My non existant readers, I have some good news. I finally have an answer.
If you have read my posts so far, you probably know of my frustrations figuring out what on earth was going on in my body. As I mentioned in my last post, I was recently seen back at Cincinatti Childrens Hospital Medical Center. It was a long visit, but productive. I had scopes, a GJ tube change, muscle biopsy, intestinal imaging, PICC line placement, and the start of TPN (total parenteral nutrition, for those of you lucky enough not to know… IV nutrition). My scope showed active eos (which was entirely expected), imaging was normal (ruling out a mechanical reason why I was not tolerating J feeds), and I finally have the results back from the muscle biopsy.
Background. A muscle biopsy was ordered to test me for mitochondrial deficiencies. Dr. P is starting to see a trend of eos patients also having mito, or mitochondrial disease. My education from this week tells me that mitochondrial deficiencies point to mitochondrial disease, but most do not consider it a true diagnosis until gene testing is performed, along with ruling out any other causes for the deficiencies. Well, the muscle biopsy showed I am definitely deficient. They test by the different complexes within the mitochondria, each complex a different step in the process of processing and making energy. On the upside, my complex II and III looked perfect. On the down side, complex I was operating at 4% of normal, and complex IV was at 6%. Because I am not on any meds that could contribute, and it appears the test was accurate, Dr. P is assuming mito. I will find out more when I see him over spring break, and am guessing Ill be adding some more specialists to my team.
Because of this, and the fact that I am still symptomatic on just about nothing (food wise), Dr. P also decided to delay the reintroduction of enteral (tube) feeds, and as per the original discussions about it, I will be getting a central line placed. After talking with the nurse, we decided that a tunneled line would be best, given its use for the meanwhile will be TPN. Whats super cool about this, though, is that Dr. P hand picked my surgeon because shes a climber herself! So she will be picking a spot that will be optimal for me to continue climbing. The down side (there seem to be a lot of these this post) is that Ill be spending another spring break getting surgery. But hopefully Ill be able to head down to Red River Gorge afterwards to visit with some awesome friends.
The plan of action from there, according to my mom’s recount of her conversation with Dr. P is to manage my symptoms and keep me doing what I want to be doing for as long as possible. Theres just no gauruntee, timeline, expectation on how long that will be. Hopefully this is a battle I will win.
I havent taken much time thinking about what all this entails yet. Its still just kind of hovering in my peripherals… Maybe tomorrow Ill be ready.
“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’ No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” – Dalia Lama XIV