1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page. 

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

sankarpinaki | @sankarpinaki | Feb 27, 2018
In reply to @lisalucier "Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the..." + (show)
@lisalucier

Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the rest of your post may have been missing after "hi"? Interested to hear the rest of your message.

Jump to this post

Hi, got ur message. can you tell me how can I avail the treatment at Mayo clinic with the help of any charitable organization for an average Indian like me .

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 28, 2018
In reply to @jillie "Hi All, So happy to find you! I'm from Tucson and have been diagnosed locally with..." + (show)
@jillie

Hi All, So happy to find you! I'm from Tucson and have been diagnosed locally with asthma for 15 years. I was always very physically active (swam 1 mi/ day) and couldn't understand why in the last few years my SOB kept getting worse and my inhalers provided no relief. At the same time I was a 6 yr caregiver for my late hubby and so whenever I complained about increasing SOB, my Tucson cardiologists wrote it off as caregiver/ death of spouse stress and anxiety. You know: Learn biofeedback. Meditate. Relax. Breathe deeply. Think happy thoughts.
I just went to Mayo Scottsdale for my annual physical and my PCP there had ordered every test known to man when she noticed that I was SOB from just changing into my gown. Echocardiogram findings are HOCM. I drove the 3 hrs back to Tucson in semi-shock. Next week I have lots of appointments, including my 1st bonafide cardiologist consult at Mayo and of course my wrap-up with my PCP. I've been actively researching HCM online and it certainly fits all of my symptoms.
I have seen 2 terrible cardiologists in the past in Tucson (who basically blew me off) and so I want to definitely continue at Mayo. But I have no clue how to live in Tucson and be treated at Scottsdale---it's a 3 hr drive. I have no family here.
Anyway, maybe TMI but I'm so happy to have found you! Thanks for being here!

Jump to this post

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?

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 28, 2018
In reply to @lisalucier "Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the..." + (show)
@lisalucier

Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the rest of your post may have been missing after "hi"? Interested to hear the rest of your message.

Jump to this post

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

REPLY
sankarpinaki | @sankarpinaki | Feb 28, 2018
In reply to @lisalucier "Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the..." + (show)
@lisalucier

Hello, @sankarpinaki -- wanted to add my welcome to Mayo Clinic Connect. I believe perhaps the rest of your post may have been missing after "hi"? Interested to hear the rest of your message.

Jump to this post

Hi, i have read the link but international patients are not covered under charitable schemes. can u inform me further about how can I avail such facility.

REPLY
keyster1976 | @keyster1976 | Mar 12, 2018

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!

REPLY
12 replies
janicepike | @janicepike | Mar 12, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

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!

Jump to this post

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.

REPLY
neha4 | @neha4 | Mar 14, 2018
In reply to @sankarpinaki "Hi say something about you" + (show)
@sankarpinaki

Hi say something about you

Jump to this post

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.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 14, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

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!

Jump to this post

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?

REPLY
keyster1976 | @keyster1976 | Mar 14, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

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!

Jump to this post

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?

REPLY
mbcube | @mbcube | Mar 14, 2018

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.

REPLY
4 replies
View MoreView Less
Please sign in or register to post a reply.