Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

Booster

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Last Thursday afternoon, on my rheumatologist’s recommendation, I got my third Moderna vaccination. CDC guidance has been confusing of late regarding boosters, but for people who are immunocompromised, the advice has been fairly consistent to get a third shot. Just who qualifies as immunocompromised, however, is also subject to interpretation.

People who are receiving active cancer treatments, have received organ transplants, stem cell transplants, have advanced or untreated HIV infections, or are receiving high-dose corticosteroids or other drugs that suppress the immune system are advised to get the third shot. In general, the CDC recommends that anyone “moderately or severely immunocompromised” get the booster now, because of Delta’s high contagiousness and questions about whether immunocompomised people have been able to mount a strong enough response to the first two doses.

Still, scleroderma was never on the initial list of conditions for the first round of vaccines back in the winter. So I wasn’t sure what would happen when I went to my local pharmacy to get my booster.

The first obstacle I ran into, however, wasn’t about whether I qualified. It was about what shots were offered. My local Walgreens, where I get all my prescriptions, only gives out Pfizer, as it turns out. So I went home and went online to see where Moderna shots were offered. The pharmacy at my favorite supermarket was listed as giving all three—Pfizer, Moderna, and Johnson & Johnson. But when I got there, that day they were just giving J&J shots. So I called another Walgreens that my local store had mentioned, and, indeed, they had Moderna and were giving boosters.

Three’s a charm. Not only did they have the right vaccine for me, but also, their consent form had a category of “other” autoimmune diseases, so I could honestly check that box. I had told them that my rheumatologist recommended the booster, which helped, too.

As for the experience of getting my third shot, I did not have as strong a reaction as I did the second time: no Covid rash on my arm, less fatigue. I was able to get stuff done that evening and next day. However, my joints flared, once again, and my Reynaud’s went into high gear. My rheumatologist had told me to try to avoid analgesics, like ibuprofen, because there are some indications that they can suppress the immune response in the first few days. I waited as long as I could, but I really needed the meds for my joints or I wasn’t going to get any sleep.

By Saturday morning, I felt like myself again. It’s now been almost two weeks, and I’m feeling more confident that I’ve done what I could to protect myself and those around me. I still wear a mask everywhere when I am indoors or in an outdoor crowd. I suspect we’ll all need to be doing that for some time to come.

I hope you, too, Dear Reader, consult your specialists and determine when and if it makes sense for you to get a booster—or your initial dose(s), if you have not already. Together, we can beat this terrible pandemic. Together, we must.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Ivan Diaz

Reality Check

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This past week of news about the Delta variant and breakthrough Covid infections for people who are fully vaccinated has caused me to reassess. A study released last week by Israeli scientists about the effectiveness of the Pfizer vaccine indicates that, while it remains a strong shield against severe Covid, it is just 39 percent effective against infections from Delta. The data sample is much smaller than an earlier Israeli study of the vaccine’s effectiveness (which found Pfizer to be 95 percent back in January), but the implications are certainly worrisome.

For the unvaccinated among us, Delta is a true health risk. It is highly contagious, transmitting a thousand times the viral load of earlier variants and has a shorter incubation period. The vast majority of people now hospitalized with Covid in the U.S. are unvaccinated, and infection rates are on the rise again throughout the U.S., particularly in regions where people have been averse to vaccination.

But breakthrough cases worldwide are on the uptick, too. Last week, the Dutch equivalent to our CDC reported that 9 percent of all Covid cases recorded in the Netherlands were among fully vaccinated individuals, and 14 percent of the cases involved people who were partially vaccinated. Note, too, that the fully vaccinated can still transmit the Delta variant without knowing it, if they are asymptomatic, increasing risks to the unvaccinated.

Again, the main vaccines here in the U.S. remain effective against severe Covid, thank goodness. But I have also read of people getting Covid when fully vaccinated who get sick enough to be out for a week, or who lose sense of smell and taste. “Mild” Covid is still no picnic.

