RIP Marty O'Brien
I have been cared for at three major teaching hospitals, yet have never had a specialist who actually actively researches and treats FAP and Desmoid tumors. I have an opportunity to meet the only doctor who *does* include my disease in his list of specialties. He is Dr James Church in the colorectal surgery department at the famous Cleveland Clinic. We hope to raise enough money to help with lodging, and transportation to and from Cleveland, OH, as well as any medical costs I will incur as part of the trip. Any help will be so gratefully appreciated. ☺
He became septic last weekend, and by Monday his blood pressure took a major dive down to 60/30, with a skyrocketing heart rate of 175. Later that night the doctor at his long term acute care facility sent him to the ER at the local hospital for a CT scan. Before the scan, Marty aspirated, and has to be intubated. It was a fast couple days. We met with the doctor in the ICU, and quickly decided that the plan of care needed to change from the current one including the four different antibiotics he was on. Basically even attempting to clear the sepsis would just have been teeny bandaid on a much larger issue. We made the difficult decision, but the best decision for Marty nonetheless, to have the ventilator removed, and all medication taken down. That, included with the four antibiotics, was a medication to help keep him BP up. About fourteen hours later, at 7:15am, he passed away peacefully.
I know this is all factual and sterile medical information, but my brain and heart are still processing. I at least wanted to update our page. The journey to meet Dr Church at the Cleveland Clinic never came to be. It was almost three years of disappointment, each time we tried to travel out there. He was just too ill.
It's going to be ok. He is no longer suffering. He never has to wake up at 3am to run an IV antibiotic, or stand crying in the bathroom, because his drain dressing had just leaked after he had just spent 25 minutes changing the previous dressing. Of course, it's *not* ok that I miss him right now more than I can express, and that he fought sooo hard to battle a tumor and disease that we knew was going to win in the end.
I just miss him. His intellect, humor, awkwardness, blue eyes, and all of the amazing things that he taught me over the last 15.5 years.
Rest well, Poopa.
It was scary to have to have him taken to the hospital in an ambulance because he was just too thin and weak. He was under 120lb, and enormously fatigued.
Thankfully, he is feeling better and stronger, due to the amazing effort he is putting into his Physical and Occupational Therapy!
One massive downside, of course is how terribly much we miss each other on a daily basis. He is a long drive away, and with the cost of gas, and how stressful it is on my body to travel in a car for extended periods of time, I cannot get over enough as I would prefer.
Please continue to send him your love and support. He is my superhero. xo Jessica
I have FAP/Gardeners syndrome as well. I'm so sorry for your loss.
I also have tumors and lost family to this...I am so sorry.....
Marty, I'm from Cleveland and I am almost certian that Cleveland Clinic can find you a travel grant to see Dr. Church. My BFF had brain surgery there and they gave her a $500,00 grant. You should really call them and ask if they have resources!!!! Best of luck dear -