My winter break thus far has been an interesting one to say the least. The Friday before my break was supposed to start, my new movement disorder specialist called and talked to my parents and I for no less than 45 minutes. (Yes, you read that right. The doctor himself called and talked to us for that long!) He told me that two blood tests that I had done earlier in the week came back. The Ganglionic ABR (which is basically an autoimmune panel that I don’t fully understand) came back negative, but the GAD (Glutamic Acid Decarboxylase) 65 antibodies came back moderately high. Most people don’t have detectable levels of GAD 65 in their blood. It is associated with type 1 diabetes and thyroiditis, both conditions of which I don’t have a history.
Dr. H suggested that after my EMG and QSART on Tuesday, December 15, that I be admitted for a round of steroid treatments. I told him that I had a psychology final exam on Wednesday morning at 8 AM. We were able to reach a compromise and I would come in to be admitted following my last final exam. The weekend flew by. I studied my butt off for the finals, wrote a few blog posts, and snuck a few Christmas movies off of Netflix in here and there. My week continued as planned. A busy taekwondo schedule, Christmas movies, and more studying for finals. When Wednesday morning finally came and I wheeled out of that final, I felt so liberated.
However, I was still facing the fear of the unknown. I had never been admitted to an adult hospital and my parents couldn’t stay with me. I was afraid that the nurses would be nasty, that the doctors would not know my medical history, and that the physical therapists would push me too hard. With the help of some amazing nurses and neurologists, and I made it through my high dose steroid treatment in the hospital. Insurance approved a home health care nurse to come and take care of me during 1.5 hour high dose steroid treatments. That was absolutely wonderful because that meant that I would be able to receive treatments in the comfort of my living room recliner.
During my stay in the hospital, I had four special people come to visit me. My friend Holly from high school came and we spent over an hour just chatting it up. Then, Thursday, my friend from my American Sign Language class days, Rebecca also came to visit as she was making rounds through Oakland. Later, Thursday afternoon, the co-president of the Pitt Dance Marathon, Tori, came up to visit and we had the chance to chance up before I went down to get my PICC line (which is another part of the story!) She even brought me the cutest pink and purple Beanie Boo, which was much appreciated! Another member of Pitt Dance Marathon, Jake, also came to visit me, but I will continue that story in a little bit.
I also underwent a lumbar puncture, which is a procedure in which they stick a needle in your back to collect cerebrospinal fluid (CSF) from around the brain and the spinal cord. The procedure team had a hard time getting enough CSF to drain from my spinal column, so the procedure took twice as long as it should have for the average person. The CSF is an extremely important component of my testing for stiff person syndrome, because if the antibodies are in the CSF, that makes it even more likely that I have the disease.
Okay, so back to the home steroid infusions. Because my veins are absolutely shot from being jabbed a million times and the medications have scarred the insides, I require a PICC line for long term access. After going back and forth with the doctors, I finally got them to agree to place a PICC line. The procedure itself really isn’t a big deal, but the site has to be kept clean and dry. After an IV nurse ultrasounded my veins, she put an order in for interventional radiology to perform the procedure.
Because of prior poor reactions to unsedated PICC line placements. I was told that I would be given Ativan and my ketamine troche before the procedure. The radiology PA refused to sedate me, even despite my history and warnings. He stated loudly, “I have done 25,000 of these and never lost a patient. I signed the consent and went on with it. Clearly, my pleas were falling on deaf ears.
So they did the procedures, no problem. They started taping up my arm and suddenly… My world went dark. I just hope to God that that cocky radiology PA listens to his patient next time he has a patient try to be proactive and warn him of past medical history.
This is all retold to me at this point. I went completely unresponsive with a Glasgow Coma Score of 2 (15 is normal). While I was out, they conditioned me and called the rapid response team to intubate me and they sent me for a CT scan. Finally, they sent me to the Neurotrauma ICU. Once in the ICU, I went in and out of it, spending much of the night on at least supplemental oxygen. I had 2 EEGs performed, after one showed a “slight” abnormality that ended up being nothing. I woke up to my mom and brother at my bedside. We took a few goofy pictures of me intubated and I kept trying to tell them that I wanted the tube out, but of course, I couldn’t talk. They also had me in restraints so I wouldn’t pull the tube out like my grandmother. That’s another long story for another day.
The night was rough. I had arterial blood gases drawn, felt nauseous, and received regular heparin shots. When morning dawned, things seemed to get better. During rounds, I found out that my QSART results were abnormal (as expected) and that the regular proteins in my CSF were normal. We also discovered that my thyroid antibodies were sky high.
I received a referral to an autonomic specialist at the Cleveland Clinic and a sleep disorder neurologist. The plan was to move me back to a regular floor, so they could discharge me. But before I could be discharged “cousin” Jake visited. Since family is only allowed in the ICU, he had to play my cousin, but it was kind of funny and great to see him. After I finished my round of IV steroids, I was sent on my way.
The next two days I would have a wonderful home care nurse come for about an a hour and a half to give me my steroids. On the second day, she pulled my PICC line so that I could go back to taekwondo for the week!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!