Caitlin O’Hara – Page 9

DECEMBER 17–A Bits & Pieces Update

Caitlin’s holding steady, but her liver is causing problems, bilirubin rising. She’ll soon have her third bag of acetadote which they’re using to try and combat this. I also emailed Caitlin’s brilliant Boston acupuncturist, Marcy, to ask what points I could possibly work on. When I took a long Q-tip and started massaging the left ear point, Caitlin made an “ouch” face—the first physical reaction in two days.

Jess and Nick and I are working those points frequently.

Her 4am labs showed lactate levels also rising, possibly due to lack of oxygenation in the tissues and worrisome, but the late morning labs had them trending down, slightly.

Last night, a Boston TV station aired Caitlin’s story. Nick and our dear friend Laura Kelly did a great job. Thanks to Jess for getting the pictures to the reporters who worked on the story and were so very compassionate.

WordPress seems to be having some embedding problems, so click here to view the story if it doesn’t show up as embedded:

http://www.fox25boston.com/news/family-hoping-for-a-miracle-as-daughter-awaits-double-lung-transplant/476653172

This is just a screenshot of the clip, not a link:

–Maryanne

DECEMBER 12–CORE Feature

CORE, the Center for Organ Recovery and Education, featured Caitlin’s story today. The photo is from Christmas, 2012, our last “normal” Christmas. Henry is wearing his Santa Pup hat.

DECEMBER 9–‘The Sickest Person in the United States’

Caitlin just got out of the OR again, where the head lung transplant surgeon here at UPMC Pittsburgh, Dr. John D’Cunha, inserted a trach. It gets the breathing tube out of her mouth, makes her a lot more comfortable, and helps her oxygen saturation.

He came in to tell us that all had gone well and that she was already in better overall condition because of it. He said, ‘I’ll feel a lot better when this one’s transplanted, though.’

Nick asked, ‘Anything?’

‘No,’ he said. We both felt that awful desperation that is forced to mix with patience. But the doctor went on, ‘But I have a good feeling about this weekend.’

And hope came back.

‘She’s the sickest person in the United States,’ he said. ‘She’s the sickest person who needs a lung transplant in the United States. You can quote me.’

Yesterday was my darkest day. But she pulled through and let me tell you that I can feel the outpouring of love and caring coming at us from everywhere. It’s palpable. While I was helping her relax before the trip to the OR, I put my hand on her chest. The energy coming through was like a magnet.

Thank you.

We are grateful to anyone out there who would consider the gift of a direct donation of life during a time of grief, as Nick’s family did when his brother, at age 29, died suddenly of a brain aneurysm.

Caitlin O’Hara is 5′ 2 with a blood type of O+ and is on life support at UPMC, Pittsburgh.

–Maryanne, with Nick

DECEMBER 9 –Gifts

First of all, I want to say thank you thank you thank you to all the notes, messages, texts, calls, gifts, food—–all the LOVE we are receiving. The support is tremendous and allows us to keep vigil by Caitlin’s bedside, and I know she feels it.

They can’t keep her too sedated because it suppresses her blood pressure too much, but it really is best when she isn’t awake because she gets very agitated, and her sats (O2 saturation in the blood) go down. She’s very aware of what’s going on, and panicky at the knowledge that she’s lost control.

The person who has turned out to be best with her is Nick. He seems to know the right things to do and say. She’d been pointing at her stomach area as if something was wrong, trying to shout (she can’t make any noise with the breathing tube in), and he realized she was desperately asking if she had lungs yet.

He calms her, and reminds her that we are keeping her stable so that she will get lungs, and that he made a promise to advocate for her and he is doing that.

Questions?

We got a lot of questions yesterday about the direct donation effort that our friend organized. People wanted to know more about it.

How Organ Donation Works

Organ donation is strictly regulated and highly ethical. When organs become available, lungs are not allocated according to need but to location. (This needs to change). For example, someone with a score of 50 in NC might get NC lungs that COULD get to Pitt in time for someone with a higher, more needy score of, say, 65.

When someone goes on life support and has a very high score–90+, like Caitlin has now, you “go nationwide”—i.e., you get first dibs on lungs that can be viably flown to you.

Yet still we wait. And for those who don’t know why, in our case, it’s because Caitlin is so petite. A small chest size can only receive small lungs. And because lungs don’t fully develop until about age 17, there’s a much smaller pool of suitable donors.

