themighty logo

11 Things No One Warns You About After Open-Heart Surgery

Like any surgery, before you go in for open-heart surgery they mostly warn you about the risks of surgery. They discuss what could happen during the surgery, things that could go wrong, and anything specific to the type of heart surgery you are having. They speak of recovery time in general terms. I was born with a congenital heart defect called transposition of the great arteries. I still have a mustard procedure in place. After three open-heart surgeries, I have to say they are many things that I wish they would’ve warned me about during my surgeries.

1. Recovery from open-heart surgery takes time.

The suggested recovery time is always longer than what they tell you. While you might be able to return to most regular activities, it can take your body a full year to recover from open-heart surgery and it might even take longer for you to feel back to your normal. My most recent, third open-heart surgery was two years ago and I’m still recovering.

2. Open-heart surgery can cause hair loss.

Be prepared to lose a lot of hair after surgery. I have really long thick hair and I lost a lot of it after my most recent open-heart surgery. There are a couple of reasons why you use a lot of hair after open-heart surgery. One of the big factors with hair loss is the stress open-heart surgery has on your body. Another possibility is because of the long amount of time you are under for cardiac surgery and being in one place which can cut blood flow to your hair follicles. Sometimes medications can be the cause of hair loss. Taking supplements such as biotin and zinc can help with hair regrowth, but make sure to check with your doctor first.

3. Your personality and mood may change after open-heart surgery.

After open-heart surgery, many people experience personality and mood changes. The most commonly experienced emotions are depression, fatigue and anxiety. These can be caused by being on bypass, anesthesia, or medication such as oxycontin. You may experience mood swings like crying or getting angry or easily frustrated.

I mostly experienced this after my second open heart surgery when I was a teenager and my third open-heart surgery. After both of them, I experienced depression, anxiety and PTSD. Before my second open heart surgery, I was more outgoing but afterward, my personality changed and I was quieter and self-reflective. I struggled with suicidal thoughts and mood swings. After my most recent surgery, I finally got the therapy I needed after years of not seeking help. If you are struggling, please find help, be open with your doctor and make sure you have someone to talk to.

4. You may experience collarbone and sternum pain after open-heart surgery.

Sometimes you can have prolonged collarbone and sternum pain. Collarbone pain and sternum pain can be caused by the trauma of the surgery on your body or sternal wires. This pain can be sometimes helped with cardiac rehab or a resternotomy. However, make sure to communicate with your doctor about your pain to make sure it’s normal. After this past open heart surgery, I’ve had a lot of pain and clicking in my shoulders and chest. It’s caused a lot of chronic pain but working with physical therapy has helped me regain strength.

5. A chest pillow is a must.

Having a pillow to stabilize your chest is a must. Most hospitals will send you home with one, but if they don’t, make sure to get one. Chest pillows can help you when you sleep, sneeze, and cough; they have has many uses. I had a pillow with me for almost a year after my last surgery and I still usee one during long trips in the car.

6. Car rides after heart surgery may be uncomfortable.

The ride home from the hospital after open-heart surgery will be hard. Make sure to have your chest pillow and a seatbelt cover as well. You will feel every bump, turn, and stop. It will take some time before it will not be painful to be in the car.

7. Sleeping can be hard after surgery.

It’s hard to find a comfortable position to sleep in. If you are a side or belly sleeper it can be hard laying on your back. Finding your favorite chest pillow will be your savior. You might also experience nightmares for a bit after surgery, but it will pass. If you continue to experience them, speak to your doctor and seek help if you feel like you are experiencing PTSD.

8. After open-heart surgery, you may have a poor appetite.

Usually, this goes away after a couple of weeks. But I remember nothing tasted good. I remember everyone raving about how the hospital food was so great and it all tasted like cardboard to me. I felt the same when I got home. Nothing tasted good, even my favorite foods. Even if you don’t feel hungry, it’s important to make sure to eat well and stay hydrated.

9. You may experience memory loss and/or brain fog.

There are a couple of things that can cause memory loss and brain fog after open-heart surgery. If you were put on bypass, it can cause these issues. It is also called “pump head.”  Post-operative cognitive dysfunction (POCD) can also cause memory loss. Both of these are usually short-term but can have the possibility of long-term effects. For the first six months, I really struggled with memory loss and brain fog. As time went on, it started to get better and I started to regain my memory and wasn’t so foggy-headed.

10. Hormonal changes can occur after heart surgery.

For women, your period can be affected by the surgery. It can temporally or even in cases permanently changed. Your periods can become irregular, heavy, lighter, or more painful. Whenever I’m in the hospital for some reason my body just automatically decides it’s going to have my period even though it’s not that time.

11. Wearing certain types of clothing might be hard during surgery recovery.

Usually in discharge, they tell you to wear button-down clothing for a while, but what they don’t tell you is that your skin is super sensitive and wearing tight clothing even a couple of months after might be hard. For women, wearing bras might be tough. Try to find comfortable sports bras you can unclasp or undershirts. I tend to wear bras now that don’t have underwires and have a t-shirt cotton feel.