Home from the Hills

I’m home from the Brigham after six days in the hospital for lung-transplant evaluation. I survived all the tests they could throw at me, ranging from neuropsych to colonoscopy to arterial catheterization… to trying to sleep in a hospital room with lights going on and off all the time, and beep! beep! beep!  As far as I can tell, I passed all the tests, with the exception of getting a decent night’s sleep. That one I failed. The only test outstanding is an esophageal swallowing test, which they had trouble scheduling. I scheduled it myself after I got home. Also, I need to meet with a surgeon. When those are done, The Committee will meet to decide my fate—i.e., whether I get listed for a lung transplant, and what ranking.

There was a contingent of docs that wanted me to stay in the hospital through it all, right up through actually getting a lung (or two). Their reasoning was that I could suddenly go downhill at any time (an exacerbation, they call it), and become acute. While acknowledging that risk, I declined to stay, on the grounds that sitting in a hospital doing nothing is a terrible way to stay healthy, and that I would be safer, healthier, and in a better mental state at home where I can exercise, do my work, and live life. And not wear out my support team before anything has even happened.

I am hopeful about getting listed and about having the operation. It’s a daunting prospect, most daunting of all (in my mind) a lifetime of immunosuppression to avoid rejection. I like my healthy immune system. But those are the breaks. I like even better the thought of breathing freely, and no more oxygen machines. I credit folks on various support groups who have enthusiastically embraced their lung-transplant experiences for turning me around on this. Thanks, guys.

I’m ready. Bring it on.

What look? It’s the only one I’ve got.

 

Next Up—Lung Transplant?

Maybe. Here I sit at Brigham Hospital, waiting for an “expedited evaluation” for a lung transplant operation. This is based upon a meeting with the medical director of the lung transplant program, who suggested that the time is right for me now, before I get any worse and while I’m strong enough to get through it in good shape. (If you’re just joining us, I have pulmonary fibrosis, a kind of scarring of the lungs, and my choices are to undergo a slow decline until it kills me, or risk a lung transplant—if I qualify.)

I checked in twenty-four hours ago for a battery of tests, but unfortunately, not much has happened yet. I am sitting here, bored, typing on my tablet. Got tired of watching TV on my tablet. I should be reviewing the new recording of Panglor on my phone, but I couldn’t concentrate.

Tomorrow. Tomorrow it’s going to start happening. That’s what they tell me. I hope they’re right.

 

The Ponce Chronicles 2025, Part Five

As the full moon rises in the early evening sky over Ponce, we are wrapping things up in preparation for returning to Boston. And by “wrapping up,” I mean trying to get all the things done that we haven’t gotten done in the last two months. In fact, we’ve gotten a whole lot of repair and maintenance work done, and also hosted several sets of friends from various locations. I’m sorry I haven’t posted as much as I would have liked. Sadly, my writing surge was short lived. And now we’re packing a ridiculous amount of stuff to carry back with us—including an extra dog.

It proves to be incredibly complicated, not to mention expensive, to fly a dog home from Puerto Rico, when that dog is too large to travel in the cabin under the seat of a regular airline. Shadowfox is traveling on a cargo plane by herself. A facilitator is seeing to the arrangements for us, which involve SF arriving not in Boston but in Newark, New Jersey. What this means is that I’m flying back first on my own—laden with oxygen paraphernalia as well as the usual huge checked bag. It’s not a pretty sight. Although it may be a comical one.

I’ll be arriving home just in time for some long-scheduled medical tests. And then I load up the campervan and head off to Newark! I must pick up the Fox at 9 a.m. at a cargo facility at Newark Airport, and not be late. (Not my strong suit.) Then the poor critter, hopefully not too traumatized, will head home with me—to her new home! She has calmed down considerably. If we survive the first year of puppy energy, she’s going to be a great companion. (McDuff already is.)

The next day, Allysen and McDuff fly home. I hope, when McDuff arrives to find Shadowfox already there, she doesn’t run away to join the foreign legion.

Here’s a final picture. I couldn’t get McDuff to stick around for the shutter.

