Breathing Freely — Another Step in My March Toward Normal

Not this MAC

The room is quiet as I sit down to write this post. Stephie’s silence is yet another indication that I am nearly recovered from my lung biopsy a month ago. During my pulmo appointment this week, I was able to walk 150 feet on room air before my pulse ox  dropped below 90%. And even though my sats dipped to 85, a minute of deep breathing quickly brought me back up to to 91 and the all-important “green zone.”

What this means is that I am no longer tethered to Stephie while at home.  I can roam freely throughout the house under my own lung power! Of course, this also means I can now reach the washer and dryer unimpeded, so I guess laundry moves back over to my chore column. Bummer.  But the joy of winding up that 70-ft. cannula more than makes up for it!

I still wear the cannula to bed, and take my pony bottles with me when I go out just in case I have to walk further than 150 ft.  And I will probably always use oxygen when I exercise. But I am finally starting to feel “normal” again.  In fact, other than a little residual numbness on torso that will go away eventually, I’d say I’m pretty much back to my old self.  Wait. That’s not true.  I’ll never be my “old self” again. Things are different now. I am different. But in many ways I feel stronger than I have in many years — stronger emotionally, stronger mentally and even stronger physically.  The wracking cough is under control. I’m eating better, treating my body with the respect it deserves, and I have a focus and clarity I haven’t felt for a very long time.

Monday I return to work.  I’m eager to see my friends and coworkers again and ready to get back to business.  I have to admit though, I’m a little nervous — nervous about how the new me fits into this final piece of the “normal” puzzle.  I’ll know soon enough.

UPDATE — My AFB is MAC

More news from my appointment last week — the lab identified the AFB they cultured from my lung.  It’s actually MAC (mycobacterium avium complex).  My kids laughed when they heard the name of the bacteria.  Our dog’s name is Mac (that’s him pictured above). He fancies himself a parrot and frequently perches his furry bum on my shoulder when I sit on the sofa. They thought perhaps I’d been exposed to a bit too much of Mac’s business end over the years. They may not be far off.  MAC bacteria are actually quite common in the environment, but usually only infect people with compromised immune systems or underlying lung disease.  The usual treatment is a year-long course of Zithromax or a combo Zithromax and Biaxcyn.

I see an infectious disease specialist next week for a consult.  Dr. Potts isn’t sure if I have a MAC infection, of if I’m just colonized with MAC (creepy, I know).  And the decision to treat isn’t a given.  I promised him I’d keep his life interesting and so far I’m living up to my word!

I’ve also dropped, 10 pounds which puts me 1/8 of the way to my goal.  At this point, I’m simply focused on eating fresh food with lots of greens, lean protein and whole grains.

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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!