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Last week one of you politely advised that our updates on the condition of esophageal cancer (EC) combatant Diann Pearson tend to be a bit wordy. So for those of you in a rush to return to liking friends on Fakebook, here’s the last page of the novel:
Diann Pearson has a bronchoesophageal fistula (BEF).
For those interested, here’s the rest of the book:
The essence of our update last Saturday was that if the doctors at Jackson Memorial Hospital (JMH) didn’t find a remedy soon, Diann might be more likely to succumb to her cough than to the cancer. Her cough persisted as none of the prescriptions comprising their “multifactorial” solution were making any positive difference by the time we returned to the JMH ACC Infusion Center – aka the Rock Horror Beauty Parlor – early Monday morning for her third chemo treatment. Like the others, this torture session took several pain-filled hours to complete. Unlike the others, however, this time we refused morphine and requested Dilaudid instead. That – plus the compassionate care provided by JMH nurses EJ (Edith Perez), Kathy and Miriam – significantly reduced her suffering without leaving her bug-eyed and wired for two days.
After her daily radiation treatment the following morning, radiation oncologist Rafael Yechieli responded to our complaint about her endless coughing by saying he suspected she may have a “tracheo-esophageal fistula” and that he would suggest that possibility to her JMH treatment team. I had never heard of “TEF” before, but after looking it up on the Web I agreed with his suspicion:
Note that the symptoms described are a perfect match for what Diann has been suffering for weeks:
“Fistulas are actually holes that develop in the area between the windpipe and the esophagus. The holes allow food and drink to escape down your windpipe and, eventually, into your lungs. This can cause symptoms of choking, gagging, and coughing while swallowing. Tracheo-esophageal fistulas can be managed with surgery or by placing a stent, a small tube that covers the fistulas, in the esophagus to keep food out of the windpipe.”
Dr. Yechieli said he’d get back with us in a few days, but instead we got back to him. On Wednesday morning we faxed this SOS:
SOS RE DIANN PEARSON (DOB 11/27/1960)
To Dr. Desai / Dr. Yechieli / Dr. Aquino:
If you do not do something to effectively remedy Diann Pearson’s 24/7 cough SOON I fear something terrible will happen. She’s telling you the steroids are helping but what she should be saying is she HOPES they are helping. So far they are NOT: Last night was our worst yet. She’s coughing up buckets of phlegm, and with each cough she says she wets herself. I’m not worried about her pee – but I am worried about her physical, mental and emotional ability to persist. PLEASE HELP HER.
At first Dr. Yechieli suggested we go (again) to the Emergency Room, but later decided instead to schedule an appointment for Diann with the JMH ENT (Ear/Nose/Throat) Department the next morning to determine if in fact a fistula was present.
The main elevators at JMH ACC East were not working when we arrived there early Thursday morning, and getting Diann and her enteral feeding rig up to the 3rd floor was going to be a challenge. Fortunately, however, an alert and caring receptionist saw our situation and rushed up to escort us to the service elevator in the back. On the way we stopped to “register” with a financial services clerk who told us Molina Healthcare had not given their approval for this visit. I quickly informed the clerk that would be her problem to solve and not ours, and we continued on to the elevator. It took us right into the heart of JMH ENT, where Diann was well-attended until the first doctor arrived around 9:00am.
When he joined us in the exam room, the young doctor expressed wonder as to why we’d been sent there to detect a tracheo-esophageal fistula when his scope had no such capability – but he said he’d “have a look” anyway. We warned him that putting anything down Diann’s throat would have repercussions, but he proceeded with preparing to insert his scope anyway by spraying something up her nostril. Sure enough, as soon as the spray drained down to her throat, she went into a major coughing fit that took oxygen to recover from. She was also gagging and, although she can’t really vomit, managed to spit up maybe a teaspoon of Ensure – the only thing in her stomach.
The young doctor left and returned with an older doctor who quickly surmised that something was seriously wrong and she should be hospitalized and properly tested with x-rays and a barium swallow. The ENT nurse then brought up a wheelchair to take us down to the first floor, where oncologist fellow Amrita Desai was supposed to be coordinating her admission and testing.
The moment we rolled Diann into her exam room, Dr. Desai wheeled around and told us that (a) the ENT scope showed Diann did NOT have a fistula and that (b) reflux aspiration (Ensure from her enteral feedings being coughed up and then going down her windpipe) was causing the coughing and placing her at risk for aspiration pneumonia. When I took exception on both points, Dr. Desai asked me to leave the room. I did – but not for long…
It is written that near the end of the Napoleonic Wars after the Battle of Waterloo, the residents of London went into a panic after receiving a telegram saying “WELLINGTON DEFEATED”. Turns out the last two words of the original message, “THE FRENCH”, were lost in transmission, which of course reversed its meaning. I believe the same thing happened here – that the ENT doctor’s report began with something like “I cannot detect a tracheo-esophageal fistula” and its conclusion “using this scope” was lost in transmission.
