For most of us the idea of an evening around the dinner table seems a perfect way to wind down with friends and family, but for 24-year-old Annie Holland just the smell of food makes her feel sick. For the last 10 years she hasn’t been able to eat a thing.
Instead Annie has been forced to survive on IV-administered nutrition to keep her alive. And she has been told her condition is terminal. “When I was a teen, I started struggling with dizziness, fainting spells and digestive issues,” Annie 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).” Annie explains that AAG is a lifelong disease that causes her immune system to attack healthy nerve cells.
In Annie’s case, the condition has worsened over the years. She has had to have multiple surgeries to remove over 10 feet (3 metres) of her bowel. This has left her with Intestinal Failure, a condition where the intestines cannot 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,” Annie says. “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.
“At just age 12 I started getting sick, not thinking much of it. By age 15 it was getting 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 life’s. 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 know 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.”
Annie’s only lifeline is Total Parenteral Nutrition (TPN), a medical treatment where fluid containing essential nutrients, fats, and proteins is delivered directly into the bloodstream. The TPN solution is administered via a Hickman line, a central catheter placed into a large vein near the heart. Every night for 12 hours, Annie is hooked up to an IV drip that runs all night, providing the nutrients her body needs. Without TPN, Annie’s body would starve.
But living on TPN isn’t as simple as it may sound. It requires strict adherence to a sterile setup every time she connects to the drip, as any bacteria entering the Hickman line can lead to sepsis – a life-threatening 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 endured multiple bouts of sepsis, each one more dangerous than the last. The infections have left her with limited vein access, making placing a new Hickman line harder. She continues: “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.”
Despite its life-saving nature, TPN comes at a significant financial cost. The treatment costs Annie between £1,650 and £2,470 every week, and that doesn’t include the extra supplies needed to maintain a sterile environment. The costs aside, the psychological strain is a major part of Annie’s daily life, as she navigates the reality of a terminal 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.
Despite her own struggles, Annie is determined to make a difference for others living with TPN. She has launched a GoFundMe campaign to raise awareness and support.
“I want to help keep the unit running and provide better facilities,” Annie noted. “Right now, the unit is in a small, crowded office in ICU with limited space to care for patients.”
The funds raised through her GoFundMe will go towards hiring additional nurses, providing training for medical staff, supporting families of TPN patients, and purchasing essential equipment like a Fibroscanner, which can cost £16,400 to monitor liver health.
“My illness may be terminal, but I want my legacy to be about helping others. I’m not giving up. There’s so much more I want to do to help others, even if my time is limited,” she says.
