Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

On a Lighter Note

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I am back home since last Tuesday evening, our daughter is on the mend in Philly, thank goodness, and I’m nearly caught up with work, writing, volunteer activities, and keeping up with everything else that I need to keep up with. So, it was definitely time to do something fun this weekend. Al is skilled at finding hidden gems that are not far away, and for Father’s Day, he suggested we visit Forest Park in Springfield, Mass., one of the nation’s largest municipal parks, built in the late 19th century. I’m a fan of park design from that era, so we were were good to go.

I added to the mix another suggestion: a visit to Springfield’s The Amazing World of Dr. Seuss Museum, which commemorates the life and whimsy of Theodor Geisel, aka Dr. Seuss, one of Springfield’s most celebrated citizens. And that turned up another fun fact: Springfield has four other wonderful museums in the same lovely location, and admission to one is admission to all. So we added in a visit to the Michele and Donald D’Amour Museum of Fine Arts.

The best part of the Dr. Seuss Museum was having Al read to me, in his inimitable way, two books that neither of us had ever read before: There’s a Wocket in My Pocket! (1974), replete with delightful made-up rhyming words about a surprising cast of creatures hiding in a little boy’s house, and I Had Trouble in Getting to Solla Sollew (1965), an odyssey of mishaps that pokes fun at the idea that anything in life is free of troubles. Too true.

My favorite painting at the D’Amour Museum was a powerful acrylic on paper, Disappearing Forest 1, by Marlene Yu, all the more meaningful, given the Canadian wildfires. Then there were roses in Forest Park and the mysterious sphynxes guarding the dramatic mausoleum to Everett Barney, who donated much of the land for the park.

As always, I hope you enjoy my photos from our day. And watch out for those Wosets in your closets. . . . They’re actually rather charming.

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.

Things Get More Complicated

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As I write on Sunday afternoon, I am once again back in Philadelphia—where it has been mostly, but not always sunny, due to wildfire haze from Canada. Our younger daughter is on the mend, but not without a major complication last week, after we drove back to Massachusetts, which made all too clear the weaknesses in our nation’s health care system.

Last Tuesday morning, when my daughter got up, she noticed that the right side of her jaw was more swollen than it had been when we saw Dr. B Jr the day before. We assumed it was just part of the natural healing process, post surgery, as we’d been told that there is often more discomfort several days out from the procedure. I had not slept well that night, anticipating the six-hour drive ahead, but had eked out just enough rest to go. She really wanted to get back home. So, we left.

A good mix of ’70s road trip music buoyed our spirits, and we took several breaks along the way for me to eat and her to drink the protein shakes I’d made in advance and transported in a cooler. We arrived safely but exhausted, around 7:30 that evening. By this time, her jaw looked more swollen, but it was too late and we were both too tired to get to urgent care to have it evaluated. Our working hypothesis was that the steri-strips over her incision were inflaming her skin.

The next morning, she called Dr. B Jr, who would have seen her if we were still in Philly, but advised her to restart antibiotics, and if there was no improvement, to get back to Philly on Thursday for an exam. He also said to go ahead and remove the steri-strips and the superficial suture in her neck, as he’d explained at our Monday visit.

We both slept well. By Wednesday evening, she was rested and in good spirits as we were having supper together, when, all of a sudden, I noticed what I thought was a loose scab at the end of her incision. Within seconds, it morphed into a gushing stream of putrid brown goo pouring from her neck. I tried to help her stanch the flow, but there was no stopping it, even with a towel pressed to her neck. With Al giving directions, I raced her to the ER, which fortunately  took only 10 minutes.

Because she was triaged as having a neck injury, she got a bed right away and priority attention. But here is where the downside of American health care comes into play. It turns out that there is no oral surgeon on staff at our hospital, nor at the other major trauma center in our city. Nor is there any oral surgeon at any of the hospitals in the greater Boston area, with the exception of Tufts in Boston, which has a dental teaching program. Because our hospital could only treat immediate symptoms but not fully evaluate her, the plan was to drain as much as possible from the infected abscess in her neck, infuse her with strong antibiotics, do a CT scan to determine how far the abscess had traveled internally, and then transport her by ambulance to Tufts, if they would accept her.

All of this seemed extreme to me. Why would she need to be transported an hour away and admitted to Tufts for this episode? Why couldn’t we just stabilize her that night and then drive back to Philly the next day, to continue care by her surgeons? The ER docs explained that if anything went wrong on the drive, and we thought the doctors had said it was okay, then there would be a problem (e.g., they could be sued for malpractice, though that wasn’t explicitly stated).

