Last Friday I learned my official diagnosis is UIP – usual interstitial pneumonitis. I asked my pulmo what the difference is between UIP and IPF. My understanding is that UIP is a form of IPF and they are all ILD (interstitial lung disease) — or maybe IPF is a form of UIP. Whatever, IDK (I don’t know).
My wheezy weekend landed me back on prednisone and in my doctor’s office today. That’s where I found out a whole lot of interesting stuff (including more acronyms, grrrr!)
They cultured my lung at the same time they biopsied it and they’ve found an AFB in one of my lobes. AFB – acid-fast bacteria. My doc says AFBs are found in the soil, on faucets, floors, just about anywhere. A myriad of diseases are caused by AFBs, including TB, bovine TB, various cousins of TB and leprosy. I don’t have symptoms of any of those (TG – thank God!) In fact, I don’t have symptoms of any infection. So, he thinks it’s a contaminent I inhaled at some point and lodged in my lung — not contagious, not infectious, JHO (just hanging out). The culture was sent off to the state lab for identification. We’ll find out more at my visit next week. Stay tuned!
It looks like I qualify for the protocol Dr. Ettinger is running right now (YAY)! We have to clear the AFB first, and I have to finish healing from surgery. But, if all goes well, I should be able to enroll in about 6 weeks. The doc tells me they are testing an anti-fibrotic medicine. Once I’ve met with the study staff, I’ll fill you in on the details.
I also met with my new internist today (I booted my previous doc off the team — the one with the unpronouncable name who ignored my increasing shortness of breath for 2 years.) I like my new doc. He’s no nonsense and thorough. We agreed my pulmo will take care of my lungs, he’ll take care of the rest, and I just have to lose weight. Sounds fair.
So, I am embarking on a new quest to lose 80 pounds and get fit. My focus now needs to be on getting my body ready for transplant surgery, whenever that may be. Be prepared. I may start sharing tasty, healthy recipes in the near future. If you have any favorites, please post them as well!
I’ve also decided to jump on the alphabet bandwagon and create my own acronym, which will be my mantra from now on. ERSR-GMAAM, which translates to Eat Right Sleep Right-Get Off My Ass and Move. Of course, I should have been ERSR-GMAAMing all along. Another one of those things I just “never got around to.” If this isn’t enough to get me whipped into shape, then I am hopeless.
Ok. All together now…. ERSR-GMAAM (er sir g mom) Yeah, you got it!