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.

@lindalee88

Thank you so much for reaching out. I’m having my surgery at Mayo Clinic in Phoenix. I have an appointment in the 15th of April for a breathing test and on the 16th I meet my pulmonologist and then she will go over the breeding test results. In the meantime, I am doing breathing exercises at home. I have several devices that I am using. I’m trying to build my lung function up as much as I can.
I also have very bad arthritis in my neck and in my back and I am on oxycodone. I take it as needed, but I did explain that to my doctor so I told him Tylenol isn’t gonna do anything for me so he said he would give me pain medication if I needed it.
My major fear and concern is that my lungs don’t start breathing on their own after the surgery and I end up on a ventilator. I have a girlfriend who was a critical care nurse and she has been telling me that they will just keep trying to get me off that ventilator and try to get my lungs breathing on their own. That is my major fear !!! I am literally terrified but I do find comfort in knowing that I will be at Mayo Clinic. May I ask you .. if I do wake up with a lot of fluid in my lungs how will they get rid of it?
Again thank you again for reaching out. I greatly appreciate it

Jump to this post

You are asking good questions! I was told to cough while semi-leaning over a pillow. Also, using a breathing device, it would not surprise me if it was one of the ones you are now using. I am surprised that you are going to Phoenix, I did not know that septal myectomies were performed there. Maybe you are having a different surgery?

REPLY
@walkinggirl

You are asking good questions! I was told to cough while semi-leaning over a pillow. Also, using a breathing device, it would not surprise me if it was one of the ones you are now using. I am surprised that you are going to Phoenix, I did not know that septal myectomies were performed there. Maybe you are having a different surgery?

Jump to this post

I need a mitral valve replacement
I went to Mayo Clinic in phoenix and that is where they will go my surgery… I am doing coughing exercises and breathing exercises with devices. I have an AIR PHYSIO and a Respiratory trainer and i also have the devices with the balls and something called THE BREATHER. I have several devices… I’m doing everything I possibly can to help my lungs. Also doing Yoga. I have a breathing test at Mayo in Scottsdale on the 15th then meeting the doctor and going over the results on the 16th
I’m also hoping that she can share with me anything else I can do to get my lungs into shape.

REPLY
@lindalee88

I need a mitral valve replacement
I went to Mayo Clinic in phoenix and that is where they will go my surgery… I am doing coughing exercises and breathing exercises with devices. I have an AIR PHYSIO and a Respiratory trainer and i also have the devices with the balls and something called THE BREATHER. I have several devices… I’m doing everything I possibly can to help my lungs. Also doing Yoga. I have a breathing test at Mayo in Scottsdale on the 15th then meeting the doctor and going over the results on the 16th
I’m also hoping that she can share with me anything else I can do to get my lungs into shape.

Jump to this post

https://www.heart-valve-surgery.com/hospital/mayo-clinic-arizona
Hi @lindalee88,
I found this online regarding mitral valve replacement at Mayo, Phoenix, AZ.
The Mayo Clinic is rated the top cardiac surgery hospital(s) in America, so it sounds like you are going to be in good hands.
Because your team will know all about your lung condition before surgery, they will be well aware of what to expect post op. Breathing is important! It is in fact vital...so I don't blame you for being worried going into this with a lung condition, hopefully you will get some good information after you go over the results of your testing that will ease your mind a little.
Do you have a list of questions written down that you can ask at your appointment?
Do you have another person that can go with you to your appointment? Sometimes we stop listening when we try to process all the things that are coming our way at once...having someone with you can be helpful, because they can fill in the blanks we may miss.

REPLY
@karukgirl

https://www.heart-valve-surgery.com/hospital/mayo-clinic-arizona
Hi @lindalee88,
I found this online regarding mitral valve replacement at Mayo, Phoenix, AZ.
The Mayo Clinic is rated the top cardiac surgery hospital(s) in America, so it sounds like you are going to be in good hands.
Because your team will know all about your lung condition before surgery, they will be well aware of what to expect post op. Breathing is important! It is in fact vital...so I don't blame you for being worried going into this with a lung condition, hopefully you will get some good information after you go over the results of your testing that will ease your mind a little.
Do you have a list of questions written down that you can ask at your appointment?
Do you have another person that can go with you to your appointment? Sometimes we stop listening when we try to process all the things that are coming our way at once...having someone with you can be helpful, because they can fill in the blanks we may miss.

Jump to this post

Hi …yes I do have my list of questions started. Im taking all my breathing devices with me to show the doctor exactly what I’m using. I don’t have anyone to go with me but I record the conversation and write things down so I can remember what was said. It’s hard to remember everything that’s is being said.
I feel extremely blessed that I am able to go to Mayo Clinic with my insurance.
I’m going lots of breathing exercises so when I do my breathing test on the 15th it will give me good results 🙏🏻🙏🏻🙏🏻
Thank you so much for taking the time to chat with me… I appreciate it so very much. All my friends here in vegas work and have their own families.. everyone’s so busy. It’s nice to chat with someone who’s been thru this.
Where did u have surgery?

REPLY

Debra
Excellent assessment about what open heart surgery is about. This was pretty much my experience also. Had replacement in 2020 with MAZE procedure to correct afib and been doing great ever since. It's scary as hell but totally worth it. I had virtually no pain, that I can recall as I was in ICU for 4 days.

Love this support group. There are also Facebook groups which were a great resource for me pre and post surgery.

REPLY
Please sign in or register to post a reply.