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What I Learned From My Open Heart Surgery
Don't Be Scared...It's Just Open Heart Surgery!
If you are reading this because you have learned open heart surgery is in your future, for any number of reasons, not just HOCM, I wish to put your mind at ease.
Of course you are scared!
Any normal person would be, so rest assured, it would be abnormal to not be afraid.
Having gone through and survived my own open heart surgery, I want to reassure you that most likely, the thoughts you have conjured up in your mind are far worse than the actual operation and the ensuing post operative period. I had a wild imagination and practically tortured myself with thoughts of doom.
The good news is you are completely asleep through the entire event and will not feel a thing. You are made comfortable before they even begin, and the only pain before surgery is most likely caused by the IV they place pre-op.
It goes without saying that any surgery will have pain associated with it, so my advice is to get comfortable with being uncomfortable for a while. Each person has their own unique and individual response to pain, stress, and things unknown.
Having something you can turn to that brings you peace or comfort, whether it be God, meditation, a hobby or craft you love, will help you immensely as you prepare for your own open heart surgery. As difficult as it may be, try and focus on doing things that make you happy. Do not let fear take over your thoughts. Your thoughts are yours and you can control them!
I'd like to share my story, offer some helpful tips and maybe provide a guide to getting through this. And to gather insights, tips and stories of other members too, because no two experiences are alike.
What I was Not Expecting:
I was not expecting that the day before my surgery, after my angiogram/heart cath, I would not be able to walk. This made me very unhappy! If they had used the radial artery, instead of the femoral artery, I would have been able to walk. This totally set me aback! My plans to leisurely stroll the neighborhoods around St Mary's that evening, thoughtfully pondering my open heart surgery in the morning were blown up! Instead I was confined to a wheelchair and had to be pushed around to the lobby for my last supper.
On Connect people talked about back pain after surgery. I just glanced at those statements. They did not register.
Wow. It was a real thing for me. Not the first day in ICU, but the next day and each day after that for over a year! I do not want to scare anyone, but this back pain is real and I wish I had paid attention so I could be prepared. It's from all the torque in the front going to the spine. It was relentless and persistent. I gives you a different place to focus where your pain is coming from. All directions! I have worked in hospitals for over 42 years. I worked remotely and figured with a desk job I would be able to go back to work pretty quick...like 6 to 8 weeks. I was so wrong. The back pain was so disabling I could not sit. Who knew! A desk job and you can't sit!
I can't say it enough, each person is different. This surgery will affect each person in different ways. Most all open heart surgeries have common post-op conditions. I won't call them complications, because they are so common. Anemia from blood loss. Pleural effusions (fluid around the lungs). Atelectasis (collapse of lung). Sometimes pneumonia. Wonky labs. Be prepared and don't be scared, these are again, common.
I was not expecting my sternum to look like it did after the wound vac came off. It was gnarly looking at the top. A big, huge twisted knot looking alien on my chest. I was reassured by the nurses it would heal and look normal. They promised. They were correct. It took several weeks to settle down and the alien to disappear.
I was not expecting the Lovenox shots in my stomach every day.
I was not expecting to only get Tylenol for pain. It did basically nothing for me. I wish I had done a bit more advocating for pain control. They don't want you getting addicted to pain pills, but there is a time and place for them...and this would be one. There is some new non-opioid on the market now, Journavx (suzetrigine) I wonder if they can use it for better pain control in the hospital? Ask!
I was not expecting that I could not wear nail polish. Seriously? At least not at the Mayo! This fact set me back a step or two because I was totally planning on pampering myself for a rare mani/pedi before open heart surgery. Dang! No pretty toes post op for me.
What I Wished I Had Known:
I wish I would have believed I was stronger than I thought I was. I made this a HUGE deal in my mind that loomed over me the months and weeks ahead of my operation. It was not as terrible as my thoughts made it out to be.
Will I be able to fly? Yes. With lifting restrictions.
Will I be able to walk around? Yes. You must walk around. As much as possible. Right after surgery and every day after.