Directed Donation

When a family wants to donate a loved ones organs, they have the power to designate that the organs go to a specific person, despite location or score. (Naturally, the organs need to be viable and a match to the recipient.) This is a wonderful thing, and is what happened yesterday. These generous people, in their own grief, knew of our situation and wanted to help. Because Caitlin was the same size and blood type as the donor, it could have worked if the donor’s lungs had been healthy enough.

Caitlin O’Hara is 5′ 2 and has a blood type of O+ and is on life support at UPMC, Pittsburgh.

We are grateful to anyone out there who would consider the gift of life during a time of grief, as Nick’s family did when his brother, at age 29, died suddenly of a brain aneurysm.

Regardless of size and blood type though, there is always someone in desperate need of something. Please register to be an organ donor. Contrary to a few myths based in fear and ignorance, organ donation allocation is one of the most regulated and ethical practices in the country.

Register as an Organ Donor

–Maryanne

DECEMBER 9–Currently Stable

Yesterday I wrote, “Now it is absolutely essential that she get back to a stable place, so she can receive another offer.”

It’s early morning on Friday as I write this, and I am happy to report that with the help of her fantastic team here, she did reach a tentatively stable place, finally, yesterday, and sustained it through her first uninterrupted night’s sleep since last Thursday, a full week ago.

I’m praying that today brings continued stability and an offer of lungs.

Life support machines are miraculous, but they’re not perfect, and there is a fine balance at play. Various factors–oxygenation, flow rates, coagulation, etc., are constantly monitored and fine-tuned, but it’s not possible to duplicate the miracle that is the human body’s maintenance of health, especially when one major organ has failed and another has been harmed by the other’s failure ( Caitlin’s heart).

–Maryanne, with Nick

DECEMBER 7–Second Hearts

Last night, Caitlin was stable but at 4am we woke to the news that her left leg, site of the new arterial cannula, was swollen. They couldn’t detect any pulses in the foot. Her leg would soon be in danger if they didn’t act. At 5am she went back into the OR to receive a fasciotomy–they would make cuts to the fascia on either side of her calf to release the pressure.

It was successful, but two hours later, they weren’t detecting pulses again and they had to do an adjustment. They’ve been checking the leg every 30 minutes. So far, so good.

She’s mostly sedated, but sometimes she swims up and when she does, she gets agitated. It’s clear that she’s alert. She pointed to the breathing tube in her mouth. Then made the writing motion. We gave her the white board and she clearly wrote, Transplanted?

It broke my heart to say no, not yet.

(They tell her what they are doing before each procedure, but of course, with the anesthesia, she forgets.)

She began to write more, faster and faster. It was hard to make out the words, but we saw a couple of angry ones: “mistake, fucked-up.” Her oxygen saturation levels started to go down with her agitation so we had to take the white board away. She’s been asleep since.

Here’s a thing that gave me some chills, though. When they first wheeled her to the OR to do the fasciotomy on her calf, I decorated her ICU area a bit. I hung some Christmas lights above the bed area.

I hung personal photos on the wall.

Jess, above, on the left, is one of Caitlin’s most beloved friends. They share a close, close bond. That “I Love You” card is from her. Inside is the kind of letter you save forever.

Jess recently went through a year of dealing with a complicated case of breast cancer. (www.kenyahandlethis.com) Right now, she is in India, on a long-planned trip. She wasn’t going to go, but Caitlin said, “You got through your cancer, and now you’re free. You can travel. Go!” Jess decided to go but said that she would carry Caitlin with her. She’s been texting me the entire time she is there. She’s been wearing a bindi (red dot) on her third eye, for Caitlin.

When I opened my Whatsapp to send the above photo to Jess, I saw that a couple of hours earlier, Jess had sent me this text.

I did.

—-Maryanne, with Nick

DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.

Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.

But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.

She’s always been her own advocate, but she pulled no punches. When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.” To the attending ICU doc who was part of the ECMO procedure: “I like you. You’re good.” To the annoying resident who started to examine her: “You just touched your hair, change your glove.” To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”

But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.

Sleep deprivation on top of trauma. What a combination.

We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.

We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.

A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”

And that seemed to get through to her.

Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.

I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.

The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around ! 3 1/2 weeks after this same trauma, after transplant. I felt like I was seeing an angel.

–Maryanne

NOVEMBER 20—Any Colour You Like

You can’t always get what you want. Blah blah blah. Deep thoughts and Pink Floyd. There is no dark side of the moon really matter of fact it’s all dark.

I’m not the first person to be sick and I won’t be the last, but here we are. Update needed.

Free association is about the only thing I have a mind to do right now and so I’ll try to pull it together into something comprehensible.

