HCM-ers: Introduce yourself or just say hi

I am not sure. My Dr had me on toprol before surgery and all I did was sleep. Then went on atenolol before surgery and I was ok. After surgery and when I started skipping beats they put me on Sotolol 80 mg which I even tried splitting to 40 in am and 40 in pm. He said this was the last one to try.  I live upstate NY so have local cardio Dr here who is affiliated with Columbia Presbyterian in NYC, but I think I will get in touch with one somewhere else to go over everything. Very frustrating

I wonder if it is caused by your beta blocker. Being so tired. I am getting mine changed up. I refuse to live feeling tired, fatigued, cold and achy.

Hi ! I am 52 year old female who suffered years with HOCM. Last March, I had Septal myectomy, mitral valve replacement, pacemaker and 2 cardiac windows because of bleeding. I spent over 40 days in hospital and went home with openings in scar, infection and pic line. After scar closed and infection cleared I thought it was over. September I had to go back in because scar opened due to infection and needed peck flap surgery.
I am currently pacing at 80 % and had to switch to medicine to stop extra beats. I can't touch chest area because so sore, and live in fear that this is not over yet. Drs say exercise, that would be great if I wasn't always tired and short of breath. Is any of this normal? Has anyone had complications like this? I have been through Harrington rod surgery and surgery for Arnold Chiari (brain) and would prefer going through those again than dealing with this! Thank God I have family and friends who are with me every step of the way!

Thanks. I feel.better after reading your first first few weeks

Hang in there Janice. It takes time to heal and get back to your old self. Once you start feeling better hopefully the clouds will start to lift.

If you would like you can read my experiences after my own myectomy 10 years ago at http://www.Cynthiassummeradventure.blogspot.com. Start from the beginning and read
@rushtonrocks, my old blog might help you with your planning as well.

Good luck to all.

@janicepike, Feeling down after surgery is really common. I encourage you to start a new topic dedicated to this topic in the HCM group. There are a few among the group who have stories to share. Here's how to start a new discussion topic:

1. Go to the HCM group page https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/
2. Click START A DISCUSSION
3. Add a title. For example "Post myectomy depression" or "Feeling blue after successful surgery" (Use your preferred words)
4. Write the message and click CREATE DISCUSSION.

Thanks. I just need to get outsde, and be able to do the things I love. Gardening in the spring, is my goal. Strengthen my sterum, and stay motivated.

Funny that you should mention "give me cushion to plan flight back" because at Mayo, heart surgery patients get a heart cushion. We use a picture of the cushion as the picture for Heart Health group. Many have told stories about their cushion and how important it was post surgery.

@rushtonrocks do you know about the Mayo Clinic Concierge Services? They can assist you with questions related to lodging, transportation, local businesses and attractions. I believe that booking through Mayo Clinic can help if you have to change flights. Something to ask them about for sure.

You find more info here about all things related to travelling to Mayo in MN: http://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps

Hi there @janicepike, congrats on a successful surgery and for getting past the narcotics! You've body has been through a major event and is going to need time to get back up to it's usual paces, mentally and physically. I saw my father go through the same thing you're going through and saw that he was out of sorts also for awhile, but he improved quickly once he got back to his usual routine. Maybe taking up a new hobby would help take your mind off things. Go easy on yourself, you deserve it!