Hi, My name is Elle; I was born in 1983 and have had 5 open-heart surgeries.
I’m sure that got your attention! - It usually works a treat at parties. It’s also a big crowd pleaser at the local country pub where I’ve been a proud member of the ‘zipper club’ since I was 3 days old.
While I like to think I take hard knocks in my stride, I will admit that my resilience was well and truly tested when I found out I needed a 5th surgery.
A few days later I did what most people do … I googled it. I struggled to find first person accounts of how to prepare for the surgery, what to expect during it, and the best ways to recover.
I thought I’d put my decades of experience to good use and share some tips. I hope you find them useful.
p.s. sorry this is so long, turns out there is a lot to cover! The next blog won’t be as long – I promise.
Preparing for Surgery
If you’re reading this and have some time before your surgery, I found the following things really useful.
It’s all about planning. There is so much you can do to give yourself the best possible outcome.
Penny for your thoughts …
People are often caught out by how mentally and emotionally challenging open heart surgery can be on them and their loved ones. My number 1 recommendation is to plan how you can manage this – in my case I saw a psychologist. But, I know others who use mediation, hypnosis and self-help books.
I am the first to admit that I didn’t have all the strategies to handle the serious challenge of major surgery. My psychologist helped me deal with talking to family, friends and colleagues about surgery. She also helped me work through the various aspects of the surgery itself that scared me. By the time of the surgery I arrived at the hospital feeling calm and prepared. Your family may also want to access psychological services. It will likely be very hard on them to see you incubated in the intensive care unit, not to mention time off work themselves and other issues.
You can access free psychological services through Medicare, your medical team (including GP) can point you in the right direction. Some employers and education institutions also offer access to free psychological services.
Make absolutely sure you’re seeing the right cardiologist and surgeon! I have complex adult congenital heart disease and must only be seen by specialist cardiologists and surgeons. It might be a bit awkward to have the conversation, but it’s your right to ask your doctors if they have the specialist training to treat you. If not, ask to be referred. We have many major decisions in our life, and this one is life and death.
Who can you can delegate your responsibilities to while you’re in hospital and recovering (e.g. childcare, work, study, caring, pets, groceries, cleaning)? My husband and mum were my key people and I allocated other people minor tasks to also help out. I hated doing this because I felt so dependent, but lifting the load for a few weeks meant that I could recover quicker and get back to ‘normal’ life sooner.
Study and employment
How can you manage your leave, income, and return to work/study? I’ve always found this tricky. My key lesson is to always put my physical and mental health first. I have found out (the hard way) that taking months to recover would not end my career or study. It will still be there when I’m ready to take on the world again.
Research and planning helped to ease my concerns about work and study. I ask my doctor how much leave I need and if I’m entitled to any government funding assistance and then planned accordingly. I also found out and managed my rights and entitlements, budgeted, negotiated my leave and phased return ahead of surgery, stepped down from demanding roles until I’d recovered, and took a few days leave before the surgery to wind down and switch off.
Get your house in order
I find sleeping and getting comfortable in chairs and bed difficult post-surgery. We had fortunately upgraded to an electronic reclining lounge before my last surgery and it was magic. I also borrowed some extra pillows to help get comfy in bed. Pulling the dining table chairs out was far beyond my capacity initially so I improvised with an office chair with wheels (it was wheely handy).
Food for thought
Stock your house with healthy food you love. I didn’t do this and wish I had. Next time I’m planning on preparing meals and freezing them, and doing a grocery shop online and having it delivered when I get home. Other people get very yummy pre-cooked meals delivered to their home. I think setting this up would lift stress off my family and help the transition home.
Nerves of steel
What are you nervous about regarding the surgery or your stay in hospital? It helps to write it all down and make time to discuss it with your doctors and nurses. I’ve had this surgery a few times now so my list is pretty detailed. All of my nurses and doctors spent the time to go through it with me. Even if some things could not be changed (despite my protests); the staff always did their best to help manage things for me when they knew beforehand.
