Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Inhale Exhale

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It’s been three years since I’ve had a complete series of pulmonary function tests. Last year, my new rheumatologist here at home ordered a PFT, but when I had the test done, I quickly realized that this was not the full series I was used to.

So on Monday, in order to have comparable data, I redid the test with the full set: spirometry, which measures how much air you can breath in and quickly exhale; diffusion, which determines how well the oxygen in the air you inhale moves from your lungs into your blood; and body plethysmography, which tests how much air is in your lungs after you inhale deeply, and how much is left after you exhale as much as you can.

These tests are never easy. They have gotten more challenging over four decades, which is to be expected. But my results are not normal. Though I don’t, fortunately, have interstitial lung disease that can result from scleroderma, I do have enough scarring to reduce my lung capacity. Which is why it’s so important to keep track of any changes.

Covid has complicated PFTs. First of all, you need a negative PCR test to even do the exam (can’t risk exhaling Covid droplets and spreading the virus). In addition, appointments are harder to get because of protocols that require test rooms to be vacated for 30 minutes between patients.

When I arrived at the hospital, I was first taken to a room without the plexiglass box (kind of like a phone booth that you sit in) that is required for the plethysmography. I told the respiratory therapist about the lack of a complete series last time, that I needed to be in the box. Fortunately, they were able to switch rooms to the right one after waiting a few more minutes for it to be deemed safe. (This was also helped by the fact that the scheduled patient didn’t show up.)

A second respiratory therapist handled my full set of PFTs. Before we began, she had to don a full blue plastic gown, gloves, two masks, and goggles. Definitely a riskier occupation these days. Then we started. I had to repeat the spirometry quite a few times, because I couldn’t do it without coughing. After several aborted attempts, she had me inhale a dose of Albuterol, which ultimately helped me to complete the test, but gave me the jitters.

The other two tests also required several tries until I could produce consistent results. All told, it took about 45 minutes. And, not surprisingly, my lung capacity over the past three years has declined a few points, down to 82 percent. Some of this is due to aging, but I can also tell, from how much trouble I have completing the tests, that it’s just getting harder with time.

At least it’s done. And I worked most of the Albuterol jitters out of my system by afternoon, though the breathing benefits persisted. Which was a nice side benefit. So it’s done for at least another year, maybe two. My lungs are far from perfect, but also far from limiting me, as long as I stay active and exercise. Still a lot to be grateful for.

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: Kind and Curious

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

Time for a Break

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No big travel plans for this summer, once again. But we’re trying to make the most of day trips. Two weekends ago, we spent a beautiful day in Rockport, Massachusetts. I hope you enjoy the view.

I’ll be taking a break from this blog next week, back on August 24. I hope you’re finding time to savor good weather, travel safely, and relax, too. Be well.

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.

#24

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More than two years have passed since I last had a tooth extracted due to a complication of scleroderma that causes my immune system to attack the roots of my teeth. But, once again, another one had to go. This time, it was my lower front left tooth, known to dentists as #24.

I’ve had two implants so far. My dental team and I have been tracking another four teeth at risk. At my last cleaning, my hygienist noticed that 24 looked pink at the bottom, indicating the tooth was hollowing out and blood was seeping inside. An X-ray confirmed the extent of the resorption.

At that point, surprisingly, I was not experiencing any nerve pain, given the damage. A consult with my periodontist left timing of the inevitable procedure up to me. I also saw my dentist to discuss the situation, have a new panorama X-ray taken, and figure out where things stood. The other three teeth have not progressed as far, fortunately, so I’ll just continue to deal with them one at a time. But after about a month, I realized 24 was getting more sensitive. I heal faster in summer, so it was time to take care of it.

And so it was, last Wednesday, that I found myself, once again, slightly upside down in my periodontist’s exam chair, trying not to get anxious as I awaited the first shot of Novocaine. Fortunately, the topical anesthetic that preceded the shots worked expeditiously, and the Novocaine took hold quickly, too, so I was spared much discomfort. But I still hate those needles.

Since the tooth was up front, the procedure was somewhat easier than for the past two molars. Just one root instead of multiples, and no overstretching my mouth to get in the back, which is very uncomfortable. But as has been the case before, the ligaments that form a sock around the roots, making it easier to pull, were dried up, so the root was fused to my jaw and had to be drilled out.

The whole process took about an hour, half the time for previous molars. I did my best to stay in the moment, breathe, and listen to Vivaldi streaming on the music system. I recognized one of the pieces that I used to play on my violin in high school. It was a relief when my periodontist finished the last stitch and I could get out of that chair.

Residual pain, once the Novocaine wore off, was, thankfully, minimal and manageable with over-the-counter pain meds. Swelling subsided within 48 hours, thanks to a lot of icing that first day. I can eat without much trouble.

The one mistake I made was assuming the missing tooth, given that is was in my lower jaw, would not be noticeable. Alas, I look like Alfred E. Neuman, except on the bottom. So, I’m going to have a “flipper” made, which is a false tooth that is removed when you eat. Given that this whole procedure, from extraction to implant to crown, will cost about $9,000, with no insurance coverage (outrageous!), the additional $350 for the flipper seemed a drop in the bucket. I really don’t want to live with a gap in my teeth for nine months until I get the crown. I’m not letting scleroderma get the better of how I look and feel about my appearance. Some might call it vanity, but I call it self-esteem.

And there’s a silver lining. Once again, by charging payments on my travel credit card, which we always pay off at month’s end, I’ll at least get more points for whenever we can finally take another extended vacation safely, without fear of Covid complications. Hoping that’ll be at least by next April, when 24 is fully replaced.

Sooner would be better.

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: Photo courtesy of Gratisography

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