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Posts tagged ‘diabetes and healthcare’

Building a Healthcare Team

Since deciding that our family of four was the maximum number of people to be in our family (read: no more babies), I’ve been working to transition as much of my healthcare team from Boston to Rhode Island.  After almost 30 years at the Joslin Clinic, this has been a tough transition, because I’m so used to their style and routine.

As in, of course you sit in traffic for two hours before the appointment.  Of course the endocrinologist is forced to schedule three patients, all for 1 pm appointments, making everyone late and frustrated.  Of course lab work results get lost.  Of course it’s all-day project for a disease I don’t like.

… of course I needed to make changes to improve convenience and access and reduce overall rage.  Quit complaining and make changes to improve the mess, right?  Right.

Over the last year, I’ve been testing out different doctors for primary care, OB/GYN, eyeball needs, and endocrinology.

  • Primary care has been a bust as the clinician I initially chose wasn’t a good fit at all.  (She wasn’t comfortable talking about anything related to diabetes, and I need to have a doctor who at least acknowledges that my pancreas is shit.)  But I have another option scheduled for January so hopefully that doctor will be a better partner in my care.  I’ve always wanted my PCP to be the center of my healthcare team, but so far, that’s been a no go.
  • I have always had a local OB/GYN but needed care in Boston for both pregnancies, so my OB/GYN team here in Rhode Island has historically handled everything but my babies.  Now that I’m firmly in the no more kids camp, I’m back to the team I’ve used since college.  All the clinicians in their practice are a good fit, so that’s all set. They’re terrific.
  • My dentist is awesome.  I’ve written about dental crap a bunch of times here, mostly because I have very sensitive teeth and am a HUGE baby when it comes to dental visits, but the right team and their compassionate expertise has made my visits to their office comfortable.  Dare I say FUN?  (No.  Not yet.  Maybe if they design cool grills?)
  • For eyeball needs, I’ve been going to the Beetham Eye Institute at Joslin.  I trust their expertise without question (despite having the diagnosis of a complicated eyeball told to the computer screen instead of to my face, but I’m not as angry about that anymore).  Oddly enough, though, my eye complications improved to “minimal” during my last pregnancy, taking me off the “every three months” list at Beetham and reducing me to yearly.  That, coupled with some recent corneal abrasions, drove me to find local eyeball care.  I am really grateful that I’ve secured a doctor who makes me feel comfortable that he’ll detect any issues and will refer me out to another specialist if he feels my complications are beyond his ability to manage.  THAT is the mark of an incredible clinician – taking good care of patients while simultaneously acknowledging their own human limitations.  This doc is a keeper.
  • And my endo has always been the core of my healthcare team.  At Joslin, I’ve worked my way through their slate of endos since my diagnosis back in 1986 – starting in peds, working my way into the adult clinic, moonlighting over at the pregnancy clinic a few times, and then returning to adult care.  The need to move my care hyper-local brought me to an endo in Rhode Island who, aside from being a shorter drive, totally gets it.  While we’re still in the weird “getting to know you” phase of patient/clinician interactions, I trust this endo because he has many years of expertise in type 1 diabetes and also because he views my opinions and goals as important as his own for me.  This is the kind of teamwork I enjoyed at Joslin, only minus the insane commute.  At my appointment yesterday, I had a good experience with the reception/labwork staff (more on why that matters later), my appointment started on schedule (11.30 am, not noon or noon-thirty), and my endo ran through my list of questions without dismissing them.  After a few more visits with this endo, I’ll consider myself officially weaned from Joslin.

Switching clinicians is stressful, for me, and I don’t enjoy all of these mystery dates.  But I’m getting close to a team that I feel can handle all the moving parts of my health AND they’re all within a 25 minute drive, and that feels pretty freaking good.

Diabetes Access Matters.

