Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

6 Down, 24 to Go

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I finished my sixth hyperbaric oxygen (HBO) dive on Monday. Already, it’s becoming routine. But getting to that point took all of last week. Here are some lessons learned, so far:

  • It’s really important to have some meaningful entertainment when you are confined to your back, lying inside a glass-and-steel chamber for 2 hours and 20 minutes. I decided to immerse in the best fiction writing I could find at the library. Toni Morrison’s A Mercy, narrated by the author, proved to be the perfect choice. Her language is magnificent, and her artistry is both an inspiration and a thought-provoking guide to revising the first draft of my novel (finished in late winter, incubating since then due to all the hand mishegas).
  • Definitely go with a light breakfast for an early morning dive. I do not want to have to take a bathroom break in the midst of the dive—that would either truncate the day’s session or require a second dive/reverse of pressure. Too anxiety-provoking.
  • Meditation breathing really helps to counter claustrophobia. During my third dive last week, I suddenly began to feel trapped in the chamber. Focusing on my breath enabled me to calm myself and focus on the audio novel.
  • Bring a granola bar or other healthy snack for after the dive. I have yet to do this, but I realize it would be a good idea. I’m very hungry when finished, and I still have to spend nearly two hours redoing all my dressings. The dive increases your metabolism rate.
  • Ear tubes—which I had inserted on Friday—definitely ease the pressure on eustachian tubes during the dive (in the first 15 minutes or so, pressure in the chamber increases to 2 atmospheres, the equivalent of being 35 feet below sea level). However, the tubes have also caused some additional muffling of my hearing, to my dismay. My right ear cleared a bit over the weekend, so I no longer sound to myself as if I’m talking under water. But my left has yet to clear, and I can hear my pulse in my left ear.
  • Sometimes I am very energized when I come home, and other days, I need a nap. No clear rhyme or reason. But I have been able to put in a productive afternoon of work every day, so far.
  • The therapy works.
    • Exhibit A: I have had an intractable ulcer on my left inside ankle for almost a year, which had mostly healed over the summer, but was persistently flaking and threatening to reopen. After two days of HBO, the skin was completely healed. Miraculous.
    • Exhibit B: The donor site for my skin grafts on my right thigh shrank by about 50 percent last week. I was finally able to flake off the very dry scab Sunday, which had become quite itchy.
    • Exhibit C: My finger pain has decreased even more than it had from just the grafts. I am now able to drive again. The vibrations of the steering wheel no longer hurt my fingers. I put this to the test on Sunday and was able to drive us to a wedding over an hour away, and back. First long-distance highway drive since July.
    • Exhibit D: My health care team unanimously thinks my grafts are healing well. I spiked an infection in my right middle finger, so am back on antibiotics. But it appears to be healing again, thank goodness.

Tuesday morning is Dive Number 7. I plan to vote in our local elections on my way home. I’m grateful that I feel up to it. Whatever your health circumstances, I hope you do, too.

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.

Image Credit: The HBO chamber I’m using looks a lot like this image from Long Beach Medical Center in Long Beach, California.

Deep Dive

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I began hyperbaric oxygen therapy this week. I was nervous on Monday, but for anyone considering this treatment, I can now, based on my first adventure, assure you that it’s not as scary as it sounds.

One of my biggest worries has been figuring out how to do my finger dressings using materials that are acceptable inside the HBO chamber. Based on a meeting last week with Wound Center staff, as well as the fact that I had decided to take advantage of the earliest morning option, I realized that I needed to come up with a solution that I could do the night before. Switching my dressings takes at least an hour on the days when I don’t need to change the bandages for my grafts; on the alternate days when I deal with the grafts, it can take as long as two hours.

Unfortunately, the ointments that I have been using, as well as the bandages, are off-limits for this treatment. You have to use 100 percent cotton products and no creams, ointments or gels. The gauze that my surgeon had given me for the grafts includes a petroleum ointment, so that’s a nonstarter. I’ve also observed that this dressing is creating too dense a moisture barrier on the skin surrounding the grafts, causing some of it to turn white. Not good.

Fortunately, the Wound Center staff gave me a couple of good alternatives: a silicon gauze film that is tacky but does not adhere to the grafts — a big bonus for managing the sutures. They also gave me rolls of cotton gauze to try. Sunday night was a two hour production, but I finally figured out how to provide good coverage, with some help from Al.

Unfortunately, I did not sleep well. I was uneasy, my gut was reacting to a very rich dessert that I shouldn’t have eaten, and rain was pouring outside. Finally eked out three hours, but I was not in great shape when I woke up. Thanks to Al, I got to my appointment on time at 7:00 a.m.

Understand that I am not a morning person. But going any later in the day would mean I’d have no time to get any work done in the afternoon. (The entire dive lasts about 2 hours and 20 minutes.) The hospital was quiet, and the Wound Center was not yet bustling with activity. Indeed, other than the latest headlines on one of the overhead video screens, it was actually quite peaceful. Ruthie, my tech, got the other three experienced patients ready and into their chambers, so that she could spend more time with me doing intake.

