SEPTEMBER 18 — Matches struck in the dark

Update needed, as Caitlin would say.

Three years ago today, on the 9-month anniversary of her lung transplant, during a walk around Walden Pond, I decided to start writing what I called “the Caitlin book.” I wasn’t even sure what kind of book it would be, or if I could manage to write it, but it seemed a worthy goal, and I had no idea what else to do with myself besides lay down and die.

I wrote ploddingly, like a zombie at first, and then as if in a fever. It took two years. I was fortunate in that it found a very good home, very quickly, last fall, with HarperOne, a visionary and soulful house tucked inside the busy and sometimes spirit-crushing world that is New York publishing.

Today, three years later, I can announce that the book is well into production, with a cover and beautifully designed pages. It is now a book that can exist in this world without me, and there’s a very large measure of relief in that.

People have been asking when they can pre-order and there are two answers: right now and thank you. Pre-orders help books so much, you may have no idea, but it’s the age-old story: the more interest there is in something, the more interest there is in something, and the more popular and supported that something becomes. I do believe that this book is very worthy of support, so thank you for pre-ordering, and sharing this page with others, and gifting it, and talking about it.

The book is about my search for revelation and meaning, for answers to the big life questions: Where is she? Is she?  Is there more to life than this life? Does consciousness survive death? Does my existence have any real purpose? Does anyone’s?

I wrote it, but some of it almost feels divinely downloaded. And Caitlin’s old-soul wisdom permeates the entire book, of course.

People ask about the title. LITTLE MATCHES is a riff on a few lines from a favorite book of mine. Those two little words —”little matches”—represent all that the book is to me, and what I hope it will be for others.

Part 3 

Chapter III

“What is the meaning of life? That was all — a simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead, there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one.”

Virginia Woolf, To the lighthouse

When you write a book, you also end up writing a little script whereby you distill its essence so that you can talk about it at events and such. Here’s what I wrote for the preface and what I know I will say over and over and it will always be a truth: I am not the first person to have lost what was most important to me. Humans lose every day, and lose hard: children, beloveds, sacred homelands, freedoms. LITTLE MATCHES is for anyone who loses hard and asks, Now what?

♥️ Thank you.

Pre-Order Links to Receive Your Copy on Pub Day:

DECEMBER 18–It’s a Go

Bottom line for all who are holding their breath:

At 8:30 am, Caitlin was taken to the OR. At 9:30, we got word that the blessed donor lungs are good and that surgery will begin as these lungs make their way to Caitlin. (It’s a carefully timed and choreographed surgical dance.)

This will be a long day, with few updates. It’s an extremely high risk surgery at this point, and we can only hold tight. This is usually a 12-hour or so surgery, but it can go for up to 20 hours, or even more.

I’ll update, during the day, with what I know and with little stories about how this all went down.

THANK YOU, ALL, for your prayers and love and light for our beloved Caitlin, and for the donor family and their holiday loss. I am holding them in my heart.summer-2012

The light in our lives.

–Maryanne, with Nick, Andrew, and Jess


DECEMBER 9–‘The Sickest Person in the United States’

Caitlin just got out of the OR again, where the head lung transplant surgeon here at UPMC Pittsburgh, Dr. John D’Cunha, inserted a trach. It gets the breathing tube out of her mouth, makes her a lot more comfortable, and helps her oxygen saturation.

He came in to tell us that all had gone well and that she was already in better overall condition because of it. He said, ‘I’ll feel a lot better when this one’s transplanted, though.’

Nick asked, ‘Anything?’

‘No,’ he said. We both felt that awful desperation that is forced to mix with patience. But the doctor went on, ‘But I have a good feeling about this weekend.’

And hope came back.

‘She’s the sickest person in the United States,’ he said. ‘She’s the sickest person who needs a lung transplant in the United States. You can quote me.’

Yesterday was my darkest day. But she pulled through and let me tell you that I can feel the outpouring of love and caring coming at us from everywhere. It’s palpable. While I was helping her relax before the trip to the OR, I put my hand on her chest. The energy coming through was like a magnet.

Thank you.

We are grateful to anyone out there who would consider the gift of a direct donation of life during a time of grief, as Nick’s family did when his brother, at age 29, died suddenly of a brain aneurysm.

Caitlin O’Hara is 5′ 2 with a blood type of O+ and is on life support at UPMC, Pittsburgh.

