A Patient Experience with COVID Testing

Hi everyone,

A colleague and patient Andrea shared the following story of her experience being isolated and tested for COVID-19.  Many thanks to Andrea for sharing this with us.  I am sure I speak for everyone in wishing Andrea a quick recovery from the symptoms that resulted in her testing for COVID.  Regards, Mary

Here is Andrea’s story:

48 hours on Lunder 7: Covid-19 RuleOut-Unit at Mass General

Friday morning, every bed in Mass General Hospital’s Lunder Neuroscience Studies floor was occupied. By nightfall, patients in the unit who’d been hospitalized for strokes, Lou Gehrig’s disease, and fibromyalgia were moved, en masse, together with their neurologists, to another floor.  And then a group of general medicine practitioners moved in to await its new crop of patients.  This unit—Lunder 7—is now the 32 room Covid-Rule-Out floor.  Patients are admitted here as a kind of 48 hour weigh station. They, actually WE are here because our test results are pending and are either too sick to go home or have underlying conditions along with Covid-like symptoms. I have been living with Cholangiocarcinoma, a rare hepatobiliary cancer, for close to four years now. My current symptoms—shortness of breath, cough, aches—coupled with the oral clinical trial drug I take daily to keep my cancer stable (pemigatinib) has landed me my very own isolation room on Lunder 7.

The unit is in the shape of a figure 8. While the orderly wheeled me around past room after empty rule, I finally called out to her— This is a pandemic! Just where is everyone? She said, they’ll be comin’. We just opened the unit. You just happen to be on of its very first patients.

24 hours in, there were 10 of us. Today, there are many more. And patients’ test results have begun to trickle in. If the test is negative and the patient needs further hospitalization to address non-covid issues, they are moved to ICU or another unit. If the test is positive and the patient is well enough to recover at home under self-isolation, patients are quickly being discharged to make room for someone sicker.

For now, each nurse is assigned just one patient. Nurses are strongly discouraged from entering the patient rooms any more than they absolutely need to. The nurses are each assigned one mask per shift. While the nurse took my vitals, she said, Before tonight, if I used the same mask more than one time, I’d get fired. Other than taking vitals, the nurses are mostly attending meeting after meeting to keep up with the almost hourly changes in information and protocol.

ruled out

I have now had an ultrasound, a chest Xray, a chest CT, and countless blood panels. All tests save 2 are in. They have ruled out 3 types of pneumonia, Influenza A and B, blood clots, Sars, and all the other scary conditions anyone around here could think of to test me for. They’ve also established that my cancer remains stable and well under control. In fact, the chest CT they performed showed my ever-present lung lesions that tend to wax and wane a bit from scan to scan are showing at the moment to have decreased in size.

2 tests pending

I’m still convinced I don’t have the virus. Denial? Coping mechanism? Maybe. But I have another theory that takes into account a narrative of symptoms that stretches back to December.

I’ve been living in Arizona for 20 years. And Arizona is the hotbed of Coccidiodomycosis, or Valley Fever. It’s a fungus that lives in the soil. On a windy day, the spores can be inhaled, causing an infection whose symptoms are almost identical to those of Covid-19. Unlike the Corona Virus, Valley Fever is treatable with anti-fungal medication. Most people who live in AZ have a friend, a colleague, a child, or a pet who has at one point been treated for it.

My friend Jodi, who works at Phoenix Children’s Hospital, once told me that in medical school, she was trained that, When you hear hoofbeats, you must look for horses-not zebras. In Arizona, when patients have on-going respiratory issues coupled with back and body aches and a rash (all of which I’ve had on and off for months), Valley Fever is generally the horse everyone looks for.

I learned that that MGH is one of only 3 hospitals in the country that are currently able to enroll patients in clinical trials for Covid treatment. Earlier this year, MGH literally wrote the book on Covid-19 (a handbook on how to prepare based on lessons learned from China). As cases of the virus continue to grow and multiply here in Boston as well as all over the U.S., it’s almost impossible to hear anything else over Covid’s noisy hoofbeats.

I was tested for Covid on Friday around 2pm. We’re now just about at the 48 hour mark. But I am not holding my breath. Yes, they are in desperate need for more beds. Desperate need for these tests to come back so they can move us on out. But staff must contend with a number of factors that slow the process down: ever-changing protocols, increasing numbers of people coming in to be tested, and limited supplies to name just a few of them.

Nurses and patients lonely hearts club

In this unit, all the rooms are fitted with a giant glass door. Normally, I’d find it unsettling but in this case, after close to 48 hours of isolation, I’m happy to be the fish in the glass bowl. The hallway is mostly empty anyway, save for a nurse here and there suiting up or removing gear. The nurses are lonely too. They have all told me over and over—-mostly on the phone, through the glass, or in the rare times they enter the room, through mostly fogged up face shields and googles— that they are unused to spending so little time with their patients. Every so often, one of them will come up to the glass to smile and wave before reaching out for one more squirt from the dispenser of hand sanitizer by the wall.

I am staying calm. Well rested. Well hydrated. Well fed. And I am rarely talking on the phone. This combination seems to be the best medicine for keeping my breathing from becoming labored and my coughing from re-surfacing. For now, as I await my test results, I’m content to sit by the window of Lunder 734 looking out my wall of windows as the sun sets on the Boston skyline.

Andrea Parrella is a patient and research advocate for The Cholangiocarcinoma Foundation.