by Carolyn Thomas ♥ @HeartSisters
The freshly-diagnosed heart patient often staggers from the shock of being hospitalized to the shock of being discharged before we’re feeling even barely ready to return home. As I wrote in the British Medical Journal (BMJ) about my own hospital discharge after surviving a misdiagnosed heart attack:
“I couldn’t wait to go home, to sleep in my own bed, amid familiar surroundings, family and friends. But when I was sent home from the Coronary Care Unit, I was also scared that every twinge I felt surely meant another heart attack. I’d left behind the constant monitoring by professional experts for a home where nobody in my family knew anything about cardiology!”
This post is Part 7 of a 10-part Heart Sisters summer series called “What I Wish I Knew Back Then” – which revisits some of the most common questions asked by freshly-diagnosed heart patients. For example, I didn’t know until long after my own hospital discharge that Dr. Wayne Sotile, author of the terrific book Thriving With Heart Disease, actually calls this post-hospital discharge period the “homecoming blues”. For example:
“You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures. No longer are nurses and doctors checking, monitoring and calming you. Now you have to decide what you can and cannot do, and you may feel under-qualified for the job.
“And women’s homecoming can differ from men’s in a very important way: they typically get far less support. Women are more likely than men to insist that their families not be inconvenienced for the sake of their rehabilitation, resulting in family dynamics that can often be less oriented towards the patient’s needs.”
Yet, despite their importance, “hospital discharge summaries are often poorly constructed, incomplete, delayed, misdirected or unhelpful.”(1)
Cardiologist Dr. Harlan Krumholz at Yale University has compared the commonly experienced after-effects of an average hospital stay to having severe jet lag. In his article published in the New England Journal of Medicine, Dr. Krumholz dubbed this distress post-hospital syndrome.(2)
For example, he observes that most hospital patients:.
- are commonly deprived of sleep
- experience disruption of normal circadian rhythms
- are poorly nourished
- have pain and discomfort
- confront a baffling array of mentally challenging situations
- receive medications that can alter cognition and physical function
- become de-conditioned by bed rest and inactivity
In other words, as he explains,
“We are not really taking into account what happens to people when they are hospitalized. I don’t think hospitals are understanding this as a strategy to improve recovery and reduce expensive and stressful hospital re-admission.”
It also makes sense that the more severe your medical crisis has been, and the longer your hospital stay, the more important the transition from hospital to home becomes. Researchers in Denmark have found, for example, that two thirds of seriously ill patients who experience an intensive care unit (ICU) stay may have “persistent physical, psychological or social problems” after discharge.(3)
Unfortunately, not all hospitals have professional cardiac social workers on staff whose role is to provide emotional support and counseling for both hospitalized heart patients and their worried family members. Social workers can also offer practical assistance with discharge planning or with arranging post-discharge community resources, helping to facilitate the safe transition between hospital and home or another care setting.
My hospital did have a cardiac social worker on staff – but she was just one person to care for heart patients in:
- 4 Pacemaker Clinic beds
- 4 Open Heart Surgery Admission beds
- 7 Cardiovascular Intensive Care Unit beds
- 8 Coronary Care Unit (CCU) beds for non-surgery/unstable/critically ill patients)
- 14 Open Heart Surgery Recovery beds
- 24 Cardiac Short-Stay beds
- 24 Medical Cardiology (arrhythmia) beds
As is depressingly obvious, that lone cardiac social worker was kept impossibly busy single-handedly juggling the 84 other heart patients when I was admitted to the CCU. Inadequate hospital staffing of important support professionals basically meant that I didn’t have a hope in hell of spending any time with that lone cardiac social worker before I was discharged home.
I didn’t actually meet her, in fact, until weeks after my hospital discharge when she turned out to be the guest speaker one evening at the 7-week Heart-To-Heart lecture series that I attended for freshly-discharged heart patients and their family members. After I listened to her presentation on Psychosocial Issues for New Heart Patients, I wished that I could have met her at my bedside in the CCU back when I’d felt so afraid and so overwhelmed.
Since my own post-heart attack hospitalization, my hospital has opened a new Discharge Lounge. This comfortable airy room offers a safe, supportive atmosphere where newly discharged patients and their family members can transition from 24-hour medical supervision to that often-scary car ride home. As our hospital describes it, the Lounge is staffed by a nurse who can arrange patient transportation home if required, send drug prescriptions to the patient’s local pharmacy, answer questions, and provide both patients and their families with reassuring information about recuperating safely before they even leave the hospital.
It’s an important – yet under-valued – transition that every hospitalized heart patient deserves before heading home.
♥
1. H. Newnham et al. “Discharge communication practices and healthcare provider and patient preferences, satisfaction and comprehension: A systematic review.” International Journal for Quality in Health Care, Volume 29, Issue 6, October 2017, Pages 752–768.
2. Harlan M. Krumholz. “Post-Hospital Syndrome — An Acquired, Transient Condition of Generalized Risk”. January 10, 2013. New England Journal of Medicine; 368:100-102.
