Dad and I woke up plenty early in order to pack up our things and head to the infusion center to be on time for my 7:30 am appointment. Our Uber got us there with time to spare and after a quick meeting with the nurse practitioner to check on vitals and discuss any last minute questions, I headed off to the infusion room. My very sweet nurse, Pandora, got an IV started and dad went off in search of some decent coffee while I began my infusion of Benadryl, Compazine, Zofran, DHE, Magnisium, and Toradol. All of these are medications I’ve had in the past but this time they were given together and at different rates than past experiences.
The Benadryl had me pretty worn out for a good while so dad was in and out of the infusion room while I slept. He left around 1 pm to head for the airport to catch his flight back home. I finished my infusions around 3 pm and I caught my own Uber to the hotel room I’d be staying in for the next few nights. Unfortunately when I arrived I was informed that the elevators were not working and were not expected to be functioning again for a few weeks. Not the most welcome news for someone who just spent hours having their body essentially assaulted with medications and who on a good day deals with intense fatigue and dysautonomia. Oh, my room was also on the third floor.
I managed to lug my bag and myself up the stairs and generated some laughs from the two men behind me because this healthy looking 24 year old woman was completely out of breath and feeling pretty faint after a short trip up the stairs but I was really too tired to care. I made it to the room and pretty much passed out for the rest of the evening. Dad made it home safely and I missed just enough texts and phone calls to accidentally cause concern. Oops!
I woke up on day four feeling worn out from the day before but thankfully more rested than when I got to the hotel. I got myself dressed and downstairs and called my ride for the morning. My day was much like the one before with a check in with the NP, comments on my low blood pressure, and then off to the infusion room. My nurse took a couple of tries getting my IV started which didn’t surprise me since DHE is a vasoconstrictor, which makes finding a good vein more difficult.
I opted to skip the Benadryl since I didn’t like being quite that groggy while having to stay awake and alert enough to safely transport myself between the office and hotel. The NP said that would be fine unless I started having side effects that required it. Thankfully that wasn’t an issue.
However, after this day of infusions, I did experience a really weird side effect of my neck muscles contracting uncontrollably. That meant that my head was stuck in a position like I was cradling a phone between my ear and shoulder and was really uncomfortable. I tried stretching but it didn’t really help. Thankfully a night of rest did do the trick and the following morning was much better in that regard.
I talked to mom from my hotel room and she caught me up on how her Niagara Falls trip had been going. I updated her on my surprise of just how much more difficult this all was than I expected. We both agreed that we were pretty excited to be reunited the following day! I fell in and out of sleep starting fairly early in the evening and prepared to do it all again in the morning!