About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (28)

Nov 10, 2018 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

Normal to be nervous. Fully understand. Having 20+ operations myself, the one thing I've learned is trust that you are in good hands – and there is no better place than Mayo. Listen to what they say, follow directions, ask questions. I find the more you know what to expect, the less "surprises" you get. I suspect you'll be posting afterwards – "easy peasy"

Sep 22, 2018 · HCM CARE tips - What do you wish you had known for after surgery? in Hypertrophic Cardiomyopathy (HCM)

Like HCM, everyone is different. I find that those that are otherwise healthy, active, and in shape will have a shorter recovery than someone who isn’t. For me, I was a 50 year old gym rat who exercised 1-2 hours a day. I had no complications (in hospital or at home). I went back to work full time at around 7 weeks. Mainly due to boredom. It’s important to rest, sleep, walk and do your breathing exercises. Once Home, I took walks 3 times a day, first just to the mail box, then to my neighbors mail box, then a few houses, a block, several blocks (you get the picture). Careful not to overdo it. There will be days you can do more, and days you will do less. If, after a good day & you’re exhausted the next day, you over did it.
Listen to your body.

May 11, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

One bit of advice – General medical websites tend to paint a very scary picture of HCM. Please go to the links that Cynaburst mentioned as they are experts and can give you honest, practical and patient-focused advice. Please understand that HCM is now estimated to affect 1 in 250 people. 80% of the population with HCM does not know it, and will likely not know it as it doesn't affect their life enough to warrant a doctor visit. With proper care – folks with HCM live just as normal and long a life as the general population. And its really key to be seen by someone experienced with HCM treatment. Even in large cities with excellent healthcare systems, very few cardiologist have no more than a handful of patients – and this isn't enough for them to learn about the fickleness of this disease. At places where the focus is on HCM, they are often a sub-set clinic within an existing medical center (Like Mayo's) and the majority of their clients have HCM or one of its similar genetic conditions.
There is a lot to learn and it may seem overwhelming at times – I often say "that you've have had HCM your entire life and you really don't need to focus 100% on it" – take your time, ask questions, vent, share and know you have a good support system here.

Mar 30, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Angelo – An AICD at your age is not a big deal. But I wonder why now and not 4 years ago? New Doc? Did you have a Holter or other test/device that monitors your heart that showed issues? As for the ASA (alcohol septal ablation). Its not always as simple – as you have to have just the right anatomy for it to work. Many interventional cardiologist (the standard kind) prefer to do these, but if they are not expert HCM doctors, It may not be as effective as it should be (but they will rarely admit to this). If you are not being seen at a HCM Center of Excellence, its worth the effort. There, they look at what will work best for you (either a Myectomy or ASA).

Mar 14, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

That sounds like a lot – How old is he? I'm not clear on your term Arch Repair. Could you provide more details??

Mar 14, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit, I scheduled my surgery as well as I knew I was a candidate. I was hoping for an alternative treatment, but it wasn't in the cards. The surgery group is a bit "detached" from the HCM clinic in that they do other heart surgeries. I've not heard of Dr Said, but I can assure you he's likely very competent. He may even be the main surgeon with Dr D or Dr S observing/assisting. Or pehaps he does the evaluation and his comments/observation is sent to the other known doctors – not sure. This is a question to ask when you are evaluated. Have you looked him up in the Physician biographies? If not here is a link: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
And yes, the risk is low (at a COE). I've drafted an article "so your having a myectomy" that is based on my 3 visits and myectomy surgery. Essentially its a what to expect, helpful hints (for you and your family), general orientation of the Mayo process. It should be completed soon, and I will post it.

Feb 27, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

I doubt anyone here could give you chances – But, you have a lot of issues going on. Where and when did you have your surgery? How long between the surgeries? Have you gotten a 2nd opinion? (hopefully from a surgeon & not someone online!)

Feb 27, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

I found there are 2 types of cardiologist – The "know it alls" and the curious.