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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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I had no pain, therefore no pain medication 24 hours after surgery. Tylenol at night. No nerves in the area I think. As far as COPD, talk to those in charge of your surgery. A heart lung machine is used, ask questions. I don't think you would have been accepted as a patient unless a good outcome is expected! They are the best! Let us know how you are coming along.
Thank you so very much
I’d appreciate you taking the time to get back to me. Yes, this is such a scary thing.
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1 ReactionHello @lindalee, and welcome to Mayo Clinic Connect.
I am so happy that you found this site before your upcoming surgery and I hope that you were able to find information that is helpful on here.
I posted my little open heart surgery story with the hopeful intent that by sharing with others who have not yet had their surgery, they would find a bit more information from those of us who have gone through this.
I do not blame you for being scared! I was too! But I also had worked myself into almost a freak out frenzy over it...without the need to do that! I over thought everything. I think it is normal to do that so you must be normal!
I also don't blame your concern for having COPD going into this. The surgical staff doing this will be well aware of all that, and your care will be guided by their amazing talent at treating patients with all sorts of pre-existing co-morbid conditions.
@walkinggirl shared great thoughts. She has gone through this surgery too, and has some wonderful sage advice. I like that she encouraged you to talk to the surgical team about any of your concerns. I would encourage you to do that same thing. Write a list of all your questions and do not be afraid to ask. You need to know as much as you can about what to expect, and here on Connect, many have shared their stories in order to help others.
I only had Tylenol for pain. I think if I had been a little more assertive, they would have given it to me...but I have never been an assertive person. That's on me! I'm learning as I go along here on the planet.
There is a protocol for open heart surgery at every hospital. They are very similar I imagine and have many things in common. The bypass machine is used to perform the intended surgery while the heart and lungs are at rest, and the machine does the work for them.
It's really common to have fluid in the lungs after this, but your team will be very much aware of your COPD and follow the protocol which is best for you. These teams are amazing and know what they are doing. I know how easy it is to say "don't worry" because any sane person would worry...but I also hope that you have an outlet for your anxiousness.
A hobby you love.
A place you love to visit.
Meditation.
God.
Somewhere to go to find some balance and peace for your weary mind. You have Mayo Connect now...and we are here to help and virtually hold your hand and listen without judgement.
May I ask the name of the hospital where your surgery is scheduled?
Thank you @deanr for your kind words. It really is helpful to read about other people's stories, and you are so right...no two are alike because no two people are alike!
I would be very excited to know that your symptoms will be (mostly) alleviated too!
It truly was like a miracle to me to get my life back. I still have HCM, because it will never go away, but the obstruction is gone and along with it, most all my symptoms.
The back pain.
Oh.
It was a real thing for me. It is not like low back pain at all.
Not even close.
It is entirely something different. I was told it is because of the torque that is placed on the spine when the chest is opened. It's pretty graphic to picture, but I have worked in hospitals for over 40 years and was not put off by the technique. I even watched a YouTube of my surgery. I wanted to know everything.
I had that nagging, relentless back pain for a year. Again...I don't want to scare you. It is what happened to me and not everyone gets this. I have since learned, after my last visit to Mayo a few months ago, that I had healed rib fractures. This is what I attribute my pain to. I had fractures of my ribs in the back. Not fun. At all. And again...not everyone gets this result.
I keep saying it, and I will again...it is totally normal to be scared. Nervous. Anxious. May 16 is next month for goodness sake! You have found this site, and there is some great information on what to expect. I always feel it's better to know than not know what's going to happen. That's just me. Some people just want to get it over with and not know details.
You get to come back here to Connect anytime you want and ask anything you can think of.
Where is your surgery? Is it for HOCM?
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1 ReactionMayo Clinic in Phoenix
Thank you for reaching out to me. Your words give me comfort
Hi Debra
Yes I have HOCM. I will be having a septal myectomy and possible valve repair at Mayo with Dr Dearani. I did a lot of research, AND I have the best PCP in the world- I mean really the best in the world, she met with me multiple times, once on the weekend, she watched videos from HCMA that I sent her, she found the updated 2024 HCM guidelines in the medical literature and helped me to understand what it said, she’s just been really great! I feel very lucky to have such wonderful support.
My story: I teach on a university campus so when I have to walk to my buildings or parking lot etc carrying my backpack with laptop etc I get sob. I was an avid pickleball and volleyball player and started not being to breathe and play like I had previously played and at the same time I was so vey tired. When I found myself taking naps in the evening I knew for sure something was not right. I never have allowed myself to take naps late in the day because it disrupts my nighttime sleep. My cardiologist ( I have HTN) finally sent me for a TEE and I was diagnosed with HCM.
I was told over the phone that HCM/HOCM was my diagnosis and referred to a “heart failure” clinic which just about sent me over the edge. But the clinic docs and staff are really top notch.
I am choosing the surgery because my quality of life is very important to me and I am almost 62. I need to have it now to for the best recovery.
Like a lot of people, the diagnosis makes a lot of sense to me on hindsight. I was always not quite able to keep up with my peers in athletics and the random chest flutters and dizziness make more sense too! I just ignored those symptoms because they were fleeting and random.
So I am looking forward to being able to play the games I love Pickleball and volleyball! It’s my social outlet, my sunshine and outdoors time and my regular exercise. I miss it so much and can’t wait to play regularly again.
I expect to be nervous but I am banking that the benefits will outweigh the few summer months of recovery!
I appreciate all the stories I have read. The more information I have the better prepared I feel. So thank you again for sharing.
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3 ReactionsPeople talk about back pain. I did not experience that at all, I do not know why. My take is that different surgeons may have different techniques (Dr Schaff was my surgeon), or perhaps I have a strong core - back area muscles from my regular visits to the gym. I have been doing exercises like planks, bird dogs, dead bugs, bridges, and crunches at least 3X a week for 10+ years. These are not cardio and I had no breathlessness when doing them.
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1 ReactionYou will love Dr. Dearani! He was in on my surgery.
You will be in the best place in the world for this surgery. I could feel it. I knew it. And knowing I was in the best place in the world really helped calm my nerves.
You are the same age as I was when I went through this. I too lost the ability to do most of the things I loved. Hiking. Walking. Ballroom/Swing dance. Riding my Harley. Yoga.
It took almost five years to get the correct diagnosis, and by the time I made it to the Mayo Clinic for my third opinion, my heart was failing and enlarged and I had no life.
I was told that I was also going to have a valve replacement, which surprised me.
But after surgery the doctors told me my HOCM was so severe it made my mitral valve look like it needed to be replaced, but after the obstruction was corrected, my little mitral valve was A-OK. That's just my story, however, and I only shared for FYI reasons 🙂
I am excited for you that in the not to distant future, your life will belong to you again and it will feel like a miracle. Your decision to have open heart surgery shows you are already braver and stronger than you know. It is a very difficult decision to make. And with your physical health being otherwise great...your recovery will be much easier.
I am so glad you found Mayo Connect!
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2 ReactionsOh my gosh that’s exactly what I needed to hear tonight. Thank you so much Debra!
I am so glad I found Mayo Connect too!
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1 ReactionThank 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