THIS IS MY STORY . . .

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Sep 26, 2014

Hello friends,

I’m sorry it’s taken me so long to post.  My weeks have been filled with doctors appointments and therapy, and I’ve been needing to sleep past 2 pm some days!

I just wanted to thank all of you who purchased through my Etsy shop!  It encouraged me so much. 🙂  It has definitely helped lighten my huge medical bill pile.

Warning: this will be a long medical update!

I haven’t been tolerating j-tube feeds very well, and the gastroparesis has been causing a lot of stomach pain (all organs need energy to function….because of mito, my stomach isn’t getting enough energy, so the food I eat just sits in my stomach or moves very slowly).  I saw my GI dr. on Monday, and he set up a new plan.  He’s such a wonderful doctor!  He put in a new tube feeds order to see if a less calorically-dense formula will be better tolerated.  He also mentioned I could be dealing with Small Intestinal Bacterial Overgrowth (SIBO), but we will try this first.  Regarding the abdominal distention from the gastroparesis, he wants me to do a trial of increased j-tube feeds and less eating orally (by mouth).  That’s a big step, but hopefully it will only be short term!  I won’t be starting this yet until I get the new formula and until I can switch feeding pumps.  My current pump is quite heavy and makes it difficult to carry (because of the muscle weakness) so his staff is contacting other companies for a lighter one.

Unfortunately, my neurogenic bladder has been getting worse, and my GI surgeon explained how my kidneys could die if I don’t get this treated.  Wasn’t expecting her to say that!  She put in an urgent referral for me to see a neuro-urologist at OHSU.  That appointment’s still a month away because she only works part-time and this specific dr. is the one I need to see.

I had a follow-up with my PCP today, and she’s referring me to a cardiologist at OHSU who specializes in arrhythmia because I’ve been dealing with high heart rates, excessive night sweating, and heart fluttering.  That’s how bad mito is. 🙁  It basically affects every body system!

Last week was Mitochondrial Disease Awareness 2014, and I didn’t get a chance to blog, so you can consider this my awareness post. 🙂

P.S. The mito conference in Seattle two weeks ago was amazing!!  I’m so thankful for all the specialists studying this complex and extremely challenging group of diseases.  My mito specialist was there as well, and I was able to say hi to him.  He told me that I’m a conundrum (medically)…that’s never good news.. :/  I asked him if he remembers me from June (he sees a ton of patients), and he said, “Of course I remember you!” 🙂

A neurologist who trained under an excellent mito specialist at Seattle Children’s is now practicing at Legacy Emanuel’s Randall Children’s Hospital in Portland, and she’s trying to get approval to open a mito clinic.  She also hopes to see older kids and adults as well!  She took my contact info, and I’m to call her office about all this within 6 months.  Oh that’d be so wonderful to have a local mito specialist! 🙂  This would technically be the first mitochondrial disease clinic in Oregon!

A thick binder full of notes and slides they gave to each attendee!
In front of the Bell Harbor Pier and conference center 🙂
This is how close the conference center is to the water!
Post written byKerissa

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