If you’ve ever been in a major hospital recently there’s this channel called C.A.R.E. that just shows pictures of nature while music plays. Apparently there’s scientific evidence that just looking at a picture of a “vista” can relax you. Sometimes I lie there and watch that channel and think about the word “teeming” because that’s all that keeps popping into my head. This planet is surrounded by rocky and fiery and gas-laden planets and yet ours is teeming TEEMING — with colors and creatures and millions of upright humans communicating. If you think about that for long enough and stare long enough into the bubbling rapid or the alpine peak on the screen you can get to that state of wonder for a second …and be like …pretty ok with everything.

Are you in control?

This is a question my dad often poses to me, and Andrew, during trying hospital times. Perhaps my mother gets it too, though I suspect not. It’s his way, I think, of assuring himself and us that we are in control of things when he’s not around. He likes to be in control. I like to be in control. I am in control as much as anyone can possibly be in my situation. Sometimes too much. I can’t control the big event, the most important thing; no one can. Control is the word of the day, the year – for me – and the country it seems too. Control is elusive. Dangerous. People freak out when they lose it.

Tolstoy had an existential crisis where he couldn’t figure out how to have faith…and decided the only logical thing he could do was to kill himself – He spiraled out of control… he couldn’t think himself out of the problem of living, the meaninglessness of life, and the uncertainty of faith. He thought that if life had no meaning, which his reasonable mind believed because he could not prove the opposite, then the brave thing to do would be to end it. But he did not want to kill himself at all. He finally found his kernel of faith exactly right in front of him. His desire not to die, to keep on living despite the fact that he KNEW he was going to die, was a kind of miraculous leap of faith that we all do every day when we wake up. He figured the fact that faith even exists at all makes it a truth in and of itself. And he went on. (you can read this in his “A confession”).

So the basic details of my situation are things I know people want to know … I’m so grateful I have so many people that care for me and my family, so here they are. I went into the hospital last Wednesday because I’d reached a new low of shortness of breath, due in part obviously to my lungs but also to my pulmonary hypertension which is more severe now. My increased oxygen needs have now boosted my score way up to 70. It was 47/48 for the past 2.5 years. I cried with relief that there had been a shift. Just days and weeks before had been, as yet, my lowest point. For the sake of transparency and for anyone reading this who might be sick too and think a lot of people make it look easy – trust me – we all fake it. Here’s what low looks like– I was sitting in the bathtub while my mom washed my hair. On 10 liters of oxygen with a rescue tank next to me to supplement. The day before I went into the hospital I couldn’t even do that. Physical anxiety attacks everyday. Extreme body aches. It’s hard to pray for yourself. Or ask for things for yourself. But that day I screamed in my mind to whoever was listening to please help me out because I couldn’t find my little ball of fiery strength anymore …and I can always find it.

Yet just last Sunday– I took this picture. Three of my most dearest buddies -Jacqui, Kenley, and Allison – arranged for my awesome Boston hair stylist, Alex, to fly down and completely change my hair. It had become a huge tangled yellow mess that I didn’t have the energy to even comb, never mind color or cut. She came to the apartment and I cut 10 inches off and went closer to my natural color. It was so perfect and such perfect timing – because now I can have dirty hospital hair and it looks like a chic conscious fashion choice with my ripped tees. My point is – I don’t look like someone sobbing in the bathtub gasping for air in this picture – but I am. Everyone struggles beyond their photos. But the world is meant to be hard and difficult and beautiful. Maybe it’s easy to say this from where I sit – I am one lucky duck – I have a great family and great care a stylist who fucking flies in. I still suffer and it still sucks. But there is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy. The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

“There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

—Caitlin

http://www.space.com/33797-total-solar-eclipse-2017-guide.html

SEPTEMBER 12–Thank You

August 14, 2016. Caitlin and Andrew at Singing Beach, Manchester, MA

How lucky. We got to go home for six glorious weeks. It was harder to be there, in many ways (logistics-wise), but totally worth it. Restorative. Caitlin got her wish to walk on the beach, and reports that although she is smiling in the picture, she’s also crying with happiness.

With hurricane season at our heels, and flu season approaching, we returned to Pittsburgh. We are lucky here. Our apartment is very easy for Caitlin to navigate. It’s comfortable and lovely, and we’ve got the kindest neighbors, plus other new-found friends in this great city.

Anyone who knows Caitlin knows that she is the kind of person who answers her texts and emails, who always hand-writes “Thank You” cards. But she’s been struggling a bit lately, and was in the hospital for the past week, starting a course of IV meds and dealing with some other medical issues. She came home yesterday to finish the IV meds and to try and recuperate in a way that’s difficult in the hospital.