I was also worried about her insurance, because she was out-of-network for her coverage. While we waited for her to come back from the CT scan, I asked if they had any idea how much this was already costing. On top of the ER visit, an ambulance transfer to Boston plus a second hospital intake, plus a potential hospital admission and maybe a procedure would have easily run into high five or even six figures, with no way to know how much she would be billed after the fact. Of course, if she was at great risk, we would have done whatever was needed. But was it really necessary? The person who handled billing said that they had run her insurance through their system, but because she was out-of-network, they couldn’t see what the insurance would cover. “They’ll pick and choose,” was all she could say. Not reassuring.

Around midnight, the CT scan results came back. Her neck was mostly clear, though there was some slight residual of the abscess. Her second IV drip needed to finish, and the ER team needed to assess options. As we waited, I noticed that her face was turning pinkish red. She was getting vancomycin, a powerful antibiotic which can cause a rash (a detail I’d learned years ago when I was constantly getting digital ulcer infections that required IVs), so I asked her nurse to check her. Sure enough, the IV pump rate was too fast, so she slowed it down with the doc’s input. Would anyone have noticed, I wondered, if I hadn’t been by her side?

By about 2:00 a.m., her ER doc came back to visit. They had contacted Tufts, but given that our daughter’s case was not deemed life threatening (thank goodness, but again, then why the extreme plan?), they would not admit her because of her out-of-state insurance. The ER doc had also consulted with the covering oral surgeon in Philly, who agreed that my original suggestion to drive her back later in the day made perfect sense. To her credit, the doc kept our daughter in her ER room for observation until shift change at 7:00 a.m. and sent Al and me back home to sleep.

I got about three hours after working off the adrenaline rush by doing some laundry and cleaning up the kitchen. Al picked her up on time from the hospital, and our daughter called Dr. B Sr to fill him in. He agreed that she was safe to travel and had no concerns about the plan. Since he’d already given her his cell number, he said we could contact him anytime on the way back to Philly, and he would check in that afternoon. Such a mensch. We felt very reassured, and after I rested a bit more, we set out around 2:00 p.m.

Now, of course, there is another layer of complication to this saga: When I tried to help stanch the flow of putrid pus from our daughter’s neck Wednesday night, I did not think to put on rubber gloves, and soiled the bandages on my thumbs. During the long wait at the ER, I went back home to change my bandages and start minocycline, which I always have on hand. If things got worse, I figured I could call my new ID specialist (my long-time specialist retired last year), whom I had fortunately met recently.

A few hours into the drive, my left thumb, which has a very persistent ulcer, began to buzz. Not a good sign. Just past the halfway point, as we got onto the Garden State Parkway in New Jersey, it was starting to smart. I could tell it was swelling, I was at risk for a lot of pain with a spreading infection, and it was now past 5:00 p.m. My daughter was feeling well enough to take the wheel, and I called my ID specialist’s office. Thank goodness, he was on call that evening. Over the next couple of hours, with the help of his excellent answering service, I was able to get through to him, get a prescription for a broader spectrum antibiotic, and figure out that it could be filled at the CVS near my daughter’s apartment, which would be open until 9:00 p.m. Our ETA was 8:15 p.m.

We made it. Because my Medex insurance is from Massachusetts, the prescription was not covered, but the wonderful pharmacist found a coupon to bring the out-of-pocket expense down from $75 to $22. Our daughter’s kind neighbors helped us lug all our stuff up to her apartment, and she found a good parking space. We slept soundly.

The next day, we met with Dr. B Sr and Dr. N. They reviewed all the notes and CD with part of the CT scan from the ER visit, talked at length with us, and determined that she needed a combination of antibiotics to fight back what was left of the infection. Her two jaw plates were in tact, with no sign of infection around all nine screws holding them in place (infections can dissolve bone, causing the screws to loosen, requiring more surgery). More follow-up was scheduled for Monday morning. And they knew all about the shortage of oral surgeons in our region, because there is a shortage of oral surgeons nationwide, though a concentration in the Delaware Valley, where one of the major training programs is based. She had both of their cell numbers and was encouraged to call anytime she needed help.

And so, on Sunday evening, she is doing better, thank God. The swelling has significantly receded. Dr. B Sr immediately responded to a few issues over the weekend. My plan, if all is clear after her Monday appointment, is to take the train from Philly back home on Tuesday.

