Survival Mode

It’s been two years since we last caught up with Heidi and Andy. A lot has happened.

Monty happened. They are now a content family of three with their longed-for fur child.

A human child did not happen. “We found out that our second cycle of IVF failed on the same day we were told that the doctors had run out of treatment options for Andy. We were not able to do any more IVF cycles because of some of the medications that were keeping him alive. That day sucked.”

They celebrated their combined 60th birthday. They each turned thirty which is a milestone in anyone’s estimation. For these two however, it was extra special because of the tremendous effort it has taken for Andy to reach thirty years of age. “Because of Andy’s treatment demands it’s hard for him to travel anywhere except as a frequent flyer on the air ambulance. Instead, our nearest and dearest traveled to us for a lunch time celebration so we could be home and asleep by 10pm. It really was like a 60th!”

Heidi travelled to Nashville and left Andy in the care of his parents. Rascal Flatts sang Happy Birthday to her and made her entire life. 

On the whole though, the last two years have been a struggle for survival on every conceivable level. “We’ve been in survival mode for so long now that it’s become our normal.” The pair have been channelling Bear Grylls because of “Myco”: a multi-resistant bacterium named Mycobacterium abscesses. This bacterium has wreaked havoc in Andy’s lungs. Even when Myco is not actively growing in his lungs the lung damage left in its wake is irreversible. Andy’s ability to function and participate in life is now virtually non-existent.

EXPERIMENTAL TREATMENT

Eighteen months ago the infectious disease specialists had nothing obvious left in their tool kit to use in the fight against Andy’s  Myco. They had dug deep before to come up with options. This time Andy’s Canberra care team dug even more deeply and came up with a last-ditch and controversial treatment option. “It was an experimental treatment involving two intravenous and three oral antibiotic agents. There was no information available about the potential benefits or side effects. The drug combination is not approved by the Therapeutic Goods Administration (TGA) and is not funded by the Pharmaceutical Benefits Scheme (PBS). The intravenous treatment cost $1000 a bag. Andy was having three bags a day for three months. The hospital picked up the tab.”

Andy had zero other treatment options. The pair decided to give it a go. Within ten days of the experiment they began to see some improvement. “Andy began to have moments where he was present and could participate in life again. We could get out of the house and do small activities between infusions. We could go off the hook, and do completely crazy things like order takeaway pizza with extra cheese on top.” You just know you’re squeezing all the juice out of life when your pizza comes with extra cheese.

The gruelling treatment was supposed to last for three months. At ten weeks they hit a major glitch: there was an international shortage of one of the intravenous medications. Andy absolutely could not have one intravenous medication without the other. They were forced to discontinue treatment and hope ten weeks was sufficient.

A GLIMMER OF HOPE

The experimental treatment was a success. Andy has been free of Myco for twelve months now. It was a game changer: lung transplantation became an option. The couple had been told that Andy needed to be free of Myco for six months before St Vincent’s Hospital in Sydney would even consider accepting a referral to begin a discussion about the option of lung transplantation. At the six month mark Heidi and Andy started pushing for a referral and were successful in securing one. “When we travelled up to Sydney the transplant doctor said that Andy had a really bad quality of life. I immediately started to protest, but when I stopped and really thought about it, I realised that it is actually pretty shit.” Andy is at the end of the workup tests for transplant. Shortly they hope to know whether he is a successful candidate and will be placed on the transplant waiting list, or not. It could go either way. They are walking the terribly difficult line between holding onto hope, but trying to remain realistic. For the moment at least, they have a glimmer of hope that there may be a way out of this nightmare. “There is a chance that Myco could come back and send us straight back to square one. It’s in Andy’s best interests to push through the workup process and get transplanted.”

Once he’s listed, if he’s listed, they could receive the call for lungs anywhere from day zero to never. “The transplant team are like: ‘Don’t call us, we’ll call you!'” jokes Heidi. They will need to relocate to Sydney for at least three months after his transplant. “Financially it’s super tough. How do people do this?” asks Heidi. “I just don’t understand how people logistically and financially get through an experience like transplant.” Heidi has searched high and low for any supports to assist them. “At no stage of the process has there been support anywhere close to sufficient to address our needs. The NDIS is not a solution. The CF community is a resilient community that does incredible things to get by. Because the CF community is really good at getting by, and despite our best awareness efforts, there is limited understanding outside of the CF community about the truly significant effort it takes to survive. The CF community is a forgotten community.”

