My Labyrinthine Journey with a Covid Coda

Basic Stuff

• Name: Rondo
• Country: United States
• State: California
• City: Soledad
• Gender: Female
• Age: 66
• Education: Ph.D Degree
• Primary Illness: ME/CFS
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Neurally mediated hypotension
  • Mast Cell Activation Syndrome (MCAS)
  • Long COVID
  • Pure Autonomic Failure, Calcium Pyrophosphate Deposition Disease
• Year Illness Began: 2020

Functioning Interrupted

Most Impactful Loss

I lost my career in veterinary medicine, which I loved. I had to stop working several years before I had intended. As a result, my animal hospital, which represented my life’s work, closed down and left my community without a veterinarian. I feel tremendous guilt for this.

My Story

From childhood I had always wanted to be a country veterinarian. I graduated from veterinary school in 1985 and went right to work. Veterinary medicine is physically, intellectually and emotionally taxing, but I loved my job and never wanted to do anything else, despite all the stress involved.
By 2008, I was living my dream: running my busy mixed animal hospital treating pets, horses and other livestock in a small town in central coast California. I had started there in 1990 and eventually purchased the business. I felt loved and appreciated by the community for the services I provided and became close to my clients over the years. When not working, I helped my husband at home on our small ranch with our own animals, and enjoyed training and competing on my own horses in ranch horse contests and ranch rodeos.
A routine mammogram changed all that and I was suddenly a member of a new group: the world of oncology.
I continued to work full time during 18 months of cancer treatments that included multiple surgeries, months of chemotherapy, 7 weeks of daily radiation treatments and a year of immunotherapy infusions. Because I had been generally healthy, I tolerated the treatments well but never felt that I had regained my full capacity. In retrospect, I now realize that what my oncologist and I both believed at the time to be an adverse drug interaction was actually my first ME/CFS crash. I know this now because I have had several relapses in subsequent years and each time I recovered, but lost a bit more of my characteristic stamina.
In 2012, I became dizzy, developed impaired balance and vision problems. It took 5 months and 5 separate providers before I found someone who could help me. My diagnosis was “central and peripheral vestibular hypo function”. I now realize that it’s a symptom, not a diagnosis, but 6 months of vestibular rehab therapy led to substantial improvement.
In 2015, I had a hysterectomy; I stopped breathing and my blood pressure plunged alarmingly in the recovery room (MCAS, anyone?) After that I developed what I now understand is PEM; I would get through an event or stressful situation at work, only to be on the couch during all my days off. I felt so terrible intermittently that I was convinced that I had Addisons Disease. The endocrinologist thought so, too until the tests came back normal. He completely lost interest and gave me this advice: read the book “Eat, Pray, Love “ and get counseling!
My business partner decided she wanted to retire in 2016. I didn’t feel able to buy her out and run the animal hospital on my own, so we looked for a buyer. By 2019, we were still looking.It seems that young vets do not want to own veterinary hospitals any more,particularly in rural communities,but there are corporations that buy the business and employ the former owners to work in them. We just couldn’t find a private buyer. That year we finally found a corporation that would buy my partner’s half, which was not easy because corporations don’t like rural practices either. Then Covid hit, which scared them off. We stayed open, worked our asses off, and stayed afloat.
All of us got Covid very early in the Pandemic. At the time we weren’t sure it was Covid, because there weren’t any tests available, and it wasn’t nearly as bad as the news reports had led us to think it would be. It definitely was different from anything I had had before and I remember relapsing fevers, headaches and a cough that seemed to last forever. Of course I worked right through it because after all, it was just a virus.
Soon after, I started having some health problems but I never made a connection until later. If I stood up for too long I would get woozy, have chest pains, my heart would pound, and I felt an overwhelming urge to sit down, which helped, so I was still able to work. The local cardiologist did some tests that showed I was having a slightly irregular heartbeat (PVCs). He said it wasn’t serious and wouldn’t cause the symptoms I was describing, which he attributed to anxiety. I insisted that something WAS wrong and eventually,imaging found a congenital heart defect (myocardial bridge) that can sometimes start causing problems in middle aged and older people. I saw a specialist at Stanford, who attributed my symptoms to the heart defect, which could readily be cured by open heart surgery.
