Category Archives: transplant

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.

FEBRUARY 23– Eleven

A powerful pulsing of love in the vein

We are in Arizona. We packed up Pittsburgh, sent all those boxes back to Massachusetts and came to another ‘bigger-than-we-are’ place to regroup.

Pittsburgh was tough. It was also comforting. We were able to see a few of the good friends we made there. Mary and Ralph, our wonderful neighbors in our equally wonderful building, hosted a gathering for us on Friday night. We included some new friends: Diane and Mallory Smith, who, like us, had to relocate to Pittsburgh to wait for a lung transplant for Mallory. They’ve only just arrived. They are from LA, a crazy long way from home. We introduced them to some of our Pittsburgh people.

People have asked, as did Mallory’s mom, Isn’t it hard to be with people who still have a chance? Or who have had successful transplants? Of course. But is it easy to be with them once you overlook your own pain and come to love them and realize that you want only good things for everyone? Yes.

Organ donor awareness must continue, please.  For the brilliant and beautiful Mallory, and for everyone else.

Boarding a Greyhound in Pittsburgh…

On Monday the 20th, at 5:45am, we left in the dark. It was so hard to walk out of our home of the last two years, to take one last look and close the door.

We had arranged for our favorite driver, Jim Stanley, to pick us up. You feel safe with Jim. He is an ex-Marine and an all-around good guy. He drove Nick and all of our visitors back and forth from the airport the past two years.

Jim is also a very talented acoustic guitarist. As we merged onto the on-ramp, he said it was hard for him to talk about hard things, but that he wanted to tell us that our family had inspired him, that witnessing the support of all our friends and family had made a strong impression on him.

He said, ‘Your daughter was teaching herself guitar.’ And told us that after we flew in from Boston picked us up, he had been inspired to do something he’d planned to do for 20 years. His brother, he said, had battled cancer on and off for years, and had lost his struggle at age 41. The two used to play guitar together and Jim had always meant to record a favorite song of theirs.

Well, he’d finally done it. He said, ‘I’d like to play if for you and if you like it, I’ll send it to you.’

The Sound of Silence filled the dark car. A gorgeously complicated acoustic arrangement that was perfect, beautiful. Nick and I clutched hands, and he passed me a tissue, and as we sped along the highway, high in the sky was a waning crescent moon, inverse to the waxing crescent moon that had hung outside the medical jet when we flew to Pittsburgh, 3 years earlier, so full of hope for a speedy and successful transplant.

Our plane departed from gate 33. A few hours later, we landed in Phoenix.

Arizona

In July of last year, I wrote on this blog about coincidences, and about how Caitlin once had something called a soul reading done. The reader had asked Caitlin if anything had happened to her when she was 11?

Age 11 was the time she came very close to dying. After the year of surgeries and complications she endured (she would hate me using that word–she so disliked drama regarding her health), Arizona was our first family trip.

I was struck, back then, by how calming this place was. It still is. We’ve been hiking the desert mountains every morning. It’s so quiet, so still. There are so many birds to remind us of Caitlin. We’ve shouted her name into the canyons and the echoes are pleasing.

Penny sightings

I had never heard of pennies from heaven until about a few years ago, and then only from my sister, the very practical Kate, an RN. But Kate is also rather intuitive, and when she says something in her no-nonsense voice, I tend to listen, even though this particular  phenomenon seemed too far-fetched to make any sense.

But I’m just an earthling, a human. What do I know? And anyway, regardless of how coincidences happen, the way you read coincidences can be helpful with self-reflection. Here are some recent, striking penny stories:

We knew people could have ‘dry runs’–offers of lungs that didn’t work out, but we didn’t really expect it to happen more than once. At one point during the last week that we crisis-waited, I went into the hospital bathroom I used each morning and saw 4 pennies. She’d had 3 dry runs at that point. I hoped those pennies meant she would indeed get a transplant, get one more chance.

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Washroom pennies

She did. She got her transplant on the 4th offer, on December 18th, one of the happiest days of the last three years. But it was all too late for her beat-up body.

On December 20th, as they turned off the ECMO machine, I saw that there was a penny on it.

