I wasn't feeling well. I had let myself get run down -- putting off getting a tune-up. I had a dry cough that was painful, and I was clearing solid, large translucent things like I'd never seen before. This went on for three days. I thought it was normal cystic fibrosis stuff. My CF doctor, Richard Belkin, MD, medical director of the Santa Barbara Cottage Hospital CF center, also saw this as a CF exacerbation and decided to admit me after seeing some gnarly photos of what I coughed up.
I did not have a fever when I left home, but by the time I had driven to the hospital two hours later, I had a fever of 102. At that point, my doctor recommended I be tested for COVID-19 and -- after four days -- the results came back positive. This is when the story of wonderful humans began.
It's hard to put into words the wonderful, loving care I received while I was inpatient at Cottage Hospital in Santa Barbara from March to April. At first I was being treated with intravenous antibiotics for a CF exacerbation but the concern about COVID-19 was there. My doctor told my daughter in Colorado that she should come. We could see each other only through a window and talk to each other on the phone. She was able to say, “I love you,” and that, alone, was worth her travels.
When my COVID-19 test came back positive, I was transferred to the COVID-19 unit. Things were mild at first, but then my condition took me from being a healthy-ish CFer to one who could not get out of bed or eat. There were abnormal results from blood tests. I then needed oxygen, and was transferred to the intensive care unit (ICU). I spent five rough days there.
I remained in inpatient care longer than some because I live alone. Before I could be discharged, I needed to show that I was well enough to cook, do dishes, and walk around my tiny apartment. I had concerns.
What if I got worse? How would I get back home if I could not drive myself? Because I had COVID-19, I could not -- in good conscience -- ask family or friends to help. My doctor understood this.
I stared to get more concerned when -- in the COVID-19 ICU -- my nurse described my lung sounds as “quite poor.” When I asked what that meant she said, “You know that sound Velcro makes when you pull it apart? That's what your lungs sound like.”
The care I received went above and beyond -- in my opinion. Nurses put icepacks in my armpits and around my neck when my fevers reached 104 degrees. My lab results were worsening. In particular, my levels of c-reactive protein (a measure of inflammation), was more than 300 (normal is less than 10).
Then, before a ventilator was needed, I turned the corner. Was it a controversial dual-med therapy my doctor prescribed, the loving care, or the prayers? Gratitude overwhelmed me. Nobody, including me, expected me to survive this.
I returned to the COVID-19 unit. My fevers were lower, although I still needed oxygen, but not a lot, and eating did not appeal. The full health care team helped me through these times and others - the nightmares, the panicked moments of coughing, and through the inability to make it to the bathroom. Humor also played a role as -- day-by-day -- I would identify with such characters like Eeyore, Piglet, and Dory the bluefish all while experiencing short-term memory loss. My nurses and I laughed a lot as my walks around the unit turned into a dance party with an oxygen tank and monitor in tow. Light moments…amid the heaviness.
My physician, the nurses, the care techs, and the respiratory therapist were heroes. More than that, they all helped me to feel human, valued, and hopeful. They provided comfort in times when I could not comfort myself.
And, they did their jobs flawlessly amid all the new rules on virus control. Of course, I was not their only patient, yet they navigated through it all with masks, gowns, gloves, and face shields without complaint. I went home after 22 days of being an inpatient at the most wonderful hospital one could imagine. Central Coast Home Health provided wonderful home nursing care and physical therapy window appointments. My local fire department did daily check-in calls with the RUOK program and delivered prescriptions and groceries.
I am still recovering more than eight weeks later, yet in milder ways. I randomly had fevers reappear for two evenings, although they weren't as high as when I was hospitalized. Before COVID-19, I was as active as my lungs would allow…a healthy sick. Now, I need oxygen to sleep and for any exertion, which was not the case prior to COVID-19 -- like the 5 minutes of dancing I do for my cardio -- so fun! I even need oxygen to walk on flat land at sea level. Before COVID-19, I only had to use a mini-oxygen concentrator for hiking up hills and for air travel.
My biggest issues have been with hemoptysis which seems to be remedied by Trikafta™. And, I am relatively old for someone with CF who has all their original parts. I am in currently in the evaluation process for a double lung transplant.
The wonderful humans who cared for me during my COVID-19 journey -- and continue to care for those who are sick and alone -- are extraordinary.
They protect themselves -- yet are exposed daily to this hyper-contagious virus. And, in spite of the enormity of this, their loving care perseveres. While it is true what they say, that those who die of COVID-19 die alone -- without their families and loved ones near. Yet, from the inside, I can attest that they do not die alone. The hospital staff are giving bedside love and care, freely. Watching my healthcare team's devotion to their vocation of caring is all so overwhelming to try at all to put it into words.
Interested in sharing your story? The CF Community Blog wants to hear from you.