The Ponce Chronicles 2025, Part Four

The days and weeks are marching by, here in Puerto Rico, temporarily distracted from the insanity afflicting the country. Some friends from Boston were just here, had a great time, and have left. Other friends are coming from Seattle tomorrow. Workers are here most days, repairing brick damage from Hurricane Maria and the earthquakes a few years ago. I’ve done a lot of small repairs. I have been working on the book—pretty steadily, getting a page or two written most days, which for me at this point is great.

It now appears that we will be returning home in a few weeks with a new dog. Shadow Fox got spayed a few days ago and is now wearing a hat of healing. She has quickly learned some of the basic commands, and is mostly house trained. But high energy. And we are tasked with keeping her quiet for two weeks, post-op. Challenging! We know from experience with border collies that smart dogs need something to do, and we’re doing our best. McDuff is not altogether thrilled with this noisy interloper, and it’s hard to blame her. We’re hopeful that things will settle out between them soon.

Here’s a view of Ponce from the neighbors’ house, the Caribbean visible at the horizon.

And here’s Ponce, with dog, from our deck.

The Ponce Chronicles 2025, Part Three

Or should I call this the Puppy Chronicles? Little Shadowfox turns out to be a fast learner, and she’s already calmed down considerably and is well on the way to being house trained. She sits and stays (ish). She’s sleeping through the nights, and is getting used to her bungalow (crate). She’s becoming part of the family, and it looks more and more as though we’re going to be returning in April with a second dog. (The name Shadowfox is not official yet, but it seems to be sticking.)

One big project got done by a contractor—a new platform for the pump and pool filter—plus a bunch of small repairs by yours truly. A lot of other important projects are still on hold while we await workers. Until a few days ago, our daughter and her partner were here, enjoying the Ponce celebration of Carnival. They’ve gone back home, and now it’s the two of us and the dogs, until some friends arrive in another week or so.

I’ve begun writing again. Slowly and haltingly, but writing. In fact, in the last week, I’ve dreamt twice about writing (though not fiction). The dreams were so detailed that they involved the actual wording and editing of the text my dreaming self was working on. I’ve never experienced that before. I think my subconscious is beginning to stir.

Here’s a clip of Shadowfox in perpetual motion machine-mode, helping Allysen to water the plants. (If it asks you to sign in, just reload and click Watch on Youtube.)

And the two dogs learning to get out of the swimming pool.

 

 

The Ponce Chronicles 2025, Part Two

If there’s one certainty about our coming to Puerto Rico—beyond the island’s beauty and warmth—it’s that our plans will be thrown into utter disarray by the arrival of one or more abandoned dogs seeking refuge at our front gate. This time it happened on the day of my second arrival. This charming little girl showed up, half starved, inside the gate, on the very day Allysen drove to San Juan to pick me up. You’d have to be Scrooge to resist this face.

I suppose we could have said, “Go somewhere else to die…” But seriously, no. By the time I got there, she’d been given food and water. Then she got a collar and a flea bath and a trip to the vet. She is sweet and affectionate and unafraid of people, and while our dog McDuff finds her energy mildly alarming, they get along fine. Did I mention she has boundless, explosive energy and no training? She could be in Wikipedia under the heading, “Handful.” Everyone is in love, and also exhausted.

Can we find someone to adopt her before we leave in April? Is there a way to get her back to the states, given that she’s too big to travel under an airline seat? Can my wife bear to give her up? Many questions, no answers. She appears to be part Manchester terrier, and guess who has always wanted a Manchester terrier. (Yesterday was Allysen’s birthday, so this might just be her present.) We’ve tried a dozen names on her and settled on none. I presently call her Shadowfox or Foxbat. But that might turn out to be her breed and not her given name.

When all these things are settled, I’ll let you know. Here she is with McDuff.

Boskone Over, Back to Puerto Rico

Last Saturday, I made my first in-person appearance since the pandemic at Boston’s Boskone convention. It was brief but enjoyable. I moderated a panel on “Hopeful Futures in SF,” which is something I feel we need more of; and I moderated a panel on “Writing and Structuring Long Series,” which is something about which I feel more writers should finish what they start. Ahem. Both panels were lively, with good input from my fellow panelists. I also talked to a fellow writer who told me he’d made extensive use of my online writing guide when teaching writing to high school students. This totally made my day.

