It’s also a story about how the Centers for Disease Control (CDC) and the American healthcare system in general are not in a crisis to deal with non-cookie cutters, including immunocompromised people with health problems far more serious than my own. Following my allergic reaction, I submitted information and updates to the CDC’s V-Safe, a vaccine side-effect reporting app that says it is reaching some patients in need. I have also used the Vaccine Adverse Event Reporting System (VAERS) jointly operated by the CDC and the Food and Drug Administration, as well as the Pfizer portal. As a health journalist, I know the jargon, the phrases that are supposed to trigger a reaction. (Allergy! Anaphylaxis! Rapid pulse – even with yoga!) I was looking for specific instructions for mine Reaction. Should I have the second dose? Switch to another vaccine? But aside from routine “Submission Received” emails, neither I nor my GP have ever heard a beep from VAERS (which is spammed by Anti-Vax submissions), Pfizer, or V-safe.
Even after I finally had a safety plan – I would switch to the Johnson and Johnson admission and have it in close proximity to a hospital emergency room – the Washington D.C. health systems were building. and Maryland one barrier at a time. I’ve never managed to speak to, or even email, anyone at a nearby hospital with one exception – and in this case a “vaccine technician” who manned a phone line told me to take the picture her computer assigned me. (“Even if it kills me?” I asked a little melodramatically.) I never managed to get the shot in the ideal setting. The allergist who became my guardian angel for the vaccine devised a backup plan that kept me safe.
All of these doctor’s appointments have taught me that I am by no means the only non-traditional patient. Even within my own family – and in my core, extended, and blended families, everyone aged 12 and over is fully vaccinated – a person who had no problem with the vaccine itself was injected with a defective syringe. He too struggled to find answers as to whether a usable dose was getting into his arm, considering how much was dripping on his jeans.
A few weeks after my odyssey, I found out about a CDC advisory group that allowed doctors to seek advice on patients with unusual vaccination risks or problems. But none of my own doctors, a high-profile team affiliated with the hospitals of Georgetown, Johns Hopkins, and George Washington University, knew it existed. And I, with a great network in healthcare, only discovered it because one of my sons has a friend from his gap year whose father works in the group.
Around 3 p.m. I got my first Pfizer shot. on Thursday, March 25th, in a supermarket pharmacy in suburban Maryland not far from Washington, D.C. The vaccination center was neither well managed nor properly socially distanced: I can report it to the state supervisory authorities. When I told them, among other things, that I had to be watched for more than 15 minutes – among other things, I am allergic to bees and I had a terrifying side effect after a tetanus vaccination in Guatemala years ago – the pharmacy technician looked confused. “You can stay as long as you want, but you don’t have to.” They also did not give me any information about CDC’s V-Safe, which anyone given a coronavirus injection is encouraged to use so that the health authority can learn more about side effects and reactions.
Based on my own idiosyncratic allergy history, I decided to wait a full hour in the pharmacy. (Millions of people with insect or food allergies have safely taken the coronavirus shots – including my sister. Talk to your doctor if you have any concerns.)
The first symptom, severe headache, set in immediately before I even got back to my seat. This is a known side effect, although mine came on terribly quickly. But when I left the pharmacy I was fine. I went masked and outside to a meeting with a Politico colleague I hadn’t seen in a year and who lived a few blocks away. While driving, I felt numbness in my lips, and it spread symmetrically from the center. Then the tip of my tongue went numb. I felt a swelling in my mouth, but it was slight; I could breathe. This slow rise isn’t typical of an allergic reaction – but that’s exactly what happened the last time I was stung by a teeny baby bee hiding in a bushel of plums. That landed me in the emergency room.
Although I always wear an EpiPen, I am less careful about keeping my Benadryl supply away from the bee Season. Fortunately, I had a filthy dose buried deep in my pocket. I took it and taught my colleague Epipen 101 just in case. I sat there with the symptoms neither subsiding nor spreading. I asked my husband to fetch me; I would pick up my car on another day.
During an urgent telemedicine consultation, a nurse with experience in the emergency room explained to me which medication I would have to take in the next few hours. She considered sending me to the emergency room, but after pinching my open mouth from a distance and learning that I lived near a hospital, she thought I would be fine at home. But she advised frequent controls. We set an alarm clock every hour that wakes us up. It was a long and a little scary night.
She also told me to top up Benadryl before getting my second shot and try to get it in a medical setting, not a retail pharmacy. Good for me as I really didn’t want to go into anaphylactic shock around the frozen vegetables.
But I had doubts about taking another dose of Pfizer at all.
So did the next five doctors I consulted, plus two vaccine scientists I know from society, at the FDA and Cornell (the latter, a case study of why you should keep your friends away from summer camp). My initial reaction to Pfizer was bad, but not disastrous. But repeated exposure in as little as three weeks could be worse; Allergies and reactions can escalate. Would it kill me Very unlikely, according to the latest CDC data no one has had a fatal allergic reaction to the mRNA shots. Could it hurt as I still had some aftershocks from the first shot, including persistent numbness? Maybe, maybe not. It wasn’t a hypothesis anyone wanted to test.
It took several weeks and a series of appointments (including one with an allergist who gave me misinformation, including about preservatives in vaccines, and another with whoever became my guide) to develop a plan. We considered settling for a partial vaccination. A syringe would give me decent, if imperfect, protection – but it wouldn’t lessen my feeling of not only being emotionally trapped but being locked out of virtually any place that required full vaccination records. We talked about giving me my second dose of Pfizer in an emergency room – but the doctors still felt it was too risky if we could even arrange it. A science journalist friend found a medical journal article by doctors in New York state who were “microdosing” allergy sufferers – and giving Pfizer, but in five small injections. I contacted her but decided if I had to drive all the way to Rochester, NY to get an injection, that probably wasn’t the right choice for me. Especially when we need boosters, I should get off the Pfizer train.
