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 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?

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!

REPLY
@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

Many of us travel to see HCM experts in other places. I travel all the way from Los Angeles to Rochester, MN to be seen at Mayo Clinic. I also have a local cardiologist who consults with my Mayo cardiologist about my treatment. In a perfect world, they will work together to help you get the best care.

REPLY
@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

As fellow patients, we are not qualified to tell you whether your medications are appropriate. You really need to consult with a physician well versed in HCM. I believe that there is a HCM Center in India. This hospital has expertise in HCM. They have a designated HCM Center there named after Barry Maron who is a pioneer of HCM medicine in the U.S. Maybe you could travel there:

https://kalrahospital.com

REPLY
@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 very much. I have decided to go there but some time in the month of October. The place is far away from where I live and expensive too. Please continue giving suggestion to me. Once again thank you.

REPLY

Hi

REPLY

Hi say something about you

REPLY
@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

Ask your new doc in Scottsdale if they know of a local "associate" in Tucson. They can work together in your care. Another option is to ask your Insurance Co for a list, sometimes its online or in PDF form, but look for cardiologist that is newly minted. They are still in the "interested and learning" phase and eager to work with experts in areas they may be interested in. Usually an email to them (or call) will let you know if there is any interest. Good Luck!

REPLY
@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

 Hi, I I'm traveling this morning but should be able to respond to your message early afternoon.

Thanks, Mark

REPLY
@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

Thanks so much/ interesting angle I hadn't thought about: looking for local cardiologist who's still interested in learning & working w experts

REPLY
@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

Hi @jillie,

Welcome to Mayo Clinic connect; we're so glad you've joined us! Here's a patient and visitor guide from Mayo Clinic that has some great information with links to many resources: https://www.mayoclinic.org/patient-visitor-guide
If you call the AZ campus http://mayocl.in/1mtmR63 they will help plan your visit to make it as efficient as possible. Did you know that they even have free travel services? @gailfaith can tell you more about that.

I'd sincerely encourage you to view the "Visiting Mayo Clinic" group, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ on Connect; feel free to scroll through the discussions, and join in any conversation that might help answer your questions.

May I ask what the next steps are in your treatment plan, @jillie?

REPLY
@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

Hello @sankarpinaki,

Thank you for reaching out to the Connect community with your information. I hope you are able to follow up with Mentor @cynaburst's suggestion. I am from India as well, and wanted to recommend two other options – one in Kolkata. Both are big institutions, ranked well in their management of HCM, and you've probably heard about them:
– Apollo Hospital (Kolkata): http://apollogleneagles.in/heart.php
– Fortis Health http://www.fortishealthcare.com/india/diseases/cardiomyopathy-553

@neha4, would you have any guidance or insight that might help @sankarpinaki ?

REPLY
@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 for being so kind to me. I will surely follow the links. I had been to Apollo kolkata but the visit was futile. Docs are more interested in treating CAD. However kolkata is viable to me .whom shall I consult there for that I need guidance. I am really suffering. I am planning for Delhi but a few months later!but kolkata I can avail in a month or so. Thank you dear friend.

REPLY

Hi @loyo,

Welcome to Connect. I see that you posted an empty message; did you mean to post something more, or reply to a member's post?
If you would like more information on how to use Connect, you can find it here: https://connect.mayoclinic.org/get-started-on-connect/

@loyo, what brought you to the HCM discussion in the Heart & Blood Health group?

REPLY
@kanaazpereira

Hello @mollybo,

Welcome to Connect; thank you so much for sharing your mother-in-law’s information. Before anything else, I’d like to reassure you that she is in the best hands at Mayo Clinic which is ecognized as one of the top Cardiology and Heart Surgery hospitals in the nation. Here’s some information about hypertrophic cardiomyopathy care at Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what your mother-in-law is experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones’ experiences.

You may also wish to view this discussion – “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/, where you will meet @tkterrell @choochoo @debcrawford @daisygirl @quinn @lina2017 @lynnkay1956, and Mentor @cynaburst talking about HOCM.

@mollybo, it can be so stressful when loved ones have health problems, and we naturally feel a sense of urgency to get them the necessary treatment. While we wait for @cynaburst and fellow members to respond, I’d encourage you to read a bit about the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/hypertrophic-cardiomyopathy-clinic/overview, and keep talking and asking questions – the Connect community is listening.

Jump to this post

Hello! Do u still have any problems after ur surgery?

REPLY
@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 ,My husband had the surgery 6 months back.We did the surgery at Mayoclinic.He is doing great by the grace of God.
I am orginally from southern part of India now living in the US. I know its hard to find HCM experts in India.I am glad to help you if you need any informations regarding the sugery and diagnosis i can help you .Hope you can find some experts soon..

REPLY
Please login or register to post a reply.