Cystic Fibrosis & Organ Donation Awareness – Page 10

OCTOBER 24–Kitten Admitten

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.

screen-shot-2016-10-24-at-9-24-22-am

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.

–Maryanne

APRIL 15 –Every Day is Awareness Day Here

grassy cat sharp — Caitlin at home, summer 2014

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.

Are you a donor? I’ve been one since age 16. It takes two secs to register. You can’t take them with you but you can leave a bit of yourself behind and save a life.
http://www.organdonor.gov/becomingdonor/stateregistries.html

–Maryanne

MARCH 16–It Keeps You Running

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!

https://www.crowdrise.com/runtocurecf2016/fundraiser/marykathleenwhittemore

MARCH 4 — Floating in a Tin Can

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 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.

—Maryanne

JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad — In 2013: Looking Good. Feeling Bad

In this column 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.

Read the entirety of her thoughts here: The Unthinkable Transplant

-Maryanne

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JUNE 29–The Update

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.

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.

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. — 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.

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.

–Maryanne

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APRIL 24–“The timeless, repetitive waiting.”

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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MARCH 6–Year to Year

I created this blog exactly one year ago this afternoon, which I realized when WordPress sent me a renewal bill. We were in Pittsburgh to complete the transplant evaluation. Caitlin had been sick all winter. Everything had changed, and we were preparing ourselves for even more change. I never would have really thought that a year later, we would still be waiting. But that is the reality of organ transplantation.

We like to keep the blog upbeat, so I don’t go into any real detail about what Caitlin goes through. In my last post, I referred to a difficult two-week stretch as some “not-great days.” Caitlin intensely dislikes drama of any kind, and does not like to call attention to her problems. But as we mark a year of this surreal time that is waiting for organ transplant, I’d like to toast my noble little bird.

She has been remarkably stoic her entire life. And I’ve been full of admiration, this past year, to see just how well she has coped with the kinds of issues we hope never to watch our children deal with.

I saw this quote by Maya Angelou the other day; it resonated with me:

Having courage does not mean that we are unafraid.

Here’s to Caitlin.

–Maryanne

FEBRUARY 24–The Long Winter

“Any news yet?” No, we are still playing the waiting game. Caitlin’s been on the list 10 months today.* April 24-February 24! And it feels longer, because it technically has been longer. A year ago today, February 24, we were getting ready for her to be flown from The Brigham to Pittsburgh, and I wrote in my diary: The trip to Pittsburgh begins.
So much was unknown then, and remains unknown.

The last few weeks were up and down because Caitlin caught a cold after months of stability. The cold passed, but she’s been dealing with the inevitable after-effects. There have been some not-so-great days, but right now, things are okay.

In that vein, here is a report on WHAT IS GOOD:

Puzzles! We are HOOKED on Liberty Puzzles, thanks to our dear friends, the Danforths, who sent us our first. Liberty Puzzles are beautiful, wooden, puzzles laser-cut into fantastical shapes.

Henry! Yesterday Caitlin said, “Aren’t you happy he’s here? It’s like a great TV show that’s always on.”

Pittsburgh! I keep saying it, and it’s true: “Things could be a lot worse.” This is a nice city, with a lot going on. I happened to stumble upon the opening of the above living art installation the other day. And on Sunday, Nick and I went on a “cello” hike, which consisted of a walk around the city that included tours of cultural venues, and ended with a private cello performance at the Capital Grille. After that, we had a glass of wine at a favorite little place. I usually have no problem playing it cool when I see a celeb, and there have been a lot around here because they are filming a movie, but it was hard to contain myself, I must admit, when right across from us, tucked into a corner, was Diane Keaton. She is just one cool cat. She’s one of Caitlin’s absolute favorites, and I wish Caitlin could have seen her.

Friends & Family! It’s been great to have people here. My sister and niece were here, then Diane & Katie and baby Diego. People send notes and Florida grapefruits, and crafts and cookies and flowers, and prayers and overall kindness that we are overwhelmingly grateful for.

–Maryanne

*It’s not uncommon to have to wait so long. Organ donations are not as plentiful as they could be, so please, if you agree that you’d like an organ if you desperately needed one, go on and register with the organ bank, if you haven’t already done so: http://www.organdonor.gov/index.html

JANUARY 31–Small Potatoes in the World of Miracles

Caitlin here,

As you may know, I’ve been gracing your Facebook news feeds here and there with posts about my efforts to save the Prouty Garden at Boston Children’s Hospital.

Tom Farragher wrote a great column in today’s Boston Globe, bringing more, much-needed public awareness to the issue. It’s a little awkward to see my name in dramatic print like this, but it;s an important issue. Many who care about the Prouty Garden are fighting illness and challenges that do not abate; they may not have the time or energy to speak up. This is not a situation that will simply resolve because people care—hospital boards are powerful entities. I urge people to please comment on the Globe article, and email SaveProuty@gmail.com to get involved.

To the thousands of doctors and patients who have gained sustenance from this natural garden, with its tall trees, birds, rabbits, and grassy lawn, this is akin to building over the Public Garden or Boston Common and replacing it with “parklets” all over the city—can you imagine? Except now imagine further, that those parklets are not just enjoyable spots, where you take a little stroll or sit and read a book, but places where you must spend some of your most vital life moments—relearning how to live, or wondering if you won’t.

Since this is my blog I will be more candid here. Look—we are talking about a building. Construction, architecture. Here is a hospital that claims to and does perform miracles on the daily– making the impossible happen. I am not lacking in understanding of the need for clinical advances — I am waiting for a procedure that, each day I think about, “How will it be possible that they will put someone else’s organs into my body?” I am in awe of, and grateful, for the miracle of science that I am waiting for. Perhaps because I know what feats are possible in a seemingly impossible situation like mine, I know that finding another space for this clinical building is small potatoes in the world of miracles. It comes down to a desire by the board, and money. Previous boards were surely tempted by the space of the garden, in their plans for expansion over the years, and they resisted.

–Caitlin