12/19, 5:30pm — Into the OR

Let’s hope they find something that’s causing these increasing lactates! This OR trip is proactive and good. Caitlin has a great medical team!

My aunt just asked a good question: Is she aware that she’s been transplanted?

The answer is YES.

She’s listening. We told her. We told her that the lungs are perfect Harry Potter lungs that are a perfect fit. Her blood oxygen saturation is 100 percent. (Before transplant, it was in the low 80s.) The pulmonary pressures on her heart have gone way down. As soon as the rest of her regains its previous good health, she’ll be able to enjoy her new ability to breathe again. What a gift, what a tremendous, generous gift.

All we know of the donor was that he/she was very healthy.

—The Team

DECEMBER 19–Another OR Visit

So Caitlin wasn’t going to make this a Hallmark Christmas miracle, no. That’s too easy, too sentimental, and Caitlin, compassionate as she is, is not one for easy sentiment.

This is tough stuff she’s going through. She’s still in critical condition.

The lactate levels continue to rise. That indicates there is dead tissue somewhere. They need to find out where. They don’t think it’s coming from the left leg but will have Vascular look at it while they are in the OR.

They are going to make a small incision in her abdomen and visibly check the liver and the bowel. Hopefully they will see something they can remove…  in any case, they will leave the incision open and covered for a few days so they can have access to the area and see what’s what. They will also open the chest covering, clean it out, and put another cover on. (Her chest is so swollen they can’t close her up yet; this is common after transplant). They will also do a bronchoscopy (clear out the lungs), as a lot of blood got down there yesterday.

This will happen in a few hours. They are basically going to move her entire “support” system into the OR, so as not to disrupt her as much as possible.

Everyone who worked on this very high-risk surgery has been in awe of Caitlin and how rugged her tiny tiger body has proven to be. But she’s in a quite hellish place right now, I won’t lie. A photo would scare you.

We need to stick with her. We knew it would be a very rough road, post-transplant, and it certainly is proving to be. But a successful outcome is the prize: Climbing hills in San Francisco with Jess, hiking in Maine with Andrew, traveling freely with her mostly companion (me) again.

I’ll send out a post  when she goes into the OR. The incision is simple, but how much time in there will depend, of course, on what they find.

–The team


OKAY! She is successfully off the heart-lung bypass machine, and transitioned back onto ECMO. This needed to happen, and happen as quickly as possible.

The dialysis will work to hopefully reduce the lactates in her liver.

Thank you to our blessed real-life angel Sinead. I woke her up in London after the surgeon dropped the frightening news on us. She tapped into Caitlin, and worked with her for fifteen minutes, told me what was going on with her body, told me what I could do myself. I was up in the chapel and when I came down the elevator, Nick, Andrew, and Jess were waiting to tell me of the success.

This is going to be a very bumpy road… we expected it and it’s here. The recovery is tough, but we are all here to help her through this.

We are still waiting in the waiting area. She is still critical. But….


DECEMBER 16–A Matter of Ethics


Many people rightly wonder why Caitlin couldn’t be transplanted at home, in our world-class medical city, Boston. The answer is disturbing, and points to a flaw in the medical system. It’s a fight she was gearing up to fight, one she plans to continue after transplant. Here is a draft of a letter she was working on in October of this year:

I grew up outside Boston, and have been a patient at Children’s since I was diagnosed at age 2 with CF, in 1985. Once an adult, I transitioned to inpatient treatment at Brigham and Womens Hospital (BWH).

In spring of 2006 I was still “too healthy” for transplant, but I began the process at BWH at my doctor’s urging. BWH was one of the hospitals who transplanted cenocepacia patients like me — along with UPMC, Cleveland Clinic, Duke, and a handful of others.  “Better to get started early” was the thinking, “so that when you get really sick, you are ready to be listed.” I began the evaluation as an an outpatient and completed a significant amount of its required tests.  I continued to remain fairly stable in my health.

Then, in 2008, an administrative assistant from BWH called me, out of the blue, as I was getting ready for work, and told me they would no longer be able to offer me a spot for transplant because of my cenocepacia.  Things spun for a minute — “No, I argued, “You already know I have cenocepacia, we’ve been over this, your program takes cepacia patients.”

