Category Archives: ethics

SEPTEMBER 26 — The Caitlin Book

From a little notebook of Caitlin’s:

April 27th, 2012
I am grateful for —
My parents
My friends
My apartment & car
My dog
My ability to be able to go out and have fun even though I’m sick.

In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked on my new novel and that it would be easy to continue to ignore it, indefinitely. So I started carving out a daily chunk of time. I would set my timer to 30 minutes and write, with full focus, for at least that amount of time. At the end of each session, I circled the date in red.

It’s amazing what you can do with 30 focused minutes. I managed 254 pages–a decent draft of a new novel. In 2+ years, I did not miss a day until I finally gave up, in the ICU, on December 11.

Last week, on September 18, which was our 35th wedding anniversary and the 9-month anniversary of Caitlin’s transplant, Nick and I walked around Walden Pond.

walden.PNG

Walden Pond, 2017

When we came home, I started setting the timer again — for 33 minutes, in honor of Caitlin.  But instead of working on the novel, for the moment I’m compiling parts of this blog and other words into something that I’m just calling “the Caitlin book” for now.

At this point, it is painful. I started at the beginning of the blog, but now I’m into the December posts, which I had not read since I wrote them. Reliving each shock after shock, the kernel of faith, the hope, the desperation, and then that final joy when she went into the OR on December 18 and received lungs.

It’s still impossible to believe things played out the way they did.

But a week does not pass that I don’t receive a blog comment, an email, or a hand-written note from someone, somewhere, who has been bettered by Caitlin’s story. Here is a recent one (accompanied by heart-shaped rocks for Caitlin’s memorial). It’s a reminder of why I want to create something more permanent than blog posts in the ether.

lucy letter

It will not be a story about anger and illness. It will be the story Caitlin wanted told: about light, love, and fierce positivity; about life and afterlife.

I am still figuring out the form it will take.

I told my wonderful friend Jane, in Pittsburgh, a beautiful writer, that I was doing this, and she responded:

Happiest thing in your letter: you’ll start the Caitlin book! This has to be done. This is going to be so wise, so beautiful, such an honoring of life, of soul, of friends, of motherhood, of grief, of CAITLIN. It is going to be a unique gift to the world. And to many many people who suffer terrible illness and loss, But really a gift for everyone. Mothers! Daughters! People who need Inspiration!

I have printed her words out and hung them over my desk, to keep me going.

 

–Maryanne

DECEMBER 24–All is Bright

IMG_0345.JPG

“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

DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

IMG_4157.JPGWe are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I  spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess.  Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The  photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting.   (Herald story)

Screen Shot 2016-12-23 at 6.19.21 PM.png

This beautifully-lit face! Mother’s Day, 2016

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I  never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come.  (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream.  We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

IMG_4148.JPG

–Maryanne

 

 

DECEMBER 21–Our Light

IMG_4124.JPGWord is getting out, so I will speak. After my light-hearted update yesterday, everything  spiraled out of control. After an early morning EEG which showed slowed brain activity, morning rounds showed that she had no responses at all. Her left leg had no blood flow below the knee, contributing to her worsening condition, and they had to remove it. Then a CT scan showed a massive brain bleed, the one thing she had always been terrified of. There was no hope.

The lung allocation system is so broken, friends. If she had received these perfect lungs earlier, all would be different. She should never have ended up on life support with the score she had. All the allocation systems are different, for each organ. Liver is the only one that works—at a certain score, need overrides all regional allocation.

Her doctors were in awe of her—that her tiny body endured so much and kept going.

Yesterday, Sinead experienced a reading of Caitlin that was urgent and stunning and accurate, as all of her readings are. She spoke to the surgeon, on his way into the operating room, and he listened.

The wisest doctors know that this life is mysterious, and that they don’t have all the answers. The care she received at UPMC was loving and extraordinary. We are grateful.

We numbly stumbled through these last weeks, but looking back now, I realize with horror all she had to endure. She was terrified when she was put on ECMO: essentially locked-in, immobile. For the first two days, she could speak, but got so agitated she had to be intubated and sedated and then she was in and out of consciousness.

