AnnetteP
07-08-2008, 02:10 PM
I wrote this in reply to a question a member had regarding the possibility of being misdiagnosed with coronary artery disease (CAD) but it got too long to be just a reply and I did not want to hijack their thread. I hate to tell this story because it causes me so much pain, regret and embarrassment; but I think it would help others if they knew, so here goes. Apologies in advance for the length.
When I was 28, I was about six weeks pregnant with what was to be our second child and I was visiting my mom in the small town I grew up in in Virginia. It was Memorial Day Weekend and I had attended my nephew’s baseball game in 85 degree heat and was feeling out of breath and dizzy by the time I got back to the car with our seven-month-old. I put it off as just being hot; thinking I would feel better once in the air conditioning. When my heart rate had not settled down hours later, I decided we better call the rescue squad.
After being connected to the heart monitor, I could tell by the faces of the rescue personnel that something was wrong. Growing up in this small town, I knew them all and they all knew my mom had a “rare” heart condition. We rushed the 40 miles to the ER with lights flashing and sirens screaming. During the ride, I was given oxygen and my pulse had settled down a little by the time I got to the ER.
Once there I told everyone I came in contact with that my mom has IHSS (one of the former HCM acronyms) but I was told over and over that there was nothing wrong with me. They moved me to a room to keep me overnight for observation. As I sat in the bed wondering why no one would believe me, I overhear the floor doctor and the cardiologist discussing my case. “She’s just upset because she is pregnant and already has a little one at home” the hospital doctor said snidely. “Yeah, it’s just indigestion. There’s nothing wrong with her heart” the cardiologist agreed. And they left to enjoy the rest of their holiday weekend.
I sat, crying silently, wondering if I was a fool for believing I was actually sick. As the nurse walked in, I recognized her from high school. She asked what in the world I was there for and I told her apparently nothing. After we caught up on what had been going on in our lives for the past ten years, she checked me over and listened to my heart. “Anybody ever tell you you have a murmur” she asked.
I was discharged the next morning with instructions to take over the counter medication for my “indigestion”. I pushed the issue and saw a cardiologist in Richmond anyway. He listened attentively as I explained my mom’s IHSS/HCM diagnosis. He ran an EKG and had an ECHO and Stress ECHO performed. Finally, someone was listening to me, believing me and was doing something!! I returned a few days later to discuss my treatment plans and hopefully how to deal with IHSS/HCM and pregnancy. I was floored when he told me I had suffered a heart attack, I had coronary artery disease (CAD) and the ECHO’s showed absolutely no sign of IHSS/HCM. I then had to meet with a high-risk obstetrician who informed me that I had a 50 percent chance of delivering the baby. The other 50 percent was split between, me having another heart attack during the pregnancy and the baby dying or me not surviving at all to deliver the baby.
I sat in shock for a week. My husband and I had to make the hardest, most regrettable decision of our lives. Abort the baby so I would hopefully not have another heart attack or try to carry the baby and risk losing it all (me and the baby). As we sat watching our son in his bouncy one night, it was decided. I could not risk not being there to be his mom. I aborted our child in July of 1999.
A few months later, we moved to Jacksonville, FL so I found another cardiologist that could help me manage my CAD. Although I brought the results of my original ECHO with me, he wanted to do another. When I handed his technician my ECHO report she studied it with a perplexed look. “This can’t be right” she said. “If this were right”, she started “you would have Idiopathic…” “Hypertrophic Subaortic Stenosis” I finished. It was right there on the original report. My first cardiologist had the answer in front of him and had still misdiagnosed me. I never had coronary artery disease.
I have cried a river of tears since then. Not because of my HCM diagnosis; I can handle that. But because I lost something that I never should have lost and I can never have back. Our baby would have been eight-years-old this January.
I recently had a myectomy and mitral valve replacement performed by a non-HCM specialist. I’ll save that story for another time. Too many tears have fallen upon this keyboard today.
