Corona, Contagion, Confusion

Corona, Contagion, Confusion
My husband Joel, age seventy-six, has tested positive for the virus–the new big C.
Joel developed a low-grade fever on March 1. We were in San Francisco, visiting our ten-month-old grandson and his parents. They’d all had bad colds, and our grandson was still coughing and producing large amounts of sticky nasal stuff, so I wasn’t surprised when Joel got sick. (I figured that I eventually would, too.)
We went to a local urgent-care clinic. A competent physician assistant examined Joel, then assured us that he didn’t have the coronavirus: His vital signs were all good, and except for a 100.5° fever, he had no symptoms.

We flew home to New York City on March 2. That was two and a half weeks ago, and Joel has been in bed ever since.
For the first week, his main symptoms were a low-grade fever and fatigue, with no cough or respiratory distress. At that point, he started to feel short of breath and developed a dry, intermittent cough (which he generally gets every winter).
He grew more and more anxious, and by Wednesday, March 11, we knew that we needed to get him to an ER. We chose one where we’d previously had a good experience.

I called the ER to alert them that we were coming and was told that I had to call the State coronavirus hotline first, to get a referral.

Okay, I thought, no problem. I called the number and told our story to the woman who answered.

When I asked for an ER referral, she said, “We’re not medical professionals, and we can’t make referrals.”

Wow.

I didn’t bother to ask what they actually do do; at this point, Joel and I were feeling really worried, and I just wanted to get going.

I called the hospital ER and described my hotline transaction.

“If everyone at the Health Department and the hospitals were on the same page, I think it would help to stem the fear and frustration that we’re all feeling,” I told the ER responder, trying to convey our urgent need for help while also trying not to sound like I was blaming him for what had happened. My overriding goal was to get Joel into the ER.

“That’s the protocol that we’ve been told to follow,” the man responded quietly. He asked Joel’s name and age, then said, “Bring him in.”

After checking Joel for flu and giving him a chest X-ray, the ER caregivers agreed to send a swab to the Department of Health for testing. They told us it could take forty-eight hours to get the results, and that someone from the Department would call to deliver them.

We heard nothing on Thursday or Friday, although we contacted our doctor and the ER to inquire.

That Friday, March 13, we had a video chat with one of our doctor’s colleagues. He asked Joel to remove his shirt. After watching Joel’s chest for several minutes, he reassured us that, even if Joel was feeling short of breath, his breathing was not very labored–so although he’s exhausted, he’s not in imminent danger.

Finally, late in the morning on Saturday, March 14, three days after his test, Joel again called the ER.

“Oh yes, your results came in early today,” came the answer. “And you’re positive.”

I can’t help wondering when they were going to call us. And where was the Department of Health? Wouldn’t they want to know our contacts, the flight we’d taken home, and so on?

So far, no one there has reached out to us.

For the past ten days, I’ve had cold symptoms, with no fever, fatigue or cough. I have, however, been Joel’s unmasked, ungloved caregiver, although we do use different bedrooms and bathrooms. I wash my hands so often, I’m not sure that I have many skin layers left.

I can’t help but assume that I have the virus; it defies logic that I would have escaped it. A test would confirm it, but because I don’t have a fever or a cough, and test kits are still in short supply, I don’t qualify for testing.
I’m seventy-four years old.
Now Joel and I are watching and waiting, hoping that his symptoms will gradually improve–it’s slow going–and that I will be one of the fortunate people whose symptoms don’t escalate.
I have no complaint about the San Francisco physician assistant; I’m sure she was following the guidelines in force at the time of our March 1 visit. Indeed, she was the very kind of practitioner we would all want–caring, respectful and a good listener.
During our first few days at home, feeling confident that Joel had caught something–but not the virus–from our grandson, I’d attended exercise and art classes, shopped and so on. As soon as we learned that Joel had contracted COVID-19, I alerted everyone with whom I’d had any contact.
Now they’re all watching and waiting, too.
It’s clear that our country’s system of healthcare screening and delivery is broken. We and our fellow Americans are getting to know this personally–and, for some of us, at a terrible cost.
In this most uncertain time, the only thing I know for sure is that the national leaders who have downplayed or dismissed the threat of this pandemic have squandered the chance for a prompt, proactive response–and their delay will cost many people their lives. Politicizing this potential apocalypse is not only inappropriate; it also increases the risk that the virus will spread further and cause more deaths.
I wish that, like doctors, our national leaders had to take an oath to do no harm.
Joel and I will get through this. We’re lucky: We have a wonderful network of friends and some great doctors, including a very capable ER doctor who told us how to see if Joel was in respiratory distress (our worst fear) by checking whether his lips or nailbeds looked blue, and recommended we get a small device called a pulse oximeter to monitor Joel’s pulse and oxygen levels. Another blessing is that our son-in-law in San Francisco has tested negative for the virus.
And now, while we all are all watching and waiting, Joel and I hope that you and your loved ones stay healthy. For our part, we’ll be hibernating for the foreseeable future.
About the author:
Barbara Packer is former chief operating officer of the Arnold P. Gold Foundation, where she engaged daily with amazing, compassionate health professionals for thirteen years before retiring in 2015. Prior to her time there, she wrote professional healthcare materials for physicians and patients. “I subscribe to and support Pulse, where I can continue to take part in the ‘conversation’ that feeds my head, heart and soul.”
Update: “For the past two days, Joel has felt a bit better. After not eating much for more than a week, he’s now taking in small meals. His fever is gone, and though still tired, he’s no longer totally exhausted. I still have a sore throat, but no cough or fever to speak of. We believe that I have a very mild case of COVID-19. And it appears that even Joel’s more severe case is on the wane, thanks to time, lots of fluids, sleep–and luck.”

