Tests and More Tests...

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! :P  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!

Just HAD to share! :)

Wonderful news---my Cincinnati trip this December is a go!!  Thanks be to God, the GI motility disorders team has fit me in on their schedule!  I'm SO happy. =)  Originally, this was thought to be impossible because they are booked out till mid-January and they could only see me if my GI dr. here did a hospital-to-hospital transfer.  But, 4 days ago I spent an unexpected weekend in the ER for severe esophagus pain and swallowing issues, and I lost another 2 pounds....  So my GI specialist here in Portland spoke to the Motility disorders medical director at Cincinnati Children's regarding these worsening issues, and by the grace of God, Dr. K is squeezing me in on his schedule, and he already booked the OR for all the testing he wants to do.  Before I leave for Ohio, Dr. K wants me to have 4 or so additional GI tests done here before Thanksgiving.  This is gonna be a super busy 2 and a 1/2 weeks!!

This is the plan:

On Dec. 3, I first see Pulmonary Medicine.  After that appointment is the consult with Anesthesia (for the GI procedures), and then I see Neurology.

Wednesday through Friday (and possibly Saturday), Dr. K will do his extensive GI procedures, and I think they're admitting me to the hospital for all of this.

Saturday evening (Dec. 7th) is my tentative 2nd sleep study.  Last night, I started CPAP for my sleep-disordered breathing, and if I don't notice any benefit with CPAP, then the doctors at CCHMC will have me try BiPAP at this 2nd sleep study.

On Monday the 9th, I see Cardiology (consult for dysautonomia), and afterwards, I have an Orthopaedics appt. with the Spine Center for the chronic spine pain I've been dealing with.

Wednesday is my appointment with Human Genetics---I'll be seeing their genetic counselor and mitochondrial disease specialist.

Thursday through Friday is left blank in case any of these doctors want additional testing..

And on Saturday, the plan is to head home! :)

Thanking the Lord for His goodness,

kerissa

This Passing Tide...

Yesterday, I saw my physical medicine dr. for a 4-week follow-up on my spine pain.  Sadly, physical therapy hasn't been helping, and Dr. C thinks this chronic spine pain is related to my muscle weakness (from the underlying neuromuscular/mitochondrial issue).  So he referred me to the Spine Center at Cincinnati Children's for a second opinion when I'm there in December.

Lately, I've also been having issues with swallowing/choking (in addition to weak chewing muscles), so Dr. C put in an order for speech language pathology here and possibly a swallow study.  He wants to speak with my geneticist in Ohio about this new problem in case I need to see Speech there, too.

Regarding my GI system, I've lost 4 pounds in two weeks..  If this keeps continuing, I'm going to hit 78 lbs. very soon!  I did get referred to GI at CCHMC, and the team is currently reviewing my records/referral.

Yesterday, I had a horribly long episode of nystagmus, and it made me want to pop my eyeballs out to stop them from oscillating uncontrollably. :(  I really hope Neurology at CCHMC will be able to help this issue..

To make matters worse, I've been having cognitive problems---I often have trouble recalling what verb tense to use when I'm emailing or texting my friends, and I'm forgetting certain details. :(  This is related to the CHAT gene mutation that was found in the mito-exome.

As you can see, I'm not doing that well.  But I am reminded that I can do all things through Christ who strengthens me! :)  Thank you, Lord, that I have You to lean on!

I've been super busy getting all these appointments lined up in Ohio!  It now looks like we'll be there for about 2 weeks (and longer if necessary).  My parents and I leave for Ohio in only 3 1/2ish weeks..!

Many blessings on your week,

kerissa

 "These sufferings, this passing tide
under Your wings I will abide,
and every enemy shall flee;
You are my hope and victory."

~lyrics to Praise the Father, Praise the Son