Category Archives: life support, ECMO

JUNE 20–Solstice to Solstice

I am not the first person to compare time to a river, but from my desk here, the comparison is ever-present, the imagery apt. Drop something into the river and off it goes. It’s never coming back.

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It’s six months today. And a Tuesday, just as it was then. Another solstice.

And the great world spins.

Inspirations–4 of Them

1st-CAITLIN

When Caitlin was born, she weighed 9.4 lbs and measured 21 inches long. For the first year of her life, until she started developing one pneumonia after another and ‘failed to thrive,’ she was in the 95th percentile for height & weight. And when she was little, I mean really little–1st-2nd grade little– she loved to run. She could run as easily as anyone else and always won the races.

Years later, we would all do 23andMe and see that she and her naturally-athletic father shared a special genetic variant.

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I always wondered what if.

As a college freshman in DC, her up-and-down health was at a ‘good’ level and she rediscovered running–doing miles at a time, big loops between the Lincoln Memorial and the Capital. Even after she transferred to Boston College because of declining health, she liked to run when she felt well enough. But by 2004 or so, she needed oxygen to sleep and to fly, and  to do pretty much anything that raised her heart rate. (Blood oxygen levels drop with these activities.)

By 2011, she had to move to an apartment with parking and an elevator. She needed to plan trips around what kind of walking or climbing would be involved. But she and Andrew discovered that she could still ‘hike.’ Andrew would carry her up a trail and then she could walk down.

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Carried to the view by Andrew

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In Ireland on her 30th birthday.

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Caneel trail on St John, 2013.

Eventually, she bought one of these things: an adult carry pack. It made her weight easier for Andrew to carry.

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I would like to donate hers. I hear they’re good for autistic kids?

The last couple of years, with hope for new lungs a reality, she cautiously let herself hope that she would really run again. And just last fall, she bought herself this book, and had a plan for recovering, post-transplant, by climbing all the featured stairways.

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2nd-JANET

By chance, two of Caitlin’s cousins challenged themselves physically and mentally this past weekend, in honor of Caitlin. In Australia, Janet Jordan faced her lifelong fear of heights and climbed the Sydney Harbour Bridge to raise funds for the pediatric Cystic Fibrosis Unit at the John Hunter Hospital in Newcastle, NSW.

On her page, Janet talks about a dream she had in which Caitlin challenged her to climb the bridge. As the day of the climb approached, nerves set in. On Saturday, she wrote, “Today’s the day I face my fears, and keep my promise.”

Her next update: “I did it!! What started at 4.30 with an hour long safety induction ended at 7.50pm with the greatest feeling in the world. Photos to come.” 

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3rd-MELISSA

Back in western Massachusetts, Caitlin’s cousin Melissa Bavaro Klevans and her husband Sam challenged themselves to a 26-Mile, 1-Day EXTREME Hike.

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                  ⬆️ One of those peaks is called Misery Mountain.

The hike started pre-dawn and took them 13 hours to complete. It was tough and toward the end, Melissa’s feet were in such pain she didn’t think she would be able to finish. But she looked at Caitlin’s photograph, took off her boots, and hiked to the end in her socks. She shared her thoughts with me:

“After the hike I was able to process everything that I had gone through on the mountains and it came down to this one little thought. It’s NOTHING compared to what my sweet and beautiful cousin had to go through. Nothing.”

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Melissa, with Caitlin’s headscarf around her neck.

About the breakfast the morning after the hike, she said, “We were able to speak if we wanted to. I hate public speaking, but I needed to say something. I talked about organ donation. I expressed the importance of going online and signing up and that the license sticker was not enough. The great thing about me moving past my fear was that I got through to people. I had at least four people come up to me after and thank me for my speech. They had no idea, as most people don’t. That was powerful.”

4th-BARRY

While I was in Pittsburgh, I met some incredible people. One of them was Barry Lavery, who went into the hospital for routine surgery three years ago and discovered he had ALS.

Like Caitlin, Barry has faced his fate with grace and humor and tenacity. He and Caitlin had lots more in common: a love of philosophy, a love of birds. Wise, witty senses of humor. But they never got to meet.

He’s now on hospice care and he tells me that when he “hops his perch,” he’s going to seek out Caitlin. “We will drink good Haitian rum, grow wings and feathers and soar…

Last week Nick and I were out on the river at dusk, and the air was full of the sounds of birds and waterfowl. I sent Barry a little video, to share the moment. He texted a response that ended, “Let the river heal you. Remember the quote from a River runs through it.”

💫

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–Maryanne

 

APRIL 24–Three years ago today.

Caitlin was actively listed for a lung transplant on April 24, 2014. We were ready, expectant, full of hope.

She kept herself strong and she kept herself busy.

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She was grateful.

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She had plans.

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We never, ever expected that she would have to wait 2 1/2 years. But when she went into the hospital for the last time, with her high score, she was told that offers were coming in. We figured it would happen any moment. We were excited and lighthearted, and on the night of November 20, she asked me to push her chair through the hospital as fast as I could, to music.

In a just world, she would still be with us.

