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I went back and found my original post here is as you tell from the date I did make it 🙂
Aug 7, 2015 · I have Hypertrophic Obstructive Cardiomyopathy and SAM and a ICD implanted
I have Hypertrophic Obstructive Cardiomyopathy and SAM and a ICD implanted have had the myectomy surgery and have had my mitral valve repaired. after a year went and had a echocardiogram and the MR is back to severe. the first surgery went well but was a couple of days coming off the respirator. the second for the valve repair i spent 11 days intubated in a chemical coma now they want to install a mechanical valve. what do you think my chances are this time.
Liked by Kanaaz Pereira, Connect Moderator
Welcome back, @rmcmillan; I'm thrilled to see you return!
May I ask if I'm correct in noting that the information you've shared in these recent posts – "I have Hypertrophic Obstructive Cardiomyopathy and SAM and a ICD implanted have had the myectomy surgery and…" – is your copied post from 2015?
I can imagine a lot has happened since then, and we'd love to hear about your experiences – what worked, what didn't – and any questions or tips you'd like to share. It sounds like you had an accomplished surgeon; how did you find him/her?
Thank you, @lina2017.
Hi @sankarpinaki,
Here's some information about Charitable Care and Financial Assistance at Mayo Clinic:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.
I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.
The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.
I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.
Here is to hope of new and invigorated life!
Liked by Kanaaz Pereira, Connect Moderator
You will do fine. I had a miraculous recovery. I was blowing snow six weeks out. Best decision I ever made. Dr. Schaff did mine.
Liked by Kanaaz Pereira, Connect Moderator
Hii I'm from India ..my son was diagnosed with HCM in 2011.. recently he had his 3 rd heart surgery for Arch repair and SAM resection at Kokilaben hospital Mumbai.if u want any other information plz let m know.
Liked by Kanaaz Pereira, Connect Moderator
Welcome to Connect, @keyster1976. Thank you so much for sharing your information and your concerns. We have some incredibly informative conversations about septal myectomy on Connect, where fellow HCM-ers have shared their insights and experiences about this procedure. Here are two that you may wish to view:
– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
– Diagnosed with HOCM last year. May be time for surgery https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
@janicepike, thanks so much for your encouraging reply; I'm also tagging @lynnkay1956 @nightlite8 @cynaburst @ronaldpetrovich @vivian88 @mbcube @lamborama @PatMattos @wintergirl8 @Sensation @lepadelford; many of them (if not all) have had surgery, some recently and some a while ago.
@keyster1976, what concerns you the most about the procedure?
I guess the biggest fear is death. But from what I have read the chance of that is very low. I also want to just know if we are going to do the septal myectomy. I have to wait to wait till 4-2 to know. And last everyone is talking about 2 surgeons and that is not who my consult is with does Dr. Said do the septal myectomy as well?
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.
@mbcube
I found there are 2 types of cardiologist – The "know it alls" and the curious.