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?

I totally agree-good call. "No wine before its time…" Be at peace with your very good decision and be ready to proceed when the situation swings back in your favor.

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@karukgirl

Well, just like I didn't see HOCM or Open Heart Surgery in my future, and just when I believed I had accepted the plan…COVID-19 mass hysteria manifested. Didn't see that one coming. So yesterday, literally, 8 hours before our trip to Sacramento International, we made a decision to cancel. I felt deflated like a balloon. After the US Surgeon General, Dr. Adams, was urging hospitals to cancel all non-emergent cases, and then met with the leaders in AHA and President Trump urged state Governors to urge hospitals to cancel cases, I wondered if mine would be cancelled. It was to be this Friday, March 20th. Then all the shut downs started in our State. And the talk of the chance of domestic travel restrictions from certain areas. Probably California, although we are in Northern California and not like the rest of the state. I communicated with Mayo Clinic Cardiovascular Dept. yesterday and they completely understood, so we are scheduling another surgery in the next 8 weeks or so after this virus loses power. I can't describe how stressful it's been, but I am not in control. God is. Trusting is my job. He has the rest. Thank you for all the great support, thought I'd give an update. I also have a little "cold" right now so really all the signs were there, and cancelling, though a difficult decision, seems like the right thing to do. Probably a bad idea to have open heart surgery and be traveling during a global pandemic, which looks to peak when I would be coming home, during massive shutdowns, travel advisories, and public hysteria. Looks like I get to stay on the rollercoaster longer!

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Hello @karukgirl,

At a time when life isn’t normal in any sense of the word, I think your decision to postpone the surgery is commendable. I can imagine it’s a hard choice, but look at it this way: you’ve taken significant steps towards “flattening the curve."
By following current guidelines, you are allowing doctors and your health care team to prioritize and make the best use of medical resources for the more critically ill patients, and you are reducing the risk of coronavirus spread––patients who’ve had surgery are more susceptible to infections.

Still, knowing you have a condition that needs to be fixed and can be fixed, but not at the time it was scheduled to be fixed, can be incredibly stressful! Have the doctors explained whether postponing the procedure will or will not affect the ultimate outcome?

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@yurkosolhan

I totally agree-good call. "No wine before its time…" Be at peace with your very good decision and be ready to proceed when the situation swings back in your favor.

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Thank you kind Sir,
I feel better today about making the decision to postpone…it seems like things get a little worse everyday. Although the media appears to enjoy watching the panic in society. The world has gone mad! The sky is falling!
Hopefully when we get the official new date, there will be toilet paper available once again 🙂
I was more concerned about all the wineries being closed, so I stocked up on Chardonnay!
Thank you for your vote of confidence…I second guess myself all the time. It feels good to get confirmation. Meanwhile, the waiting game continues…

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@kanaazpereira

Hello @karukgirl,

At a time when life isn’t normal in any sense of the word, I think your decision to postpone the surgery is commendable. I can imagine it’s a hard choice, but look at it this way: you’ve taken significant steps towards “flattening the curve."
By following current guidelines, you are allowing doctors and your health care team to prioritize and make the best use of medical resources for the more critically ill patients, and you are reducing the risk of coronavirus spread––patients who’ve had surgery are more susceptible to infections.

Still, knowing you have a condition that needs to be fixed and can be fixed, but not at the time it was scheduled to be fixed, can be incredibly stressful! Have the doctors explained whether postponing the procedure will or will not affect the ultimate outcome?

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Hello,
Thank you for your response! You are correct. It was super stressful making the decision to postpone. I was packed and as ready as I ever would be to go. That was Monday, here we are today Wednesday, and the White House is strongly urging all hospitals to cancel elective, non-emergent surgeries. So it was the right choice. Things change hourly it seems! I do feel like it was the right thing to do and listen to what the President is urging ALL Americans to do…to cancel all non-essential travel, stay home if you can, and not to lose hope or freak out. We will get through this.
I recognize that I would have been consuming a large amount of intensive services, using lots of PPE and taking up space that an unplanned critical patient may need. That is a greater cause.
The Mayo cardiologist I saw, Dr. Titus Evans, suggested to me that although I have a pretty big obstruction, that I am not critical, and to schedule as soon as was possible. I don't think anything has changed since he told me that in December, heart-wise, so I'm not afraid that postponing until July or August will risk my life. But I do think having open heart surgery during a Global Epidemic would!
As you mentioned, patients who've had surgery are more susceptible to infection. And it seems this is a highly contagious bugger.
I have not yet heard back from Dr. Dearani's scheduler, as he will be the "co-pilot" for my septal myectomy. Dr. Bagameri will be the pilot. This will happen when it happens. I'm so grateful to this community. Who but those who share this condition or have had surgery know what it's like?!
I feel like my issues are so insignificant compared to the suffering of others. It's easy to put things into prospective because this isn't all about me…this is an unheard of time in history. And we can and will overcome, it will take time and patience. I pray for the doctors, nurses, all healthcare workers, police, military, EMTs, all those who serve and protect us. Thank you for thinking of me.