My colleagues on the Politico health team searched the CDC website on my behalf and found that the agency suggested that people who had a problem with the mRNA vaccines, like Pfizer or Moderna, switch to the J&J vaccine after four weeks should, although there isn’t much data on this option. Finally I ended up there. But since my reaction was unusual and complex, every doctor I spoke to thought I should still get the J&J dose in the hospital or an adjoining doctor’s office, not in the inpatient but near the emergency room.
I’ve been trying to arrange that for weeks. Switching the recording in the middle of the stream, especially when there are restrictions on where you can get the dose, is immensely difficult – even if you know a million healthcare professionals. I’m usually pretty good at navigating our crazy healthcare system after years of treating it. This time around, in search of a J&J dose and a safe place to take it, I hit wall after wall.
Since J&J is easier to store than the other recordings, it is mainly used in community settings rather than hospitals. And at that point it was impossible to find out which hospitals had even limited supplies or how to get them. Additionally, most of my doctors are in DC, but since I live in nearby Maryland, it was illegal for me to get the injection in DC. But in Maryland Health systems wouldn’t even put me on a waiting list if I weren’t already their patient. Fortunately, two health systems – Georgetown / Medstar and Johns Hopkins – had hospitals on either side of the border, and I was cared for by their respective doctors. That freed me from suspense; I could be vaccinated as long as I stayed on my side of the state line. But further communication was impossible. I was able to click my way onto the waiting list, but couldn’t find out if a particular facility has J&J, let alone request it. My family doctor couldn’t either.
I never got to speak to Hopkins; I registered with Medstar and waited over a week for a telephone consultation. I was then told to take the exposure that was assigned to me. Even when I showed up in person to explain that I couldn’t take Pfizer, I was told I would be considered a no-show and struck off their vaccine list. Nor would MedStar call me or my doctor if and when a J&J shipment was received. (A spokeswoman said Medstar Health follows all CDC protocols but doesn’t know in advance what shots it will get from the local government on any given day, so I can’t pre-match a particular vaccine to a patient. Vaccines were in early April Still in short supply.) A member of the phone line at the Maryland mass vaccination center caught my dilemma immediately, but was unable to help.
Finally, my new allergist tracked down a single dose of J&J. Her DC office was a block from the emergency room of a major teaching hospital, but she couldn’t vaccinate a Marylander there. She had another office in suburban Maryland two miles from a community hospital. Same attitude, same doctor, same arm, longer drive from the hospital. I swallowed more Benadryl than I’m used to, and we had two EpiPens and prescription steroids on hand just in case. She kept me for three hours, watched me closely, and checked my vital signs every half hour. My blood pressure was low to begin with, and I felt weak and dizzy at times, having to hold on to the wall while walking – but that was probably double the dose of Benadryl, not the syringe. A peanut butter clif bar and a bag of almonds helped. And finally I was vaccinated.
When I heard about the CDC panel from my son, my doctors and I had been doing weeks of testing and research on the best way to be fully vaccinated. I emailed my son’s friend’s father – “Bethesda Mom with Pfizer Allergy, Kids are Gap Year Friends” – but he told me that the medical experts advise doctors, not patients directly. He has Please reassure me, one parent on the year abroad, that I’m in good hands with my new allergist, but maybe I just want to ask you about a blood test. She got it and ordered it before I got my J&J shot.
I never expected the CDC to drop everything in the middle of the pandemic and rush to my aid, and some of the vaccine reporting agencies are for research, not patients. But having multiple reporting systems and not reaching me or my doctors also doesn’t seem like a good plan. (I know someone who has been called after a less serious Moderna disaster than my own.) A simple answer like: “We have received your message and will be in touch as soon as we initiate the next phase of mass vaccination.” Or an automated response to me or my doctor referring them to the CDC counseling team – the one that found my child. These reporting systems should find a way to weed out cranks, post an FAQ, and focus on real doctors with real questions about the patients that aren’t cookies.
The CDC has not returned a request for comment. Pfizer says its security team is reviewing all adverse event forms submitted through its reporting system – with expedited review for those considered the most serious. His security team reacts to reports when it deems it necessary.
If it was so difficult for me, a seasoned health journalist who lives about halfway between the Department of Health and Human Services and Tony Fauci’s lab, with colleagues who can post details on the CDC website, to find a way forward I can’t imagine what most people do. Many are likely to simply skip the second shot – not the public health outcome we want as we try to vaccinate our country against the pandemic. Any unresolved problem left to smolder undermines a troubled public health system the moment we need to restore trust, not fear. We need information that is fast, accessible and responsive. That is the cornerstone of trust.
These mRNA vaccines – Pfizer, Moderna, and more in the pipeline – are miraculous breakthroughs that are likely to lead to new and better vaccines for a whole range of diseases, from flu to maybe, maybe, HIV / AIDS. I’m not sure if I can take mRNA vaccines in the future, but I’ll worry about that later. I’m currently vaccinated, and with so little known about mix-and-match vaccines, I’m looking for scientists who want to study the antibodies and T cells in my blood. The relief has not fully set in; these two months took their toll. But I feel lighter walking around the neighborhood and seeing gardens in bloom, unmasked children playing. And if my stress isn’t completely gone by next weekend, the Cub Scout Hug should take care of it.