All of this leads me to be more cautious, once again. So frustrating, just as we were all just beginning to feel relieved this summer. But I’m back to wearing a mask in stores and avoiding indoor restaurant seating. If we make it to a baseball game or other crowded outdoor venue, I’ll be wearing a mask in the stadium, because there will be no way to socially distance from other fans. No airplane trips in my immediate future. If, as is now being discussed, those of us 65 and older are advised to get a booster shot—effectively a third dose of Moderna, for me—I will be first in line.

Like it or not, we’re all in this together. I need to protect myself, my family and friends, and strangers, too. Stay safe out there.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Donald Giannatti

Fear of Flying

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I subscribe to a great travel website, Scott’s Cheap Flights, that lists best airfares on reliable carriers for international travel. Lately, more and more destination deals are landing in my in-box, and Scott’s has consistently published flights with good cancellation policies during the pandemic.

But I’m still not ready to make any long-distance vacation plans. Not for this summer, anyway. I have my sights set on October, when I suspect the Delta variant will be better understood and any new rounds of restrictions will be in place. But who knows? I’ve read about even more variants emerging. The real question is whether the vaccines continue to hold up, which so far, they have, thank goodness.

It’s easy to fall into a default of staying put. As Delta surges in communities that have resisted the vaccine, and as vaccine rollout around the world remains much slower than in wealthier countries like the U.S., which have more resources to purchase doses, there are more chances for this opportunistic virus to morph into more resistant strains. We’re in the midst of a huge public health experiment, if you will, without consistent vaccine protocols and availability worldwide. The risks remain very real. I am convinced we will be living with some form of Covid for many years to come, though I hope it will eventually become endemic, just as the Spanish influenza pandemic of 1918 was the precursor of the flu we all have learned to live with. Vaccines are key.

But I also don’t want to become so fearful that I never get on a plane again. Obnoxious passengers who delay flights because they refuse to cooperate with mask mandates are an unpleasant prospect, certainly. Can’t let them control the skies. My strategy at present is to start researching a prospective trip in August for October, make sure I find flights and places to stay with flexible cancellation policies, travel only to locations where Covid rates are under control and good medical care is available, and to get comprehensive travel insurance.

I’ve made the leap of getting out in public without a mask where CDC and Massachusetts guidelines allow, have even begun eating inside in restaurants, again. It’s time to start dreaming of visiting far-away places, with reasonable precautions. We’re blessed with the resources to make this happen. Now I have to push farther out of my “comfort” zone and just do it.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

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Tunnel’s End

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On Saturday, May 29, Massachusetts lifted most of our pandemic restrictions. In celebration, the TD Garden was packed for the playoff game between the Boston Bruins and the New York Islanders—which the Bruins won handily, 5-2.

I am not an ice hockey fan, nor would I feel safe going to an indoor arena filled to capacity, regardless of the sport. Too big a risk, too soon, in too huge a crowd. Outdoors, however, for a baseball game in good weather at the new Minor League stadium in our fair city, yes. Looking forward to that sometime in the not-too-distant future.

A week past Al’s clearance from Covid quarantine (he caught a mild case despite being immunized), we’re both doing fine, thank goodness. And the fact that I never caught it from him, due to the vaccine, has definitely given me more confidence—enough to venture indoors to a restaurant with my daughters on Sunday for a belated Mother’s Day meal. Our eldest has been immunized for months, and our youngest was finally able to get both Moderna vaccinations from the university where she works near Philly. So she came for a long Memorial Day weekend, and the three of us had a ladies’ luncheon, their treat.

It was great to get together, and it was also great to sit in a restaurant without worrying about taking off my mask. The place was busy, plenty of people, but still some spacing between tables. We sat near glass doors that did not close completely, so we also had a source of fresh air.

What surprised me was how close to normal it seemed. The waitstaff were still in masks and gloves, which I appreciated. But otherwise it felt like it’s always felt to eat out. Our focus was on the food and conversation, not on any worries about safety. I will be thrilled to put my mask collection away sometime over the summer, when the data confirms the wisdom of eased restrictions, as cases and deaths continue to decline with increased vaccination rates.

