← Return to Arrhythmogenic Right Ventricular Cardiomyopathy with MYH6 and RBM20

Discussion
Comment receiving replies
@manuelpo

Doctors sometimes are fully booked for months. My doctor NEVER received the emailed referral that was sent twice (too many pages did not go through I guess) so I visited in person to the new Cardiology Center and took the referral of 40 pages with me so they scanned and uploaded the referral creating my file. Notice you may need to do the same thing so I was able to be seen as emergency by the new Cardiologist in only 3 weeks waiting time. He is highly specialized in Obstructive Hypertrophic Cardiomyopathy so he gave me 3 options: start treatment with a capsule named Camzyos, or have alcohol ablation invasive heart procedure or have open heart surgery. I am almost 65 years old with this problem that was under control for about 15 years but after I had Covid 19 last year it got out of control with a septum basal diameter size of 2.2 cm (almost 1 inch!!! blocking my lower left ventricle of my heart). I am on strict diet and lost 20 pounds in only 2 months and I walk 2 miles daily which all of that helps a lot. I chose Camzyos which in only 1 week made me feel so much better able to brief better and the angina was gone!!! no more chest pain, no need of open heart surgery!!. In only 8 weeks my basal septum size reduced in diameter size from 2.2 cm to 1.6 cm so I now have color on my face and brief a lot better (even when I have severe sleep apnea). I am now 6 months on Camzyos 5 mg (once a day) and my life is so much better that I do not ever want to stop taking that medicine. I hope God protects you so you can take the doctor referral in person to the Mayo clinic (specifically the Cardiologist office) to visit them so they can upload your referral and expedite an appointment for you so you do not have to wait months. Best luck to you and I hope you feel better soon.

Jump to this post


Replies to "Doctors sometimes are fully booked for months. My doctor NEVER received the emailed referral that was..."

Thank you for sharing that!! I'm so glad they got you to feeling better and you're doing good! I can tell my heart has gotten worse this summer and every time I get sick (mine increases risk of infections as well as my preexisting autoimmune disease) it hits me like a train. I will definitely keep that in mind about the referral - didn't think about that