On December 21, Nick and Andrew and I walked over to the Fairmont to get out of the apartment, to get a quiet lunch, to get out of our heads. The Fairmont is two blocks from our apartment, and to get to it, we had to walk through all the holiday goings-on–the ice rink and gingerbread house display signs, the European Holiday Market stalls in Market Square.

On our way back, as we were walking by the ice rink, an urge came out of nowhere. ‘Let’s go see the gingerbread houses,’ I said. I veered sharply to the right to lead the guys toward the building where they were on display. Near the entrance, I saw a bunch of pennies on the ground. I picked them up, counted them.

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The day-after pennies

There were 11.

I put them in my pocket and walked into the crowded atrium containing the giant displays of gingerbread houses. Standing right in front of me was Kwesi, a young man who had a lung transplant in 2014. I’d only met Kwesi twice before. I knew he lived miles from downtown. I couldn’t believe he was right there in front of my eyes and I almost couldn’t speak. But I did, and I stammered something about Caitlin.. and then we left.

Because I’d had no real interest in seeing the gingerbread houses. I’d seen what I was supposed to see. 11 pennies and a successful transplant recipient.

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11 Mourning Doves

11. 11 has been knocking on our heads. Before coming to Pittsburgh to help us pack, my sister had 3 instances of mourning doves settling in the branches of a tree outside her window, not on the ground the way they normally visit.

Each time, the branches contained 11 mourning doves. Each time, she took a pic.

Back in the old AOL days, I sometimes lurked inside a chatroom full of astrologers. One of them struck me as bright and very good. Once, I emailed her a quick question about Caitlin. She ended up responding at length, gratis.

First, I need to tell you that the prime focus of Caitlin’s chart is her sixth house. For all intents and purposes she has 4 out of 5 of what I call the “god” planets there. The god planets are the planets that represent energy we think of as coming from God, as opposed to those energies we ordinarily think of as “human.” And 3 out of those 4 were, until recently called “malefic”….Pluto, Saturn, Uranus. That is way too much energy for one house, especially one having to do with health.

She then told me that Caitlin was lucky to have survived the year she was 11, that there had been great stress on her from several angles in her chart.

During her wait for transplant, Caitlin’s lung function hovered around 20 percent of normal. Last week, I found a pulmonary function report from the year she was 22, 11 years ago. Her lung function was averaging 35-40 (bad) then, and at one point was as low as 24.  Those were the years when she really declined, when she started needing oxygen at night, and to fly, when she avoided stairs and much of regular life.

She lived with invisible struggles for a very long time.

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PFT report, age 22

It’s crazy, but 30 percent can look like this:

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One tough kitty.

CF. It’s a demon and it’s mostly, until its cruel end, invisible.

So maybe 11 is a reminder that we got 22 ‘extra’ years. That Caitlin lived 33 years with a killer disease during this time of miracles and wonder that we live in.

It does provide some comfort.

 

PS to those in the know:

Across the Universe is playing in my hotel coffeeshop right now, as I get ready to publish this post.

FEBRUARY 7–(Turn and face the strange) Changes

I have a cold and haven’t been able to breathe through my nose the past few days. I’ve been trying not to mind. It’s the least I can do. Being unable to breathe through her nose was just one more thing that Caitlin had to deal with. Her sinuses were blocked–a common CF problem–and after 2 1/2 years of nonstop oxygen blowing into little nostrils, they were irritated as well. She got to the point where she had to sleep half sitting up and tilted to the side, against four vertical pillows, to try and get relief.

Not that she ever slept through the night–she also had to take a beta-blocker every day at 4am. And then 8 hours after that, and 8 hours after that. Her failing lungs had put such a strain on her heart.

As Andrew said in the service, Caitlin climbed a mountain every day. He is planning to climb Mount Kenya this week. He wrote: “The air on Mt Kenya will be so thin. I will struggle to breathe. I’m actually looking forward to it.”

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Andrew and Jess at 6389 feet

Every time I wonder whether I should still write these posts, I get another email–often from someone who didn’t even know Caitlin–thanking me for writing them. Even when I write about things like altitude.

Not all that long ago, in 2013, Caitlin and I drove out to Lenox to visit Edith Wharton’s house. As we drove along the turnpike, she began to feel tight, breathless. As we climbed a slight incline, it occurred to her what was wrong. She checked the altitude app she kept on her phone. 1200 feet.

