Is This the Routine?
I had been told by my nurse early on to invest in a PICC sleeve since I was likely going to be on TPN for a long time. I had ordered only 2 pairs from a company called MightyWell which really helped with all of the itchiness I was having from the sleeves the hospital would send.
On August 30th, I had my first appointment with my home physical therapist. It was a pretty slow movement day because that morning I had vomited 3 times and wasn’t feeling great.
That day I also had my dressing change and watching the change in the mirror worked! Since I could see what was happening, I was no longer nauseous and getting vasovagal syncope.
My roommate headed off to school on their first day of sophomore semester. My dad and I threw a little celebration to brighten the day. It was tough to see all of my peers jump back into school while I was stuck in bed unable to even do a coloring book without throwing up.
As the days followed, I continued to have flares, esophagus pain, vomiting and crying.
On September 2nd, I had a neurologist appointment to get a referral to be tested for Postural Orthostatic Tachycardia Syndrome (POTS). I was sent to be tested for this since during my inpatient stay, even with adequate fluid repletion, my heart rate was consistently tachycardic and would get worse with any sort of movement. Sometimes when I would stand my blood pressure would drop as my heart rate would rise, which gave me lightheadedness.
My dad wheeled me to my appointment, and we explained to my neurologist why we were there. They said they didn’t think anything was wrong with my heart and that there wasn’t a reason to test for POTS. It took convincing but we finally got them to check my orthostatics. When they did, they immediately said I should be tested for POTS and referred to a specialist. The only specialist in the Northeast had a very long waiting list so we got an appointment with their fellow for November.
On September 3rd I had my last home physical therapy appointment since I wanted to transition back to the physical therapist, I already had for over a year.
My mom also flew into town for a few days, so I got to see her while I was in bed.
Since I was released from being an inpatient, the times that my TPN wasn’t running, got significantly worse. While I had been in the hospital, the TPN would run 24 hours. I was still on the 20-hour time period but my body would shake and I would feel extremely weak and often get migraines when I wasn’t connected.
I called my dietician and was told I was going to be sent a glucometer to check my blood sugar when I disconnected.
September 8th, I had my first day back at physical therapy and it was weird to go there with my family members (since prior to June I would’ve never thought they’d meet each other). It was quite shocking for me to be back to a place so familiar in such a bad condition. I was really glad to see everyone and looked forward to going every week-just to see them alone (with the added bonus of exercise).
A typical day for me during this time involved me lying in bed all day except for when I was using the restroom or going to an appointment. I was often flaring which would get me quite tired, but I didn’t sleep very much (especially since I was often woken up or kept up from flares). My dad would work remotely while I was asleep and then would sit and talk or watch tv with me at my bedside when I was awake. My roommate would also watch tv in my bed and bring pets (of friends) so I could have something else to entertain me.
Unfortunately, just as my body was beginning to get into the routine of things, another flare sent me to the hospital, rocking the boat yet again.
Read what happens in the story titled, “The Line Infection Scare.”