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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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For my kidney tumors open surgery, my surgeon recommended sticking around Rochester for 3-4 days after discharge. Maybe ask your surgeon?
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1 Reaction@oliviasoma ,
I see you are new here on Connect, so welcome aboard!
I tried to share my story and emphasize the part where I made it a huge and scary deal...in my mind! It was scary, but it was much worse in my head versus reality.
Since you had back surgery and know how you did after that, let that be your guide.
You don't have a Masters in Human Biology because your not smart, you are very smart.
And you mention you have the Lord. So give it to Him. Put it in His capable hands. I had to do that myself. I would give it to Him and take it back. Give. Take back. Many times. But finally I had peace.
You cannot be in a better place in the world than Rochester Mayo Clinic. They truly are the finest in the world and your care will be unbelievable. The nurses are like angels.
To answer your question about shortness of breath after surgery. YES! One hundred percent my shortness of breath was gone after surgery. So was the pounding, tachycardia, PVCs, and fatigue. I still have issues when I lose my ability to control my food portions. That's a nice way of saying when I can't stop eating something because it tastes so good, I pay for it. Think like a Thanksgiving meal portion wise.
Driving in stages sounds like a great option. I had to fly because I am in California. I also have a 2.5 drive to get to the airport, so it was an exhausting trip home. Being able to stop, walk around, stay overnight and drive the next day is a wonderful way to get home.
We stayed an extra two days, which was only because I was afraid to leave the Mayo area. It was again, all in my head!
You have many blessings. Being healthy before this is one of the tops. And going to Mayo Clinic. You will not get better care.
Do not let your thoughts control you. You can control them instead.
I hope the post I made was helpful to you otherwise.
It's easy to say "don't worry" when it's not happening to you. But in this case I totally get it. Trust, have Faith and give it to God.
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1 ReactionI learned that there can be moments of humor starting during the super tense times of pre-surgery right up to today and hopefully beyond. Yes, I hope there are those times for everyone! I will share two. The day after surgery I was taken to my room. Later that day I was helped to sit in a chair. A couple of hours later a troop of staff came in and asked if I would like to brush my teeth. (Golden Rule for Patients: Never say no to anything that will get you discharged on time.) Of course I would love to brush my teeth! All of those people grabbed machines, drains and whatnot and I walked slowly to the bathroom and brushed my teeth. Then we trekked back to the chair. Ok, I did it! A couple of hours later another group came in and asked if I wanted to go for a walk. I said I already did - to the bathroom to brush my teeth. The reply was "That doesn't count." LOL! I did walk to the nurses' station and back. The other chuckle happened after the post surgery diet, I got a menu. Perhaps, in restaurants, you have seen hearts next to items with less salt and fat. At Mayo, there are faded hearts with a more faded line through them printed next to the menu's UNhealthy items. (You call the number on the menu at Mayo to order your meals.) I see yummy things like bacon, pizza and the like with these hearts next to them and was elated that at Mayo they are heart heathy foods! YAY! Then I noticed the very faded lines through the hearts, it was like reading the fine print stating things that put the brakes on something good or fun. Aw shucks. There will be lighter moments during your very serious journey.
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1 Reaction@walkinggirl I noticed you said that your HOCM became suddenly worse. Mine just did that about 8 weeks ago. It was completely out of the blue, like one day I was doing fine 3 years after the diagnosis, and the next day I had shortness of breath, chest ache/pain, exhaustion etc. My cardiologists did an echocardiogram and it did not show any obstruction. So they were doubtful that the problem was HOCM but while I was looking for other causes (pulmonologist and other docs trying things out and testing), my cardiologists eventually did a cardiac catheterization and checked pressures and gradients on left and right sides of my heart both at rest and when they sped up my heart with medication injected during the procedure and that test did show the obstruction. They were surprised that it didn't show on the echocardiogram. Then I started jumping through all of the hoops to get Camzyos. That process took up so many hours of my life just to get the first 35 pills. A million calls etc. And as the end of the first month on Camzyos began to get closer to ending, I needed to make another million calls and have another echocardiogram so I could get the next 30 pills for the coming month. I'm still working on that and have only 6 pills left. They won't set up delivery unless you do all of this AND have 7 or less pills left. Very stressful worrying I won't get the delivery on time and will miss doses. And because the medication is so new, the doctors aren't aware of how much of this falls on the patient or of many of the side-effects. But the Camzyos did relieve the symptoms (so far). I know it's temporary relief and that eventually my heart walls with continue to thicken and make it a life-threatening situation. Anyway, when you said your HOCM became suddenly worse, I felt less alone--this is the first time I ever heard anyone say they had the same experience I had--I don't know anyone else with HOCM which is why I'm on this bulletin board.
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1 ReactionOver time my cardiologist noted that echocardiograms showed increased thickness and had talked about surgery for several years and warned me about the possible consequences of HOCM. I was feeling fine. Doing everything I wanted to do. You have to be kidding. Elect to have open heart surgery? No way, even if I was slowing down. No pain, slightly out of breath walking and biking on hills - very active lifestyle here. Then, one night in 2/22 I woke up feeling sick, passed out on the way to the bathroom. Catherization showed no heart attack, clean arteries. Cardiologist had been worried that this might happen. Told me that it was important to have surgery (septal myectomy), or my family will miss me. So I did in 7/22 at Mayo. Camzyos was never mentioned, gradient too high, anyway, cardiologist later said that the research showed patients generally eventually need surgery. It was hard breathing anytime I was walking for 5 months waiting for the big day. I also knew no one with HCM even though 1 in about 500 people have it. One of my nurse friends said to have the surgery while I was healthy enough - excellent advice. Your cardiologist seems well versed in HCM, be sure to have your surgery at a COE when the time comes. Let us know how you are doing during the times ahead.
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2 ReactionsThanks! What is a COE?
Center of Excellence. These are the places noted for exceptional care. Mayo is considered a COE for HCM, probably other things, too, thousands of septal myectomies have taken place there since 1959. There are several other COE places, you can research that. The successful outcomes at COE places are notable because of the expertise of those performing the surgery as well as the support staff. Just as you look for a good mechanic for your car, you want the best for your heart surgery. People travel to COE places for treatment from all over the world. As you plan for your possible future surgery, it's another piece of information to consider.
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3 ReactionsSending prayers and love dear Debra ❣️
Wow… that’s quite a story. I’m still in the process of doing pre op tests but I am really scared. I have a lung condition COPD which makes my surgery high risk. After reading fluid on lungs, collapsed lungs that scares me even more. And no pain medication… did they finally give you some pain medication?
What is the Lovenox ? And what does it do. ?
Thank you for sharing your story..
I’m glad your surgery was successful..
God Bless You
Hi Debra
Thank you for sharing so much! It is very helpful to hear the full spectrum of everyone’s story, knowing that everyone’s journey is different. At first I was really excited to think about my symptoms being alleviated and increase my quality of life but I am getting more nervous as my date of May 16th is coming soon! I am becoming most nervous about the potential back pain some people speak to it but not many. I tend to have lower back pain a lot even though I try to stay limber and I am active. Stretching now on a regular basis is the only thing I can think of that might help. Do you have other ideas on hindsight? Back pain is just the worst especially when you don’t feel well anyway.