And before that? The last two and a half years, every day was a wake-up-and-do-it-all-over-again effort to stay healthy enough to survive the transplant surgery: force down so many calories in an effort to maintain her 97 pounds, lengthy breathing treatments, chest PT, exercise.

IMG_3927.JPGAll the while, she tried to “have a life.” She was teaching herself guitar until she could no longer sit up and hold it properly. She worked tirelessly, from afar, to help create and run the Friends of the Prouty Garden; an advocacy group for Boston Children’s Hospital’s world-famous healing garden. The group, despite massive outreach and supportive press, ultimately failed to save the garden. The day the 65-foot Dawn Redwood was cut down was the day she finally crashed and ended up on ECMO.  I know that seeing that tree killed  killed something inside her.

Nick is broken and strong at once. She was so lucky to have such a giving father.

Andrew—-never was anyone so devoted to someone. Caitlin loved him with all her heart.

Jess flew in like the wind last week, like the angel she is, after having her chemo in San Francisco. She had to fly back for her experimental cancer drug yesterday and so was not here for the end. She will join us in Boston tomorrow.

To all of our family and her closest friends: She loved you all so so much!  She was having an argument with me about something once, not long ago, and she said, “You think all this is important but all that really matters is loving people and being kind.”

We are going to go home and figure out what kind of service to have.

She did not want to be buried. She did not want to be cremated. She wanted a mausoleum and we are arranging that. I know she wants a service where everyone can have a good cry and a couple of laughs. We will figure it all out and I guess I will post details here.

Caitlin and I do believe that the soul lives on. I know she is out there, but I will just miss her so much! She is my soul friend. She is my person. I really don’t know how I will live without her. When she was very sick twenty years ago, I remember thinking, “If she dies, I’ll kill myself.” I know I won’t do that, but this gaping hole is never going to close, I know.

We do have weird things happen with “pennies from heaven,” and last night, as they turned off the ECMO machine, I saw there was a penny on it. Birds, always a motif in Caitlin’s life, were doing all kinds of strange things this week. I wanted to read them as signs she would be okay, but I feared they were signs that she was going off into the light.

Sinead sent me this message this morning:

IMG_4127.PNG

Caitlin Elizabeth O’Hara

July 31, 1983—-December 20, 2016

a beach 2.jpg

Today is apparently the darkest night in 500 years. The solstice and an eclipse. Please look at some form of light today and remember Caitlin and the light she carried within her all her life. Share that light. Please keep Caitlin’s light alive.

She loved Freddie Mercury. And loved his cat vest. And this song, which always breaks my heart.

DECEMBER 16–A Matter of Ethics

 

Many people rightly wonder why Caitlin couldn’t be transplanted at home, in our world-class medical city, Boston. The answer is disturbing, and points to a flaw in the medical system. It’s a fight she was gearing up to fight, one she plans to continue after transplant. Here is a draft of a letter she was working on in October of this year:

I grew up outside Boston, and have been a patient at Children’s since I was diagnosed at age 2 with CF, in 1985. Once an adult, I transitioned to inpatient treatment at Brigham and Womens Hospital (BWH).

In spring of 2006 I was still “too healthy” for transplant, but I began the process at BWH at my doctor’s urging. BWH was one of the hospitals who transplanted cenocepacia patients like me — along with UPMC, Cleveland Clinic, Duke, and a handful of others.  “Better to get started early” was the thinking, “so that when you get really sick, you are ready to be listed.” I began the evaluation as an an outpatient and completed a significant amount of its required tests.  I continued to remain fairly stable in my health.

Then, in 2008, an administrative assistant from BWH called me, out of the blue, as I was getting ready for work, and told me they would no longer be able to offer me a spot for transplant because of my cenocepacia.  Things spun for a minute — “No, I argued, “You already know I have cenocepacia, we’ve been over this, your program takes cepacia patients.”

There had been a change in policy, the woman said.

I wasn’t sure what to think. I was confused before I could be upset. The woman said I should have received a letter.  I hadn’t, although it did arrive in the mail, weeks later — simple and boilerplate — another baffling link in the chain of events.  Soon, almost all of the other hospitals began to deny transplant to cenocepacia patients. I grew panicky.

