Living in the Limbo

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Going To School With TPN

Image of Emma in a lavender tank top and lavender and white gingham pants with white platform sandals wearing her TPN backpack. Her Hickman is visible on her right chest. She has short black hair and has on a white floral tube clip.

*I am not sponsored by any of the brands of the products mentioned in this article.

Going to school while being on TPN was something I had never heard of anyone doing and I had no idea how I was going to be able to do it.

 

I was heading into my sophomore spring semester at college with a medical device for the first time in my life and I wanted to share the things I learned and things that I’ll be using as I head into my junior fall semester.

 

The first thing I want to say is that it is ABSOLUTELY POSSIBLE, and YOU CAN DO IT! As with anything in life, it’s going to differ for everyone, and it will take time and practice for you to find what works best for you, but it is definitely something that can be done.

 

LOOKING AT YOUR COURSE LOAD

Every college is different and mine in particular says that you can still be a full-time student while only taking 3 courses per semester. Depending on your condition(s) and when you want to graduate, you can evaluate what course load would work best for you to be able to manage both your illness and your classwork while not overloading yourself or falling behind.

 

It was important to me to still graduate the year I was originally supposed to and I had already missed a semester of school due to medical leave. I was fortunate enough to have come into college with a lot of credits already that had me in a position where I was able to graduate early if I wanted to.

 

A way to be able to spread out your classes while not overloading your semesters is to do either summer and/or winter classes. If you don’t want to pay for your universities’ classes, you could always sign up for some courses at a local community college and knock out some of your gen eds or other courses that could transfer over and count for some of your other classes.

 

I personally learned that for myself, I cannot do more than three classes per semester so, this summer I had three virtual summer courses to make up for the semester I missed last fall.

 

INVESTIGATE YOUR SCHOOL’S ACCOMMODATIONS

I am very fortunate that my college has an accommodation center where I was able to get my specific needs written out in a document that I can provide to each of my professors at the beginning of every semester so we can meet and discuss any further accommodations or any prospective course issues in advance of the course beginning.

 

I highly recommend trying to see if your college or university offers anything like this and if not, reach out to your professors in advance yourself sharing whatever you feel comfortable disclosing.

 

My letter that I get from my school does not disclose my illness or any of my medications, it simply discloses my needs for the course and what things might affect me during the duration of the course.

 

I’ve included here some of the things I specifically have accommodations for in case you need help of what things to mention:

 

  • I use a medical device that may alarm. If it does alarm, I may need to step outside of class to handle it. If it’s something I cannot fix with the items I carry in my bag, I will need to go home and not return to address the issue.

  • I am unable to stand for very long and therefore will need seating accommodations for presentations or any other standing activities.

  • I am unable to walk very far so any “field trips” will need to have their locations given to me at least 48 hours in advance so I can arrange a way to get to the destination.

  • I may experience absences from class due to the unpredictability of my illness and therefore may need extensions on assignments.

 

Alongside sending this letter to my professors I also include any doctor’s appointments that I already have scheduled that might conflict with class time, so they know already far in advance (I always send another reminder closer to the day).

 

I try to make my professors aware as well that doctor’s appointments might come up spontaneously if I receive a call that I need to come in urgently, etc. and those I can’t move or miss.

 

HANDLING HOMEWORK

I personally have a method that I’ve used since elementary school that has been encouraged to be used at my college which is to try and complete assignments in advance.

 

If you get a professor who lists everything for the semester or week online, try and break it up through the week to get ahead. If your able to start getting ahead at the beginning, it’ll pay off so much because you’ll get more rest time at home to deal with your illness and if you have any flares, you’ll have minimal work to make up (if any).

 

If you have a professor who only posts things one class at a time, try to do the work when it comes out instead of waiting. Depending on how large the assignment is, try to get smaller assignments done the day they are assigned and again, break up the larger assignments to do a little each day.

 

I personally mostly get professors who plan at least a week in advance so at the beginning of a semester the first 2 weeks are a little hectic as I begin my workload to get a week ahead.

 

If I have one professor who only posts a class at a time, I know I have two others who plan in advance, so I do those in advance and know as soon as I get coursework for this one class, I’ll go home and work on the homework that just got given.

 

Afterwards it’s smooth sailing because I’ll always be working on coursework for the following week leaving me always a week ahead. HOWEVER, I don’t have a lot of homework in general because of my specific major so I have a lot of time to rest which is really helpful since managing an illness is absolutely a full-time job.

 

This method may not work for everyone, but I’ve found it’s helped me with when flares come along to not have loads of homework and classwork to make up and for me to not feel overwhelmed about how much work I’m missing.

 

ADVOCATE, ADVOCATE, ADVOCATE!!

I know it’s much easier said than done, and honestly, it’s something I’m still learning. However, as time goes on and I expose myself to more scenarios, I better prepare myself and know how to handle different situations.

 

Don’t be afraid to live in the awkward or uncomfortable. It took me time to feel comfortable being in it but know if someone is uncomfortable with your illness and/or disability- that’s on them to fix!!

