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?

@archer

—Sincere thanks for the response. Will go tomorrow for the stress test.
—Another question, something brought up some months back: Does anyone take metoprolol? How much? My dosage is 50mg twice a day, and my symptoms have recently worsened. Wondering if it is at all common to have the dosage adjusted/increased?

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Hi, I have been taking metoprolol for several years..each year increased by 25mg…I'm now on 100 mg twice a day, plus 5mg of lisinoprol once a day. It has helped me and other docs I've been to say it is a good medicine. I have recently been diagnosed with Afib which I think has probably been a good share of my heart problems..anyway, he put me on a blood thinner Eloquist at $174.00 a month I pay after insurance!!!…So far I have chosen not to be on the coumadin which is far less expensive. Hope this helps…

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—Thanks. Your post does indeed help. My Toprol dosage is 50mg twice a day and Losartan 25mg once a day. Not sure why it is not Lisinopril (the ACE inhibitor). This, we are told, is fairly standard. My stress test is tomorrow afternoon. Really hope to survive it without my morning Toprol. Without it, there is usually continuous angina and unsteadiness. Have you ever had a stress test and had to abstain from the beta blocker? Again, sincere thanks.

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@archer

—Thanks. Your post does indeed help. My Toprol dosage is 50mg twice a day and Losartan 25mg once a day. Not sure why it is not Lisinopril (the ACE inhibitor). This, we are told, is fairly standard. My stress test is tomorrow afternoon. Really hope to survive it without my morning Toprol. Without it, there is usually continuous angina and unsteadiness. Have you ever had a stress test and had to abstain from the beta blocker? Again, sincere thanks.

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If you run into trouble on the test then stop. You are not expected to go beyond your limits.

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@archer

—Thanks. Your post does indeed help. My Toprol dosage is 50mg twice a day and Losartan 25mg once a day. Not sure why it is not Lisinopril (the ACE inhibitor). This, we are told, is fairly standard. My stress test is tomorrow afternoon. Really hope to survive it without my morning Toprol. Without it, there is usually continuous angina and unsteadiness. Have you ever had a stress test and had to abstain from the beta blocker? Again, sincere thanks.

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No stress test as I have had multiple schlerosis for almost 20 years and am in a wheelchair 24/7 and cannot stand. I only see my heart doctor once a year (wish it were a little more) and before he sees me he sends me down for an echocardiogram…Another doc put me on the Holter Monitor for 24 hrs and found the afib….I think they watch you very closely when giving the stress test and will take you off of it if you have any signs of distress….Be sure to tell them if you do….You will make it fine and hopefully it will give them more insight to your problem…

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—Thanks. Will dutifully take the stress test and will let them know of any difficulties. Will also send you a note here. —Sounds as though you have a fine system of care. My very best to you. Again, sincere thanks. Very kind of you to take the trouble.

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Please let us know how it goes and keep us updated on yourself…

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@timdines

If you run into trouble on the test then stop. You are not expected to go beyond your limits.

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Thanks. Will do.

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Hello. My name is Kurt, and I have recently been diagnosed with HOCM. I live in Birmingham, AL and have just been given an appointment to see Dr. Ommen and then myectomy with Dr. Schaff in October at the Rochester clinic. Seems like a long time to wait for surgery, as my symptoms have been progressively worsening over the past several weeks. Is a 3 month wait time typical? Thanks…

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Hi Kurt, I just had a myectomy a month ago and I think that is about the time frame I waited.

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@sheim

Hi Kurt, I just had a myectomy a month ago and I think that is about the time frame I waited.

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Thanks. Who did your surgery and how was your experience?

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My husband waited 3 months and Dr Schaff was his surgeon last October

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Dr. Schaff did my surgery six years ago this past January. I waited only a couple of weeks, but it was an emergency situation. He is truly a great surgeon and his fellows were first rate doctors as well.

Liked by Kurt

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@kurt_e

Thanks. Who did your surgery and how was your experience?

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Dr Schaff did my surgery and everything went really well. My only concern (and it has nothing to do with HIM) is the soft tissue swelling at the top of the incision. It's to my throat and I still have a bit of a problem swallowing and "tugging" at my neck. Even my doctor here at home says it will go down….I THINK it is starting to, If you're fortunate enough to have your surgery at St Mary's, the Cardiac ICU nurses are THE BEST. ALSO, if you are going to have cardiac rehab, find out how long you'll have to wait. Mayo suggested within 2 weeks and here they could not get me in until mid Aug. By then I won't even need it. It's been just 4 weeks and yesterday I walked over 3 miles already.

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I need info on PSP

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sylvia

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