Last night I sat in the over-stuffed chair in the master bedroom where I have been installed since returning home from the hospital. I am quarantined from my family, I’m exhausted and, if I’m being honest, feeling a bit sorry for myself, especially in the evenings when I can hear them gathered for dinner. This too shall pass, I told myself, rubbing my eyes that ached and no longer focused on the book I was reading. I needed rest to recover from this but I couldn’t seem to will my body up from the chair and into bed.
And then it dawned on me: I was afraid to go to sleep.
I looked at the bed, knowing my husband was tossing and turning in my office downstairs on a terrible mattress, and still, the fear of lying prone, closing my eyes and, at some point in the middle of the night, when I’m most vulnerable, having my lungs just stop working paralyzed me.
JUST THE FLU
My husband, teenage boys and I all got sick the end of March. But we had such differing and strange variations of either a cold or the flu that we didn’t really think was COVID. Son Frank and I had chills and fever but slept it off in two days. Son Kyle, just an annoying cold but no fever. Dave got the stomach flu. I really didn’t think we actually had COVID-19 but a couple weeks later, out of curiosity, mostly, Dave went in for the antibodies test and it came back positive, with the assurance of 99% accuracy.
I was dubious. Everything I read said nothing was accurate about this virus testing but it’s what we’ve got. About this time, I started getting low-grade fevers. Since no doctors were seeing patients, I did a couple telehealth calls where we determined I had had the flu or probably COVID-19 because of Dave’s test results, and my doctor started treating me for a sinus infection, which often follows on the heels of a viral infection.
TELEHEALTH…PROS AND CONS
I’ve had many sinus infections in my life; this didn’t feel like one. But I’m not a doctor, so antibiotics and a couple days of steroids sounded like a good proactive solution to really knock it out and get rid of the pesky dry cough I’d had for a few weeks.
The drugs didn’t touch it. Sleep helped and I tried to keep up my workouts and long walks, though now low-grade fevers were a constant feature and I was getting too tired to bike or walk the usual routes I’d always done without a second thought.
Another telehealth call and we decided to try a big dose of prednisone–ten days–with another antibiotic and just kick this thing once and for all. I felt great on the steroids, not quite my old self, but I had energy. The second I finished, however, I was back to square one, and getting worse.
FURTHER COMPLICATIONS…DID I MENTION I HAVE MS?
More than a month had passed since I had the flu and I still felt like my body was fighting an infection. Fever, I’m told, is a good sign so I took it as such. But what was really nagging at me was the fact that I have multiple sclerosis (MS). I was diagnosed five years ago and got on an immunosuppressant drug, a once a month infusion, that I stayed on for the next four years. It held everything at bay, but there was one pretty big side effect: death if I contracted the John Cunningham (JC) virus. I was told, it’s not a matter of if I get the virus but when. So, when the results came back positive in March this year, that I did have the virus in my system, I had to get off the drug immediately.
I switched to a new drug given every six months through infusion. This drug also suppresses my immunity but the JC virus wouldn’t be an issue. I got the first dose on March 17. We all got sick a week later. The only difference: my family recovered fully.
As the fevers escalated, I started to wonder if I was reacting to the new drug, which seemed unlikely but worth looking into. Neurology checked with the drug manufacturer but nothing like this had ever been reported. Any adverse reaction would have happened when the drug was administered.
When the next big fever came on, it was after clinic hours so I went to Urgent Care where they did a COVID antibodies test (we were still under the assumption that we all had it based on Dave’s positive antibodies test). When that test came back negative the next day, I was told to get the COVID-19 nasal test. That test came back negative also. So, not COVID-19. Good…but what was it?
We hit the fevers with a new round of two antibiotics and scheduled an actual appointment with an ear, nose, throat (ENT) doctor who examined me and confirmed this was definitely not a sinus infection. Because of the consistent cough, she walked me over to X-ray to get a look at my lungs. Later that day I got a call: there was an opacity in my upper right lung.
“Don’t panic,” the ENT calmly advised, “could be nothing. Let’s get you in for a CT scan next week.” You know those days between a weird diagnosis and the next test? You know how they drag on and nag at you and you do everything you can not to google “lung opacity”?
PNEUMONIA
The CT scan the following week showed I had pneumonia, something I’d never had before. No wonder I was febrile, coughing and exhausted. Since the last round of antibiotics didn’t work, we figured this was a virus, albeit not COVID since I tested negative for that, and that I needed rest to let my body recover. There was more talk of the MS drug making it harder on my body and that this would simply take time.
Soon the fevers became more intense, climbing to 105 and above, and Tylenol stopped helping. Worse, I couldn’t catch my breath. I’d now been sick for more than two months. Finally, Dave, awaken by the desperate sound of my inability to take in a deep breathe, pulled me out of bed and drove me to the ER.
I want to stop here and sing the praises of the staff at Highlands Ranch Hospital: what an amazing crew of thoughtful, dedicated people. Doctor Jessica Paisley was the attending. She ordered another X-ray, which they did with this fabulous portable contraption painted like a giraffe. Then another COVID-19 test–once again, negative–and a new CT scan and lots of blood work.
The CT scan was most troubling: the pneumonia was expanding and migrating and was much worse in my left lung.
