Tag Archives: UPMC

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

MARCH 4 — Floating in a Tin Can

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March 4, 2014   Boston

I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.

medjet

The tiny med-jet.

The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”

They stuffed me into a pop-up seat behind the pilot and we took off.

It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.

I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.

Two years, March to March:

alendar

So many days. Each day thinking, Maybe today. Have to be ready.

Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.

Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.

The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”

Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”

I laughed and said of course not.  She didn’t really like the exhibit — not her style. But it was something to do.

The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.

Shall we do it? Of course.

“This is one that goes through my mind a lot,” she said, writing.

sb

(Samuel Beckett.)

UPDATE:

Interesting coincidence we discovered after I published this post:

So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.

When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.

 

—Maryanne

 

 

JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad

In 2013: Looking Good. Feeling Bad

In this column for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.

It terrified me, too.

But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.

Read the entirety of her thoughts here: The Unthinkable Transplant

rainbow

-Maryanne

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