She was still living independently then, and functioning ‘normally,’ but that change in altitude was high enough to hurt.

This past weekend, Nick and I spent two nights in her apartment. We are trying to use it, take comfort in it, and slowly accustom ourselves to this vast change.

One afternoon, we walked home from Back Bay via Charles Street, which I had been avoiding because memories are literally everywhere on that street. After college, Caitlin worked at the Polly Latham Asian Art Gallery there. And the yearly Holiday Stroll, in 2013, was the last time she ever went to an event without wearing oxygen. Two days after that stroll, she was in the hospital. She began to need oxygen 24/7. She knew, although the rest of us refused to believe it for a while, that the oxygen was permanent. The forever-change we had been dreading forever had come, at last.

Jess left me a message yesterday. One of the things she said was something along the lines of, My mom always said the only thing that’s certain is change.

Polly Latham closed her storefront quite a while ago. I think the space has been a few things since, but I somehow knew that something new had opened there. As we approached, Nick was doing a nice job of listening as I tearfully described the vanilla eclairs Caitlin used to love at Cafe Vanille. (That space has changed, too. It’s now Tatte). And how she bought me a favorite shirt for Christmas at Dress (which used to be in a different location). I was outright weepy by the time we got to Polly’s old shop, remembering the  layout: big front window looking into a small display area, then a tiny staircase that led to an upper balcony area where Caitlin used to work and where she would give everyone who came through the door a big, bright smile.

It’s now a handmade jewelry – slash – antique jewelry shop.

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Heart, bird, wings.

And like everything these days, it felt like there was a message in this window.*

 

*More about messages, signs–the wild stuff later. Like Caitlin listening to David Bowie in the sky. Still need to wrap my head around it all.

–Maryanne

 

 

 

JANUARY 31–Half-Birthday, Groundhog Pup

I’ve been doing some reading about grief and neural pathways and how grieving morosely can become a chronic habit. I believe that eventually we want to be in the position of celebrating Caitlin’s life as opposed to mourning her death, as a friend said last week. So I’m going to make an effort right now to remember Caitlin’s great sense of humor, in honor of her half-birthday.

Yes, it’s her half-birthday, something I always jokingly ‘celebrated.’ It started when she was little and I used to send cupcakes into school on January 31.

This Thursday, February 2, is also Henry’s 13th birthday. Well that seals the deal, Caitlin said when the breeder told us he was born on Groundhog Day. Groundhog Day was one of our family favorite movies. Henry was meant to be ours.

We could never have imagined that we would end up living our own version of Groundhog Day in the very area where the movie takes place. Two years ago today, Facebook Memories tells me, Caitlin and I drove out to Punxsutawney for the weekend festivities. We laughed the whole time, and bought ourselves a chainsaw-sculpture groundhog.

We continued to laugh. Here’s a Facebook post of mine from just a couple of months ago:

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As for our real little groundhog pup, Caitlin realized she had totally come late to the game with making Henry a famous Instagram dog, but went ahead and made an account for him anyway, about a year ago. For a look at her humor and to remember her with some smiles, here we go:

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PS:

An interesting thing about Groundhog Day, the movie, and why it really is so great, is that the more you watch it, the more you realize that it really is an excellent illustration of the evolution of the human soul.  New York Times article: “Groundhog Almighty.” 

 

 

 

 

 

 

 

 

JANUARY 30–Windows Left Open

I haven’t seen Hamilton yet, but I know the music well and I keep thinking of the lyrics… The world turned upside down 🎶      My God, it’s so upside down right now, but everyone’s protesting, speaking up. It feels good, but if you’re feeling helpless, you can start here: Join the American Civil Liberties Union

Caitlin’s father is an immigrant from Ireland, a guy who came here without a green card, and worked hard and who has been employing dozens of people for thirty years.

I love this photo of Caitlin on a cold night—but just wearing a headscarf is a sign of bravery these days.  I can easily imagine some ignorant bully verbally or physically abusing her because of it.

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Or her having to face this, as she would have in an earlier time.

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I was getting some stuff off her computer today, and I remembered she often kept little text windows open where she would jot down her thoughts. These two were still open, unsaved.

what on earth could i have to say?
how much should we self reflect?
 
