HCM-ers: Introduce yourself or just say hi

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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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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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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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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