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?

@sheim

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'm glad to hear you're doing well. I believe my surgery is at St. Mary's on Oct. 17th.

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@sheim

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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My husband is one year out and I can’t tell you how great he is doing. Wants to go zip lining to celebrate. Both doctors and staff at Mayo are the best. We live in NJ next to NYC which has great hospitals, but you can’t get the care as at Mayo.

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Hi, I am newly diagnosed with HOCM after physician heard a murmur at routine checkup. Awaiting cardiology appt this week. I have sigmoid ventricular septum that is causing the obstruction. I have been treated for hypertension for 5-6 years although always had hypertension with each of my pregnancies. I have had continuous weight gain over last 3 years of about 7-8 lbs per year. I thought the pressure in my chest and sob was just related to being fat and out of shape when on walks or even just walking up a flight of stairs. Prior to this my weight had always remained pretty steady-i am 47 years old and contributed wt gain to metabolism slowing down as menopause approached. Since this spring I have had chronic cough after respiratory infection that I couldn’t get rid of. Also have had dizziness on standing and with bending over and straightening again for some time, recently getting worse. Since my echo I have had increasing chest pain with going for walks- some days being better than others. Also have been having a lot of palpitations and occassional heart arrythmias noted. Currently on losartan/hctz 100mg-12.5 mg for blood pressure . Have backed off of lasix with new diagnosis as contraindicated per pcp recommendation. I am yet to have a stress echo. Also have been experiencing a head rush type of feeling in my head lately. I am a RN so understand alot of this- but question when there is obstruction how likely are medications supposed to work and is that just going to be a temporary bandaid until surgery is needed? Thanks in advance. I think this is a great site for people to get information and am very grateful to all those who contribute. Also doctor through Mayo in Eau Claire/ Menomonie Wi and live 90 minutes from Rochester so am fortunate that way.

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@ajand

Hi, I am newly diagnosed with HOCM after physician heard a murmur at routine checkup. Awaiting cardiology appt this week. I have sigmoid ventricular septum that is causing the obstruction. I have been treated for hypertension for 5-6 years although always had hypertension with each of my pregnancies. I have had continuous weight gain over last 3 years of about 7-8 lbs per year. I thought the pressure in my chest and sob was just related to being fat and out of shape when on walks or even just walking up a flight of stairs. Prior to this my weight had always remained pretty steady-i am 47 years old and contributed wt gain to metabolism slowing down as menopause approached. Since this spring I have had chronic cough after respiratory infection that I couldn’t get rid of. Also have had dizziness on standing and with bending over and straightening again for some time, recently getting worse. Since my echo I have had increasing chest pain with going for walks- some days being better than others. Also have been having a lot of palpitations and occassional heart arrythmias noted. Currently on losartan/hctz 100mg-12.5 mg for blood pressure . Have backed off of lasix with new diagnosis as contraindicated per pcp recommendation. I am yet to have a stress echo. Also have been experiencing a head rush type of feeling in my head lately. I am a RN so understand alot of this- but question when there is obstruction how likely are medications supposed to work and is that just going to be a temporary bandaid until surgery is needed? Thanks in advance. I think this is a great site for people to get information and am very grateful to all those who contribute. Also doctor through Mayo in Eau Claire/ Menomonie Wi and live 90 minutes from Rochester so am fortunate that way.

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Welcome to Connect, @ajand.
I’m tagging @archer @rrowner2 @falconfly as they’ve shared their experiences about medications in this discussion:
– MEDS FOR HCM – DOSAGE https://connect.mayoclinic.org/discussion/meds-for-hcm-dosage/

I also thought you might be interested in reading about a new drug trial which has shown promising results for HCM/HOCM patients:
– Mavacamten Treatment for Obstructive Hypertrophic Cardiomyopathy: A Clinical Trial.
https://www.biospace.com/article/clinical-trial-results-from-myokardia-s-phase-2-pioneer-hcm-study-of-mavacamten-published-in-the-annals-of-internal-medicine/

Connect’s Alumna Mentor, @cynaburst had mentioned that, "Losartan is not a medication that is commonly used in HCM.” May I ask if you are seeing an HCM specialist?

