Tag Archives: lung transplant

MARCH 4 — Floating in a Tin Can

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March 4, 2014   Boston

I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.

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The tiny med-jet.

The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”

They stuffed me into a pop-up seat behind the pilot and we took off.

It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.

I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.

Two years, March to March:

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So many days. Each day thinking, Maybe today. Have to be ready.

Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.

Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.

The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”

Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”

I laughed and said of course not.  She didn’t really like the exhibit — not her style. But it was something to do.

The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.

Shall we do it? Of course.

“This is one that goes through my mind a lot,” she said, writing.

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(Samuel Beckett.)

UPDATE:

Interesting coincidence we discovered after I published this post:

So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.

When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.

 

—Maryanne

 

 

JULY 16–Kitten Visits Cats

Visiting Mittens

Visiting Mittens

After her transplant, Caitlin will not be able to be around cats anymore. Which is sad because she loves cats so much! Today we drove far out into the country to a wonderful, no-kill humane society where we spent an hour and a half playing with the cats. Mittens, shown here, was the most painful kitty.  Abandoned by its owner. HOW anyone does that is beyond me. She was so confused by her cage that we let her out 3 times to play with her. So painful to have to leave her there!!  But a wonderful place, doing great work.

–Maryanne

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JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad

In 2013: Looking Good. Feeling Bad

In this column for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.

It terrified me, too.

But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.

Read the entirety of her thoughts here: The Unthinkable Transplant

rainbow

-Maryanne

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APRIL 24–“The timeless, repetitive waiting.”

michener(1)Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.

I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.

We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.

–Maryanne

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APRIL 1–Lots of “Months”

Photo: Justin Posey

Photo: Justin Posey

My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.

I’ve been a registered donor since age 16–here’s a link to your state’s registry if you’d like to register, too.  http://www.organdonor.gov/becomingdonor/stateregistries.html

–Maryanne

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MARCH 15–Winter to Spring

By Stephanie Danforth

Art by Stephanie Danforth

Today marks three months here, but this beautiful painting, which our wonderful friend, Stephanie Danforth, recently painted and sent to Caitlin, reminds us that spring is imminent, and that every day spent waiting means one fewer day to wait.

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–Maryanne

FEBRUARY 24–The Long Winter

At the Heinz History Center

At the Heinz History Center

“Any news yet?”  No, we are still playing the waiting game. Caitlin’s been on the list 10 months today.*  April 24-February 24!  And it feels longer, because it technically has been longer. A year ago today, February 24, we were getting ready for her to be flown from The Brigham to Pittsburgh, and I wrote in my diary: The trip to Pittsburgh begins.
So much was unknown then, and remains unknown.

The last few weeks were up and down because Caitlin caught a cold after months of stability. The cold passed, but she’s been dealing with the inevitable after-effects. There have been some not-so-great days, but right now, things are okay.

In that vein, here is a report on WHAT IS GOOD:

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Puzzles! We are HOOKED on Liberty Puzzles, thanks to our dear friends, the Danforths, who sent us our first. Liberty Puzzles are beautiful, wooden, puzzles laser-cut into fantastical shapes.

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Henry!  Yesterday Caitlin said, “Aren’t you happy he’s here? It’s like a great TV show that’s always on.”

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Pittsburgh! I keep saying it, and it’s true: “Things could be a lot worse.” This is a nice city, with a lot going on.  I happened to stumble upon the opening of the above living art installation the other day. And on Sunday, Nick and I went on a “cello” hike, which consisted of a walk around the city that included tours of cultural venues, and ended with a private cello performance at the Capital Grille. After that, we had a glass of wine at a favorite little place. I usually have no problem playing it cool when I see a celeb, and there have been a lot around here because they are filming a movie, but it was hard to contain myself, I must admit, when right across from us, tucked into a corner, was Diane Keaton. She is just one cool cat. She’s one of Caitlin’s absolute favorites, and I wish Caitlin could have seen her.

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Friends & Family!  It’s been great to have people here. My sister and niece were here, then Diane & Katie and baby Diego. People send notes and Florida grapefruits, and crafts and cookies and flowers, and prayers and overall kindness that we are overwhelmingly grateful for.

–Maryanne

*It’s not uncommon to have to wait so long. Organ donations are not as plentiful as they could be, so please, if you agree that you’d like an organ if you desperately needed one, go on and register with the organ bank, if you haven’t already done so: http://www.organdonor.gov/index.html