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 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.

rrowner2 | @rrowner2 | Mar 2, 2020

Hi there, My husband had septal myectomy at Mayo in Rochester Dr Schaff was his surgeon. He was diagnosed with HCM at 43 and was 74 when he had the surgery. Despite the ever increasing symptoms was still quite active. Earlier in the year he had a complete heart block and had a pacemaker/ defibrillator implanted, his HCM became obstructive to the point of several episodes of syncope. His cardiologist in San Diego recommended Mayo but we had done lots of research so Rochester it was.
His surgery went well was in hospital for 4 days traveling home 2 days later.
I think he will now acknowledge how sick he was and how amazing he has felt since.
I’m a former nurse so was worried about his recuperation, but he was fine took about 6 weeks to resume normalcy.
One thing I don’t see mentioned on this site is the emotional effect of open heart surgery my husband had several days of depression so be aware and get help for that.
Wishing you all the positive thoughts in the world
Maureen

mosaic | @mosaic | Mar 2, 2020

In reply to @karukgirl "Dear Mosaic, I'm grateful to you for your response, and so sorry that you had so..." + (show)

and I wish you well. Choosing Mayo is an excellent choice as long as you are aware that things can go wrong, I am glad you have an effective advocate on your side! I recovered!

Debra, Volunteer Mentor | @karukgirl | Mar 2, 2020

In reply to @colleenyoung "Welcome to Mayo Clinic Connect, @karukgirl. You ask some great questions as you get ready for..." + (show)

Hi Colleen,
Thank you for tagging, pinning and pointing me in so many great directions. Reading on here of the grit, determination, the pitfalls and challenges of others with HOCM has been very informative to me and others I am sure. I lurked out there, not being one who likes to share or step into the spot light so to speak, but I really wanted to know information from the ones who've gone before me. I appreciate you stepping in and taking me on a guided tour. I've been most of these places, but it never hurts to read it again. I'm a voracious internet researcher. My goodness I have bookmarked probably a hundred sites by now. All good information and taken together along with this group has helped me tremendously to face the toughest thing I think I'll ever do. And hope I never have to do again! The unknown is what makes facing something like this so challenging. And being able to hear from real people who actually when thru this is a real benefit. Thank goodness for Mayo Clinic, the internet and modern medicine 🙂
I have emailed Dr. Bagameri's administrative assistant with a list of questions, which I knew need to be addressed medically...such as when to stop my once daily Advil, or when to give up my nightly wine with dinner ritual, do I need cardiac rehab and when to begin. Things like that. She told me she would have those answers today, Monday March 2. With my surgery looming ever closer I am still kind of in denial. Maybe that's a good thing. I tend to stress about things when I can't control them. This being one!
Like Ron Petrovich, I work in a hospital too. I am not a nurse. I am an ICD10 coder. So we are educated clinically, but without the nursing program. I've worked in hospitals for over 40 years. All over this State. And I have to say I have NEVER seen a more efficient, organized, clean, and actually pretty place as the Mayo Clinic. I only briefly saw St. Mary's when I consulted with Dr. Bagameri, but what I did see was like the downtown campus. Clean. Organized. Efficient. I am not looking forward to this event, but I have extreme confidence in my choice to go with Mayo Clinic. I was certain my insurance would not allow for this. Hello out of network rules. But BC/BS of Texas (my hospital's corporate headquarters is in Dallas, so even though I live and work for California based hospital, we all have Texas insurance) they told me Mayo is considered a COE (center of excellence) and was not only in network, but was a Premiere Provider and I was approved quickly and easily. That was a load off my already full plate!
Thank you for you kind response and for the tags and suggestions. I will certainly check them out. Again 🙂
Best regards

lailaamin | @lailaamin | Mar 2, 2020

In reply to @karukgirl "Hello from far Northern California, I have been silently stalking this group for several months, trying..." + (show)