–Maryanne, with Nickscreen-shot-2016-12-09-at-1-31-36-pm


First of all, I want to say thank you thank you thank you to all the notes, messages, texts, calls, gifts, food—–all the LOVE we are receiving. The support is tremendous and allows us to keep vigil by Caitlin’s bedside, and I know she feels it.

They can’t keep her too sedated because it suppresses her blood pressure too much, but it really is best when she isn’t awake because she gets very agitated, and her sats (O2 saturation in the blood) go down. She’s very aware of what’s going on, and panicky at the knowledge that she’s lost control.

The person who has turned out to be best with her is Nick. He seems to know the right things to do and say. She’d been pointing at her stomach area as if something was wrong, trying to shout (she can’t make any noise with the breathing tube in), and he realized she was desperately asking if she had lungs yet.

He calms her, and reminds her that we are keeping her stable so that she will get lungs, and that he made a promise to advocate for her and he is doing that.


We got a lot of questions yesterday about the direct donation effort that our friend organized. People wanted to know more about it.

How Organ Donation Works

Organ donation is strictly regulated and highly ethical. When organs become available, lungs are not allocated according to need but to location. (This needs to change). For example, someone with a score of 50 in NC might get NC lungs that COULD get to Pitt in time for someone with a higher, more needy score of, say, 65.

When someone goes on life support and has a very high score–90+, like Caitlin has now, you “go nationwide”—i.e., you get first dibs on lungs that can be viably flown to you.

Yet still we wait. And for those who don’t know why, in our case, it’s because Caitlin is so petite. A small chest size can only receive small lungs. And because lungs don’t fully develop until about age 17, there’s a much smaller pool of suitable donors.

Directed Donation

When a family wants to donate a loved ones organs, they have the power to designate that the organs go to a specific person, despite location or score. (Naturally, the organs need to be viable and a match to the recipient.) This is a wonderful thing, and is what happened yesterday. These generous people, in their own grief, knew of our situation and wanted to help. Because Caitlin was the same size and blood type as the donor, it could have worked if the donor’s lungs had been healthy enough.

Caitlin O’Hara is 5′ 2 and has a blood type of O+ and is on life support at UPMC, Pittsburgh.

We are grateful to anyone out there who would consider the gift of life during a time of grief, as Nick’s family did when his brother, at age 29, died suddenly of a brain aneurysm.

Regardless of size and blood type though, there is always someone in desperate need of something. Please register to be an organ donor. Contrary to a few myths based in fear and ignorance, organ donation allocation is one of the most regulated and ethical practices in the country.

Register as an Organ Donor


DECEMBER 9–Currently Stable

Yesterday I wrote, “Now it is absolutely essential that she get back to a stable place, so she can receive another offer.”

It’s early morning on Friday as I write this, and I am happy to report that with the help of her fantastic team here, she did reach a tentatively stable place, finally, yesterday, and sustained it through her first uninterrupted night’s sleep since last Thursday, a full week ago.

I’m praying that today brings continued stability and an offer of lungs.

Life support machines are miraculous, but they’re not perfect, and there is a fine balance at play. Various factors–oxygenation, flow rates, coagulation, etc., are constantly monitored and fine-tuned, but it’s not possible to duplicate the miracle that is the human body’s maintenance of health, especially when one major organ has failed and another has been harmed by the other’s failure ( Caitlin’s heart).

–Maryanne, with Nick




DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.

Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.

But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.

She’s always been her own advocate, but she pulled no punches.  When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.”  To the attending ICU doc who was part of the  ECMO procedure: “I like you. You’re good.”  To the annoying resident  who started to examine her: “You just touched your hair, change your glove.”  To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”

But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.

Sleep deprivation on top of trauma. What a combination.

We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.

We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.

A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”

And that seemed to get through to her.

Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.

I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.

The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around !  3 1/2 weeks after this same trauma,  after transplant. I felt like I was seeing an angel.


JUNE 19–The Menu


Yesterday my dad sent my mom and me a photo of a little menu he had drawn up: “How to entertain yourself when your wife is in Pittsburgh.”  He had gone to the Ashland farmer’s market that morning — where he is a regular, making the rounds — after returning the previous night from the Vineyard, with fresh fish caught by his buddy there. The menu had smiley faces at the end of certain options. For Starters there were “Cotuit Oysters — Just Grilled :)”, Mains came with a choice of greens which included the option of “Snap Peas — as is. :)” There was Rosé from Provence to drink and “Trio of homemade cheeses by French lady from farmer’s market Ashland” as a finishing course.  (He doesn’t like sweets.)

