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Celia’s Story

Published 20.07.20

I had diarrhoea April 11-13th which resolved.

On the 14th I developed fever and shortness of breath.

I have had asthma, mostly well controlled by inhaled corticosteroid for all my adult life. I have a rescue inhaler on hand but have rarely used it in recent years. The breathing problems I had were not like asthma. There was no wheezing. I just couldn’t get a deep breath. My nasal passages and sinuses were horribly inflamed.

By Friday the 17th I was getting panicky because the breathing had become steadily worse. I phoned my doctor’s office, and was scheduled for a virtual visit On Monday. I was told that I could get tested at a local walk in clinic parking lot, so I did. On Monday, my doctor told me that I was “clinical for Covid-19.” She also told me that she could almost guarantee me that my test would come back negative, because the virus would have already moved from the nasal/pharyngeal area down into the lungs. The swab would not be able to detect active virus. She was right.

By April 29th, I was still struggling to breathe and kept my rescue inhaler clutched in my palm or at arm’s length when in bed. I found that sleeping on my back with my arms up over my head on the pillow helped open my airways. I was sent to a respiratory clinic for an eval. I had to climb a flight of stairs. I felt I had climbed Mt Everest.

May 8th I was still suffering with SOB and daily fever, and I spent 6 hours in the ER (A & E) in a room with the negative air pressure system getting the million dollar work up. Everything was normal except the EKG. It revealed I had septal infarct (prior heart attack, time undetermined). It could also be that the leads were improperly placed.

I am on day 100, in my 15th week. My breathing has gradually improved. I don’t feel like I have a tight corset around my torso any more, although I still can’t wear a bra or anything tight around my chest. Like so many other long haulers, I face daily crushing fatigue, daily fever, and can feel some foreign force pumping through my body. I had the skin rashes which have now cleared. In the past 4-5 days I have observed sinus tachycardia. This morning my resting pulse spiked from 64 to 157 as I slowly made my way from one room to the next. My cardiologist won’t see me with fever and a suspect diagnosis. Catch 22.

Other than the mild asthma I was in great health before April 11th. I have run and completed 20 full marathons. I flew jets for a living. I’m not a wimp. But now I feel like i couldn’t fight my way out of a wet paper bag. There seems to be broad consensus among those of us with the long form of the virus that trying to lead the recovery by pushing ourselves to do a little more results in a crash. I have found that I can walk the beach for 2.7 miles (4.35k) on the hard sand. My knees are wobbly and my quads feel like jello. I am content that I can cover that distance even if it is at a 26 minute mile (16.2min/k). I struggle up the incline above the high water mark in the soft sand to get back on hard land. Some days my fever is higher, and I have to pass on the walk, but that is okay. There’s always tomorrow. I am fortunate that my healthcare team is supportive and caring, even though they can offer no therapeutics.

I ache for those who are encountering doubt, disbelief, gaslighting. I find that to be unconscionable and highly unprofessional behaviour, and I urge you to shop around. To everyone suffering out there, you are not alone. Your symptoms and suffering are painfully real. We will triumph over this virus. It just takes a tincture of time.

Update 23.08.20

My journey with suspected Covid-19 (my test was negative) continues into the 5th month.

The daily fevers finally subsided as of last week. The tightness around the chest is all but gone. I am able to breathe deeply again.

However, I spent the better part of the day today in the ER (A & E). My physician was concerned about my low oxygen saturation coupled with a high resting pulse rate. This can point to PE (pulmonary embolism) blood clots. My labs revealed an elevated D-Dimer level, so a CT scan with contrast dye was ordered. No blood clots were observed in my lungs…very thankful, as many Covid patients are being stricken with blood clots.

Because I am so winded with walking (I still cannot walk and talk at the same time, and I cannot manage an incline without extreme difficulty), I was prescribed Medrol to reduce inflammation in my airways. I still have orthostatic intolerance (standing up following bending from the waist makes me almost pass out.) I have learned to pick up certain things with my toes. I don’t use my kitchen base cabinets.

I am seeing the light at the end of the tunnel though and feel I have turned the corner. I fervently hope that sharing my experiences can offer some encouragement to those who are still suffering silently and looking for some small glimmer of hope.