HCM-ers: Introduce yourself or just say hi

Welcome @avcowie! You will find a lot of information about HOCM here. I see that you are already off to a good start in the Camzyos discussions. That's great, because there are fellow HOCM folks and fellow Canadians there too! I see you asked a question too about mitral valve involvement. It sounds like you were caught off guard during that visit. Do you know what your next steps are? It is super important that you are being followed by an HCM expert, do you know if your cardiologist is skilled in HCM? Is your plan now to try Camzyos, no surgery?

My name is Gisela and I have been part of an OHCM clinical trial through the UC San Francisco. I am three years into the trial which uses the drug Mavacamten. The company that produced this targeted drug was MyoKardia which was bought out by a large Pharma company. Presently I am in the LTE or long term extension part of this trial and I am doing quite well. I am very impressed with the results of targeted drugs.

The plan is to try the Camzyos for the next three months and see if it truly helps with all my symptoms. If not I’ll be on the surgical route with a mitral valve surgeon and HOCM surgeon taking turns at fixing my heart.
It’s only my first day taking the medication and I’m not feeling well at all. Bloating stomach, headache, back pain, fatigue and ringing ears. I’m monitoring my ecg on my Apple Watch and it’s pretty wild. Trying to not get too anxious about it.

I pray your system acclimates. The drug is not for everyone. The route you have planned is the same one I plan to take.

It would be hard to not be anxious @avcowie, and especially if you are not feeling well. I hope the day gets better and tomorrow you feel much relief going forward. Having crazy heart beats would cause anxiety for sure. Are you able to contact your doctor if you have serious concerns about your reaction to Camzyos?

I’m finding contacting a doctor (even my own cardiologists) quite difficult. They’re all so busy. I do have a nurse manager established by the drug company that’s available business hours.
Today feels like a better day. I slept like a log when I was finally able to fall asleep thankfully.
I’ve got to log my journal now, thanks for the message!

That's good news @avcowie, I'm glad you are feeling better. I hope you have a pleasant Memorial Day weekend, and you have no more issues with Camzyos.

Severe aortic ———-? Changed after TAVR procedure to HCM. ON CAMYZOS for 5 months. No improvement. Went to Emergency Room at hospital. Stayed there 8 days. New Dr. - new meds. 2 lifters of fluid drained from stomach. Lost 30 lbs. on Hospt. food. Took radiological tests at another Hospt. - diagnosed with Amylodosis. On new drug - Vyndamax. I get very tired just walking in house. Average BP is 110/68 - 78. On no salt-low sugar diet to keep weight down. Can’t get enough blood flow to do more.

Hi
I am a senior Citizen with Coronary Artery Decease and other co-morbidity. Vegetarian diet, Yoga 6 days a week for one hour, no tobaccos, no alcohol.
2019 had CABG (Revascularization Surgical Procedures - Triple Bypass Surgery / Triple Coronary artery bypass grafts, coronary bypass x3 with free LIMA to the LAD, saphenous vein graft to the obtuse marginal, saphenous vein graft to the diagonal). On medication Rosuvastatin 10 mg, Ezetimib, Losartan, Low dose aspirin.
Recently had ECHO TRANSTHORACIC (TTE) and found Left Ventricular apical RWMA (regional wall motion abnormality). Cardiologist recommends the LDL to be less than 70 and the apolipoprotein B to be less than 80 so Rosuvastatin from 10mg to 20 mg daily dose increased.
Cardiologist visit is being planned.
Thanks
DJ

Hello @anjalid30,
You have a pretty extensive heart history there! Sounds like your cardiologist is on top of things, so that is a relief I bet. You posted here in the Hypertrophic Cardiomyopathy group, is that something your doctor is working you up for after your recent TTE?