Wow. I thought I knew everything about open-heart surgery and post-operative care but I was sorely wrong. Nothing prepares you for being a spouse or primary caregiver for a loved one after open-heart surgery. I’m talking about the care after receiving a “zipper” – the common term for full sternal or partial sternal surgical entry to the heart. I have worked in open heart recovery in a large medical center, ICU and cardiac and pulmonary rehabilitation, but I was not completely prepared for the home recovery and we were recovering under the best of circumstances.
My husband has had significant mitral regurgitation for four years. We knew a valve repair or replacement would be in in our future and knew we would be in a position to schedule the surgery as the condition worsened, unless of course something urgent happened such as a rupture of his mitral valve chords or similar. With that said, we were able to schedule the surgery and thought we were well-prepared for the post-operative care at home.
The surgery overall went well and the care was outstanding by the cardiac care unit nurses. We received lots of discharge education which, especially if you are tired, get to be a blur after a while. The new concept is patient – centered care so with education, the education is directed with the patient. Looks can be deceiving. A patient may look alert and oriented times three (know his/her name, date, location and name of the president) but it doesn’t necessarily mean they can remember all the education and tips that are shared with occupational therapy, physical therapy, social work, and the Phase I cardiac rehab nurse. I attended all the bedside teaching I could so we could be prepared but even with my healthcare background, my eyes were opened to some new things to consider as a spouse or caregiver.
Tips for After Open-Heart Surgery
There is a lot that goes on during those three to four weeks at home before someone heads off the cardiac rehab. Depending on the condition, the doctor(s) could be stabilizing a heart rhythm, managing fluid retention, or helping a patient manage pain. The overall plan is generally to stabilize the patient and get them ready for cardiac rehab if possible.
Some things to think about:
- Get your supplies in order before discharge. At a minimum, have a precise weight scale, blood pressure cuff, thermometer, shower chair or similar (we used a small, short ladder that had a seat on it), bandaids, over the counter steroid cream for skin irritations from a variety of sources, and anti-bacterial soap. Nice to haves would be a pulse oximeter which is available over the counter now, and a tape measure to measure things like the sternal or chest tube incision sites.
- Your loved one may not be able to sleep in bed for four to six weeks. I should have picked up on that considering we were discharged and my husband was still sleeping at a 90-degree angle in the bed and was not comfortable lowering the bed any lower. I reviewed lots of literature on-line and received anecdotal information from friends who had valve repairs and bypasses. A common theme was, “oh yeah, I couldn’t sleep in the bed for two months. I slept on a couch upright in the basement. ) Apparently this is more common, but then my dad had open heart surgery with multiple complications and slept in a recliner most of his last 10 years of his life. We received an excellent lecture on redeveloping good sleep habits after surgery but somehow, we both missed the “and don’t be surprised if you can’t sleep in bed for a good long while.” Fortunately, my husband’s cardiologist and pulmonologist recognized my husband still had a 1/2 liter of fluid in each lung, and after three heavier days of diuretics, he was able to start sleeping in the bed – after four weeks of a recliner.
- Your life will turn upside down for at least four weeks. If your spouse or loved one is having to sleep in a recliner, that is a life changer in itself. He/she will not be able to lift more than 5 lbs and will have restrictions with bending and turning. You may be managing the household all by yourself and suddenly you realize, the 15 minutes that are given by the other party to load the dishwasher and wipe down counter tops becomes very valuable. He/she may need help even with bathing, dressing and definitely with putting on TED hose. Which leads me to #3.
- Learn how to put on TED hose. I knew how to put on TED hose from my years at the clinical bedside TED hose application has not changed. Wish it had but it hasn’t. Don’t leave the hospital without instruction so you are getting frustrated at home.
- Say Yes to Help. If your friends say they want to bring over dinners, let them. I honestly thought I could do it all but there was nothing so wonderful as to receive a roast, soup, salad fixin’s, a nice dessert treat or even a bit of bread. You will be doing a lot and no matter how much you have stored in the freezer, a homecooked meal beats take-out any day of the week. Just let your friends know you to watch the added salt and, if your loved one is on a blood thinner, share with them tips about managing foods high in Vitamin K.
- Your dining room table will make you feel old. The dumping ground for the multiple meds and healthcare devices tends to be the dining room table. If you are new to managing an illness with lots of meds, you will get a good laugh and a self-awareness moment that aging has arrived.
- Celebrate the small wins. Keep a log. Wins may include daily weight loss (that is anticipated and wanted), taking a bath independently, buckling pants after water weight loss, the return of the appetite, going for a drive, a reduction in perceived shortness of breath or pain, gradual healing of the wound sites, etc.
- Know what normal and abnormal looks like. Be prepared to inspect your loved one daily. My husband had an allergic reaction to iron supplements. He broke out in a terrible rash, and although not particularly itchy, the inflammation spread around his incision site. After a process of elimination, we determined with the doctor it was the iron tablets. Once he stopped taking them, it resolved over four to five days. Track concerns and progress on paper.
- Be prepared for a lot of follow-up doctor visits. It is what it is. At a minimum, your loved one may be going to a coagulation clinic for INR readings and blood thinner adjustments. This is extraordinarily important to prevent the possibility of blood clots forming. Be prepared with questions, reporting progress with details you have gathered at home and push your concerns if necessary.
- Ask for a home health nurse if you are not offered one. We were offered a home health nurse for the first two weeks. This was a God-send as the nurse was able to draw the INR and other labwork during those two weeks of adjustment at home. She listened to his lungs for congestive heart failure, evaluated the incision, and reported to the doctor. She was a great point of contact with the doctor. In some cases, depending on the agency’s connections with the health system, the home health nurse may also have some access to your health record thereby improving the flow of communication.
- Vital signs and assessments will consume you. Create your own log to document everything from Vital signs, incentive spirometry readings, cough production, and weight, to activity level and medication changes, quality of life and activities of daily living changes such as the day your loved one can sleep flat or put on socks. Many electronic health record systems have a patient healthcare tracking tool that the provider can activate and allow the patient to input specific data into the electronic file.
- Be prepared for some isolation. It’s not uncommon for patients to experience depression after open-heart surgery. It’s a BIG deal and I won’t go into detail of what I know about how the chest wall is manipulated during surgery, etc. It’s creepy thinking about it again as I write these thoughts. What is important is to be kind and patient with your loved one. He/she may not feel like talking on the phone because of a raspy throat or a lingering cough. Stay in tune and if you have concerns, report them to the doctor.
- TCOY. Take care of yourself. Sounds easier than it is, but it is important to do something for yourself that is important to your well-being. For some, it is exercising once a day. For others it may be journaling, cooking a small meal for enjoyment, taking a nap, or just being with a friend for a short period of time. Determine what are two to three things that are really important to your well-being and incorporate them into your week. Notice I did not say day because I have learned every day during the first month is an adventure – a medication change here, an x-ray there. Go with the flow and figure out what works for you. Now is not the time to be a martyr. Your loved one needs all of you.
Every patient post open heart surgery responds differently during the home recovery stage. At best, things go smoothly, medication adjustments are minimal, the appetite comes back, activity tolerance returns, and socialization returns as well. Yes, there are norms, but it’s important for caregivers to be as prepared as possible for the recovery process at home.
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