Anyway, I invited myself back into the exam room with Diann and Dr. Desai. Soon thereafter her attending (the older doctor supervising her) joined us, and a debate about who was making decisions for Diann and whether I had any business being there ensued. Diann rose up and rasped out that SHE was making the decisions and that I was there to speak for her. I took the ball from there and assured them I was not leaving the room until they guaranteed me Diann would be properly tested for a fistula. The doctors ultimately agreed, and in short order two oncology nurses wheeled us across the street and walked us through ER admissions at around noon.
Several hours passed before they rolled Diann to Radiology for two chest x-rays – which the ER doctor told us showed no evidence of pneumonia. Several hours more passed before they rolled Diann to Flouroscopy for an esophagram/barium swallow – using a very small amount to minimize the resultant coughing fit. As he was leaving, I cornered the seasoned radiologist who did the test and he told me “that young lady has significant problems”. And after we returned to our frigid holding cell in ER-C Room 7, the ER doctor popped in and simply said “She has a fistula. We’re going to admit her now.”
At JMH, of course, “now” can mean “within 24 hours”: At around 3:00am Friday morning – after 15 hours of waiting in ER – a transport tech finally showed up to wheel Diann to South Wing Room 614B with me and her enteral feeding rig in tow. Nurse Green checked her in and expressed concern about her being hooked up to the feeding pump we’d brought from home. I told her we’d be happy to disconnect it as soon as JMH replaced it with an equivalent nutrition and hydration solution, and recommended she speak with the JMH nutritionist named Maria who did a great job of providing such solutions for Diann in the past.
Later that morning we were visited separately by the floor charge nurse Kemi and a lady doctor Amoros who we didn’t know and who was nice enough but knew nothing about Diann. They both expressed concern about Diann being on her feeding pump while facing the perceived threat of aspiration pneumonia. I reminded them of the very real threats of malnutrition and dehydration if we took her off – and that more EC patients are lost to malnutrition than to the cancer itself.
Again an effort was made by someone to remove me from the equation: A JMH social worker showed up to ask if I had legal authority to speak for Diann. I assured her I did. She asked to see the paperwork, as JMH had none on file. I told her we were not required to file the paperwork with JMH unless and until we chose to do so. Diann again rose up and rasped that SHE made her own decisions and that one of those decisions was that I would be her spokesman. The social worker said “OK. We are here for the patients!” and that ended that – or so I thought…
A few minutes later charge nurse Kemi came in to again urge me to stop providing Diann with food and water, and just I was about to reply our nutritionist Maria Vallasciani waltzed in the door. I smiled and told Kemi not to worry because the cavalry had arrived, and so she left. Maria and I then discussed Diann’s nutrition and hydration requirements, and the trade-offs and gotchas re fistula surgery and aspiration pneumonia. She assured me she had things well in hand, and I trusted her. So at 10:30am Friday (4/17/2015), I took Diann Pearson off our feeding pump and placed responsibility for her nutrition and hydration solely in the hands of Jackson Memorial Hospital.
Perhaps unaware that our nutrition/hydration issues had been resolved (for the moment), a short while later a colorfully contrasting group of representatives from six different JMH departments marched in the room for what I suspect was intended to be some type of “intervention”. Someone named Alexis (I think) served as their spokeswoman, but before she could complete her scripted introduction Diann reached up and grabbed my arm and rasped as loudly as she could “I don’t know what you’re here for, but I make my own decisions and I’ve decided he’s staying and speaking for me. If you don’t like that, you can all leave right now!”
Somewhat taken aback, the spokeswoman quickly shifted from intervention intro to effusive apology and then asked that I air our concerns and grievances. I did – stating pretty much what I’ve shared with you in this update. No objection or arguments were raised. The spokeswoman made a polite closing remark, and then the gang of six backpeddled out the door.
A couple of hours later, Dr. Desai dropped in and conceded our suspicions about the fistula were correct. She was soon joined by Dr. Yechieli, who explained that technically her TEF is a BEF (bronchoesophageal fistula) because the point of fusion is located below her trachea. Learn more here:
Both doctors had much more to say, but it can be summarized by saying they don’t know what to do about this yet, but they’re suspending Diann’s chemotherapy and radiation treatments until the fistula issue is resolved. They also told us that JMH CT (cardiothoracic) and GI (gastrointestinal) surgeons would be brought on board and coming by later to introduce themselves.
Late Friday evening, two medical students came by saying they represented CT surgery, and that they’d come to tell us their higher-ups would be looking at options for Diann next week. No emissaries from GI surgery ever arrived.
Pray for Diann,