About the creator/founder of HCMBeat:
Cynthia Burstein Waldman (some readers may know her as “Cynaburst”) is a motion picture attorney and mom who has been living with HCM for the last twenty years. She is the third generation of her family known to have HCM. Her paternal grandfather and uncle died suddenly as a result of HCM, while her father suffered from complications of the disease for much of his life. Due to her unfortunate family history with HCM, Cynthia decided to seek a different path for herself.
Cynthia, a graduate of Newcomb College (Tulane University) and Tulane University School of Law, is a native of New Orleans, Louisiana, but for the last twenty-six years she has made her home in Los Angeles, California where she now lives with her husband, Vince and their 14-year-old son, Jesse.
You can always find her cheering on her beloved New Orleans Saints on Sunday mornings during football season, which can sometimes give her palpitations. Luckily, her faithful ICD is always watching over her!
(If you are a Saints fan, you will understand what that means!)
A message from Cynthia:
My own personal history of life threatening illnesses has taught me to be thorough and comprehensive in researching my healthcare options. In 1999, just before my wedding, with plans to start a family in the forefront of my mind, I was diagnosed with HCM. Told I had a genetic disease which caused sudden death, I envisioned the worst, and saw my carefully laid plans fading away for the life I had dreamed. I burst into terrified tears, sobbing as I absorbed the news from my then cardiologist over the telephone.
With the loving support of my then fiancé, now husband, Vince, I got busy and started learning more about my new diagnosis. Lucky for me, I had a fabulous tool at my disposal: the internet had grown past its infancy and had become a great resource for researching health care. Through the World Wide Web, I was able to find a patient advocacy organization that focused just on HCM and had the opportunity to connect with a host of other patients travelling along the same path. Some were a little further down it, while others had been traveling the path since childhood, but wherever they found themselves, they all had words of comfort, wisdom, and excellent advice to offer. They helped me realize that I had NOT just been handed a death sentence. In fact, with the right care and a few extra precautions, I would be able to live a full life and be a mother to my hoped-for child for many years to come.
After careful consideration, and advice from my new friends, as well as several doctors and other health professionals, Vince and I decided to go forward and have a family. My pregnancy in 2001 was largely problem-free, even though world events were less so: in fact, on the day of the 9/11 tragedies, I found myself walking through the grocery store wearing a Holter monitor and hoping no one would notice the wires sticking out from under my shirt and confuse me with a suicide bomber!
Just before Thanksgiving 2001, we were delighted to welcome our son, Jesse. However, we were not able to fully celebrate the arrival of our newborn, since once again life threw us a curveball that we did not anticipate. In January 2002, as I struggled through the haze of sleepless nights, suffering unexplained headaches that I had ascribed to the stress of the pregnancy and feedings every three hours, I was diagnosed with a golf ball sized Acoustic Neuroma (AN), a benign (but still potentially fatal) brain tumor on my auditory nerve. The large size and location of the tumor, which was already compressing my brain stem and causing me some neurological impairment, meant that immediate surgery was my only realistic option. I had two surgeries to treat the AN, and I suffered through an arduous recovery process. The suddenness of my illness, compounded with the complications from the after-effects of treatment, left me without a compass or frame of reference for a completely unfamiliar and terrifying situation. I realized that the only way to navigate such uncharted waters was to get busy and do some serious research once again!
Gaining more familiarity with ANs and their treatment, and joining another patient advocacy organization for patients who had travelled along THAT path, helped me to understand and put into context what I had been through, and helped me see what I needed to do to put my diagnosis and surgeries behind me. I got busy learning to live with my “new normal” which involved, among other challenges, the total loss of hearing in my right ear.
As my months of rehabilitation following the brain surgery began to pay off, my heart condition decided to once again rear its ugly head and remind me that it was not to be forgotten. About ten months after the surgery, I almost fainted after walking off the elevator in my condo building. My then-cardiologist referred me to an electrophysiologist (E.P.) in his practice, who in turn recommended an Electrophysiology study (E.P. study) to evaluate my need for an Implantable Cardioverter Defibrillator (ICD). Having done my research, I questioned him. “Isn’t it true that E.P. Studies are of questionable benefit in HCM patients?” Well, he said, “it is still the right thing to do in your case. If you don’t agree, you can get a second opinion.” So, that is what I did. I got THREE of them, because I was especially concerned that if I got an ICD I would no longer be able to have MRIs to watch out for any regrowth of my AN. (*Note that some ICD manufactured today are, in fact, MRI compatible). Ultimately, none of the other 3 doctors recommended that I proceed with the E.P. Study, but they did all agree on one thing –based on my personal risk factors, an ICD was a good idea. So, once it was decided I would become battery operated for life, I made it my business to find another E.P. who was more knowledgeable about HCM, and along with my new E.P. I also found a new local cardiologist who was more familiar with HCM.
Meanwhile, my symptoms began to sharply increase in the years after my ICD was implanted. My shortness of breath gradually began to worsen, to the point where I was unable to walk up the slightest grade without feeling short of breath. Chest pain became my constant companion. I avoided stairs and hills wherever possible. I tried taking increasing doses of beta blockers for years, until I ultimately maxed out on the dosage. With my medical options diminishing, my new HCM cardiologist suggested that I try adding disopyramide to my regimen. The disopyramide worked to relieve my symptoms for a while, but after two years, the benefits began to diminish while the side effects ramped up.
My local doctors were reluctant to suggest that I undergo myectomy surgery because to them, I appeared healthy, but I was unhappy with my quality of life. Around that time, I had the opportunity to attend a seminar where I was able to meet top HCM experts in person, including the HCM doctors from the Cleveland and Mayo Clinics, both top centers for clinical treatment as well as for septal reduction. I spent a weekend hearing all of the latest research and recommendations and went home with my head swimming with new information. After a huge amount of soul searching and inner reflection, on August 11, 2006, I decided I would travel to the Mayo Clinic in Rochester, MN.
At Mayo, a multitude of tests and a meeting with the head of their HCM program led to my decision to undergo an extended septal myectomy. The surgery went as planned, and my surgeon there, Dr. Joseph Dearani, was able to reduce my outflow tract gradient from over 100 mm of mercury to 0.
Note that if you are interested in reading in detail about my surgery and my fantastic experience at Mayo Clinic, you can read the blog I wrote about it here.
It now has been ten years since my surgery, and I believe that traveling to Mayo and having a myectomy was the best decision I ever made. My experiences have convinced me of the importance of being treated by experts in HCM. Not all cardiologists or hospitals have the necessary expertise to treat HCM, which can be a fickle and sometimes unpredictable disease. Having found my way to top experts in the field, I hope that I will be able to stay ahead of the disease, and live a normal life, spending my golden years taking my grandchildren to the playground, while being grateful for and appreciating the advances that science has afforded me and my descendants. And maybe, just maybe, my grandchildren will be able to live without the specter of HCM looming over them and their grandchildren.
The research skills I obtained through my work as a research attorney, combined with the vast amount of information and resources currently available on the internet, provided me with the tools and resources to find the best doctors and treatments for myself. With this blog, I hope to be able to assist others who are faced with decisions about HCM by pulling together the latest advances in HCM, the thought leaders in the area, and useful resources for living with this disease.
Almost 20 years after I first learned I had HCM, I am happy to say that I am living a fulfilling life, I have a beautiful son that makes me proud every day, and I hope to be able to bring hope and knowledge to others who may be fellow travelers on the HCM road.
Best wishes for a long and healthy life,
HCMBeat is funded, in part, through an unrestricted grant by MyoKardia, Inc.