kittenupdates

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 8–Trials

Last night we received what could have been miraculous news. A good friend’s dear young cousin died suddenly. The family wanted to donate the organs. The cousin was the same size (5’3″) and blood type (O+) as Caitlin. They did what’s called a direct donation, specifying that they wanted the lungs to go to Caitlin O’Hara at UPMC.

Everything went into motion.

Transplantation involves a lengthy set of procedures that take time. The donor lungs have to be assessed several times, at the donor site, for the initial “looks good, let’s continue” sign. When the UPMC team gets the okay, two UPMC fellows fly to the donor location to do the rest of the tests.

Unlike the previous “dry run,” these lungs looked initially promising. We were fiercely hopeful.

At 7:45 am, as all pre-op activity was happening, Caitlin’s surgeon came in with the news that the donor lungs could not be used, in anyone. The donor had been a longtime heavy smoker, and even though many successful donors have been smokers, these particular lungs had some damage, as well as some pneumonias, that meant they could not be used.

We were devastated. Everything seemed to be pointing to this as positive for Caitlin’s life, and positive for the donor family, to give them some comfort.

There had been a snag, though, in the middle of the night. As I mentioned yesterday, when Caitlin was switched to the arterial ECMO, they had difficulty placing the new cannula in her left leg. They were keeping a close eye on it.

In the middle of the night, it was clearly bleeding too much. She had to go into the OR and have them switch the cannula to her left leg. She lost a lot of blood. It took hours to deal with this.

At this point, they would have gone ahead with the surgery but it would have been much riskier, and much bloodier, with her blood so thin.

Now it is absolutely essential that she get back to a stable place, so she can receive another offer. She’s being given a lot of blood products to get her blood healthy and coagulating again.

That’s what we must pray for. Continued stability. And another offer, soon.

Direct donations are a wonderful thing in a terrible time. We will be forever grateful to our good friend, for thinking about Caitlin in the midst of grief for his beloved cousin. As desperate as it sounds—-and it’s hard for us to put it into words—please keep Caitlin or another needy person in mind if you or someone you know is forced to make a difficult decision about a loved one. When Nick’s beloved brother Willie died at age 29, his organs saved 7 people.

I wish everyone could stand by Caitlin’s bedside right now and see how truly important it is to increase organ donor awareness. Just one week ago, I brought Henry into her room. We helped her take a shower. She was smiling and happy. Now she is in and out of consciousness, full of garden-hose sized cannulas, IV lines, monitors. She didn’t deserve this. She worked so hard, for over 2 1/2 years, to eat well, and exercise to her ability, to do everything possible to keep herself as healthy as possible for transplant.

Organ donor awareness is essential.

Our hearts are breaking but we continue to hope.

–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

DECEMBER 5 –In ICU, on Life Support

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.

++I’ll be posting most updates through the blog, not Facebook. follow this blog and receive the updates, click +Follow, down to the right, and enter your email address.

DECEMBER 3–Answers to ?s

fullsizerender-4 — One of Caitlin’s “creative urges.”

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

** There will be lots of updates that I won’t be posting to Facebook.

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NOVEMBER 23—Dry Run

Hey, we just had a dry run. Caitlin received an offer of lungs, but we were aware that the lungs might not be viable. After waiting since last evening, we learned they were not viable.

This kind of thing happens a lot.

We have faith that when it happens, the time will be right and the lungs perfect.

xoxo

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