In 2011 Heidi Prowse had an absolute cracker of an idea. To cajole friends and family into stripping down to their Speedos, donning Santa attire, and running laps around a Canberran lake in the middle of freaking Winter. These crazy-but-in-a-good-way people were not focused solely on a chilly exercise session but would find sponsorship for Cystic Fibrosis ACT (CFACT). When Heidi phoned the Powers That Be to notify them of her intention to raise $10,000 in the inaugural Santa Speedo Shuffle they chortled heartily, wished her good luck, and filed the conversation in the part of the brain responsible for curating pipe dreams. But Heidi had her game face on, and raise it she did. Each year the fundraising totals have increased with the 2015 Santa Speedo Shuffle raising $110,000. Hooley Dooley. Respect.
Heidi has a fairly important reason to be a fundraising juggernaut. Her husband Andy lives with Cystic fibrosis (CF). Having grown up together in Tamworth Heidi knew Andy had CF before they started dating. Knowing vaguely what CF is did not sufficiently prepare her for the reality of loving, and living with, a person who has CF. “I knew he had cystic fibrosis. I knew the 65 Roses song by heart and have every album the Wolverines have ever produced. That is the total understanding of CF I had. CF is an invisible disease. I didn’t understand the day-to-day impact it has on Andy, and now has on me. I got a crash course in CF really quickly.”
Heidi wants to make a difference to many more people with CF than just Andy. After being a fundraising volunteer and the President of CFACT, she started working for CFACT in May 2013 and is now the Executive Officer. “Having Andy to come home to and share my wins with is a bonus in addition to the impact of what I’m achieving each day.” Heidi spends time talking with families who have a newly diagnosed child. Part of that conversation aims to give them a realistic idea of the spectrum of CF and what living with CF may actually look like in practice. Naturally, people ask how Andy’s health is. Heidi used to be able to give a truly positive and encouraging response. These days she finds it a harder question to answer without sugar coating the truth or unnecessarily worrying new parents. “Andy is a very special case.”
Andy’s health started unravelling in 2013. A constellation of symptoms were logged and brought to the attention of his care team. Andy had no objectively measurable concerning changes but he had a gut feeling that something wasn’t right. His body rose to the challenge and shortly afterwards gave the doctors their sought after objectively measurable change: coughing up large amounts of blood. Appropriately panicked he called Heidi who did not pass go or collect two hundred dollars but whisked him off to Emergency where the phrase “I have CF, chest pain and am coughing up horror-movie-worthy amounts of blood” gave them immediate access to the inner sanctum. The Canberra Hospital listened to Heidi’s very strong recommendation and placed a call to the RPA CF specialists in Sydney. Andy was flown by air ambulance to Sydney. Heidi was left behind in Canberra with not one clue as to what the outcome of this drama was going to be.
Their lives changed irrevocably. Andy underwent a bronchial artery embolisation to stop the bleeding. He permanently lost twenty percent of his lung function. He wrote an emergency Will. They received news that he had cultured a new bacteria: Mycobacterium abscessus (AKA The Bacteria from Hell but henceforth referred to as Myco). “I wouldn’t wish Myco upon anyone. It’s multi-drug resistant, very difficult to treat and virtually impossible to get rid off. Your best chance to eradicate Myco is in the very first treatment. Treatment is invasive and long term.” As luck would have it Andy experienced almost every possible side effect of the ensuing treatment. Relentless nausea and vomiting meant that he couldn’t eat and he lost eleven kilograms in eight weeks. He sustained neuropathy in his feet and hearing damage. “People told me that they thought Andy was going to die.”
The gruelling treatment triumphed over Myco. Five weeks after his treatment ended Andy participated in The Transplant Games. He beat his goal time in the 100m and took a bronze medal in the long jump. Heidi became an expert at sneaking extra calories into his food and did such a killer job that he gained back all the weight he’d lost and more. He even needed to have his wedding suit altered! The pair married on March 7th, 2015 at Heidi’s father’s property in Tamworth. Heidi wore purple, the guests wore white and they picnicked under the stars. Andy was super healthy. They are grateful that CF and Myco allowed them a few wonderful months together to bask in the Wedding planning, and the day itself.
A month after their wedding Andy cultured Myco again. Myco was now so resistant that there was no cocktail of drugs that would effectively target his Myco as well as the other more usual bacteria that people with CF harbour in their lungs. This news was about as welcome as a shark in your local swimming pool. One of the infectious disease gurus refused to give up and identified a potential approach in August 2015. “We were told they had no other front line options of treatment for Andy. We had to weigh up the benefits of symptoms versus treatment.” Andy took extended sick leave and braced for the onslaught of treatment.
