Skip to main content

Surviving the Semester

My Lungs Got a Close Up and I Got to Choose the Gown Color

Every semester I seem to be muddling through at the end. In fact this trend pre-dates my college career. December of senior year I was diagnosed with Uveitis. Two days after graduation I had hip surgery, meaning the two weeks before that I was medication less, not pretty. Then in college I was diagnosed with Celiac about 5 days before my first set of finals. Spring of last year the week before finals was when erythromycin stopped working and my downward spiral towards the feeding tube began. This past fall semester my POTS was so bad during finals I thought I was going to pass out during my math final, I lasted until 2 hours after it. In the ER I found out I at least got a 90% on the final and the doctor high fived me. 

So in true Joan fashion something had to go wrong in the past two weeks of my life and sure enough something did. Unlike in the past I was much more blindsided by it. With past finals weeks the health problems that have come up were not new, this go around was different though. 

Being in a kindergarten placement not so shockingly there are a lot of germs going around. In fact I am suprised with all my regular interactions with small children I have stayed pretty germ free this year. Well about two months ago all my peers in my placement got a cold, me included. Within a week or two everyone recovered without issue, except me. I continued to have a cough but it would improve throughout the day, so I didn't pay much attention. A little under a month ago it started getting worse and I was struggling to get my usual liter+ a day of fluids in, so I emailed my doctor. We decided if it did not start improving in a few days I should come in. I went in and was prescribed albuterol. All that did was make my heart rate skyrocket, the next day I was a million times worse, gasping for air. It was scary, really scary. 

Writing papers and creating unit plans in between coughing fits leaving me gasping for air was probably one of the roughest things I have been through during college yet. What was worse was during every class and final for the last two weeks all my classmates (I had every class with the same students) and professors asked if I was okay. Honestly I wasn't okay, I was struggling to breath and had multiple pre-syncope episodes, probably from the lack of oxygen. When it came down to it there was nothing they could do to help me so I did not want to worry anyone. I went to a doctor, in fact I went to see doctor's at my GP's office three times in a little over a week.
Finally in time for my last final the Flovent (steroid inhaler) started to kick in after maxing out the dose.Next week I have a follow up and will probably have to go on a lower dose but I am trying not to worry about that. I can not get in to see a pulmonologist till June(and if I waited for an attending it would have been July. So until then I am seeing an ENT and going for Pulmonary Function Test. Never a dull moment. 

On the brightside, I did not pass out during any of my finals. I handed in all my papers and unit plans. I even submitted my application to the accelerated master's program for special education today. I am done with school for the next few months, I have survived yet another semester.

Comments

Popular posts from this blog

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.


Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment.

I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal.

I was left with the advise to call me rheumy Monda…

Preparing to Fly with Complex Medical Issues

One of the most stressful things to do is travelling, now add some needles, medical liquids, and a suppressed immune system to that and flying goes from stressful to down right scary. As I prepare to fly to the rare patient advocacy summit taking place this week in California I  figured I would share what I have found works the best for me when traveling.

Before my first flight with a feeding tube I looked up the TSA policies on medical liquids. Basically as long as you notify them while going through security and separate them from the rest of your things you should be allowed to take them through without issue. No doctor's note required. Same goes for needles and syringes and inject-able medications. You may want to print this policy out or have easy access to it on your phone in case you encounter any issues although I have yet to have a problem.

A few days before your flight call up TSA cares. They will set you up with a TSA specialist to help you through security. This is th…