Imagine a Cardiothoracic surgeon having to take a scalpel and cut a 25mm diameter hole in your heart and sew a material washer into it while it’s still beating. Then connect a small magnetic levitation pump with a computer chip to the washer, punch a hole through your abdomen to feed an optical fibre line which connects to a control unit and two lithium-ion batteries. All this, and much more, to keep you alive because your heart has reached the point where it cannot function sufficiently to keep you alive.

This is the reality of a growing number of people who are suffering from a variety of cardiac conditions including dilated cardiomyopathy. It might sound brutal, but considering the random nature of a suitably matched heart becoming available in time, there is no alternative.

This incredible technology had its first successful human implant in 1982 in the United States where a male patient survived for 112 days. The first Australian implant didn’t take place until 2010 at Sydney’s St Vincent’s Hospital.

The device used to be called a Ventricular Assist Device (VAD) but was recently relabelled as a Mechanical Circulatory System (MCS) due to legislation introduced into State law in the last few years that refers to Voluntary Assisted Dying which had an identical acronym.

Patients requiring this surgery might have either one or two of these devices implanted depending on the circumstances of their heart failure.

Illustration of a heart with two Ventricular Assist Devices attached – called a Bi-VAD. Typically a device is attached to assist the left side heart function (LVAD) but in some case, both sides of the heart need a device for support.

Australia has four main heart transplant centres, with the Alfred Hospital in Melbourne and St Vincent’s Hospital in Sydney performing most of the  MCS implantations and heart transplants and supported by the Fiona Stanley Hospital in Perth and Prince Charles Hospital in Brisbane.

Medical emergencies and health events can create significant hardship. They do not discriminate on the basis of age, gender, race, education, geography or bank balance.

The consequences can have profound effects on the individual experiencing the event as well as a cascading number of people around them, including family members, friends, work colleagues, businesses and recreational groups they are part of.

The individual experiencing the emergency or event will be impacted medically, physically, emotionally, psychologically and undoubtedly financially.

Those around them will have their own emotional, psychological and financial impacts.

One of our clients contracted a virus that attacked his heart muscle in 2010 which caused dilated cardiomyopathy and eventually led to him also experiencing kidney failure in 2016-2017. The impact of a failing heart and kidneys which were shutting down meant he was experiencing significant ongoing fluid retention which had to be dealt with by hospitalisation and IV diuretics.

His condition became dire in August 2017 and he was transferred to the Royal Adelaide Hospital (RAH) from a private hospital so that he could be prepared for medivac flight to the Alfred Hospital in Melbourne to undergo testing and evaluation to be listed for heart transplantation.

Our client and his wife were under the belief that they would be in Melbourne for a week of tests and discussion and then return home, with him being admitted back into the RAH for ongoing medical support.

With an adult child, a teenager and a dog at home there were a few things to plan around before leaving for Melbourne. Their other adult child, living independently, agreed to drop in and lend a hand. Just a week, it was under control.

The day after arriving at the Alfred, our client went into multiple organ failure and had to be placed into an induced coma and put on ECMO (life support machine). This was the beginning of the significant toll that would envelope the family over the next three years.

Our client underwent an MCS implantation during his 38 day stay in ICU which required his wife to authorise the surgery without his consent (he was in an induced coma). His wife was faced with the monumental task of authorising medical surgery and treatment, activating his income support protection in his Super policy, contacting his employer, contacting family and friends, contacting her own employer, navigating the SA Government Patient Assistance Transport Scheme (PATS) and Federal Government Centrelink Carer’s payment for some financial support, all the while having no understanding if the surgery and recovery was going to be successful and how long that might take.

Additionally, she had to arrange for their kids at home (one still at high school) to be self sufficient for the time being while she dealt with everything in Melbourne.

Their three children flew over as soon as they heard things had taken a serious turn for the worst. The in-laws followed soon after.

It’s surprising how quickly patients lose body mass and muscle during a hospital admission and our client’s initial inpatient stay at the Alfred lasted 91 days so he lost in the order of 28kg – some of that was fluid overload due to his kidneys not functioning because of the heart failure. He was discharged in a wheelchair, unable to walk, a machine inside him pumping blood around his body 24/7, significant muscle wasting and neuropathy in his legs and feet from being on ECMO for over 20 days. His feet, particularly his left foot was completely numb.

For the next 13 weeks he had to present to the Alfred for education, testing, treatment, physical rehabilitation and blood management (he had to use Warfarin to thin his blood to ensure the pump didn’t spin off a clot and risk a stroke).

This is where the financial impact of this experience started to become apparent.

Due to his lack of strength, balance and inability to walk yet, he and his wife had to stay close to the Alfred in order to keep the transportation costs to a minimum. As they didn’t have a car in Melbourne, taxis and Uber were the only options.

