pulmonary hypertension

Reassurance

Evelyn Herwitz · April 22, 2025 · 2 Comments

On Monday afternoon, I finally saw my cardiologist at Boston Medical. This was no small feat. I was supposed to see him back in December, six months after our June 2024 visit, per usual. But that appointment got cancelled, and I was told the next available appointment was not until early May. I reluctantly accepted, though it made no sense to have to go to the end of the line. Then, a few weeks ago, I got a call that the May appointment had been cancelled, and next available was the end of July. I took the date to get into his calendar, but I was not happy.

So, instead of just accepting the situation, I called my cardiologist’s assistant and asked if she could find out if he could slot me in. Apparently enough patients had also called that he added more clinic days to his schedule, and I saw him yesterday.

Given all the mishegas last month with my trip to the ED for spiking blood pressure—even as we had spoken by phone a few days later—I just needed to see him in person. He knows me really well, and he has a wonderful, calming demeanor. He also understands the role scleroderma can play in heart disease. My rheumatologist had ruled out kidney involvement for the high BP, at my insistence, even as it would have been a really remote possibility. But I needed to know: Could the spike be due to thickening of heart tissue?

While it is possible to run a diagnostic to investigate that question, he said the resulting data would not be definitive. But given that my BP has now stabilized on Losartin, he said that thickened heart tissue would not be the issue. If it were, then my BP would not have come down to a normal range.

While there is some stiffening of my heart, causing Type II Pulmonary Hypertension, it does not appear to be the causal factor for the BP spike. Most likely, he said, it was the OTC decongestant I took that day, which contained pseudoephidrine, which is a vasoconstrictor. Even if it never affected me before, he said I could have built up an intolerance.

Then there was the other big fear: With all the weird heart stuff, was I at risk of just keeling over from a heart attack? No, he said. You have no evidence of any electrical issues with your heart. From my echocardiograms, he added, your heart is actually quite strong. He’s told me this before, but I just needed to hear it again.

We joked a bit, and he told me if I ever need to see him, just call his assistant and she’ll fit me in. That, and his steady hand on my back as I said goodbye, was the best medicine of all.

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: Cathal Mac an Bheatha

Case Management

Evelyn Herwitz · July 18, 2023 · 4 Comments

I rarely cancel doctor’s appointments, even when I don’t feel like going. But I did that on Monday.

I was supposed to see my Boston Medical pulmonologist, the one who specializes in pulmonary hypertension, for a late afternoon appointment. This was a routine follow-up from February.

However, on Friday I had just driven into Boston for a midday appointment with my cardiologist, also a routine follow-up, this time from January. And since he has been my go-to for diagnosing my Type 2 pulmonary hypertension, and, thank goodness, the medication he put me on is working well, I just didn’t see the point of the Monday appointment. Why drive an hour-plus each way to wait and wait for a 15 minute appointment where I will tell the same story of my status and get the same (welcome, but not needed) reassurance from her that I’m doing okay, no changes needed? Especially if she can just read his notes in my chart.

This is not to say that I don’t value the pulmonologist’s time and advice. It’s just the schedule made the whole thing seem redundant. And Boston traffic during rush hour is no picnic.

I tried several times last week and again Monday morning to see if I could at least switch the appointment to telemedicine, but now that the pandemic is in the rear view mirror (thank God), that option is no longer readily available. So I rescheduled for September at a more reasonable time of day.

There are always stretches of multiple medical appointments in my calendar. Sometimes they are well-spaced, and sometimes they clump together, as they have recently. I still have another Boston Medical appointment for Thursday with my rheumatologist. Cutting out one more commute this week is the best way for me to conserve my energy while managing my own case. And to stay sane.

Image: Sunguk Kim

Chopin to the Rescue

Evelyn Herwitz · May 2, 2023 · 2 Comments

Last Thursday, I drove two hours in heavy traffic to Beth Israel Deaconess Medical Center in Boston to participate in a three-hour clinical study. As I wrote back in November, not long after I had a heart catheterization stress test, one of the cardiologists asked if I’d be willing to participate in a study to find a non-invasive alternative. I agreed, because the test was very unpleasant. If I could help to spare someone else that ordeal, I was willing.