First, I had to change into hospital pants and a Johnny top. She gave me the “smallest” size they have — which would have fit at least two of me, if not three. Fortunately the pants had a good drawstring. Next, I got settled on the stretcher that fits into the cylindrical HBO chamber. It rides on a track; the stretcher is positioned at one end of the open chamber at the outset. Your head is slightly raised, and you can request a sheet and up to three blankets to stay warm. I decided on two blankets to start.

After taking my vital signs and reviewing the long checklist of prohibited materials (no, you cannot take your smart phone with you), Ruthie attached a small metal square to the inside of my wrist with a strap that covered it — this was a grounding device to avoid static electricity. Remember, they fill the chamber with 100 percent oxygen.

Following one last trip to the bathroom (ugh), I was ready to take my “dive.” They use this metaphor because once you’re sealed inside the chamber (glass top so you can see out and around), pressure increases as if you’re doing a deep ocean dive. This was the hardest part for me. Both my eustachian tubes are partially blocked, chronically so, and the increasing pressure was at times painful. Ruthie kept talking to me via a telephone receiver, guiding me through the process and explaining how to pinch my nostrils and blow through my nasal passages in order to ease the pain. I had an odd side effect (naturally): as the pressure increased on my ears, it made me dizzy to speak.

Finally, after maybe 20 minutes, I got through the pressure change and reached equilibrium. At this point, I was receiving 100 percent oxygen. It is very easy to breathe 100 percent oxygen. Ruthie turned on the DVD player with my CD book, a collection of linked short stories by Alice Munro. I was pretty drowsy, and the first disc was not as engaging as I’d hoped, so I dozed a bit. By the second disc, the storyline had picked up, and I was feeling more at ease, not minding the occasional vibrations of the chamber or sense of confinement.

Al stopped by a couple of times — before he started work for the day (he’s a social worker at the hospital) — and a couple of hours into the dive (he greeted me on the phone receiver with “Hello, Cookie Dough!). To my surprise, it was soon time to reverse the pressure, which took about another 15 to 20 minutes. This time, my ears didn’t hurt, although they bubbled and crackled, which is apparently quite normal.

I was relieved when Ruthie pulled my stretcher out of the chamber. “I survived!” I exclaimed. “You did!” she answered. All three of the other patients had come and gone, there were new patients in the midst of their dives, and the place was hopping. I got changed and then spent another hour in a private changing space that wasn’t in use, redoing all of my bandages with my normal silver alginate dressing, creams as appropriate and bandages. My fingers looked nice and pink. They paged Al for me, and he took a break from work to drive me home and set me up for lunch, because I was pretty tired by this point.

An hour’s nap helped, and then I found my way back to my computer to do some writing and editing. I get to do it all over again the rest of the workweek, for the next six weeks — but, I sincerely hope, with much improved sleep. Onward.

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.

Image Credit: David Talley

So Far, So Good

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A week has passed since my second hand surgery, and I’m pleased to report that I am bouncing back more quickly than I expected. Skin grafts are healing well, and my appeal was approved for hyperbaric oxygen therapy.

It’s been quite the ride. For the first few days, my hands were protected by huge padded splints that went halfway down my forearms. My pain level was quite manageable, thank goodness, but I could not do a thing for myself.

You really don’t realize how much you depend on your hands until you can’t use them at all. I felt like a baby. Al did yeoman duty, feeding me, wiping me and washing me, all with patience and good humor. He is a good man. We were both blessed and energized by caring friends who brought delicious home-cooked meals all week, and by many prayers for healing and kind wishes.

Everything changed on Thursday, when Dr. S removed the splints. He checked the graft on my left middle finger (he deemed it good) and the flap of skin that is now sealing my right middle finger (also deemed good). The other two grafts he left alone for inspection on Monday. But I had my hands back.

As soon as I came home from my appointment on Thursday, I was able to sit at my computer and get some work done. Even as I was tired, it was a tremendous relief to be able to use my hands again, with care, and regain some independence. I’m not ready to drive, yet, but I hope to as soon as I feel confident that my grafts have stabilized.

When Dr. S checked the grafts on Monday, he was more than pleased. The skin was nice and pink, a major accomplishment, given my poor circulation. I’ve been keeping my hands warm using heat packs on my wrists. Since I can’t put on my wrist warmers right now (bulky bandages), I have been wrapping the heat pacs into ace bandages around each wrist. Works just fine.

I still have two pins in my left index and right pinky. These will come out soon. Monday afternoon, I had smaller splints made to stabilize the three grafted fingers as they heal. I’m still figuring out how best to care for the “donor site” on my right thigh, a two-by-four-inch rectangle where a thin layer of skin was removed for the grafts, but it appears to be healing slowly.