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Comments

35 thoughts on “Corona, Contagion, Confusion”

  1. Paula Mahon MD

    Very scary. I wish Sec of Health and Human Services could read this. My overriding thought is “there but for the grace of God go I” both for the provider who so easily dismissed the symptoms and for you who wonders if you will be so ill next.

  2. How brave to go public and tell your story! We all are still baffled by this mysterious disease-from contagion, to early symptoms, to the challenges of getting an accurate diagnosis, to care, and to recovery. Thank you, Barbara and Joel, for shedding light on this frightening and ubiquitous disease. Knowledge is power.
    May all beings be safe…may all beings be healthy.

  3. Barbara,
    Please know we are thinking about you down in Virginia. We will all be needing the humanism you worked so hard to teach us at the Gold Foundation as we engage this threat.
    All the very best,
    Jeff Donowitz

    1. Dearest Jeff,
      I have thought about you and how you have followed in your mom’s so competent and compassionate footsteps.
      Joel is well on the recovery slope and hopes to participate in research on immunity, and, perhaps provide it to others.
      Warmest regards,
      Barbara

  4. Warren Holleman

    Thank you for sharing your story. In a very personal way, you help me understand the reality of this pandemic and how it exposes the limitations of our health care system and our national leadership which failed to prepare.

  5. Arlene Bessenoff

    We wish Joel a speedy recovery. Please know that we will keep both of you in our thoughts. Thank you for sharing your story here and with the Rivercross community.
    Arlene & Steve Bessenoff
    Rivercross

  6. Christina Zamfi...

    Thank you, Barbara for posting this.
    I am now in San Francisco, in a Airbnb – separated from my sons and granddaughter, to make sure we don’t exchange the viruses. No fun, meeting classes, seminars, etc online.
    I am glad you and Joel are better, although you still have a sore throat, but hopefully it will subside shortly.
    We’ll do exercise together again soon! Be well and stay well, both of you!
    Christina

  7. Thank you Barbara for sharing, that is very kind of you both. We wish Joel a speedy recovery, and you as well. If you need anything please let us know. Happy to lend a hand. Vanessa, Felix and the fam

  8. Dave Miller – right down below you on 12th Flr. Quite a story, Barbara. Thanks for sharing. The seeming randomness of the severest (and sometimes fatal) cases is truly mysterious. The fact that you were exposed to this over so long a period, and have had an even milder case than Joel, is heartening but also mysterious. Everyone, including myself, who has had a cold or mild flu in the past 10 weeks is wondering whether they had some mild form of this. I wish you and Joel my best.

  9. barbara, joel, thanks your detailed, useful and encouraging story. joel, you will remember teaching in zhejiang, province, china just before SARS struck. this year the province had one of highest numbers covid-19 infections. as of yesterday one death. draconian regulations enforced one day before lunar new year. families checked every day. only one family member permitted to food shop every 3 days. most workers have returned to work. best of luck. bill r

  10. Get better soon and hope to see you at the swimming pool and sauna. Anything I can do please do not hesitate to call. Bob

  11. Dear Barbara and Joel,
    It is so generous and caring of you to share your story. I’ll keep you in my thoughts and hope you will add me to the list of neighbors upon whom you can call for anything you may need.

