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How Trinity made her way
Her hair is pulled back neatly; and her curious, warm eyes show a determination for life. Meeting Trinity Lowthian makes you realize how precious life is in a way that is hard to describe. The sportive young woman was diagnosed with Autoimmune Autonomic Neuropathy[1] in 2022. But her strenuous health journey has started much sooner.
“You know your body best and your health is worth advocating for. Know that it won’t be like this forever and there is always going to be light at the end of the tunnel.”
The twenty-two-year-old senior at the University of Ottawa radiates such a zest for life and lives so much in the moment that you would not guess that she is diagnosed with a rare autoimmune disease with no potential cure. In 2016, she started to not tolerate different foods and believed she had developed a new food allergy as she had been dealing with such before. So she began to track what she was eating, journaled everything, but came to no conclusion while it got worse by the day. Nausea and body pain accompanied by some occasional vomiting were the main symptoms. As things did not change for the better, her mom decided to get an appointment at the hospital. The waiting list was very long, and a year passed.
Finally, when it was her turn and she had run dozens of tests with no clear results, the doctors discarded her case. “This was actually one of the hardest parts, when some doctors just did not believe me, told me my condition was probably psychological. I even started to doubt myself. Not being taken seriously was one of the worst experiences during that time,” Trinity recalls this period when she was merely a teenager. While others started to go to parties, she started a health journey with no clear outcome. Luckily, she was not alone: Her mom insisted and advocated for her again and again. In one of her many hospital stays, it finally became clear that neither Trinity’s stomach nor her intestines were working right; her first feeding tube was placed.
Nevertheless, she continued losing weight and feeling sick. When she went back to the hospital, it became a vicious circle: off to the hospital, back home, and then returning to the hospital again. She started on tube feeding, but her weight kept dropping, and her health did not improve at all. When her weight reached an all-time low because she had to stop eating altogether, PN was last resort. When asked how she felt at the time about getting an inserted Peripheral Inserted Central Venous Catheter (PICC), her new "life line", she said she was so malnourished she could not even think properly. But in the end, she was excited to finally receive nutrients again without having to endure pain or nausea.
During every stay in the hospital, Trinity was supported by a nutrition support team with a doctor, a nurse and a dietitian who followed her case daily. This is where she learned to administer parenteral nutrition herself at home and in her case, she does it during the day so she can stay disconnected at night. Twelve hours during her waking time, she carries a backpack containing the nutritional solution along. Through her catheter, the nutrients are administered very slowly to her body. At night, she occasionally undergoes hydration but remains disconnected otherwise.
At the beginning, she felt isolated and even support groups felt depressing. For Trinity, personal connections played a vital role in building her support system. Trinity formed strong bonds with individuals she met on her health journey who shared similar experiences. Notably, friendships with former hospital roommates endured.
To know that it is okay to ask for help is crucial. First, Trinity tried to do and manage everything by herself, but without any accommodations it became really hard. Today she says she wished she had opened up to people from the very beginning. “I did not want to say that I was struggling, and at school I even wanted to rush to graduation and do everything as good as before or even better. It took a while to realize the importance of making things as easy as possible.”
No matter what your clinical picture is, in order to deal with it well, you need an individual mixture of help from outside and the inner attitude to make life as easy as possible for yourself in the present moment. Trinity for example, tries not to think too much about the what-ifs. Just when she has new doctor appointments, it makes her anxious. Therefore, she remains in the present to keep her from worrying which does not help anyone.
Today, Trinity is an undergraduate at the University of Ottawa and she is doing her bachelor in nutrition. “I have learned how important nutrition is and what a difference it makes to receive the nutrients the body needs.” The same is true for movement. And Trinity has been a competitive sportive person as long as she can remember: Now she has switched to fencing as a sport and has leveled up her game. With her will-power, the support of family and friends and her fencing coach Paul ApSimon, she managed to become qualified for the Paralympics in Paris this year.
While she was rather careful with everything at the start, her attitude has changed: Now she focuses on living her life. Instead of letting the disease dictate what she does, she does what she wants and if necessary, things are simply adapted. Last summer, she passed her driver’s license and a car got customized to her requirements.
Another example of making things work: Once her CVC got infected and the access had to be renewed. This permanent catheter is usually located on the right side of the chest, as this is the best way to get to the heart. But in her fencing practice, the right side of the chest is the main target so she needed to cover the line and it was very painful whenever she was hit. So she insisted on getting it on the left side when they had to replace the line. And this is exactly what she wants to tell everybody in a similar situation: “You know your body best and your health is worth advocating for. Know that it won’t be like this forever and there is always going to be light at the end of the tunnel.”
If you are in a similar situation to Trinity, you are probably familiar with many challenges. Challenges that did not exist before the illness. Some of them may seem insurmountable, but with your energy and the help of family, friends and professionals, you can quite certainly achieve a lot.
The medical abbreviation PN stands for Parenteral Nutrition and refers to nutrition administered intravenously to people like Trinity who are unable to use their digestive tract at all. Parenteral means “outside the digestive tract”. While enteral nutrition is administered via a tube into the stomach or small intestine, parenteral nutrition bypasses the entire digestive tract, from the mouth to the anus. If parental nutrition becomes the only way the body receives nutrients, it is called Total Parenteral Nutrition (TPN). For certain conditions, PN may be required for short or long periods of time, even for a lifetime. Depending on their own preferences, people on PN can do this overnight or during the day with the nutritional formula transported in a backpack. After having got a complete training provided by a skilled nurse, you can do everything at home.
Some people only require partial parenteral nutrition as they absorb not enough nutrients from their food. However, they can still eat orally. Nevertheless for both groups parenteral nutrition is a life-sustaining therapy which provides essential nutrients (proteins, carbohydrates, fats, vitamins and trace elements) intravenously to sustain their life functions.
1. Autoimmune autonomic neuropathy, also known as autoimmune autonomic ganglionopathy or acute pan dysautonomia, is a rare type of autonomic neuropathy and causes widespread and severe autonomic failure. In AAN, your immune system attacks your autonomic nervous system which controls involuntary body functions such as heart rate, blood pressure or digestion.
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