Andy spent seven and a half weeks in an isolation room in a Sydney hospital. He had a fever for five and a half weeks straight. He spent his time covered in ice packs and sweated through shirt after shirt after shirt. His body ached, he couldn’t concentrate, he spent a good chunk of time delirious. Not the fun kind of delirious like after you come out of a general anaesthetic where you are pleasantly spacey and you happen have a particularly scrumptious nurse looking after you. No, not that. The scary kind of delirious where life happens to you and you are swept along in a nightmare.
Things were grim. His lung function dropped to just twenty-seven percent. For a person with CF, rapidly declining lung function is like a sinking Titanic. You can try this, and you can try that, but if the damage is too great – that ship will sink. There is nothing you can do about it but grab your nearest and dearest and flee to a lifeboat. Lung transplantation is like the lifeboat, an option of last resort. The cruel twist of fate is that Myco may place the lifeboat option in jeopardy. “Transplant became a serious talking point. Myco does not necessarily exclude me from being eligible but I have to jump through a lot of hoops and it may not medically be in my best interests at the end of the day. It’s a bit of a shit.”
The fight continues every day and there are more challenges ahead for the two. Conventional treatment is exhausted and the medications are not working. Andy remains on home intravenous antibiotics and is hospitalised when it all becomes too much to handle. He is under the care of two CF teams and two infectious disease teams – one of each in Sydney and Canberra. They are taking the definition of multidisciplinary team to the next level.
The impact of the last three years upon Andy is not limited to treatment and side effects. “It’s not just my lung function. It’s having an impact upon all parts of my life: emotionally, mentally, financially, socially. I have no idea how I’m going to feel when I wake up each day which limits my ability to engage with anything other than my living room. Having to lift my game and put in extra effort every day is grinding. I’m very fortunate to have a partner to help. Some days I am not physically or mentally strong enough to do treatment and I need help. It took a long time to accept I need help and can’t do it all on my own.”
Heidi has her own relationship with CF and it’s been an increasingly fractious one of late. Heidi has upskilled to advocate effectively and strongly on Andy’s behalf and navigate the hospital system. She’s learned that there’s no point stressing until such time that you are sitting down with a medico, drinking terrible instant coffee out of styrofoam cups, they are laying out all the facts, and those facts are categorically not stacked in your favour. She has a honorary medical degree after deciphering the meaning of all the medical terms that no doctor took the time to explain. She is resilient – helping Andy; working full-time; commuting to another city, in another state, when he requires specialist care; and finding ways to deal with the difficult emotions and thoughts that their situation stirs up. Heidi can now acknowledge she is Andy’s carer which was a hard transition for them both to make. Even harder still was realising that carers need care too, carers need self compassion, carers can’t do it all, carers sometimes need a break and to ask for help. “If I could speak to me a few years ago I would make a few suggestions. Put in place an outlet that gives you both mental and physical respite. Carers ACT are a great example of that. They provide short-term counselling and cleaning services which have been a huge help to me.” Heidi has met Survival Mode Andy – the version of Andy that comes out when he’s focused on the difficult task of simply staying alive. Survival Mode Andy is almost unrecognisable from the version of Andy that he naturally is and that the rest of the world sees – caring, supportive, friendly, one of a kind. “When I first met Survival Mode Andy I took everything so personally and I felt absolutely defeated. I couldn’t understand how the person who takes such great care of me could be, honestly, an asshole!” Now Heidi has a use for the ocassional appearance of Survival Mode Andy. It helps her gauge how Andy’s health is tracking so she can communicate any decline in his well-being to the doctors when he is not able to communicate for himself.
CFACT has played a huge and positive role in Andy’s health. “Cystic Fibrosis ACT have given us more time together. This is the ultimate gift. Donations go towards really practical supports for families. Nutritional supplements to maintain weight which helps the body fight infection, medical equipment that is maintained and efficient can cut down daily treatment and deliver the medications to the lungs for the optimal effect, recreational fees help Andy keep active and help clear mucous reducing the chance of harbouring infections in his lungs. When treatment takes the least time it has to, when you’re kept as healthy as you can be, and when someone helps coordinate it all for you, you get more time with your loved ones and to live the life you deserve. That’s what I get to do every day for local families and I know the impact that it makes first hand.”
To support Heidi and Andy and CFACT in this years 6500 Santa Speedo Shuffle donate right here.