Healthcare Insights – Page 8

DECEMBER 12–Stable, Search for Lungs Continues

Last night, we were all so exhausted that all I could do was ask for prayers and try to close my eyes while she was in the OR. The procedures lasted 3 hours. She came out at 2am. She is as stable as she can be right now. The situation is precarious. As I write this, her surgeon came in. Are they tracking anything, I asked? He said he hasn’t had an offer in 12 hours. The offers that came in most recently were too large, tall males.

Friends at home and here in Pittsburgh have been trying to spread awareness. The wonderfully compassionate NY Times Magazine writer Maggie Jones succinctly put our dilemma into words. Anyone is free to share her paragraph or this post.

Caitlin O’Hara, age 33, is on life support right now and, according to a national scoring system, considered the sickest person in the United States awaiting a lung transplant. Yet because of a controversial system, she will only be considered for lungs outside her geographical region if other doctors have already rejected lungs for their own patients. She has little time left. One other option is for “direct donation” of lungs to Caitlin O’Hara. As Caitlin’s mother said, “We are grateful to anyone out there who would consider the gift of life during a time of grief.” She’s at UPMC Pittsburgh and is O+ and 5’2” (which makes the pool of candidates even smaller). As importantly, this is a reminder to be an organ donor if you aren’t already. Register as an Organ Donor .

DECEMBER 11–Back to the OR

It’s 11pm on Sunday night, and Caitlin has had to go back to the OR. Clotting is a risk with the ECMO cannulas through which her blood flows. The system is monitored constantly and a couple of hours ago, they discovered a clot. They clamped off part of the tubing to try and extract it, but that didn’t work so she’s had to go back into the OR to replace the cannulas. They are not meant to work forever.

It’s Sunday night and we’re coming into Mercury Retrograde and I’m asking anyone who is awake and reading this to pray for a hitch-free procedure.This kid has been through enough!

–M, with N and A

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 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 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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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

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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

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