There had been a change in policy, the woman said.

I wasn’t sure what to think. I was confused before I could be upset. The woman said I should have received a letter.  I hadn’t, although it did arrive in the mail, weeks later — simple and boilerplate — another baffling link in the chain of events.  Soon, almost all of the other hospitals began to deny transplant to cenocepacia patients. I grew panicky.

Eventually, I worsened and did my evaluation at UPMC. I was listed on April 24, 2014. Because I would need to reach UPMC in four hours, we set up emergency jet service (which is never a guarantee), and began to wait. When December came, my mother and I moved to Pittsburgh to “wait out the winter.”

Winter passed. May of 2015 found me sick and in the hospital. It made no sense to go home at that point, and surely I would be called soon, was the thinking. We reluctantly signed a new lease on an apartment.

A year passed.

I have now been listed at UPMC for 2 ½ years. It’s taken an incredible emotional and financial toll on my family. I own an apartment in Boston, right around the corner from the hospital, that sits empty while I wait here.

So why did all of this suddenly happen?

A study in the American Journal of Transplantation in 2008 concluded this :

Cooperation between CF treatment and LT centers will hopefully provide new insights into virulence, transmissibility and treatment regimens for this unique and challenging pathogen. More specifically, further studies to identify which specific strains of B. cenocepacia may be more virulent, the mechanisms behind the virulence in such strains and investigations to tease out what host factors might influence progression of the infection in the CF population
should be a priority. Until then, we recommend the careful screening of all CF patients for BCC and excluding from LT those harboring B. cenocepacia, regardless of susceptibility profile.

That conclusion, and recommendation, was made despite the fact that the study was based on  a very small group of people with cenocepacia – 7.  Of those 7, 3 died of Burkholderia-related complications, 2 died of other transplant complications, and 2 were …alive.  The data of these 7 individuals was taken from groupings of people who were transplanted between 1992-2002, a time span that began 16 years prior, when many programs were just beginning to offer transplants, and ended six 6 years prior to the study’s date of publication.  The group of non-burkholderia CF patients used as comparison was a study of 59 patients.  9 cultured other forms of BCC, and as mentioned before, 7 harbored cenocepacia.

Being that there are so few studies on cenocepacia and their outcomes, and even fewer at the time the article was written in 2008, the conclusions drawn cast a wide net across the transplant community.  I personally was immediately removed from the transplant list at Brigham and Women’s.  I was upset, but it would still be a couple of years before the reverberations of this decision were truly felt, when I got much sicker.  For some, they were already being felt, and for others they meant the arrow pointing towards death was now certain.

This situation is a serious matter of ethics.

The blanket exclusion of one very small group of people from almost all centers, based soley on the organism that they culture, is ethically wrong.  Not only is the data presented about cenocepacia and transplant anecdotal and outdated, but the process of eliminating one very small minority group like this on that outdated evidence is directly in contrast with the typical “case-by-case basis” methodology of evaluating patients at most centers.

Transplant centers certainly must reserve the right to evaluate and accept, or reject, transplant candidates. But it should be on a case by case basis.

Where is the logic in being pointed in the direction of certain death, because the risk of possible death is too great in the other direction? Is that what lies at the core of medicine? Balancing risk, but to a fault?

To those who say “it’s a complicated issue,” I say, “It’s not, its a simple issue, with a complicated story.” At 33, I have end-stage CF that ends with certain, early death.  There exists a potentially life-saving surgery available, but because this surgery includes a risk of death, I am being denied opportunity for it by nearly every center in the country.  When a man is drowning, does the man on shore say “I can’t save you, we could both drown?” Sometimes he does and he has to live with himself, because that person will certainly drown without help.  This is even simpler than that.  No surgeon will die if I die, no doctor or caregiver.  Is my chance at a year, or two, or five at life, worth less than someone else’s? Who gets to ‘decide’ who uses organs “to the fullest?”  I challenge you to ask anyone who has had a transplant if they’d do it all over again even if they knew they would die after only a year, and you will hear a resounding, unanimous, YES.
UPMC Pittsburgh practices real medicine. This transplant team is not in the business of cherry-picking the candidates they deem most likely to survive, in order to improve their statistics. Instead, they accept high-risk, last-resort patients like me, in an attempt to save our lives. I am grateful to my team: my compassionate pulmonologist, Joseph Pilewski, and the brilliant surgeons, Drs. D’Cunha, Shigemura, and Hayanga.

