RIP Marty O'Brien

$815 of $3,000 goal

Raised by 13 people in 72 months
My name is Marty O'Brien, and I was born with the genetic disorder Familial Adenomatous Polyposis, or FAP. I have been battling this disease since my diagnosis at Massachusetts General Hospital in 1995. I have an abdominal tumor, called a Desmoid tumor, which has been around unfortunately since 1998. My story sometimes feels too long to tell, but the long and short of it is that I suffer from an orphan disease, meaning it is very rare, and there is not much money abounding for research and treatment. My wife and I been told many times that I have been close to death. Too many for me, thanks! 

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. ☺
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On Wednesday, September 16th, my husband's courageous, and extremely lengthy battle with Familial Adenomatous Polyposis and an aggressive abdominal Desmoid Tumor ended. It was a quick decline this week, and I feel blessed that his last couple days with us were calm, and without any pain.

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.
During a visit to his long term acute care facility in June 2015 - He spent the last 17+ weeks of his life there.
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14 years ago one of these should have killed Marty. It was the first time we knew he was a superhero! Check out this informative article from the Cleveland Clinic!

http://cle.clinic/1HuJlgA
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In addition to the massive amount of time spent in the hospital this year, Marty has now been residing at a long term acute care facility for almost 6 weeks, with another 6 ahead of him. It was an extremely difficult decision to make, but it was for the best. Marty was in a very bad place, where even with home nursing, it was just apparent that he could not be cared for at home in his condition. With three drains, an ostomy, a PICC line IV in his arm, TPN (IV nutritional therapy), and four IV antibiotics cycling around the clock, it just didn't make sense to put such pressure on him and everyone to continue to try to make it work.

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
June 2015
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With the near constant trips to the hospital this year, we have indefinitely postponed the trip to Ohio. The wonderful donations from family and friends during both waves have thankfully helped offset some of our medical expenses which can sometimes include costly medical supplies not covered by insurance.
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Read a Previous Update
35 months ago

I have FAP/Gardeners syndrome as well. I'm so sorry for your loss.

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Maggie Schmitt
36 months ago

I also have tumors and lost family to this...I am so sorry.....

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Rachel Harris- Beck
72 months ago

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 -

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$815 of $3,000 goal

Raised by 13 people in 72 months
Created December 29, 2012
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D
$20
dandantheitman
49 months ago

All the best Marty!

BC
$100
Becca coull
49 months ago

Please help Marty get the care he needs.

HD
$100
Helen Digout
49 months ago

Best of luck Martin

LD
$50
Lennie Digout
49 months ago

Good luck Martin!

DC
$100
Donna Cusimano
49 months ago

Here's hoping the donations come pouring in and you get the help you need. Love Donna

$50
Anonymous
70 months ago
$25
Anonymous
72 months ago
$100
Matthew White
72 months ago

Angie and I wish you luck sir.

SM
$50
Susan A. Mahony
72 months ago

From The both of us to my old childhood friend Marty,I am wishing for your health to get better.Wish this could be so much more. Danielle is also wishing for you to get well.Your in our prayers xo ~Susan

DK
$100
darith khuon
72 months ago

I hope you will get better my friend.

35 months ago

I have FAP/Gardeners syndrome as well. I'm so sorry for your loss.

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Maggie Schmitt
36 months ago

I also have tumors and lost family to this...I am so sorry.....

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Rachel Harris- Beck
72 months ago

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 -

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