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?

@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, I'm Tonia. I was originally told that I had left ventricle hypertrophy caused by HBP, but was recently told that I have HCM. I'm sick over it.

REPLY

Hi I’m Linda. Had surgery for HCM on October 1, 2019 with Dr Schaff

REPLY
@toniaandjoel1

Hi, I'm Tonia. I was originally told that I had left ventricle hypertrophy caused by HBP, but was recently told that I have HCM. I'm sick over it.

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Welcome @toniaandjoel1. Getting a new diagnosis of HCM is tough. But it is also the beginning of understanding what is going on and how you can live well. There are many members here who can answer any questions you might have. I'm sure you have a lot. What concerns you most today?

REPLY

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.

REPLY

Dear Karukgirl, My experience was as follows: 3 years ago at age 72 and healthy, I learned that I had an aortic root aneurysm, severe hypertrophy of both atria, and a hinky aortic valve. The "plumbers" agreed about the need for an open heart surgery to graft a new aorta, repair/replace the valve, and "while under the hood" consider perform a myectomy. My wife and I agreed but, like you, with grave concerns. I underwent the surgery in June of 2017 at Tampa General Hospital-8 hours on bypass, 5 days in cardio intensive care, started cardio rehab a month later, and went thru a South Florida hurricane (Irma) that September. I'm still above ground, older and a little slower, but still working part-time and enjoying friends, family, and life. I won't advise you about PJ's. shoes, travel logistics etc because that's mostly irrelevant compared to what is truly important:
-First of all, it's gonna suck-but not nearly as badly as you think. I would do it again in a heartbeat (pardon the lame pun) because the benefits far outweigh the risks. Do not let your worrying ruin your outlook. Here's what I learned in the Marines: Accept, Adapt, and Overcome. You can do this-and you will do this!
-Trust your Docs. They have a vested interest in your health and their success. Ask pertinent questions and demand thorough answers. This will lead to more confidence for you and more empathy from them.
– You didn't mention a friend or a significant other. This is very important to help you over the inevitable physical/emotional bumps in the road on your way back to health. It will also give you somebody to lean on-if only to make sure you have your favorite slippers…
Best of luck and God Bless. Go forth with a joyful heart (no pun this time) and please let us know when you're back hiking the hills!
George

REPLY
@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.

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Welcome to Mayo Clinic Connect, @karukgirl. You ask some great questions as you get ready for your myectomy with Dr. Dearani at Mayo Clinic. In addition to the info that @yurkosolhan has offered, I'd also like to tag @ronpetrovich @cynaburst @debcrawford @sheim @rrowner2 and others on this thread to jump in.

Karukgirl, as we wait for others to join the discussion, I encourage to read these related discussions:
– Freaking out a bit – Upcoming surgery! https://connect.mayoclinic.org/discussion/freaking-out-a-bit/
– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
– Travelogue about a visit to the HCM Clinic at Mayo Clinic – Rochester https://connect.mayoclinic.org/discussion/travelogue-about-a-visit-to-the-hcm-clinic-at-mayo-clinic-rochester/
– Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Keep asking questions.

REPLY
@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.