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papaya
 
And this.

Redemption song
what kind of a country are we? “I want to be my own nation” – a character in ___ says.  My mind can’t make sense of killing to protect a nation.  It’s not my mind actually.  It’s something else. My soul? My mind can understand it.  We live in a nation and we want the protection and rights it affords us so we have to be willing to fight for that.  People want to harm us….I would want to fight for freedom.  Its not anti fighting.  But as a person, deep down, can you ever really reconcile that?  Or is that all part of being human. Having to live with the reality that your life might mean someone else’s death.  In any scenario. 

 

Uplifting Stuff:

Jess and her wonderful artist mom, Stephanie Danforth, have been going to Kenya for years, where they do a lot of work for kids via the Daraja Academy and the Simama Project. They are there right now, and so is Andrew.  He took this opportunity to expand his world and do some good. Here are some photos from the past couple of days.

From Stephanie:

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Playing sports with the kids.

 

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A little chess.

And Jess sent this earlier: a little rainbow where there has been no rain.

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It turns out that rainbows can be found in the most unlikely of places.

Update:

Right after I posted this, my niece texted me.

So crazy. I just read your post on the blog and had to share this with you. I was driving home from NH yesterday and there was a rainbow in the clouds. It wasn’t and hadn’t rained though. I tried to get a pic, but just couldn’t capture it.  ❤

JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say.

But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she pretty much kept all of that to herself.

Once, when she was about 3, I heard her in her bed talking to herself. “Always have to cough, don’t know why.”

And one day I found this little drawing:

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Like the frog in the slowly-boiling water, you get used to dealing with what you have to deal with, and it becomes the norm. I’ve been looking through old journals, and as I read through them, I kind of shudder. We always lived with held breath and a cracking heart. From the year she was 11 and spent months in the hospital, after surgery to remove part of her left lung:

I was just looking out the window and saw her clench her fists, then run up and down the yard. She’s trying to make herself better.

Last week, on Caitlin’s Boston bedside table, which was usually stuffed with toppling-over stacks of books, I was surprised to find only two items: one of Dr. Brian Weiss‘s soul/reincarnation books, and a little health journal she sporadically kept. In 2012, that year that I wrote was so great the other day, she had written:

Waiting on bloodwork and doctor’s call. Stressed. Scared. I don’t know if having another disease is something I can handle. So much time thinking about myself. Feel depleted. So much time just trying to care for myself that I have no energy left to really truly do something outside of me. Wish I could just forget about myself and throw myself into something meaningful but the mundane daily aspects of health keeps me tethered to my stupid problems.

Caitlin had cystic fibrosis, but by the end, she also had severe pulmonary hypertension, CFRD (diabetes), ocular migraines that put her at higher risk for stroke, blocked sinuses, and constant, painful total body aches that required round-the-clock doses of Tylenol. I’m sure I’m forgetting something, but the point is, all of these conditions required care. At her service in December, Andrew pointed out that every single day, Caitlin climbed a mountain. Every day involved so much more effort than any regular person can truly imagine.

This past week has been, for me, the hardest yet, the finality of her absence more fully real. It didn’t help that on Monday, I reached out to an MGH therapist who was supposedly outstanding—knew CF, transplant, ECMO, etc., someone who would understand the trauma of Caitlin’s life and last weeks without a lot of explaining by me. I waited for a reply, for a lifeline. On Tuesday, I received this email:

Thank you for your phone message. Unfortunately, I don’t have availability to see people for weekly therapy in my cystic fibrosis clinic at MGH given the limited time that I am there. Do you need to stay within your insurance network? If so, I can ask around in our department to see whether someone with experience dealing with illness and grief may have time.

We happened to be in Caitlin’s apartment  when I received that email and I was livid and hysterical and couldn’t stop sobbing all night long. All night I thought: in the morning I am going post this callous person’s name on my blog then march down to MGH and accost her, in person!

I obviously needed to unleash some anger.

I sent a restrained reply instead:

I left you a voice mail explaining that my daughter died after being on ECMO.
I am stunned by the lack of empathy in your response.

 

Then I let it go. I have to let a lot of things go. Caitlin would be the first to say so.

