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 .
9 Lives Notes 
I posted the information about Caitlin on my facebook page, and am praying hard for “just the right size ” lungs to come soon. Love from Anne
Sent from my iPhone
I’m relieved to hear she is stable after the surgery – was on pins and needles until I saw your note. I am continuously praying and hoping. Have shared your note on Facebook as public and shared in Twitter as well. Trying hard to ferociously positive for Caitlin. Xoxo
Just called our family priest Father Sodini who works at Shadyside Hospital and he is going to see if he can make a miracle happen🙏🙏🙏
Love, strength, courage and pain runs so deep and endures for the three of you. My continued thoughts and prayers for a miracle, healing and peace for you all. Bless you. Your story touches, saddens and inspires all that you reach. Thank you for sharing this blog. Will share a quote: “prayer is an upward leap of the heart, a glance towards heaven, a cry of gratitude and love which I utter from the depths of sorrow as well as from the heights of joy” St Therese Liseux. I am hoping soon for you all, it will be a very long awaited cry of gratitude for a miracle.
I’m A+ however will share on my page
I shared here in California. My son is 20!with CF and it scares me to think this day will eventually come and hopefully you will find her the lungs and we will find a cure! Prayers
Thank you, Dana. There is so much hope for younger people with minimal lung damage. Take heart. ❤
Waiting and hoping. I’ve posted Maggie Jones’s info on social media, and have asked friends to do the same. Trying to help spread the word as quickly as possible. So many people are carrying Caitlin in their hearts right now . . .
Sharing and praying for Cailtin! She was such a great kid and from what I’ve read a fabulous woman now. Sending lots of love and hope to all of you. ❤️
A friend’s son was on the transplant list in Boston and the Cleveland Clinic for years. He did some research and found out that Duke transplants people much more quickly. Went down there and was transplanted almost immediately. I’m not sure if this information is helpful to you or not but wanted to let you know just in case it is. I don’t know you or your family but saw this and want you to know that I am sending prayers to you and your family.
Sending good thoughts and lots of prayer for Caitlin.
There is no place like home, I am a little sad to think about this dear family out of town, away from home. I share this just to set the record straight about the current state of things in Boston and also just as an FYI for the local resources in Boston. Things have changed A LOT in Boston, specifically at the MGH lung transplant program, all good. In the last couple of months, the lung transplant program has had their routine review by CMS (aka The Feds) and by UNOS (organ donation network). These surveys look at everything from the work-up ordered to the chart documentation, and include an analysis of outcomes or how well the patients do. The MGH lung transplant program received the FIRST EVER 100% from CMS – meaning everything was as it should be and no other center, for any organ, in the US has ever had that. Further, the UNOS examination found a 100% for clinical and 99% for administrative areas – confirming the excellence found by CMS. On top of this, because of advances in technology the MGH program has dramatically increased the number of transplants performed (over 40 so far this year!!!). Consequently, the wait time from listing to transplant has gone from years to days. This is a note from Dr. Astor letting the team know about the survey results….
Dear Lung Transplant Team:
As a follow-up to our recent UNOS site visit, I am very excited to let you know that we have received a clinical score of 100%, and an administrative score of 99%. These results, coupled with the achievement earlier this year of obtaining the first perfect score (100%) ever granted by CMS to a transplant program, are a testament to the hard work and meticulous attention to detail exhibited by the members of our team. The fact that we have performed more than 40 lung transplants during the past year together with these external acknowledgements of quality performance clearly demonstrate that the MGH Lung Transplant Program has truly become one of the premier lung transplant centers in the U.S.
Thank you for all of your hard work. We look forward to even better times ahead.
Best regards,
Todd
Todd L. Astor, M.D., M.B.A.
Medical Director, Lung and Heart-Lung Transplant Program
Massachusetts General Hospital
Harvard Medical School
55 Fruit Street, Bulfinch 148
Boston, MA 02114
Sending you prayers and letting you know that if you believe and have faith, your daughter WILL recieve this beautiful GIFT OF LIFE ! I live in Canada and my son-in-law was near death after waiting for his lungs and just in the nick of time his prayers were answered and he recieved a double lung transplant two years ago now and is healthier now than he ever was. Sending you prayers and love.
These stories are so heartening. Thank you for taking the time to share. xo
Im a respiratory therapist & mom to a beautiful 22 year old also with CF. It’s it the most core shaking, frightening, life-changing thing to go thru watching your baby cling to life. Mine was on life support a couple years ago. Thankfully after crossfit training (modified) & heavy caloric food consumption she’s gotten strong enough & discharged from transplant clinic & had O2 removed. Although, this was a welcomed pleasant surprise i know the progression of the disease. All I can say is wherever her spirit currently let it rest in the presence of the Most High. God still performs miracles & He loves our babies more than we could (hard to fathom but He does). I will keep your Caitlyn in my prayers & continue raisin awareness for organ tranplantation! Gods peace & rest on her and her family.
Glad to hear that your daughter improved. There’s lots of hope for the future! Thank you for your prayers. xo
Thank you for letting us know she is is stable after the surgery. I cannot imagine what this must like for Caitlin, Nick and you. Praying for all of you and for our miracle. I check often to see if you have you have posted anything to stay aware of each day and your journey. Special prayers are sent and continuously in my thought throughout the day. Nanci Sullivan
My husband and I gave our daughter the “Gift of Life” in 1996. We each donated a lobe. We will continue to pray for that miracle for your daughter, too.
I am a recent candidate of a double lung transplant from UPMC. The docs and team you have working for you are amazing. I am three months post transplant and I have had the same experiences as your daughter. I would love to talk with you about anything you may have questions about. There is no better team in the world than the people who are caring for your daughter right now!! I promise you this!!! I would love to keep in touch with you through facebook to keep informed on her progress as well as share your information with my prayer warriors. I had the best group of ppl behind me and praying for me. I know we can bring your daughter through it as well!!! I have a doctor appointment in Pittsburgh on Thursday (weather permitting). I would love for my mother and I to come meet you to offer love, prayers, and support. I was planning on visiting my old ICU nurses and doctors anyway. Could we make this happen? I would love to be a source of support for her as well bec I have been through these experiences as well. My name on facebook is Megan Elaine. I would love to keep in touch and follow you in case there is anything in which you would need.
We have been in your exact situation in Pittsburgh. You are in the best place possible. Have faith! They saved my wife’s life 9 years ago, if anyone can do it Pittsburgh can!
Jamiebug.blogspot.com
I have CF but my lungs are not at this stage yet. I am 5ft 4 and A+. I would gladly give one of mine, or whatever they can take until they find a more suitable option.
What a loving and generous offer. Caitlin is O and there would be too many complications for both of you, anyway. With CF, you need to hang onto your lungs. Best to you, ❤