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Dear Karukgirl – I am a 73 year old female that had a septal myectomy 5 months ago on October 1, 2019. I was an avid tennis player, hiked, aerobics, etc. On the tennis court several years ago I could not catch my breath. It started to get worse and I went to cardioligists, pulmonary doctors, etc. with no diagnosis but acid reflux. I finally moved to San Diego and was diagnosed with HCM with obstruction. My cardioligist suggested I go to the Mayo Clinic in Rochester, Minnesota for confirmation. I did so and had 3 days of intensive testing. I saw Dr. Newman the cardiologist at the Mayo. It was confirmed and I had a gradient of over 100. I did a lot of research where and with whom to have my surgery with. I ended up going to the Mayo Clinic and like you I was panicked. I read a lot from people on Mayo Connect and saw a lot of videos on HOCM from the surgeons at the Mayo Clinic. I knew I would be safe with these doctors they are the best in the country and they do over 200 of these surgeries a year. I also had a angiogram in the cath lab the day before the surgery and I did not stay over in the hospital. I also was afraid of blood clots, heart attack, stroke, etc. as I'm sure we all are. The main concern they had did not seem to be any of those things. Their main concern seemed to be infection and they did EVERYTHING to avoid that including getting a clearance from my dentist. They are so thourough and competent. I did not remember going into the operating room which is a good thing for me. I don't remember much after surgery. I can't remember if it was the next day or the day after they had me walk with a walker several times a day. The care at the hospital was amazing. My husband and 3 children were there. We flew in from San Diego, Calif. We stayed at a suite and my family were at my bedside all day long as long as they wanted. To answer some of your questions, I was not depressed, exactly the opposite. The surgery and the anticipation before was over with and I could feel the results right away. I could breathe properly. I did not bring my own pillow. I could not wear a bra because of the incision. I did wear a large sports bra when needed and comfortable clothes. I stayed in the hospital for 5 days and then went back to the suite for 3 days for I wanted to be nearby the doctors. I then went back to the hospital to see the doctor to be checked and the next day I flew home. Flying was just fine.
My feet did not swell after surgery I wore comfortable tennis shoes to go home. The airports have wheelchairs to get you to the gate. You should bring comfortable clothing you can put tee shirts over your head. If you are planning to stay a few days after surgery bring whatever comforts you want like PJ's etc.
After reading a lot, Ronald Petrovich post about his surgery helped me so much. He actually works at the Mayo Clinic and had the surgery there at St. Marys hospital. His suggestions of getting a power recliner was a godsend. It was very hard to sleep in bed the first weeks especially getting out of bed. I purchased an one before I left for my surgery. Best thing I ever did. I lived in that chair for the first few weeks. You can borrow one or rent one also. He also said to have a lot of clean washcloths to dry off your incision. Like I said the doctors seemed to only be concerned about infection so I was very careful and used a washcloth only once before I washed it.
I did walk every day with the walker and could only go a couple of houses the first week. You'd be surprised if you follow all the directions from the hospital how quickly you will recover. It is very important to you go to a cardio rehab after a few weeks. I am now on the treadmill and elliptical for 1 hour 4-5 times a week.
Post op was not that easy. I think the hardest thing was excrutiating back pain which a lot of people get. I had to take pain medication for that, it was not nice. They will give you a massage at the hospital so make sure you request it. I did go to physical therapy for the back pain and did the excersises which did help. Also do not lift anything heavy for several months. I went to a party last night with dancing and I danced all night. I am so glad I had this surgery I have my life back. (I still have a ways to go but I do feel great). I wish you luck and good wishes for a quick recovery. You are in the best hands in the country with those doctors.
Linda

REPLY

I had a mixed experience having my septal myectomy at Mayo.

The surgeon Schaff did the job and it went well, or so I was told upon discharge, Neither my husband nor I ever saw him after the surgery. I asked and was told I wasn't sick enough to see him. No one ever told me how it went until the morning of discharge. So it took an entire week to know whether it was successful.
The cardiologist who did the pretest clearance was good and very nice. She told me she would come by post surgery. She never did.
The nursing care was 90% kind and excellent. You get a private room.
I was supposed to get a defibrillator afterwards and when that didn't happen, asked to speak with an electrophysiologist. No one showed up and I left without one. Had to have it placed elsewhere.
I left with a raging fungal infection over 1/3 of my body and a tiny tube of cream. This was discovered the morning of my discharge.
I told them I needed anticoagulation post discharge because of a previous blood clot. The non doctor who saw me was rude and told me he knew best and refused to prescribe.

I developed a pulmonary embolism after I got home.

