Feb 5, 2016

Hey guys,

Just wanted to post a short update for you.  Thank you for continuing to pray for me. 🙂

My magnesium dropped AGAIN even though I’m receiving extra magnesium in my daily IV fluids!  Something’s clearly not right. 🙁  Yesterday, I was given an additional 250 ml bolus of magnesium, so I was on IV fluids for 6 whole hours.  My GI team referred me to OHSU nephrology to make sure I’m not losing Mg through my kidneys..  The clinic already got back, and I’m blessed to be able to see a Portland Monthly “Top Doctor” in nephrology.  My appointment with her is on the 29th.

Picture #2: what it’s like to live with mitochondrial disease….I receive the big clear bag of TPN every other day, the white bag of TPN with lipids on alternating days, and the little IV bag of fluids every day….I have to flush my central line with saline (syringes) before and after every infusion.  All the other supplies in the picture are what’s needed every day!

This month is crazy busy.  I have 4 appointments next week (physical therapy, kidney/bladder ultrasound, neuro-ophthalmology, etc), and then my parents and I leave for San Diego on Monday the 15th.  The follow-up with my mitochondrial disease specialist is on the 16th.  We come home on the 18th.

In addition, my parents and I will be driving up to Seattle on the 21st to see my pain dr. who moved from OHSU to the University of Washington Medical Center.  This was planned last minute.  The CRPS nerve pain has been horrendous, and my local pain dr. is so booked out.  It’s so hard to deal with this CRPS flare-up day in and day out. 🙁  Nothing is helping, and chronic pain is so different from acute pain in that regular pain meds don’t help.

I can’t wait to see my pain dr. again….it’s been more than a year!  I need to update him on all that’s happened, and I also hope to discuss spinal cord stimulation again (for those who don’t know, I had an SCS system implanted in my back in 2011 for the CRPS, and it helped the pain tremendously….I had to have it removed in 2012 because I needed MRIs….after waiting more than 3 years since then, there are now MRI-compatible SCS implants!). 🙂

After we return from Seattle, I have my GI follow-up that Friday.  I’m glad he’ll be back….he’s been gone (out of the country) way too long!

And then the following week, I see Nephrology, Pulmonology, and Hematology….too many appointments! 🙁

The rest of this month, I won’t be blogging.  You know why. 😉  I’ll be sure to post some short updates on facebook.  And I will return here next month!

Until then!

*Oh man, that was supposed to be a “short” update… 😀 *


Post written byKerissa

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