Tomorrow I’m off once more to Puerto Rico, because we need to get going again on The Ponce Chronicles, or something like that. Also, I miss my wife and my dog. One of my daughters is already there, and the other one just landed in Ecuador. Doesn’t anyone stay home anymore? I guess not. I’ll be back in touch when there’s something to report in the next episode of the hit webcast, The Ponce Chronicles. (Cue rousing theme by John Williams.)

See you then!

IPF Update

Here’s another of my promised updates on my battle with pulmonary fibrosis. Now back in Boston (see below), I just had my first CT scan in a couple of years, and the new images show that my interstitial lung disease has progressed more or less the way my pulmonologists expected. This is a lot like, Sorry to report, but we’re continuing to spiral in toward the black hole. Still, according to my pulmo, she’s seen worse. My need for supplemental oxygen has doubled in the same time frame, which is not great news, either. I have a “new” 10L oxygen concentrator here at home now, as well as the actually new one I got in Puerto Rico. This thing is loud! It might be saving my life for now, but it’s killing my hearing and threatening my daughter with migraines at the same time. Looks a little like Robbie the Robot.

The new drug that promises to stop the progression of this damnable disease has just completed dual trials, with favorable results (according to my doc, who keeps her ear to the rails). There’s hope that it could be approved for use before too long. But that’s only if the Musk/Trump wrecking ball currently demolishing our government doesn’t disrupt the FDA’s drug approval process. (Bets, anyone?) That aside, in April, when I come back from Puerto Rico for the second time, I’ll be looking to get listed as a lung transplant candidate.

That’s all kind of a downer, isn’t it? Let’s see if I can end this on a more positive note: I have a whole lot of people praying for me. And I can still do all the push-ups and squats and lunges and weight-lifts I was doing before. I just need a little extra push in the atmo department. And ear muffs. What’s that? (Cupping hand to ear.) No, I can hear you just fine! It’s just… can you stop mumbling and speak up a little?

Upon arriving home from the tropics, this was the scene that greeted me. Brrrr.

Boston Lights at the Franklin Park Zoo

posted in: art, events, personal news 0

Recently we went with a friend of Allysen’s to see this remarkable installation of art at Boston’s Franklin Park Zoo. It was spectacular, an hour-long walk through the grounds of the zoo, winding past a continuing display of gorgeously lit fabric-covered, wire-frame sculptures, many of them animated. It was mesmerizing, and a remarkable achievement by the artists who created it. Here are a few of the highlights:

We didn’t see any orgs, that is, living zoo animals. I asked about it as we were leaving, because I thought maybe they had all been moved to another facility for the time being. But no, I was told, they were all just asleep in their enclosures—apparently uninterested in the fairyland just outside their doors!

Pulmonary Fibrosis Update

I said I’d post from time to time on how I’m doing, health-wise. I guess it’s about that time. I just had my semi-annual visit with my pulmonologist, complete with the usual PFT (pulmonary function tests), to see how well my lungs are breathing. The answer is, almost as well as this time last year. I am reasonably stable, which with pulmonary fibrosis is the best outcome you can expect with the treatments now available.

I’d be lying if I said I wasn’t a little disappointed. The Chinese herbal treatment I’m on is reported to have helped several other PF patients get measurably better, and of course that’s what I wanted, as well. But I don’t know the details of the other patients.

My doc was pleased that I’m doing as well as I am. We discussed the Chinese herbs, and when I said the main definite benefit seems to be improved energy, she assessed that as a win and suggested I keep taking them. We talked about some new drugs coming along in clinical trials; there’s one she’s excited about, which offers the hope—no, not of a cure—but of real stability and the halt of decline. I said how soon, and she said it was being fast-tracked with two simultaneous trials, and if the tests prove out, it could be available in a year or two. Now I’m excited about it.

Now, if only they had something to keep me and my family from tripping over the damn oxygen hose all the time! What we exos have to put up with, carrying our own atmospheres around with us!

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