
I got my first COVID-19 vaccine dose!! Since so many people with ME have legitimate concerns about the vaccines, I thought it would be helpful to share my own experience.
Two weeks ago, I described the melee competition for vaccines in my area. I was prepared to wait however long it took, and I spent time every day going through all the possible options to get an appointment. A very kind friend made me an appointment for mid-March at a pharmacy in Philadelphia, but it wasn’t clear if the pharmacy was restricting the vaccine to city residents. Finding an appointment closer–and sooner–was my goal.
Then last week, I got an email from my county! My place in line had come up and I had a chance to make an appointment. The catch was that slots were only open during the next two days. That can be tricky for anyone’s schedule, and a more severely ill ME patient might need more lead time in order to rest and prepare. I was so eager for the vaccine, though, and 48 hours notice was doable for me. And I got an appointment for my husband too!
I know many people are concerned about the potential for allergic reactions to the COVID-19 vaccines, particularly if they have mast cell disease. I have mast cell activation syndrome, and it is generally well controlled by medication. The Mast Cell Disease Society recommends people avoid the vaccine only if you know you are allergic to one or more ingredients in it, or are otherwise advised by your doctor. They also recommend pre-medicating with your H1 histamine blocker one hour before the vaccine. My doctor concurred, so that’s exactly what I did. One hour before the appointment, I took an extra dose of my H1 blocker. Also on the advice of my doctor, I skipped my beta blocker the night before.
The vaccine process itself was a little overwhelming. Our appointments were at a local high school, and there were a lot of people there. The signage wasn’t great, so it wasn’t clear where to go to register versus where to wait for the shot. Fortunately, there were many volunteers directing traffic and answering questions. I was thrilled to see people volunteering to help! We’ve been so isolated for the last year that I had no sense of whether this was happening at all. Those volunteers were essential to keeping things running smoothly.
Once we knew where we were going, it was quick to get registered and in line for the vaccine. If you have mobility issues, including difficulties waiting in line, you might want to call ahead to your vaccination site. The entire place was wheelchair accessible, but there was no obvious accommodation for people who needed to sit while waiting. I’m sure a volunteer would have assisted if I needed it, but ask in advance if you have concerns.
Getting the vaccine itself was quick, of course. The nurse did ask me what my specific underlying conditions were, which caught me off guard. We had been told we would not need to disclose the conditions that qualified us for the shot. However, when I started listing them she said, “Oh ok, nothing that will interfere with me giving you the vaccine.” After the injection, she directed me to the observation area. She said, “If you start to feel any different than you do right now, raise your hand and someone will help you.”
The post-vaccination observation was self-timed, which I thought was interesting. There were volunteers watching over people and checking on them, but they weren’t timing us to ensure we stayed at least 15 minutes. One person felt faint and needed to lie down. I’ve heard from friends that this is not unusual, but I don’t know if feeling faint after this vaccine is common everywhere. Keep it in mind, though, especially if you have any orthostatic intolerance issues. Fortunately, I felt completely normal (for me) so we left after about 20 minutes.
Now to the after effects, which is what I think concerns most people with ME. A few hours after the vaccine, I got a headache and then crashed. I managed to eat something and then had to be horizontal. The same was true the next day. I had both muscle aches and random joint pain in places I don’t usually get it. And the malaise was no joke. I slept a lot, and was in bed most of the day. The good news is that the next day, I was approaching baseline. And since then, I have had a normal-for-me week.
The bottom line of my personal experience is pre-medicate with an H1 blocker, and prepare for one or more crash days post-vaccination. Most people (not just people with ME) report that the second vaccine dose triggers more intense side effects. I’m preparing myself for that to happen when I get dose two in a few weeks. For me personally, I am very willing to go through a bad crash in order to know that I won’t die or even be hospitalized if I end up getting COVID-19.
Have you gotten a COVID-19 vaccine? What was your experience like?
Vaccine Melee
The COVID-19 vaccine rollout has been uneven, to put it kindly. In my home state of Pennsylvania, it’s been a mess (that’s also putting it kindly). The actual situation has a lot more in common with a Black Friday scramble for a PlayStation 5. Or the Battle of Pelennor Fields.
Here’s how I thought the process would work: The federal government would send a supply of vaccine to the state based on population demographics, and the state would send it out to the counties. The counties would control distribution to providers (like pharmacies and hospitals) and also offer vaccinations direct to the community. People would sign up on one list with the county (or state), and then wait their turn as the vaccine supply increased from a trickle to a torrent. I thought we had learned from past mass vaccination campaigns.