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Hi, I joined last year but have been slow about introducing myself. I'm 63 years old, diagnosed with HOCM May of last year. I retired the end of May, had it planned and notice given prior to diagnosis. i see cardiology every 6 months due to moderate to moderate to severe mitral valve prolapse and electrophysiology yearly since I had SVT when I was diagnosed. I've made some healthy lifestyle changes, and echocardiogram didn't show any changes in six months. Now that Cocid-19 is here I find I have more time to go to the forum, and find it helpful. Thank you for this online community.

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Hi, thought I would take a moment and introduce my self. I was a long time HCM patient at Johns Hopkins in Baltimore. Key people in that program left to go elsewhere about the same time I had to move away from Maryland. Now I make my home in St Cloud, MN and I am happy to be a recently established patient at the HCM clinic at the Mayo Clinic. I had a myectomy surgery in 2010 and also have an ICD.

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Hello @d1956 and @doug57 — Welcome to the HCM group here on Mayo Clinic Connect. I would like to introduce you to some other members who have also been diagnosed with HCM, like @karukgirl @ronaldpetrovich @PatMattos @lisa7 @yurkosolhan @bbonchek @lailaamin @mosiac @rrowner2 @mbcube @debcrawford

@d1956 Retirement keeps one busy doesn't it? I'm glad that you took the time to introduce yourself. Can you tell us more about the lifestyle changes you made?
@doug57 Welcome also to MN and Mayo Clinic. How do you like living in the midwest? Do you have any questions about HCM Clinic at Mayo?

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I started avoiding processed foods, sugar, flour, white rice. Bought a fit bit to keep track of my steps, and started walking on a treadmill, gradually increasing speed and incline. After retirement it was easier to eat right and exercise, and I focused on getting my 10,000 steps in. I now walk at a 7.5 incline at 3.0 miles per hour, do 30 min to 60 min on treadmill daily depending on how active I am, always try to get that 10,000 steps in. 3 months ago I started doing yoga on line, and presently am on a 30 day challenge with Adriene (who is my favorite so far) I've lost 30 lbs and now weigh 135. I'm 5'6". I have a horse and ride a lot, I have been told this is not a good idea due to Eliquis, but I've told my PCP and cardiologist that I understand the concern but I accept those risks as I'm no longer competing, I'm not doing high risk activities with the horses and my horse is very solid and well trained. Getting outside and riding has helped my sanity and I live in a rural area. I've been cooking and trying out healthier recipes and really watching that salt intake. I weight daily and have prn Lasix for 3 lb wt gain, but have not had to use it. I think that the daily weight and recording that weight has helped keep me on track more than anything as it keeps me accountable before things start to spiral. I also feel better than I did a year ago.

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@d1956

I started avoiding processed foods, sugar, flour, white rice. Bought a fit bit to keep track of my steps, and started walking on a treadmill, gradually increasing speed and incline. After retirement it was easier to eat right and exercise, and I focused on getting my 10,000 steps in. I now walk at a 7.5 incline at 3.0 miles per hour, do 30 min to 60 min on treadmill daily depending on how active I am, always try to get that 10,000 steps in. 3 months ago I started doing yoga on line, and presently am on a 30 day challenge with Adriene (who is my favorite so far) I've lost 30 lbs and now weigh 135. I'm 5'6". I have a horse and ride a lot, I have been told this is not a good idea due to Eliquis, but I've told my PCP and cardiologist that I understand the concern but I accept those risks as I'm no longer competing, I'm not doing high risk activities with the horses and my horse is very solid and well trained. Getting outside and riding has helped my sanity and I live in a rural area. I've been cooking and trying out healthier recipes and really watching that salt intake. I weight daily and have prn Lasix for 3 lb wt gain, but have not had to use it. I think that the daily weight and recording that weight has helped keep me on track more than anything as it keeps me accountable before things start to spiral. I also feel better than I did a year ago.

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I really enjoyed reading all the positive things you,ve done, probably bcuz after leaving corporate I followed a lot of these same steps. Very refreshing .

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Hi every one nice to meet yall here.

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@jaguar737

I really enjoyed reading all the positive things you,ve done, probably bcuz after leaving corporate I followed a lot of these same steps. Very refreshing .

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Thank you, I appreciate that!

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Hi…I can't remember my name of this site….

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@falconfly

Hi…I can't remember my name of this site….