Meanwhile, the corporate buyer came back and bought out my partner’s half of the business in 2021. I couldn’t afford (and didn’t want) to retire, so I stayed. I didn’t want to blow the deal for my partner so I kept my mouth shut about the heart defect, because I knew I’d be 100% after the surgery, and the whole thing depended on my being able to run the hospital for a few more years. I’m not a corporate type, and all the changes they made were pretty stressful, but I figured I could manage for a time.
I had the surgery in the fall of 2021 and recovered well, but I didn’t feel any better. In fact, I got progressively worse, although I continued to work full time.
In January 2022 we all got Covid again. That’s when I realized the mysterious unique virus I’d had before had definitely been Covid. (and yes, I was vaxxed in early 2021) After the second infection, I developed mild brain fog, which I was loathe to admit, since I was Clinical Director and all. It became impossible for me to stand up long enough to do more than minor surgeries. I sat on the floor a lot when seeing patients in the exam room. I stopped doing ranch calls for large animals because it became too strenuous for me to remain on my feet too long and you can’t sit down while you are working on a horse or a cow.
By this time Long Covid had hit the medical literature, and I began to suspect that’s what was going on with me. I don’t think any of my doctors had read those papers. When I asked them about it, they looked at me like I had a hole in my head.
Stanford doctors decided the irregular heartbeat could be causing a problem. I went back in August 2022 and had a PVC ablation. The procedure was more difficult than anticipated, lasted 8 hours, and led to a minor stroke. I took a month off work. When I went back to, I struggled in the role I had performed routinely for 37 years. I couldn’t keep up with all the mandatory after hours corporate meetings, and I couldn’t do enough surgery to meet the revenue goals placed by the company. They had changed my job description while I was out to require standing continually all day, which they knew was forbidden by my doctors. I was obliged to sell my shares to the corporation and was terminated from my own practice after 32 years there. My last work day was November 1, 2022.
Clients and staff were told that I had suddenly decided to retire. My blessed associate vet stayed on and kept the hospital running. (They were supposed to hire another vet to help him, but never did. Eventually he couldn’t take it anymore and resigned. The company closed the hospital, leaving the town without a vet.)
Imaging after my stroke had discovered yet another rare vascular anomaly (aberrant right subclavian artery). I was certain that if I had THAT fixed, I would be fine and able to go back to work so that I would not let my clients down and eventually afford to retire.
I had another major surgery (subclavian to carotid transposition with branched aortic stent graft) at Stanford in December 2022. The surgery was a technical success and I healed well, but you guessed it: I felt worse not better. I became profoundly fatigued. The orthostatic intolerance became even more problematic. The vestibular symptoms, which had been minimal for many years came back with a vengeance. I developed new onset visual disturbances, severe headaches, light sensitivity, muscle and joint pain, labile blood pressure, and all sorts of other mysterious symptoms.
I kept doggedly:) pursuing answers with cardiology, neurology, endocrinology, rheumatology. I had more tests and was found to have Pure Autonomic Failure. This is a rare disorder in which Lewy Bodies damage the peripheral autonomic nerves, including those in the heart, but it does not involve the brain. It can cause orthostatic intolerance due to blood pressure changes, but it’s generally a mild condition which doesn’t explain the extent of my symptoms. I kept pestering my doctors until my interventional cardiologist sort of threw up her hands and referred me to the Stanford Long Covid Clinic, which involved waiting nearly 2 years for the initial appointment.
Finally in October 2024, I was given an official diagnosis of Long Covid. By that time I also met criteria for moderate ME/CFS, SEID, CFID and MCAS.
At long last, the Six Blind Men had seen the entire Elephant!
It was a relief to finally understand what was going on. Most important was the validation from the provider, who saw my situation as typical rather than a drama anomaly. The first question they asked me at the initial visit was whether I needed to lie down (I did).
As there is no approved treatment, it’s more trial and error with meds for symptom relief plus Pacing, which when I happen to be feeling well means I have to stop and rest even when I don’t want to or think I need to.
Physical, cognitive, and emotional activity all wipe me out equally, and it’s hard to judge how much is too much. If I overdo it, I will be on the couch for the next few days.
Its taking forever, but I am finally seeing progress and starting to feel better.