Pipsqueak: I know exactly how your feeling as I went through that in 2002 and again in 2007. No bones about it, it’s a tough decision. I’m sure if you go for a 2nd opinon you will feel much better about it. First of all, unless NJH told you you had to have the surgery ASAP, you can put it off for a few months. If you postpone it NJH will still be there for you and will understand your wanting a 2nd opinion. (When I was told I needed to have my entire right lung removed I went for 4 other opinions before I made up my mind.)
Secondly you have to decide where you want to get your 2nd opinion. Do you want to go to NIH or to UTHCT? I would contact each center to see who can get you in the quickest. It also depends on which center is the easiest for you to get you and the most cost efficient as well.
Here are the numbers to call to get the ball rolling. Just take one day at a time and try not to get stressed out as that’s the worse thing you can do when you have an NTM disease, plus it doesn’t change the situation.
UTHCT – Dr Richard Wallace (903) 877-3451 or (903) 877-7916 Ask for the Infectious Disease clinic.
NIH – Reggie Claypool (301) 402-7831 (Reggie registers people for the Clinical Trial) I’m not sure if they would see you quicker if you told them you didn’t want to be in the trial but just want just a consult with Dr. Steven Holland or Dr. Oliviea.
Best of luck and let us know what you decide. Carole