HELP MY LEGACY TO SAVE THE TPN UNIT IN SOUTH AUSTRALIA

I will be walking in the City to Bay event to help save the HPN unit, and I need your help!

I haven't been able to eat a meal in ten years... yes, you read that right.

So how do I eat? Well, I receive my nutrition through a vein in my heart every night for 12 hours.

My name is Annaliese Holland, a 24-year-old from Adelaide fighting for her life. I live with an incurable terminal disease called AAG (Autoimmune Autonomic Gangliopathy), which means my body creates antibodies that attack my nervous system. This disease has left me with multi-organ failure, requiring multiple major operations and resulting in the loss of over 10 feet of bowel. Because of the significant loss of bowel, I have been battling a condition called Intestinal Failure for the past ten years.

Intestinal Failure is a medical condition in which the intestines are unable to absorb enough nutrients and fluids to sustain the body’s needs.

As a result of my Intestinal Failure, I have been unable to eat for ten years. Whenever I eat, it leads to severe nausea, vomiting, extreme pain, and multiple bowel obstructions. I require a tube in my stomach to drain and another tube to receive medications. I also have a line in my chest, known as a Hickman line, which sits in my jugular vein. A Hickman line is a tube surgically placed into the jugular vein and threaded down into a large vein close to the heart.

I then receive TPN (Total Parenteral Nutrition). TPN supplies fluid and nutrients in a solution that is infused through an IV into the bloodstream. This solution contains fats, amino acids (protein), carbohydrates, and other nutrients to keep me healthy and hydrated. TPN provides all my nutrition via a drip every night, which runs for 12 hours.

TPN has saved my life. Without it, I wouldn’t be here today, nor would any other child or adult living with Intestinal Failure. TPN requires strict adherence to a sterile aseptic routine for setting up the drip and regularly accessing a vein. Failure to do this properly can result in sepsis, a life-threatening condition caused by the body's extreme response to an infection, leading to systemic inflammation, organ dysfunction, and potentially death. Any bacteria that gets onto or into your line can spread throughout your entire body.

You have to become your own nurse at home.

I spent nine months in the Women’s and Children’s Hospital when I was 15, where my mum and I learned how to administer TPN and fluids. During this time, we underwent extensive training, exams, and tests. This led to a home visit to ensure a healthy environment for TPN. I also spent nine months in hospital awaiting funding to go home on TPN.

TPN costs over $2,000 to $3,000 every week, not including all the supplies needed for setup and disconnection.

I was then transitioned to the adult HPN team at Flinders Medical Centre, where I had to undergo training again with a different technique. As I was one of the first teenagers to transition from children’s to adult care, it was discovered that different hospitals have different techniques.

Upon joining the adult TPN team, I was met by an incredible group, including the doctor who would save my life multiple times over the next eight years.

Dr Andrew Holt, who was the Director/Head of ICU at Flinders and also ran the TPN unit at FMC, set up what is known as 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.

If it weren’t for Dr Holt, I wouldn’t be here writing this now. He has dedicated his career not only to me but to the entire unit, fighting for awareness and ensuring the unit remains operational. TPN isn’t just necessary for those who can’t eat to survive; it also provides patients with both quantity and quality of life.

TPN isn’t just for intestinal failure or long-term patients; it is also used for short-term issues. This includes patients with Crohn’s disease or ulcerative colitis, after major bowel or abdominal surgeries to give the bowel rest, babies born with gastroschisis or failure to thrive, and terminal cancer patients who need quality of life so they can thrive while enjoying their last months, weeks, or even days, instead of starving.

Without TPN, I would starve to death. Before TPN, I was malnourished, underweight, and starving.

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. I have fought multiple bouts of sepsis, which has left me with almost no access left for another Hickman line. If I lose this last line, I will enter end-of-life care and will starve to death. I am in multi-organ failure, which has resulted in limited quality of life due to pain. I am now undergoing the removal of all my teeth at once to hopefully prevent further sepsis.

This is where I NEED YOUR HELP!

My legacy is to help others; I do not want anyone to go through what I have. I am now dedicating my days to helping as many others as I can and giving back to all those who have helped me. I owe everything to TPN and the HPN unit at Flinders over the past eight years. My team has watched me grow up and has become my second family while I have been sick. I want to ensure that anyone else receiving TPN care, or who will need it in the future, gets the same care I have — a place where they feel safe and heard.

Dr Holt has worked so hard to create the HPN unit, and now it is his turn to relax and enjoy retirement — a day I have been terrified of since the beginning. After all his hard work and long hours, it’s our turn to give back to him by keeping what he has created alive.

I was honoured when he asked me to help create awareness and keep the unit going. This man deserves it all. He will even walk the City to Bay with me. With a higher percentage of people needing TPN and numbers increasing, there has never been a more important time.

Imagine if one day you woke up and couldn’t eat again or if this were one of your loved ones needing nutrition to survive. It is SO IMPORTANT.

Right now, the unit is in a small, crowded office in ICU with limited space to care for patients. FUNDING IS IMPORTANT to enable:

A Fibroscanner costs up to $20,000 alone and is vital for preventing liver failure.

On Sunday, I will be participating in the City to Bay event to save the unit, create awareness, and honour the incredible Dr Holt, who has saved multiple lives throughout his career. He will be walking side by side with me.

This will be no easy feat, especially after having my entire spine fused last year and facing other major health issues throughout the year. But I will push myself to complete this so that I can continue my and Dr Holt’s legacy and support the future patients of the unit.

I also want to say thank you to all the medical staff who have cared for me throughout my journey, and to everyone donating — THANK YOU. I know money is tight at the moment, but even a few dollars make a difference, or even just spreading awareness.

I will be supported by other staff from the unit on the day. We will be rolling our IV poles the whole 3km in purple awareness tops and caps kindly donated by PNDU, a charity for patients on TPN throughout Australia, founded by Chris Walker, whose grandchildren both receive TPN and thrive while on it.

ALL money will be going to CHARITY ONLY! I will keep everyone updated on where the money has gone because it’s important to see what your donation has contributed to.

"I am only ONE, but I am still ONE. I cannot do everything, but I can still do something. And because I can’t do everything, I will NOT REFUSE to do the something that I CAN do."

Thank you, Dr Sharifa, for taking on the role.

Annie xx