About 7 years ago, Harold, now 73, was looking forward to retiring from his administrative law judgeship and enjoying weekends on the soccer field - a self-proclaimed "weekend warrior" - when his health took a turn. He would have spells of feeling well, then not well, and sought care, concerned that like his father, he might be experiencing congestive heart failure.
"I would get sick, feel better, get sick, feel better," Harold says. "I wasn't responding to any of the treatments."
However, it wasn't congestive heart failure that was causing his health problems. Harold was diagnosed with transthyretin amyloidosis, or ATTR amyloidosis, a rare, slowly progressive systemic disease that causes amyloid (protein) deposits to build up in the body's organs and tissues. In Harold, the disease led to buildup in his heart, and at the time, and his prognosis was grave.
"I was told that I had 6 months to live and to get my affairs in order," he says.
However, Harold's wife, Elvia, wasn't about to accept what was, in effect, her husband's death sentence. She began to research Harold's condition and came across a drug study for the disease being conducted at Stanford University. Harold soon found himself commuting up to the Northern California campus every couple of weeks until he was accepted into the study.
"After several months, I qualified for the study," Harold says. "By this time, I was feeling pretty good, able to run and in good shape, but I suddenly got sick again and was told to return to San Diego to stabilize my health."
With the study participation no longer an option, Harold once again wondered if he really was nearing the end of his life. His primary care provider encouraged him to make an appointment with the heart transplant team at Sharp to see if a heart transplant might be possible.
When hopeless turns into hopeful
"I was running 2 to 3 hours late for my appointment," Harold says. "I considered heading home - I just felt hopeless."
He also felt slightly confused when he was greeted like an old friend in the transplant office by Dr. Mehta, a board-certified advanced heart failure and transplant cardiologist affiliated with Sharp Memorial Hospital. "I knew I had heart troubles, but suddenly I was worried that my mind was going, too, because I didn't recognize Dr. Mehta at all."
However, Dr. Mehta knew all about Harold and his diagnosis. Not because they had met before, but because Dr. Mehta had been working with the doctors in the Stanford study and remembered reading about Harold's case. He told Harold that he believed he needed a heart transplant and knew who could help him get one.
"Transplant for those with Harold's condition was not as commonplace when I first met him," Dr. Mehta says. "I had seen it work at Stanford, though, and wanted to make it possible for Harold."
Harold was transferred to Cedars-Sinai Medical Center in Los Angeles, where a heart might be available. He went through rigorous testing and monitoring for several weeks before being told his health would not stabilize enough for him to qualify for transplant.
Stopping the cycle
By the time Harold returned to LA for a check-up weeks later, his feet had swollen to the size of melons. Seeing how sick he was, Dr. Michele Kittleson, a Cedars-Sinai transplant cardiologist and colleague of Dr. Mehta admitted him to the hospital. She became determined to help Harold break the cycle of feeling well then feeling ill, having hope and being disappointed.
Because of his deteriorating health, Harold was moved up the heart transplant waitlist to status code 1A, which is designated for candidates who have the highest priority on the basis of medical urgency.
Harold Rucker believed he had just 6 months to live until a doctor gave him hope for more. Now, he looks forward to enjoying life with his wife, children and two grandchildren.By February, Harold was back home in San Diego, in the care of Dr. Mehta, with Elvia as his primary caregiver at home and their adult son, Carlos, helping.
"When you receive a transplant, you have to have two people willing to serve as your primary and secondary caregivers," Harold says. "My wife, Elvia, was wonderful, and my son, Carlos, really stepped up and did a great job."
Daughters Iliana, a college professor and then new mother who hosted Harold and Elvia at her home post-surgery, and Nia, an attorney in New Mexico, also helped as much as they could and kept track of their father's continued recovery from afar.
Paying hope forward
Now, years later and finally healthy, Harold is sharing his story in part to thank his care providers in San Diego and LA and also to offer hope to others with ATTR amyloidosis, much like Dr. Mehta did for him.
"Dr. Mehta gave me hope," Harold says. "Before I met him, I didn't have any hope - I was told I would be dead in 6 months - and he went the extra steps to send me to LA and connect me with his colleagues. He generally went beyond what is expected and continues to do the same."
Harold is also going above and beyond to benefit those with the same condition. He attends an amyloidosis support group and shares much of what he has learned along his own journey, including details of the groundbreaking weekly injection medication, inotersen, Dr. Mehta prescribed to slow the progression of his disease.
"Harold regularly keeps himself up to date with the latest research and often will forward meetings or gatherings to our team to stay informed," Marc Verlasky, NP, a nurse practitioner that works closely with Dr. Mehta, says. "He is an avid participant in our heart transplant community, regularly attends our support groups, and has demonstrated an amazing ability to provide support for other patients. He is an informed advocate, always looking for a means to pay it forward."
A miracle too great for the movies
Harold will tell you that he does these things because he looks at his own transplant and survival story as somewhat of a miracle. Considering the chance that Dr. Mehta had studied his case before they even met, the connections Dr. Mehta had and the way his donated heart was such a perfect match, Harold said if you saw his story in a movie, you might not believe it was possible.
"Dr. Mehta gave me hope to believe a transplant was possible," Harold says. "But I don't know how all these other things lined up so perfectly. By the grace of God, I'm here."
And now that he's here and has received the first of two doses of the COVID-19 vaccine, he looks forward to enjoying life as much as he can.
As soon as he and his wife are fully vaccinated and pandemic restrictions begin to lift, there's a lot they can't wait to do. From visiting his children and 2 grandchildren, Naima and Santos, to traveling the world and socializing with friends, Harold continues to feel hopeful about what's to come, and credits Dr. Mehta, Verlasky, the transplant team in LA, the heart donor and his family.
"They're the reason I made it," he says - along with the gift of hope.