Learn how to use Mayo Clinic Connect
Request an Appointment
I have HCM for over 10 years. Over a year ago I had an ICD implanted due to the presence of Fibrosis . I am looking to find out more about Fibrosis and it’s progression
Hi @ld3000 here is more information on fibrosis with HCM: https://www.nejm.org/doi/full/10.1056/NEJMoa1002659
I also thought that @archer @falconfly and @bpickartz have experience with HCM and may be able to share their experience.
This thread may be beneficial as well, and feel free to share you story with HCM: https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
Back to you @ld3000 did your doctor provide any information on the presence of fibrosis?
I think he stayed that as there was 25% present that I was at risk of SCA and therefore an ICD was required
Jump to this post
How are you? Did you manage to find more information about the fibrosis? I’d really like to hear back from you.
Kanaaz, no I never got any further information on Fibrosis which is disappointing
Hi @ld3000 Were you able to follow up by sharing your story on the link that Ethan originally provided in order to connect with others that have HCM?
Most of the information that I was able to locate is pretty heavily worded since they are studies and not simply articles. I did provide them below if you wanted to look at them, but I would highly recommend sharing what you are experiencing through the other discussion that Ethan linked. The benefit of Connect is that you can lean on other members who have shared similar experiences and get suggestions and tips on how to further your own investigation of your medical treatment. I also re-posted that link below.
Feel free to share you story with HCM: https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
Have you seen the doctor since the ICD was placed? Did he give you any advice on the progression?
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In