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@kanaazpereira

Welcome to Connect, @ajand.
I’m tagging @archer @rrowner2 @falconfly as they’ve shared their experiences about medications in this discussion:
– MEDS FOR HCM – DOSAGE https://connect.mayoclinic.org/discussion/meds-for-hcm-dosage/

I also thought you might be interested in reading about a new drug trial which has shown promising results for HCM/HOCM patients:
– Mavacamten Treatment for Obstructive Hypertrophic Cardiomyopathy: A Clinical Trial.
https://www.biospace.com/article/clinical-trial-results-from-myokardia-s-phase-2-pioneer-hcm-study-of-mavacamten-published-in-the-annals-of-internal-medicine/

Connect’s Alumna Mentor, @cynaburst had mentioned that, "Losartan is not a medication that is commonly used in HCM.” May I ask if you are seeing an HCM specialist?

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My first cardiology appointment is Thursday so I expect they will change my medication at that time.

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@ajand

Hi, I am newly diagnosed with HOCM after physician heard a murmur at routine checkup. Awaiting cardiology appt this week. I have sigmoid ventricular septum that is causing the obstruction. I have been treated for hypertension for 5-6 years although always had hypertension with each of my pregnancies. I have had continuous weight gain over last 3 years of about 7-8 lbs per year. I thought the pressure in my chest and sob was just related to being fat and out of shape when on walks or even just walking up a flight of stairs. Prior to this my weight had always remained pretty steady-i am 47 years old and contributed wt gain to metabolism slowing down as menopause approached. Since this spring I have had chronic cough after respiratory infection that I couldn’t get rid of. Also have had dizziness on standing and with bending over and straightening again for some time, recently getting worse. Since my echo I have had increasing chest pain with going for walks- some days being better than others. Also have been having a lot of palpitations and occassional heart arrythmias noted. Currently on losartan/hctz 100mg-12.5 mg for blood pressure . Have backed off of lasix with new diagnosis as contraindicated per pcp recommendation. I am yet to have a stress echo. Also have been experiencing a head rush type of feeling in my head lately. I am a RN so understand alot of this- but question when there is obstruction how likely are medications supposed to work and is that just going to be a temporary bandaid until surgery is needed? Thanks in advance. I think this is a great site for people to get information and am very grateful to all those who contribute. Also doctor through Mayo in Eau Claire/ Menomonie Wi and live 90 minutes from Rochester so am fortunate that way.

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ajand …all you described could have been me. I'm surprised your Dr diagnosed you with HOCM. A murmur alone doesn't tell them that. It wasn't until my cardiologist did an echo (among other tests) and found the the thickened heart muscle that he said I had HOCM. We tried medicines that didn't really help so the end of Aug I had a Septal Myectomy. Two different doctors here told me not to have the surgery anywhere except the Mayo in Rochester Mn which is where I had it. Tests had to be repeated there even tho they had everything from here…just making sure of everything I guess. I could never live in Mn because of your weather but I think people there are so blessed to have Mayo at their fingertips.

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@ajand

Hi, I am newly diagnosed with HOCM after physician heard a murmur at routine checkup. Awaiting cardiology appt this week. I have sigmoid ventricular septum that is causing the obstruction. I have been treated for hypertension for 5-6 years although always had hypertension with each of my pregnancies. I have had continuous weight gain over last 3 years of about 7-8 lbs per year. I thought the pressure in my chest and sob was just related to being fat and out of shape when on walks or even just walking up a flight of stairs. Prior to this my weight had always remained pretty steady-i am 47 years old and contributed wt gain to metabolism slowing down as menopause approached. Since this spring I have had chronic cough after respiratory infection that I couldn’t get rid of. Also have had dizziness on standing and with bending over and straightening again for some time, recently getting worse. Since my echo I have had increasing chest pain with going for walks- some days being better than others. Also have been having a lot of palpitations and occassional heart arrythmias noted. Currently on losartan/hctz 100mg-12.5 mg for blood pressure . Have backed off of lasix with new diagnosis as contraindicated per pcp recommendation. I am yet to have a stress echo. Also have been experiencing a head rush type of feeling in my head lately. I am a RN so understand alot of this- but question when there is obstruction how likely are medications supposed to work and is that just going to be a temporary bandaid until surgery is needed? Thanks in advance. I think this is a great site for people to get information and am very grateful to all those who contribute. Also doctor through Mayo in Eau Claire/ Menomonie Wi and live 90 minutes from Rochester so am fortunate that way.

