Freaking out a bit - Upcoming surgery!

Hey Badmac:

It is an open heart procedure, at least mine was. I was diagnosed four years ago, but the doctors didn't explain how serious it was until last summer. Mine is genetic and I had a terrible time, fatigue, brain fog, syncope. The cardiologist just didn't offer surgery as a solution, so I didn't know it was an option.

I had a myectomy at Mayo in Rochester in August and wish I'd had it sooner. I feel better than I've felt in 4 or more years, think more clearly, have more energy, don't pass out.

I had a doctor ask me if I had a family member who went to bed and then just didn't wake up. The answer was no, but even with that as her question, she didn't suggest surgery.

Stay strong and know that you'll feel better quickly so you can get on with your life.

I'm 68 and have sons almost your age. They've been checked and don't have it and I'm so glad.

I can't imagine having surgery like this anywhere but a Mayo hospital. I had to travel 10 hours to do it and would do it again.

Onward, Bonnie

I totally can relate to you freaking out. I was officially diagnosed with HOCM in Feb. I tend not to believe Dr's, especially when they want to give me a medicine I don't want to take ( in this case Disopyramide). I got a second opinion from a dr not connected with the health system I go to. He looked at every test report I took in and was 100% in agreement. He also said he thinks a septal myectomy is in my future but if my dr did suggest it to go NOWHERE but Mayo in Rochester Mn. He actually said don't go to Az or Fl. Maybe he's partial or maybe they really ARE the experts. Find out how many of this surgery Az Mayo does. If it is less than 200 a year I'd consider a trip to Mn. The way he explained it. ....they do between 200-250 a year. The rest of hospitals nation wide COMBINED don't do that many. He said you need more than a dr who knows how to do it...you need a whole team of experts. I'm headed to have mine done next month and while I'm nervous about it, I think I'm doing the right thing. Good luck to you!

The number of procedures done at Rochester drove my decision. My experience was amazing. I left on the 6th day to go home. Stay in touch and let us know how things go. Onward!

bpictartz, You went home on the 6th day?! WOW! How long were you actually in the hospital? We had no idea what to expect so we got an Airbnb for 2 weeks. Did you fly? How was going through security? Did you use a wheel chair or able to walk? The closer this gets I think I get more questions in my mind and more doubts of ....am I REALLY so bad? Then I remember what my primary dr said about perfect timing. I just turned 70, My health is good, I work out (tho I get out of breath pretty easy but also recover within a minute or so of stopping). She said if I waited who knows what my heath will be like.

My surgery was on a Thursday. I went to the hospital that morning. I was released the next Thursday morning. I had a little problem with afib, so I they kept me a day longer than anticipated. We got to Mayo on Monday and had three days of tests. My surgeon was Dr. Said. He is amazing.

We rented our Airbnb for 10 days and that worked out. It was about 15 minutes from the hospital, but really nice and nice people, and was inexpensive ($30 a day). The couple who own it, a beautiful restored craftsman home, even came to visit me. We both stayed there before the surgery, then my husband stayed there while I was in the hospital. It cost more to kennel our dog ($35 a day) than for our Airbnb:)

We drove and I didn't use a walker or wheelchair. They'll recommend a walker, I think, so take one with you so you don't have to buy it there. They are pricey at the medical supply companies there.

You'll go to cardiac rehab once you get home, about two or three weeks after surgery. It's really important.

Don't wait. I wish someone had told me to have surgery three years earlier. I'm 68 and have more energy than I've had in several years. I'm 9 months out and feel great.

@badmac , I can relate to you completely! My story is so the same as yours. I was going to cardiologist since my early 20s. Also said I had a heart murmur. Always did testing but never found anything. Finally after my younger brother who is 16 yrs younger then I fell over playing basketball at school,he was 16 then. We discovered we had the genetic for HCM. My brother did survive. Which they say was nothing but a miracle after being in a comma for weeks. Long story short, since then I have been on many medications for HCM that seemed to be controlled very well untill about 4 yrs ago things started to change and it was like the medications were no longer working. I started having many symptoms from severe fatigue, strange heart palpitations, very bad head fog, dizzy like being drunk & I don't drink lol, to passing out a few times. My anxiety has no doubt become worse also. I had testing done all day on may 31st at Mayo MN. Today is Sunday June 2 and as I lay here crying this morning writing this I am having severe anxiety for my myectomy tomorrow! I thinks it's all the what is thoughts going through my head and I feel scared also wondering if I'm doing the right thing. I just turned 57 and even considered leaving the hotel and going home last night. Lol. Thank goodness for my family here with me or I may have been gone. But I read everyone's post's and it does help relax me. I've decided to stay and will call tonight for my surgery time tomorrow! They say I am in the best hands with Dr Shaff. So yes I am freaking out but I'm gonna try to stay positive and believe this is the right thing to do. Blessings and much luck to you!

This board is a very good thing just for support and encouragement. So glad I found it. It'd be nice if we could acually have emails as well. Reenj62, getting this done at 57 is a GOOD THING...just think how many years you will now have feeling better than you even thought you could. Awhile back I had some tests done for vertigo since I was getting it a lot and found that NOPE I don't have it. NOW since finding I have HOCM I find out THAT is why I was getting dizzy. I've never passed out but felt like it a lot...blamed it on low blood pressure even tho I take medicine for high blood pressure. I too have Dr Shaff! You had ONE DAY of testing? Gee...they spread me out through 3 days. 2 I guess..the day before surgery is meeting with dr's. Yeah, still nervous...still even a bit scared but almost looking forward to it. You got this (well your dr's do. 🙂 Blessings to you!

Reeng62, you will be so glad you did it. Mine was 10 months ago and I feel like I've been given a normal life again. Dr. Schaff is an amazing surgeon (cardiologists in TX who look at my heart now say they rarely see a post-myectomy septum that is so even). Put your trust in the team there.... It's going to be fine.... Better than fine!

@sheim ..Thank you so much. I have to be there in 5 hours and it's hard to sleep. I appreciate your support and the support of everyone on here. Thank you and blessings to you also!!

@markjones so glad to hear you are doing so well. Thank you for the encouragement. 5 hours and counting.