Post-heart attack, when my shocked and stunned Victoria Hospice co-workers came to visit me in the Coronary Intensive Care Unit of the hospital where we all worked, I promised them that, although I probably couldn’t come to work the next day, I would certainly be back at my desk by the day after that. Little did I know at that crazily optimistic and possibly drug-addled moment that there was absolutely zero chance of me actually being able to keep that promise.
In fact, recovery from a cardiac event can take a surprisingly long time, both physically and emotionally – much more than I could have ever predicted. . .
The period of adjustment can last for a year – or even longer. The University of Ottawa Heart Institute advises that how well you manage living with your new diagnosis of heart disease can be affected by:
- how you’ve coped with other serious health problems in the past
- your personal experiences of other people with heart disease
- other life circumstances like financial or family problems, plus the extent of your support at home
- the course of the illness – whether recovery goes smoothly or if there are cardiac complications
Just knowing more about what to expect along the way, however, can often help you deal with the challenges that lie ahead.
But first of all, welcome to what we call the new normal. Your life as it has been up until now is over – your new life (for better or for worse) begins right away. You have just survived what many do not: a traumatic physical crisis that can also strike a huge emotional, psychological and spiritual blow to your daily life, to your family and to your own sense of mortality. See also: The New Country Called Heart Disease
STILL IN HOSPITAL
This new normal starts even while you’re still in the hospital before being discharged home.
Your health care team in hospital will encourage you to regain independence by washing, feeding and dressing yourself, sitting up in a chair, taking walks down the hall. These activities will be spread out through each day and increased slowly until you’re ready to go home. I was told in the CCU that I wouldn’t be going home until I could walk up and down stairs unaided, and pee (not necessarily in that order).
When your health care team decides you are safely ready to be discharged, do not leave hospital without receiving a written discharge care plan. In the relentless rush to free up hospital beds for incoming patients, many people are sent home with many unanswered questions. In fact, the majority of us are discharged with no written care plan outlining instructions for home care or future follow-up details. A recent study reported by Reuters repeated this concern, suggesting that many factors post-discharge can cause a patient to need re-hospitalization. These include the person’s ability to keep up with their medications at home, or to make follow-up visits to a personal physician – both issues that can and should be addressed with a competent discharge plan.
Before you leave the hospital, you may be referred to a cardiac rehabilitation program, which usually includes two-hour sessions of supervised physical exercise, education and support 2-3 times per week for a few months to help you adjust to living a healthier life while reducing your risk of having more heart problems in the future.
If your doctor has NOT referred you to a local cardiac rehab program by the time you get home, insist on this referral. Or, as Mayo Clinic cardiologist Dr. Sharonne Hayes likes to say:
“If your doctor recommends cardiac rehabilitation, go.
“If you’re not referred, ask.
“And if you ask, and are told you don’t need it, find a new cardiologist!”
Many studies show that heart patients who attend and complete a supervised cardiac rehab program have far better outcomes than those who don’t (20-40% reduced mortality rates). See also: Why Your Heart Needs Work – Not Rest! – After a Heart Attack and Failure to Refer: Why Are Doctors Ignoring Cardiac Rehab?
If your community offers a cardiac information/support group for new patients, sign up immediately! Mine was called Heart To Heart, and it happened to start up two weeks after I was discharged from hospital. It was my first planned outing post-op: a structured seven-week program with weekly guest speakers (a cardiologist, a social worker, a pharmacist, a registered dietitian, etc.) helping to educate our group of survivors on a wide range of cardiac topics.
Even if you don’t have community resources like these, start educating yourself at the library, the bookstore, or online.
Knowledge is power.
Do not behave as if you are merely a helpless, uninformed victim. Survivors can visit and actively participate in online cardiac support communities like Inspire’s WomenHeart forum, and find credible medical information from sites like The Heart and Stroke Foundation or the Mayo Clinic.
There are also 900+ HEART SISTERS articles here about women and heart disease that you may find helpful. Just type your specific concern next to the red upper right corner SEARCH box. You can also receive free email notifications every time a new article is published here – just click on the Follow Heart Sisters links on the upper right side of this screen. DISCLAIMER: Remember that information on this site is not a substitute for your own physician’s professional advice.
