Caitlin started to feel abnormally horrible on Saturday and began to rapidly deteriorate. Her team couldn’t get her plummeting sodium or elevated CO2 under control. She knew something was seriously wrong with her body, at the same time that she was increasingly out of it.
Last night, around 8pm, they moved her to the MICU to hopefully stabilize her. At midnight, one of the transplant surgeons told us they needed to quickly put her on ECMO, which is a form of life support that circulates the blood so as to oxygenate it and remove the high CO2 levels that are putting pressure on her heart.
The procedure calls for large cannulas that are inserted into the groin and neck. Her heart went into SVT 3 times and she had to be shocked 5 times. The surgeon told us she wouldn’t remember it, but unfortunately she remembers every bit of it.
At 3am we were able to see her in the CTICU and we are still here. She’s fully conscious, is mostly immobile, but able to talk, with effort, through her oxygen mask. She is still fiercely advocating for herself and telling us we need to watch everything, question everything, for her.
She just asked me to please do a blog post, said, “Need prayers.”
She’s at the top of the list here now. Her score is now in the 90s, and that also makes her a national priority.
Fortunately, we know other people who’ve been through this and lived to tell the tale, so we remain positive. Early on during this admission, Caitlin said she needed “ferocious positivity” from everyone. There’s actually a young woman from MA here, who was on ECMO and was transplanted in early November and who is doing well. And here’s an incredible one: http://www.cfcornerman.com. Thank God for these ferociously positive stories.
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The main questions I’m fielding: Is Caitlin feeling better? Is Caitlin still in the hospital or is she home? Caitlin is not feeling better, and is not going to be better until after transplant. Her pulmonary hypertension is severe and contributing to her high oxygen needs. In addition to her nasal cannula, she wears a mask that simultaneously delivers extra, high-flow oxygen. It’s hard for her to do anything, as she gets breathless and quickly loses oxygen saturation in her blood. She needs a lot of help to do basic things, to move from the bed to the chair, or to shower—a shower is a half-hour, 2-person effort. And a wheelchair ride off the floor, which she and I did alone and fairly easily 2 weeks ago, had to be done very slowly yesterday, with four oxygen tanks and her nurse accompanying us.
At this point, she will remain in the hospital until transplant.
I didn’t post about last week’s offer of lungs until after it was a no-go, because we knew from the start that there was a good chance that the lungs wouldn’t be viable. That turned out to be true. (Only 1 was viable, but we learned that a man in desperate need of 1 lung received it on Thanksgiving.)
These are the days we dreaded might happen. It hurts and alarms us to see her struggling. She is in a constant state of nausea, discomfort, and the anxiety that comes from the inability to take a deep breath. But she is in the home stretch. She is a top priority with the transplant team here and they are one of the best.
Thank you, everyone, for all the prayers you are directing her way. When we think of the network of friends and friends of friends who all care and root for her, it makes us feel connected and comforted.
Please add a prayer, too, for her eventual donor. I think about that person a lot.
–Maryanne
A text from Caitlin:
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
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So, Caitlin’s been on the transplant list exactly 2 1/2 years today. I wanted to mark that but also wanted to let everyone know that she’s been in the hospital the past few days, after experiencing a scary and unprecedented episode of respiratory distress on Friday night.
The past few months have been getting increasingly more difficult. She’s been needing more oxygen, having more difficulty gaining weight, and is in a lot of day to day pain and discomfort. But on Friday night, she was attempting to do something fun and normal: she and Andrew had tickets to a comedy show.
They were running late and it was rainy and windy and when she got out of the car, the wind caught her breath and she started “stacking breaths”—-she couldn’t get air, her O2 saturation started going down.. down.. down. It was all happening so quickly that it was hard for Andrew to understand that something serious and terrifying was happening. She expected to pass out and managed to say, “emergency.” Fortuitously, the show was at U Pitt, right next to the hospital, and Andrew was able to run to the ER and bring back help.
The stress on her body had caused her white blood cell count to jump, and her oxygen saturation had likely been in the 60% range (you never want to be below 88; healthy people are 99-100%). She was in a compromised state after the episode, and so she was admitted.
Anxiety and panic are real problems during the wait, brought on not by mental strain but by the actual physical discomfort—-your body starts to have anxiety reactions. The hospital is not a bad place to be when you’re like this and so she’s there, getting treatments and tests and some rest.
I was lucky that both Nick and Andrew happened to be here. Caitlin and I had been alone for a few weeks, and it’s so much less stressful when they are around. Nick is so great, doing all he can to take care of us, and Andrew has been such a wonderful partner to Caitlin these past years. They are very devoted to each other.
So. 2 1/2 years! Yikes. This morning Facebook reminded me that a year ago, I’d been overwhelmed by the fact that we had been waiting 1 1/2 years. I still can’t quite believe it. It’s been a life-changing time, for sure. But one with a surprising number of blessings.
