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.

@joyrcc

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.

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How wonderful @joyrcc, and thank you for coming back to let us know.
I remember thinking to myself, "I should be short of breath right now." Or "Wow, my heart isn't pounding a 150 mph anymore."
It's wonderful to rid our bodies of these terrible symptoms and feel decent again. It's just like you said, we just don't realize how "diminished" we are until recover some life back in our life!
What would you say was the biggest surprise in your recovery? Good and bad.

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@karukgirl

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?

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While Mayo Jacksonville is my usual go to hospital my insurance company is sending me to Cleveland Clinic. Surgery is on the 27. I do appreciate reading about other experiences.

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@karukgirl

How wonderful @joyrcc, and thank you for coming back to let us know.
I remember thinking to myself, "I should be short of breath right now." Or "Wow, my heart isn't pounding a 150 mph anymore."
It's wonderful to rid our bodies of these terrible symptoms and feel decent again. It's just like you said, we just don't realize how "diminished" we are until recover some life back in our life!
What would you say was the biggest surprise in your recovery? Good and bad.

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@karukgirl
I guess my worst surprise was the muscle spasms (extremities mostly) I experienced due to my electrolytes being off the first week. My best surprise besides my own experience, was the observations from friends and acquaintances, when I began getting out more. I knew I was struggling before, but as I began feeling stronger, how noticeable it was to others, especially my energy and color.
As I commented previously, I didn't realize how I had diminished I was dealing with HOCM (for 20 years) and wished I had pursued the myectomy sooner.

Again, NO regrets and based on others' challenges recently discussed, I am very grateful my United Healthcare/Medicare insurance covered all but my deductible at Mayo. (My personal thought is it was less costly in the long run than the monthly reimbursement for the Camzyos.)
I am also grateful for the anticipatory guidance from this Connect forum and the Clinic so that was a nice NON surprise.

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@shadow220

While Mayo Jacksonville is my usual go to hospital my insurance company is sending me to Cleveland Clinic. Surgery is on the 27. I do appreciate reading about other experiences.

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@shadow220, the Cleveland Clinic is a Center of Excellence and you will be in good hands there. I'm glad you are able to read about all the wonderful members stories here on Connect.
It's so helpful to have a place to go and be able to share your experiences. You never know who will be reading what you wrote and how you may have helped them.
When is your surgery?
Do you have your list of questions?

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@walkinggirl

I did not have any pain after my septal myectomy. My surgeon was Dr Schaff. During the pre-op interview he noted that ALL patients asked the very same question about pain and to let his team know if I experienced any. @jr72 I attribute it mostly to faithful attendance at my gym where I religiously worked on strength and flexibility for years. I was told by OT and PT that I had strong core and other muscles. Please share if your husband was physically fit.

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He was pretty fit for his age 71.. he did outside yard work and things around the house but never went to the gym.

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@walkinggirl

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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Hello, I am 3 days out of surgery at Rochester Mayo Clinic. A little neck and upper back pain the next day but my husband was able to massage it away..yay. Otherwise, pain management has been fine. The antibiotics did make me nauseous the first couple days but has gone now. I can eat, walking, etc well. I did do core and leg exercises since Feb. I still have chest tubes, going to get out tomorrow and hope to be dismissed on Monday. We will head home on our 12 hour trip, we are splitting it up into two 6 hour segments. Thank goodness it is in the past and I just have to get well. Dr. Dearani did mine. Everyone here is so caring and respectful to each other and patients. Thanks for all the great advice.

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@oliviasoma

Hello, I am 3 days out of surgery at Rochester Mayo Clinic. A little neck and upper back pain the next day but my husband was able to massage it away..yay. Otherwise, pain management has been fine. The antibiotics did make me nauseous the first couple days but has gone now. I can eat, walking, etc well. I did do core and leg exercises since Feb. I still have chest tubes, going to get out tomorrow and hope to be dismissed on Monday. We will head home on our 12 hour trip, we are splitting it up into two 6 hour segments. Thank goodness it is in the past and I just have to get well. Dr. Dearani did mine. Everyone here is so caring and respectful to each other and patients. Thanks for all the great advice.

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@oliviasoma, this post made my little hypertrophic heart so happy!
Like I mentioned, everyday a new tube comes out, a machine goes away, you walk further, and feel a little better. Getting the chest tubes out is a terrific day!! You are so much more free!
There is no place like the Mayo Clinic. I am so glad this is all behind you and there is only a long road trip and healing ahead.
Thank you for sharing this with your Connect friends!
God's blessings,
Debra @karukgirl

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Hello, well, one step forward, two steps back. I had AF earlier today so looks like I get another night at the hospital..will try to discharge again tomorrow.
I had AF last Friday also. They said AF is not abnormal after surgery. Darn it..scary when everyone comes running into your room!! Both times while having bowel movements. I have had no problems the other days and not constipated.
It is assuring the med team are encouraging me to not worry with it, each day as the swelling of the goes down, the chances lessen. But also, it is what it is and another day. We have hotel with check-out Wednesday. If need to stay extra day, then so be it before we head back to Arkansas. Thanks for all the prayers, hope, and concern..gonna take care of business!
Sharon

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@oliviasoma

Hello, well, one step forward, two steps back. I had AF earlier today so looks like I get another night at the hospital..will try to discharge again tomorrow.
I had AF last Friday also. They said AF is not abnormal after surgery. Darn it..scary when everyone comes running into your room!! Both times while having bowel movements. I have had no problems the other days and not constipated.
It is assuring the med team are encouraging me to not worry with it, each day as the swelling of the goes down, the chances lessen. But also, it is what it is and another day. We have hotel with check-out Wednesday. If need to stay extra day, then so be it before we head back to Arkansas. Thanks for all the prayers, hope, and concern..gonna take care of business!
Sharon

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SO MUCH BETTER to be SAFE than sorry @oliviasoma!
Sorry you had a set back.
You're in the best hands possible and they would not keep you if it wasn't in your best interest.
Besides, you get to call in your order once more for some delicious hospital food another day!!
Yum!!
The Hotels in Rochester deal with Mayo Clinic patients every single day. It's what Rochester is all about...they are easy to work with when changes happen. You take care of yourself!!
Hang in there, there's a light at the end of the tunnel!
How good does it feel to get those chest tubes out?

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@karukgirl

SO MUCH BETTER to be SAFE than sorry @oliviasoma!
Sorry you had a set back.
You're in the best hands possible and they would not keep you if it wasn't in your best interest.
Besides, you get to call in your order once more for some delicious hospital food another day!!
Yum!!
The Hotels in Rochester deal with Mayo Clinic patients every single day. It's what Rochester is all about...they are easy to work with when changes happen. You take care of yourself!!
Hang in there, there's a light at the end of the tunnel!
How good does it feel to get those chest tubes out?

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I am taking with a grain of salt!! Already ordered breakfast and lunch for tomorrow. Chest tubes were good..no pain at all..that Stephany is a beast at this. Happy I came here..they are the best. I need a knee replacement..I am thinking about using Mayo for that..have to look into that. Thanks to everyone for the tips and experiences!
Sharon

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