HCM-ers: Introduce yourself or just say hi

Thank you so much for all this information and all helpful tips to help me prepare! Like you, Ive had a hystectomy as well as gall bladder surgery and appendectomy - so no stranger to surgery and recovery, but I know this is going to be a whole other level! Im surprisingly calm/at peace but Im sure once I have the date, reality will hit! My biggest worry is waking up intubated in ICU… I know I’ll want that out stat! I dont like taking pain meds as they make me nauseous but not afraid to ask if its bad. Ive already inquired into an electric/lift recliner to help me get up. Did you need a walker at home? Thankfully Im in a ranch so no need to take stairs. How long did you stay near hospital before heading home? I’ll know more after the 21st and will you posted! Thank you again! 😊

Hi my name is David Connauton

I do have a couple of suggestions. I know how scary the thought of open heart surgery is. I was freaked out!! But I knew I was at the best place on the planet. I came from Northern California to Rochester, MN, and brought everything in a carry on.
Pull on pants. It was really helpful to have pull-on pants. Before surgery there is a lot of testing, so I was grateful for some easy on, easy off clothes. I chose linen pants, as it was July. After surgery, you are swollen. So forgiving, elastic-waist pants is a must!
Slip on shoes. After you get out of the hospital, you will be pretty beat up. Having slip on shoes so you don't have to bend over is helpful.
Pull on lounge-type bra. Oh boy! You don't want underwire, and you can't reach around to hook a bra. Being able to step into, and pull up a soft comfy bra was so wonderful. I went to TJ Maxx and bought a couple of 2-packs of them and was ever so glad I did.
Soft wash cloths. One of my discharge instructions was to use a clean wash cloth and liquid soap in the shower, every day. So I got Dr. Bronner's peppermint soap and a 10-pack of wash cloths from Ross. The sternum is pretty tender for awhile so I barely even touched it, more like patted with the soap and cloth.
A reclining chair. If you don't have one, you'll survive, but it was helpful for about a week. My significant other went out and bought me one before we left. It was electric so I didn't have to use the lever on the side. That would have been impossible!
Support person. You will need a support person for sure. You can't drive for a month, so you may be able to walk around and do small things, but you will need someone to drive you.
Nutrition. It's good to have some healthy foods available after you get home. Proteins are good for healing. Your appetite and taste buds are messed up. It takes a week or so for things to even sound good. I was in love with rice with butter for awhile. Strong, spicy food sounded awful!
Walking. Walking as much as you can is the best thing for you! But it is not easy for at least a month to get in or out of anything! The chair, the car, the bed, the toilet...any time you have to use your arms. It takes a while. I could not reach to close my car door for months!
Attitude. You are embarking on something that everyone wants to avoid at all costs! You are already braver than you know, and stronger too. Just making the decision to do this takes immense courage and faith. I put it all in God's hands and fully trusted Him and the Mayo team. There was a lot I did not anticipate. Any surgery has pain after, so that I was not caught off guard with. But I was not prepared for the intense stay in ICU. That is why it's called "Intensive" care unit. I had a hysterectomy a few years before this, so I knew a little about staying overnight. I was in five days. I hardly slept. The pillows were like rocks. The bed a joke. The food was terrible. They come and check at all hours of the day and night. You will want out ASAP!
Nurses. They are like angels on earth. They make everything I just mentioned above that is awful, just a little better.
Listen to your body. If you need a nap. Take one. Push yourself, but not too hard.
I hope you were able to get through this long post! If you did, and you have any other questions, please! Ask! I'm here to help if I can. I do know that Rochester is where the top HCM doctors practice. I am not familiar with Jacksonville, but if it's Mayo, it has to be good.

Ok, ty for sharing! I wish u the best

My thickness is at 19 mm and my LVOT gradient is at 122. I was at 52 in 2021 - its increased that quickly. Im on 50 mg metoprolol 3 times a day. Im 63 now, diagnosed at 58 too. Had issues for years but no one could pinpoint. Got dizzy spell at work at they took me in thinking it was heart attack. Im glad you are doing better and zero symptoms! ❤️

Hi ty for sharing! May i ask your thickness? I am 17 mm and my dr says he doesnt do surgeries till atleast 30 mm thickness. I know every situation is different I was just curious. Also I am getting along fine now, I am taking 37.5 mg metoprolol and diltiazem everything is going very well and I'm grateful PS I was diagnosed 5 months ago 58 years old. Prior to medication i had lite s.o.b. and occasional dizziness and resistance to excersize due to gradient. Now i have.zero symptoms

I’ve started a list if questions to ask. My main qyestion right now is whether surgery will be in Jacksonville or Rochester as ther are a lot of ligistucs to figure out. As far as surgery/recovery, do you have suggestions??

There is no getting around it...open heart surgery is a frightening thought! But having gone through it, and come out the other side, I can speak with authority...it's not fun, but it's not as bad was we make out to be in our minds! Your appointment is in November? That will be here before you know it! Do you have a list of questions to ask the surgeon?

How wonderful @summerrobin! You sound like you have a very active life. Walking, yoga and swimming...all great activities.
And also great medical supervision. There are several members here in the HCM group also from Canada, so you are in good company. I hope you are able to read some of the posts made by members that are helpful to you. Have you had a chance to poke around here on Connect?

I live in Canada. I have excellent coverage buy 3 specialists.
Cardiologist, HCM cardiologist and now an electrophysiologist plus a family
doctor. At the moment I’m in controlled afib. All my appointments are
covered by our health care and so are my Meds. I am blessed and cared
for. I swim, go to yoga and walk daily. Just a bit slower now with the
meds.