@colleenyoung THANK YOU SO MUCH for replying and tagging members! I have searched and searched high and low and cannot find any resources or support on this. It is extremely isolating in an already scary and stressful situation. Then add in being dropped by insurance and having to battle that in the middle of everything. We just feel defeated.
His team of doctors have been great. They collaborate over everything and know his case in and out, but they cannot answer all our questions because it is just so rare and the research is not there for a healthy person. I provided more info about his treatment plan in a reply on this thread. His team of doctors consists of infectious disease (Who originally found it and diagnosed him, which is a whole other story in itself) and pulmonary. He has been through not just the treatment, but a spinal tap, biopsies and so many tests.
I feel like I am desperate at this point just to be heard or understood. No one understands how sick he is because he doesn't "look" sick. But my husband has always been a very hard worker and not only is his health affecting him physically, but mentally as well. He is my "rock" and I have had to watch him suffer and struggle for over a year and I would do anything to make it go away. We trust and really like his drs but with such a rare case and facing a possible lung removal we want to look into getting a 2nd opinion.