Hailey Hudson
Hailey Hudson’s journey to home tube feeding began abruptly in 2019, setting her on a path of resilience and determination.
Intrigued by her compelling story, we reached out to Hailey via LinkedIn, eager to learn more about her transformative experience. Her words, imbued with compassion, wisdom, and poignant insights, promise to inspire and enlighten. Join us as we delve into Hailey’s remarkable journey and discover the strength and grace that define her story.
Can you share a bit about the start of your home tube feeding journey?
In 2019, I suddenly began to lose the ability to eat and drink. I started having severe symptoms such as nausea, pain, and early satiety anytime I ate. Without meaning to, I lost 50 lbs in six months. Doctors couldn’t figure out what was going on. I continued to get sicker and was unable to maintain my weight or my nutritional status on my own. I was eventually diagnosed with gastroparesis (caused by my Ehlers Danlos Syndrome, which I have struggled with my whole life and have been very sick with since about 2015). However, it took until 2021, two years later, before I would finally get a feeding tube. The difference in my health and my body was IMMEDIATE!
What have been some of the biggest challenges you’ve faced?
At first it was difficult to find a formula that I could tolerate. I didn’t expect this to be an issue, but it was. I ended up getting on Kate Farms Peptide 1.5 and it has worked great for me. Another challenge that I had was with my dangler getting clogged. I had a dangler for a longer time before I got a low profile button, and I would go through periods where each tube would only last for 1-3 days before it would get clogged and I would have to go in through the ER to get it replaced again (I have a PEG-J, so it’s replaced via endoscopy each time, and I don’t do well at all with Propofol). Finally getting a button in 2023 was amazing!
How has tube feeding impacted your daily life and routines?
Honestly, less than I expected. I was on 24/7 feeds for about a year. But once my weight was stable, I switched to only doing feeds overnight. So once I unhook after waking up, I am free to go about my day like normal. And in the evening, it doesn’t take more than 10-15 minutes to set up my feeds before bed.
Are there any misconceptions about tube feeding you often hear?
Many people seem to struggle to understand whether tubies can or can’t eat by mouth. This is very individualized. Having a feeding tube does not automatically prevent you from eating. But for most of us, the reason we got a feeding tube was because we were struggling to get enough nutrition in the first place! I can eat a little bit by mouth, but it depends on how bad my symptoms are that day. My feeding tube makes up between 75% to 100% of my nutrition depending on the day.
What advice would you give to someone who is new to tube feeding?
Patience. It took a lot more time than I expected to adjust to having a feeding tube; learning how to use my feeding tube; finding a formula that I tolerated; getting into a routine with all my new equipment; and those sorts of things.
Has tube feeding influenced your career?
When I started my freelance writing career in 2016/2017, I started out writing about fitness and sports quite a bit. But as my health began to decline (taking my ability to exercise with it), I pivoted and starting writing more about healthcare, instead. I tell my clients that although I don’t have any letters behind my name, I am a “professional patient,” so I have a special perspective—it’s easy for me to speak (write) to an audience of patients (or an audience of providers), because I am that audience! These days, I do content marketing for healthcare and tech companies.
Any upcoming projects you are working on and excited about?
This is not related to my freelance career, but I am currently writing a book titled Still Good: Finding God’s Goodness When Chronic Illness Turns Everything Bad. This book is half a memoir of my chronic illness journey, and half a theological look at the goodness of God. My faith in God and the gift of salvation I have received through Jesus Christ has carried me through this entire experience, and I’m excited to share more about my story, which is really His story, through this book!