2. Svenningsen, H. et al (2017), “Post-ICU symptoms, consequences, and follow-up: an integrative review.” Nursing in Critical Care, 22: 212-220. 2017.
Statue image: RPerucho, Pixabay
Q: How would you describe your most memorable hospital discharge experience?
♥
NOTE FROM CAROLYN: I wrote much more about what I didn’t know when I was sent home after my heart attack in Chapter 4 of my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (and use their code HTWN to save 30% off the list price when you order).
See also:
–The hospital discharge race: is sooner always better?
–Study: “91% discharged from hospital without care plan
-Hospital food: the best reason to keep your heart healthy and avoid hospitalization
Heart Sisters 
I love how you advocate for patient education. I work as an in-center Hemodialysis Technician and I try to stress the importance of being your own advocate.
Know what you need to know. After the shock wears off, take your life into your hands. Don’t give others the reigns because it is comfortable. That is the key to every person’s success or failure.
Thank you.
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I had an 80% blocked left anterior descending artery, a 70% obtuse marginal artery, 99% dominant tortuous right coronary artery which resulted in triple bypass surgery. Lucky I had a stress test before a heart attack.
I spent an extra week in the hospital because I hated the food, was on so much meds, and was just plain sick. My hands are always cold, so my oxygen levels were never right and they would not take me off of oxygen. I had great cardiac rehab nurses who had me up and walking as soon as I came out of the ICU. I was doing rounds in the hallways so they started to take me up and down the steps.
I had a wonderful team of nurses who did not put up with any excuses. Social workers helped with hospital discharge. I was discharged around dinner time and they brought all my meds to my husband with a schedule.
Then I was home… 4 weeks later I saw my surgeon and he looked at my incision and said you can go back to normal daily life. Are you kidding? No way was I ready to do a lot of things. I did do cardiac rehab. It was like going to a gym. And I also did some pulmonary rehab which I enjoyed more.
I am glad I did both and that I am still young enough to have been able to recover as well as I have. I was not prepared to take so much medicine. But 18 months later, I am down to 2 pills, one in the morning and one at night.
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Hello Susan – you’ve had quite the experience with your brave little heart! It sounds like you had a terrific team of nurses and social workers – they can make such a difference, especially in those early days.
How long it will take heart patients to go back to “normal life” after coronary bypass surgery seems to be all over the map depending on which cardiac surgeon you ask. I wrote more about this problem here (“How Long Does it Take to Heal from Open Heart Surgery?”)
Take care, good luck to you! ♥
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Good info, I wish there was some place or help in my area,
I had open heart surgery and 2 bypassed in June 2023.
And looking for moral support
Thank you
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Hello Donna – you are still in relatively early days as a new heart patient, an overwhelming time to heal both physically and psychologically. If your cardiologist has referred you to Cardiac Rehabilitation, please sign up for that. If you haven’t been referred, ask for this! You might also be interested in checking out the free online support group called WomenHeart Connect– over 40,000 other women from all over the world who are also living with heart disease. You can ask questions or share your experiences with others who understand what you’re going through.
Good luck to you, take care!♥
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It took 3 weeks of on-and-off symptoms for me to call an ambulance. I had made an appointment with a cardiologist but I knew I couldn’t wait that long to be seen.
It turns out that I had a 95% blockage of the Left Anterior Descending (LAD) artery. I think not knowing that I was walking around with that was the scariest part of the whole experience. I was sent home after 3 days in the ICU. While in the ICU, I had to be reminded more than once that I was in the ICU. Stuck with monitor leads all over me, and not able to move around without help was frustrating and I’m sure others felt the same way.
Before I was discharged, I had an appointment to attend an orientation for cardiac rehabilitation 3 weeks later. They also coordinated the new meds so that I got them from the hospital pharmacy delivered to my ICU room because I wasn’t able to drive to my own pharmacy, and I had no one to get them for me. I think that coordination was the most complicated when I sat there staring at the prescriptions, wondering how they expected me to fill them.
It’s difficult when you have no one and are completely overwhelmed with being reliant on yourself for every detail. Those who have someone that cares and can help are extremely fortunate.
I’m glad to be home and I’ve completed 22 of 36 cardiac rehabilitation sessions which I look forward to because I’m with others in the same boat who can relate. So I feel support for the time being.
I look forward to your posts and savor each one. Thank you!
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Hello Mary and welcome to the exclusive club that nobody ever wants to join!
Waiting weeks deciding if symptoms are serious enough to call 911 turns out to be very common (researchers call this “treatment-seeking delay behaviour” (far more common in female heart patients than in our male counterparts!) Good for you in deciding you could NOT afford to wait for your cardiologist’s appointment. You may have saved your own life with that one decision.
I’m so impressed that your hospital held that cardiac rehab orientation for patients AND arranged to deliver your prescribed meds directly to your bedside. I wish EVERY hospital would do the same during such an overwhelming patient experience. Every thoughtfully planned moment like those two is truly patient-centred care (which all hospital administrators brag about, even if it’s clearly not happening!