But we are left with many questions: Why is our health care system so disjointed? Why should our daughter be rejected from a hospital because she lacks in-state insurance? Why is the obvious treatment plan initially rejected because physicians are more concerned about malpractice suits that what actually makes sense? Why isn’t there a better way to distribute medical specialties nationwide? Why should an antibiotic that would cost a few dollars in Massachusetts cost $75 across state lines?

Quality health care should be a right, not dependent on income or privilege or geographic location. None of this is new. But it really hit home for me this past week. I am exceedingly grateful for all the good care that our daughter has received. It just shouldn’t be this hard or confusing to get 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.

A Tale of Three Surgeons

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It’s Sunday afternoon as I write, and I am still in Philadelphia. This has not been a pleasure trip. My younger daughter needed emergency surgery last week, and, with her permission, here’s what happened (a long story):

A week ago Friday, my daughter had what was supposed to be a routine procedure at her oral surgeon’s office to extract two impacted wisdom teeth from her lower jaw. We texted in the morning beforehand, and despite a snafu with her planned ride, who had to cancel at the last minute, she was able to get to her appointment and find a substitute to take her home. “I hope that’s the only thing that goes wrong!” she texted. “Me, too!” I answered.

This was not to be. A few hours later I received a text: “Done just waiting for the anesthesia to fully wear off. My jaw is broken on the right so they need to see me on Tuesday or Wednesday but otherwise shouldn’t be too bad.”

To which I responded, “What???”

She couldn’t really tell me much more when I called her, and it was painful to talk because of the jaw fracture. So I called my own periodontist for advice, spoke to one of the nurses who knows me well from all my dental implants, and followed her suggestion to call the oral surgeon, Dr. N, in Philly, with my daughter’s permission, to find out what the hell had happened.

He took my call right away and explained that, indeed, her right jaw had fractured during the procedure and that her jaw would probably need to be wired shut for six to eight weeks. She had an appointment Tuesday with him, and he was working on getting her added to the OR schedule for Wednesday or Thursday at the nearby hospital. He attributed the issue to “soft bones.” Since she has Celiac, this is an actual possibility.

I called my daughter and broke the news, then told her I would fly down on Monday, Memorial Day, and stay with her for the week. She welcomed the idea, given the very upsetting prospect of jaw surgery and complicated nutritional issues for recuperation.

Fast forward to our Tuesday morning meeting with Dr. N. He had encouraged us to write down all our questions and we had a long list. He came into the exam room after a 45-minute wait and told her that she would need to have her jaw stabilized with a metal plate and then wired shut—possibly using elastic bands to keep her jaw closed, but maybe using actual wire to close it permanently during the recovery period. He insisted on giving us worst case scenarios for healing time. He demonstrated how she would have to learn to speak with just her lips because her jaw would not be able to move. He explained how she would be on a liquid diet the entire time.

Let us just say that it was not an upbeat conversation. Again, he said she had soft bones, but never explained beyond that why this happened, just focused on the surgery. He also informed us that he would be handing off the procedure to two of his practice members, Dr. B Sr and Dr. B Jr, who were highly experienced working on trauma jaw repair for children. Since my daughter is very petite and has a small face, this made eminent sense. And we were both just as glad that he would not be involved. He has sterling credentials and also is very experienced with facial trauma surgery, but the Drs B have even more experience.

She was scheduled for surgery the next day, but as an add-on to the OR list, so we were told to get to the hospital by 1:30 p.m. and her procedure was scheduled for 3:00 p.m or later. All this time, I should add, she was holding up remarkably well, given the situation, but in a lot of discomfort because of her jaw fracture and could not eat much.

Once she was prepped in pre-op, I was allowed to sit with her until the procedure started. We waited a long time. Finally, Dr. B Sr came to explain the surgery. And here is the difference between Dr. N and Dr. B Sr. He actually explained, in very understandable terms, with a photocopy of her jaw X-ray, what had happened and why.

My daughter has, like me, large teeth for a small jaw. Her impacted wisdom teeth were large and lodged sideways, so removing them left a big hole in her gums on either side. There’s not much left, now, above her slender jaw bone where the teeth had resided. The right extraction caused the jaw to fracture and move upwards, pinching a nerve.

