5 Emotional Stages I Faced While Starting Home Parenteral Nutrition

Home parenteral nutrition (HPN) is a complex type of life support where artificial nutrition is given to patients via IV. Each infusion of nutrition is tailored to the individual. Patients need HPN when a serious disease causes malnutrition,  and there are no other viable options to receive nutrition. HPN is not a treatment, nor a supplement, nor a cure. It is simply a means surviving another day.

The emotional baggage that comes with living on HPN is one nearly all patients incur. The risks are scary and the side effects are exhausting. But in the grand scheme of things — being alive is the main goal, right?

I am a warrior on the drip. Here are five stages I faced emotionally while starting my HPN treatment.

1. Denial

I was desperate to not become dependent on HPN, for more reasons than I could count. The main being the risks. My team and I did everything to avoid it until my body gave me no choice. Unfortunately, you don’t get to decide whether or not your intestines will absorb tube feeding, and you can’t stop the symptoms of malnutrition with willpower. I was admitted to the hospital to start parenteral nutrition (PN). I didn’t want to believe it. I was so emotionally distraught. How could this be my life at the age of 19? So I kept trying to eat, only making myself sicker. I gave my body a timeline. “I will only be on PN for two weeks max.” Then a month passed. “One more month and I’m off, I don’t care if the doctors disagree.” Almost three years later I still long daily to safely graduate from HPN and eat like a normal person.

2. Fear

For me, starting HPN was like the end of the world. I thought my life was over. The end of my social life, freedom, swimming, lifting, and more. My self-confidence went out the window, mainly due to my visible central line. I was terrified of the risks the doctors put forward. Bloodstream infections, blood clots, liver damage, electrolyte issues, and more. All of which I have dealt with and survived. Was the only chance I had of staying alive also going to be what killed me?

3. Thankfulness

It took a while. I began to have energy. I gained weight. I was able to walk and shower without help. I had the strength to fight the diseases my body was throwing at me. I felt human again. Because of HPN, I was well enough to contribute in life again. I’m now able to cook, clean, travel and live. Malnutrition wreaks havoc on the body causing fatigue, fainting, hair loss, weakness and difficulty breathing. Without HPN, I wouldn’t be alive today. I am thankful for the daily infusions, the doctors who support me, and the pharmacies who make the PN.

4. Hate

Hate — a flip turn of emotion after I find myself thankful for HPN. Perhaps it’s because I have to miss out on social events due to being tied down to an IV pole. Or because I developed life-threatening septic shock from its complications. Or because every time I looked in the mirror, all I could see was my visible central line which is the first thing people notice about me. There are dozens of reasons individuals go through despising their lifeline. Spending every day plugged into a wall takes a lot from you. There are days where I don’t even want to hook up to PN. I want to give it all up. I scream inside out wanting to be “normal.” The look of disgust I give the equipment and infusion, as I don’t have the mental stamina to perform aseptic technique again. So I skip a night. And I pay for it.

5. Acceptance

After skipping an infusion, I am reminded why I need it every day. I am reminded of why I pump 2.5 liters of hydration and nutrition into my heart — because I cannot live without it. Without HPN, I’d be nothing but a shell. I accept over and over again that in order to live I must infuse. Once you reach acceptance, you may not stay there. The order of the five stages changes and they are repeated. You may find yourself going through each stage over a period of years. Or all five stages within 24 hours. That is OK. You’re living a life unimaginable to most others, and you’re doing it so you can exist on this earth. Allow yourself to feel the emotions, travel through the stages back and forth, and feel how you feel. After all, it isn’t an easy journey being an HPN patient.