I had the Johnson & Johnson/Janssen Covid vaccine, and this is my diary
Full disclosure: I am not a medical expert. I’m not an anti-vaxxer. I do, however, have a some complex medical diagnoses, strong reactions to medications, and a profound need for information to make the best informed decision.
This is an honest write-up of my experience with the Janssen (Johnson & Johnson) Covid vaccine and my motivations for receiving it. It’s not representative of other people’s experiences. When I was researching to make my choice, I turned up official leaflets and quantitative summaries of the — admittedly — limited medical trials but not enough personal narrative. I’ve often gathered more helpful and practical information from informal support groups or people with a similar diagnosis or treatment than from pharmacists, doctors, clinical trial reports, or government-endorsed spokespersons.
The patient’s story matters. We know our bodies and need to be the experts. So, here goes my vaccine diary:
My vaccination experience on April 7:
Superbly painful. I’m not sure if that is due to pharmacist technique or the actual vaccine, but I’ve never had a more painful vaccine in my life (and I’ve had many). I feel deep pain at injection site that bores into the muscle and shooting nerve pain toward my thumb as well as my jaw.
Waiting period after vaccine (30 minutes in my case):
Intense arm pain, so much I wish for an ice pack. Slight dizziness. Overall bearable.
5 hours after vaccine:
Chills begin — hard and fast. Within a few minutes, I’m on our heated carpet rug, shivering.
Night/Hours 7–12:
Chills ongoing and extreme. Mild headache. Extremely cold nose. Super, super thirsty. It’s the middle of the night, and I can’t sleep due to the shakes.
Hour 12 — not sure how many, maybe hours, maybe a couple days, I’m so beside myself:
Low-grade fever : 99 -100F. Extreme weakness (I crawl on all fours to the bathroom and can not walk or climb stairs). Mildly swollen lymph nodes in armpit and breast of the vaccine side. Headache increases — I swear, my eye balls are trying to drill their way out of my skull. Total loss of appetite with rolling nausea. Off-the-charts body aches affect my entire spine, radiating into neck, shoulders, ribs, hips. I spend most of this time in fetal position begging for someone to put me out of my misery. Ongoing pronounced thirst. Subconscious realization: If this is what the vaccine feels like, I don’t want to know what the actual virus would do to my body.
Hour -? What’s an hour? What’s a day? Is this my life now? Am I alive? — argggghhhhh
More concerning, unexpected symptoms mount: tinnitus, comes and goes. Absolute fatigue. I keep falling asleep mid-sentence and mid-thought. Dizziness. Burning sensation in both my ovaries (something I’ve never experienced before). High resting heart rate (140 bpm+) and irregular heart rate and pulse. This is when I start really becoming concerned that my body can’t handle this, but I’m too exhausted to even wonder what I should do about it.
? hours — 72+ hours (? the clock is almost in focus again but I can’t remember the day):
Fever breaks. Able to try rice crackers. Heart rate has slowed. Tinnitus, headache, nausea still come and go. Most annoying symptom: unpredictable vertigo. I crash into walls a couple times. Fall off the toilet once. Fatigue waxes and wanes and sometimes puts me flat on my back. Radiating sciatica pain and deep pain near my hip flexors/ovaries.
Days 4–7:
When I’m feeling half conscious again, I submit a write-up to the US government’s vaccine adverse reporting event system at https://vaers.hhs.gov/reportevent.html I gotta do my part, right?! Then I sleep some more.
Ongoing night sweats (unusual in their frequency and timing). Lingering headache and light sensitivity. Eczema and nasal allergies are flaring. I mix up words sometimes, to the delight of my children.
My energy starts returning slowly during those days, but remaining side effects seem erratic. Tinnitus and dizziness still come and go. My pants flap at the waist: I’ve lost 5 pounds by doing nothing other than shivering and hoping this is all a bad dream.
Today is day 8:
I’m up and about and surmise: In my case, the vaccine seems to aggravate conditions I’m already dealing with, like migraines and other neurological symptoms, autoimmune and allergic conditions, cardiac challenges. My Johnson & Johnson example seems to mimic what I’ve heard anecdotally from people who’ve had the Pfizer or Moderna vaccine: women of childbearing age experience more intense side effects than men or postmenopausal women.
A few additional considerations:
Why Johnson & Johnson?
My cardiologist expressed slight concern about me receiving the Pfizer or Moderna vaccines due to my history of anaphylactic reaction to some substances. Typically, this reaction would be counteracted with epinephrine injection, which I cannot have anymore due to a dangerous heart arrhythmia. After contemplating vaccine options, I concluded that the Janssen might be my best bet. Plus, my medical PTSD and I had to cope emotionally with only one vaccine instead of two. I’m also perimenopausal with some pronounced hormonal and bleeding issues, and scheduling a second dose would have been somewhat complicated.
Why get vaccinated at all?
