THIS IS MY STORY . . .

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Sep 19, 2013

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.

I know I shared this picture before, but I love it!

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!! 🙂

Post written byKerissa

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