HCM-ers: Introduce yourself or just say hi

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.

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

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.

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?

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

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.

I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing the life vest for 3 months - has anyone here wore the vest

Hello All, My name is Denis live near Boston and was evaluated at Tufts Medical Center with HCM. Since I am 78 YO am not being treated. I take 75 mg a day Metaprolol ER Succinate (Toprol XL) for non-sustained ventricular tacycardia. Having no problems and living a full life. How ? . Flying my Cessna 182 once a week all over New England. The Toprol XL is like a miracle medicine to me and keeps the tacycardia in check. Got the HCM from my Mother who dropped dead at age 73 , she had an enlarged heart. . I guess every day is a bonus .

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.

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.