I received an email response from Dr. Bax. She said that the experience they've had with the treatment is that results usually don't show until at least 10 months in. I expected this, but I only set my campaign goal for one month. It's kind of discouraging, but then again if Dr. Bax will still have me, I could still contribute to the research being done on my disease and on mitochondrial disease in general. Not to mention I'll get to see London. So I guess I just have to keep myself focused and determined.
I sent her my doctor's contact information, and she said she would get in touch with him and discuss my case. My fingers are crossed that everything goes well and we hear from her again soon.
A recent change we're trying now is continuous TPN. That's me being hooked up for 24 hours. All day every day. We are trying this because it seemed like every time I'd unhook, I'd experience the diarrhea I've been trying so hard to control, and this never happened when I was hooked up. I talked to my nurses and my doctor, and they all told me there's no reason I shouldn't give it a shot, so here we are. Of course, my freedom is gone now. I will no longer be able to take a semi-free bath (laying in the tub, unhooked but keeping my port dry). Now I will have to stay hooked up and keep my line out of the water and sacrifice a lot of free movement. And of course now I will be sleeping with my TPN again. That can get pretty uncomfortable and my bladder tends to reach that exploding point because of it. Wish me luck!
I just wanted to share an email that was sent to me by a nice guy who graduated my high school 3 years before me, and my response: