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.

@brumasterj

3 1/2 weeks out from my surgery!
I was in pretty good physical shape before surgery so i do believe it helped alot!
While in the prep room getting my body hair trimmed the staff said they would come and give me a IV sedative that would put me in a partial sleep before being taken back! Nope i dont even remember them giving it to me my wife said i was out before i left the room, for surgery! They also said i would wake up after surgery with a breathing tube but probably would not remember it! They was correct i dont remember it either!
The first day after surgery was a blur in and out of sleep dont remember much except the night was long waking every 1-3 minutes because of machines or because they wanted me taking deeper breaths!
They got me out of bed at 4:30 the next morning to sit in a chair! They was really amazed at how strong my legs were getting to a standing position with no help! Im glad i had strong legs and core because you will not use your arms to help get in and out of bed!
The pain was tolerable but the motion sickness was nasty for me! I dont do well on strong meds!
I felt so sick i was questioning if i made the right decision!
2 days later i saw dr dearani and asked him if i made the rifht decision, he said with out a doubt you made the right decision!
The staff was awesome the beat i ever had treated my wife so well too!
The 1st assistant surgeon came and checked on me regularly and everytime the staff would ask my pain level i would say 2 or 3, he said i really think ykur pain is greater because your not breathing deep why are you not breathing deep? I said because it hurts:) he said exactly when you breath deep what is your pain i said 6 he said we need yku breathing deep so i want to give you a little stronger med to help with the pain! I was on the stronger meds for 2 days then switched to just tylenol.
I believe the motion sickness was from the lasic,
The worst for me was peeing every 30 minutes to 1 hour non stop the whole time i was there 4 days!
I didnt get over the motions sickness till i quit taking lasic which was the next day after being released!
The pain in my shoulders, shoulder joints, lata, and back was pretty good but 1000 mg of tylenol helped!
Im 3 weeks out walking 2.5 miles at 19 minute per mile pace! Shouldrs still sore and sternum feels like some is driving their knuckles into them non stop!
I mowed the yard yesterday but my lovely wife did the bagging:)
I had a few set backs! Racing heart for the first week from time to time up to 162 beats it subsided!
I had to go to ER chest pain on left side not normal pain ended up plural effussion (fluid on lung)
Im doing good and slowly recovering more movement in arms and ahoulders:)
I can tell the surgery worked because when i walk stairs or hills my thighs do not get tight from lack of blood flow!
Yes we will all experience it differently and get thru it with help from our loved ones:)

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It's so nice to read that you are doing well! Yes, yes and yes, going in with the best physical condition possible does go a very long way in your recovering ability. I was told that my leg and core were extremely strong and as you stated, made the post-surgery physical movements seem almost like business as usual. Please do not overdo it, I chuckled when Debra wrote "like a man." It's interesting to read how each of us reports different accounts on our experiences. By the time there was room for me in cardio rehab, I had been going to my gym, the two owners worked in cardio rehab before becoming gym owners and had me do many things. By the time I did go 6 weeks post op, I did not need it - walking 3.1 mph easily, almost back to before surgery weights, etc. My two complications began a couple of weeks after, so be sure to listen to your body, today, tomorrow and forever.

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@walkinggirl

It's so nice to read that you are doing well! Yes, yes and yes, going in with the best physical condition possible does go a very long way in your recovering ability. I was told that my leg and core were extremely strong and as you stated, made the post-surgery physical movements seem almost like business as usual. Please do not overdo it, I chuckled when Debra wrote "like a man." It's interesting to read how each of us reports different accounts on our experiences. By the time there was room for me in cardio rehab, I had been going to my gym, the two owners worked in cardio rehab before becoming gym owners and had me do many things. By the time I did go 6 weeks post op, I did not need it - walking 3.1 mph easily, almost back to before surgery weights, etc. My two complications began a couple of weeks after, so be sure to listen to your body, today, tomorrow and forever.

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Thats great to hear how your healing went and how active you became so fast! My wife continues to tell me im pushing to hard and doing too much:) Not so sure if thats a man thing i been told its my stubborn will:)

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@lesterholland

Yes, not only did I consider it,,,,,,,,,,I paid for a second opinion and I received one in great detail, along with a face to face computer meeting with the writer. His opinion is that my current condition calls for exactly the treatment that I am getting. In short, the second opinion is the same as the first. ....treat the angina medically for as long as possible. However, in my persuing the subject I have learned that removal of arterial plaque is a subject of study and experimentation around the world. The financial incentive is incredible, and small successes were achieved several years ago. Where is the point of the spear, and where do I go for the most advanced treatment?

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Hi @lesterholland,
Were you able to learn any information from the links that @colleenyoung provided?
It must be frustrating to hear the same thing twice. May I ask if your second opinion was from a Center of Excellence (COE) like Mayo Clinic, Cleveland Clinic, or Cedar-Sinai? Or another COE?
I ended up having four total cardiologists input.
My local (who missed my diagnosis totally)
An outside Dr affiliated with the hospital I worked for and 5 hours from home
Cedar-Sinai in CA
Mayo Clinic in MN
I just mention this to let you know that sometimes we have to be persistent and push for more.
You have done your own research, which is great, but now what do you do with it?
Keep going! Did you contact the Mayo? Or have you seen a Dr at a COE?

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@karukgirl

Hi @lesterholland,
Were you able to learn any information from the links that @colleenyoung provided?
It must be frustrating to hear the same thing twice. May I ask if your second opinion was from a Center of Excellence (COE) like Mayo Clinic, Cleveland Clinic, or Cedar-Sinai? Or another COE?
I ended up having four total cardiologists input.
My local (who missed my diagnosis totally)
An outside Dr affiliated with the hospital I worked for and 5 hours from home
Cedar-Sinai in CA
Mayo Clinic in MN
I just mention this to let you know that sometimes we have to be persistent and push for more.
You have done your own research, which is great, but now what do you do with it?
Keep going! Did you contact the Mayo? Or have you seen a Dr at a COE?

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Karuk,
Thanks for your interest and your comments. I've come to understand that while the heart is supremely important to our living, it is really a fairly simple pump that has been the subject of intense and long study by brilliant minds. Peripheral improvments like the Watchman and pacemakers and stents and targeted medications will continue to improve the functions of our hearts and thereby improve and lengthen our lives. My uneducated opinion is that the next great breakthrough will be a chemical that will dissolve the plaque now resident in my arteries. It is a race, and I'm hoping to stay in it until the good guys win.

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@karukgirl

Hi @lesterholland,
Were you able to learn any information from the links that @colleenyoung provided?
It must be frustrating to hear the same thing twice. May I ask if your second opinion was from a Center of Excellence (COE) like Mayo Clinic, Cleveland Clinic, or Cedar-Sinai? Or another COE?
I ended up having four total cardiologists input.
My local (who missed my diagnosis totally)
An outside Dr affiliated with the hospital I worked for and 5 hours from home
Cedar-Sinai in CA
Mayo Clinic in MN
I just mention this to let you know that sometimes we have to be persistent and push for more.
You have done your own research, which is great, but now what do you do with it?
Keep going! Did you contact the Mayo? Or have you seen a Dr at a COE?

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Thanks......the first rerport was from Universty Hospital in Cleveland. Second opinion was from Cleveland Clinic. Third was from a youngish (perhaps 53) Cardiologist in Cincinnati. All three agree that of current available options, medical treatment of symptoms is the best option. One mentioned that if I reach desperation, I might look into a procedure called CHIP, NOT recommended at this point.

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