Happy Holidays TPN!

Jul 16

Entering into December was a much smoother surgery recovery period because I had my best friends who also happened to be my roommates at the time and my dad there. Everyone got along so well, and it was such a wonderful, unexpected result.

My roommates and my dad had planned to go and buy a Christmas tree together and unfortunately, I was still too sick to go with them. They brought the items home, and we all decorated the tree and the apartment together.

We spent the evening laughing, singing Christmas songs together and watching the soccer match together. My dad is really into soccer, and everyone would make their dinners and then we’d all find our spots on the couch and watch the match together every night.

I am forever grateful for these friends and the fact that they made such a difficult time have such lovely and unforgettable moments. We spent so many nights all talking together for hours (with my dad- shocking right??) and it made those 7 months together feel supported.

The first week of December I was still having some issues with tremors and my hands would sometimes get stuck holding things. But the few tremors I had since being on 24hr TPN, were much more comfortable because I’d take my medication early on to try and shorten the amount of time they occurred for. My best friend would often lay beside me and would talk to comfort me and make them less frightening.

My friend would lie with me in bed all the time and during my flares would hold my hand or hug me when I was crying. They gave the absolute best support and made it feel like I wasn’t going through it alone.

I was still trying to figure out how to have my central line tubes organized because it was super long (the extension of the lumens) and the weight of it caused pain. I tried multiple different methods of clipping it up with tubie clips and catheter covers to try and help offset the weight.

I was super excited for the holiday season because I had already picked out my gifts for everyone and everyone in the apartment was throwing an early Christmas before my roommates left to spend it with their families. I absolutely love wrapping gifts so I couldn’t wait to get on that.

On December 6th I had a follow-up appointment with my primary care physician following the surgery. It went great and was a very routine visit.

I went to my old workplace to visit my boss and to pick up some nice wrapping paper with my best friend. I got home and wrapped gifts in my room (secretly so they couldn’t see their gifts). I accidentally overused my energy and my blood sugar dropped causing me to have a neck tremor attack that evening. I struggled a lot on how to gauge my energy and how to spend it.

-I will say though, my gift-wrapping skills… they looked AMAZING -

I kept running into issues where I kept overusing my energy thinking it wouldn’t cause problems later. I would walk a little bit outside to get gifts with my dad and it would cause large fatigue issues for not only that day but following days too.

On December 8th my physical therapist figured out what was causing my hands to get stuck grasping things. It was an endurance gripping issue where my thumb joint on my right hand would swell when grasping something for 10 seconds and cause the center of my palm to swell also and make me unable to release my hand.

I also had a virtual meeting that day for the show I was supposed to work in the spring at my school and I was really excited for it. Unfortunately, after the meeting I had another neck tremor attack.

On December 9th I tried out a new medication called Propranolol which was meant to help with my POTS symptoms, but it ended up making me more symptomatic and my blood pressure was really low and making me very dizzy.

On December 10th I took a regular shower for the first time with the Hickman. It was a much easier prep in terms of covering it with the shower seals my supply company had given me, but I was so scared it was going to get wet. My nurse had taught me to put a paper towel on top of the Hickman and then to put the shower seals on top so if any water happened to get in, it’d get absorbed by the paper towel. It luckily didn’t get wet, but the fear was definitely there.

December 12th my dad, my roommates and I all headed out to the Seaport market in the evening to walk around which was super fun and the first time I had been out and felt like a human being in MONTHS.

December 13th my nurse had me try out grip locks which was a medical dressing with Velcro to help hold extra tubing. It was super helpful and offset the weight of the line.

December 14th, we had my apartment’s early Christmas which was so much fun, and everyone got each other such thoughtful gifts. We played games all throughout the evening and had lots of laughs.

My best friend even got us all matching shirts of a phrase my dad often said, and we even named our group chat after it. We took some funny photos of us, and all wore the shirts the rest of the day.

December 15th, I walked for the first time to my physical therapy appointment alone!! HOORAY!! It was also a bit of a sad day because I had to say goodbye to one of my best friends who was moving out to go to a college in a different state.

Most of the days I was still having all of my usual symptoms but was able to still do other things throughout the day making it much more livable.

December 18th my dad and I started touring apartments in Boston and had to keep in mind all these new things that the apartment needed to have in order for me to be safe with my illness. I cover more of what things we looked out for in the Advice & Thoughts article titled “Apartment Hunting for the Chronically Ill”.

December 20th, I went to see my autonomic neurologist to go over the latest lab results that had come back weird. My immunoglobulin M and human growth hormone were both elevated, so we wanted to redo them to make sure it wasn’t an error. They also ordered an MRI of my cervical spine to see if that could be related to my tremors. I was also reduced down from 60mg to a 10mg Propranolol pill and was also starting a sodium retention pill to help with symptoms too.

My biweekly labs that my visiting nurse had been doing was moved to monthly which was an awesome sign! I also got my lab results that evening from the blood tests I did at the doctor’s and the human growth hormone came back fine but the immunoglobulin M was still coming back elevated.

December 21st I was feeling super sick for no identifiable reason, and I had been up most of the night from pain. I had hives from abdominal pain and swelling and was dry heaving a lot most of the day and evening.

December 23rd I was taking a shower and noticed through the shower seal stickers on my Hickman, that some of the paper towel was getting wet. I SPRINTED out and immediately started drying the area and peeling off the sticker. I had no idea how the water got in and just kept nervously HOPING that I didn’t just cause a line infection.

December 25th, Christmas!!!

I had wrapped and mailed my gifts to my mom and brother in Texas, and they had mailed their gifts to my dad and I in Boston. We set up a zoom on my living room TV and spent the day “together”. It was really nice, but my energy depleted so quickly that I had to have my dad bring me my gifts and help unwrap them as I lied down on the floor.

Overall though, it was a wonderful Christmas and through the use of technology, we truly did all feel like we were together.