Food is among life’s simplest pleasures and a source of joy amid the madness of daily life. However, for 24-year-old Annie Holland, food is something she can only watch from afar. In fact, she hasn’t eaten a morsel for 10 years and relies on a IV drip for getting her daily dose of essential nutrients.
A rare disease has made eating impossible for Holland, which has left her to entirely survive on intravenous nutrition.
Diagnosed with Autoimmune Autonomic Gangliopathy (AAG), a condition that causes her immune system to attack her own nerve cells, Annie’s digestive system can no longer process food. An IV drip through which she gets essential nutrition is her only lifeline.
Holland’s condition is terminal and its symptoms starts in teenage itself.
“When I was a teen, I started struggling with dizziness, fainting spells and digestive issues,” Holland said.
“Doctors couldn’t figure out what was wrong with me until eventually a urine and blood test confirmed I had Autoimmune Autonomic Gangliopathy (AAG).”
What is AAG?
A rare type of autonomic neuropathy, in AAG, your immune system attacks your autonomic nervous system. This system controls involuntary body functions, like your heart rate, blood pressure or digestion. If you have AAG, you might faint or feel dizzy when you stand up.
Other symptoms include constipation, dilated pupils (Adie’s pupils), dry mouth or dry eyes, fainting (syncope), low blood pressure when you move to stand, and urinary retention.
The condition has turned more complex for Holland and as it deteriorated over the years, she had to get multiple surgeries to remove over 10 feet of her bowel. This has led to intestinal failure, where her intestines are not able to absorb enough nutrients and fluids to sustain the body.
“It’s hard to explain to people what it feels like to never be able to eat,” Holland was quoted as saying by New York Post.
“Food is such a normal part of everyday life for most, but for me, it’s something I can’t even consider. There’s a lot of isolation that comes with it. I can’t join in on social meals, and the smell of food cooking can make me feel incredibly sick. It’s hard to be around something that’s a normal part of life for everyone else but a danger to me,” she added.
Holland said she started getting sick at 12, but by the age of 15, it got worse.
“I had been back and forth to doctors with numerous issues. By age 16 my life started to change forever. By age 18 I was given a diagnosis. By age 22 I became terminal.
“I isolated myself from society because I was stuck going through hell whilst everyone moved on with their lives. Spending months and months on end in hospital, going months with no visitors. I didn’t want anyone to know I was sick. I just gathered I would get better and I could remove that “era” from my life. How wrong was I.
“I never thought this would be it. I never saw my life ending soon (heck no one does) but not being able to plan or even think about the future just breaks my soul.
“Months of horrible torturous symptoms, procedures, surgeries and awful medications. One of those being high dose steroids. Anyone who has had steroids knows the awful side effects that come along with it. One of the most obvious moon face and fluid retention. Leaving me sometimes gaining 20 plus kilos in one week.
“The pain, the suffering, the loneliness no one can understand until they have been in that position.
“Life is so bloody short, and if there’s one thing I want everyone to do for me is LIVE! Make the most of every day because the fact you woke up today, the fact you’re not stuck in bed is one of the most amazing gifts you can have,” she said.
Living with Total Parenteral Nutrition (TPN)
Total Parenteral Nutrition (TPN) is a medical treatment where a specialized fluid containing essential nutrients, fats, and proteins is delivered directly into the bloodstream. The solution flows through a Hickman line — a central catheter inserted into a large vein near the heart. For 12 hours each night, Annie is connected to this IV drip, which provides everything her body needs to survive. Without TPN, her body would be unable to absorb nutrients and would slowly starve.
However, life on TPN is far from straightforward. Each time Annie connects to the drip, she must follow a meticulous sterile procedure, as even the smallest trace of bacteria entering the Hickman line could result in sepsis — a severe and potentially fatal infection.
“I’ve become my own nurse at home,” Annie explains. “I had to learn to set up my TPN in a completely sterile way. If even a tiny bit of bacteria gets into my line, it can travel straight to my heart.”
Over the years, Annie has battled several episodes of sepsis — each one more severe and life-threatening than the last. These repeated infections have also damaged her veins, making it increasingly difficult for doctors to insert new Hickman lines.
“If I lose this last line, I will enter end-of-life care and will starve to death. It’s a terrifying thought. I am now undergoing the removal of all my teeth at once to hopefully prevent further sepsis,” she continues.
Not only the TPN comes at a huge cost ranging between $2,000 and $3,000 every week, it also poses a mental strain on her as she deals with the heartbreaking diagnosis.
“In 2022, my illness became terminal, and I was told that if my heart were to stop, I would not be resuscitated, and I started palliative care. Hearing that news was heartbreaking, but I’ve tried to focus on making the most of the time I have left,” she adds.
“I’m lucky to be supported by the adult HPN team at Flinders Medical Centre in Bedford Park. Dr Andrew Holt, who was the Head of ICU at Flinders, set up the HPN unit through the ICU. HPN stands for Home TPN. He looked after not only the whole ICU but also all the patients undergoing TPN therapy, both at home and in hospital. He was supported by amazing nurses such as Margie, Karrie, and now Mona. These incredible nurses have gone above and beyond in looking after and monitoring every TPN patient. This combined team of one doctor and one nurse navigates the whole of South Australia’s TPN patients. I wouldn’t be here today if it weren’t for Dr Holt. He has dedicated his career not only to me but to the entire unit, fighting for awareness and ensuring the unit remains operational.”