How to care for someone who just had open heart surgery – from one caregiver to another.

UPDATE: January 22, 2024 – To all of the Nurses out there reading this, I am not attacking any of you. But, I have worked in the OR on severely medically compromised children my entire career and you know not all nurses are created equal! This blog post is from one heart surgery patient’s caregiver to another. Please find it in your heart to respect the fact that this is from one family’s perspective and experience. And I may not use the proper terminology but that is what the doctors and nurses are for right?

My wonderful husband had a widowmaker heart attack (STEMI) on February 21, 2022. He had 2 stents placed on February 22 with the knowledge that eventually he would need bypass surgery.

He struggled for months with a blood clot, pericarditis, and non-stop chest pains. His chest pains increased to the point of waking him from a deep sleep and he was super short of breath completing normal tasks.

We had an appointment with his cardiologist and it was decided to do another angioplasty to place a few more stents possibly. During this appointment, the interventional cardiologist found that his original stents had failed and that she would recommend a CABG (Coronary Artery Bypass Graft).

We were stunned, scared, sad, and mad at this news. But, we had the “luxury” of time. By that I mean we had a week to prepare mentally and physically for this major life change.

Now, for a bit of background, we had been through open heart surgery over 20 years ago with my father-in-law. So in our mind, we thought we had a good idea of what to expect. Now just over five months post-surgery, I can say wholeheartedly that we were not prepared. My hope with this post is to give you some perspective, hope, real-life first-hand experience knowledge, and share some love.

This is not medical advice! I am not a doctor, and this post is my opinion on caring for open-heart patients after surgery. All products featured in this post are what I purchased myself and have been tested in my own household.  All product links are Amazon affiliate links.

Firstly, this is going to be a long post. I will try my best to label the main points of each section for easier navigation of this article.

I’m sorry you’re here but I hope this helps.

There is nothing more I can truthfully wish than having the ability to send you a hug and tell you that I see you and know the plethora of emotions you may be experiencing right now.

The day we found out that my husband’s stents had failed and he was going to need open heart surgery was nothing less than surreal and a gut punch, We had changed our whole life after his heart attack working out four times a week, watching our diet, he stopped smoking, stress mitigation, lowering his A1C, and more to no avail it seemed.

We were defeated! “What the hell did we work so hard for” I kept saying over and over in my head. He was genuinely angry and we were both terrified.

My knee-jerk reaction was to go onto Google and look up everything I could on his condition, surgery, recovery, what to expect after, what should I buy, Ect. And all I Found was article after article from medical facilities. Most of them had the same information and weren’t giving me “real-life” information. I was disappointed but realized that after the dust has settled I can use my tiny blog to hopefully give our real-world experience to you.

My sincere hope with this post is to get you as prepared as possible with first-hand experience so you feel a bit more empowered moving forward.

A week before surgery

We were given a week between his angioplasty surgery and his open-heart surgery. This was a luxury! As far as I could tell most open heart surgeries immediately following a heart attack and you have little to no time to prepare.

During that week we decided to get our house ready, take a mini-retreat, and get our living will and power of attorney in order.

You will be given a huge packet of paperwork with information about your surgery day, what it will be like after surgery, and recovery. In retrospect, this information only scratched the surface of what life was going to be like.

Here are the most helpful things we did pre-surgery that made a huge impact on his recovery:

1. Prepared his living will and advanced directives. You do not need a lawyer for this and it can easily be done through Legal Zoom online. You will need to print the paperwork out and have it signed by two witnesses before your surgery.
2. Cleaned out our fridge and freezer and stocked up with meals that I could quickly make both for when he was in the hospital and during the first few weeks he was at home.
3. Arranged the furniture and moved any tripping hazards,
4. Purchased post-surgery items to help aid in his recovery. (See below)
5. Reached out to people who needed to know. He decided to tell a very small group of people.
6. Took a break from it all.

A living will and Power of Attorney

We are still pretty young so we don’t have a will or have needed power of attorney. When we received the news we were asked to get that in order. I did a quick Google search and decided to go with Legal Zoom.

