Tuesday, February 3, 2015


In the early days of my treatment for breast cancer, I remember the very first time I was escorted to the chemo chair.  My IV line was opened in the clinician's suite where they drew my blood to make sure my counts were acceptable to begin treatment. I walked the long hallway, through the double doors in a state of sheer terror.  I was about to be poisoned.  Horror stories were swirling in my head.

Would I begin to vomit the second the infusion began?  What about my hair?  Despite the fact that I call myself a "chemo fraud" because, as my oncologist informed me, "It is likely you will NOT lose your hair," did I really believe him?  Was my hair going to begin shedding on the back of the recliner within the first hour?  Yes, these thoughts were racing around my brain. Little did I realize those were the least important things I should be worrying about in that particular moment.

Two nurses approached me, all gowned up.  Vials of poison were in some sort of container.  They had my chart, the drugs, my wristband and me and between the both of them, they were about to begin a ritual that would become soon become The Welcome Routine.  After asking me to recite my name and date of birth to cross check with my wrist, they began the process of checking the vials and the orders written on the chart by the doctor.  Patient Safety.  Are we about to dispense the proper drugs to the proper patient in the proper dose?

I'd say this is a rather important matter.  MSKCC doesn't mess around when it comes to things like patient safety.   I know they've been ranked in the number one spot many times in the patient safety category by US News and World Report.  (This is the place where, as a good writer, I should be linking back to cite that but frankly, I'm on a writing roll and I know I already blogged about this including all the links, probably more than once.)

Now, I'm going to violate the HIPAA rights of an unnamed family member.  Back in October, you may recall (or not), I had a rather horrific experience in a hospital ICU with a loved one who was diagnosed with severe acute pancreatitis.  Caused by familial hypertriglyceridemia, we are still in the process of getting to the PROPER endocrinologist for the best maintenance protocol.  Diet and exercise have both been addressed.  Medication, in this case, is essential.  There simply is no way to control this without medication.

The immediate issue in October was stopping anything from causing damage to the pancreas.  The repair?  In addition to not allowing ANYTHING (not even water) from passing through the pancreas, an IV insulin drip was part of the array of bags hanging from the bedside pole.  Tests revealed glucose numbers and something called an A1C in the mild diabetes range. Immediately, my loved one was labeled as diabetic.  Indeed, the biggest part of his discharge was instructions from a nutritionist about a diabetic diet followed by the presentation of a glucose monitoring meter, a couple of test strips, some lancets to draw the blood, a smidge of insulin vials, the needles to administer the insulin and a prescription to get the the pharmacy STAT to have these items in our home.

Diabetes is a big ticket item in the medical world.  It's a money maker when you look at the necessary supplies and the number of times all of these items were to be used in the course of a day.  Except, the primary diagnosis was NOT diabetes. And yet, that is at the very top of the list of medical issues.  Houston, we have a problem.

Less than two weeks ago, we were back in the hospital.  A different hospital.  An in network hospital because, unlike October when this last emergency occurred, we were close to home.  I knew where to go.  I also knew it was a kidney stone.  I diagnosed it.

"Is the pain the same as the last time."

"No.  I can't explain it but it seems to be more painful and it's not exactly in the same place."

"Where is it?"

"Well, it seems to be in my back, too...... "
I did what I do best.  Turned to the internet with the idea already in my mind.  Saw some of the causes for kidney stones, realized one of the doctors had put him on mega doses of Vitamin D which he was taking for nearly two months, saw excessive Vitamin D could cause a stone to form, pulled out all the of blood work I had, looked at the calcium numbers, saw those were all above the normal range and climbing on each subsequent blood test, never saw ONE test for Vitamin D levels, cursed the endocrinologist, remember his brother had an episode with a kidney stone a few years ago, saw that was another risk factor, told him it was a kidney stone, knew this was going to be one painful round of crap, and ultimately, as is always the case, it was nearly midnight when we got in the car to head to the emergency room.

The ER doctor punched him in the kidney, he jumped off the table and ordered a CT scan.  I asked the doctor if this imaging to confirm could not be achieved by ultrasound.

"We can track the movement of a stone with ultrasound, but initial diagnosis is made using CT."