Mayo is a wonderful facility, the best in the country. I don't write this to slam them. Every hospital has issues. None of us is perfect. But you are weak, in pain, and sick after surgery. You need a family member who will advocate for you in a firm but polite way, otherwise you may not get the best of care. My husband was too passive thinking they knew best.

REPLY
@yurkosolhan

Dear Karukgirl, My experience was as follows: 3 years ago at age 72 and healthy, I learned that I had an aortic root aneurysm, severe hypertrophy of both atria, and a hinky aortic valve. The "plumbers" agreed about the need for an open heart surgery to graft a new aorta, repair/replace the valve, and "while under the hood" consider perform a myectomy. My wife and I agreed but, like you, with grave concerns. I underwent the surgery in June of 2017 at Tampa General Hospital-8 hours on bypass, 5 days in cardio intensive care, started cardio rehab a month later, and went thru a South Florida hurricane (Irma) that September. I'm still above ground, older and a little slower, but still working part-time and enjoying friends, family, and life. I won't advise you about PJ's. shoes, travel logistics etc because that's mostly irrelevant compared to what is truly important:
-First of all, it's gonna suck-but not nearly as badly as you think. I would do it again in a heartbeat (pardon the lame pun) because the benefits far outweigh the risks. Do not let your worrying ruin your outlook. Here's what I learned in the Marines: Accept, Adapt, and Overcome. You can do this-and you will do this!
-Trust your Docs. They have a vested interest in your health and their success. Ask pertinent questions and demand thorough answers. This will lead to more confidence for you and more empathy from them.
– You didn't mention a friend or a significant other. This is very important to help you over the inevitable physical/emotional bumps in the road on your way back to health. It will also give you somebody to lean on-if only to make sure you have your favorite slippers…
Best of luck and God Bless. Go forth with a joyful heart (no pun this time) and please let us know when you're back hiking the hills!
George

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Thank you yurkosalhan, for your wise advice.
And THANK YOU for your service! Marines are TOUGH!
I do have a significant other who will be my escort, bell boy, body guard and comforter. I lost my mom a few months ago, have a demented WWII (Mine Sweeper) father to care for and a host of other typical "life" challenges, so HOCM is only one challenge. I thought I could live with this, but truly it has robbed me of so many things I love, that this surgery, as rough as it sounds, is hopefully going to give me back my ability to enjoy the things I enjoy so much, for as long as I can. And the future without having this sounds disappointing and perhaps may even shorten my life. So septal myectomy it is!
I have strong Faith. And even though I forget sometimes and start wringing my hands, I ultimately come back to that Faith and accept. I do believe that placing myself in the care of the Mayo Clinic, the doctors, nurses, technicians, housekeeping, the entire team, will be the best decision I ever made.
You've been through a lot, your attitude sounds amazing, and your philosophy "Accept, adapt, overcome" sounds like a good tattoo 🙂 I don't have any tattoos, but if I did I'd consider that! Thank you so much for your thoughtful response. And God bless you too!

REPLY
@mosaic

I had a mixed experience having my septal myectomy at Mayo.

The surgeon Schaff did the job and it went well, or so I was told upon discharge, Neither my husband nor I ever saw him after the surgery. I asked and was told I wasn't sick enough to see him. No one ever told me how it went until the morning of discharge. So it took an entire week to know whether it was successful.
The cardiologist who did the pretest clearance was good and very nice. She told me she would come by post surgery. She never did.
The nursing care was 90% kind and excellent. You get a private room.
I was supposed to get a defibrillator afterwards and when that didn't happen, asked to speak with an electrophysiologist. No one showed up and I left without one. Had to have it placed elsewhere.
I left with a raging fungal infection over 1/3 of my body and a tiny tube of cream. This was discovered the morning of my discharge.
I told them I needed anticoagulation post discharge because of a previous blood clot. The non doctor who saw me was rude and told me he knew best and refused to prescribe.

I developed a pulmonary embolism after I got home.

