What I Learned From My Open Heart Surgery

For my kidney tumors open surgery, my surgeon recommended sticking around Rochester for 3-4 days after discharge. Maybe ask your surgeon?

@oliviasoma ,
I see you are new here on Connect, so welcome aboard!
I tried to share my story and emphasize the part where I made it a huge and scary deal...in my mind! It was scary, but it was much worse in my head versus reality.
Since you had back surgery and know how you did after that, let that be your guide.
You don't have a Masters in Human Biology because your not smart, you are very smart.
And you mention you have the Lord. So give it to Him. Put it in His capable hands. I had to do that myself. I would give it to Him and take it back. Give. Take back. Many times. But finally I had peace.
You cannot be in a better place in the world than Rochester Mayo Clinic. They truly are the finest in the world and your care will be unbelievable. The nurses are like angels.

To answer your question about shortness of breath after surgery. YES! One hundred percent my shortness of breath was gone after surgery. So was the pounding, tachycardia, PVCs, and fatigue. I still have issues when I lose my ability to control my food portions. That's a nice way of saying when I can't stop eating something because it tastes so good, I pay for it. Think like a Thanksgiving meal portion wise.

Driving in stages sounds like a great option. I had to fly because I am in California. I also have a 2.5 drive to get to the airport, so it was an exhausting trip home. Being able to stop, walk around, stay overnight and drive the next day is a wonderful way to get home.
We stayed an extra two days, which was only because I was afraid to leave the Mayo area. It was again, all in my head!

You have many blessings. Being healthy before this is one of the tops. And going to Mayo Clinic. You will not get better care.
Do not let your thoughts control you. You can control them instead.
I hope the post I made was helpful to you otherwise.
It's easy to say "don't worry" when it's not happening to you. But in this case I totally get it. Trust, have Faith and give it to God.

I learned that there can be moments of humor starting during the super tense times of pre-surgery right up to today and hopefully beyond. Yes, I hope there are those times for everyone! I will share two. The day after surgery I was taken to my room. Later that day I was helped to sit in a chair. A couple of hours later a troop of staff came in and asked if I would like to brush my teeth. (Golden Rule for Patients: Never say no to anything that will get you discharged on time.) Of course I would love to brush my teeth! All of those people grabbed machines, drains and whatnot and I walked slowly to the bathroom and brushed my teeth. Then we trekked back to the chair. Ok, I did it! A couple of hours later another group came in and asked if I wanted to go for a walk. I said I already did - to the bathroom to brush my teeth. The reply was "That doesn't count." LOL! I did walk to the nurses' station and back. The other chuckle happened after the post surgery diet, I got a menu. Perhaps, in restaurants, you have seen hearts next to items with less salt and fat. At Mayo, there are faded hearts with a more faded line through them printed next to the menu's UNhealthy items. (You call the number on the menu at Mayo to order your meals.) I see yummy things like bacon, pizza and the like with these hearts next to them and was elated that at Mayo they are heart heathy foods! YAY! Then I noticed the very faded lines through the hearts, it was like reading the fine print stating things that put the brakes on something good or fun. Aw shucks. There will be lighter moments during your very serious journey.

@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.

Over time my cardiologist noted that echocardiograms showed increased thickness and had talked about surgery for several years and warned me about the possible consequences of HOCM. I was feeling fine. Doing everything I wanted to do. You have to be kidding. Elect to have open heart surgery? No way, even if I was slowing down. No pain, slightly out of breath walking and biking on hills - very active lifestyle here. Then, one night in 2/22 I woke up feeling sick, passed out on the way to the bathroom. Catherization showed no heart attack, clean arteries. Cardiologist had been worried that this might happen. Told me that it was important to have surgery (septal myectomy), or my family will miss me. So I did in 7/22 at Mayo. Camzyos was never mentioned, gradient too high, anyway, cardiologist later said that the research showed patients generally eventually need surgery. It was hard breathing anytime I was walking for 5 months waiting for the big day. I also knew no one with HCM even though 1 in about 500 people have it. One of my nurse friends said to have the surgery while I was healthy enough - excellent advice. Your cardiologist seems well versed in HCM, be sure to have your surgery at a COE when the time comes. Let us know how you are doing during the times ahead.

Thanks! What is a COE?

Center of Excellence. These are the places noted for exceptional care. Mayo is considered a COE for HCM, probably other things, too, thousands of septal myectomies have taken place there since 1959. There are several other COE places, you can research that. The successful outcomes at COE places are notable because of the expertise of those performing the surgery as well as the support staff. Just as you look for a good mechanic for your car, you want the best for your heart surgery. People travel to COE places for treatment from all over the world. As you plan for your possible future surgery, it's another piece of information to consider.

Sending prayers and love dear Debra ❣️