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What I Learned From My Open Heart Surgery
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 19 10:47pm | Replies (49)Comment receiving replies
Like Debra, I had a septal myectomy at Mayo, mine was 7/22. Every single one of us is different, so one person's experience is both the same and different depending on the specific issue discussed. In a nutshell, it was an easier pre and for the first couple of weeks, post recovery for me. I did not have an angiogram/heart cath during the pre-surgery testing, I had no back or other pain, after I was discharged, Tylenol at night only. Sleepy till day 4 after surgery, discharged on day 5 after surgery, and we drove (I navigated), day 6-7 home to upstate eastern NY. We stopped at just about every rest area so I could walk with my walker (borrow one if you can). I had no trouble with OT and PT post op, moved slower for a while keeping arms against the body as if they were in a cylinder. Hated that I could not sleep on my stomach. Hated giving blood for tests at 4 AM. Was up all the last night because the compressors on my legs to prevent clots was so annoying. Previous nights, I was still sleepy. That was my particular experience. I really did not want to know all the details of the surgery except for what it was to accomplish till after it was over, my anxiety and fear would have gone up more notches, both were already quite high. My HOCM became suddenly worse and life threatening in 2/22. I continued to walk (got out of breath), and go to the gym (I was told by PT and OT that my core muscles were very strong), right up to the day before we drove to Rochester, I believe that helped in my recovery. It was not fun at all, but kept my courage up.
Replies to "Like Debra, I had a septal myectomy at Mayo, mine was 7/22. Every single one of..."
@walkinggirl I noticed you said that your HOCM became suddenly worse. Mine just did that about 8 weeks ago. It was completely out of the blue, like one day I was doing fine 3 years after the diagnosis, and the next day I had shortness of breath, chest ache/pain, exhaustion etc. My cardiologists did an echocardiogram and it did not show any obstruction. So they were doubtful that the problem was HOCM but while I was looking for other causes (pulmonologist and other docs trying things out and testing), my cardiologists eventually did a cardiac catheterization and checked pressures and gradients on left and right sides of my heart both at rest and when they sped up my heart with medication injected during the procedure and that test did show the obstruction. They were surprised that it didn't show on the echocardiogram. Then I started jumping through all of the hoops to get Camzyos. That process took up so many hours of my life just to get the first 35 pills. A million calls etc. And as the end of the first month on Camzyos began to get closer to ending, I needed to make another million calls and have another echocardiogram so I could get the next 30 pills for the coming month. I'm still working on that and have only 6 pills left. They won't set up delivery unless you do all of this AND have 7 or less pills left. Very stressful worrying I won't get the delivery on time and will miss doses. And because the medication is so new, the doctors aren't aware of how much of this falls on the patient or of many of the side-effects. But the Camzyos did relieve the symptoms (so far). I know it's temporary relief and that eventually my heart walls with continue to thicken and make it a life-threatening situation. Anyway, when you said your HOCM became suddenly worse, I felt less alone--this is the first time I ever heard anyone say they had the same experience I had--I don't know anyone else with HOCM which is why I'm on this bulletin board.
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@walkinggirl...you are a champion!
Thank you for sharing your story for others to read.
You are so correct...we are all different and react to things differently. That's why sharing here on Connect may help someone else facing a BIG surgery in their future.
Your story about the last night brings back memories for me too!
You can't wait to get out of there!
You are an inspiration, and again, thank you for sharing with others!