Mayo is a wonderful facility, the best in the country. I don't write this to slam them. Every hospital has issues. None of us is perfect. But you are weak, in pain, and sick after surgery. You need a family member who will advocate for you in a firm but polite way, otherwise you may not get the best of care. My husband was too passive thinking they knew best.

Jump to this post

Dear Mosaic,
I'm grateful to you for your response, and so sorry that you had so many issues during and after your surgery. It's already hard enough just preparing mentally for something this big, but to have so much happen afterwards must have been difficult for you. I do not have to worry about my significant other not advocating for me when I can't. He's very protective of me, and he will be certain anything and everything is addressed before we leave town. I have heard, read and believe that the nurses and doctors at the Mayo Clinic are the top in the Nation, and I am placing my life in their hands and praying that God lead me here for this reason.
I hope you are doing better, that your life is better after the surgery and you are far down the road to recovery. Thank you for sharing your experience. Best regards.

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@lindalou1117

Dear Karukgirl – I am a 73 year old female that had a septal myectomy 5 months ago on October 1, 2019. I was an avid tennis player, hiked, aerobics, etc. On the tennis court several years ago I could not catch my breath. It started to get worse and I went to cardioligists, pulmonary doctors, etc. with no diagnosis but acid reflux. I finally moved to San Diego and was diagnosed with HCM with obstruction. My cardioligist suggested I go to the Mayo Clinic in Rochester, Minnesota for confirmation. I did so and had 3 days of intensive testing. I saw Dr. Newman the cardiologist at the Mayo. It was confirmed and I had a gradient of over 100. I did a lot of research where and with whom to have my surgery with. I ended up going to the Mayo Clinic and like you I was panicked. I read a lot from people on Mayo Connect and saw a lot of videos on HOCM from the surgeons at the Mayo Clinic. I knew I would be safe with these doctors they are the best in the country and they do over 200 of these surgeries a year. I also had a angiogram in the cath lab the day before the surgery and I did not stay over in the hospital. I also was afraid of blood clots, heart attack, stroke, etc. as I'm sure we all are. The main concern they had did not seem to be any of those things. Their main concern seemed to be infection and they did EVERYTHING to avoid that including getting a clearance from my dentist. They are so thourough and competent. I did not remember going into the operating room which is a good thing for me. I don't remember much after surgery. I can't remember if it was the next day or the day after they had me walk with a walker several times a day. The care at the hospital was amazing. My husband and 3 children were there. We flew in from San Diego, Calif. We stayed at a suite and my family were at my bedside all day long as long as they wanted. To answer some of your questions, I was not depressed, exactly the opposite. The surgery and the anticipation before was over with and I could feel the results right away. I could breathe properly. I did not bring my own pillow. I could not wear a bra because of the incision. I did wear a large sports bra when needed and comfortable clothes. I stayed in the hospital for 5 days and then went back to the suite for 3 days for I wanted to be nearby the doctors. I then went back to the hospital to see the doctor to be checked and the next day I flew home. Flying was just fine.
My feet did not swell after surgery I wore comfortable tennis shoes to go home. The airports have wheelchairs to get you to the gate. You should bring comfortable clothing you can put tee shirts over your head. If you are planning to stay a few days after surgery bring whatever comforts you want like PJ's etc.
After reading a lot, Ronald Petrovich post about his surgery helped me so much. He actually works at the Mayo Clinic and had the surgery there at St. Marys hospital. His suggestions of getting a power recliner was a godsend. It was very hard to sleep in bed the first weeks especially getting out of bed. I purchased an one before I left for my surgery. Best thing I ever did. I lived in that chair for the first few weeks. You can borrow one or rent one also. He also said to have a lot of clean washcloths to dry off your incision. Like I said the doctors seemed to only be concerned about infection so I was very careful and used a washcloth only once before I washed it.
I did walk every day with the walker and could only go a couple of houses the first week. You'd be surprised if you follow all the directions from the hospital how quickly you will recover. It is very important to you go to a cardio rehab after a few weeks. I am now on the treadmill and elliptical for 1 hour 4-5 times a week.
Post op was not that easy. I think the hardest thing was excrutiating back pain which a lot of people get. I had to take pain medication for that, it was not nice. They will give you a massage at the hospital so make sure you request it. I did go to physical therapy for the back pain and did the excersises which did help. Also do not lift anything heavy for several months. I went to a party last night with dancing and I danced all night. I am so glad I had this surgery I have my life back. (I still have a ways to go but I do feel great). I wish you luck and good wishes for a quick recovery. You are in the best hands in the country with those doctors.
Linda