The beauty of Legal Zoom is all you have to do is put in your information and it will make sure to add all of the pertinent legal information for your state. We decided to make both the living will and power of attorney but you can just do the advanced directive to save money,

Be sure that you have witnesses to sign the paperwork before you go in. Because I was so overwhelmed I waited till the night before his surgery to print everything out. I had no clue that it needed to be signed by witnesses (and you can’t use hospital staff) so on our way to the hospital we swung by my family’s house to have my mom and sister sign it.

I was not prepared for the heavy heart that came with him deciding his fate. I still get sad thinking about how fast our life has changed and the fact that we had to talk about his funeral and his wants after he passed.

Clean your living space and fridge

You very well may not have the time or energy to clean and prepare like you want so take advantage of those loved ones who ask how they can help. I didn’t and I regret it.

I could quite possibly be one of the luckiest humans alive because I have so many people who genuinely care for me and my husband. But I am an absolute bull and more stubborn than I like to admit. I spent hours cleaning out my fridge and freezer, shopping for easy meals for myself, and trying to anticipate what my husband would want to eat after he was back home. It was a good and bad decision overall. My best advice is to buy frozen foods that are a sinch to heat up just for yourself and delegate shopping to someone else after you arrive home because you will not know how the patient will feel and what they will want to eat.

I have had major surgery before and thought that this would be similar but it wasn’t. My husband once at home didn’t want to eat ANYTHING! He had no desire for foods he once loved and all but refused to eat. This created a vicious cycle of low blood sugar, dizzy spells, grumpy attitudes, and stress for me. Be easy on yourself and realize that the patient is in a lot of pain, they are still recovering from anesthesia, and you are doing the best you can!

Create a safe zone in your house

Even though my husband was 44 years old at the time of his surgery he still really struggled to move around with ease. I am happy that I had the forethought to prepare the house and move furniture and rugs before he went in so he could help me move some of the more heavy items.

I made sure to have a large walkway from the bathroom to the bedroom and the living room completely free of rugs and other tripping hazards. The last thing you are going to want to happen is the patient has a fall or even a slip where they have to catch themselves. This could compromise a broken sternum and cause serious complications!

Depending on how your house is set up you may need to rearrange the furniture to accommodate the patient so they can sit and stand with ease. I made a few purchases that made both our lives so much easier and I made some that were completely worthless.

Purchases that you should and shouldn’t make

After doing a bit of research on how he was going to be feeling after his surgery and using my common sense I made several purchases that I would make again a hundred times over and made some that were complete junk!

A set of foam wedges 

This was hands down one of the best purchases I made. It is not cheap but worth every penny. Not only was I able to configure it several ways to have him upright in the bed I could use the wedges on the couch which made it easier for me to help him stand up from a seated position. MUST PURCHASE!

Pillow for After Heart Surgery Recovery 

I wasn’t sure if this was even going to be a useful purchase but I found it invaluable when we were in the car and public. Part of the heart patient’s recovery is walking every day. We had to choose places that were indoors mostly because it was the middle of winter and heart patients get cold at the drop of a hat. My husband didn’t mind wearing this in public and to be frank it looks a little strange so people tend to keep their distance. One of my biggest fears was him getting bumped into or jostled about. He also really hated the heart-shaped pillow that they gave him and this recovery pillow is strapped on so he didn’t have to carry anything around with him. This set comes with a handle seatbelt cushion that we still use even today. PURCHASE IF MONEY ALLOWS.

 

CoolShields Waterproof Bed Pad Washable 34″ x 52″(Pack of 1)

We thankfully did not need to use these but I had them here just in case. I wasn’t sure how fast he would be able to get up to use the rest room so I planned for the worst-case scenario. Honestly, I still think these waterproof pads are handy to have. WOULD PURCHASE AGAIN.

Secopad Non-Slip Bathtub Stickers, 24 PCS Safety Bathroom Tubs Showers Treads Adhesive Decals Scraper

I’m not going to lie. I would buy these over and over again even if it wasn’t for the surgery.

A few years back I broke my leg and was in the market for something non-slip in the bathtub. I made a purchase of a rubber bathmat that I saw on Amazon and promptly learned that those rubber mats slip and slide everywhere! NOT COOL!

