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The esophageal stent placed on Wednesday 04/22 was doing a fine job of blocking esophagus cancer warrior Diann Pearson’s bronchoesophageal fistula, mitigating her coughing fits and allowing her to swallow liquids until Thursday 05/07. From then on, swallowing became increasingly difficult and slowly but surely her dreaded 24/7 cough began to return. By Mothers Day Sunday morning 05/10, we were convinced we had a serious problem and messaged her doctors at Jackson Memorial Hospital (JMH) accordingly:
I am writing to inform you that the esophageal stent you implanted in Diann Pearson is not working. By “not working” I mean specifically:
1. She can no longer swallow anything – Ensure, juice, tea, water, anything – without gagging.
2. Though not nearly as frequent or severe as before – yet – her persistent cough is returning.
We plan to come to the Jackson Memorial Hospital Pharmacy on Monday morning to try one more time to pick up a prescription for nebulizer solution written two weeks ago. While we are there, we would like for you or your designate to at least examine Diann. If that can be arranged WITHOUT another 12- to 25-hour stay in the frigid JMH ER without nutrition or hydration, we would greatly appreciate it.
Our plan was to take our beach scooter to JMH at 9:00am the next morning, but after yet another sleepless night around 3:00am Diann starting vomiting profusely. It was probably just from the chemo, but the simultaneous gagging and coughing was more than she could bear. So we packed a bag, grabbed a bucket, called a cab and headed once more to the ER…
When we arrived at the JMH Emergency Room around 6:00am Monday 05/11, it was almost devoid of patients. Despite that, it took me a few minutes to get the attention of someone behind the glass, and several minutes more to convince them that the sole woman in the waiting room slumped over, coughing and vomiting into a bucket was seriously ill. Finally they opened the door and escorted us to a triage gurney. There we waited, and waited, and waited for a nurses’ huddle 15 feet away to break. I thought someone would come attend to Diann as soon as the shift-change summit concluded, but I thought wrong…
I was just about to get loud when I saw a woman walk in with Director of Emergency…something stitched on her heavily-starched white lab coat. I got in her face and asked point blank when we would at least be given the opportunity to tell someone what was wrong with Diann. Without responding she marched over and said something to a triage nurse seated and staring at a computer screen, who then immediately jumped up and whisked over to us. I explained to the nurse that Diann had stage IV esophageal cancer, that she had a stent in her esophagus blocking a bronchoesophageal fistula, and that we feared the stent had slipped or was leaking. She took a quick look into our bucket of phlegm and vomit, then without asking questions rolled us straightaway into ER-C.
In our previous ER visits triage went swiftly and diagnosis took forever, but this time it was the other way around: Within minutes, the doctor in charge (Scott?) spoke with us and ordered an X-ray. An hour or so later he ordered a CT scan, which among other things identified “a small disruption of the left lateral wall of the esophagus … worrisome for perforation.” That led to the scheduling of an endoscopy for later that afternoon.
From our pre-op exchanges with gastroenterologists Erin Perlini, Fernando Calmet and Afonso Ribeiro, we were led to believe that the goal of the endoscopy would be to find out why Diann’s ability to swallow was gone and her cough had returned – and if possible, fix the problem. After the late afternoon procedure, however, no GI doctors were available to tell us anything – and all a seasoned recovery nurse named Pat could say was the endoscopy report indicated that Dr. Deshpande et al made no mistakes in placing the stent, and that Diann’s problems must be rooted in “reflux” or elsewhere. Whether that means an unstated objective of the endoscopy was CYA is hard to say.
Anyway… As with her previous endoscopy, during and immediately after the procedure Diann’s EKG picked up some irregularity in her heartbeat (arrhythmia). And as before, we told the concerned nurse that for Diann it was regular to have an irregular heartbeat. Nevertheless, she followed protocol and reported the arrhythmia to some unknown teledoctor du jour, who in turn followed protocol and ordered Diann be sent to “Telemetry” where her heartbeat could be monitored continuously. Fearing that the focus of treatment might shift away from her cough more so than some arrythmia that might not even be a problem, we refused and demanded they simply return us to South Wing 614B and let Diann get some rest. The compassionate nurse Pat understood our priorities, and made that happen.