She just wants everyone to know how much she appreciates the care and concern and the prayers and good thoughts and texts and messages. It’s just sometimes hard to respond these days.

–Maryanne

JUNE 19–The Menu

Yesterday my dad sent my mom and me a photo of a little menu he had drawn up: “How to entertain yourself when your wife is in Pittsburgh.” He had gone to the Ashland farmer’s market that morning — where he is a regular, making the rounds — after returning the previous night from the Vineyard, with fresh fish caught by his buddy there. The menu had smiley faces at the end of certain options. For Starters there were “Cotuit Oysters — Just Grilled :)”, Mains came with a choice of greens which included the option of “Snap Peas — as is. :)” There was Rosé from Provence to drink and “Trio of homemade cheeses by French lady from farmer’s market Ashland” as a finishing course. (He doesn’t like sweets.)

This menu ripped my heart out of my chest. I’m an easy cry — but the ‘sad dad’ phenomenon has always made me cry. “Sad dad” is not about dad being sad…it’s about a dad, any dad, being sweet, vulnerable, nice, cute, making an earnest effort. I suppose anyone, anywhere making an “earnest effort” is enough to bring me to tears. Smiley faces, tryers for happiness in the face of difficulty. It all just gets me. The first time I became aware of the emotional power of ‘sad dad’ was when I was about 10, not quite a teen but no longer a true child, and my father had secretly, without telling my mom, ordered a live Care Bear to show up at my birthday party. I was way too old for this, and when the Care Bear showed up I felt for the first time what it was to be embarrassed not only for yourself but for someone else, and wanting to protect them from feeling bad. That combination of feelings implodes inside your stomach and turns into “sad dad.” I shared this feeling with my friend Katie, who of course, as with so many things, understood completely. Over the years our moms shared in our talking about the sad dad thing and we’d send pictures or share stories. It would always be sweet and small moments — a t-shirt or a gift, a big smile and a wave. They understood it with their fathers too, and other people could be sad dads, on tv or in movies, people we didn’t know. Eventually, in Katie’s case, she had a child and experienced sad dad double-time – sad husband, sad grandpa. Even a not-so-great-dad can elicit the feeling, so long as there is a painful moment of earnest trying, even if it fails. The complicated nature of all parental relationships — the drive we have to connect, protect, forgive, we are all vulnerable to that. The resulting feeling on our parts ends up being one of wanting to hug them and cry….and of course they are always baffled. It seems like pity, I am sure. No one wants to be labeled ‘sad’ something. I have seen Katie, or my mom or dad or Andrew look at my small frame (which doesn’t seem small to me), squeeze me and say, “Oh Kitten” and I think, “What? Don’t oh Kitten me, I’m doing just fine” … No one wants to be the painful one, tugging at people’s heartstrings. But we are, and thank goodness for that, because just as everyone wants to feel loved and protected, I think they also want to do the same for someone else.

My dad has spent his life providing for me, and subsequently protecting me. At 32, I am not married yet or having kids, but waiting for a lung transplant and still dependent on my parents. I am like the family doctor around here, watching their diets and advising them on prescriptions, checking moles, doing all the worrying. Maybe it is the one way I can protect them all, until I can stand on my own and become independent. Maybe that’s where sad dad really comes from: a need to protect. I love him so much, and I suppose the things we love we want to protect, even in situations when we are not in the role of protector. My dad and I have a great time together; there are certain specific emotional moments where, despite my closeness with my mom, I find myself reaching out desperately to my dad. I am not even sure if he knows it. Perhaps they are why we chose each other in this life. We clash too, and it has made us have to try harder to achieve the friendship we now enjoy. We are a lot alike, and I think two people who are so alike do best if one is not so dependent on the other.

My dad is complicated––unafraid to change. My mom once pointed out that if he sees something he doesn’t like in himself, he will and can change it…which is pretty rare. It is true. I like to think I have inherited that characteristic. My dad always makes everything look beautiful – even if it’s just a snack of cheese and crackers, or rocks arranged on a beach, or items on a table while we’re waiting for dinner. I did not inherit that as much. He is an artist at heart who sees a unique way of combining things in everything he looks at. Lately he has been sending me cards with birds on them. My grandfather, his dad, whom they called “Gigli” (after the famous Italian tenor) because of his lovely singing voice, was a milkman who kept birds. I love birds too, like my grandfather. My dad and I seek common ground. We keep up our earnest effort, because we love each other, and of course, now, I have tears in my eyes.

–Caitlin

And here’s to Vito, my own sad dad. Thanks for looking out for us, from wherever you are.

–Maryanne