She was such wise counsel to so many of us. After my inward rant, in that little black health record, I also found this:

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September 12, 2012

Feel desperately hopeful now that Obama will win. Biden’s speech tonight about his grandmother and courage.

Courage. That word means it all to me.

When I feel myself flailing, grasping, panicking with pain or hurt, I get a notion in my head, always, and remember that there is courage. Courage is the answer. Because courage doesn’t negate the problem, it exists within the problem. And when you realize the answer lies in taking in the problem and living in spite of it, with full awareness of it, you feel a new option and a new sense of hope and life.

JANUARY 24–The Price We Pay

We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out:

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I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, and it was actually somewhat comforting. Also, by chance, my sister and brother-in-law were staying in Boston that night, and it was also comforting to spend time with them.

Random Thought: Barbecued Oysters

I really appreciated the notes from all of you who were grateful for the trip reports. It was  easier to grieve out there, close to that spectacular coastline and those ancient trees. Caitlin felt with us. Now, home, she feels very much absent again. We will work on that.

Our last day, Jess took us up to Point Reyes where we sat at picnic tables in the freezing cold and ate the most delicious barbecued oysters. If you’ve never had barbecued oysters,  you’ve got something to look forward to.

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Hog Island Oysters at Point Reyes

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Beautiful Jess

Random Thought: 2012

Five years ago it was 2012, and 2012 turns out to have been one of the most wonderful years of our lives. Viking was publishing Cascade. Nick and Caitlin and I took a relaxing winter trip that turned out to be one of our best. And that summer, after living alone in Paris for a little bit (a longtime dream), Caitlin met Andrew.

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Caitlin in Coral Gables, 2012

 

Yesterday, I found an old email I sent to my sister:

Caitlin really clicked with that boy. She said they talked instantly and forever, of ‘things’ and that he was very smart and kind. As she was telling me about him, she said “it’s like he was the male version of me,” and then her face went a bit white, and she said, ‘oh my god, that’s what the psychic told me. i would be the female version of this person i was going to meet.’

He felt the same. How lucky they both were.

Also, in 2012, Caitlin had been on a kind of wonder drug for a year. Kalydeco, invented by Vertex Pharmaceuticals, targets the specific genetic CF mutation that Caitlin had. Within hours of taking it for the first time in 2011, she felt better. She gained weight and had fewer lung infections. If Kalydeco had existed before her lung damage happened, it would have been as good as a cure. Although it ultimately came too late for her, she did enjoy a couple of relatively healthy, hospital-free years because of it, and enjoyed talking about her experience to a few groups, including Vertex and the Boston Business Journal. Drugs like this came about because of all the support for the Cystic Fibrosis Foundation, and we all thank you for that support.

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Caitlin interviewed by Boston Business Journal

Random Thought: Hereafter

Yesterday was the first day I spent alone in the house. Nick went back to work and kept himself busy. I managed to take a shower, but mainly I cried all morning. The news was all horrible and the day was gray and reminders of Caitlin were everywhere. There is a mountain of cards here and we are so incredibly grateful for them. I tried to read one or two but couldn’t manage any more, yet.

I finally decided to watch a movie that I love, “Hereafter.”

Hereafter came out in 2010 but didn’t do well, mainly I think because people went to it expecting a disaster movie–it opens with incredible special effects that depict the 2004 Indian Ocean tsunami. But it’s not about special effects! It’s an intelligent, engrossing, and very well-written movie that ruminates on whether there is an afterlife.

Matt Damon plays the part of a reluctant medium very very well.

After watching it again yesterday, I realized that it was written by Peter Morgan, writer of The Queen and The Crown. No wonder it’s so good, I thought.

In Pittsburgh, Caitlin and I loved to watch series-type shows after dinner. Our last show was The Crown, and we finished it right before she went into the hospital in November.

At the time, I looked up some of the actual events that took place in the show, including the Queen’s friendship with “Porchie,” and came upon this statement she made after his death:grief is the price we pay.png

She was, in turn, quoting from Dr Colin Murray Parkes, a hospice pioneer:

“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”

With this quote in mind, I want to point out that we are always going to want to talk about Caitlin, even if our voices crack and our eyes fill up. The pain of our grief was definitely worth the price of our love, and we’ll be paying for the rest of our lives. That’s okay.

With much love for all of you as well,

Maryanne