Thanks to modern technology, especially something called a google ...
Thanks to social networking...
Thanks to creative health care practices...
And thanks to frequent flier miles and Marriott points...
We have assembled the 2013 National Metabolic all star team.
Director of personnel is mom. There is no one who can compile research data from a laptop faster than my mom. While it doesn't make you a household name like Joey Chesnut who can eat 69 hot dogs in 10 minutes, it sure comes in handy when you have a medical disorder that only a handful of doctors specialize in.
Next in the chain of command and following all the daily ups and downs lately is Dr. Mike Whistler. He is here in Grand Junction and if it were not for him, mom would have moved us back to Indianapolis by now. He has been great with managing info from the various out of state specialists to make sure the overall plan works well. He would also be in charge of managing any future crises that would happen locally.
New to the team is Dr. Brendan Lanpher at National Children's hospital in Washinton DC. He is one of few geneticists in the country who specializes in biochemical genetics specifically. He came highly recommended by a family who has a 3 year old with a similar metabolic disease. They have experienced with what can happen if a crisis is not handled properly and therefore they are very picky about who is in control. So if Dr. Lanpher can handle her case, he is more than qualified to handle mine.
And last but not least, is Dr. Fran Kendall in Atlanta, Georgia. We hear she is the top dog in the area of metabolic and mitochondrial medicine. Mom was so excited we got accepted into her practice. She gives out of state patients the opportunity to do remote consults because she only serves as a second opinion. She will look at all of my tests, labs, and medical history and give the rest of the team any recommendations for further testing and ongoing management. She has patients from all over the world so she has seen just about everything.
We now have all regions of the US involved in my care. If anything bad happens, mom says there is nothing more we could have done. Every stone has been turned and every player carefully selected. She does not get to this point in her research too often. Total cost of my health care escapade...$0. Believe it or not, national children's is in network for our insurance. And with miles and points our only expense will be metro pass and food. Not bad.
I had gotten a few questions regarding the Washington DC trip so I thought I would explain our plan before we leave Monday. That way the next post can be fun DC pictures and not boring medical stuff.
I can't have a post without a picture. And I just couldn't top Drew mowing the lawn with a sombrero to keep the sun out of his eyes.
Cheers!
alexa
No comments:
Post a Comment