Buy my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press)
WHEN YOU GET HOME
When you get home, don’t be surprised if you feel much more tired than usual in the early days. Your body is still healing, so be sure to listen to it, rest when you need to, and don’t hesitate to ask for help. Accept the fact that you can’t do everything yourself right off the bat. See also: Women Heart Attack Survivors Know Their Place
And whether you’re employed or not, you will need to take time off work, so ask family members, friends and neighbours to help you shop, cook or clean. Start making a job list of tasks that need doing, so when people say – and they probably will! – “Let me know if there’s anything I can do to help!” – you’ll have something concrete from your job jar to suggest. Or forward this link to them: “You Look Great! – And Other Things You Should Never Say To Heart Patients”
Many survivors are very surprised by how much chest pain/discomfort they still feel long after coming back home. Part of this may be the body’s efforts at turning damaged heart muscle into scar tissue, as well as normal ‘stretching pain’ after stents are implanted, or weeks of post-op healing after open heart surgery.
If you experience chest pain called angina, keep your nitroglycerin with you at all times, and don’t hesitate to use it – that’s what it’s there for. You can often avoid the ‘nitro headache’ side effect by taking a Tylenol about 15-20 minutes before you take your nitro spray or pill. Check with your doctor first to confirm that this preventive pain relief is appropriate for you. If chest pain persists, however, and you have to administer two more doses because of nitro within 10 minutes, immediately call 911 for help.
You may also be surprised by intense feelings of sadness or depression after you return home, which Mayo Clinic cardiologists suspect may hit up to 65% of heart attack survivors (this compares with an estimated 10-20% depression rate in patients diagnosed with terminal cancer). We know that fewer than 10% of heart attack survivors with depression are appropriately identified. We also know that post-cardiac situational depression is common, treatable and almost always temporary. Be one of that 10% group!
You know when something does not feel right – please don’t be a hero. Seek help if your depression symptoms continue for longer than one month. Effective treatments include anti-depressant medication as well as professional counselling and many other effective non-drug options. Tell your doctor about feelings of depression – which can even be linked to certain drugs you are now taking, such as beta blockers.
You’ll likely have a follow-up appointment with your cardiologist a month or so following your hospital discharge. Make a written list of questions you may have – big or small – to bring along to this appointment. You can also bring somebody with you for company and moral support.
RESUMING REGULAR ACTIVITIES
Over time, you will be able to do many of the regular activities that you used to do. Ask your doctor about how soon you can safely resume your normal daily life routines such as sexual activity, exercise, driving, returning to work, or air travel.
But in the early stages of your recovery, take care when:
- bathing or showering in very hot or very cold water
- lifting any heavy weights
- repetitive pushing or pulling arm movements like raking, digging, vacuuming, grass cutting, snow shoveling
- doing any activity with your arms raised over your head (even washing my hair in the shower was amazingly tiring!) See also: Why Just Taking A Shower is So Exhausting for Heart Patients
Many heart attack survivors find, to their surprise, that after a cardiac event, life priorities may shift:
- work may become less important
- health and personal relationships may become more important
RETURNING TO WORK
If you are planning to return to work, think about what new work habits you would like to put into place. When you do go back, make some changes, like:
not taking work home
limiting work hours
- protecting yourself against added stress
taking breaks that include physical exercise
delegating more work
saying “No!” to extra work, or to work that someone else can do
Again, don’t be a hero. Most importantly, any change to your work routine needs to be made when you FIRST return to work. Otherwise, you will simply return to the unhealthy work habits you had before.
The University of Ottawa Heart Institute has very helpful info about living with heart disease, including going back to work and other practical coping strategies after a heart attack.
See other essays here about living with heart disease, including these featuring the four stages of heart disease based on the work of cardiac psychologist Dr. Wayne Sotile:
- Stage 1: Surviving The Crisis – Illness strikes, and patient and family begin the journey.
- Stage 2: Creating a Coping Strategy – Everyone starts to grasp what heart illness is, what’s involved in treatment and recovery, and that the patient and family must work as a team.
- Stage 3: Handling the Homecoming Blues – You’re suddenly on your own; reality sets in and the team must adapt to its new normal.
- Stage 4: Learning to Live With Heart Disease – Patient and family have accepted the diagnosis and committed themselves to living with the illness, not in spite of it.
NOTE FROM CAROLYN: I wrote much more about what happens AFTER a cardiac diagnosis in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University)