—Caitlin O’Hara

DECEMBER 16–The Thing with Feathers


“Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.” – Emily Dickinson

I believe in the power of energy and I believe in the power of love. I believe that if as many people as possible know about Caitlin and as many as possible set an intention, that the most perfect Harry Potter lungs will come this weekend. If you don’t know Caitlin, she is as kind as they come. She is the person who donates generously to every desperate cause, tips 50%, who fights for what she believes in, and is empathetic beyond belief. Because it is Christmastime, and because she desperately needs lungs, please do something for her today. Donate what you can, in her name, to a critical cause like Aleppo via Partners in Health, smile at a sad-looking stranger, leave an anonymous holiday greeting on someone’s windshield – do it in Caitlin’s spirit. She’s at UPMC Pittsburgh and, because she is O+ and 5’2”, the donor pool is very small and regionally-based. Her family is grateful that direct organ donation to Caitlin is an option. She is on life support and is in desperate need. Please spread the word via social media (Facebook, Twitter, Instagram) to as many people as possible and keep fighting, just as Caitlin would do for each and every one of us. #lungsforCaitlin



Jessica Danforth is a from-the-first-meeting, deep soul friend of Caitlin’s. They met at St. Mark’s 17 years ago and are devoted to each other. Jess has had her own breast cancer battle this past year (shared here) and flew here, after chemo on Monday, from San Francisco to be with us. She reads to Caitlin—Mary Oliver, poems, messages from all of Caitlin’s friends. She gives our buddy three-hour hand massages, plays music, talks to her, and sleeps in a family room chair bed. She is made of pure goodness and love. She is Caitlin’s bedside angel.


DECEMBER 16–The Tiger Inside

Instagram opened to this. I like a good sign.

Clearly, my silence of the past few days has indicated that it has been a time of waxing and waning health and hope. I’m not going to go into all the details but Caitlin has had a lot of complications and on Tuesday was temporarily considered “not strong enough to undergo surgery.” BUT–in the past 36 hours, she has made some steady and unexpected improvements. The incredible Penny, our ICU doc, has pulled all kinds of tricks out of her Mary Poppins bag to help her, and Caitlin’s deeply gifted intuitive healer cousin, Sinead, in London, has been working, nonstop, (even talking with Caitlin in her sleep, she’s been told), to read Caitlin, (it’s wild how accurate she is), and send healing. We all feel the prayers and energy coming from all around our buddy. Probably most importantly, deep inside, Caitlin’s inner tiger stopped resisting and fighting the help and is now calmly fighting to help herself.

Her liver and kidneys were in trouble, and her blood pressure was low. She went on dialysis on Tuesday. By yesterday, they’d cut way back on it, and her body was producing lots of urine on its own, surprising everyone.

She was put on blood pressure support to increase her blood pressure.  She’s still on blood pressure support meds, but they’ve been reduced, with no drop in pressure, and that’s a good sign. We need for that to continue.

Her liver is still in trouble, but it’s a young liver and can bounce back. Still, we need to help it improve, and that means cutting down on the medications she’s on.

Her belly was having problems and they’ve had to stop feeding for a while to give it a break.

So there’s a list of stuff to pray for. She’s very sick but there is hope. You can read some of the comments on this blog, from other transplant patients, who’ve “been there and lived to tell the tale.” I’m grateful that strangers have reached out to comfort us with their stories.

The surgeons are still considering all offers for her, but any lungs cannot be less than perfect in her case, they must be Harry Potter lungs. And she must be strong enough to withstand the surgery. So it’s a constant monitoring, and a “feel,” as her surgeon said.

I cannot thank you all enough for sending so much love and support her way. This has been a difficult emotional time, yet also overwhelmingly uplifting.

Nothing is worth more than love. Nothing.


–Maryanne, with Nick, Andrew, Jess






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 — 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.

Screen Shot 2016-12-11 at 12.51.49 PM.png

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


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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