Will I be able to do anything but just sit around? Yes. Little chores that don't require big arm movements or heavy lifting. Like light cooking. Or folding your clean washcloths. Your stamina will be low for awhile. Some days a shower and walk to the mailbox was all I wanted to do.
Will I be able to drive? No. Not for at least four weeks. Prepare to count on others to drive you where you need to go.
Will I be able to cook? Yes! Just don't reach too high or lift more than your restrictions.
Let your pain be your guide. Listen to your body. You know you better than anyone else.
If you are tired. Take a nap.
Eat healthy. Drink water. Your body is healing from a BIG surgery and needs good nutrition and water.
I drank a glass of wine the night I got out of the hospital!
Was it fun? Oh goodness no! There were nights alone in the hospital I thought would never end.
The bed was hard. The pillows like a rocks. The food was blah. Sleep is elusive. Tubes and wires and machines surround your bed. People show up at the weirdest times to do vitals or take blood for tests.
But slowly, each day, another tube comes out. Another line is taken out. Another machine goes away. You sit in the chair more. You thank God for His blessings.
I brought a book to read...but I was so tired I could not even hold it. My significant other read to me. I had my iPhone with me, but the first few days were too hard to talk to anyone.
In the End, it was Worth it!
I share my story with the hope that something will help you pack better, be prepared better, and know more than you did before you read this!
Knowledge is power. Know before you go!
This is my story. What's yours?
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@mbharris dont hesitate to reach out to me if uou need to visit!
Im 57 been dealing with hcm issues for a number of years till they finally diagnosed me last dec!
Im very active mountain bike hubting walking hiking, used to run but side effects from HCM stopped me from running and finally started slowing me way down on my bike before i finally found out what was wrong! Camzyos helped to an extent but would not allow me to ride hard!
Had surgery in june
Stayed across street from hospital we was told to plan for 14 days ended up staying 11
Been off work for 5 months the pain in my chest just never got better had a CT done two days ago and my sternum never fused!
So waiting to see what mayo would like to do!
Please dont let that scare you from having the surgery because i could tell a difference as soon as i started climbing stairs!
Im just one of the very few un lucky ones the sternum did not fuse!
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3 Reactions@brumasterj Thanks. I too was pretty active before HCM hit me as well. I used to scuba dive, go on hikes with the wife and dogs, and even enjoy working in the flower beds pulling weeds (maybe not that) 😀. I have been on Camzyos for almost two years and it has given relief, especially as I have stepped up the dosage, but it never relieved the symptoms. I’m so ready to stop thinking about my heart issues, being out of breath and dizzy at times, but even feeling the beating and skips of the heart. The septal myectomy procedure sounds pretty straightforward along with recovery in the hospital. As you know with HCM you always seem tired and not able to feel recharged even when resting from a day off of work. So I know recovery at home will take some time but not looking forward to having unwanted pain and all this walking after surgery I’m hearing about. It’s part of it I know but…are there any things I can do to help speed it along?
Oh also curious, stopping Camzyos prior to the procedure did HCM symptoms seem to get worse than prior to starting? I have four weeks to surgery and trying to figure how things might be before then. Thanks
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1 Reaction@mbharris i promise thenpain is bearable it sux but its bearable the worst part of the pain for the first 4 weeks is getting in and out of bed but once ykur settled in bed your fine until yku need to move again:(
But the discomfort is so worth it! Your dizziness and short of breath will go away so should the irregular heart beats at least mine went away the heart beats i dealt with for about two weeks after surgery they acdounted to having an angry heart
After stopping camzyos the symptoms started slowly appearing about 4 weeks off of it then 3 days before surgery it reared its ugly head with a vengeance, while in rochester we rented the scooters to get around we had no real need for a car rental the scooters made it fun:)
After your released no scooters just walk to a close place to eat!
You have been thru the worse so a little pain will be so worth it!
I belive bu the second day i was off the hard meds and just taking tylenol!
Work with your breathing meter they give you it might help to have ykur meds while doing ykur breathing practice i never did though!