The questions I get:
Q: Does the hospital give you any indication of when..?
A: No. The odds are the same on any given day. Fate decides when organs that match Caitlin’s chest size and blood type become available, BUT her “score” (which says how sick, how “in need” she is) has to be higher than any other person on the waiting list who has her chest size and blood type. The list fluctuates all the time. Caitlin has a competitive score, but if her score were high enough to be at the top of the list, she would be very sick, indeed, and we hope to avoid that.
Q: How is she holding up?
A: She’s been remarkably resilient, but it’s getting harder, no question.
Q: Is there anything I can do?
A: Just keep letting her know you’re thinking of her. She doesn’t need things, but knowing people are out there rooting for her is always a boost. It’s harder for her to reply these days, but she’s grateful for the love.
Q: Your lives must be so serious and sad?
A: Haha. This isn’t really a question I hear with words, but I do see it in people’s faces, hear it in their voices. NO! We laugh a LOT. We enjoy our days as best we can. We remember that we are still better off than most of the citizens of this world. Humor keeps us going, and that’s why it’s a shame she had to miss the comedy show.
I made Caitlin pose for this photo (almost 2 years ago) — but I like it and she said “ok” to putting it up to raise organ donor awareness during organ donor awareness month. Caitlin has been on the waiting list since APRIL 24, 2014. Two years! And she’s not alone in her wait. There’s a rally going on in downtown Pittsburgh as I write, informing passersby that 138,000 people are currently waiting for organs in the USA.
I have never known Katie, my oldest friend and near-sister, to be a runner, so when she started running more and more last fall, I just sort of quietly observed, impressed, and didn’t really say much. I know sometimes it can feel like a jinx, to talk too much about a new resolution or interest, and how determined you are. I figured she’d explain it to me at some point.
Gradually she was running more and more. She even ran a 10k on New Year’s Day morning — alone. Her running buddy, a woman in her neighborhood, was sick, but Kate had set her mind to do it, so she went off, driving herself, and did the race and sent me a picture from the end that made my eyes sting.
We have always joked that Katie greets the yearly turnover with the words “It’s a New Year!” — up and awake brightly and sprightly before everyone else, even when we were younger, and everyone was hungover, groaning. Even then Katie had likely fallen asleep before midnight, reading. Mentally preparing for what lay ahead, I thought.
We have always been different that way. Katie loves to plan ahead, down to the very last detail. She likes to imagine the future the way people like me imagine the past…the little details. What clothes will we be wearing, what dinners will we cook? What rugs will adorn our houses 10 years from now? You know, things everyone needs to know NOW. It’s extreme. I’m no better — a pathological non-planner, the other extreme. With an illness, sometimes you stop making plans to avoid disappointment. But when you wake up in the morning and can’t commit to what you’re going to do that day, living in the moment can become paralyzing. Katie and I make a good team because we can meet somewhere in the middle — I can try to pull her back into enjoying the moment, and she can probe me to figure out, what do I really want for the future?
Katie visited me here in Pittsburgh shortly after that 10k, and so we got to talk about the running thing, finally. And I learned something that surprised me. Apparently, she’d always dreaded the New Year… “It’s a New Year!” was an effort to feel good when she didn’t actually feel good. She’s finally realized that for her, the new year starts in September. I think a lot of people can relate to this —I know I can, and it was like a revelation! Because of school, of course. August is slow and swampy and then September is crispy, chillier, brighter. You feel like you want to buy pencils and notebooks and start taking notes! Yes, we’ve been doing it all wrong. She realized that to start on January 1, to try to pick yourself up from an already low point of holiday exhaustion, partying, e-commerce, was like signing up to lose. Why not SET a goal for January 1, so that ON January 1 you are achieving something ? Something that you begin in September, when it feels like the right time to do something like buy new sneakers and hit the pavement, or fill out applications, or start saving.
So that’s what she did. And though the 10k was a challenge on Jan 1, it was more like an achievement. How much better to start 2016 off having already completed a goal, rather than trudging through the first day of your journey towards one.
I loved this point of view. This mentality flip was right up my alley. She told it to me while she was giving me a leg massage — my legs ache terribly and she is better than a certified masseuse. She told me about running and thinking of me and repeating a thought in her head about me to keep her going. She said she knew it was cheesy, but it made us both cry anyway. I think there’s nothing more inspiring than seeing someone actively make a change in themselves, quietly and sincerely. I thought how cool it was that I could inspire her to run, but that little did she know, this running of hers would inspire me. I have been worried about after transplant — I’ve never been someone who likes to exercise because it requires routine, something I struggle with. Yet I know that finding a rigorous exercise routine, and sticking to it, will be vital to keeping my new lungs healthy. I’ve secretly worried that I will hate it so much, how will I ever power through? Hearing her explain how she finally did, was so so helpful. It made me feel like if she could do it, I could do it when the time came.