Tuesday morning 05/12 came and went with Diann’s coughing and body pains unabated – and no word from any doctor about next steps. Midafternoon we finally received our first visit from yet another rotating JMH hospitalist empowered to make life-or-death decisions about the care of patients they know only from online medical records that are often incorrect, always incomplete, and easily misconstrued. This time we drew Guillermo Samper MD, who immediately parroted the position that “reflux” was the problem and began describing his gastritis treatment regimen. I interrupted to point out they tried to sell us on “reflux” before, and a barium swallow proved that instead the problem was a fistula. After a brief acrimonious exchange, he agreed to order another barium swallow/esophagram. I then brought to his attention Diann had received no enteral feeding for almost 36 hours, and he said she’d have to wait for nutrition until after the barium swallow.
Tuesday evening then Wednesday morning 05/13 came and went with no one showing up from Transport to take Diann for her esophagram. When GI doctor Fernando Calmet came to visit I asked about the delay, and he told me Diann’s WBC (white blood cell count) was too low to perform the procedure. I replied that starving her for almost 3 days was not likely to raise her WBC. He acted surprised and ordered her enteral feeding resume immediately. Turns out her feeding tube is inserted in her duodenum – not her actual stomach – so enteral feeding would have no impact on her barium swallow test. That means that Diann had needlessly gone without nutrition for over 44 hours, simply due to the limitations of doctoring from a distance…
Around 4:00am Thursday morning 05/14 we were awakened by a tech who came to draw blood to test Diann’s WBC. At 10:00am we were told it was 1.6, and at noon we were told that was high enough to schedule a barium swallow. Finally at 8:30am the next morning, Friday 05/15, the barium swallow we’d been waiting for since Tuesday – with Diann suffering from constant coughing and pain the entire time – was finally performed.
Along with the physicians most familiar with Diann’s case, I was surprised but not relieved to read in the esophagram report Friday afternoon that there was “no contrast seen in the trachea or bronchi.” That meant they still did not know the cause of Diann’s cough. With my urging, Dr. Samper agreed we should get a look from the other side by accelerating the bronchoscopy the gastroenterologists had suggested on Monday. Consequently, pulmonary specialist Lesley Farquharson MD came by for an introductory consultation in that regard late Friday evening. The next morning she returned with her superior Elio Donna MD, who approved the scheduling of the bronchoscopy for Monday morning 05/18.
I’d like to end this update here. I’d like to, but I can’t…
Every day this week, some JMH doctor expressed concern about Diann’s alleged* arrhythmia and recommended she be transferred to “Telemetry” where her heartbeat could be electronically monitored continuously. And every day this week, we refused for one reason: We did not want the focus of her treatment shifted away from curing her cough. On Saturday 05/16, however, we decided that perhaps discretion was the better part of valor and gave in to their demands.
“Telemetry” at JMH was not the hi-tech healthcare haven I had envisioned: Its West Wing 5th Floor location is dark and uninviting, and in her assigned room 521 my shoes stuck to the floor, the musty “sleeper” chair needed cleaning, the nightstand was in pieces and the crystal of the wall clock was shattered. Think Twilight Zone… Adjectives like depressing, disturbing and disgusting would all be fitting.
Fortunately (for lack of a better word) Diann’s sentence in “Telemetry” was brief, as late Saturday evening she was transferred to South Wing 4th Floor MICU for a transfusion to bolster her blood and an amiodarone treatment for her alleged arrhythmia. Hopefully that will unharmfully constrain her natural heart rhythms to a range that keeps her off the radars of distant telemetry-dependent doctors she doesn’t know and who don’t know her. And once this EKG-instigated cardio detour is behind us, Diann would like to offer to all concerned a simple plan for progressing her cancer treatment:
1. FIX MY COUGH.
2. NUMB MY PAIN.
3. SEND ME HOME.
Pray for Diann,
* I say “alleged” because as of this writing I have been provided with no information that suggests the “arrhythmia” is anything other than what an anesthesiologist called the “gallup” in her normal heartbeat.