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Long COVID life training on symptoms, treatment and improvement

I just relaxed and sat on the couch watching “Friends”, but I knew something was wrong. My heart rate was fast and abnormal. I started hissing and felt breathless.

I checked my oxygen and heart rate, and both were unusual – 90% and 150 beats per minute – so on what had been a normal Thursday night, October 28, 2020, I called my family. Then I called 911.

The ambulance technologist said, “Oh honey, you’re just having an anxiety attack.” I might have been anxious, but I knew there was something deeper going on.

And I had previously dealt with skepticism. A week earlier and five months before, the doctors had told me I was too emotional. I had overcome a case of COVID-1

9 in the spring and two doctors said I was by no means still experiencing symptoms of the disease.

Across my room at a Los Angeles hospital, patients were in ventilators. Tests showed that my heartbeat was actually irregular and my oxygen deficiency.

My coronavirus test came back negative. The doctor thought I might have problems with my heart and lungs. Or maybe there was another type of infection. I was released with some heart medication and was told to see a cardiologist.

The next few months went into 135 appointments. After seeing 32 doctors, undergoing 47 tests and apparently countless blood draws, I learned that there is an expression for me: I am a COVID-19 long-haul carrier, and experience has taught me a lot about myself, the medical system, the value of friends and family.

A patient in a hospital room

More than half a year would pass before Sandhya Kambhampati would get the care she needed.

(Sandhya Kambhampati)

My first symptoms appeared not long after the lockdowns imposed in March 2020. When I called my doctors, they advised me to quarantine and stay home unless my oxygen levels dropped below 88. My sister spent the night with me an oximeter, so I could monitor my oxygen and heart rate and my oxygen level dropped to 90 but not lower.

It has been 1 year, two months and 22 days since my coronavirus infection was confirmed. I first showed COVID-19 symptoms on April 2, 2020 and tested positive two weeks later when I had to drive myself to the South Bay Galleria to get a cotton swab. I struggled with 103 fevers for a month, lost my sense of taste and smell and endured severe body aches and wheezes.

I came back to work, almost in May, still tired and had a feeling that something was not quite right. I slept 10 to 12 hours a night, felt dizzy, had migraines that lasted for several days and could barely get up and down the stairs to pick up my mail.

I remember the day my taste came back because it was my dad’s 60th birthday, June 5th. I made lemonade with too much lemon and could taste the acidity I had been missing for two months. I was so happy that I cried.

During the summer of 2020, I did what I knew best as a journalist who specializes in collecting and evaluating data: taking notes and collecting statistics. Because many hospitals were flooded with COVID-19 patients, I was asked to wait, and maybe the “cold” would resolve itself. It never did.

(The only time I was grateful to have had this terrible disease came late that summer when my father had a heart attack in New Jersey. I was able to fly back east because I had already built up coronavirus antibodies, even though physical effects lingered.)

A total of 195 days passed after my COVID-19 diagnosis before I finally got the care I needed.

Being a COVID long haul has taught me to be more fearless, resilient, careful and curious than I ever was before.

Since March 2020, the Los Angeles Times has been tracking recoveries from COVID-19. I am one of those people marked on our side, but surviving and recovering is not the same thing. As people ditch their masks and return to normal activities, I can not help but think of the countless number of people who are like I was last summer and wondered why they are so tired all the time.

“That night, when I was told I was just anxious, there was not even a medical code … for people like me. My doctor wrote down: ‘Post COVID syndrome.’ “

Sandhya Kambhampati

I also can not help but think of those who feel uncomfortable speaking for themselves, especially in a health system that can be daunting to navigate. Keep an eye on the stereotype of the demanding journalist, but it came in handy when I confronted long COVID-19 – and doctors.

Knowing deep down that something was wrong with me, I pushed back. Just an example: After I insisted that a doctor refer me to a specialist, he finally referred me to my rheumatologist, an amazing doctor who follows the latest research in post-COVID patients.

Being a patient does not only mean having to speak for yourself, but educating yourself about doctors, exams, blood tests and the confusing system of co-pays / deductibles.

My family, filled with doctors of all specialties, has coached me from the sidelines on questions to be asked, but I always go back to the five Ws in journalism – who, what, when, where, why. By using another reporter when I am told something, I repeat it back to the doctor to make sure I understand.