This menu ripped my heart out of my chest.  I’m an easy cry — but the ‘sad dad’ phenomenon has always made me cry.  “Sad dad” is not about dad being sad…it’s about a dad, any dad, being sweet, vulnerable, nice, cute, making an earnest effort.  I suppose anyone, anywhere making an “earnest effort” is enough to bring me to tears.  Smiley faces, tryers for happiness in the face of difficulty. It all just gets me.  The first time I became aware of the emotional power of ‘sad dad’ was when I was about 10, not quite a teen but no longer a true child, and my father had secretly, without telling my mom, ordered a live Care Bear to show up at my birthday party. I was way too old for this, and when the Care Bear showed up I felt for the first time what it was to be embarrassed not only for yourself but for someone else, and wanting to protect them from feeling bad.  That combination of feelings implodes inside your stomach and turns into “sad dad.”  I shared this feeling with my friend Katie, who of course, as with so many things, understood completely.  Over the years our moms shared in our talking about the sad dad thing and we’d send pictures or share stories.  It would always be sweet and small moments — a t-shirt or a gift, a big smile and a wave.  They understood it with their fathers too, and other people could be sad dads, on tv or in movies, people we didn’t know. Eventually, in Katie’s case, she had a child and experienced sad dad double-time – sad husband, sad grandpa. Even a not-so-great-dad can elicit the feeling, so long as there is a painful moment of earnest trying, even if it fails. The complicated nature of all parental relationships — the drive we have to connect, protect, forgive, we are all vulnerable to that. The resulting feeling on our parts ends up being one of wanting to hug them and cry….and of course they are always baffled.  It seems like pity, I am sure. No one wants to be labeled ‘sad’ something.  I have seen Katie, or my mom or dad or Andrew look at my small frame (which doesn’t seem small to me), squeeze me and say, “Oh Kitten” and I think, “What? Don’t oh Kitten me, I’m doing just fine” …  No one wants to be the painful one, tugging at people’s heartstrings.  But we are, and thank goodness for that, because just as everyone wants to feel loved and protected, I think they also want to do the same for someone else.

My dad has spent his life providing for me, and subsequently protecting me.  At 32, I am not married yet or having kids, but waiting for a lung transplant and still dependent on my parents.  I am like the family doctor around here, watching their diets and advising them on prescriptions, checking moles, doing all the worrying.  Maybe it is the one way I can protect them all, until I can stand on my own and become independent.  Maybe that’s where sad dad really comes from: a need to protect.  I love him so much, and I suppose the things we love we want to protect, even in situations when we are not in the role of protector.  My dad and I have a great time together; there are certain specific emotional moments where, despite my closeness with my mom, I find myself reaching out desperately to my dad. I am not even sure if he knows it.  Perhaps they are why we chose each other in this life.  We clash too, and it has made us have to try harder to achieve the friendship we now enjoy.  We are a lot alike, and I think two people who are so alike do best if one is not so dependent on the other.

My dad is complicated––unafraid to change.  My mom once pointed out that if he sees something he doesn’t like in himself, he will and can change it…which is pretty rare. It is true. I like to think I have inherited that characteristic.  My dad always makes everything look beautiful – even if it’s just a snack of cheese and crackers, or rocks arranged on a beach, or items on a table while we’re waiting for dinner.  I did not inherit that as much.  He is an artist at heart who sees a unique way of combining things in everything he looks at.  Lately he has been sending me cards with birds on them.  My grandfather, his dad, whom they called “Gigli” (after the famous Italian tenor) because of his lovely singing voice, was a milkman who kept birds.  I love birds too, like my grandfather. My dad and I seek common ground.  We keep up our earnest effort, because we love each other, and of course, now, I have tears in my eyes.


And here’s to Vito, my own sad dad. Thanks for looking out for us, from wherever you are.


OCTOBER 24 — A Year & A Half

Caitlin in Boston at our favorite spot           (Sorellina).

So, an update. Today marks 18 months on the waiting list. A year and a half. It’s a longer-than-normal wait, no question.

Caitlin had her biannual transplant appointments this past week. There is a new surgeon here (there are 3 on the team), whom we met and really liked. Everyone on the transplant team seemed to be conscious of assuring her that she wasn’t being forgotten. They are obviously accustomed to dealing with a lot of frustration once the wait gets long. This is how it goes, though, and petite women like Caitlin are the hardest to transplant, because the chest size is small.

