For most of us, the idea of an evening around the dinner table seems a perfect way to rest with friends and family.
But for 24-year-old Annie Holland, only the smell of food makes her feel sick.
In fact, for the last 10 years she has not been able to eat one thing.
Instead, Annie has been forced to survive the food administered by IV to keep it alive. And she has been told her condition is terminal.
“When I was a teenager, I started fighting with dizziness, fading magic and digestive issues,” Annie says of Adelaide.
“Doctors cannot understand what was okay with me until eventually a urine and blood test confirmed that the autonomous autonomic ganglopathy (AAG).”
Annie explains that AAG is an eternal disease that makes its immune system attack healthy nerve cells.
In the case of Annie, the situation has deteriorated over the years. She had to have numerous operations to remove over 10 meters of her intestine. This has left it with intestinal failure, a condition where the intestines cannot absorb nutrients and sufficient liquids to keep the body.
“Hard hard to explain to people what he feels like he can never 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 is a lot of isolation that comes with it. I can’t join social meals, and the smell of food cooking can make me feel too ill. It is difficult to be about something that is a normal part of life for everyone else, but a danger to me.
“At the age of 12 I started getting sick, not thinking too much about him. At the age of 15, he was deteriorating. I had been back and forth with doctors with many issues. At the age of 16, my life began to change forever. At the age of 18 he gave me a diagnosis. At the age of 22 I became a terminal.
“I wasolated myself from society because I was stuck going through hell as everyone continued with their lives. Spending months and months in the hospital, spending months without visitors. I didn’t want anyone to know I was sick.
“I never thought it would be. I never saw my life ending soon (hell no one does) but not being able to plan or even think about the future just breaks my soul.
“Months of terrible torturing symptoms, procedures, surgeries and medicines. One of those who is high -dose steroid. Anyone who has had a steroid knows the terrible side effects that come with it. One of the most visible holding of the face and moon fluids. Ever leaving me winning 20 plus pounds within a week.
“Pain, suffering, loneliness that no one can understand until they have been in that position.
“Life is so short bloody, and if there is one thing I want everyone to do for me is live! Use as much as possible every day because the fact you wake up today, the fact that you haven’t stuck in bed is one of the most amazing gifts you can have.”
The only life of Annie’s life is total parenteral food (TPN), a medical treatment where the fluid containing nutrients, fats and essential protein is delivered directly to the bloodstream.
The TPN solution is administered through a Hickman line, a central catheter located in a large vein near the heart. Nighto night for 12 hours, Annie is tied up to an IV drip that goes all night, providing the nutrients it needs to her body. Without TPN, Annie’s body will suffer from hunger.
But living in TPN is not as simple as it may sound. Requires strict adhesion to a sterile configuration whenever it relates to the point, as any bacteria entering the Hickman line can lead to sepsis-a life-threatening infection.
“I have become my nurse at home,” Annie explains. “I had to learn to put my TPN in a completely sterile way. If even a handful of bacteria gets into my line, it can travel straight into my heart. “
Over the years, Annie has endured many sepsis periods, each more dangerous than the last. Infections have left it with limited vein access, making it more difficult to put a new Hickman line.
She goes on: “If I lose this last line, I will get into the care of the last life and die from hunger to death. Is a terrible thought. I am now subject to removing all my teeth immediately to prevent further sepsis. “
Despite its nature to save lives, TPN comes at a considerable financial cost. Treatment costs Annie between $ 2,000 and $ 3,000 each week, and this does not include the additional supplies needed to maintain a sterile environment.
Costs aside, psychological strain is a large part of Annie’s daily life, as it floats in the reality of a terminal diagnosis.
“In 2022, my illness became terminals and I was told that if my heart would stop, I would not be resurrected and I started palliative care. Hearing this news was heartbroken, but I have tried to focus on the most time I left,” she adds.
“I am lucky to be supported by the HPN adult team at the Flinders Medical Center at Bedford Park. Dr Andrew Holt, who was the head of ICU in Flinders, placed HPN unit through ICU. HPN stayed at home TPN. He cared not only for all ICU, but also all patients under Hospital. Amazing nurses like Margie, Carry, and now Mona. the whole unit, fighting for consciousness and ensuring that the unit remains functional. “
Despite her fighting, Annie is determined to make changes for others living with TPN. It has launched a Gofundme campaign to raise awareness and support for the TPN unit at the Flinders Medical Center. Its purpose is to ensure that future patients receive the same level of care it has been given over the years.
“I want to help make the unit work and provide better facilities,” Annie noted. “For now, the unit is in a small office, crowded in ICU with limited space to take care of patients.”
The funds raised through its goals will go to the employment of additional nurses, providing training for medical staff, supporting patients’ families with TPN and purchasing essential equipment as a fibrosskanner, which can cost $ 20,000 to monitor the health of the liver.
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Image Source : nypost.com