1. < Hypertrophic Cardiomyopathy (HCM)

Myocardial Fibrosis in HCM

Posted by ld3000 @ld3000, Nov 23, 2019

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

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Ethan McConkey, Moderator | @ethanmcconkey | Nov 23, 2019

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?

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ld3000 | @ld3000 | Nov 24, 2019

I think he stayed that as there was 25% present that I was at risk of SCA and therefore an ICD was required

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1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 13, 2020
In reply to @ld3000 "I think he stayed that as there was 25% present that I was at risk of..." + (show)
@ld3000

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

Hi @ld3000,

How are you? Did you manage to find more information about the fibrosis? I’d really like to hear back from you.

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1 reply
ld3000 | @ld3000 | Jun 26, 2020
In reply to @kanaazpereira "Hi @ld3000, How are you? Did you manage to find more information about the fibrosis? I’d..." + (show)
@kanaazpereira

Hi @ld3000,

How are you? Did you manage to find more information about the fibrosis? I’d really like to hear back from you.

Jump to this post

Kanaaz, no I never got any further information on Fibrosis which is disappointing

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Amanda Burnett | @amandaa | Jun 29, 2020

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/
https://pubmed.ncbi.nlm.nih.gov/30358845/
https://www.escardio.org/Working-groups/Working-Group-on-Myocardial-and-Pericardial-Diseases/Publications/Paper-of-the-Month/Prognostic-Significance-of-Myocardial-Fibrosis-in-Hypertrophic-Cardiomyopathld3000 https://www.escardio.org/Working-groups/Working-Group-on-Myocardial-and-Pericardial-Diseases/Publications/Paper-of-the-Month/Prognostic-Significance-of-Myocardial-Fibrosis-in-Hypertrophic-Cardiomyopathy

Have you seen the doctor since the ICD was placed? Did he give you any advice on the progression?

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