I didn’t want to get the shot. I really didn’t. I don’t like medications with an unproven track record, and my family’s experience with new pharmaceutical products is harrowing. Our daughter’s autoimmune disease reared its head a few weeks after her first HPV vaccine. After months on a new blood thinner, my husband developed side effects that were nowhere in the medication instructions and denied by hematologists but confirmed when we spoke with other patients with similar experiences. I have always overreacted to medications, in ways that often made the treatment worse than the problem that it was trying to cure.
This virus, however, is a different beast altogether, largely because human behavior plays such a vital role in its distribution and rapid mutation. Our family, our kids included, is considered high risk for Covid. We’ve been isolated as much as possible during the last 12 months, but there are times when we have to come into close contact with people, and then we’re at the mercy of them making the right choices to protect us. The new spikes in transmission show that as much as we love others, we can’t trust our community members all that much.
Why else?
I love my fellow people. I believe in protecting and caring for everyone, regardless of age, ability, health status. I really do. Even if our family had low Covid risk, I would not condone frolicking in restaurants or at large sports events right now. I’ve seen, amongst friends who are medical providers and friends who aren’t, what this virus can do. It’s real. It’s serious. And we’ve missed the boat on containing it by adjusting our behavior thoroughly, like populations of Vietnam and New Zealand did. More importantly, while the virus knocked humanity on its butt in 2020, its mutations, which are now actively circulating in my community, may knock us into the last century.
Doubts before my vaccine?
Serious ones. I’m concerned the vaccine won’t protect us as well against the new mutations. I know of several people who are considered breakthrough cases in my little circle alone. But: this virus is smart, and it thrives on us being stupid. It’s taking advantage of the fact that we crowd in and breathe around each other. In my mind, any layer we can add to protect ourselves but also to protect our neighbors and loved ones — avoid crowds, keep safe distance, mask up — is worth the effort and sacrifice. We’re all in this together. This is a communal experience, and it’s going to take communal solutions to help us all through.
More doubts?
Yep. These are relatively new vaccines, and adverse side effects can and will happen. Medical treatment is not a one-size-fits-all approach. The AstraZeneca was cancelled for certain European age ranges last month, and I was well aware that Johnson & Johnson technology is similar to that vaccine. I knew I was taking a risk, and I was pretty rattled.
Would I do it again?
I’m really not sure. I’ve felt incredibly crummy and off for close to a week. April 13 the not totally surprising announcement was made that the CDC is halting Johnson & Johnson vaccines in the US due to rare but very serious cases of thrombosis in venous sinuses. Affected patients, thus far, are women my age. It’s scary. And even if the theoretical three-week window closes (fingers crossed) without me throwing a clot, we won’t know what the long-term effect of these vaccines is on the human body. For now, quite honestly, I’m dreading my next period. Based on how my pelvis is feeling and the clearly hormonal roller coaster this shot has me riding, I think I may be in for a rough go. All in all, I really can’t say that I’m feeling the buoyant exhilaration exhibited by other people in my life who got the shot/s recently and now want to shout “freedom” from the rooftops.
The upsides?
With the vaccine, we have another tool in our toolkit to protect ourselves and each other. Science does what science does. It’s not a perfect process and will require fine-tuning and, yes, sacrifice. We’re fortunate the vaccines have been rolled out fairly quickly in the US and are covered by insurance. Many countries are facing supply shortages and infrastructure problems that preclude efficient vaccine distribution.
We have a choice. We can choose to have the vaccine now. We can choose to wait until more reliable data emerges (especially in regard to at-risk groups, like people with autoimmune disease or hematological disorders). We can choose to do our part to help our community along and, hopefully, prevent the virus from spreading and mutating even further, by building some semblance of herd immunity, for however long or short it holds up.
I was lucky I had a choice in which vaccine to pursue. I may not have made the wisest one, given my experience thus far, nor picked the best timing for folks like me who have a myriad of health issues. But: I have friends and relatives in western Europe who have been frontline workers for over a year and still cannot get vaccinated. I also know that up until now, the advice to everyone here was to get the first available Covid vaccine and not hold out for a particular one. Given my experience, I disagree with that. We need more data on how the individual vaccines affect sub-groups of our population given gender, age, hormonal status, weight, immunosuppression, chronic illness, and other risk factors. Only time will tell, for me, you, and all those sweet souls who surround us.
Advice?
Talk to your providers, especially any specialists you see, about the pros and cons and unknowns for your particular situation. Ask relatives about their experience. Consider your options. Think about yourself and your community. If you get the vaccine: hydrate. Hydrate some more. Hydrate again and rest. And for crying out loud and all the love in the world, whether you get the vaccine or not: be vigilant about your social distancing and masking. It’s pretty much all we’ve got.
If you’ve had the vaccine and care to share, please do. A lot of people are talking about the side effects, but there is a dearth of personal accounts regarding the J&J vaccine since it was just rolled out last month. We can be that forum and information source for others.