So, after ignoring my GPS, which led me to the wrong side of the hospital, I finally found the parking garage and headed inside. (If you’ve ever been to the Longwood Avenue complex of medical centers in Boston, you’ll appreciate that this was no easy feat.) A pleasant research associate greeted me and reviewed the study protocol, which I had read in advance, so I knew, approximately, what I was in for: a six-minute walking test to establish my baseline, followed by an ECG, an IV insertion, a blood draw, then being hooked up again to an ECG for a 20 minute MRI, followed by up to 10 minutes peddling a recumbent bicycle, followed by a contrast dye infusion and another 30 minutes in the MRI. Not a cakewalk, but still better than the invasive procedure.

Now, I’m no fan of MRIs, which are loud and claustrophobic, and I was trying not to get anxious, anticipating THE BIKE. Last time I did this, I lasted three minutes before I felt really awful, because my pulmonary pressures skyrocketed. I was hoping that my new medication, more exercise in recent months, and better diaphragmatic breathing would all help.

So I really appreciated it when one of the researchers kindly asked if I’d like some music while in the MRI. I requested classical. “What kind of classical?” she asked. Really? You get a choice? I went for Chopin piano etudes, a favorite, and some of the most soothing music I could think of on the spot.

The walking test was easy. They set up two cones in a hallway of the research patients’ floor, and I kept a steady pace, back and forth, for the full six minutes with no issues. Ever the A student, I was pleased to know I was among the fastest walkers in the study, so far.

Then came the MRI. Lots of equipment to attach and adjustments to make as I lay on the bed that slides into the maw of that noisy monster. And, of course, it took two sticks to get a working IV in my arm, which is always the case. The final step was a set of earplugs to lessen the bangs and beeps, plus the headphones, and adjusting the volume so I could still hear Chopin. I hung onto every note of the beautiful melody as they slid me into the MRI and the study began.

The piano etudes were interrupted every few minutes by a recorded voice that instructed me when to breathe in, breathe out, then hold until I could breathe normally again. Beeeeep-bang-bang-bang-rumble-bang-bang-beep-beeeeep-bang. Ahh, Chopin.

I was glad when they rolled me out of the MRI, until the research tech told me that we weren’t done, yet, because the research software had crashed. Help was on the way. Fortunately, rebooting the computer solved the problem—and we were able to pick up where we left off. “Three million for the research software, but we’re still on a Microsoft platform,” he quipped.

Finally the first phase of MRI scans was completed and they rolled me out again, this time for THE BIKE. No headphones for this phase. I was on my own. I peddled up to the tempo they needed to boost my heart rate and made it through the first two minutes of resistance without a problem. “You’re like a metronome!” said the research tech. “Most people slow down and speed up.” “We aim to please,” I said, focusing on my breathing.

“On a scale of 1 to 10, how difficult is this?” asked another member of the team. I had trouble answering the question as she raised the resistance to the next level. “A 4?” I answered. Honestly, it was hard to assess while I was trying to manage my breathing. After about a minute at that resistance level, I began to feel some mild chest pressure, which I reported. I was able to finish another minute of peddling, and then they ended that part of the process. A good thing, because I could sense that I was going to start tanking soon.

Headphones back on, first dose of contrast dye infused, Chopin playing in my ears, I began to relax again—until the banging started up. At one point, there was some brrp-brrp-brrping that almost drowned out the music for what seemed like an eternity. I began to feel a bit claustrophobic, but at least could feel my legs outside the machine and even, sort-of, see them. The piano notes that I could catch were my buoy.

Finally, after a second infusion of dye and more banging and clanging, I was done. I felt a little shaky when I sat up, with help, but was soon able to walk back to the changing room and get dressed. They got the data they needed, and I survived without that awful shortness-of-breath feeling. I did my bit for medical science, and, I hope, for someone else down the line who can avoid having a mask with a breathing tub clamped to their face and a heart catheter threaded down their neck while peddling THE BIKE.