However, she’s very stable, and in good shape for surgery!  We do hope it will happen during a stable time like now. Every day waiting is another day closer… right?

We are fortunate to know a few other CF people, Caitlin’s age, who’ve been through all this and are on the other side, doing really well. It keeps us going.

The unexpected trip home was incredible. Surreal and wonderful.  We stayed for two weeks. I cannot convey how thrilled I was to see the star-filled night sky again. Caitlin saw friends and enjoyed favorite Boston sushi she’d never thought to eat again (no sushi once immuno-suppressed.)

For me, two best moments: One night, Nick and I were outside cooking on the grill, and my favorite, autumn Indian flute music was playing. The wind through the branches was perfect, soft. I was really home!!  I just closed my eyes and held onto it a moment.

The second was the night that Caitlin and I sat on the back step and watched the entirety of the  beautiful red lunar eclipse.

We caught the early foliage at home.

Andrew drove back with us and stayed for a good stretch. He and Caitlin discovered the beautiful, large Frick Park here, with accessible hiking trails, and visited it a few times.

Someone told me that fall lasts two weeks here, and it seems true. The skating rink in PPG Plaza is nearly installed, and the holiday lights are up. Holiday festivities officially start here on November 20, which is only a few weeks away, I guess.  We didn’t expect to see another holiday season here, but  we’ll enjoy it. Live trees aren’t allowed in our condominium building, so Caitlin’s getting her wish–a silvery-white, retro fake tree.


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SEPTEMBER 23–A Reprieve

That little back door.

We haven’t posted since July because there’s been little to say until now. Nothing’s changed for Caitlin but UPMC is having a bit of a crisis—mold in the cardio-thoracic ICU and elsewhere in the hospital that may have contributed to the tragic deaths of some transplant patients.

Until they get the problem under control, UPMC is suspending transplantation. We are going to take this totally unexpected opportunity to go home and breathe a little New England air for a few days.  Hopefully, UPMC will be up and running soon, at which point we will come back here to resume our  wait.

Caitlin and I have not been home since we drove here on December 15, and she’s feeling well enough to make the trip, so we are thankful to be able to turn a bad situation into something positive. I can’t tell you how much we look forward to seeing that welcoming back door flung wide open by Nick, the reluctant bachelor…. And we can’t WAIT to see how Henry reacts, since he hasn’t been home in almost 7 dog years~~!

There's no place..
There’s no place..

We’re grateful, too, that Caitlin will be returning to a safer UPMC environment. And do hope that the mold didn’t cause the deaths of those people. An all-around terrible situation. For more information on the mold:


MAY 5 — Update

Well, the purpose of this blog is to keep friends and family updated about Caitlin’s health/transplant. We were lucky she’s been so stable for so many months, but she has had a rough week+, and since I know a lot of you would like to keep her in your thoughts during her trying times, I thought I’d let you know what’s what.

Her heart has some issues, like supraventricular tachycardia (rapid heartbeat) and now, pulmonary hypertension that has worsened as the lungs worsened. Episodes have been managed with the right dose of beta-blocker, but about ten days ago, she started having issues. Long story short–a trip to the ER on a Saturday night ended up in a 4-night stay as everyone worked to adjust her dose and get it under control.

She came home last Wednesday and seemed well. But by Thursday she was looking anemic, listless; it was hard to cough and clear her lungs. She was in overall pain. Her sister-friend Katie visited for 2 nights, and was so wonderful and loving and helpful. By Sunday our Kitten was a bit better, although starting to feel new pain in her lung.

We were getting ready to watch MadMen when an evacuation alarm went off in the building here. She had to climb down 10 flights of stairs. (There was no emergency.) It took everything she had, and took away the gains. There was a marathon in Pittsburgh on Sunday, and I would bet that no one post-marathon felt worse than Caitlin did post those 10 flights. She said she felt like her legs had gone through a meat grinder. The pain in the lung worsened and kept her awake all night.

Yesterday at noon, we returned to the ER for fluids, x-ray, CT scan. Last night she was re-admitted to start a course of IV meds, and re-evaluate the heart, which hadn’t completely settled down on its new dose of beta-blocker.

This morning, she reported that the lung pain had eased a bit. They are putting a PICC line in (a long-lasting IV line) at the moment.  We’ll see how today goes. The plan will be to do the course of IV meds at home. We are old pros at that.

Thanks for thoughts, prayers, good energy, all of it. She needs deep sleep, a calm heart, weight gain, and a perfect-match lung transplant!


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