Bluer Than Blue

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My Favorite color is green, though you wouldn’t know it to look at me.  These days, I’m more likely to be sporting a rather sickly blue — blue lips, blue fingertips, blue finger nails, even blue toenails.  You see, when my oxygen sats drop, I go Smurf. And since my sats drop when I do just about anything, I spend a lot of time looking, well, blue.  It’s a fashion statement, though I’m not sure it’s a very good one!

During my check up at the doctor yesterday, I couldn’t get my sats above 89, even on 15 LPM  (anything above 90 pulse ox is considered good, and 15 LPM is a  pretty high flow rate).  Turns out, I have bronchitis.  So, I’ve added Cipro and lasix to my daily handful of pills.  The lasix should reduce any fluid that might be building up around my lungs.  The unfortunate side effect, though, is that it brings my blood pressure way down, which can make me dizzy.  If I get up too fast, my knees buckle.  It’s a weird feeling to have your knees just give way.

The most disappointing thing, though, is that the doc decided to hold off on reducing my prednisone until I’ve worked through this flare.  Right now, I’m at 20 mg.  The magic number is 10 mg.  That’s when we’ll start talking about me going back to work.  And boy do I want to get back to work!   The doc also raised my Imuran to 125 mg … we’re working up to 150 mg.  Imuran is an anti-rejection drug that should take care of a lot of the inflammation, which allows us to reduce the prednisone.  Got it?  Good!

So, in the meantime, I continue to wait, do my rehab, and thank God for every step in the right direction.  Since I have a bit more time on my hands, anyone have a book they’d like to recommend?
TIP:  When you get breathless, usually your first instinct is to pant.  But panting is not the most efficient way to replace oxygen.  All lung patients learn a technique called “pursed lip breathing”.  One of the respiratory therapists at rehab describes it as “smell the flowers, blow out the candles”.  Take a controlled deep breath in through your nose and blow it out slowly through pursed lips.  This technique pushes the oxygen deep into your lungs, whereas panting usually results in lots of shallow breaths.  So, even if you don’t have lung disease, try pursed lip breathing the next time you’re feeling breathless.  You’ll be surprised how quickly your breathing comes back to normal!

And a Special Thank You… to everyone who signed up as an organ donor and helped spread the word during Pulmonary Fibrosis Awareness Week.  Your support means so much to all of us suffering with this disease.  You’re alll heroes in my book!

 

PHOTO CREDIT: inspiredwombat via Flikr

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A Little Dab Will Do Ya

  I had my post-hospital follow-up visit with my pulmonologist today.  The adventure started with a CT scan to see how well my lungs were healing from my most recent bout of pneumonia… and it ended with me learning how to give myself a shot in the belly.  Needless to say, it was an interesting afternoon.

The CT scan showed a slight improvement in the patches of “ground glass” — hazy areas that indicate lingering inflammation in my lungs.  But, after two weeks of IV antibiotics and ongoing prednisone, the Doc wasn’t pleased with the speed of my progress.  So, he’s decided to add a short course of Imuran to my daily 40 mg dose of prednisone in hopes of speeding this thing along.

Imuran is used to prevent transplant rejection, as well as to treat rheumatoid arthritis.  In short, we’ve added one immunosuppressant on top of another.  I am now, as one PF group member on Facebook put it, a germ magnet.  Hand sanitizer — which we lovingly call “goop” in my family — is my new best friend.  I’ve always carried it with me.  Now I carry multiple bottles just in case.

When I was diagnosed with pulmonary fibrosis last fall, my Doc told me infection was my Achilles heal.  A simple cold for someone else could land me in the me in the hospital. I developed a healthy fear of being sneezed on, coughed at or unknowingly slimed in any number of ways.  I gelled shopping carts, telephones, computer keyboards and the steering wheel of my car.  I bleached the sponge in the breakroom at work.  I washed my hands until they chapped and liberally applied goop before meals and after shaking hands.  And still… two cases of pneumonia and two hospital stays.  What’s a germ magnet to do?

I guess the only thing I can do is stick to the plan …. ERSRGOMAAM  (eat right, sleep right, get off my ass and move)… and goop!  Lots and lots of goop!

But what about that belly shot thing?  That has nothing to do with my PF… at least not directly.  That little party is all thanks to my erstwhile picc line.  The high dose aspirin (650 mg, 3x a day) wasn’t  doing anything to bust the clot. In fact, my left arm is even more swollen and is now tender on the inside of my elbow.  We’ve switched to twice daily injections of the blood thinner Lovenox.  I’m supposed to shoot myself around my belly button, and each injection leaves a little bruise.  I’m looking at five days of this  (10 injections), so I’m thinking about “tatooing” an “S” around my navel.  Or maybe a smiley face.  Hmmmm…. this could be fun!  Any other ideas?