Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

The Heart of the Matter

· · 4 Comments

So, things have gotten a bit more complicated health-wise. For more than a decade, maybe 15 years, I’ve occasionally had an espisode when I’ve pushed myself to exert physically—running through Penn Station in New York to catch a train, hustling through a huge international airport to make a flight connection—and have gotten weirdly out of breath. Not the normal huffing and puffing from running, but actually finding it hard to breathe. And for all these years, the working hypothesis has been that I have exercise/stress-induced pulmonary hypertension (PH).

PH is a known late stage complication of scleroderma, and my cardiologist has monitored me for a long time via regular echocardiograms, which have shown normal pulmonary pressures, for the most part. I’ve also had many, many pulmonary function tests over the years to check my lung capacity and diffusion rate. But over the past year, in particular, these episodes have happened more frequently, with the added bonus of feeling like I’m going to pass out. Fortunately, that has never happened. But it’s become quite worrisome. I’ve also had a heart arrhythmia for many years that has gotten more pronounced.

So, I’ve had a series of heart diagnostics, including a Holter monitor study, a heart MRI, an echocardiogram stress test, and a couple of weeks ago, the gold standard for PH, a right heart catheter stress test. This was not fun. It involves having a catheter inserted into the vein on the right side of your neck, which is then threaded into your heart and the pulmonary artery to the lungs. Your mouth and nose are covered with a tight mask and breathing tube, which collects data on carbon dioxide exhalation, and you have to pedal a recumbent bicycle until you can’t anymore. I lasted about four minutes before my breathing became difficult.

After three conversations with three of my specialists (PH pulmonologist, rheumatologist, cardiologist), the diagnosis is clear. I have Type 2 exercise/stress-induced pulmonary hypertension. Unlike Type 1, which involves changes to the pulmonary artery, Type 2 involves stiffening of muscle on the heart’s left side. Basically, as I understand it (and it’s taken some time to wrap my head around all this), when I exert too fast or get really stressed, my blood pressure spikes, my heart rate increases, and although my heart does a great job of contracting to pump blood to my lungs, it cannot relax readily—kind of like a clenched fist that can’t easily release—which then causes my pulmonary pressures to spike, some fluids to leak into my lungs, and the shortness of breath and near fainting.

It’s a lot. The standard treatment is to go on a diuretic, which is what my new pulmonologist prescribed, with follow-up blood work and appointments to monitor potassium levels and how I’m doing. However, and here is one of the big lessons of this experience: while very knowledgeable, my new pulmonologist doesn’t know me, yet, and we didn’t have enough time to talk, due to her schedule getting backed up, so I never got to ask a basic question. If I have Sjogren’s, which causes severe dry eyes and mouth, how would a diuretic affect me? Also, she only read the most recent stress test results, and not the rest of my heart work-up.

So when I saw my long-time cardiologist the next day, I asked him, and he nixed that plan and put me on a calcium channel blocker. He said my other heart diagnostics had shown I am not retaining fluids in my heart, and a diuretic like Lasix, which she had prescribed, would probably leave me feeling pretty crummy and dehydrated. The calcium channel blocker is supposed to relax my heart, lower my blood pressure (which has been all over the place) and slow my heart beat, also possibly ease some of the arrhythmia.

Even on the first day of taking my new medication, which is time-released over 24 hours, I began to feel better. Only had a slight headache, and by day two, that was not noticeable. By weekend’s end, I was marveling at the fact that my heartbeat seems to have faded into the background, for the most part, and is not demanding attention as it has been for months now. So, off to a promising start.

I’ve chosen not to write about this until I had a clear diagnosis and some answers. There is no way to know, without a heart biopsy, which I have no intention of doing since the information wouldn’t change my treatment plan, whether scleroderma is the cause of the stiffening of my heart. But it’s likely a culprit. No cure. My approach is to work with my team on the right balance of medication, increase my aerobic exercise as tolerable, and also try yoga to see if it helps me with meditative breathing, strength and flexibility.

I’d be lying if I didn’t admit it’s been scary. The diagnosis last week was quite sobering. I’m grateful for my medical team, and that I have a very experienced and knowledgeable cardiologist who really respects me and knows my history. He also has the calmest voice and manner, which was incredibly soothing when we met on Friday. Scleroderma is complicated. You have to advocate for yourself and build a trusting relationship with medical professionals. And while there is no cure, yet, there is medication that certainly helps.

There is also a lot I can do to give myself the best odds of managing this evolving disease process. That’s been my strategy for the past four decades—living with scleroderma, not letting it run my life. And that’s what I intend to continue doing.

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: Jamie Street

New Tree, New Year

· · 2 Comments

Friday afternoon, we planted a new tree in our front yard. Ever since our city-owned Norway maple dropped a huge limb across the street this summer, I’ve wanted to make up for the loss. So we are now the proud parents of a persimmon sapling, which will (we hope) bear some tasty fruit in three to four years.

It seems a fitting way to begin the fall season—and a fitting way to mark the Jewish New Year, Rosh Hashanah, which began Sunday evening and continues until sundown tonight.

Planting a tree suggests many metaphors, for life, for abundance, for repairing our world. On a more personal level, I just happen to be a tree lover. The variety of species, alone, never ceases to amaze me or to remind me of the incredible diversity that makes our world so exquisite. Our persimmon has smooth, shiny green leaves that will turn a deep orange later in the season. When mature, it will reach ten to twelve feet in height and crown diameter.

