Category Archives: direct donation

NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.

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Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

View story at Medium.com

 

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

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“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

–Jess

 

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.

–Maryanne

DECEMBER 16–The Tiger Inside

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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.

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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!

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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.

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

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–Maryanne, with Nick and Andrew

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