Long overdue update

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!

Sad news

Hi everyone,

Thank you so much for your prayers and support!  It means a lot to me.  I am doing a little better than before. :)  After I wrote my previous post, I only had to go back to the ER one more time (that was a total of 3 trips to the ER and 1 urgent care visit in less than 2 weeks....).  The GI dysmotility got pretty bad, and I was in a lot of pain.  So Surgery told me to go to the ER to check for obstruction.  Thankfully, that was not the case, but the x-ray results did show that I was very backed up. :/  The doctors ordered more fluids, blood work, and IV meds, and I was able to go home with an updated medication regimen about 6 hours later!

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Today, I saw my pain dr. because the CRPS burning pain has been so very severe in my hands. :(  I have to hold an ice pack at night because my hands over-heat and burn like crazy!  They've been flaring up because I had so many IVs and blood draws the last several weeks, and needles always make things worse.  My pain dr. ordered an IV lidocaine drip combined with ketamine and magnesium which will be done on Oct. 8th.  So far away because he's booked out.. :/  Hopefully there will be a cancellation soon!

To my great sadness, Dr. S told me that he is leaving OHSU the end of October and moving to Washington to practice at the University of Washington Medical Center beginning in December.  I wasn't expecting this at all. :'(  I'm so very sad!!  It's not because he doesn't like OHSU anymore...he's been here for 18 years.  And he likes change, so he made the decision a month ago.

He told me at least he's not moving to Cincinnati or San Diego.  Washington is just a few hours away, and I'm not completely heartbroken because I get to see him up there. :)  But this news is still hard...change is hard.  I've been seeing him at OHSU for almost 4 years!  Out of all my doctors, he's my favorite.

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The next several weeks, I have many big follow-ups with Neurology, Surgery, GI, and Internal Medicine.  So I may not be able to update much.

Also, next Friday and Saturday, my parents, sis, and I get to attend a two-day mitochondrial biology conference presented by Seattle Children's Research Institute!!  Many mito specialists from across the US will be coming to speak to families and doctors.  I'm so excited!  The second day is a family day where you can meet other families with mito. :)

P.S. My etsy shop is open!  Check it out. :)  5% of profits will go towards MitoAction and mitochondrial disease research.  And the rest will be for all the increasing medical bills I have!