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.
12 thoughts on “DECEMBER 16–A Matter of Ethics”
I, also was transplanted at UPMC. Best place in the world. Best surgeon Dr D’Cunha. I was sooo bad and on life support, he was the only dr. That was willing to take a chance on me . 7 other drs . said NO, that I wouldn’t make it. Dr. D’CUNHA and I proved them alll wrong..yayyy
Thank you for sharing this hopeful reply🙏🙏🙏
A message for MaryAnne – this afternoon I dedicated my hot yoga class to you. Caitlin is flooded with fabulous intentions, positive energies and good will, this class was yours 🙂
I hope you’ll be able to get back to Mystic yoga at some point, I too have a good feeling about this weekend and hope all the best for the O’Hara clan. Sincerely, Marlies
How lovely & kind of you to do for Maryanne!
I just saw Fox 25 picked up Caitlin’s story. I am reaching out to my friends and spreading the word as quickly as possible. I went to Fay with Caitlin. Never had the opportunity to know her very well but I admired her. So beautiful, smart, fun and full of life. Caitlin, her family and friends have been in my thoughts daily. I believe in Christmas miracles. Lungs are coming. I truly believe that. Stay strong. Sending so much love ❤️
Praying for your beautiful daughter. My she be covered with protection of our Heavenly Father abd I pray that she receives a new set up lungs this weekend. Hugs and prayers from a sister of a 37 year old Cf patient who lost his battle 6/21/14 and received his wings. What a beautiful gift to receive a new chance at life during Christmas.
She is such a powerful writer. Praying she gets her chance to take up this cause. ❤
My words can’t express the impact of Caitlin’s. May God Bless, stay strong and all of our prayers are with Caitlin….Mike
My daughter was evaluated at UPMC last year. They denied her transplant because of M. Abcessus. I didint get angry about their decision but the fact that they knew she was positive for NTM, had all her records and made us come for a evaluation only to deny her because of the NTM was very upsetting. We just got transplanted at Cleveland.
I’m praying for your daughter and hope that she can get the lungs soon.
Sending comforting and healing thoughts to you all. May you be blanketed with love, support and hope just as the ground here in Massachusetts is now covered in snow.
Our current traditional western medicine business model is just that – a business model, not a safe haven for the sick! When that changes we will see better care. Unfortunately changing the current status will be difficult, but not impossible! Caitlin will get her new lungs and she will make the world a better place having gone through this difficult journey. Sending prayers to that beautiful soul Caitlin!! xo
My husband was diagnosed with pulmonary fibrosis in 2014 @ 57. After all the testing ( he was a very healthy man prior to this diagnosis). He was placed on the Lung Transplant list at MGH. From December of 2014 until July of 2015 he remained positive, used oxygen supplementation, attended pulmonary rehab three times per week. In July of 2015 he was hospitalized when it was no longer safe to remain at home, he was on 18 liters of H20. With no available donors, Ed, my husband became to sick and was inter-bated, then put on ECMO for one month. He was deteriorating fast and became very ill. In late August of 2015 a donor was identified and my husband underwent the 10/12 hour surgery for his transplant. My husband was hospitalized from July 2015 and did not return home until December of 2015. it was all down hill from there. Beginning in January of 2016 my husband was hospitalized multiply times, from C-Diff two to three times, to cardiac infraction, DVTs, Stage 4 kidney disease, pneumonia, the flu, AFIB, medication reactions and allergies and the list goes on. The most frustrating part was the lack of compassion from Dr. Astor and his lung transplant team. They provided no direction or care to my husband, stated that he was fabricating his illness and when he became too sick they suggested he go into assisted living. Theiy were malicious and filed false reports or abuse by me his wife and caretaker, which was obviously unfounded and not supported.. They would requested that we see specialist at MGH that nearly existed when trying to scheduled appointments then would become angry with us that we couldn’t be seen. The care was horrendous and neglectful on their part. They hated that I as he spouse asked questions. I contacted and wrote the CEO, the President and the The Chief Nursing who is responsible for patient care where I got nowhere. A family should not have to be treated this way when they are trying to care for their loved one and do what was in his best interest. When my husband reached a year post transplant they suggested he go to another hospital. I guess when your not a success story they don’t want to take care of you. My husband past away on October 28, 2016 and I truly believe if Dr. Astor and his “team” had taken more of an interest in my husbands care and had he not waited so long he would be alive today. I could write a book on what MGH put my husband through the mismanaged care and the dictatorship. They all felt that they were or a higher power and had not respect for their patients. I have filed since with the Department of Public Health and will go from their.