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ORGAN DONATIONS ARE DESPERATELY NEEDED

Spread the word, far and wide.

MARCH 27–I Keep Thinking..

I’ve never been one to say “life’s not fair,” or to be angry about Caitlin’s CF, or about her (not-inevitable) decline and need for a lung transplant. I’ve always tried to be philosophical and optimistic and I truly do believe that tough experiences ‘grow your soul’ and make you a more compassionate human being.

But.

Nick and I are in Florida, at a hotel with an atmosphere that feels more like our beloved Virgin Islands than “Florida.” The hotel plays soft reggae in the background. There are palm trees and thatched buildings and the water here is a Caribbean blue.

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Norman Island, BVIs

Being an only child, Caitlin tagged along on pretty much every trip we ever took–either by herself, or with Katie, or her boyfriend.

So I keep imagining her here–ambling in her slow way across the pool deck. I see her big sunglasses, her long hair, and I keep thinking I was a fool to have had one hundred percent faith that the transplant would happen, and that she would prevail.

I want to go back and cherish every minute even more than I did.

I keep thinking of her first days on ECMO and how the surgeon said, “We’re going to get you transplanted, Caitlin.” And, “I have a good feeling about this weekend.”

He was trying to be positive, and I’m sure he truly believed his own words.

I keep thinking of my own words, written in Cascade, where I describe a feeling that has always haunted me and which haunts me now:

There had been other such days—the long-ago morning her mother took sick, the afternoon the telegram spelled out the fact of her father’s first heart attack. At the ends of those days, Dez had looked back through the blur of hours to the innocent mornings, which started so normally. An egg, a piece of buttered toast, plans for this or that. And if those days had stayed normal, if the flu had passed through her mother’s body, through her brother’s, if her father’s heart had not seized, there would be no marveling at the day’s normalcy, no reeling from being blindsided.

No, normalcy is taken for granted until it’s gone.

–Maryanne

DECEMBER 26–Boston Globe Tribute to Caitlin

Deep thanks to Bryan Marquard and The Boston Globe for writing this beautiful tribute to Caitlin, and publishing it on the front page today: Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33

Caitlin’s death was ultimately caused by her too-long wait. The surgery itself was technically easier than the surgeons had anticipated. That part had gone very well. Her problems were all caused by having been on life support for too long. If she had received those perfect lungs earlier, there would only have been a happy story to tell.

One of the most important lessons that can come out of this tragedy is how vital is the need for organ donor awareness. In lieu of any flowers or gifts to us, please register today to be an organ, tissue, and cornea donor. (The DMV “organ donor” sticker is not enough.) And please help to dispel the wrongheaded myths about donation. Organ allocation is one of the most tightly-regulated and ethical institutions in the country. Register as an organ donor

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Lake Erie, with Andrew, 2015

DECEMBER 24–All is Bright

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“Like the Madonna,” her Irish great-gran would most definitely have said.

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy.  The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

 “There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

 —Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now.  Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

12/19, 5:30pm — Into the OR

Let’s hope they find something that’s causing these increasing lactates! This OR trip is proactive and good. Caitlin has a great medical team!

My aunt just asked a good question: Is she aware that she’s been transplanted?

The answer is YES.

She’s listening. We told her. We told her that the lungs are perfect Harry Potter lungs that are a perfect fit. Her blood oxygen saturation is 100 percent. (Before transplant, it was in the low 80s.) The pulmonary pressures on her heart have gone way down. As soon as the rest of her regains its previous good health, she’ll be able to enjoy her new ability to breathe again. What a gift, what a tremendous, generous gift.

All we know of the donor was that he/she was very healthy.

—The Team

DECEMBER 19–Another OR Visit

So Caitlin wasn’t going to make this a Hallmark Christmas miracle, no. That’s too easy, too sentimental, and Caitlin, compassionate as she is, is not one for easy sentiment.

This is tough stuff she’s going through. She’s still in critical condition.

The lactate levels continue to rise. That indicates there is dead tissue somewhere. They need to find out where. They don’t think it’s coming from the left leg but will have Vascular look at it while they are in the OR.

They are going to make a small incision in her abdomen and visibly check the liver and the bowel. Hopefully they will see something they can remove…  in any case, they will leave the incision open and covered for a few days so they can have access to the area and see what’s what. They will also open the chest covering, clean it out, and put another cover on. (Her chest is so swollen they can’t close her up yet; this is common after transplant). They will also do a bronchoscopy (clear out the lungs), as a lot of blood got down there yesterday.

This will happen in a few hours. They are basically going to move her entire “support” system into the OR, so as not to disrupt her as much as possible.

Everyone who worked on this very high-risk surgery has been in awe of Caitlin and how rugged her tiny tiger body has proven to be. But she’s in a quite hellish place right now, I won’t lie. A photo would scare you.

We need to stick with her. We knew it would be a very rough road, post-transplant, and it certainly is proving to be. But a successful outcome is the prize: Climbing hills in San Francisco with Jess, hiking in Maine with Andrew, traveling freely with her mostly companion (me) again.

I’ll send out a post  when she goes into the OR. The incision is simple, but how much time in there will depend, of course, on what they find.

–The team