A running list of medications/devices I currently use throughout the day to attempt to manage my type 1 diabetes:

  • insulin pump (t:slim)
  • insulin pump supplies (cartridges, tubing, cannula)
  • glucose meter (Verio Sync)
  • glucose test strips (One Touch)
  • Humalog insulin vials
  • continuous glucose monitor (Dexcom G4 at the moment)
  • Toughpads (to prevent Dexcom adhesive reactions)
  • prenatal vitamin

And then there are the back-up items that need to be kept on-hand in case of a hiccup:

  • Labetalol blood pressure medication (that I am currently not taking, thanks to the miracles of pregnancy and exceedingly low blood pressure this round)
  • long-acting insulin (Levemir, for pump breaks or when the pump breaks)
  • Humalog insulin pens (to keep in my bag just in case)
  • glucose tabs
  • syringes

These are the health care professionals, diabetes-specific and otherwise, whose numbers I keep on file and see at least once a year:

  • endocrinologist
  • primary care physician
  • certified diabetes educator
  • high-risk OB/GYN (active now due to pregnancy)
  • regular OB/GYN (for non-pregnancy years)
  • cardiologist
  • hematologist
  • psychologist
  • dietician
  • dentist
  • podiatrist
  • dermatologist
  • retinal specialist
  • ophthalmologist

This gets pricey.  But I have health insurance.  And a job.  And emotional and financial support from my family to help fill in gaps where shit gets weird.  I don’t make use of everyone/everything on these lists every day, but my health is cumulatively best managed by all of these things being available.

Chronic illness keeps me busy.  Managing it well, even more so.

I’m trying to imagine one of the bricks being pulled out from this wall of attempted proactive care that I’ve spent 30 years building around myself.  What if I found out I was pregnant and didn’t have a  OB/GYN to help guide me through a high-risk pregnancy and complicated delivery?  Bad.  What if I needed to check my blood sugar seven times a day but my insurance company only covered three glucose meter strips per day?  Worse.  What if I needed insulin but didn’t have insurance coverage and didn’t have enough money to pay for my life-sustaining medication?  The end game there is effing terrifying.

Access is an issue.  I have been able to voice opinions about my diabetes devices because I’m lucky enough to have access to devices.  People talk a lot about “privilege” and sometimes people roll their eyes, thinking another buzzword is being deployed, but seriously, what does your medicine cabinet look like?  When I go into my closet, I have a whole shelf dedicated to boxes of insulin pump supplies and CGM sensors, enough lancets to check my glucose levels until I’m 113 years old (read: two boxes), and my fridge has a two month supply of Humalog sitting pretty in it.  I am fucking lucky.  To not acknowledge that is criminal.

I’ve been thinking about the United Healthcare / Medtronic stupidity, and am still very bothered by it.  It’s not that companies are making a business deal, but that their business deal supersedes what’s best for the patient.  No company should be telling me and my doctor what’s best.  Isn’t this part of why my doctor doesn’t have those pens with drug logos on them anymore?  Because company influences were supposedly removed from my doctors’ interactions with me?  Because the decisions made between me and my diabetes healthcare professional were supposed to be about what’s best for my health and well-being?

Oh right … that.

This issue isn’t unique to Medtronic or UHC.  Insurance companies have their preferences, and their preferences rarely take the preferences of their patients into account.  (Remember when people were bumped from Novolog to Humalog based on a change in their formulary?  That went well.  And by “well,” I mean people were pissed off and, as a result of the change, their care suffered.)  Thirty years of type 1 diabetes has shown me that a lot of groups want their hands in my disease, and not everyone is putting the patient first.

Which is why the patients need to put the patients first.  Immediately.  Loudly.  Consistently.  And without rancor … or maybe a little rancor.

I have no idea how this issue will be solved, or how to keep things like companies telling patients what’s best from becoming standard fare, but sitting idly doesn’t do a damn thing.  Patients who are impacted by the United Healthcare / Medtronic thing need to tell their stories, both logging them here at DPAC and sending them directly to UHC and Medtronic.  Stories shouldn’t be limited to this specific issue, though.  Access to devices that work for us matters.  Access to insulin matters.  Access to proper dental care and eye care matters.  OUR HEALTH MATTERS, and “you shouldn’t have to decide between medical care and rent.”

What do you want to see changed?  Why does it matter to you?  And how will you let people in “positions of power” know that access matters?

We are at the center of healthcare.  That’s what these different groups and movements keep asserting.  Embrace that.  Without action, the “wealthcare system” will eat us alive.  Do something.  Suggest something.  Raise productive hell.  Raise your voice for yourself and for those who can’t.


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