Soon enough it will be whipped by wind and snow, but our landscaper, who specializes in sustainable, edible plantings that are appropriate for our region, assures me that it will sprout stronger roots in response to whatever fall and winter bring. So I will soak it twice a week and undoubtedly worry if the weather turns harsh and watch it adapt and grow.

It’s hard to believe that such a thin stalk will provide shade and food in a few years. But the act of planting a tree is an act of hope. And so, Dear Reader, whenever and however you mark the year’s turn, take heart. And consider planting your own tree.

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.

Almost Autumn

· · 2 Comments

With Labor Day behind us and schools here already in session, it’s starting to feel like fall. The maples on our street began to drop leaves, a few at a time, in mid-August. A week post our vacation, the days are noticeably shorter, with sunset at about quarter past seven.

I find this time of year bittersweet. It’s hard to let go of summer, even as it’s a relief to be out of the 90+ degree Fahrenheit heat wave and soupy humidity of the weeks before our travels. At the same time, with schools in session, everyone back from vacations, and the Jewish New Year right around the corner, fall is always about new beginnings. Even as trees go bare, they are storing sugar for the long winter ahead and forming new buds.

We have one more big family celebration coming up this weekend, and then it’s time to focus, once again, on work and writing and election season, on putting away summer clothes and getting back into layers, on birds migrating south and trees hardening off. I’ve gotten away with only my thumbs in bandages for several months, and I know that is about to change as the temperatures drop and more ulcers appear. So it goes.

To everything there is a season . . .

(Click the link, above, if you can’t see the embedded video of Turn! Turn! Turn! with Judy Collins and Pete Seeger.)

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.

Rescue Mission

· · Leave a Comment

As you may have guessed by now if you follow my blog, I’m a bit of an amateur naturalist. Learning about all kinds of plants and creatures gives me joy. Sitting on our deck when I’m writing longhand (best way to pour out the first draft of a story), I love to watch the birds at our feeder and other wildlife going about their day (which can also distract me from my writing, or help provide the pause that summons the next sentence). Our feeders hang outside the kitchen windows, my favorite view as I eat breakfast or lunch.

So, I can report, with delight, that we saw another hummingbird on Sunday, pale olive green with a lemon yellow breast. It hovered and sipped, zipped away, then returned for another drink. I wasn’t nearby for other visits, but the nectar level in the feeder was slightly lower by evening.

However, apparently the hummingbird’s activity attracted some other visitors—bees. As we were leaving the house Sunday evening, I noticed them investigating the feeder. By the time we returned, there were no more bees crawling around it. They had all managed to fall inside.

What to do? Bees are important pollinators, essential to world food supplies, and honeybees are in serious decline due to a variety of factors, especially use of pesticides and other agricultural chemicals. At first I thought they had all drowned, but when I tapped the feeder, they started swimming. Then they started humming. It was as if they were calling for help. (Yes, I’m a softy with a writer’s imagination. But still possible.)

My hands are not facile enough to simply pick up the feeder and dump the contents, especially at risk of getting stung. But with salad tongs and long plastic kitchen spoons, I managed to unhook it and spill it on the ground. When I checked back a while later, most of the bees were still curled up on the grass, but at least one was wobbling about. The next morning, they were all gone. So either some other critter came along and had a feast, or they slept off their sugar high, dried out, and flew away. I hope the latter is true.

A little online research turned up a few ideas to avoid a repeat: diluting the sugar water solution to a 5:1 ratio, still sweet enough for the hummers but not as appealing to the bees, is my next step.

And so, Dear Reader, I hope you find some inspiration and fascinating drama in your own back yard. I’m taking a break for the next couple of weeks and will be back at the end of August. For those in the northern hemisphere, savor the rest of summer, and if you are down under, I hope the end of winter treats you 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.

Image: Leandro Fregoni

Fleeting Moment

· · 4 Comments

For Mother’s Day this year, my daughters gave me a hummingbird feeder. I’ve never had one before, and it takes some tending, but in the weeks since, I have faithfully made a sugar water solution (1:4 ratio) and hung the feeder on the corner of our deck, changing the nectar every few days so won’t spoil, and waited.

And for many weeks, no hummingbirds came to visit. I checked migration maps. Plenty of sightings in our region. But none here at home.

That is, until a week ago Sunday. We were sitting out on the deck with family, when all of a sudden, my cousin startled. A hummingbird had just hovered by the feeder. I had my back turned, though everyone else saw and marveled. Soon, it returned, along with a second hummingbird. This time I turned in time. Tiny, jewel-toned, they hung in the air, wings a blur, then zipped away toward a high branch of a Norway maple. Miraculous.

I made certain to change the nectar that night, so it would be fresh for the next day. Sure enough, Monday morning, the gold breasted hummingbird returned for a sip. I saw it a couple of times. But neither of these tiny fliers have returned, since.

I’m not sure if it has to do with the extreme heat of recent days. I’ve changed their nectar frequently, because it can easily spoil in 90+ degree weather. Still, no hummingbirds.

I hope they return. Hummingbirds are territorial, especially the males, and they remember location of feeders. Such beautiful creatures. Even if only for a moment, so worth the wait. A stunning reminder that each moment is precious.

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: Ramona Edwards