THIS IS MY STORY . . .

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Nov 21, 2013

Hey friends!

Just an update for you—this week has been crazy busy!!  I have 5 appointments this week alone!  Hopefully things will get less hectic next year. 😉

Monday, November 18th—  I had to go through a most unpleasant GI test that involved water-soluble contrast and fluoroscopy.  I’m traumatized for life! 😛  And I hope I never have to repeat it again..

Yesterday (Nov. 19th)—  I had physical therapy, and I also saw my pain specialist for a follow-up.  You want to hear something awesome?  Dr. S told me that there’s a company out there that now makes MRI-compatible spinal cord stimulators!  For those who don’t know, I had a SCS implanted back in 2011 for CRPS nerve pain in my feet.  But last year, I had to get it explanted because of the need for brain/spinal cord MRIs.  I miss my stimulator terribly!  So Dr. S said he’s willing to place another SCS in my back once this mitochondrial disease work-up is complete! 🙂

Nov. 21st—  Tomorrow I have to get an abdominal ultrasound which is the 2nd GI test that the Motility medical director at Cincinnati Children’s requested.

Nov. 22nd—  Friday I have a gastric emptying scan scheduled in Nuclear Medicine which will take 3-4 hours..  This is the 3rd GI test that Dr. K wants.

Nov. 25th—  A barium Upper GI study is scheduled on this Monday.  For the test, I have to drink about a cup and a half of barium..

Nov. 27th—  I see my Sleep Medicine dr. for a follow-up because I started using continuous positive airway pressure (CPAP) last week!

November 28th—  My extended family is coming over for Thanksgiving at my family’s house.

December 1st—  My parents and I leave for Ohio!

Dec. 2nd—  first appt. with one of the GI motility drs.

Dec. 3rd—  I’ll be seeing Pulmonary Medicine.  Immediately after that appointment, I’m getting admitted to the hospital.  Anesthesia will come to see me in my hospital room, and I’ll be having a nasogastric tube inserted to prepare for the GI procedures the next day.

Dec. 4th—  will be taken to the OR where Dr. K will do several extensive GI procedures, including taking biopsies and checking for anything abnormal like inflammation, ulcers, etc.

Dec. 5th—  Dr. K will start manometry testing in my hospital room.

Dec. 6th—  Depending on the above GI test results, Dr. K may perform further studies like an esophageal manometry or PH-impedance probe test..

Dec. 7th—  I have a tentative 2nd sleep study scheduled Saturday evening if the Pulmonary Medicine docs want more sleep info..

Dec. 9th—  On Monday I’ll be seeing Cardiology and Orthopaedics.

Dec. 11th—  I have an appt. with the mitochondrial disease specialist and genetic counselor in the Human Genetics dept.  We’ll discuss my nuclear mitochondrial exome sequencing results.  Neurology will see me as well possibly after this appt. or on Thursday/Friday.

Dec. 14th—  The plan is to head home! 🙂

The coordinator in GI told me that this schedule is bound to change, so we just need to be prepared to be flexible..

Praying you all have a blessed Thanksgiving!!

P.S.  Next week I’ll be taking a blogging break, but don’t go away! 😉  Lord willing, I’ll get back to the blogging world in Ohio!

Post written byKerissa

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