← Return to Arrhythmogenic Right Ventricular Cardiomyopathy with MYH6 and RBM20

Discussion

Arrhythmogenic Right Ventricular Cardiomyopathy with MYH6 and RBM20

Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 2 2:22pm | Replies (15)
Comment receiving replies
@karukgirl

Hi @casscond,
@JustinMcClanahan is absolutely right! I hope your phone call goes well, or went well. It seems that when physicians are dealing with a new patient, they typically want the "bottom line" information...not every single lab, x-ray, progress note, nurses note etc. They like a neat and tidy summary. What happened. What caused it. How was it treated. How is the patient now. Volumes of records tend to get overlooked as they go for the discharge summary, history & physical, procedures, operative reports. Having those records will be helpful. Especially the Discharge Summary and History & Physical.
Thank goodness you love school and reading! Does anyone else in your family have this condition? Are you the first?

Jump to this post

Replies to "Hi @casscond, @JustinMcClanahan is absolutely right! I hope your phone call goes well, or went well...."
cassmoney | @casscond | Oct 1 11:44am

I am actually the only person in my family to be diagnosed! My family is from a very poor area of the country and I am the first one to have a SCA. It was treated very atypically and the tests performed at the time were tox screens and STD panels - I had to ask for a genetic test years later when I began to learn more. I did not have the standard cardiac workup and have had to advocate for myself to have such because I had my cardiac arrest blamed on my gender identity/sexual orientation - part of why I want to move as well haha

VIEW AND REPLY