Apartments and hotel rooms in South Yarra are not cheap, particularly those with cooking and washing facilities as well as a lift. The government support from PATS was helpful without being overly generous. The cost of accommodation was significant over the 13 weeks of his outpatient rehabilitation.

Our client was the first patient with one of these devices to present to the new RAH after its relocation to the western end of North Terrace. A team of specialists from the Alfred Hospital flew to Adelaide to inform and educate the Cardiologist and heart failure clinicians who were to care for him on his return. The Cardiologist had done his Fellowship at the Alfred in the heart transplant space and was to become our client’s lifeline until he became transplanted.

To be more accurate, he has become our client’s lifelong specialist since his transplant and manages all of the implications of post transplant life – diet, immune suppressing medications, regular skin checks (some of the medications increase the risk of melanoma significantly), kidney function (yes they eventually woke up and are now relatively normal) and bone density (again the medications have an ongoing impact).

It took 19 months from the implantation of the mechanical heart pump to the time our client received a phone call from the Alfred that they had a suitable donor heart for him.

Thankfully our client had one of the older Super policies that gave him a period of five years protection at 70% of his income. His wife had to walk away from her long term employment as she had to become his full-time carer immediately after his mechanical heart pump surgery. This commitment lasted until after his heart transplant when his physical condition had improved significantly and became completely independent again.

The totality of this experience has been profound. And continues to be.

The message from this article is to be more aware of the vulnerability of the human body. Our client has connected with people ranging from 6 years old to 71 years old who have needed the support of a mechanical heart pump or heart transplant to sustain their life. He has met both females and males from all walks of life.

As part of his multi-year journey back to full time work, our client worked part time in the health system as a Consumer Advocate and regularly talks to patients needing stents, bypass surgery and other significant medical interventions. In the majority of cases people weren’t particularly focused on being ready for such an event to occur to them… until it did. And in every case, it has had a significant impact on their finances as well as broader aspects of their life and family.

To be out of the workforce for such a long period of time has had a significant impact on our client’s financial position. Even with income protection, he estimates that the combined impact on he and his wife’s finances is north of $200K.

There are many ways to be more ready for something like this to happen to you, it just needs you to accept that emergencies and the unexpected are life events that can happen at any time and require early planning and preparation

Some important things to keep in mind:

• Have access to savings in case of emergency – this cannot be stressed enough
• Investigate your Superannuation policy to see if you have built in some income protection and/or life insurance
• Investigate whether a life insurance policy is something that might work for you
• Be very clear where you stand with regards to sick leave, annual leave and other entitlements from your employer(s)
• Be very clear what your contractual obligations are with your employer(s) in case you are experiencing an emergency and are unable to give a definite timeframe for your return to work
• Have the important documentation about your life in one, accessible place (eg your will, power of attorney, enduring medical power of attorney, birth certificate, etc)
• Spend the time and money to create a professional will
• If you are married or in long term defacto relationships, ensure that services and utilities are in joint names so that your spouse or partner can access information and make decisions on your behalf
• If you are married or in long term defacto relationships, if possible, ensure assets (car, house, etc) are in joint names so that you spouse or partner can access information and make decisions on your behalf
• If you are married or in long term defacto relationships, consider who has access to your bank account(s) in case you are rendered unconscious for a period of time (eg induced coma)
• Consider having a written plan for emergencies which details what you wish to happen on a day-to-day basis (eg pets, watering the garden, mowing the lawn, paying bills, informing family and friends, informing your employer(s), who has access to keys for the car and house, etc). If you have a written plan, ensure it is communicated to a trusted person so that they can find it and passed onto other suitable people
• Consider writing down a list of all of the key contacts there are in your life (eg doctors, specialists, family, friends who might need to informed, employer(s), local council, utilities, etc) so that your spouse or partner has ready access
• Consider having your medical history (including medications, operations and allergies) written down so that if you are in an emergency, particularly if you are rendered unconscious, it can be passed onto the medical team treating you – this might save time, and your life, in an emergency.

The other perspective to consider is that of being a business owner and employer

Do you have the necessary structures in place in order for you to be absent, possibly at very short notice, from your business for an indefinite period of time?

Do you have a senior staff member who could step into your role to keep things afloat?

Do they have access to all the necessary decision-making tools to ensure your staff and creditors get paid?

These are very important responsibilities that can cause significant harm to your day-to-day operation and consequent reputational damage to you and your business.

Your staff depend on your attention to detail as an employer and put their trust in you that you have contingencies in place as part of your risk management plan.

Are you living up to those expectations or do you need to spend some time getting your plan in order while you can?

Speak to Indigo Financial today if you need assistance getting your business plan into shape in order to risk manage a significant event, health or otherwise, impacting your business. We know first hand how your life can change in an instant, so let us use that knowledge to help you plan for the future.

Call us on (08) 8212 8585