NIH...here I come!

The Mueller family has had a little medical adventure lately and I am finally ready to blog about it. On Sunday, I fly to the National Institutes of Health (NIH) in Washington, D.C., to participate in a research study. Here's a little background...

I haven't felt "myself" for the past 3 years. A lot of the noticeable symptoms were similar to those of hormonal changes so we attributed it to me having the twins and/or just getting older.
After some blood work in October, I was diagnosed with a rare condition (Cushing's Syndrome) where my body is producing too much cortisol, due to a tumor. The cortisol is causing symptoms such as weight gain, high blood pressure, and changes in memory, mood and concentration. Most commonly with Cushing's, this tumor is located on the pituitary gland (and tends to be benign) so we have spent the past 3 months trying to find this tumor.

It has been a frustrating few months. The condition is rare to begin with, so there isn't a local "expert." Plus, I've been working with 4 doctors all from different hospitals so coordination and communication has been a challenge. In addition, many of my tests and procedures had questionable results. One MRI was inconclusive; the second MRI was very unusual and my neurosurgeon wanted to consult with the experts; one endocrinologist interpreted my invasive blood work results saying it confirms a tumor on the pituitary and to schedule exploratory neurosurgery; my second endocrinologist's interpretation was exactly the opposite, saying the tumor is somewhere else in the body.

Through this all, I have been continuously research, reading and learning about the condition and NIH has very impressive, ongoing research. Even though it will be difficult to be away from my family, we feel it is best to go to the "experts" at this point.

Starting Sunday, I will be admitted to NIH for one week to basically repeat all tests/procedures that were performed here in Indy and have some new tests done. If the tumor is located during this first week, I would be re-admitted for surgery (likely in early January). If the tumor is not located, I would be re-admitted for a research study imaging protocol (which would hopefully lead to locating and eliminating the tumor).

We have been blessed with supportive family and friends through this ongoing adventure and I have no hesitation that super daddy Jason can hold down the house while I am gone. Through all the anxiousness, God has taught me patience and I am now very comfortable with the situation. We'll keep things updated on this blog as we move ahead on this adventure!