Practice makes perfect
Post-surgery you can’t put pressure on your upper body because your sternum needs to heal. It’s helpful to practice getting in and out of chairs and bed without putting pressure on your hands/arms/elbows – i.e. use your leg and core muscles. Moving like this doesn’t feel natural so practice beforehand helps. I was in no state to exercise before my surgery, but I could do this easily.
Playlists – meditation and music
In hospital I had to contend with the discomfort from surgery, plus noisy people and machines. I prepared meditation and music playlists to take to hospital. My meditation included guided visualization, relaxation, healing and ocean sounds. The meditation would give me time to zone out from hospital life, relax and remember the outside world. It also helped me cope with the things happening to me and around me. A psychologist can also help find a meditation technique that you find most helpful.
Stock up on movies, TV, podcasts, magazines and books that you want to watch/read in your recovery (and in hospital). I saw my recovery as a great time to catch up on loads of movies I'd missed. It was like a little holiday. I found reading difficult for the first few weeks so the TV was very handy.
Coloured and bejeweled
Remove your nail polish and stash your jewels away – you won’t need either for the hospital. My doctors always ask me to remove my nail polish so they can see the colour of my fingers and toes (blue is very fashionable for my nails). Also, I don’t take jewelry to hospital as I’m too scared I will lose it.
Oh how do I say this nicely …as an adult I wasn’t told that you get a urinary catheter during open heart surgery until I woke up, realised I needed to pee, and surprise someone has already been downstairs put a tube in there. To make it easy for people to do their job, do a bit of maintenance before you go into hospital and help them out a bit.
Get a large wheat/heat bag for your shoulders. My back/shoulders ached in various places for a few weeks after surgery and my heat pack made me feel much more comfortable. Hot water bottles are also good too and can be cheaper.
For the ladies, get some post-surgery bras. I’d never heard of post-surgery bras until recently so I used cheap sports bras 1-2 sizes larger than I usually needed with really thick chest bands. My sternum was enlarged for a bit and I didn't want to wear bras, so these were a comfortable alternative. I couldn’t get them on and off myself for weeks, and at the start I could only wear it for a few hours.
Making a decision about the following took some of the burden and confusion out of my time in hospital.
To visit or not to visit
Would you like family and friends to visit you in hospital? If so, who and how often? It’s up to you, but it’s helpful to make your preferences clear beforehand. On the one hand a friendly face is always wonderful, but on the other I was very exhausted from the surgery and struggled to interact much. Personally, for my last surgery I decided not to have hospital visitors other than immediate family. I just focused on recovery in hospital, and my friends came to visit me at home instead.
Even though I didn’t see people (other than immediate family) in person at the hospital, I still wanted them to know what was going on. I got everyone’s email addresses together and started email updates. My mum and husband sent updates for the first 5 or so days until I could do it myself. This worked really well. I’ve also heard of people leaving a message on their answering machine which people could call and listen to, or setting up private social media accounts.
I know this sounds weird, but ever since my first surgery when I was a baby my parents took photos of me post op and throughout my recovery. I still have the Polaroid’s from when I was a baby and I love having all of them. Mum took photos during my last surgery again and I looked at them at my 1 year anniversary to celebrate how far I’d come. The photos provide an excellent record of what you have been through, how far you have come, and how strong you are. I highly recommend them.
If you have more than one car, have a think about which car you want to come home from hospital in. I live in Canberra and my surgery was in Sydney. I was fairly nervous about the trip home. We chose the car that was easier to get in and out of and had electronic reclining seats. My husband also packed me in like a sardine with loads of pillows, it was pretty funny, one pillow under the seat belt and another between the door and me.
Packing for the hospital
- Your list of things to talk to the medical staff about.
- Wheat bag or hot water bottle.
- PJs and loose fitting clothes that are easy to get on and off - Buttons down the front are helpful.
- Socks and slippers.
- Walking shoes to do laps of the hospital floor/ward in - something steady and slip-on is good.
- Toiletries. Pop some nice things in that make you feel relaxed and special. Non-irritants are good too.