@karukgirl

Hello from far Northern California,
I have been silently stalking this group for several months, trying to get a feel for how others deal with their diagnosis, treatment and surgery. I am scheduled to have a septal myectomy on March 20th at Mayo/Rochester with Dr. Bagameri and Dr. Dearani. To say I am nervous would be an understatement. I'm not at the "freaked out" stage yet...that probably happens like the night before or morning of. So I have three weeks to pack. This is an unusual trip to pack for and I'd like to hear from others if they have any handy tips or things they wish they had brought and didn't or vice versa. They say it's a 5-7 day in-house stay, and I have a battery of tests plus a cardiac MRI scheduled for Wednesday and Heart Cath on Thursday. Did anyone have the heart cath and end up staying in because their surgery was the next day?
Like many others I didn't know I had this until about 5 years ago when I developed random symptoms that progressed to the point where I could no longer hike (We have many mountains here and I've hiked them all) walk (We have a beautiful 6 plus mile river trail that I walked daily), for ten years I did ballroom/swing dance classes and dancing but could only last about 30 seconds now. I also noticed that I was extremely fatigued. Like exhausted when I woke up. Nodding off during work (Thank goodness I work from home) and have been having a really hard time concentrating. Like "brain fog" I've seen mentioned here. I have a very detail oriented job and have some bad performance appraisals the past two years. It makes me mad and sad. I was minding my own business and what feels like suddenly...my world changed. I'm not feeling sorry for myself, it actually feels good to know that others out there are like me and feel the same. After all these five years, I was only recently correctly diagnosed with HOCM and maybe Subaortic Membrane. Yay! Two things! It took a trip to Cedars Sinai in Los Angeles and another trip to Mayo Clinic for second opinion. I sat in the chair, numb, when Dr. Evans said I needed surgery, and sent me straight to Dr. Bagameri. He confirmed. I was stunned, shocked, numb and in denial. That was three months ago, so I have had a LONG time to process this. I've gone down some dark roads with so much time to think about this surgery. Death. Stroke. Infection. Pain. And now the PICS. Post Intensive Care Syndrome. Sigh. Will I recover? Will I recover enough to perform my job when it's all said and done? God only knows these things.
Oh, for the record, I am adopted, just turned 62 three weeks ago, zero health issues other than my new friend HOCM. Beta blockers didn't like me or me them. Calcium channel blockers are not cutting it. Gradient pressure over 60, severe MR and SAM.
Oh, sorry, I digress. What I REALLY wanted to know is if there are folks out there in the Group that have some great tips for those of us who have been stalking you, (and maybe still are) and who have surgery coming up. You're the pros. You've been through it. You are battle tested. Each recovery is as individual as the individual, but there is probably some commonality that ties us together in recovery.
If you drink wine with your dinner every night, did you stop before surgery? When?
Did you bring your own pillow?
Take your own robe and leopard print slippers? Wear a bra?
Forget your chap stick or reading glasses. Bring something to read? Bring a laptop?
What about your people? The ones who anxiously wait in the waiting room. How did they pass their time? How did they get thru this? Any favorite restaurants near St. Mary's they hung out in? Were they able to stay with you as long as they wanted?
When you got home, what did you not have that you wished you had? Did any of you NOT do what you were supposed to do and have complications? Can you sleep in a non-recliner chair? Prop yourself up in bed? What did you need the most?
How about the flight home for those who come from afar. Any tips for surviving the flight? Or as in my case we have a 3.5 hour flight from MSP to Sacramento plus 2.5 drive north. Is it realistic? Ambitious?
They say most every patient suffers some depression post op, how did you deal with it, if it happened to you? Did you set goals for each day? Like everyday I will shower and walk to the mailbox 6 times. How did you take care of your sternal wound? Any tips for us newbies? What was the worst part of this experience? What surprised you the most? How did this change your life? Did anyone go crazy because they couldn't drive? Or lift anything? Do you have a good suggestion for clothing post op? Can you slip something over your head or did you have to resort to open in the front things? Did sweat pants become part of your daily wardrobe? What about shoes? I read your feet swell after surgery so what kind of shoes did you wear out of the hospital or for the trip home.
Well, it seems I have typed quite a large post. It's a daunting task that lies ahead: survive major surgery. That's my first goal. Then recover. That's my second goal. Survive and recover, but with Grace. So thank you if you read this far, and thank you for any tips you can pass along to an anxious soon-to-be patient.

Jump to this post

I do not like the recliners either I have just recently sold mine since it was only a few months old but it made my recovery so much easier. The surgery and postop it’s not easy but it’s well worth it and like I said before you are in the best hands in the country

Debra, Volunteer Mentor | @karukgirl | Mar 3, 2020

In reply to @lailaamin "I do not like the recliners either I have just recently sold mine since it was..." + (show)

Well, after all the recliner, recliner, recliner talk...I broke down and we purchased one from our local Lazy Boy. It's an "electric chair". Just what I need I suppose. I think after I've gotten what I need from it I will pass it along to my 92 year old dad. He'll get a kick out of it.
Thanks for your response. That's one more thing I can check off my list! Best Regards

mosaic | @mosaic | Mar 3, 2020

In reply to @janemiracle "My daughter diagnosed with HOCM wants to do masters in the US during 2021. What is..." + (show)

Most universities offer health insurance for international students. You need to get a copy of the policy and read its limits, including the amount of deductibles, copays, and what is covered and not covered, including pre existing conditions. Please do not rely on what a college admissions officer says. The insurance policy is a contract and will control what is covered. Each policy is different. Welcome to the US, where health insurance and care is a nightmare!!

jmiracle | @janemiracle | Mar 3, 2020

My daughter diagnosed with HOCM wants to do masters in the US during 2021. What is the kind of medical insurance would she need ? I hear that the medical insurance does not cover existing illness. Can some one advice please ?

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 3, 2020

Hello @janemiracle,

I moved your message to this discussion so that people could read more of your post to help with your question about insurance. Simply click VIEW & REPLY in your email notification to find your post.

At most U.S. universities, health insurance specialists are usually available to advise students about their options. Health insurance policies and costs can vary quite a lot, and requirements may also depend on your daughter’s visa category.
Here is an article with some more information: https://www.usnews.com/education/best-colleges/articles/2019-02-12/what-international-students-should-know-about-health-insurance-in-the-us

@janemiracle, when was your daughter diagnosed? How has she been managing her condition?

riderwayne | @riderwayne | Mar 4, 2020

Hi Wayne here .I live in Ontario Canada and have HCM. So happy I found you and feel I have people I can relate to. I am in need of a total knee replacement and Dr.s are worrying me with the risks.

bbonchek | @bbonchek | Mar 4, 2020

In reply to @riderwayne "Hi Wayne here .I live in Ontario Canada and have HCM. So happy I found you..." + (show)

Hi Wayne
I have HOCM and had a total knee replacement in august 2018. My docs knew of my heart condition and my surgery was in a larger hospital with good cardiac support.
All went well.
I was very glad to get it done and out of the way
Good luck

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