What I Learned From My Open Heart Surgery

Posted by Debra, Volunteer Mentor @karukgirl, Mar 13 11:39am

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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

@oliviasoma

I am edging closer to surgery date, June 11. I try not to think about it, but it creeps up on me. Disrupts my sleep, bad dreams, don't want to go to sleep. I am at peace with the death possibility..I feel the Lord is going to take me home on his terms, not mine. When it is my time, it is not going to matter if I am sitting at home or on the operating table. He gives us the good sense and strength to take care of ourselves, and I am leaving the rest up to him. However, this does not make me less nervous inside. My husband had a quadruple bypass 16 years ago and we joke that we will have our 50th anniversary and matching scars!! Trying to find the lighter side of a situation out of my control. I know in my mind that I am at the best place I could be, I know in my mind that I have no choice but to have the surgery..I need the fix, I know I have a high pain tolerance, I know I will get past this and succeed in good health, I know I have a great husband and support group at home, but I am still nervous inside. I try to read the literature sent, I try to watch the videos, I try to get my mind right, but these things only make me more anxious, so I had to quit. Can you say nightmares. I have the hotels booked, I have completed all pre-appointment paperwork, the dentist has cleared me, Rhonda has all she needs from me. These things I can control and put aside. It is the unknown that I am having a hard time with. I know I should not worry but my life has been so easy and worry free, that I really don't know how to handle the stress of this. The thought of being symptom free, no more shortness of breath, irregular heartbeats, dizziness, pain in chest and back is awesome and I love the idea of not worrying about my heart giving out all the time. These things do limit the enjoyment of life. I have livestock and I have always taken care of everything, and I cannot do it by myself any longer. Thank goodness for my kind husband who helps me. I have to stop often and catch my breath or sit down for the dizzy to go away or my heart to calm down. I can't wait to come back on here in a month and say what you did..the problems were created in my head, and it was not as bad as I was dredging up!! That I made it worse in my mind that it really was and each day is better than the day before. Thank you for all the encouragement and God Bless us all. Sharon

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@oliviasoma
You put everything into perspective that I would bet every single person facing open heart surgery feels!! Or any big surgery for that matter.
It's easy to say "don't worry" especially when you know Who holds the future...but we are human and God made us the way He made us, and we do fear. We are told to "cast our cares on Him, because He cares for us" and that is true. We know it. But fear is a influence from the enemy. The enemy wants us to fear. When we fear, we are not trusting.
Fear of the unknown is real. But all that list you stated?
Best place
Best husband
All plans made
Dental clearance
Great support
Life without HOCM
And most important knowing the Lord...keep holding on to that!
Look forward to all you will be able to do again.
I know. It's easy to say. I look back and felt the exact same as you. Like a sheep going to slaughter. But it was not slaughter. It was a new life free of the hideous HOCM. I got my life back! And you will too. It may be hard to imagine but it is worth hoping for.

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Look how many time God had told Joshua to be strong and be courageous in Joshua 1

Let this be a reminder to us all when we face the enemy!

Joshua 1:9
Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

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@karukgirl

@oliviasoma
You put everything into perspective that I would bet every single person facing open heart surgery feels!! Or any big surgery for that matter.
It's easy to say "don't worry" especially when you know Who holds the future...but we are human and God made us the way He made us, and we do fear. We are told to "cast our cares on Him, because He cares for us" and that is true. We know it. But fear is a influence from the enemy. The enemy wants us to fear. When we fear, we are not trusting.
Fear of the unknown is real. But all that list you stated?
Best place
Best husband
All plans made
Dental clearance
Great support
Life without HOCM
And most important knowing the Lord...keep holding on to that!
Look forward to all you will be able to do again.
I know. It's easy to say. I look back and felt the exact same as you. Like a sheep going to slaughter. But it was not slaughter. It was a new life free of the hideous HOCM. I got my life back! And you will too. It may be hard to imagine but it is worth hoping for.

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Thank you..I just go back and forth as someone else state..maybe you. From peace to terror..yes it is my faith..the lord on one shoulder, Jeremiah 30:17, “for I will restore health to you and I will heal you of your wounds” and the ole devil on the other shoulder putting doubt in my faith. I am only a mere human and have to fight daily to keep the faith. I know I am in good hands, I know it will be ok, I know all this and realize it is normal to be scared..I would be a fool not too. But I keep the mantra that I am making it more than it will be. I am going to be on this support group in a couple of months saying the same thing you wonderful people who have gone through this are saying..I can’t wait!!! Thank you for the encouragement, it helps! Sharon

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My extended myectomy is July 15, and I am at peace about the surgery. What I am worried about is afterwards. I don’t know what the restrictions will be. How long will arm movement be limited? When can I sleep on my side again and feel more normal?

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I am so, so glad that @ginabassford @oliviasoma @brumasterj are communicating in the same place. All are ready for their big days coming up in June and July which will set them on their roads to resuming the lives they were leading before HOCM got in the way. Nervous (not a strong enough word) and at peace at the same time describes it all. Your preparedness is remarkable. @ginabassford, please be assured that you will be in the best hands. Each of us had a different recovery, remember that this is major surgery. I thought mine went easily; I was in otherwise good physical shape. You do need to keep upper arms against your body, but I was able to cook (hubby got the pots on the countertop and nothing weighed more than 5 pounds) and do other things once home a week after surgery. No driving for 4 weeks (an accident could do damage to your incision if you bang into the steering wheel). I was most comfortable sleeping in a recliner for a while, it may be a little while before side sleeping, you will have your own instructions and "inner checks" on when you could resume side sleeping. Feeling more normal - it takes at least several weeks. I tell people to not compare today with yesterday which can be up or down, instead, compare today with one week ago and then you realize how much progress you have made. By 6-8 weeks after, life was generally back on track, it takes a longer or shorter time for others. You can resume some things before 4 weeks, I played Mah Jongg again at about 2 weeks after. Do read all of the entries in this What I Learned From My Open-heart Surgery topic!

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I guess im one if those guys who can mentally block things out leading up to the day!
I try not to think about the before or after just let it come as it may be!
I know there will be some anticipation as the day gets closer but for now im ok 20 days away from surgery day!
I wished i could tell people my secret but its by design im sure, i have never been one to let my thoughts get out from in front of me!
Best of luck to all who are approaching their day!
And thank you all for being honest

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@brumasterj

I guess im one if those guys who can mentally block things out leading up to the day!
I try not to think about the before or after just let it come as it may be!
I know there will be some anticipation as the day gets closer but for now im ok 20 days away from surgery day!
I wished i could tell people my secret but its by design im sure, i have never been one to let my thoughts get out from in front of me!
Best of luck to all who are approaching their day!
And thank you all for being honest

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@brumasterj please update us regarding how you are doing. You will be blazing the trail for the rest of us who are waiting for our day!

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Your story is a lot different from my husband. He had triple bypass.. widowmaker was 99% blocked and two others 90% blocked. 70 yrs old.
I’m a retired nurse.
I told him.. don’t forget to ask for pain med if u need it. They won’t just give it to you.
He had pain med day 1.. they pulled his chest tube out 12 hrs after surgery and made him walk with assistance.
He kept saying he had no pain and wanted to go home. They sent him home on day 4. This guy never had any pain!! I was amazed!
He did have some redness around where they removed a vein in his leg , that actually swelled a bit and was his worse discomfort. No back pain.. nothing. It was unbelievable to me. Just walk when u can , drink plenty of water , rest when u need to!

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