Katie’s next goal is running a half-marathon, in Pittsburgh, for Cystic Fibrosis! It’s in less than 2 months, I am so excited and proud of her, and lucky, really lucky, to have her in my life. I feel like we are always learning from each other, and this year I am going to cast off my hatred of New Year’s Day, and no matter where I am in September, whether its Pittsburgh or Boston, sharpen a pencil, and set a goal.
—Caitlin
Please follow the link below to donate to her fundraising efforts for CF. A kid born today with Cystic Fibrosis is born into a different world of medicine than I was, and the treatment options becoming available right now are making headlines. This is a direct result of donations used to fund years of research, so every bit counts. Thank you!
I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.
The tiny med-jet.
The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”
They stuffed me into a pop-up seat behind the pilot and we took off.
It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.
I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.
Two years, March to March:
So many days. Each day thinking, Maybe today. Have to be ready.
Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.
Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.
The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”
Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”
I laughed and said of course not. She didn’t really like the exhibit — not her style. But it was something to do.
The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.
Shall we do it? Of course.
“This is one that goes through my mind a lot,” she said, writing.
(Samuel Beckett.)
UPDATE:
Interesting coincidence we discovered after I published this post:
So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.
When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.
I’ve been trying to write an update, with great difficulty. A lot has changed; nothing has changed—still waiting—and all the national emotion of the past week left me feeling oddly subdued, not ready to talk about our own issues. But here we go–
One crappy new thing has afflicted Caitlin. She has been unusually hoarse since having a virus in February, and has lost some of her range in her voice. Although she’s experienced laryngitis all her life following colds, she knew this was something different. She visited a voice specialist last week and found out what she suspected: that one of her vocal folds is paralyzed. Both folds (or chords) must meet to properly produce sound or to effectively cough; when one isn’t moving, this can’t happen. There are temporary fixes (injections similar to getting cortisone shots) which she might undergo before transplant for some relief, (but probably not, since she tries to avoid unnecessary procedures). She will have to have the injection soon after transplant anyway — the vocal chords need to be working properly to protect the new lungs — and eventually will have to have the minor but permanent surgery of having the vocal chord enhanced by a permanent procedure. She sounds like she has laryngitis, and she has to speak in a higher register than normal, making it difficult for her to be heard, talk on the phone, etc. Overall, it’s frustrating. The permanent surgery won’t happen till months after transplant, so … that’s another thing our Kitten didn’t need, but which she is dealing with with her usual grace.
Her singing career, now stalled.
The happier news is: we’ve moved! The move has been of tremendous benefit for me and my mental health, and Caitlin really loves the fact that she has more freedom, comfort, and privacy. We’ve a little balcony, and my sister and I fixed it up with a tree and plants, first thing. That little balcony is our summer vacation this year! And not a bad vacation. Pittsburgh is famous for being fireworks-crazy, and it’s home to the famous Zambelli Fireworks. We could always hear them in the old apartment. Now we can see them. We feel very lucky.
Pittsy’s BalconyFireworks!
And I have a real built-in desk! So no more taking over the dining table. And here’s one thing I’m very very proud of: Last year, on July 1, I vowed to set a timer and write for a minimum of 30 minutes a day. I knew that no matter how busy the day was, I could always squeeze in 30 minutes. I also knew that it would be easy to *not* write during this time of waiting, and that I would end up feeling really bad about myself if I went months without producing anything. I can announce that as I approach July 1, I have not missed a single day AND I’ve managed to eke out a very ugly draft. (But ugly drafts are beautiful, as my writing buddy Barbara says.)
Henry thinks it’s ugly, too.
Many know that Caitlin has been a big part of a tireless effort to save the beloved Prouty Garden at Children’s Hospital Boston. She hated having to miss the gentle protest last week. But now, at a very late hour, the group has the opportunity to work with an environmental law firm that is enthusiastic and hopeful about saving the Garden. Caitlin spent the weekend working with her group as they decided to go for it. They got a GoFundMe account going yesterday, and the group has already made great gains in raising money for the necessary legal fees. I’ve been so proud of her these past months, watching her work so doggedly at this, even at times when she’s been at her weakest.
Donations are so welcome! I can promise you that there’s not much more of a better cause than saving this garden that pretty much saved *us* during the darkest days of her childhood.
Save the Prouty Garden!
Lastly, a small eulogy. Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and they worked their asses off to be able to realize that happy dream. They moved down from Marblehead in 2005 and launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.
It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.
Godspeed, Captain Brandi.
Captain Brandi, photo by Krista Volk
–Maryanne
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My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.
9 Lives Notes 