But the key point here is that she would have been at risk of even more complicated fractures had she not had the extractions done, because she has what is called a ‘glass jaw.’ Some boxers have this issue: if they have impacted wisdom teeth and relatively small jawbones, when hit, their jaws fracture. My daughter was always at risk of a fracture with the wisdom teeth removal, though no one ever told her that. If she had waited any longer for the extraction, her risk would have gone up. It was basically a no-win situation. Dr B. Sr explained that this is an issue for petite people like her. (And it was not a case of soft bones, because she had a bone density scan within the past year and was fine.)

We both were very relieved after we spoke with him. Finally, it all made sense. Dr. N had not screwed up. It was not a fluke. It was just a real risk that, unfortunately, played out. And Dr. B. Sr knew what he was talking about as chief of Maxillofacial surgery at one of the children’s hospitals in Philly. His son is also an expert in the field and on staff at the same hospital.

She was finally wheeled into the OR around 5:00 p.m. Three hours later, the Drs. B came out to meet with me in the waiting area. All went as well as possible. Although the OR team had initially said they had none of the elastic bands we had hoped would be used during the procedure and she’d have to be hard-wired shut, the Drs. B had figured out an alternative, McGyvering a piece of catheter tubing to do the trick. They had to make an incision externally to put in the jaw plate, because her mouth is too small to do it from the inside, but otherwise she was in good shape with an excellent prognosis.

A while later I got to see her in recovery. True to form, even as she was still woozy, she was already in charge, instructing me whom to contact (boss, family, best friends) to give an update, and able to speak understandably, even with her jaw shut tight. As they wheeled her up to her hospital room for overnight observation, I said good night and headed back to her apartment, a half-hour drive away. I was able to find my way and even park in a tight street spot, like a true Philly resident.

Thursday, she came home from the hospital and we began to experiment with making smoothies with all kinds of ingredients, so she could finally eat. On Friday, I drove her to see Dr. B Jr. for a follow-up. Like his father, he was calm, clear, a great listener, and willing to go the extra mile to help her. He swapped out the substitute elastic for the real thing and also told her how to remove and replace the elastics, so that she can take her other medications. He expected to be able to switch her to more stretchable elastics in a few weeks, and he was hopeful that she’d be out of the elastics at four weeks. The metal hardware in her gums that hold the elastics would come out a couple of weeks after that.

As of Sunday, the swelling in her face is nearly gone, she is able to take all her meds in pill form, and she’s been enjoying my creative smoothies. Her favorite is chocolate oat “ice cream” with oat milk and protein powder for an afternoon snack. She can smile and talk without a problem, though it’s tiring after a while. We’ve taken some walks and gone to an art museum. We see Dr. B Jr. again on Monday, and then we’ll drive back to Massachusetts on Tuesday so that she can recuperate with us for a couple of weeks.

This is a long way of saying that so much of going through an experience like this depends on good communications with medical professionals. While neither of us fault Dr. N for the mishap, his personal style was far too blunt and focused on fixing things, not on my daughter as a person in a vulnerable situation who was in pain and scared. The Drs. B had a totally different approach, setting a calm tone, educating, encouraging, and giving us confidence that this would work out. And, thank God, it did.

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.

Up in the Air

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I’m traveling again on my own, sitting at Logan airport, waiting to board my flight to Philadelphia. So far, so good, but as much as I try to anticipate how to make the journey easier on my hands, there are always surprises.

One thing I did right: I knew the flight was full, and my seat is in the back. Chances of getting overhead storage for my carry-on was slim. So I volunteered to check my bag when the inevitable announcement came. Saved $30 and spared my hands and back. There’s an Apple Air Tag in my bag, in case it gets lost in transit.

One thing I should have realized in advance: Getting though the entrance to security requires showing your ID, which I had ready, but my driver’s license is in a wallet with a window. Nope, needs to be handed to the security staff, because they run it through a card reader. I fumbled and fumbled to remove it. Fortunately, no impatient person was in the very short line behind me. But I needed the TSA guy to take it out for me, just couldn’t do it myself. Ugh.

Something I wish I could manage better: Lifting my luggage into the TSA bins, taking out my computer, taking off shoes, et al is always the hardest part of air travel for me. (“Do you happen to be 75 or older?” asked the TSA guy politely, regarding the shoes. Apparently when you reach that magic age, you are no longer suspect for having dangerous items concealed in your footware. “No,” I asserted. He apologized for asking. Ugh.) At least security wasn’t crowded, so I didn’t feel as rushed as usual.