On my way out of the hospital, I rewarded myself with a glazed doughnut for the drive home. And just as I got back on the Mass Pike, what should be playing on my Sirius XM station? Chopin, of course.

Image: Accuray

Auf Wiedersehen

Evelyn Herwitz · March 28, 2023 · 8 Comments

And so, I made the trip to Germany. On my own, abroad, for the first time in my life. It was an extraordinary, transformative experience, not only for all that I saw and learned, and all the people I met along the way, but also for rediscovering that fearless explorer within, who has been hiding for decades since I first heard the word scleroderma.

As I’ve written here in recent months, the past couple of years with this disease have been more complicated. Finding myself suddenly short of breath when physically or emotionally stressed led to a battery of diagnostic exams, and ultimately a diagnosis of Type 2 Pulmonary Hypertension. Thanks to my wonderful cardiologist, I found a calcium channel blocker that works for me and mitigates the worst of the symptoms. I’ve also learned some new breathing techniques that help to avoid the problem when I start feeling stressed.

With all that, as I began to feel better again and moved past the worst of the pandemic, I felt a great need to get out—get out of my head, get out of my routine, and get out of the country to travel once more. I needed to prove to myself that I could do this on my own. Working on a novel about Germany during the Weimar Era and rise of the Third Reich, I had to see what I’d only been able to read about, and I needed to focus. I have family roots in Germany, as well. My mother and her parents immigrated to the U.S. in 1936 to escape the Nazis. So the visit was multi-layered.

As is always the case with travel, not everything went as planned. On both ends of my trip, I had to make last minute changes in my transatlantic flight—pushing back my departure from Boston by two days to avoid a Nor’easter that was threatening to wreak havoc with snow and high winds, and leaving a day early at the end when my flight home from Munich was cancelled due to a planned airport strike. (Yes, they plan strikes there, so you can work around it.) There were also two instances when the S-Bahn (commuter rail) in Berlin was running late or disfunctional, and I had to figure out how to grab a taxi to get to a tour on time. But it all worked out. And, to my amazement, I just rolled with it and problem-solved along the way.

For the most part, however, the trip was a wonderful journey, beginning with my seat mate on the way over, who was from Munich and gave me excellent suggestions for my two-night layover there. From Munich I flew to Berlin, where I stayed five nights in the very funky Hotel-Pension Funk, the former home of a silent film star that is decorated in period Art Nouveau style. I immersed in history, art, design, and architecture, including a visit to the Museum der Dinge (Museum of Things), where I learned about design standards as the country shifted from handcrafts to industrial manufacturing, and an outstanding private tour of sites and stories about Weimer Berlin. I also had dinner one evening with good friends and spent a day touring with them, as well.

From Berlin I traveled by train to Dessau, just under two hours southwest of Berlin, to stay at the Bauhaus, now a UNESCO World Heritage site. The Bauhaus School was in existence from 1919-1933, first in Weimar, then in Dessau, and finally for a brief period in Berlin before it closed under Nazi pressure. Founded by architect Walter Gropius, the Bauhaus melded art and technology to rethink how people could live and work humanely and cooperatively in post WWI society. I stayed two nights in what had been student housing, and toured the building as well as the outstanding Bauhaus Museum in the city.

From Dessau, I took a high speed train back to Munich, where I stayed at a small, very comfortable modern hotel in the Altstadt (Old City). My time in Munich at the beginning and end of the trip focused on why and how the Nazis formed there and gained power under Hitler. In both Berlin and Munich, I also visited concentration camp memorials—Sachsenhausen outside of Berlin and Dachau outside of Munich. Both tours were powerful experiences, sobering, profoundly thought-provoking. There is much dark history in Germany, but also a deep public reckoning with the past.

