Thank you for sharing your story. I have been curious about what your history is. In fact, if this isn't too invasive, I also wonder what it is like to experience a transplant of one of the most important organs in your body? What is it like to live with an ICD? How did you learn to advocate for yourself?
As a pediatrician I hope I didn't prolong a child's and their family's suffering by missing the diagnosis of HCM. But I can understand how it happens...asthma we see every day, but a general pediatrician might never see a patient with HCM that hasn't already been diagnosed. Are there any clues that you think would help a pediatrician think HCM with a kid believed to have asthma?
I love your Substack, and please keep writing! Wishing you the best in your journey.
Hi Kai, for detailed diagnostic information, please visit the Hypertrophic Cardiomyopathy Association website at 4hcm.org. They have a wealth of information. However, in short, if you have a patient with exercise-induced asthma, give their heart a close listen, and if you hear a murmur, refer them for further testing. Also, ask about family history. Do they have any family members who passed from cardiac issues at an early age (below 50 or 60). HCM is quite often a hereditary disease. Also, rapid acceleration of the disease can be seen in puberty.
I have written a few posts about receiving my transplants. I'm not sure if there's a search engine to sort through posts here on Substack. I have tagged them as "heart transplant" when I posted them. I will see if there is a way to tag you on them.
Thanks for sharing this! Good info~I'm subscribing to your site now. Elizabeth Spring from elizabethspringpoetry
Thank you for sharing your story. I have been curious about what your history is. In fact, if this isn't too invasive, I also wonder what it is like to experience a transplant of one of the most important organs in your body? What is it like to live with an ICD? How did you learn to advocate for yourself?
As a pediatrician I hope I didn't prolong a child's and their family's suffering by missing the diagnosis of HCM. But I can understand how it happens...asthma we see every day, but a general pediatrician might never see a patient with HCM that hasn't already been diagnosed. Are there any clues that you think would help a pediatrician think HCM with a kid believed to have asthma?
I love your Substack, and please keep writing! Wishing you the best in your journey.
Hi Kai, for detailed diagnostic information, please visit the Hypertrophic Cardiomyopathy Association website at 4hcm.org. They have a wealth of information. However, in short, if you have a patient with exercise-induced asthma, give their heart a close listen, and if you hear a murmur, refer them for further testing. Also, ask about family history. Do they have any family members who passed from cardiac issues at an early age (below 50 or 60). HCM is quite often a hereditary disease. Also, rapid acceleration of the disease can be seen in puberty.
I have written a few posts about receiving my transplants. I'm not sure if there's a search engine to sort through posts here on Substack. I have tagged them as "heart transplant" when I posted them. I will see if there is a way to tag you on them.
Thanks! I can dig through your Substack for the answers to my question- don't go to the trouble of tagging me! I'll take a look at that website, too.