There are only so many tests that can be done in an ER and Dr. Paisley did all she could. She also put in calls to infectious disease and worked on getting me appointments for the next day. And she said I needed to see a pulmonologist ASAP. Because I was breathing fine again and my vitals were solid, she sent me home but told me to get back if I was having any trouble breathing.
GUARDIAN ANGELS
Here’s where more amazing people started showing up like guardian angels. My good friend Dr. Tom Svinarich went over my blood work and raised some serious red flags about the level of inflammation in my body. He made out a list of tests I needed to have done and told me to send him the results. Then, Dr. Tom Smith, a pediatric oncologist at Children’s Hospital, heard about the advancing pneumonia and reached out. Dr. Smith takes my cycling class at the Littleton Y, he’s a crack up but I knew a very intelligent and dedicated doctor. He raised the alarm bells higher, but this time he started calling around and demanding I be seen. He talked to a good friend of his, one of the most respected infectious disease doctors in the state, who said I needed something called a bronchoscopy, immediately.
Dr. Smith was so worried he told me that if I didn’t get in with a pulmonologist for this procedure he would admit me to the hospital.
I got an appoint for the next day but during the night, I spiked a major fever and woke gasping for air. The crazy thing: I was so tired and scared that I actually argued with my husband about getting dressed and going to the ER again.
“I have an appointment with a pomologist at 9:00 today,” I whined.
“In four hours,” he countered, maneuvering me into yoga pants. “You can’t breathe now.”
“Fine,” I said, indignant and on the verge of tears. “But I’m not going until you comb my hair.”
I was terrified. What if they intubated me? People don’t come out of this when it gets to that point.
Dave remained the rock. He combed my hair and within 10 minutes we were back in the ER. It was shift change, nearing 7:00 AM. The doctor on call went over my charts from the day before and reiterated that Dr. Paisley had done everything she could–did I want to be admitted? Dave and I conferred and agreed: it was time. Beyond time.
ADMIT IT: YOU’RE IN BAD SHAPE
Soon after, a pulmonologist came to my room and explained the bronchoscopy procedure–something I’d asked for on my second trip to the ER (thank you Dr. Smith for supplying that word, which became the obvious next step as soon as I uttered it). The pulmonologist said he was working on getting an anesthesiologist and then we’d start the procedure, probably around 1:00 that afternoon. By 12:45 PM, I was in the lab meeting the anesthesiologist.
I woke after the procedure actually feeling buoyed–we were getting somewhere now. They rolled me back to my room and told me biopsies had been sent off to the lab, now we wait and see what nasty fungus or bacteria grows because three COVID-19 tests were all negative.
WEIRD…IT IS COVID
One of the first results to come back (you probably saw this coming): COVID-19. The pneumonia was COVID! Soon I was moved to an isolated part of the hospital and everyone who entered had to wear a spacesuit. The pulmonologist had been coming by on rounds, explaining everything they had learned. When COVID showed up, she went over two possible treatments, plasma or a fairly new therapy out of the UK: doses of a steroid called dexamethasone.
DEXAMETHASONE
We decided on the steroid and she started an IV drip right away, that evening, and the next morning I had my second drip. I began to rebound right away and was sent home by 11:00 AM, that’s how fast the steroid went to work.
As I write this, I’ve got five more days of the dexamethasone. Yesterday I got out in the sun for a bit, which was miraculous. I do feel like I’m kicking COVID and am trying not to rehash this perfect storm of starting a new MS drug combined with a lockdown, and instead be grateful and abidingly aware of how fragile this life is.
While I was in the hospital, my husband had the boys tested for both antibodies and COVID-19, and he got tested for COVID as well. Here are the whacky results: Dave is negative; Kyle has antibodies and is negative; Frank has antibodies but is positive! What?!
HOW DO YOU HAVE ANTIBODIES AND COVID?
When you test positive for COVID-19 in Colorado, someone from Tri-County Health gives you a call. I know a lot of folks are pissed off with Tri-Country Health for keeping us in lock-down (since you just read my story, I think you know how I’m reacting to people whining about precautions) but this agency is compiling a major data base on all cases, hoping to connect the dots.
One theory posited by the person I spoke with at Tri-County Health on why Frank has antibodies and is still coming up positive for COVID–with no active COVID symptoms–is that he is carrying around dead virus in his nose. Technically, you might want to hang out with Frank, if that’s the case: he’s a walking vaccine.
Speaking of vaccine, and this is totally anectodical, but I don’t see how they’re going to find one for COVID-19. I was deeply disappointed to hear that all funds were being shifted from searching for treatments to only developing a vaccine. I get it but, from where I sit in the over-stuffed chair, looking at my new nemesis, “The Bed,” I think we need to sober up, embrace facemask fashion and aggressive hand washing, and find therapies for a virus that may be part of our new normal.
THE INCURABLE OPTIMIST
On a final note: as scientists and medical professionals look for connections and try to fit the puzzle pieces together, I will add that I firmly believe my exercise regiment, dedication to meditation, and a healthy, nutrient-dense diet carried me through this.
And, perhaps attitude and a whole lot of good friends sending me healing thoughts. I often call myself an incurable optimist; that may have been my biggest weapon of all.
UPDATE: I wrote this post June 23 and have since recovered nicely. The toughest thing has been getting my strength back but I’m working on it. Dave and I are both sleeping soundly–especially after a visit to the chiropractor.
