Part 2- the next part of my journey (Mito Awareness Day 4)
Exactly one year ago, I was readmitted to the hospital for 8 long days due to worsening leg weakness. It was horrible. My left leg felt dead and oh so heavy. Once again, I had to be seen in the ER for the 3rd time in only 5 days.
I became so used to how things work in the ER. I was examined by medical students, residents, nurses, and attending physicians. Poked and prodded a million times, I had tubes and tubes of blood drawn to check my erythrocyte sedimentation rate (ESR), complete blood count (CBC), c-reactive protein (CRP), INR, activated partial thromboplastin time (APTT), anti-nuclear antibodies (ANA), thyroid stimulating hormone (TSH), creatine kinase (CK), complete metabolic set, and differential.
I was tested for Lyme Disease, Lupus, Lambert-Eaton Syndrome, Loeyes-Dietz Syndrome, and Ehlers-Danlos Syndrome (Type IV-vascular). All those came back negative….
By that time, my Acetylcholine receptor binding antibodies blood test to check for Myasthenia Gravis was completed, and to my great surprise, I tested slightly positive by one-tenth of a point. One-tenth.
Doctors still weren’t sure if I had MG because the lab in Portland they sent the blood to often gave false positives. So the neurology team sent a fresh blood specimen to the Mayo Clinic. Unfortunately, doctors told us results wouldn’t be finished for 4 weeks.
Still waiting in the ER, I looked out my door and down the hall where I saw two, tall gentlemen walking my way! I couldn’t believe my eyes! My pastor, an elder, and two staff members from my church came to visit me, and it did my spirit good to see them!
My pastor gave me this book filled with God’s promises, and he shared this verse with me: “Fear not, little flock, for it is your Father’s good pleasure to give you the kingdom” (Luke 12:32). Right then, I felt such peace and knew that, with His help, I could take this on!
That night, I got admitted to 5A. The hospital was full that day, so I had to share a room with another person. After I got settled in, a respiratory therapist stopped by. The neuro team put in an order to have my lung function checked in case I did have Myasthenia Gravis. I had to breath in as hard as I could with this contraption and push a button at the same time. And guess what, I passed with flying colors.
My half of the hospital room was so cramped. It was nothing like my beautiful spacious room on 10K. I was so tired, so I said goodnight to my family and tried sleeping. I would have had a wonderful night’s sleep if it wasn’t for the lady in the bed next to me. I heard she had amputated toes and a recurring wound infection. For some reason that night, she had nightmares, so every 15 minutes, she screamed and yelled out loud and talked in her sleep. All throughout the night. I didn’t get much sleep as you can imagine. I shed a few tears, homesick, a little upset with all that had gone on, and not liking that unfamiliar place. I was so grateful I got my own room the next day!
Every single day in the hospital was like deja vu all over again. Bright and early in the six o’ clock hour, a phlebotomist knocked loudly on my door, flipped on blinding lights, and came to draw five more tubes of blood. I became so used to everything—I even started trying to sleep through the blood draws and new IVs.
One of the best things about this hospital stay was meeting Brian, a medical student. Not only did he answer all my questions and explain what could be going on, he was like a big brother to me. He tried to visit me every day, even after finishing a difficult final for his neurology rotation. I found out then that he goes to the same church as my brother! I’ve been blessed to still keep in touch with him and his wife. Brian graduated from med school back in June! So happy for him.
Next up: Part 3- the time I had a 2 1/2 hour EMG/NCV study and my first spinal tap..
P.S. It’s been two weeks, and I still haven’t gotten my sleep study results…
The doctor hasn’t started interpreting the data yet, so the receptionist is going to send him a message.. In other news, next week I will very possibly get the mito exome sequencing results!!