I was naive, to put it kindly.
Here’s how it’s actually playing out here: The federal government sends a small fraction of what Pennsylvania requests, less than a quarter of the request in one recent week. No one seems to know how the feds decide how much to send. Pennsylvania then distributes that reduced supply to the counties and to providers who are willing to vaccinate, but the Department of Health has not explained how they decide how much each entity gets. The providers and counties then offer the vaccine to eligible people.
That sounds straightforward enough, although the low supply is an obvious problem. My county estimates that more than 200,000 people are currently eligible for vaccination, including both my husband and me. Last week, the county received only 3,900 first doses for the entire week. There is no public reporting on how many first doses were sent directly to other providers in the county. Two months into the vaccination campaign, less than 10% of those eligible have been fully vaccinated.
Yet the barriers to vaccination here extend far beyond the low supply. Pennsylvania decided not to create a central registry of people who want to be vaccinated, and no one has offered a plausible explanation for why. Instead, Pennsylvania left it up to the providers to figure out. Note that I said providers, not counties. Every single vaccine provider in the state has to figure this out, and there are about 1,700 participating providers.
If you want to get a vaccine from an independent pharmacy, you need to get on their list. If you want to get the vaccine from a primary care practice, you need to get on their list. Large health systems like Jefferson Health and Penn Medicine have their own obscure method and have told patients, Don’t call us, we’ll call you. The counties have lists too. Putting your name on the county list only gets you in line for a county-provided vaccine. The county list does not interface with the other providers. So everyone has to sign up with each provider as well as the county. While our county is encouraging people to get the vaccine anywhere they can and to sign up for lots of lists, the state is actually discouraging people from doing that (although no one has explained why).
Larger chain pharmacies are running a completely different process. Rite Aid and Walgreens and other chains don’t have waiting lists. They offer appointments through their websites, except it’s not clear when they post the new openings. You have to be lucky and looking at the website at exactly the right moment because the appointment slots disappear within seconds.
Then there is the problem of line jumpers. My county is using a state-provided program called PrepMod to manage vaccine sign ups and appointments. When it’s your turn to be vaccinated, the county send you an email with a link to make your appointment. But PrepMod doesn’t create unique single-use links. The links can be used by more than one person. So people are forwarding the links to family and friends and they can make appointments, too. Even if they are all eligible under the current vaccine phase, it still means they are jumping the line.
The end result is an absolute melee. Last weekend, an independent pharmacy announced it was opening 400 slots, and 15,000 people tried to get one. The appointments were gone in less than one minute. I managed to get my husband an appointment by some miracle, but not one for myself.
Individuals in Pennsylvania have to surmount multiple barriers to get vaccinated. First, you have to know what distribution phase you qualify for. Then, you have to decipher the decentralized process to even know where to start. You need access to the internet, and it really helps if you read and speak English. You have to sign up at as many places as you can find. If you can spend hours refreshing screens on your computer, you have an advantage. If someone sends you a sign up link, you have an advantage. If you know someone who knows a pharmacist, you might be able to skip the line altogether. People with access and means can get vaccinated, and they get other eligible people vaccinated. If you don’t have access to the internet or don’t understand the labyrinth, then you are not getting vaccinated right now.
This is due to a failure of leadership at the federal and state level, and is replicated to one degree another in most states. At some point I hope there is accountability for that. The current problems in Pennsylvania are well recognized and acknowledged by the county and the state. The county is trying to come up with a workaround to prevent line jumpers. The state now requires providers to offer some appointments by phone, and is concentrating the new supply among a smaller number of providers. Everyone keeps asking us to be patient.
Oh, I’m being patient alright. I check a long list of provider websites at least twice a day. I fill out the sign up forms at retail pharmacies every time, and then try to find a pharmacy within a 50 mile radius with open appointments. I check the county numbers to see if they have started scheduling people who signed up the day I did. I watch the weekly briefings from my county and the state, and I’m reading as much as I can in the news.
And I’m trying really hard to not let the search for a vaccine take over my life. It’s not healthy for me to refresh web pages for hours a day. I only leave the house about once a month, and I double-mask when I do go out. I know the vaccine supply will increase and eventually my turn will come. I’ll stay as safe as I can until it does.
But I can’t help thinking that there must be a better way.