I too got so much out of my cardiac rehabilitation classes. The cardiac nurse who ran our program was wonderful and so supportive. We know that heart patients who attend (AND COMPLETE) cardiac rehab have much better longterm outcomes compared to those who don’t – so GREAT DECISION on your part, Mary!
If you’re interested in ongoing support long after rehab ends, you might consider joining the WomenHeart Connect online support group. It’s free to join, open 24/7, covers dozens of specific heart topics, and you can post questions or replies to over 40,000 other women all over the world. When I was a new heart patient, I was the only person in my entire social circle or family with heart disease, so it felt like few if any of them really understood what I was going through – but WomenHeart survivors sure did!
Take care, and enjoy the rest of your cardiac rehabilitation program! ♥
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Hi Carolyn,
I maybe one of the reason why hospitals are in a hurry to discharge people after suffering a massive heart attack. All I wanted from the moment I was placed in a room was to go home. I hated the fact that I could not get up and go to the bathroom or do any of the things I wanted. I’m still a critical care cardiac patient, but I’m in the place where I feel the safest.
I went home 3 and a half days after suffering an Acute MI-STEMI (widowmaker heart attack) with massive irreversible progressive damage. I was in a CICU after being stabilized and having a stent placed. My IDs had been taken home and they were unaware that I had a rare blood type. I was angry because they kept me laying flat on my back for 24 hours because I bled out.
I was allowed to walk on my own my third day, and they said if I could walk around the entire floor after breakfast, lunch and dinner I could go home the fourth day. I wanted out of the hospital where I could sleep when I wanted, and eat what I wanted.
I hate people touching me or asking me questions, so for me home was where I could heal.
Robin
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Hello Robin,
I suspect that most heart patients also want to get home because we need life to be “normal” again as soon as possible, and there’s nothing “normal” about being in the cardiac intensive care unit! The hospital food alone would drive most patients to beg for escape! I could really identify with Dr. Krumholz’s description of “post-hospital syndrome” feeling as dreadful as a bad case of jet lag – for all the reasons listed in the article above.
For me, I REALLY wanted to get back to work after my heart attack. If only I could be back at work, I thought: doing things I was good at doing, working alongside colleagues I loved working with – then somehow I might be able to start feeling “normal” at a time when life did NOT feel normal anymore.
So much of healing at home also depends on who is at home to support us when/if we need help. As I quoted Dr. Wayne Sotile’s comments in this article: “Women are more likely than men to insist that their families not be inconvenienced for the sake of their rehabilitation, resulting in family dynamics that can often be less oriented towards the patient’s needs.” We know that many studies have confirmed the differences between how male heart patients recover at home vs. their female counterparts – even when the females do have family in the house to pitch in.
As in your case, it’s good to know what our preferences are going in, and making sure to communicate those preferences to our family and closest friends.
Take care, keep cool out there. . .♥
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I have to say, my most memorable discharge was from Mayo Clinic, 1,000 miles from my home after a re-do open heart surgery. They did provide a large handbook on recovery and what to expect and a social worker may have even talked to me, I don’t remember.
After all I was an ICU nurse and I’d been through open heart surgery 1 year earlier. So no big deal… Right?
I was discharged 5 days after surgery, I left the hospital with my daughter and we stayed 2 days in a hotel and flew home to Denver on post-op day #7.
I didn’t feel scared when we left the hospital or got on the airplane. It all just felt surreal like I was in someone else’s body flying across the country.
At the time, I lived alone. My daughter had already done the grocery shopping and filled my fridge, and I had everything I needed ready for my return home.
The shock of this whole 7-day, 1,000 mile Heart Journey did not hit me until everyone had left my apartment on the day I returned home and I realized how alone I was should anything happen. No monitors, no nurses and my fabulous heart surgeon and his team a thousand miles away.
I sank into my bed and cried, partly in total relief that I had survived but also tempered with thoughts of how many days it might take for someone to find my body if I died in the middle of the night.
The one person who realized ahead of time how lost I might feel was my local Cardiologist. He had given me his personal cell phone number before I left town and told me to call him as soon as I got home.
I did call him and the fact I could get expert help at the touch of a cell phone gave me some much needed security in the days that followed.
I recovered quite well and I’m still here 9 years later! 😉
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Hello Jill – such an interesting perspective, and a good reminder to all of us that sometimes, the psychological fallout happens AFTER we’re nicely settled back home. Until then, it can be an overwhelming blur of just putting one foot ahead of the other. And your own nursing background can be a double-edged sword: I think others expect that you’ll sail happily right through all this because you’re a nurse!
Your story reminds me of grief: after a death in the family, the bereaved person is surrounded by sympathy cards and flowers and casseroles arriving at the door. But within a few weeks, the flowers are wilted, the cards stop coming, and there are no more casseroles in the fridge. A few weeks after my Dad’s death (at age 62), I ran into a former neighbour of ours who told me that she was going to call my mother to invite her for dinner “when things settle down a bit”. What does that mean? “Settle down a bit”?!? When my mother is her usual happy smiling self and doesn’t act like a grieving widow in her 50s anymore?! Yoiks.
Thank you for your unique description of how both relief and fear can co-exist!
Take care, stay cool. . . . ♥
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