Another thing I did right, sort of: With a lot of time to kill, I got a bagel and cream cheese and some tea at a Starbucks in the terminal. Of course, this meant that I had to spread the cream cheese myself. It came in a foil packet with a nick at one end and directions to “tear here.” Unless you have strong fingertips, these things never work. I had packed a pair of manicure scissors for just such a challenge. But I put them in my backpack, instead of my purse. So, lots of digging around before I could pull them out and use them. Next time, I need to remember that I can put them in my purse—no issue with tiny scissors going through the TSA scan (especially since it raised no issue when my backpack passed inspection—duh).

A useful trick that I learned from my trip to Germany: To protect my thumbs, which are always bandaged because of ulcers that never heal, I wrap the bandages with a second layer using Coban. This is an elastic fabric that comes in rolls and sticks to itself. One of my medical team recommended it as a way to cushion my thumbs and protect them more. It works pretty well, and serves also as a second layer to keep my bandages from getting dirty from travel.

A necessary precaution: I’m wearing a mask in the airport and on the flight. Enough coughs and sneezes in the vicinity, and I don’t want to get sick or make others sick when I arrive.

I wish flying were simpler and enjoyable. It isn’t.

Even still, I am always amazed that a huge steel tube with wings, filled with tons of people and luggage, can rise into the air and carry us to distant places. The view of clouds and patchwork landscape and cities from above never fails to fascinate. For all the drawbacks of air travel in the 21st century, it’s still a wonder. . . .

And I made it to Philly without a hitch.

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.

Turnover

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Last Friday I met my new infectious disease specialist, Dr. A. He’s very knowledgeable and experienced, chief of ID at one of our city’s major hospitals. I’m relieved to have found him as my partner for managing all-too-frequent infections in my digital ulcers, since my former ID specialist, Dr. W, retired about six months ago.

Dr. W and I had an understanding for decades that I would keep a supply of antibiotics on hand, and whenever I felt the tell-tale pain and saw the swelling and redness of an infection, I would start the meds and let him know how I was doing. Finding another experienced specialist who would agree to the same arrangement was not guaranteed, and when Dr. W retired, there was no hand-off to a colleague. So, with some help from my PCP and a number of phone calls, I was able to get a consult with Dr. A. We clicked right away, and I’m very grateful to have him as my new partner in managing this disease.

Transitioning to new physicians has become a theme of the past few years. There’s no guarantee of finding the right match. So far, I’ve been lucky.

First, my long-time rheumatologist here at home retired. He was the one who saw me back in 1985 when my symptoms emerged and was my anchor for many years. He arranged upon his retirement for me to be seen by the rheumatology department chief for our health care provider. Then came my long-time rheumatologist at Boston Medical, a gem, who also arranged for a transition to his successor before he retired. While my relationships with my new rheumatologists are still a work in progress, they are both top notch and personable, which is an essential combination. And the major advantage of the switch has been a fresh review of my medical history and some necessary diagnostics.

Next to retire was our primary care physician, who had been my doc for all the years I’ve lived here, and was Al’s, too, since we’ve been married. This time, there was no transition plan in place. In fact it was downright chaotic for a few months, until we were able to get an NP through our provider’s excellent geriatric care department. She is wonderful, and best of all, the whole practice is based on house calls. Such a pleasure to see her, together, at home, several times a year.

Recently I also had to find a new ENT plastic surgeon, because the calcium deposits that lodge on the bridge of my nose have grown back to the point of needing removal. Last time I had this procedure was five years ago, but I’ve waited until the pandemic passed to take care of it. My prior specialist moved on from Boston Medical at some point during the pandemic, and so I met my new specialist a few weeks ago. He is also head of the department, so I’m good hands with him and his team, especially since the procedure looks to be a bit more complicated this time around. He almost tried to talk me out of it, given how the skin on my nose is not that flexible, but we reached a meeting of the minds and a solution involving a skin graft. So that’s next month.

This kind of turnover is inevitable when you’ve had a chronic disease as long as I have, for more than four decades. Many of my docs were close to my age or just a few years older when we originally met. We’re all getting older. Many of my new specialists are younger than I am, though not all.

But the pandemic has definitely made transitioning from one physician to the next more difficult. Many physicians have burned out from the stress and strain on our medical system. Others seek better pay and a more manageable work-life balance than they can find here in the Northeast, where I’m told that medical salaries lag behind other regions in the country. In the Boston area, GI specialists, in particular, are apparently in short supply.

Right now, I think I’ve rebuilt my team so all bases are covered. It will take more time to build the trusting relationships I had with their predecessors. Here’s hoping they don’t move on for at least the next five years.

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: Gratisography