Hi! My name is Jennifer, and I am a 29 year old female who was diagnosed with Hypertrophic Cardiomyopathy when I was 21 after dizzy spells and a loud murmur was investigated. The disease was managed for 6 years (unsuccessfully) with calcium channel blockers and beta blockers. The side effects of the medication were worse than any benefit that the medicine offered to my heart and lifestyle. I was miserable and different cardiologists (I moved a couple of times for work) always recommended new drugs as treatment.
My symptoms of chest pain, palpitations, and general exhaustion worsened beginning in early 1999. My gradient moved from 40mmHg resting and in the 60's provoked to over 80mmHg resting and 124mmHg when provoked. Surgery was recommended and I was asked to choose between septal ablation and myomectomy. My IHSS was defined as almost concentric with the septal wall being approximately 2.7cm and general thickness around the left ventricle. After careful consideration and discussions with my surgeons, I chose the myomectomy (against their advice but I am thrilled with my decision). The surgery was performed in Northern California in Feb 2000 (where my husband and I lived at the time) by an excellent surgeon and the recovery went well (a little bumpy). Now, I feel great! I am so much better and my life has changed dramatically. I can't believe how different I feel and I really didn't know that people felt this good and had energy to spare. My gradient is now less than 1 mmHg at rest and provoked. I occasionally have some palpitations (have never had arrhythmias) and will never run marathons, but I usually only "feel" the disease when I am tired or have eaten too much at night.
Here's my issue:
The surgeon and cardiologists in CA both said after surgery that I was now able physically to have a baby and that they saw no obstacles to that end. I have read that the disease could pass to any child I carried at 50% (I am adopted so family history is none) and everyone assumes my case is inherited. Doctors said that I survived a severe case and that the odds are that any child who did inherit this woiuld have a milder case, and if not, we would be able to handle it, etc. It's an "aren't you glad that you are alive?" argument. My husband and I are weighing our options and have not made any decision. I currently take Norpace 150 bid and Toprol XL 50 at night. They work great for me. I do need to lose about 40 pounds before I would attmpt pregnancy.
Would pregnancy increase the likelihood of my septal wall increasing? Is your understanding that any child I bear has a 50-50 chance of getting Hypertrophic Cardiomyopathy? Would I be endagering my life and the life of a fetus (bc of the increase stresses on my heart during pregnancy)? Are there new ways to detect IHSS in little kids? I believe that my severe case does not relate to the severity of an inherited case. Right?
Bottom line is that we are open to any option and have thought about adoption and egg donation and also having a child ourselves. What is your advice about this?
Thanks for taking the time to read this. I have been waiting for weeks to post this questions and await your response (and others) eagerly.