Kevin O'Neil is recovering very well after a heart and kidney transplant — but he still faces a battle with a rare blood disease.
Kevin O'Neil believes he has "no earthly business" being alive.
On Jan. 14, 2014, he toppled over on his couch in his San Diego home in full cardiac arrest. His wife — a seasoned Navy nurse — and his brother performed CPR with increasing intensity as the minutes ticked by.
"My brother was cursing a blue streak and my wife said she didn't know how he didn't break every rib pounding on my chest," O'Neil said. "He told me later, 'You looked like a cadaver on a TV show.'"
After perhaps eight minutes, O'Neil gasped for air and his brother felt a flutter in his chest. As his wife sought his pulse, paramedics arrived, and soon he was joltering back into consciousness in an ambulance.
That cardiac arrest was one of several near-death experiences O'Neil has endured in recent years. Today, he is alive thanks to a heart and kidney transplant performed by the surgical team of the Heart Transplant Program at the Smidt Heart Institute. His new organs allow him to continue an ongoing battle with the condition underlying this cascade of medical issues: an extremely rare blood disease called AL amyloidosis.
O'Neil first recognized he was ill in August 2013. He was in his 20th year of active duty with the Navy Judge Advocate General's Corps, serving as a senior military judge. His wife had been a nurse for about as long as he had been practicing law, and together they had traveled the world with the Navy. They had two children and the future felt solid. Then, after two months of trying to figure out his condition, a doctor told O'Neil he had AL amyloidosis.
"That was a thud, an emotional thud," O'Neil said. "I don't think anybody could be prepared for that type of diagnosis, particularly once I got on the Internet and saw it was pretty rare and did not have a good prognosis."
AL amyloidosis is considered a variant of multiple myeloma, a cancer that causes a protein called amyloid to build up in tissues and organs throughout the body, which can lead to organ failure. There is no cure, but there are effective therapies to limit the production of amyloid protein, including chemotherapy. In O'Neil's case, the proteins were damaging his heart and kidneys.
O'Neil's cardiac arrest came during a round of chemotherapy intended, as he put it, to "beat the disease down." The chemo did just that, but his body took a beating in the process. The treatment caused him to retain fluid.
"I literally looked like the Michelin man," O'Neil said. "I had 30, 40 pounds of fluid on me and I was admitted twice to the naval hospital to get it drained."
After the cardiac arrest, O'Neil was transferred to Cedars-Sinai so he could get the specialty care he needed.
"Up to that point, it had been a series of dreadful experiences," O'Neil said. "First, to get that diagnosis; and then the treatment made me swell up. The heart was getting worse, and I was told that amyloid patients were not considered for transplants."
Everything changed when he arrived at Cedars-Sinai. A multidisciplinary team of physicians met him and laid out a plan: The cardiology team would first replace part of his dying heart with an artificial device that could pump his blood for him. When organs became available, he would receive the heart-kidney transplant. Then, about a year after the transplant, his oncologist would provide him with a blood stem-cell transplantation that is a primary option for treating AL amyloidosis.
"There were a ton of unknowns," O'Neil said. "But it was a plan, and the physicians were confident. It was the first time that I thought, 'I might get through this.'"
The decision to accept an artificial heart was the toughest for him. In the procedure, surgeons would remove the lower chambers of his heart and replace them with the mechanical device — a SynCardia Total Artificial Heart — driven by an external power source.
"My wife and I talked about it intensely, because once they take out your heart it's not like you can get it back later," O'Neil said. "It was the realization that in this life, with this organ, you're done."
O'Neil's condition made placement of the artificial heart a challenge. He almost died at least twice during surgery, and when he woke up days later he couldn't speak or swallow. He pushed through, however, and worked with an occupational therapist to regain his strength.
"I think for anybody to go through what Mr. O'Neil has been through, they have to be tough and they have to have that desire to live," said O'Neil's oncologist, Robert A. Vescio, MD, director of the Cedars-Sinai Multiple Myeloma and Amyloidosis Program.
Indeed, by the time O'Neil got the call that a heart and kidney were available, he wasn't the least bit afraid of the surgery.
"By that point," he said, "I had watched myself recover from the artificial heart surgery. I had watched the amyloid numbers go down a little bit thanks to medication. I was ready."
The double transplant was performed on the Fourth of July in 2014 and it went very well. In the year after the surgery, O'Neil's body healed while he continued to take medication to slow the proliferation of amyloid proteins.
O'Neil gives credit to his wife — "Without Dawn, I'm not alive" — and an army of family, friends and Navy associates for providing support that has helped him throughout his medical journey.
"That army blossomed into probably 300 or 400 people praying for us, following this story," O'Neil said. "I feel a responsibility to all of them to not give up. I have to fight with everything I have."
The fight is not easy, emotionally or spiritually. O'Neil, a Catholic, found himself in church wondering why he was there.
"I never felt cheated, but I was a little … upset," he said. "My two children are adopted. My son has his own medical challenges. My kids needed a dad."
The roller coaster of illness, recovery and more illness has brought a meditative calm to O'Neil.
"I try to appreciate the very small, simplest moments as they occur," he mused. "There's a palm tree I can see when I'm sitting in my backyard. I look at this beautiful palm tree in different weather — watch it blowing, or sitting against a blue sky. I swear to God I never saw that thing before. And it's huge."
O'Neil had to hang on to that perspective through the latest round of treatment — a stem cell transplantation that carries unpleasant side effects and no guaranteed results for AL amyloidosis.
"In maybe 40 to 50 percent of patients who undergo the procedure, it fixes them for good. The rest are not so lucky and they need to be retreated somehow," Vescio said. "But Mr. O'Neil and his wife are a good team. They have stuck it out and they will continue to do so."
O'Neil's disease is in remission. He will be checked every three months, and if the amyloids make a comeback, Cedars-Sinai will be there to make sure the disease cannot dig in.
As O'Neil waits for the next chapter of recovery to unfold, he is relishing the small moments:
"There's something my wife said once: 'I have to mourn the life I had and celebrate the one I have.' Well, I don't know what I have yet, but I will try to enjoy it."