In Berlin, on Shabbat, I went to a synagogue that was a short walk from my hotel. The Pestalozzi synagogue was burned on November 9, 1938, on what has been called Kristallnacht, the Night of the Broken Glass, but is now referred to in Germany as the Reichspogrom—a more accurate description of the two nights when Nazis directed the destruction of synagogues and Jewish-owned businesses in pogroms throughout the country. Pestalozzi was not totally destroyed (burning it risked a neighborhood that the Nazis wanted to save) and was restored and rededicated after the war in 1947. It is a beautiful building, and the service felt much like ours at home.

Later, I realized that I was the first member of my family to set foot in a Jewish house of worship in Berlin in a century. It was one of the most important moments of the trip. I am still processing all that I experienced, and will be for some time. I am glad to be home, but I was also sad to leave. Most of all, I’m grateful to my dear Al, our wonderful daughters, many friends, and my entire medical team, who fully supported me on this adventure, and for the fact that I was able to thrive on my own.

Here are just a few images from my travels.

Nymphenburg Palace in Munich, where I walked the grounds to stay awake after my transatlantic flight.

Hotel Laimer Hof, my accommodations in Munich at the beginning of the trip

The breakfast room at the Hotel-Pension Funk in Berlin

Dishes and utensils at the Museum der Dinge, which reminded me of my grandmother’s china and flatware

Starving Sachsenhausen prisoners drew this on the walls of the camp kitchen’s potato peeling cellar.

Berliner Ensemble, formerly the Theater am Schiffbauerdamm, where Bertolt Brecht’s and Kurt Weill’s Threepenny Opera debuted.

Inside Friedrichstadtpassagen shopping center, former site of two famous clubs, the Weisse Maus and Cabaret of the Nameless

Theater des Westens. The basement housed the Tingel-Tangel Cabaret, which performed biting satire of the Nazis even for a few months after Hitler became Chancellor in 1933.

At the Berlin Hauptbahnhof, waiting for my train to Dessau

The Bauhaus in Dessau, view of the Studio Building where I stayed

Costumes for a Bauhaus dance performance, at the Bauhaus Museum in Dessau

Weaving at the Bauhaus Museum by Gunta Stöltz (1928), rewoven/restored by Katharina Jebson (2022)

Student notes from a Bauhaus class with Paul Klee, Bauhaus Museum

Bike rack on the high speed ICE train to Munich

The Neues Rathaus (New Town Hall) in Munich

Memorial to prisoners at Dachau Concentration Camp Memorial Site

Moonstruck

Evelyn Herwitz · December 6, 2022 · Leave a Comment

I’ve had an Apple watch for a while, now. I made the investment originally because it includes an ECG app, which has come in quite handy numerous times over the past year-plus, as I’ve been trying to understand my arrhythmia and related issues that finally led to a diagnosis of Type II stress-induced pulmonary hypertension. It helps to rule out atrial fibrillation and provides useful data for my cardiologist.

My watch is useful, too, for tracking exercise, and keeping me aware of when I’m getting too sedentary. As I exercise, I can monitor my heart rate, which is important feedback for me as well as for both my cardiologist and pulmonologist, who have given me some guidelines for my ideal range.

All of this is good and valuable for my health. But here’s the fun part: the watch face. You can choose from a variety of styles, and my latest favorite tracks the phases of the moon throughout the month. I’ve paired this with the Hebrew calendar, which is tied to the lunar cycle, and am now more aware of why Jewish holidays arrive when they do.

The neatest part (I really do geek out on this stuff) is that the moon image on the watch changes phases with each day. As I write on Monday afternoon, it is four days before the full moon, and so the moon on my watch is waxing, with just a sliver of dark along the left edge. So, of course, now I’m comparing it to the moon in the night sky. The image on my wrist is remarkably accurate.

I’ve always found the moon to be a comfort. On a clear December night, it gleams like a diamond on black velvet. Illumined by the hidden sun, it still seems to glow from within, radiating calm. However far I travel from home, it’s right there, guarding the night. Even as it reveals itself and recedes from view over a month’s course, it is ever present, repeating its game of hide and seek over and over, throughout millennia.

So, now I carry the moon on my wrist, a reminder of the constancy of change, my own little oasis of calm in the night.

Image: Mason Kimbarovsky

pulmonary hypertension

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