If you have been diagnosed with HCM or even suspect HCM, please, please go to an HCM specialist! Sometimes it is not just our lives that are at risk.
Annette
(P.S. We did go on to have a healthy baby girl the next year.)
When I was 28, I was about six weeks pregnant with what was to be our second child and I was visiting my mom in the small town I grew up in in Virginia. It was Memorial Day Weekend and I had attended my nephew’s baseball game in 85 degree heat and was feeling out of breath and dizzy by the time I got back to the car with our seven-month-old. I put it off as just being hot; thinking I would feel better once in the air conditioning. When my heart rate had not settled down hours later, I decided we better call the rescue squad.
After being connected to the heart monitor, I could tell by the faces of the rescue personnel that something was wrong. Growing up in this small town, I knew them all and they all knew my mom had a “rare” heart condition. We rushed the 40 miles to the ER with lights flashing and sirens screaming. During the ride, I was given oxygen and my pulse had settled down a little by the time I got to the ER.
Once there I told everyone I came in contact with that my mom has IHSS (one of the former HCM acronyms) but I was told over and over that there was nothing wrong with me. They moved me to a room to keep me overnight for observation. As I sat in the bed wondering why no one would believe me, I overhear the floor doctor and the cardiologist discussing my case. “She’s just upset because she is pregnant and already has a little one at home” the hospital doctor said snidely. “Yeah, it’s just indigestion. There’s nothing wrong with her heart” the cardiologist agreed. And they left to enjoy the rest of their holiday weekend.
I sat, crying silently, wondering if I was a fool for believing I was actually sick. As the nurse walked in, I recognized her from high school. She asked what in the world I was there for and I told her apparently nothing. After we caught up on what had been going on in our lives for the past ten years, she checked me over and listened to my heart. “Anybody ever tell you you have a murmur” she asked.
I was discharged the next morning with instructions to take over the counter medication for my “indigestion”. I pushed the issue and saw a cardiologist in Richmond anyway. He listened attentively as I explained my mom’s IHSS/HCM diagnosis. He ran an EKG and had an ECHO and Stress ECHO performed. Finally, someone was listening to me, believing me and was doing something!! I returned a few days later to discuss my treatment plans and hopefully how to deal with IHSS/HCM and pregnancy. I was floored when he told me I had suffered a heart attack, I had coronary artery disease (CAD) and the ECHO’s showed absolutely no sign of IHSS/HCM. I then had to meet with a high-risk obstetrician who informed me that I had a 50 percent chance of delivering the baby. The other 50 percent was split between, me having another heart attack during the pregnancy and the baby dying or me not surviving at all to deliver the baby.
I sat in shock for a week. My husband and I had to make the hardest, most regrettable decision of our lives. Abort the baby so I would hopefully not have another heart attack or try to carry the baby and risk losing it all (me and the baby). As we sat watching our son in his bouncy one night, it was decided. I could not risk not being there to be his mom. I aborted our child in July of 1999.
A few months later, we moved to Jacksonville, FL so I found another cardiologist that could help me manage my CAD. Although I brought the results of my original ECHO with me, he wanted to do another. When I handed his technician my ECHO report she studied it with a perplexed look. “This can’t be right” she said. “If this were right”, she started “you would have Idiopathic…” “Hypertrophic Subaortic Stenosis” I finished. It was right there on the original report. My first cardiologist had the answer in front of him and had still misdiagnosed me. I never had coronary artery disease.
I have cried a river of tears since then. Not because of my HCM diagnosis; I can handle that. But because I lost something that I never should have lost and I can never have back. Our baby would have been eight-years-old this January.
I recently had a myectomy and mitral valve replacement performed by a non-HCM specialist. I’ll save that story for another time. Too many tears have fallen upon this keyboard today.
If you have been diagnosed with HCM or even suspect HCM, please, please go to an HCM specialist! Sometimes it is not just our lives that are at risk.
Annette
(P.S. We did go on to have a healthy baby girl the next year.)