December 2016 – Page 4 – 9 Lives Notes

DECEMBER 11–Direct Donation Clarification

So…… we were mistaken about how donor lung allocation works. Once Caitlin went on ECMO, and her score put her available, nationwide, for lungs (as opposed to the normal regional allocation), we thought that meant that the severity of her case meant that her team could have first dibs on lungs, no matter where they were.

Caitlin’s doctor just set Nick straight on that. The UPMC team only has first dibs if the donor region surgeons can’t use the lungs. Nick said he felt like the doctor hit him with a hammer.

This shocks me. I remember, around Thanksgiving 2015, Caitlin was very stable. Another petite woman I knew, also with O+ blood, like Caitlin, was so sick that I knew she would get a transplant before Caitlin. As she did and should have. This regional allocation is wrong, and some docs are trying to change it, but it’s what we have to work with right now.

The only thing that can override it is a family’s wish to make a direct donation. 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.

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

Regardless of size and blood type though, there is always someone in desperate need of something. Please: Register as an Organ Donor

DECEMBER 11 — Light Snow, Quiet

Sorry for the lull in updates, but things are pretty quiet in the CTICU today and that’s a good thing. It’s been snowing lightly all morning. Christmas carols are playing in the lobbies. Winter has come, and we always felt she’d be transplanted in winter.

She’s had dressing changes, adjustments to the ECMO, constant monitoring, tinkering, to keep her stable.

Can I just say right now that the ICU director doc, Penny Sappington, is probably the most dedicated doctor I’ve ever known? And we’ve met a lot in Caitlin’s life. When she’s on the floor, which is thankfully almost always, I relax. Sort of.

The nurses, ECMO team, and RTs are phenomenal, too. Caitlin has most often had Erin, who is one of those absolutely perfect nurses. She’s off for a couple of days, but has already texted me to make sure we’re having an okay day.

Just typing that makes my eyes get all weepy.

All this is to say that they are taking really good care of the kitten. The kitten we’ve always known is really a tiger. 🐱🐯 She’s mostly sedated to keep her calm and keep her oxygen saturation up as high as possible, but when she’s aware, she fights, digs her nails into us, tries to shout. Her spirit is so strong.

I play the music she asked me to play for her if she was ever unconscious. And I tell her things—-mainly that her only job now is to stay calm and be strong and trust that we’re taking care of her. I read essays from the new Mary Oliver book. We constantly tell her how much we love her.

So we had almost 3 years to prepare for this, but only last Sunday, when she was clearly deteriorating, did I think to ask for her phone password, and account information for the bills she pays. I’m home for a couple of hours paying my own bills and trying to figure out hers. I opened her computer to this image: a screen shot she’d taken when she was starting to really feel sick but still managed to not look so bad, right beside the kind of lists she was constantly making to keep track of her inventories, etc.

Her life has been hard for a very very long time. Much more than she ever let on. I hope she gets this second chance, and is able, eventually to just relax and live a little.

As I am writing this, our dear friend Reggie sends these happy memory photos of the Christmas she once spent with us.

Nick’s good friends are doing their best to get a lot of awareness out there, not only for Caitlin’s critical need for lungs, but for all the critical need out there. We’re so grateful!

I’ve mentioned before how wonderful everyone here has been. Food is coming from everywhere. Every time I realize I’m starving, a delicious sandwich or salad turns up, delivered by caring friends we have made here. And our 15th floor neighbors, Ralph and Mary—–man, they are like family. Here’s Henry, quite comfortable with his pal Ralph this morning.

And for everyone doing the St. Therese novena, I opened my Twitter account this morning and this was looking at me.

–Maryanne, with Nick and Andrew

DECEMBER 10–Another No-Go

We got another offer of lungs last night, about 5pm. The surgeon seemed optimistic and confident about these—but their initial assessments are based on CT scans and blood gases, etc. They don’t really know until the UPMC team gets the lungs in their own hands. Unfortunately, the left lower lobe was completely damaged by pneumonia. Kind of a coincidence: Caitlin’s left lower lobe was the one that was irreversibly damaged when she was eleven, and which was removed in a long surgery at that time.

We’re keeping the faith. Lung transplant is tricky, and miraculous. It’s not like getting a new pair of shoes. No-go’s happen a lot, as we have certainly discovered. I’m not going to get overly confident, or post about offers, until I hear that the lungs are good to go and we’re on our way to the OR.

–Maryanne, with Nick.

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.

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