HCM-ers: Introduce yourself or just say hi

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.

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.

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.

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

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.

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