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?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
Nice to read positive things.
No caffeine?!?! For how long?
@ginabassford, I had a full on Starbucks from the lobby of my hotel the morning after my discharge from St. Mary's.
I was not given instructions regarding no caffeine, so perhaps this is a question to ask your care team?
I also had wine with my dinner the night of my discharge. I felt like I earned it!
I did not need a walker or any devices to get around, again we are all different, with different co-conditions so post op instructions may differ patient to patient.
No driving for a month is a hard rule I believe, as the sternum needs time to heal, just like a fracture would. I was almost afraid the first week to even be in the car...what if there were an accident and the airbag went off? But I worried for naught!
There are many helpful suggestions here on Connect that are useful for those getting ready to go through open heart surgery...each one of us who has gone through it has their own unique take on the process...take for instance a lounge bra. I was thrilled to have mine, and others didn't even wear one! See? We are all different.
As Debra, @karukgirl pointed out, we are so, so different! It makes for interesting reading. While she had no restrictions on caffeine and alcohol, I was told that caffeine stimulated my heart, and I was to give it time to heal. I think it was for 6 weeks. I love my coffee dark and strong! Do ask! Alcohol - no stated restrictions, I enjoyed my light beer or wine as I always have - I am sometimes (yes, I go from one side of the "line" to the other regularly), prediabetic and need to be mindful of carbs and regular beer is loaded. As to the walker and bra - we are all different, indeed! We drove home and stopped every 90 minutes - two hours at rest areas. I know I would have been absolutely fine without the walker, but at Mayo they insisted that I have one, I did use it just because I had it! My husband was more willing to let me walk around solo and use the facilities in private because he was afraid that I would fall. As you can see, these details are so individual and when the time comes, your unique needs will be discovered.
I couldn't agree more!! Such great incite @walkinggirl! If what we share can help even one person on Connect, then it's all worth it!
Thank you for sharing your experiences. I have open heart surgery coming up. I vacillate between being terrified and wanting to be fixed. Your advice and experiences have been helpful. I have rethought what I’m taking with me and what I need to do to prepare my home for my return. Thank you again.
Hi @shadow220, it looks like this is your first post. I am so glad you are here and really happy that by sharing experiences here on Connect you have found some helpful tips for your upcoming open heart surgery.
I know the feelings you describe. I think unless you have gone through this experience, it's hard to imagine the fear, the determination, the thoughts that crowd your mind... it is a big deal, but your are already stronger than you know! You made the decision to go forward and claim your life back.
When is your upcoming surgery? And where is it being done?
I had an emergency double bypass 8 years ago. I’m in much better shape now than I was when I was 55. It wasn’t easy but I don’t think I would have survived without it. Now I have been diagnosed with HCM and may have to eventually have a myectomy. I don’t dread the future.
Nine weeks out from my septal myectomy at Mayo. I have so much more energy, I didn't realize how I diminished I had become. I wish I had pursued this a long time ago.
Isn't it the human reaction to put something off such as a septal myectomy, knee replacement, acquiring hearing aids, cataract surgery... and then after it's done, wonder why it did not happen sooner? Unless it's life-threatening, our fears overwhelm our logical thinking. Gee, we are so human! I am glad you are doing well and wish you a continued happy recovery. It was over a year after my septal myectomy that my cardiologist noted that my heart murmur had "quieted down, " it takes a very long time to heal completely even as we feel energetic and happy so much sooner.