- Dry shampoo. I couldn’t wash my hair for days.
- Eye mask and ear plugs.
- Lip ointment (not gloss). My lips get chapped post-surgery.
- Glasses, hearing aids, and dentures.
- Medications and vitamins.
- Medicare and health insurance cards.
- Entertainment and meditation. Get ready for your vaycay!
- Pillows for hospital and the car ride home.
- Change for the vending machines and lollie trollies.
- Snack food for when you want a treat.
- Feminine hygiene products (tampons and pads just in case).
- Prezzies for the medical staff. A bit of bribery goes a long way in hospital.
- Game face – you’ve got this!
Surgery - while in hospital
Being incubated and waking up with a tube down my throat was difficult and disorientating. I previously found not being able to communicate hard. This time round I wrote myself half a dozen A4 signs for family to hold up so I could respond with just a nod or shake of my head. I had things like, ‘drink of water?’ ‘hold my hand?’ ‘come back later?’. This part isn’t only hard for you, but can also be very confronting for your loved ones – but the emotional planning ahead of time can assist.
Try and keep things in perspective – look for positives. Chunk the time down and know that every 24 hours you get through is a win and an improvement so pat yourself on the back. I remember laying there the first night after surgery feeling miserable and telling myself ‘calm down, it could be worse’, and then it dawned on me ‘actually this is the worst it gets, and I am coping ok’. Knowing I was coping during the worst of it was a big positive and made me feel much better.
Don't suffer in silence
If you’re in pain tell the medical staff. No one will think less of you for doing so. There are no medals for suffering in silence. Over the 33 years I’ve had surgeries there has certainly been a significant improvement in pain management. But, I was still stiff, sore, and uncomfortable. Again, chunking the time down into small blocks helped me have goals and I knew every few hours meant I was over a bit more of the worst of it.
My family and close friends were my lifeline. I didn't always talk to family when they visited in first few days. But, boy was I glad they were there. Having an agreed time for a visit kept me going because the nights could be long. I could see the clock and was counting down till I got to see my family every morning.
Use your playlists and entertainment to pass the time and distract you from hospital life anytime you need. I kept my phone and headphones very close and used the meditation and music if I woke up at 3am or any other time I needed it. I also watched movies on my iphone with my husband when I was too tired to talk but liked the company.
Spin around the block
It wasn’t until 2016 that I had my first ever exercise physio before and after surgery, which was organised by the hospital. I really think this was a major factor in my recovery (she got extra prezzies). I looked forward to seeing the physio every day to get out of bed and go for a spin around the ward with my drip (known as ‘side show bob’). I was pretty stuffed after our spin, but could see progress every day which was great for boosting confidence in my recovery.
Having the first walk, bowel movement, or breakfast is a win. Celebrate it. Fist bumps are bit easier than high fives because of the broken sternum. For me, each ‘first’ is a milestone in recovering and one step closer to being better than before surgery.
What you’ll want to know before you leave hospital
- How do I get in and out of a flat bed?
- How much weight can I lift?
- How do I manage my scar?
- Who can I call if I have questions when I get home?
- When should I see a GP or specialist next?
- Do I have all my medication to take home?
- Do I need any referrals to allied health professionals?
- Can I claim any expenses (e.g. travel and accommodation)?
- What is my nutrition and exercise plan?
- When can I have sex?
- How long until I can drive a car?
When you get home
Don't suffer in silence
As with being in hospital, tell someone if you’re in pain (like a GP). I thought once I was out of hospital I was out of the woods. No sir-ee. I used medication for a few weeks at home. We had a notepad to write down every time I took medication to make sure I didn’t skip one or double up accidently. I also used the large wheat bag all the time as different parts of my chest, shoulders and back would ache.
No can do
There was loads of stuff I couldn’t do when I got home, like get out of bed easily, lift my arms over my head, shower, dress, open the fridge door, prepare hot drinks and food, carry bags, and do chores around the house. Planning ahead and having helpers made this all manageable. Rest assured I could do all of this stuff again within a few weeks, but I tried not to force them until I was able.