I asked the doctor to take a good look at the guy on the table.  Didn't he see the g'dman glow emanating from his body.  This man has been exposed to more radiation since October and the last thing I wanted to see was MORE radiation.  Countless chest x-rays, at least 3 or 4 prior CT scans and that was only what I saw.  I deferred because, armed with no solid medical evidence to the contrary, I wasn't going to debate the doctor.  The learned curve is steep during emergency room care and a subsequent emergency admission when the diagnosis is something unfamiliar.  But, it didn't take me long to find this article, published just FOUR months ago in the New England Journal of Medicine.  The headline screamed:


I wanted to go back into the ER with my phone in tow and shove it into the face of the doctor who ordered the CT scan but, since the scan DID show the pancreas was "unaffected and unremarkable," I shut my mouth.  We did get valuable information to compare with the last scan in November which talked about all sorts of things going on in and around the pancreas. However, in the scheme of this particular admission, it was UNNECESSARY radiation and the question or suggestion of the "ePatient" was summarily dismissed.  Like I said, steep learning curve.  And medically costly both is dollars and in the dangers of too much radiation (which, by the way, was also dismissed, "It's the cumulative lifetime radiation...."  Ummm yeah, I know... but if we can accomplish the goal WITHOUT adding to that accumulation, can we at least take this into consideration before ordering the damn test?)

Meanwhile, back on the floor, the nurses are reviewing the wrist band and the notes and I hear them saying something about being diabetic.  I interjected.

"He's NOT diabetic.  He has familial hypertriglyceridemia, the diabetes is an incidental diagnosis that may well have resolved already."

But the chart is king, the patient agreed and I'm, once again, in the unenviable position of being the person who really understands what's going on with this particular patient, and I'm being ignored.  Insulin was being administered each evening in accordance with the medication discharge instructions from the prior hospitalization which were continued by that aforementioned cursed endocrinologist.

Once again, I did 12-14 hour bedside stints, leaving only after shift changes to make sure I was comfortable that the night nurse was fully familiar with the the patient and the ongoing care.  Upon my return one morning, I was told,

"Late last night, I got up and I couldn't see.  It was so weird.  EVERYTHING was so blurry.  Then I felt like I was hallucinating and I thought I was going to pass out.  I called the nurse and it turns out my sugar dropped."

"Yeah, turns out my sugar was like 40."

I'm doing a slow boil, trying to calm myself down.  Those are dangerous numbers.  He was going into hypoglycemic shock.  To my knowledge, despite administering insulin each night, no one checked his sugar before giving him the injection.  They checked the sugar when he was ready to pass out and in a flurry of activity, brought him orange juice, graham crackers and whatever else....  I wasn't there.  I was getting this second hand story from the guy who was on the verge of slipping into a diabetic coma and the day nurse who was, yes, reading from the chart.

The point.  This could have had disastrous consequences and why?  Communication.  I call this one an EPIC FAIL in the patient safety initiative thing.  Reading wristbands and asking for birth dates is a great way to confirm the right patient is in front of you before scanning the bar code with the laser but it's time to understand that LISTENING is the most important part of medicine.  Sometimes the patient &/or caregiver has something really important to share.

And just sometimes, we DO understand what's going on and sometimes, we may even understand it better than a new doctor who is just meeting a patient for the first time.  I'm stand with firm determination beside the Patient Safety Movement Foundation which had a summit just a few weeks ago.  Thank you, Michael Millenson for the Forbes article about Supercharging Patient Safety.  It was the impetus for me bringing just one more patient safety story to the forefront.

The problem, once again..... I have no letters after my name.  I didn't start a foundation.  I only have real world stories to share but it seems most of these patient centered initiatives are not looking for "expert" patients, they are looking for "professional" patients and apparently, there is a difference.

Like it?  Share it!


  1. dear Annemarie,

    you may not have letters behind your name, nor have stared a foundation -but dammit, girl, you are one helluva patient advocate! telling your story in real time, about real events that came so close to causing something catastrophic that could lead to death is so powerful. it brings to the forefront the issue of the art, THE ART of listening to both the patient and their advocate. and by the way, after 30 years applying the most staunch advocacy for hospice patients many who were dying in pain and unable to speak up, I can assure you that when clinicians tune out from the info being given by the patient and or advocate, especially during what could become a crisis, and "read from the chart", they most likely have already begun to formulate their own agenda - and it is comprised with three words - cover their ass. this is an excellent post and one I hope all who read it will regard it as a cautionary tale. and good job finding the article in the NEJOM about CT vs ultrasound. "standards of care" are meaningless in many cases simply because studies and their findings have not made their way to those who should be in the know. bucking some so called "standards of care", can greatly enhance quality of life as well as cutting healthcare costs; I refused recommended SOC's twice, once with the scope of radiation post MBC chemo and surgery, and a similar scenario with pelvic radiation for uterine cancer because I knew and understood the life long ramifications that would have severely affected my QOL.

    much love,

    Karen oooxooo

    1. Oh Karen how I miss you!! I love your comments (but you already knew that) and I love the validation and hearing the things that you experienced professionally. As for the personal experiences, I'm empowered by them--I don't love those too much because I HATE that you have had to go through any of it.

      Much Love to YOU my dear friend,


Something to add? Do Share!