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Dear Lindalou1117,
Wow! Thank you for all that information. I've read lots and lots of things on this board, and Ron Petrovich's was one of them. Based on his story, I already went out and bought a 12-pack of designated wash cloths for the daily incision maintenance! I keep reading about recliners, recliners, recliners! OMGosh! But I think I'm so tough I can get thru this without one…mostly because I'm afraid it may end up staying in my house, and I do not like recliners 😮 I mentioned in a response to yurkosolhan that my mom passed away a few months ago. It has been a rough couple of months, unbelievable actually, but she had a recliner. It's in my garage. Not anything fancy. Not sure I could use my arms on the 'gear shifter' but it's there…
I can't thank you enough for answering so many questions! That you took the time to do so, is something I truly appreciate. Truly. And all the way from the other end of the State too! What you have shared, I hope helps others, not just me. You did it. You survived, and you are thriving! Yay!!!
It's tough to plan for this trip. What if there is a complication? What if the Corona Virus attacks me? What if??? But our plan is to stay a day of so after discharge, like you, and fly to Sacramento and drive the 2.5 hours north. You make it sound not only do-able but easy! That's just good to know. And the shoe information? Excellent. I read you can't bend over to tie your own shoes, so I was looking for an excuse to go shopping. A pre and post-op wardrobe. But sounds like I can shop in my own closet. I did invest in a couple of soft "lounge" type bras that I can pull up myself. And I was glad to hear you can pull a t-shirt over your head. I am glad for you that you didn't suffer from depression. That is a blessing. I am hoping I breeze thru all this with nothing but a gnarly scar to show what I went thru. I agree that attitude is important, and for the most part, although scared, I am prepared to do this. Thank you once more for sharing your experience. You sound like a wonderful person and I hope your future is better now that your heart is healing. Best regards.

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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

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@karukgirl

Dear Mosaic,
I'm grateful to you for your response, and so sorry that you had so many issues during and after your surgery. It's already hard enough just preparing mentally for something this big, but to have so much happen afterwards must have been difficult for you. I do not have to worry about my significant other not advocating for me when I can't. He's very protective of me, and he will be certain anything and everything is addressed before we leave town. I have heard, read and believe that the nurses and doctors at the Mayo Clinic are the top in the Nation, and I am placing my life in their hands and praying that God lead me here for this reason.
I hope you are doing better, that your life is better after the surgery and you are far down the road to recovery. Thank you for sharing your experience. Best regards.

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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!

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@colleenyoung

Welcome to Mayo Clinic Connect, @karukgirl. You ask some great questions as you get ready for your myectomy with Dr. Dearani at Mayo Clinic. In addition to the info that @yurkosolhan has offered, I'd also like to tag @ronpetrovich @cynaburst @debcrawford @sheim @rrowner2 and others on this thread to jump in.

Karukgirl, as we wait for others to join the discussion, I encourage to read these related discussions:
– Freaking out a bit – Upcoming surgery! https://connect.mayoclinic.org/discussion/freaking-out-a-bit/
– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
– Travelogue about a visit to the HCM Clinic at Mayo Clinic – Rochester https://connect.mayoclinic.org/discussion/travelogue-about-a-visit-to-the-hcm-clinic-at-mayo-clinic-rochester/
– Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

Keep asking questions.

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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

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@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.

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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

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