Rehab – yes, yes, yes
My most recent surgery was the first time I went to hospital out-patient rehabilitation and it was fantastic! It was arranged by the hospital. Following my grease and oil change, I had to learn what the new limits were and how to get the best out of my body. Rehab included cardio and lite weights, stretching, information sessions, and heart monitoring. The staff were lovely and the other patients were very supportive. I can’t recommend rehab enough! If you’re young, you can speak to your medical team about a referral for private rehab so you’re not lumped in with the oldies (no offence).
Walkin’ on sunshine
I’ve been given walking plans a few times when I’ve left hospital and they have been very helpful. I had my last surgery in the dead of Canberra winter so did most of my walking on the treadmill, but otherwise short walks outside are great. It gave me a little sense of achievement and something to do.
I tried to schedule visitors on what I thought would be ‘good energy days’, but I didn’t always get it right. I had to cancel on some people and tried to keep visits to 30-60 minutes in the first few weeks. Even if I was feeling good, I found that longer visits would take a while to recover from. I was so thankful to everyone who took time out of their busy life to visit me and talk about everything and anything.
This may not be for everyone, but my husband picked up a cheap wheelchair that I used for the first few weeks post-op to do short outings in. Instead of overdoing it walking around, I’d just sit in the chair and be pushed around. It was great for going to the movies and a spin through IKEA. I still did my normal walking and rehab as well.
A lot of women have issues with their period following open heart surgery. I don’t quite understand how the two are related, but I’ve had issues on several occasions. Keep in touch with your GP and medical team if there is anything abnormal. Also, the sternotomy (open chest) does weird things to boobs, they can fall under your armpits and go slightly odd shapes. Don’t freak out, they always seem to eventually go back to normal for me.
Don’t over do it
I’m the queen of over doing it – just ask my family. I hate waiting for my body’s energy levels to catch up to my enthusiasm levels. As the weeks drew out after my surgery I kept trying to do more than I should. I even asked my GP what was wrong …but she figured out quickly that I was having coffee dates instead of resting (eye roll emoji). I went through full seasons of TV shows and annoyed every friend I had to visit me. I don’t know what the answer is to this – if you figure it out please let me know.
Good vibes only
It takes a village to help recover from open heart surgery and stay positive. I went back to the psychologist after the surgery to discuss things like returning to work, coping with over-doing it (eye roll), and staying positive. I celebrated my progress, like being able to put my own clothes on, make a cuppa, or drive my car. I also drew on my medical team, family and friends who were incredibly supportive and patient. Lean on your village for this short period in your life, because you will be a village member supporting others again soon.
Don't rush back to work or study if you can help it. I scheduled 6 weeks off work, but I ended up taking 8 weeks off. I then had a phased return to work, and slowly increased my part time hours for 6 weeks and went full time after that. If you can afford it, take the time to recover. It will help in the long run.
The world is your oyster
Finally, after weeks of preparation and planning, a stay in hospital, and months of recovery the world is your oyster again. There is nothing like open heart surgery to make you realise how short life is and as Mae West said ‘You only live once; but if you do it right, once is enough’.
*Disclaimer – I don’t have any medical qualifications. This information is general and based on my experiences, therefore it doesn’t take into account your personal circumstances. Before taking action on any information, you should consider if it applies to you, and where appropriate consult with your medical team, family and friends. I’m also not an employee of Heart Kids Australia. They have just kindly agreed to post my blog for me.
About my heart condition: I was born with pulmonary atresia and intact septum with a leaky mitral valve. In English, this means that the connection from my heart to my lungs was “blocked” as one of the four normal heart valves never opened up – and one of the other heart valves was leaky. Also, one of the pumping chambers of the heart was much smaller than normal; the one under the missing valve. My surgeries have been to repair these problems.
Feel free to drop me a line. I’d love to hear:
- other tips or tricks - I can always add to this,
- questions I might be able to help with (noting I’m not a medical professional),
- what your experiences have been, and
- any ideas for other blogs I could do (which will be much shorter).