Richard's Story

From Marine to HCM patient, Richard shares his experience.

In 1988 not to many people knew what IHSS was, but I soon learned very quickly how devastating this curse of a disease could affect an entire family not skipping a generation since my paternal grandmother died suddenly (ASH) on a fine Saturday morning. Her death certificate calls ASH the culprit of her demise. 

Grandma died in the mid 70's and we had no idea what ASH was. My father suffered tremendously with the disease, but had no idea what grandma had been the same thing that he had. My dad suffered intense debilitating chest pain and never once complained. Even after he suffered a heart attack, he had no idea what time bomb was lurking in his heart. I was stationed at Camp Lejuene in North Carolina when I received a call from my dad who had just come back from a cardiology appointment, he immediately called me, and my siblings to inform us how necessary it was to get a full cardio check-up. Since I was in the Marines at the time of this news, I had made an appointment at the Battalion Aid Station. I did not have a lot of time to research IHSS so I was unaware of the proper way to see if I was afflicted or not. The Naval Officer (Doctor) who performed the examination was obviously unsure how to properly perform a cardiac examination. After a series of squats and breathing exercises, he announced triumphantly that I was disease free. What he heard was a strong Marine Corps heartbeat with a very mild murmur and gave me a perfect bill of health and a return to full duty. After five years had passed, I began to know that something was wrong. Here I am a Staff Sergeant of Marines, training my men with the intensity that salty Marines are known to have. I could not let myself show any type of weakness in front of my subordinates. After a morning of some intense PT (Physical Training), I would have to excuse myself and vomit in the bushes or behind a building. Shortness of breath, near syncope and crushing chest pain was becoming a factor in my performance as a leader. 

 I did not have the nerve to talk to my peers about my problem because a sign of weakness in my business is a career ender. Two years had gone by and I kind of learned how to get around some of the PT problems I was having. Finally, my enlistment was nearly over and I was ready for my reenlistment physical. Since I was over the age of 25, the Marine Corps requires those Marines to get an EKG before any enlistment papers are signed. I was at the Naval Hospital at Camp Pendleton, they did three EKG’s, and I could sense the worry the technician was feeling and I am asking what is wrong? I was becoming frustrated because nobody was telling me anything. Finally, a doctor came up to me and asked me so many questions about my heart and especially my physical training. 

The doctor told me that my EKG was abnormal, showing an infarction and was wheeled swiftly to the ECHO lab. Just before the test, I was introduced to Commander McCaan the chief cardiologist and she explained to me what they were looking for. Everybody was very efficient and asked many questions (family history and such) before I was connected. The ECHO took about 45 minutes. Fifteen minutes had gone by when doctor McCaan came back into the room. Her first sentence was "is six months enough time to get your affairs in order?” I was a little confused about that question. Needless to say, I was written up for a med board and was gone, out of the Corps in less then 6 months. I was a career Marine and I had lost everything I knew from the last 13 years. I finally adjusted to being a civilian again and decided to go back to college for computer information systems.  

My medical retirement from the Corps showed I had an 18mm septum, but three years after my first ECHO I was scheduled for my second and to my amazement, my septum had grown another 10mm totaling 28mm. My left ventricle was a tiny little slit with an ejection fraction of around 39. I could not finish school because I was finally introduced to syncope, bashed my head pretty good. My first ICD was implanted in 1998. Following the implantation, I developed several tia's. Wondering where these clots were coming from was their next move was a TEE. Sure as heck, there was a quarter size clot in my left atrium that left me in the hospital for 16 days. It took doctors, nurses, EP's and cardiologists 5 years to get me as comfortable as I could with a combination of meds, devices and a very careful exercise regiment. Today I am ok; I have been examined by Dr. Ashley from Stanford, Dr. Omen from MAYO, Dr. Kou from Ann Arbor (UofM) and my current, local cardiologist Dr. Snyder from Cardiologist Consultants. Now I have diabetes, GERD, Neuropathy, Sleep Apnea and other ancillary problems related to my current health issues. A septal ablation, dual chamber pacer and a plethora of medications that would put Dr. House to shame, but all in all I am happy with my care and the sincerity of most of the doctors I have worked with, especially on the pain issues. Topping things off on a negative note, it is unfortunate that my dad, sister, and niece are all inflicted with this curse. Dr. Ashley confidently believes that all of us are candidates for a heart transplant. I have decided at this time not to be a candidate. Three generations afflicted with HCM???  I was under the impression that HCM skips generations. So far, none of my boys have the disease and they are aware what to look for if they are exercising and get any of the symptoms. I have participated with PGX Health for gene screening with the rest of my diseased family will provide blood samples too.

Richard E.