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My husband had an SM last October at Rochester, 6 months prior to surgery he was on max ( toxic) amounts of meds and they had stopped fully managing his symptoms the side effects were increasing. Apart from all this he was in good physical shape, no diabetes etc. soooo the surgery was amazing he recovered quickly and was back to “normal” still has cardiomyopathy but no obstruction. He/we were beyond impressed with everything about our experience at Mayo.

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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 the end of June and everything went great.

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@sheim

ajand …all you described could have been me. I'm surprised your Dr diagnosed you with HOCM. A murmur alone doesn't tell them that. It wasn't until my cardiologist did an echo (among other tests) and found the the thickened heart muscle that he said I had HOCM. We tried medicines that didn't really help so the end of Aug I had a Septal Myectomy. Two different doctors here told me not to have the surgery anywhere except the Mayo in Rochester Mn which is where I had it. Tests had to be repeated there even tho they had everything from here…just making sure of everything I guess. I could never live in Mn because of your weather but I think people there are so blessed to have Mayo at their fingertips.

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I did have an echocardiogram- they found sigmoid septum with lvoto

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@kanaazpereira

Welcome to Connect, @ajand.
I’m tagging @archer @rrowner2 @falconfly as they’ve shared their experiences about medications in this discussion:
– MEDS FOR HCM – DOSAGE https://connect.mayoclinic.org/discussion/meds-for-hcm-dosage/

I also thought you might be interested in reading about a new drug trial which has shown promising results for HCM/HOCM patients:
– Mavacamten Treatment for Obstructive Hypertrophic Cardiomyopathy: A Clinical Trial.
https://www.biospace.com/article/clinical-trial-results-from-myokardia-s-phase-2-pioneer-hcm-study-of-mavacamten-published-in-the-annals-of-internal-medicine/

Connect’s Alumna Mentor, @cynaburst had mentioned that, "Losartan is not a medication that is commonly used in HCM.” May I ask if you are seeing an HCM specialist?

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My physician is a cardiologist. Not sure if he is a HCM specialist. The Losartan was prescribed for hypertension, which had been determined as the likely cause of my cardiomyopathy. The metoprolol alone had not sufficiently controlled my blood pressure. Two years after taking Losartan, my blood pressure began to rise again. A person on this blog suggested adding supplements in lieu of increasing my Losartan dosage. The one which has helped a great deal is Hawthorn Berry. In my case, it has been of enormous help.

Liked by brendakaye

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@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I’m tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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Hi. Three years ago I had Resection of sub aortic membrane,Left ventricular septal myectomy
Aortic valve replacement w mechanical prosthesis performed at Mayo. I have a yearly checkup at the Mayo valve clinic. Now that I am aware I have HCM should I be seen at the HCM clinic by one of their drs instead? I have questions I don’t feel the valve clinic can answer.

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Hi my name is Linda. I am having a septal myectomy beginning of October with Dr. Schaff. I received my paperwork and saw the picture of patient coming out of the surgery room. It is quite scary. I read some things regarding back pain long after the surgery. I guess I feel I want to connect with some people that had this surgery.

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Hi, my name is Tim. I had the surgery in January of 2013. I was sent a DVD prior to surgery and told to have all of the family that might come to see me watch it. It addressed how patients look following this surgery. I can tell you that it was very accurate. When I came to ICU there were lots of tubes and wires and I was very grey. My brother had not watched the DVD and thought that I had passed away.
For about a month after surgery my right shoulder was very painful. I attributed this to my arms being held back above my head during surgery. This pain went away after the first week of cardiac rehab. I never felt any pain around my sternum.
Regardless of the shoulder pain and the way things looked in the ICU, I received excellent and my life is so much better today. As a matter of fact, I am certain that I would not be here today without the excellent care I received at Mayo.

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