Had the pleasure today of meeting two rheumatologists who are on my team, and honestly it was such a good experience. Admittedly I feel like It takes a special kind of person to want to become a doctor, and then go into rheumatology. It seems like an underappreciated specialty, one of those things where no one thinks about it until they need it. Compared to some of the other specialties, it definitely isn’t sexy: your body attacking itself.

I learned that as of today, my official diagnosis is: Interstitial Lung Disease with Autoimmune Features. I tested positive for several different autoimmune markers, but don’t have enough symptoms or enough positive tests in any one category to give me a diagnosis of a specific autoimmune disease. I feel like giving me a label that isn’t accurate just to put me in a box doesn’t make sense, so I’m completely comfortable with this. The doctor said some people don’t know how to process having symptoms with no name. I figure, I’m dealing with the mixed bag of symptoms that life gave me, regardless of whether they have an official name. Heck, I’ll probably come up with my own name and it’s not like me to fit into a “box” or “label” anyway.

As expected, they are going to significantly increase my immunosuppressants, and we will be watching for any side effects. From talking to the doctors and listening to the stories from the ILD Community online, some of these medicines have very unpleasant side effects. So before we crank up everything, they want to make sure that my body is strong enough to withstand these new doses. I’ll be taking a pretty thorough personal inventory daily of any new changes and stay in frequent contact with the team at Cooper.

In my opinion, the best thing to come out of today besides a more thorough understanding of what my body is going through is the news that according to my rheumatology team, I would actually be an excellent candidate for a lung transplant. They added several caveats that they are not pulmonologists, so ultimately the timing, need and viability of that is up to the ILD specialists and pulmonologists, but my autoimmune condition does not prohibit me from being a lung transplant recipient. If anything, they felt that my age and overall health otherwise made me a very strong candidate. That is music to my ears! The people whose stories I have followed thus far who have had lung transplants are very pleased with the results and their new lives. Admittedly, the recovery journey appears to be extremely painful but undoubtedly worth it in the end.

So, in a nutshell- a good visit with the doctors, a solid plan moving forward (barring any complications my body throws us due to new meds), and some optimism for long term treatment. I count that as a win- unlike the picture up above that maybe should have been retaken to make me look less insane!