I take a notebook for each visit to take notes. During the pandemic, I wrote everything down in my phone because it was easier to disinfect and then transferred the notes to my notebook at home.

If tests are ordered, I ask doctors to explain the test in clear words that I can understand why it is necessary and possible consequences of the procedure.

Counseling “Dr. Google ”may seem easy, but I do not recommend searching your symptoms on random sites. I only visit WebMD or sites maintained by the Mayo Clinic or the Centers for Disease Control and Prevention. Sometimes it can feel easy to Google your symptoms, but it’s better to just ask your doctor.

Two other useful habits I took up since my ordeal began: I always ask the direct line to the doctor so I do not get run over. And I arrive at appointments early, just in case they cancel and can push me in earlier.

Every time I check my oxygen or heart rate, I log my data into a spreadsheet. I come to my appointments with vivid details about symptoms and notes.

“Every time doctors found something, another test would show something new to examine. A doctor jokingly said that my symptoms were like dealing with ‘whack-a-mole’. ”

Sandhya Kambhampati

These habits would be useful for any long-term illness, but they have been particularly useful as science races to learn more about COVID-19 and its lingering effects.

When the ambulance drove me to the hospital last October, the night I was told I was just anxious, there was not even a medical code — a numerical shorthand indicating treatment or illness — for people like me. My doctor wrote: “Post COVID syndrome.”

The doctor said it would have been “nice to place you in a category” to track my progress, but the disease was still so new. Now there are codes for every type of damage COVID inflicts and they are used by every specialist I go to.

Because the symptoms are unusual, and no one really knows the full long-term effects of the disease, doctors do what they know: treat the symptoms, run tests, and rule out what they know it is not.

The disease takes many forms, and every hour, every day, scientists and doctors discover new things. Researchers find that not everyone has the same symptoms, making each patient a snowflake, unique and in an unknown area.

For me, what started with a heart monitor turned into a couple of lung function tests, CT scans and even an altitude test to make sure I could fly safely to a friend’s wedding this summer. Every time doctors found one thing, another test would show something new to examine. A doctor jokingly said that my symptoms were like dealing with “whack-a-mole”.

In the winter of December 23, 2020, I got a call from respiratory therapists starting a new program for COVID long haul. They started the program because the parents of one of the therapists had come down with COVID-19. His father survived, but his mother did not. He wanted a way to help others recover.

They told me I was going to be patient No. 5. I was stunned that so many months into the pandemic, I was only patient No. 5. How could that be? They told me they added patients based on the probability of survival.

I still feel like I hit the lottery with this program. I could not see a pulmonologist at that time because they were all needed in the ICUs. But my rheumatologist ordered a lung function test. The numbers showed that I needed stronger inhalers, a drug that I inhale due to lung damage.

They asked me to record my heart rate and oxygen and I already had spreadsheets full of data. After 12 weeks, I graduated from the program in April, and with new breathing techniques and exercises, I have made my lungs stronger and they heal every day.

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I am grateful that I have understandable editors, the financial means to afford treatments and to be able to take a Lift to my appointments when I was not allowed to drive because of the medication I was in, and the support of many doctors in my family who followed every test I got with a phone call. I am also grateful to my body for helping me fight through this and recover.

This pandemic has increased inequalities, especially among people of color and women like myself. It has been long and isolating and has made me see how fragile life can be. I do not take for granted the privilege of having the ability to call my parents, family or friends with a drop of hat thanks to FaceTime, WhatsApp and high speed internet. I believe being a trained patient is the key to getting the care you need.

I also know that as someone who speaks English, I am privileged. I have had to translate Spanish for a few people in waiting rooms as I saw them struggling to communicate with the nurses and staff.

I am very grateful that I am here today and some days I feel the guilt of the survivor. I am thinking of the thousands of individuals who do not have access to affordable health insurance and of those who did not survive. I also sympathize with those who have lost loved ones.

I have learned not to take no for an answer and to say no when I have to rest. One of my doctors joked, “You take more notes than any other patient I’ve had before.”

These days my oxygen is 96/97 most days and I am able to go up and down the stairs without getting wrapped up. I am still going for tests to resolve some of the symptoms. I can hold interviews and not lose my voice until late in the day. And I can write and share my story.

Share your story

As I recover, I will continue to report on the long-term effects of COVID-19. If you are also a long distance carrier, I would like to hear about your experience. If you want to share your story, send me an email at sandhya@latimes.com.

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