HCM-ers: Introduce yourself or just say hi

Hi Wayne here .I live in Ontario Canada and have HCM. So happy I found you and feel I have people I can relate to. I am in need of a total knee replacement and Dr.s are worrying me with the risks.

My daughter diagnosed with HOCM wants to do masters in the US during 2021. What is the kind of medical insurance would she need ? I hear that the medical insurance does not cover existing illness. Can some one advice please ?

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

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 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 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.