You will be fine I promose:)
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3 Reactions@brumasterj I am sorry to read that you are having a complication. Our lucky hearts had traumatic experiences and this, too, I am sure will be dealt with successfully. Keep us informed.
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1 ReactionThis is the most frightening stuff I've ever read! No way I'm going to consent to open heart surgery now. It's pretty obvious to me that I would have no hope of survival. Might as well just wait it out and enjoy the time I've got.
@ednahanvey what is so scary that would keep you from wanting to live a normal productive life
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1 Reaction@ednahanvey It IS scary, no question about it! My quote is "Fear and Courage!" When I was reluctant to go through with the surgery, my home cardiologist said, "Your family will miss you." I thought it would make them angry if I did not do all I could to help myself, would they ever forgive me for that? I also wanted to set a good example of displaying courage in the face of a very scary event. Yikes! Open heart surgery! Choosing to have surgery at Mayo where the success rate is 99+% put my mind more at ease. I don't know your particular heart status and other concerns, we do not give advice but offer encouragement, please have a talk with a well-versed HCM cardiologist. Wishing you well in making the best decision for yourself and please remember that you may find you have more courage than you ever thought possible.
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5 Reactions@ednahanvey i will be honest with you when my mayo cardiologist broke the news to me about HCM i was relieved to have finally have an answer to what i been dealing with for years!
But then he said surgery is the best thing for you considering ykur active life style! That set me back i was not ready to hear that at all, in fact i consider myself a pretty strong man and when he said that i teared up!
He knew that i was not ready for that starement so he said lets get you on camzyos to get you fewling better and stronger!
So i got on camzyos and started feeling much better with in the week and by a couple weeks i was on my bike slowly but i was on it!
After a few months of being on camzyos i realized it was gonna keep me from living the active life i desired!
I was already on this site and listening to all the stories really lifted me and inspired me to pursue the surgery!
Again im one person with one story but im so glad i did the surgery even with what i call a little set back withe sternum not fusing together!
I know the the help of the mayo it will be fixed so im excited to hear what the next step is gonna be!
Best of luck in ykur decisions:)
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4 Reactions@brumasterj, gosh darn it !
I'm sad that your sternum didn't heal. I used to get a little clunking (for lack of better description) in my chest, and still do on rare occasions, but that is nothing like what you have going on!
I am certain Mayo will get you right back on track. What do they think may have caused it not to heal, or do you know?
Just wondering because it is important to keep your sternum quiet and still for at least six to eight weeks...you know...no lifting, driving, mowing lawns and such.
Will you come back and let us know how things are going and what is next?
Prayers,
Debra
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2 ReactionsHello @ednahanvey, and welcome to Mayo Clinic Connect.
It looks like you are new around here.
I am sorry that reading some of these stories is frightening to you. That is certainly not the reason we share our stories here on Connect. Far from it!
Connect is a warm and safe online community that people come to for information, sharing their story, and a place to learn from others who are on the same path. We are here to encourage each other, lift each other up and support each other.
Do you have HCM or HOCM?
Is that why you say you would never consent to open heart surgery?
Have you been evaluated for open heart surgery?
Just wondering because you mention that you "would have no hope of survival" and think to just "wait it out and enjoy the time I've got."
While considering open heart surgery is certainly a scary thought, others are here to prove that not only is it life changing, but life saving as well.
Sure. It's a lot to process, but so is having just about any surgery!
In the end, it is totally up to you to decide your course, after reviewing all your options and weighing the risks and benefits.
@walkinggirl and @brumasterj are fellow members with inspirational stories and both shared with you encouraging words. I echo their thoughts and hope that you are able to process the information here and discern the value and positivity rather than focusing on fear.
Fear is powerful. Fear can motivate.
In another post you mentioned having breast cancer. To me there is nothing scarier then hearing the "C" word! Yet you faced that like a champion and here you are!
Can you share what brings you to Connect and the Hypertrophic Cardiomyopathy group?
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