REAL LIFE

Andy very unwell

Andy in ICU after surgery for a bowel obstruction caused by adhesions. “The post-op recovery was the most painful and uncomfortable experience of my life. I lost 8kg from the surgery and deconditioning which I have not been able to recover.”

Myco is gone and lung transplantation is a possibility but the status of Andy’s health hasn’t changed. Their quality of life is unimaginable, even for their closest relatives and friends. It needs to be lived to be believed. Surviving is Andy’s full-time job. With overtime. And no penalty rates. He spends eight to ten hours per day, every day, doing health related activities. Andy can choose treatment, or he can choose death. He chooses treatment.

Their day begins at 7.30am when the first shift of Hospital in the Home (HITH) workers arrive to administer intravenous medication to Andy. Two more shifts of HITH workers follow throughout the day. They have taught Andy and Heidi how to flush his port-a-cath and disconnect from the IV pumps as his infusions end too late at night for a fourth wave of HITH staff to visit. Andy has a couple of hours between infusions when he is free from his drip pole. At times he has been too dysfunctional to achieve anything between infusions other than exist. Going to the toilet or heating up a meal takes it out of him and there are days when he cannot even do these basic activities without assistance. He requires constant care and cannot be left alone for long stretches at a time.

Twice a week he presents to the hospital for a five hour stint where he receives medications and physiotherapy, has blood tests, and meets with doctors. “I’m receiving all the medication and treatment that I possibly can but it’s not about improving my health. At this point, the goal of treatment is to hold the tsunami at bay.” Sometimes the tsunami makes its presence felt. There are times when Heidi comes home from a long day working two jobs to find Andy passed out from medically induced fatigue. Somehow she must get him into the car and to the hospital for urgent medical attention. At these times he is too critically unwell to remain at home. The aim of an admission is to closely monitor and stabilise him so that he can be discharged back into the care of HITH for more treatment. Stabilisation could take anywhere from a couple of days to a couple of months.

Perhaps the cruelest irony is that the constant high level drugs are taking an enormous toll on Andy’s body. His kidneys and heart are showing signs of stress. Not only do Heidi and Andy have to manage CF and Myco, but they now need to manage the collateral damage that the rest of his body is experiencing as a result of treatment.

“We had a wake up call when we completed the paperwork for transplant. Maybe we were in denial about how bad things are, but without a transplant Andy’s life expectancy is only eighteen months. That crumbles me. You can only imagine the intense fear that we both share.”

Each day truly is a fight for survival.

AWARENESS AND FUNDRAISING

Heidi, Andy, and Australia’s Prime Minister, Malcolm Turnbull

Heidi was awarded the 2017 ACT Young Australian of the Year award. “I don’t think I’ve ever been truly speechless, but learning about my nomination, becoming a state finalist, and winning the ACT award almost rendered me speechless.” Heidi’s award immediately increased the exposure of CF and Cystic Fibrosis ACT (CFACT) to people outside the CF community. Heidi had access to places and people that she wouldn’t otherwise have had access to. She can now have engaged conversations with people in a position to help CFACT move forwards. CF is now front and centre in the government’s agenda, in the ACT at least. It was an unexpected and mind-blowing experience for the couple that has not only affected their lives, but has positively impacted the awareness of, and support available, for CFACT and their community members.

The 6500 Santa Speedo Shuffle is more important than ever. As people with CF age, the disease becomes more challenging. As the bacteria become more resistant, treatment becomes less effective. As health declines, more and more supports are needed. “Andy has had a very challenging journey compared to some. We are living through a harrowing experience. We don’t want anyone else to live through this. We are passionate about raising funds that will provide support to the people with CF who live in the ACT to make life easier, and maximise their health outcomes.” They are asking people to donate again, to dig deep once more, and make a tangible difference to someone’s life. You may never meet the people who your donation helps, but they will think of you and thank you for each extra day that they live and thrive.

If you would like to make a donation please visit Head Santa’s All Stars fundraising page. Donations over $2 are tax-deductible.

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2 thoughts on “Survival Mode

  1. I hope Andy gets his transplant soon, I feel for you both. I have a son who is 47 and we have had some very scary moments in his life.

    Like

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