3 Year TPNiversary!
I’m so excited to be celebrating three years on TPN! As I’ve been doing each year, I like to use this day to reflect on things I’ve learned from the year and how it’s been going as a whole in relation to my chronic illness journey.
The usual recap for folks who aren’t in the know- TPN saved my life and is quite literally the only thing keeping me alive today. I celebrate the anniversary of the date I received it since I am so thankful for the life it’s given me!
CURRENT HEALTH
I wanted to start off with how my current health is since I feel it would be dishonest to leave it out since it’s impacted me for the past 6 ½ months.
What:
To explain what happened, on February 16th 2024, I began vomiting and essentially never stopped (except for a week ago where we’ve been able to make it not happen every day). I wasn’t vomiting once a day; it was honestly pretty brutal, and this was going on while I was still in classes and working on a show at the time.
Current Status:
Since graduating my health has declined, and I was no longer able to take care of my central line (due to how much the vomiting was impacting day to day functions) so my mom flew from Texas to come live and take care of me during this time.
Medications:
My whole medical team has been working very hard on trying to put a stop to this vomiting since it started back in February, and we’ve been trialing numerous medications since (even going so far as to order medications from Canada). As of 2 weeks ago we found a medication that has disrupted the pattern of nausea but we’re still searching for a medication to help with the root cause of why this is happening (my gastroparesis worsening).
I’m working on trying to walk a little (since I’ve been in bed 3 months) but it’s still been a bit of a struggle since my nauseas still not fixed.
I know this whole nausea situation won’t be forever (this is just the nature of living with chronic illnesses), and I can’t wait to actually get started on my life and career once it’s handled!
So now that I’ve gotten the current update out of the way, now onto the stuff I learned from the year:
SWITCHING INFUSION PHARMACIES
It’s been a long time in the making but I finally switched infusion companies in February and it’s been the best decision ever! My new infusion pharmacy has an excellent care team from the dieticians and nurses to the pharmacists. The biggest impact with switching for me is the whole supply delivery process. It used to be a nightmare with my previous company but now it’s very easy and I don’t have to worry about my shipment not showing up on time. It took a while for me to be able to feel comfortable switching companies because this new company requires a patient to be fully independent in their care of their medical devices (from dressing changes to drawing labs) and I was still in training for a while by my previous company’s nurse.
DRAWING MY OWN LABS
My biggest accomplishments in my health realm of life, was drawing my own labs. Drawing labs was something that took me almost a year to learn and I’m so proud of how easy it’s gotten. I should preface that since I have a central line, I’m accessing blood through that and not via a needle prick on my arm. I learned the best method on how to drop them off at the hospital since a lot of times I would have to verbally list all the lab orders that were needed (you can guess that it’s a pretty long list ;-)) so now I write it out each time on a piece of paper. I draw labs once a month so I’m glad it’s been going so smoothly the past 6 times!
An image of a part of Emma’s monthly lab draw setup.
ADMINISTERING IV MEDICATIONS
After the whole vomiting issue started in February, I needed to transition to more IV medications since my body wasn’t tolerating some of my oral medications anymore. The cool part of this is that I learned how to administer three new medications on my own (which sounds like a small number, but they’re all administered differently so knowing these basics helps you be able to administer lots of different types of meds in the future). Also, I wasn’t given instructions; you receive a prescription which will detail a dosing but the process of administering I needed to figure out on my own.
The first one that I learned was IV nausea medications; I had to figure out how this would work since the meds are drawn up from a vial and then need to be administered from a syringe and not a needle. I discovered that I can take off the needle from my 10cc syringes and that the syringe gauge fits perfectly at the end of my lumen’s clave to administer the medication.
I then learned how to administer IV fluids which was pretty straight forward and simple. The only tough part is it’s a 5-hour infusion anytime I feel thirsty (since I stopped being able to drink water in May).
The last one which came up at an inconvenient time in terms of learning was IV Tylenol. My prescription didn’t come with a flow rate (gravity drip tubing comes with a dial to set the flow rate) and I had an ocular migraine, so my vision was blocked by auras as I tried to read the IV Tylenol medication slip which had a dosing chart but in microscopic letters. So, I was trying to read these miniature letters and do the math to calculate the flow rate just to get some Tylenol. The good news is now I know the rate, so I’ve been all set every time I’ve needed Tylenol since then.
THE BACKPACK IS NOT IMMORTAL
I encountered some ‘firsts’ this year in terms of things regarding the backpack…it can break. I had kind of been taking the backpack for granted for the first two years I had been using it but something I had neglected to consider was that I shouldn’t be treating this backpack like a regular backpack. It’s truly the keeper of my lifeforce and it’s attached to me 24/7 every day. With a regular backpack, I wouldn’t worry about setting it down on a dirty spot on the ground or flinging it over my shoulder when I get up – with my medical backpack, I have to maintain it for as long as I can.
Last June I was in my apartment and lifted a strap on my backpack to pull it over my shoulder, when the metal swivel clasp snapped in half from the repeated stress on this area from the weight of the bag. I panicked as I have no backup bag nor is this bag sold anymore (and I did reach out to the manufacturers just in case). Luckily, I found a local cobbler who was willing to work with me on a tight deadline to order a new part and fix my bag.
This past October I discovered that sometimes my medical tubing can arrive faulty. I had gone to a rehearsal after just changing my TPN and discovered when I arrived back home that my tubing had leaked due to a non-visible hole somewhere in the filter. The mess that it created was something that took me over a week to clean out from my bag. You could say I learned my lesson there- always check for leaks from my tubing before zipping up my backpack.
Since discovering the backpack is not immortal, I’ve been working with a custom backpack maker since late October since I know my current bag won’t be able to last the rest of my life (and so my current bag can become my backup bag).
It was a medically jam-packed year but all that means is that it’ll help me be more informed on how to handle future issues with my conditions since I’m becoming more knowledgeable with my own care.
Happy three-year TPNiversary and wishing everyone a day of celebration of life!
*Also, I plan to update the website - it’s been a year since I’ve been able to keep up with it, so hopefully once I’ve gotten more stable I’ll be able to do so!*