  12. Hi Barbara, I am glad to hear Joel is on his way to recovery and that based on the obvious, you are monitoring the possibility that you may have been exposed to the same virus. Please keep us informed of Joel’s health as he continues to improve and let us know the outcome of any of your tests. Thank you for sharing your story with us. I have been advocating for what you have done here, telling your story with details, who, what, where, when. In addition to the medicine and science needed to end this virulent disease, this is the kind of information that will help us end the further spread of this deadly disease. Love to you and Joel.

  13. What a well written nightmare with a good ending…Grateful the baby did not get sick and that your husband has recovered. i pray a lot of lessons are learned from this… the fact that no one called to follow up on your contacts is amother indication that our system is dysfunctional and overloaded. we are at the tip of a huge iceberg…. prayers that the friends you came in contact with do not catch the virus.

  14. Carolyn McNally

    Thank you, Barbara, for this fact filled yet compassionate description of our health care system. Blessings to you and Kies for a fast recovery!

  15. Judy hirschmann

    BarbAra, thank you for writing about your experience. I haven’t heard much about what it is like to have the virus. So glad Joel is doing better. Stay well and love to Joel.

    1. Barbara Packer

      Judy,
      Thanks for your comment. It’s a slow slog but we live day-to-day like the rest of the world. Perhaps that is the lesson to savor.
      Best, Barbara

  16. Elizabeth Barclay

    Thank you for sharing your story. I feel like it has become so easy to become back seat drivers here. Our President stopped travel into our country from China early on. Our anger should be directed towards the Chinese government and their coverup

  17. Thank you for sharing. Your story again illustrates how difficult it is to get even seen, much less tested. Incredible that someone didn’t call back right away and no-one has asked about your contacts.. no, we can’t count on Trump to guide us through this. Our only hope is help initiated at the state level, if there. I’m so glad your husband is better and hope you have progress upward, too.

  18. Josie Rodriguez

    Wow this is unbelievable. I am so sorry this happened to you. And I wish you both well. I do fault our Federal government for all the double speak we are hearing. This type of thing should not happen. Dr. Fauci for President! Sorry if I offend anyone but we are not only dealing with this virus but incompetence from our president and cowardice from his team. That is what scares me too. get well and God bless.

  19. Ronna Edelstein

    I send my prayers for the good health of you and your husband—and all those people with whom you inadvertently interacted. I also pray for stronger federal leadership to guide us safely through this pandemic. May we all be well—and resume our normal lives sooner than later.

  20. President Trump said he had not heard of people like you or Joel who wanted a Coronavirus test because of severe symptoms but had a difficult time getting one. So everything is fine. He also said he inherited a very bad system from the previous administration but he fixed it. So, nothing to worry about. But, seriously, good luck and stay healthy.

  21. Judith Kunisch

    Thank you for taking the time to write this informative (and frightening) story of both your husband’s and your covid-19 experience. I am hopeful you will both fully recover.
    As we have learned since you wrote your story, local San Francisco leadership has enacted a 21 day shelter-in-place policy. And today NY, CT and NJ governors assumed responsibility for their states and the people who live there. One of the major learnings from the 1918 Spanish flu was the absolute need for strong local leadership. Waiting for national direction is wishful thinking and when our governors and mayors, in partnership with state and local healthcare leadership, respond with clear and definitive policies and actions, we are safer. Let’s reach out and offer our expertise and support right in our own cities, towns and states.

  22. Arthur L. Solomon

    You have written such a poignant clear picture of what many of us will soon face. Stalling and red tape are not a solution to anything. Bravo to your husband for not panicking but hanging in there with your loving care. Bravo to you as well. No bravos to an administration that treats science as “you can take it or leave it”.

  23. Thanks for this portrait of infection. It illustrates so many problematic loopholes. What about all the people not as confident with the system as you, who might have given up after the first referral glitch? We can be sure that there are numerous such situations and many such “carriers.” And a question: can someone get re-infected? Good luck to you and Joel.

  24. Paul Rousseau, MD

    I’m so happy you and your husband are recuperating, and that your family in San Francisco is faring well so far. But you are right, the health care system is broken, and our current White House administration has certainly contributed to the worsening of the pandemic–I’m not being political, just stating the facts. And Diane, I hope Paul is recovering from whatever it was he had.

    Paul

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