 

I am still actively working on listening to my body and following what it tells me instead of “ignoring it and pushing through”-no, no, don’t do this. The best advice I can give is PLEASE LISTEN to your body because if it’s trying to tell you something it’s telling you it for a reason.

 

Some things I’ve learned to do to manage my symptoms during class are:

  • Sitting during presentations: I mentioned this before but a lot of times, come presentation day the professor will forget (even with an email the morning of or day before). I always bring it up that I’ll need a chair or if I’m able to that day, I’ll carry one over to the presentation area myself.

  • Use elevators (if they have them): I always try to use my college’s elevators and I even leave early to give myself extra time getting to classes knowing that the elevators might be packed. I can’t use stairs so even if I’m chatting with someone, I’ll split off/or they’ll come with me to go use the elevator.

  • Stepping out for symptom management: If I have a sudden symptom such as pain, nausea, tremors (etc.) that is sudden onset and I need to go use medication for, I usually go to the bathroom to be able to take medication in private so I’m not being watched. Once I’m in a stall in the bathroom, I’ll take my medications and wait until I feel comfortable to return back to class.

 

**Read my article titled “Managing Illness Whenever You Leave The House” where I go into more detail on what things I always have on me when I go to school (or anywhere else).

 

THE BACKPACK PLACEMENT

I surprisingly had a lot of trial and error when it came to how and where to place my backpack.

 

I had originally tried having it on the floor but got way too anxious every time people would walk by that someone was going to trip or accidentally pull the line.

 

I then tried hanging it on the back of my chair so it wasn’t on the floor but I found myself in a new predicament of how to get into my chair because with my line coming out of the right side of my bag and college desks only having an arm on the right side of the chair (meaning I had to enter the seat from the left and hang the bag on the left) I couldn’t get into the chair.

 

Also hanging it on the back of my chair proved to not be very effective for me because in classes that I had to get in and out of the chair, it was a lot of work to get it up and off the back. It was also very inaccessible if I needed to get anything inside of my bag.

 

To continue finding the best method for me, I arrived early to class to try different ways of getting into the chair without a classroom full of people watching me.

 

I found the best method that works was setting my bag on the floor but having it on the inside of the left leg of the chair with the TPN line side facing towards the front of the class. I’ve included an image recreated here at home to show the front and back view of what I mean.

 Once I sat down, I’d coil up any excess of the line (not super tight just in case it gets pulled) and clip it together with a tubie clip (a clip made to hold together tubes).

 

This allowed me to reach and access my bag quickly and in a not so obvious way. It also allowed for me to easily get in and out of my chair if I needed to. It allowed me to keep a close eye on my line and minimized trip hazards since it was tucked under my seat.

 

I recommend trying different methods with whichever type of chair your college or university has and if you feel uncomfortable trying something out while people are in the room, try and either arrive early or go to a conference room or other study area that has those same chairs and try out some different methods and scenarios to find what works best for you.

 

THE PUMP

Ah yes, saving the best for last- I guess it’s more like the worst for last. The TPN pump-oh boy.

 

So, if you are also currently using a Curlin Medical pump, then you know that they were the pumps used back in the 1980s and are nice and noisy and sensitive to everything.

 

I used to be on a CADD Solis VIP pump which was nice and quiet (more on this in my blog post titled “New Year, New Tubing”) but got switched during the national shortage of tubing for the CADD pumps.

 

So, this pump is super clunky and will alarm even if you remove the batteries because it has some sort of backup system that keeps it going (it’s kind of like the Nokia phone of pumps).

 

I have had my fair share of pump alarms going off in public and honestly, it’s the times I’ve wanted most to be a sea creature to have a shell to crawl into and hide.



I’m still working on not feeling embarrassed when the pump goes off and I’m getting better about it in more public settings.

 

If it goes off, as best as you can (which will come with practice), calmly ignore any looks you might get and unzip your bag to get to your pump. See what the problem is and if it’s an actual issue. A lot of times my pump alarms because of a “sticky key” meaning I leaned my bag in some way that a button got pressed or held down.

 

A great way to shut off the alarm quickly is to hit the silence button that way it will stop alarming and then you can continue looking at the screen to address and fix what the issue is.

 

If it alarms again or you can’t get back to the “run” screen AND can’t turn off the pump either to reset it (once again the wonders of the Curlin pump), go ahead and clamp your lines, and lift the latch that you insert to prime the tubing. By doing so it resets the system and will allow you to turn off the pump and turn it back on.

 

When my pump turns on it gives 3 loud beeps. To prevent the deafening sounds as it awakens, I found where the speaker comes out from, and I simply put my thumb over it to muffle the sound as it turns back on.

 

Also, in some particularly quiet moments during class, the pump can be heard pumping which can make you feel self-conscious but just know that you have nothing to be ashamed of! The same way someone might use crutches to move around, you have this literally keeping you alive!!

 

Again, it’ll take time and practice, but you will definitely be able to do it and become a pro at the methods that work for you!

 

As always, with any questions please feel free to reach out to me using the message form below the article!