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A Tremendous Gift: Phyllis Alberici’s HCM Story

10/12/2016

Age at Diagnosis: 60s
Age Today: 60s

When I first arrived at Dr. Marty Maron’s office in March 2015, I thought I was dying. Today, thanks to the incredible skill and medical intervention of Tufts MC’s HCM Center, I feel 20 years younger. I can do things I haven’t been able to do in years and I forget I have HCM. My condition is now so well-managed, I have no symptoms. Whereas, just months ago, my health consumed every waking moment of my life. 

I had been symptomatic for five years, but my Albany, NY doctors didn’t understand what was wrong. My symptoms worsened to the point where I couldn’t breathe. I couldn’t walk. I slept constantly. My local doctors hypothesized all kinds of diagnoses. Finally, a pacemaker was implanted. It provided no measurable comfort and I feared there was no hope for recovery. 

Beyond frustrated and increasingly ill, I googled my symptoms and discovered Hypertrophic Cardiomyopathy. I called the HCMA (the disease’s leading national nonprofit) and spoke to Founder Lisa Salberg, who recommended visiting Tufts MC’s HCM Center. 

I went with my family to Boston, where I spent six hours getting a full work-up with Dr. Maron, Dr. Mark Link—an excellent electrophysiologist—and the wonderful Noreen Dolan, NP-C. I went home with an accurate diagnosis, new medication, and the realization that HCM runs in my family—my dad died at 51, as did his dad. 

Though the medication helped, my advanced condition necessitated a more aggressive step to control my HCM. Dr. Ethan Rowin (a genuine, warm, and exceptionally talented physician) explained I was a good candidate for an alcohol septal ablation or a septal myectomy. I discussed these options with my family and Lisa Salberg (the HCMA’s patient advocacy is invaluable) and we agreed which path I should take.  

In January 2016, Dr. Hassan Rastegar performed my septal myectomy, along with a Cox Maze procedure to manage my atrial fibrillation. I was very confident with Dr. Rastegar helming my surgery. He performed more myectomies in 2016 than any other U.S. heart surgeon. He approaches every operation utterly prepared, and he’s known for sticking with patients from start to finish. It was a great comfort to know he wouldn’t leave the room—that he would carry me through my entire seven-hour surgery. 

I won’t lie. For me, recovery was no picnic. I hurt all over and had many conversations with Noreen when I was feeling rocky. She really held me together post-myectomy. Her talent, care, and vigilance are exceptional. 

Challenging though it was, I wouldn’t have missed a minute of this experience. It was a tremendous gift. I’m happier and more optimistic. I went from needing a smorgasbord of medication to virtually none. I made a 100% recovery and got back years of my life thanks to Dr. Rastegar’s phenomenal skill and perseverance. He’s absolutely tops. 

Dr. Rastegar fixed more that day than just my heart. He gave me a chance to live a whole life. I have since re-evaluated my choices, switched careers, and started writing again. Dr. Rastegar gave me a second chance. 

The entire HCM Center team is incredible. Each member embodies the best of what medicine should be. I’m delighted to know them. All of them. And I’m eternally grateful.