Ack! I Have to Learn a New Alphabet, Too!

Flavored O2 Bars - if only they had home versions!

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!

 

 

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6 thoughts on “Ack! I Have to Learn a New Alphabet, Too!

  1. Pingback: Reality Gasps

  2. Go Girl!!
    Strong advocacy makes all the difference in the world. You got it right… keep asking questions and exploring options! I like the new acronym, but my modification… ERSR-GMAAM (er sir g ma’m) Do it with a bit of southern drawl for a bit more ‘RESPECT’!!

    My small weight loss hint… I keep chunks of apples, blueberries, raspberries, whatever fruit keeps the munchies at bay. I get that sugar hit, but with fiber. Curtis likes sliced carrots, my daughter makes me soak them so they feel ‘special’. Sorry, I’m just not a celery type of person… go for the taste, spices, crunch/munch.

  3. Lori ~ you continue to impress me with your sense of humor as you tackle this obstacle in your life! I’m convinced in cases like this attitude is more than half the battle and you seem more determined that ever to kick some butt! I love your new acronym ERSR-GMAAM! Keep the positiveness flowing girl!

  4. I love you and your sense of humor! Believe me- I am on your bandwagon – we should make shirts ERSR-GMAAM! I look forward to those recipes. Sometime I’d like to hear about your journey that brought you to your diagnosis…

    • HMU on FB and I’ll tell you the whole story. The Reader’s Digest version: years of misdiagnosis (asthma) and a too-timid disposition on my part that kept me from pushing harder when I knew another stinking inhaler wasn’t going to help.

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