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.
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~~!
After her transplant, Caitlin will not be able to be around cats anymore. Which is sad because she loves cats so much! Today we drove far out into the country to a wonderful, no-kill humane society where we spent an hour and a half playing with the cats. Mittens, shown here, was the most painful kitty. Abandoned by its owner. HOW anyone does that is beyond me. She was so confused by her cage that we let her out 3 times to play with her. So painful to have to leave her there!! But a wonderful place, doing great work.
–Maryanne
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In thiscolumn for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.
It terrified me, too.
But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.
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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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!
–Maryanne
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Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.
I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.
We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.
–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 