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!
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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:
Hi Melissa,
My name is Matt. I was an Armuchee graduate in 2007. I read your story today online via Rome News Tribune and then the full story on the Gazette. My family doesn't have much money to give, but I wanted to send you a personal message of encouragement. I was very moved by your story in the way that people responded but also your courage and willgness to fight for your life. I don't know if you believe in God or not, but I can tell you that he probably was smiling at the response that you received. I often question why things like this happen to people because it really seems like it makes no sense or that it's meaningless--but that's just the thing, it isn't meaningless. The way people came to your side to provide you with the means to fight for your life shows that there is hope for humanity still, and that people still value life over death. To me, that's proof of God... just know that your story has moved my life in that way. I'll pray for you and your husband throughout this fight. Keep going as strong and as hard as you can--God uses the weak to show his strength. And while you're in London, try to eat something English--I had a friend that went there and said the Fish and Chips are pretty astounding.
"Cheers"
Matt Palopoli
P.S. I'll be sharing your story!
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Hi, Matt
I'm sorry it's taken me forever and a day to get back to you. My mind has been all over the place this week. It's all very overwhelming and on top of having a cold and my symptoms, it's been hard keeping track of everything going on. I wanted to respond to you, though, so I saved your email. I remember you from high school, though I was just a sophomore when you graduated, but I do remember you. I really appreciate your kind words, and I am happy to say that I do believe in God. I've had a lot of problems with my faith throughout my life, especially in the last 5 years, and until recently I was very doubtful about him with everything I was going through. Now that I'm getting closer and closer to dying, though, it seems he's making himself more available to me and my faith has grown a lot this year. Part of it is like you mentioned, the response I have gotten in such a short amount of time from everyone trying to help me in my time of need. It restores my faith in humanity when I thought that people just didn't care about each other anymore. It's a great feeling. But this has also made me come to accept the fact that this isn't the end of my life. It's going to be a new beginning, because whatever comes after this life, it will be so much better than anyone can imagine and I truly believe it. I feel very humbled and blessed to be able to experience all of this, even if it comes with nausea, vomiting, and pain you wouldn't believe. I have met people who I would never meet otherwise, and when I'm gone I know that I will be leaving a legacy that will continue to touch people without me. And even if the treatment in London doesn't do much for me, I can say that I tried, and my statistics will help will more mitochondrial research. And I mean, London. Come on. I am dying to see Europe!!! Maybe I can head over and fulfill my dream of seeing Italy and Paris! :-)
Thank you for emailing me, Matt.
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