Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7185
Joined: Jul 23, 2014
HCM-ers: Introduce yourself or just say hi
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 
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?
J bron
@rmcmillan
@rmcmillan
Posts: 4
Joined: Aug 08, 2015
@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!
Hello just received 5 emails from this thread. so Hello
J bron
@rmcmillan
@rmcmillan
Posts: 4
Joined: Aug 08, 2015
@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!
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
J bron
@rmcmillan
@rmcmillan
Posts: 4
Joined: Aug 08, 2015
@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!
I had a real fine surgeon young and steady hands
Liked by Kanaaz Pereira, Connect Moderator
mbcube
@mbcube
@mbcube
Posts: 28
Joined: Oct 25, 2016
@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!
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!)
sankarpinaki
@sankarpinaki
@sankarpinaki
Posts: 19
Joined: Feb 22, 2018
@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.
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 .
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2302
Joined: Oct 09, 2016
@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!
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?
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2302
Joined: Oct 09, 2016
@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.
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
sankarpinaki
@sankarpinaki
@sankarpinaki
Posts: 19
Joined: Feb 22, 2018
@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.
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.
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
janicepike
@janicepike
@janicepike
Posts: 45
Joined: Oct 21, 2016
@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!
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
@sankarpinaki Hi say something about you
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
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2302
Joined: Oct 09, 2016
@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!
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?
@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!
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?
mbcube
@mbcube
@mbcube
Posts: 28
Joined: Oct 25, 2016
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
In reply to @jillie
I found there are 2 types of cardiologist – The "know it alls" and the curious.