January 10th was a huge day, a day I had been aiming to make it to through my whole line of treatment.

The first day back at school.

I had gone through so many doctor’s saying I’d never be able to do it and that it wasn’t safe, etc., and here I was, following my own goals and going back to school.

It was the start of my sophomore spring semester at college, and I had virtual classes for the first 2 weeks.

I was happier about this than the usual population because it gave me an opportunity to gauge how much energy it would take to do class and how my physical pain would respond and react while trying to “look and act normal” in class.

The first virtual class went great, and it was the first time I was seeing my old peers on the camera. I was so nervous but also so excited to see them.

During my second class, I started having sharp abdominal pain midway through the class and it lasted for the rest of the time. I made it through trying my best to not show it but after the class ended, I sprinted to the bathroom and had a dry heaving spell.

I did my homework lying down in bed since I can’t sit up at a desk for very long.

I got really fatigued in the evening because I did too much work. 

I ignored my fatigue (bad idea) and showered later that evening. I also accidentally cut my ankle a small bit when I was shaving, and I completely forgot that I was on blood thinners so this cut WOULD NOT STOP bleeding even after band aids and pressure (it did stop bleeding after the 2nd day, but it was a small cut, so it was more of an annoyance than concern).

The following day I had my next class which I was super excited about. It was an Ethics of Eating course which I took completely for the irony (also because I was curious about the psychology behind eating).

I woke up to be nauseous since I had tried to make my bed that morning. I also had a lot to do in the day like go to the pharmacy so I took a Lyft since I still couldn’t walk far. From doing too much yesterday and today I had a nausea and tremor attack midday as a consequence of overusing my energy.

It was still and IS still a very difficult thing for me to grasp that my body does not have ANY energy reserves. Even not doing a physical action but a mental one (such as reading) would result in just as much fatigue as walking would. -Still very hard for me to wrap my head around.

I had a meeting later that day with my school’s disability and accommodation center to get academic accommodations for my illness (since my flares were unpredictable).

*if you’re interested on more about how to go to school with TPN, read my Advice & Thoughts article titled, “Going to School with TPN”.

On January 12th I had to wear a sweater with my lumens on the outside of it because I had an infusion later in the day and it was winter, and I didn’t feel like undressing for the infusion for them to be able to get to my central line. I was super nervous with my outfit because it was the first time I was wearing visible lumens to my zoom classes, and I was so self-conscious about it.

I made it through class and was excited to FINALLY GET MY IRON INFUSION (had been waiting since AUGUST).

My dad and I went over to the infusion center, and they turned us away saying we had an “appointment” and not an infusion.

WHAT?!

We went to the other office, and it was in fact AN APPOINTMENT. They scheduled me for AN APPOINTMENT and not an infusion?!!

AGHHHH.

Anyways,

We met the nurse and doctor, and it was a really confusing time because I wasn’t prepared for the appointment because I thought it was an infusion (because I was told it was an infusion-go figure). They were asking me medical history etc. and I kept saying wrong things because I was in the complete wrong mindset and was not properly ready to explain 2 years of history.

Unfortunately, this did affect things.

They took labs, urine samples, blood pressures, orthostatics, etc. and I was given yet again another stool sample kit to take home to bring back.

Their team seemed really enthusiastic about figuring out what the illness was, but I thought to myself, “that’s cute, thank you but good luck”.

That evening I fell asleep at 6:10p.m. from all the fatigue from the day.

The next day I received multiple phone calls during class from the hospital. I turned my camera off on my virtual class and picked up the phone.

It was the hematologists and they said, “you are severely anemic, and we need you in the hospital to do an infusion like, now, so how soon can you get over here?”

OHHHHHH HO HO!!!!!!!!!!

YOU MEAN I’VE BEEN SEVERELY ANEMIC FOR MONTHS? And when my dad and I said this over, and over, and over again to get an infusion….we were correct all along?

Ah yes- the modern-day medical system.

So immediately after my class I headed to the hospital dropped off my stool sample and read through my lab reports in the infusion waiting room. Uh-oh, a lot of these labs were coming back not looking very good-and not just the anemia ones…

I had my infusion which went fine and then the hematology nurse practitioner came in to talk to me about my lab results. They said that ferritin levels for the average female my age was 30 and mine was 6.

Because it was so severely low, they said they gave me double the iron for my infusion and I’d have to come back next week to get another infusion.

It was also then that they informed me that my liver was not looking so good. My liver enzymes were INSANELY high and higher than normal for people on TPN (since it is usually expected to be elevated with those on TPN).

They didn’t say much else, but I went home feeling so exhausted.

I had gotten 4 hospital phone calls within 2 hours and had to re-sign my lease with my new roommate since the old one had left plus, I also had classwork from school.

Ah, the new balance of things.

On January 14th I received news from my GI team (because of the hematologists reaching out to them) that my LFTs (liver enzymes) had been steadily rising for months and they had been adjusting my lipids to try and stop them from continuing up. (-wow thanks for that heads up)

They said they wanted to talk more about it with me when I saw them on the 18th and wanted to do an ultrasound and potential liver biopsy.

I had also weaned off of Tylenol just to not make liver issues worse. The 14th was my first day entirely off pain medication and it was absolutely miserable. I was in bed unable to move and had so much nausea. I also had so much swelling and inflammation of my epigastric region and just tried to sleep.

The 14th-17th I was in such severe pain and symptoms were flaring so much that I just spent the day in bed trying to take it as best as I could. In my journals (which I use to write these) there’s such extensive notes on all of the symptoms but it’s too much to write here so just know it was a very bad time.

January 18th- GI appointment day.

Oof. I always know going into these appointments I’m going to get hit with information fast and hard so I try to have nothing else to do the rest of the day so I can go home and mentally process it (which usually means crying).

I walk in and get told, “your liver enzymes are 6 times the max limit which is very abnormal because people on TPN are usually only about 2 times the max. If we can’t figure out what’s causing it, then it means it’s the TPN and we need to remove it and put in enteral feeding.”

I responded, “wait, can I think about this? I just need some time to process this all and then at the next appointment we can talk about it.”

They said, “No, you don’t have time. This would need to be done in April by the latest.”

I said, “What? But I need time.”

And they dropped a huge bomb by saying, “It’s that or you die.”

Hope you enjoyed that cliffhanger!! Read what happens next in the story titled, “Finding the Limits,”  ;-).