Preparing for my husband’s surgery I was on a mission to find a product that actually is non-slip. These stickers are it. I love how easy they were to install and how they are essentially invisible. I have dyed my hair several times and they are still clean and clear as the day I put them in. Yes, they are a stickers so they will eventually come loose but for my money, they are what I will be using moving forward. MUST PURCHASE!

Vaunn Medical Adjustable Overbed Bedside Table With Wheels

Yup, I bought an ugly brown hospital table. My husband took one look at it and said “I don’t know why you bought that I will probably never use it!” Oh yeah!?! LOL! He loves this ugly hospital table. Having an over-the-bed and couch table helped both him and me with his eating, medication taking, being adjustable for comfort, and portability. I 100% recommend it if it fits in your budget. MUST PURCHASE IF IN THE BUDGET.

Juvo Toilet Aid – 18” Long Reach Personal Wiping Aid with Hygienic Cover

So my husband is not going to be happy with me sharing this but I want to be totally transparent. This tool is not that helpful so I would pass if I had to do it again.

I thought that he would be able to wipe on his own but he just couldn’t. Having this tool didn’t make cleaning himself any easier. How did he manage? I wiped him for a little over 3 weeks. After all, it’s through sickness and health, right? We both got through it without any issues. He’s the love of my life and I’d do it all over if I had to. WOULD NOT PURCHASE AGAIN.

30-Day Pill Organizer Monthly

Do yourself a HUGE favor and buy something like this pill caddy. You will be so overwhelmed by the medications, pain management, aftercare, lack of sleep, not eating, trying to apprise everyone, Ect. you will find that having the drugs ready is invaluable!!!! PLEASE believe me when I say you will be so mentally drained that you don’t even know you are until you make a mistake with something like giving the wrong medication. LOVE THIS PURCHASE!

Air Purifiers for Home Large Room Up to 1076 Ft

My husband is not a crier. We have been together now 30 years and I have seen him cry 5 times. Two days post-surgery he sneezed for the first time and he sobbed like a baby. It broke my heart to see him in that much pain from just a sneeze. I knew that I had to buy something to clean our air at home so I could help prevent that from happening. This air purifier is a workhorse! It’s super quiet and powerful. Definitely recommend this little guy. NOT A MUST-HAVE FOR EVERYONE BUT HAPPY I BOUGHT IT.

Essential Medical Supply Round Bath Stool for Compact Showers and Tubs, Height Adjustable

Depending on how the heart patient got to the point of needing surgery you may have already experienced them having a difficult time showering and experiencing shortness of breath. THIS WILL HAPPEN AFTER SURGERY! Having a seat for them to rest is necessary and important for their safety. MUST PURCHASE FOR EVERYONE’s SAFETY.

MAEXUS Jar Opener Kit, 4 in 1 Jar Opener for Seniors with Arthritis

So this purchase was just for me because I knew that my husband wouldn’t be able to open jars and drinks for me. I have used it soooooo much already and am super happy to have it. If you are not the main jar opener in the family I would buy this jar opening kit. NOT A MUST-HAVE IF YOU DON’T STRUGGLE OPENING LIDS.

Taking care of an open-heart patient isn’t easy but you are not alone!

So I am about to be very raw and open with you all. I have a very hard time accepting help when offered to the point that it is and has been detrimental to my physical and mental health. I am working really hard to overcome this and let people in. But it’s a struggle! During my husband’s recovery, I have had moments where I was angry at him and resentful. This is normal and you are not a bad person for feeling this way.

Let me say that I could not have done this without the support system that I have. My family is full of super-loving people who are beyond supportive. I have a huge group of friends who care and love my husband and I and would be here to help me at the drop of a hat. Lastly, I probably have the best most supportive bosses out there! They have gifted me time, time to be with my husband, time to deal with the trauma, time to be mad, time to heal. They are extraordinary!

And through this entire ordeal, every single one of them has asked to help and I said I didn’t need them.  What an idiot!

If you have people who ask what they can do to help. Ask them to bring you a meal to the hospital, help you move furniture, prepare and organize medications, sit and talk about your fears, just being together can make a world of difference.

Being angry is normal!