Al’s situation going forward is a bit uncertain, however. Given that his immune system is somewhat compromised, we need medical guidance about when/if it would be truly safe for him to go unmasked in crowds. Does the fact that he caught mild Covid and recovered after being fully immunized actually add to his protection? Or does it all depend on the variants that are still evolving? We don’t know, but I hope to get answers soon.

Our experience over the past couple of weeks is just one small example of how vigilance remains essential for those at greater risk, even as the light at the tunnel’s end is now visible. Memorial Day commemorates fallen soldiers, but we’d also do well to remember the 594 thousand Americans who have died from Covid since the pandemic began over a year ago. That’s more than the total number of soldiers who died in World War I, World War II and Vietnam, and on 9/11. And there are still people hospitalized and dying from this terrible disease.

As we venture out of our Covid cocoons, even as we revel in unmasked spaces, I profoundly hope and pray that the majority of my fellow citizens have learned to be more thoughtful about the health and well-being of others still at risk. Please get the vaccine if you are able and have not already, so that this very dark chapter can finally close and we can all, at last, safely move forward.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Robert Bye

This Is a Test

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Last week, our home became a testing ground for the efficacy of Covid vaccines. Al was vaccinated back in February, and I was fully immunized by the first week of April. He got Pfizer, and I got Moderna. We’ve been feeling quite confident and relieved since then, although we both still mask in public, as required.

However, for much of April and May, Al has been coughing. At first, I thought it was just a morning thing, but right after Mother’s Day, his cough got worse. By the next weekend, he was clearly not feeling well. No fever, but I suspected bronchitis. So a week ago Monday, he went to the doctor. Sure enough, he had Covid. While he could walk outside and even ride his bike if he wanted, he could not be around other people (except me) and had to work from home.

I, in turn, had a Covid test the day after Al was diagnosed, and was—thank goodness—negative. I took over all the grocery shopping, errands, and meal prep, which we usually share. I’ve felt fine the whole time.

Fortunately, his symptoms steadily improved. He never lost his sense of smell or taste. As all the research has shown so far, the vaccine most likely spared him from a severe case of the virus. By the end of the week, he was hardly coughing at all, and yesterday, he was cleared to be out of self-quarantine.

He was called twice by the Massachusetts Covid contact tracing team, to see how he was doing. We had already notified everyone we had been in contact with in the recent past. But I was impressed by their follow-up and grateful that we have a good system in place here.

So, how is it that Al caught the virus, even though he was fully immunized? Chances are because he doesn’t have a spleen, which is a critical organ in the body’s immune system. Years ago, when we were first married, he contracted a severe case of mononucleosis—not a terribly big deal for young people, but quite a big deal for a 35-year-old man. His spleen ruptured and had to be surgically removed. He came home from the hospital the day before our first wedding anniversary.

While bone marrow compensates for the spleen in a case like Al’s, I am making an educated guess (no research at present to define the relationship between lack of a spleen and Covid vaccine efficacy) that he probably has not been able to produce the full level of antibodies in response to the vaccine. However, current research does indicate that even in breakthrough cases like Al’s, he both had a milder case and also shed less of the virus because he was fully vaccinated. And apparently, my vaccinations have given me enough protection for whatever I was exposed to. Thank God.

I shudder to think what might have happened if he had be infected before being vaccinated. He is more vulnerable than either of us realized. Which also goes to demonstrate how effective masking and basic public health measures are in protecting us all.

Moral of the story: Vaccines do work, even if not perfectly. We dodged a big bullet. And I am very grateful that we’re both okay, as well as others we saw recently. If you haven’t been vaccinated yet, please—for you own sake and those you love—go get it. And be sure to exercise caution around others who may have compromised immune systems, regardless of your immunization status. We truly are still all in this together.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Mufid Majnun