Eventually, I worsened and did my evaluation at UPMC. I was listed on April 24, 2014. Because I would need to reach UPMC in four hours, we set up emergency jet service (which is never a guarantee), and began to wait. When December came, my mother and I moved to Pittsburgh to “wait out the winter.”

Winter passed. May of 2015 found me sick and in the hospital. It made no sense to go home at that point, and surely I would be called soon, was the thinking. We reluctantly signed a new lease on an apartment.

A year passed.

I have now been listed at UPMC for 2 ½ years. It’s taken an incredible emotional and financial toll on my family. I own an apartment in Boston, right around the corner from the hospital, that sits empty while I wait here.

So why did all of this suddenly happen?

A study in the American Journal of Transplantation in 2008 concluded this :

Cooperation between CF treatment and LT centers will hopefully provide new insights into virulence, transmissibility and treatment regimens for this unique and challenging pathogen. More specifically, further studies to identify which specific strains of B. cenocepacia may be more virulent, the mechanisms behind the virulence in such strains and investigations to tease out what host factors might influence progression of the infection in the CF population
should be a priority. Until then, we recommend the careful screening of all CF patients for BCC and excluding from LT those harboring B. cenocepacia, regardless of susceptibility profile.

That conclusion, and recommendation, was made despite the fact that the study was based on  a very small group of people with cenocepacia – 7.  Of those 7, 3 died of Burkholderia-related complications, 2 died of other transplant complications, and 2 were …alive.  The data of these 7 individuals was taken from groupings of people who were transplanted between 1992-2002, a time span that began 16 years prior, when many programs were just beginning to offer transplants, and ended six 6 years prior to the study’s date of publication.  The group of non-burkholderia CF patients used as comparison was a study of 59 patients.  9 cultured other forms of BCC, and as mentioned before, 7 harbored cenocepacia.

Being that there are so few studies on cenocepacia and their outcomes, and even fewer at the time the article was written in 2008, the conclusions drawn cast a wide net across the transplant community.  I personally was immediately removed from the transplant list at Brigham and Women’s.  I was upset, but it would still be a couple of years before the reverberations of this decision were truly felt, when I got much sicker.  For some, they were already being felt, and for others they meant the arrow pointing towards death was now certain.

This situation is a serious matter of ethics.

The blanket exclusion of one very small group of people from almost all centers, based soley on the organism that they culture, is ethically wrong.  Not only is the data presented about cenocepacia and transplant anecdotal and outdated, but the process of eliminating one very small minority group like this on that outdated evidence is directly in contrast with the typical “case-by-case basis” methodology of evaluating patients at most centers.

Transplant centers certainly must reserve the right to evaluate and accept, or reject, transplant candidates. But it should be on a case by case basis.

Where is the logic in being pointed in the direction of certain death, because the risk of possible death is too great in the other direction? Is that what lies at the core of medicine? Balancing risk, but to a fault?

To those who say “it’s a complicated issue,” I say, “It’s not, its a simple issue, with a complicated story.” At 33, I have end-stage CF that ends with certain, early death.  There exists a potentially life-saving surgery available, but because this surgery includes a risk of death, I am being denied opportunity for it by nearly every center in the country.  When a man is drowning, does the man on shore say “I can’t save you, we could both drown?” Sometimes he does and he has to live with himself, because that person will certainly drown without help.  This is even simpler than that.  No surgeon will die if I die, no doctor or caregiver.  Is my chance at a year, or two, or five at life, worth less than someone else’s? Who gets to ‘decide’ who uses organs “to the fullest?”  I challenge you to ask anyone who has had a transplant if they’d do it all over again even if they knew they would die after only a year, and you will hear a resounding, unanimous, YES.
UPMC Pittsburgh practices real medicine. This transplant team is not in the business of cherry-picking the candidates they deem most likely to survive, in order to improve their statistics. Instead, they accept high-risk, last-resort patients like me, in an attempt to save our lives. I am grateful to my team: my compassionate pulmonologist, Joseph Pilewski, and the brilliant surgeons, Drs. D’Cunha, Shigemura, and Hayanga.

—Caitlin O’Hara