the briefest of high five moments.  Shouldn’t victories be celebrated?  Shouldn’t interactions be warm?  This past visit, lab work I had drawn during the previous visit wasn’t in my file, frustrating us both. The whole botched system makes it difficult for my endo and I to even have an effective relationship.  I feel like she’s forced to work within the expectations that the healthcare system has placed on her, and I try to picture what her day must look like, with patient after patient being shuttled into her room, the demands on her time borderline bananas.

But then I remember that I don’t have to care about all the other patients.  My doctor does.  The perspective is useful, but I’m the one patient I care most about. Especially these days, since more than just my one body depends on my good health.  And lately, my experiences at Joslin are very disappointing. I’m spoiled rotten to be a patient at one of the best diabetes clinics in the world, aren’t I?  Longwood medical center care is worth the two hour drive from my home in Rhode Island, isn’t it?  I’m healthier because of those doctors, right?

I’m not sure anymore.  My health outcomes are a product of the access I have, the work I put in, and the expertise of my medical team.  Not one or the other.  I feel like I stick it out with Joslin in anticipation of the complications that may come, not as a method of preventing them.  I want a diabetes team that sees me as a whole patient, not just a pancreas or a set of eyeballs that need screening every few months.

I will see this pregnancy through at Joslin pregnancy clinic because it worked well the last time, and I want the best for my baby.  But I’m already researching local endocrinologist offices for after the baby is born, in effort to feel like a human patient interacting with a human doctor, in a system that recognizes people over paperwork.  I’m done with HCP visits feeling more frustrating than fruitful.  The time to take back my personal healthcare system is now.

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