I spent many hours crying, praying, feeling sorry for myself and my husband, resenting that this was happening, thinking about the future, resenting people who I thought were friends, thanking God for the life partner he gave me, and overall being in a daze.

The one thing one of my girlfriends said to me that really struck a cord is that she “Saw me.” She meant that she knew that after my husband was out of the hospital and the well-wishes had all gone she could still see me living through this trauma and major life event. This made me cry. I felt validated and seen.

My husband and I try not to make his health an issue around others because it’s not a “fun” topic to talk about but it does mean a lot when people are genuine and want to know how things are. Now for the shitty part of this whole situation. You will find out very clearly who in your life cares and values your relationship. It has been almost the most heartbreaking issue we have faced through this whole ordeal. My husband realized that people he considered family didn’t bother to see how he was doing, call me to check in, and still haven’t to this day.

To tell or not to tell that is the question!

One thing that we decided very shortly after finding out he needed surgery was that only a small group of people would know that his surgery was happening. I left that decision 100% up to him. He decided who and when we would tell people.

You might say that this was a form of self-preservation. We both were not mentally good and there was no way we could talk others off a ledge we were also standing on.

At the end of the day, it is up to the person having the surgery and them alone. Even if it’s hard try to respect their decision.

ADVOCATE, ADVOCATE, ADVOCATE!!!!!!!

The hospital where my husband’s surgery was performed is located about 45 min away. We had never gone to this hospital and were both unfamiliar with its layout and location.

On the day of the surgery, we were taken to the pre-op room where he was shaved, cleaned, and prepared to be taken to surgery. In this hospital you walk your loved one to the door, kiss them goodbye, and walk out into a heart patient-only waiting area. I checked in with the desk to let them know who I was waiting for and took a seat. There were 6 of us waiting for open-heart patients that day. His surgery went very well and the doctor came out to apprise me of his condition and how everything went at 5:00 pm. That’s when everything went to hell in a handbasket.

I sat in that waiting area until 9 pm with no updates, no communication, nothing! It was so bad that the last wife waiting to go to her husband came and asked me if everything was okay because I had been sitting in the same spot for 12 hours. Nurses would walk by and look at me but not say a word. And I should have spoken up but because of my patient personality, I sat and waited.

When I saw the janitorial staff arrive to clean I decided that something was wrong and had to figure something out. I had the packet of information given to me in the morning and found the number for the ICU. After getting the runaround and being forgotten for another hour I took it upon myself to find the ICU. Remember we’ve never been to this hospital.

Another 30 minutes were spent asking security where the ICU was, asking a newly released convict if he knew, and finally finding a kind Russian-speaking janitor who helped me find the ICU door.

Once I made it in to see my husband he was trying to joke with the nurse who was brand new and didn’t know he was supposed to come get me hours before! His nurse trainer was sitting outside my husband’s door on her phone. This poor young nurse on his first day and my poor sweet husband were struggling together.

The next day I spoke to the head nurse for the hospital to let them know what happened and did receive notice that there are multiple disciplinarian actions taking place because of our situation.

You are the ONLY one who can advocate for yourself and the patient.  Don’t do what I did and trust that they know you’re there and they are doing everything on the up and up. I need to mention that I am also a care provider for the last 24 years and I should have been more aware and on top of things than this. I simply know better! Needless to say, I am angry and embarrassed with myself.

You are doing enough and I see you!

So as of today, it has been almost exactly 6 months post-op for my husband. He has attended and graduated cardiac rehabilitation, is still in pain at the surgery site and his sternum, and we are both just seeing the fog lift from our lives. My sweet guy had another small heart attack 3 weeks ago. They took him for another angiogram and everything looked good. But I swear I was going to scream “What the Fu**” right there and then.

Life was really, really hard up until now. The recovery is not the same for everyone and If the patient is young it is even more difficult because they still have very active nerve endings and so they generally experience more pain.

I can’t promise anything other than you will get through it somehow. You may struggle, be angry, sad, mad, confused, anxious, and left wondering why. These feelings will pass or just get easier to navigate. Eventually, you will look at one another in awe that you both made it through this extraordinary miracle of modern medicine.

I am sending my love, respect, and hope to you and plead that you reach out to me here on my blog if you have questions or need someone to chat with.