Also on Monday, I got the green light on my hyperbaric oxygen therapy appeal. This was especially surprising, because our health insurance had called the end of last week, claiming that we had never applied for prior authorization, so no appeal was appropriate. I referred them to our hospital wound center contact who had, indeed, filed the request that had, indeed, been declined. I also explained that the HBO would probably save them money because it would spare me more surgeries, if it works. That argument may have done the trick, because they never even bothered with a peer-to-peer review. In any case, I start next week.

It’s a lot to absorb. I’m extremely grateful that my wounds, now covered with my own skin, are less painful, and that the risk of having skin grafts has been, so far, worth taking. One step at a time. . . .

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.

Next Steps

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It’s been muggy and drizzly and rainy as Nate sweeps through New England this Columbus Day. Not much left to the storm, fortunately for us. And good weather lies ahead for the next few days. I spent the afternoon getting as much work done as I could, because I’m facing more hand surgery a week from today.

I wasn’t expecting this to happen so soon. Indeed, I have been savoring regained abilities. My big accomplishment last week was running an errand after a doctor’s appointment, something I haven’t been able to do since before my first surgery at the end of August. I even went for a massage, a most welcomed treat.

But my hand surgeon, Dr. S, told me we need to move ahead with the skin grafts on four of my fingers, the ones with the largest open wounds post-debridement, because there is a limit on how long the two stabilizing pins in my right pinky and left index finger can remain. My Boston Medical Center rheumatologist agrees that the grafts are worth trying. Dr. S says he will know if the grafts take when he looks at my fingers three days after the surgery. If the grafts don’t work, he wants to give the skin more time to heal on its own before going to amputations. That is, of course, the last resort.

So I went ahead and sent in the insurance appeal for the hyperbaric oxygen treatment last Friday. Asking for a peer-to-peer review. We shall see.

I also decided not to go with Botox shots in my hands, despite Dr. S’s recommendation. The research just doesn’t give me enough confidence in the procedure. In particular, I found a study published this summer in Arthritis & Rheumatology—randomized, double-blind, placebo-controlled, funded in part by the Scleroderma Research Foundation—of scleroderma patients who had undergone Botox injections in one hand and saline in the other as a control. One month out from the treatment, the researchers found a statistically significant decrease in blood circulation in the Botox-injected hands—the exact opposite of the intended outcome. In addition, other research I found indicated that about a third of Raynaud’s patients who undergo Botox injections in their hands experience paralysis that lasts from two to four months. No thank you.

Instead, I’m going to boost my hand circulation with a low tech solution: hand warmer packets inserted into my wrist warmers.

I don’t relish going under the knife again. But it’s also better to just get it out of the way while the weather is still relatively warm. I’ve switched my daily guided meditation (highly recommend Headspace) from pain management to stress management. I’m looking forward to a movie date with Mindi the day before surgery.

I will be taking a break from blogging next week, given timing of the surgery, and will report in when I’m up for sitting at the computer again. Until then, I wish all of us peace and healing.

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.

Image Credit: Isaac Benhesed

Thoughts and Prayers

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I woke up Monday morning to read the tragic, depressing news about the mass shooting in Las Vegas on Sunday night. And to read the inevitable comments on social media, news analyses, and verbal throwing of hands in the air, how will we ever stop this scourge? Lots of tweets and Facebook posts about sending thoughts and prayers to those affected by the tragedy, as well as criticisms of “thoughts and prayers” as being enough already. Time for action to end what has become a major public health crisis in this country.

I felt myself sinking into the morass. There must be a way for us to come together as a country and solve this. I wish I had the answer. I don’t. But I want to put in a word for the value of thoughts and prayers.

Thoughts and prayers are not a passive pursuit. Indeed, thinking — as in imagining what it is like to have been the victim of a tragedy — is one of the most important first steps any of us can take to get past the divisive rhetoric surrounding this issue and move toward finding common ground. Empathy is an essential virtue.

Prayer is a meditative way to direct those thoughts toward healing, dialogue, problem-solving. It is a means to focus energy toward the greater good. It is also a means to short-circuit knee-jerk reactions, accusations, epithets —  everything that distracts from the hard work of reaching consensus.

I have been the beneficiary of many thoughts and prayers from family and friends over these past few months as I have been wrestling with my hand issues. I genuinely believe that all that positive energy has helped me to find strength. Many caring messages have brightened my days.

So I don’t believe that thoughts and prayers are waste of time, on either a personal or communal level. Thoughts and prayers alone, however, are not enough. Not to solve a problem as big as the one our nation is facing.

Here is a link to one of the best articles I have seen that explains why our country is so mired in the debate over guns, even as we actually agree on more than headlines and raging pundits would allow. I hope it gives you some clarity as you wrestle with this issue in your own way:

 Gun Violence in America, Explained in 17 Maps and Charts, Vox 10-2-17

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.

Image Credit: David Monje