5 Year TPNiversary

Emma, a young white woman with short black hair smiling proudly while standing in front of an IV pole of saline and carrying and infusion backpack both of which, are connected to her via tubes coming out of the waist of her pants.

In these anniversary pieces, I celebrate and reflect on the things I’ve learned from the past year and how it’s been going as a whole, in relation to my chronic illness journey.

The recap for those who aren’t in the know – TPN (total parenteral nutrition) is the form of tube feeding via my bloodstream that has been keeping me alive for the past 5 years. Each year I celebrate the anniversary of the day it saved my life since I’m so grateful for all the life lived while on it!

CURRENT HEALTH

First, I want to give an update as to where I’m at currently within my flare, and what I’m working on next.

Context:

February of 2024, I began persistently vomiting as a result of my worsening greater GI dysmotility. I was finishing my final semester in college at the time and was vomiting 20+ times per day. As a result of this, I missed my graduation and was bedbound for a year and a half (and now homebound for another year plus).

During this time, we were trying lots of medications to no avail, and one medication we tried resulted in me being stuck in a constant vestibular migraine for 9 ½ months that no one was able to break, which caused a perpetual state of vertigo, extreme sound, smell, and light sensitivity for almost a 10-month period.

Luckily, after a very slow process, I was able to get to a place of managing that migraine, even though I now have chronic migraine condition ;-/.  This year’s focus was on maintaining stability and working on improvements within this stability.

Current Status:

I’ve spent the past year caring independently for myself again now that I’ve been able to ambulate in my apartment, wear contacts and glasses again, and be able to look at screens (using laptop, TV, and phone) with minimal issues.

I’ve still remained isolated to my apartment which has significantly impacted the vomiting by minimizing it to once every other month (if that). I have 2 air purifiers to help with the odors of the food my neighbors cook, but all in all, I’ve felt much freer within my unit.

I have worked on venturing into the hallway without nose plugs to work on my odor tolerance and even had one wheelchair trip outside where I was able to take off my nose plugs and mask for a short moment. Going outside feels so foreign to me because I seldomly leave other than for doctor’s appointments. It’s surreal seeing time pass and how much of a world there is outside my apartment walls.

I’ve also been doing physical therapy twice weekly (I’m doing it solo, since I can’t have home health enter my apartment with my smell sensitivity) and have completed deconditioning and I’m working at gaining strength to help me not need to use the wheelchair for short trips like to doctor’s appointments.

Another thing I’ve been adapting to and incorporating into my daily routine is IV fluids. Since December 2025, my IV fluid regiment was updated from 500mL each day to 1 liter each day. It’s definitely been interesting to adapt to, as it’s an additional thing to carry (on an IV pole) plus the TPN backpack in the other hand. It seems that this will be a new long-term addition infusion for me, so I’m still in conversations with my infusion team on what options might look like for when I’m not homebound and back out in the real world as the infusions are 8 hours long.

Next year’s goals:

I’ve drafted this whole plan that I’ve been discussing with my doctors involving, “moving the [metaphorical] needle,” about different things we’ll be testing to try and end this nausea flare since, I have spent 2 ½ years confined to my apartment.

It has a multitude of different things we’ll be trying, such as me trying to sip sterile water, retrying pills, retrying vagus nerve stimulator, and if all fails, getting back in contact with my ENT about options to aid the odor triggers within my nausea.

I’m glad that with this year’s discovery of stability, we have a safety net to fall back to if my system gets overloaded and needs to return back to ‘baseline’.

OTHER PROJECTS & FUN THINGS

Aside from a very health filled year, there was a lot of personal growth for me in being able to get involved in things I didn’t have time to in previous years, or just physical capacity. I’ll share some of the things I got to be a part of (or that are still in the works)!

A Custom Infusion Backpack:

When I was in college, I had tried reaching out to a backpack maker about creating a custom TPN bag for me (at a time when my current bag had broken for the first time). I waited a few years and unfortunately nothing came to fruition, so I was thankfully, refunded.

This year, I reached out to someone who is very skilled in making custom bags and pitched my project. They accepted and we’ve been working on creating a new infusion bag that will better suit my needs, plus, now I have an established relationship with a designer, so I can reach out if I need the same bag made again since I need these to last a lifetime!

PIF-ECHO Research Project:

I am so happy I was able to participate and be accepted into a pilot study for a medical research project on teaching patient’s best practices for management and treatment of chronic intestinal failure.

It was a remote virtual study that met weekly for 12 weeks with lectures from leading experts in the field on a variety of topics pertaining to intestinal failure. We’re still meeting together to look into improvements for the national study, and I feel so fortunate to be a part of the very studies that my doctors look to in informing our best steps in my care.

Contacting Family & Keeping the Family Tree Growing:

As a part of a personal project, I’ve been building a family tree since my nausea flare began since both maternal and paternal sides of my family didn’t have a lot of information as to our history.

Through a lot of work and research, this project has helped put me in contact with a lot of family, and I’m really glad to now be connected. It’s helped improve my Spanish a ton (reading hundreds of Spanish documents, and old church baptism and marriage records, alongside reaching out to Spain’s civil registry services for records), and I now have both my parent’s family tree’s dating back to early 1700s and I feel really proud of how far back I’ve been able to find!

Best Friend’s Wedding:

This year my best friend got married!! Hearing this news was so exciting and I remember how heartbroken I was to realize that I would not be able to travel to be there in person to support them both on their wedding day. It was an emotional phone call, but my best friend and her wife are SO SUPPORTIVE, and we found a way for me to be a part of everything, even if it was remotely.

I was able to facetime and be there for the wedding shower and the wedding, reception, and ceremony. Everyone was so amazing and brought “me” (the iPad I was on) around the venues so I could see everything and chat with everyone. They even sent me all the games in advance for the wedding shower, so I’d be able to participate from home, and I also received a box for the wedding.

This is such a highlight of my year and I’m so grateful to now have the memories of these events, even though I wasn’t physically there.

Working on some pieces for the website:

I was able to catch up a little on some pieces for the website this year, particularly a piece I wrote about “Fashion With A Central Line”.

I wrote this advice piece (along with many others I’ve previously written) as a comprehensive piece focused on a particular subject usually not as commonly talked about in the TPN community to be able to share with others when they have questions, so I don’t have to write a book in the comments 😉.

This fashion piece discusses how I put on clothes as a person with a central line since tubing gets complicated quickly- it’s a bit of trial and error and personal preference, but I get into some of the specifics in that piece.

I’m really glad that this year, I got to be in a place of stability instead of a place of panic and discomfort, as I needed a bit of a break both mentally and physically.

Happy five-year TPNiversary, and let’s see where the next year on TPN takes me!