Nerves.

I got my dressing changed for the first time today. It wasn't a big deal, actually. I was expecting a lot more pain, but the dressing doesn't even itch too bad. So that was a huge relief.

Tomorrow morning we leave for New York, and I haven't even started packing yet. Not that I need to pack a lot, mostly paper work and medical supplies. We'll only be there for two and a half days, so I don't need a lot of clothes. I don't know if I'm more excited or nervous about the trip. I've never been to a city bigger than Atlanta before, and lord knows I have this god awful country bumpkin accent, haha. But I've heard that New Yorkers are actually very friendly to tourists, and I hope that's true. Coloradans have been pretty friendly, but these people are more like a rural friendly, especially in the springs. I don't know how to explain that.

Anyway. I think I'm more nervous about meeting Dr. Hirano. Yeah, that's definitely it. Excited about seeing New York, nervous about the reason I'm going there... Oh, bother.

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My Story

Six years ago I wouldn't have imagined being diagnosed with a mitochondrial disease. Up until 2007 I had a normal life. I rarely got colds, or infections. I was full of life and energy. And then the symptoms started.
I started having intense abdominal pain in the middle of night and begged my parents to take me to the ER. After many x-rays and bowel studies, they told me I had an ovarian cyst that had ruptured... Wrong. Then they told me I had PID, pelvic inflammatory disease, which caught me off guard completely. Also wrong. No one had any idea what was going on. A year later, the pain came back, and I ended up having a small bowel resection and was told I had diverticulitis. They told me I would have to change my diet and try not to perforate the diverticuli again. Like I could really control it.

Since then, I have had 3 small bowel resections, and I've had 4 or 5 hospital stays. I've lost count. My most recent surgery was in September 2012, where they told me I probably wouldn't survive another bowel resection. That's always nice to hear, isn't it?

Let me rewind a bit, and get to the mito part of all this. In June/July 2012, my husband and I took a road trip to Georgia to see our family and friends for a few weeks. During that time, over night, I suddenly lost my hearing. I thought maybe I had an ear infection or I had water in my ears from our camping weekend, and maybe it would go away. I tried flushing my eardrums, I tried blowing it out, nothing worked. So we went to the ER and got a referral to an ENT there. Eventually I saw the doctor, and he did a hearing test and gave me the results to take back to Colorado.

Once we got back, I made an appointment with an ENT here, and more tests were done. The doctor ordered an MRI, and I saw a neurologist as well, because he determined that my hearing loss was central. A couple weeks passed, and I then got a letter from the neurologist in the mail suggesting that I may have Mitochrondrial Neurogastrointestinal Encephalopathy disease, or MNGIE disease.

After looking this condition up, I realized that I may have found the cause of all my problems. All of my symptoms were there. Hearing loss, extreme weight loss, dysmotility, dysphasia, neuropathy, ptosis, gastroparesis, malnutriton... I couldn't imagine it being anything else, and I was so happy to finally have an answer after 5 years.

Weeks went by, and we made arrangements to have testing done for the disease. I went to Children's Hospital in Denver to have the testing done, and to discuss the MNGIE. The samples were sent to Baylor University and to Columbia University, which is where Dr. Michio Hirano, a MNGIE specialist, works.

You can go ahead and guess that my tests came back positive.

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