HCM-ers: Introduce yourself or just say hi

Enjoy the pool! Where I live in way far Northern California, we were 111 yesterday, 109 today. Ugh! Looking forward to having you come back!

Wow such a lovely speedy reply! Thank you. I’m in a rush to get to the pool but will definitely be back with some numbers. I’m so glad to be in touch with other people going through this💜

Welcome to Mayo Connect @newtosohcm! I'm so glad you found this group. Today is the start of hopefully promising results with Camzyos. I am also glad to hear that you are being treated by someone who specializes in HCM and HOCM. @kelliw, @jaymaysea, @nbs are all on this journey too, and they have shared their experiences with others just beginning like you. I was told that there is a 50/50% chance of passing this on to your children. I would guess that UCSF would recommend genetic testing for your kids? And how fortunate you are that you survived an event that you ended up in ER! This must all feel so surreal right now, having just recently learned what you have, and now beginning a new drug. Yes, you are brave, and you are so correct to learn as much as you can about your condition. It is a blessing to be as healthy as you are. That is going to help you so much going forward. This group and the Camzyos group are absolutely awesome HOCM warriors! So welcome, again, and feel free to share with others how things are going. Do you know your EF and LVOT numbers so you can measure progress? When do you see your cardiologist again? Do you have a contact person that you can reach if you have questions or concerns?

I was diagnosed with symptomatic obstructive HCM in May 2023. I’m under the care of UCSF and very grateful they took me on as a patient. As a very active nearly 69 year old woman who has always been ‘healthy as a horse’ it has been a huge adjustment. It took two ‘perfect storms’ - as my N.P. calls them - that ended me up in the ER by ambulance (in Jan 2023) to then get referred to a specialty clinic at UCSF for followup testing and diagnosis in May 2024. I’m starting Camzyos today. Trying to be brave and learn all I can. I have concern for my kids who may also have inherited the gene. Very glad to have found this support group.

Hello Suzanne @shampoou, I'm glad you found the Hypertrophic Cardiomyopathy group too. Welcome! There are many different topics here under the Hypertrophic banner, and I hope you are able to take a poke around at some of the topics on the list. How long have you known you have HCM? Is your doctor well versed in treatment of this disease? What are some of your concerns about the way HCM affects your life?

Hi im suzanne and im glad i found this group

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?

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

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.

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.