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I have HCM and Afib….I have all sorts of skipped beats, hard heart beats, fast beats, fluttering etc. I can't tell which is which. I only get to see heart doctor once a year and also an echo cardiogram, but this year will just be a phone call chat. I'm on Eloquis, lisinopril, metoprolol 100mg 2x day. I'm having a hard time distinguishing which is causing the problem that I'm having to try and explain it to him when he calls.

Liked by angiev18

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Hello. New to the Mayo connect. Previously my dad had an echocardiogram done (51 years of age in 2000) because of 30 years of uncontrolled high blood pressure… that doctor suspected LVH then. Fast forward to 2017, my dad has his first bout of Afib and a full cardiac work up is done. The MRI radiologist suspects HCM and refers him to a larger cardiology group in our state. My dad has no known family history of HCM, but had the 30 years (age 20-50) of uncontrolled high bp. The cardiologist wasn’t convinced either way (bp related or HCM) so he was referred to a genetic cardiologist who ran some tests. No known mutations were found. I had an ekg, stress Test and echocardiogram done when I was 28 (7 years ago) because I had some really bad anxiety (didn’t know it was anxiety at the time) and everything came back normal. I have had a few ekgs since (all normal). My brother had an ekg done, normal also. I had been ok with my dads diagnosis as inconclusive but now it’s starting to worry me again (that anxiety!) mostly because I have a young son who is very active and I don’t want limitations for him. Do you think I need to press my to look into it more or trust that the high bp could be the culprit? Thank you.

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@estefania03

Hello. New to the Mayo connect. Previously my dad had an echocardiogram done (51 years of age in 2000) because of 30 years of uncontrolled high blood pressure… that doctor suspected LVH then. Fast forward to 2017, my dad has his first bout of Afib and a full cardiac work up is done. The MRI radiologist suspects HCM and refers him to a larger cardiology group in our state. My dad has no known family history of HCM, but had the 30 years (age 20-50) of uncontrolled high bp. The cardiologist wasn’t convinced either way (bp related or HCM) so he was referred to a genetic cardiologist who ran some tests. No known mutations were found. I had an ekg, stress Test and echocardiogram done when I was 28 (7 years ago) because I had some really bad anxiety (didn’t know it was anxiety at the time) and everything came back normal. I have had a few ekgs since (all normal). My brother had an ekg done, normal also. I had been ok with my dads diagnosis as inconclusive but now it’s starting to worry me again (that anxiety!) mostly because I have a young son who is very active and I don’t want limitations for him. Do you think I need to press my to look into it more or trust that the high bp could be the culprit? Thank you.

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Hi, @estefania03, glad you dropped in with us at Mayo Connect, making you and me a party of two facing similar problems. I tend to suspect that hypertension is the cause of your family's cardiomyopathy, because your dad's situation and mine are similar, and I'm a 45-year practitioner of antihypertension therapy.

I had some difficulty qualifying for a new life insurance policy back in 1974 because of high blood pressure, then began round-the-year medical therapy for it 10 years later (age 50). After 20 years of fairly ordinary medication, my new HMO took a good look at my heart and found asymptomatic hypertrophy (their diagnosis was LVH as well). Other symptoms emerged over a few years, and the HMO referred me to a nephrologist, because my hypertension seemed not to be mainly a heart problem that would be relieved with the old medical protocols. My nephrologist diagnosed that part of my problem is Liddle Syndrome, a genetic mutation of the kidneys causing them to slough off potassium, and she solved that with a potassium-sparing diuretic. Then the cardiology team started looking at my heart again. We ran through all of the popular tests, except cardiac catheterization, confirming my cardiomyopathy but deferring therapy for want of significant symptoms.

Along came atrial fibrillation about seven years ago. It felt asymptomatic, showing itself only on my EKGs and blood pressure readings. But standard therapy with A-fib calls for an anticoagulant to prevent blood clots. I chose Coumadin for two reasons: 1) it involves regular lab tests monthly and 2) there is a ready antidote for it in emergency situations. By good fortune, my A-fib has never rattled my chest or caused any discomfort there. But it hit me the other way — a small blood clot, apparently formed in my heart, blocked a capillary deep in my brain, causing a "small stroke." Physical therapy has helped overcome the stroke symptoms, and I feel rather normal now without any sense that my heart is working extra hard to overcome the resistance of the thickened ventrical walls.

My medication is different in only one respect now: I take Carvedilol, a beta blocker, to steady my pulse and ease the power my heart needs to drive blood out in my system. Otherwise, its Coumadin to prevent blood clots, my potassium-sparing diuretic, and Lisinopril, a kidney medication for my hypertension.

I once thought I'd relentlessly pursue a cure for the problems of my circulatory system, whatever the cost or the inconvenience. I long ago gave that up and developed plans for anticipating what might pop up and threaten me, so that I'll know exactly what to ask for at the emergency room if my wife ever has to call 911 over my heart problem. Life is a lot more calm and predictable, except for the coronavirus that's taking over now. Martin

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