I Am a Middle-Aged Drama Queen

arrowAnyone who walks away with seven stitches and a near perfect arrow-shaped scar should have a good story to tell, right? Attacked by my recliner doesn’t seem to qualify, though. But that’s what happened. Really, I wouldn’t make up something so lame.

I blame the prednisone, of course. It’s made my skin so thin and papery that staring at it too hard can cause a tear. That’s why a simple scratch that should have left a red mark at most resulted in a 3-inch gash topped by a chevron-shaped skin flap.  I didn’t even know I’d injured myself until I saw blood dripping on the carpet. One look at the wound and I knew I needed stitches.

Luckily, we have a wonderful urgent care just five minutes from the house. Proximity is key not just for convenience — it also means if my portables run low, my husband can dash home for a quick fill. The doc was fast with his patch job, though, so we managed the outing on what I had with me. Still, the whole incident was full of drama — drama that we are all growing quite tired of.

Bum lungs and bad-ass meds keep me teetering out here on the brink. A little stumble becomes a broken ankle and surgery. The sniffles morph into pneumonia. An extra half slice of pizza leads to an evening of difficult breathing followed by 20 minutes of roller coaster sats and projectile coughing at bedtime. Drama Queen is not my style and it’s a role I inhabit reluctantly. But maybe that’s the lesson here. Let the drama flow through me and over me without letting it define me.

Unfortunately, no matter how Zen I become about it all, everything that happens to me affects my family, too.  If I need to go to the ER/urgent care/doctor, someone has to drop everything and take me. If a tube becomes unplugged, someone has to untangle the snarl and reconnect it. If my tank runs dry, someone has to fill a new one for me. Caregiving is emotionally, mentally and physically draining work — especially for those who take care of patients like me, dancing on the edge.  I have the easy part: breathing, hoping, waiting. But my family? They’re the ones who deserve medals, parades and their own feast days.

 

Roid Rage

PrednisoneI’ve been on high-dose prednisone to  treat my pulmonary fibrosis since I was diagnosed two years ago. I don’t have a moon face or ankle swelling often associated with prednisone use, so I always figured I’d gotten off easy when it comes to steroid side-effects. Silly girl. I should have known nothing is easy or simple, especially for me.

When I broke my ankle two months ago, we discovered that prednisone has been eating away at my bones.  My teeth have suddenly become quite sensitive, another prednisone by-product. And now, the greatest gift of all — lousy healing. As the final cast came off my ankle last week, the top three inches of my incision was a gaping wound. Okay, gaping may be a bit of an exaggeration.  It’s maybe a quarter-inch wide and an 1/8-inch deep. Not huge, but not healed either.  Bone Doc wanted to take me back to the OR to debride and re-close the incision. But that would have required at least a regional block (too deep for a local) and more futzing with the Optiflow, not to mention increased risk of transplant-thwarting respiratory issues.  So, we opted to go to the Wound Care Center at St. Luke’s.  I’m so glad we did!

Wound Doc says it looks like it will heal fine — we just need to start using the appropriate dressing and give it 2 or 3 months. That’s fine by me. Every couple of days I goop the wound with polysporin and apply a hydrocolloid dressing.  The doc says the waterproof dressing creates a nice moist, warm environment to encourage granulation (what my mom used to call “proud flesh”), which forms the underlayment for new skin. The prednisone will slow things down, but healing will occur. Whew!

The other disappointing news from last week’s de-casting session was that I am still non-weight bearing on the ankle. Thankfully, Bone Doc says I can start putting my Frankenboot to use next Frankenbootweek, just in time to help in the kitchen for Turkey Day. But he wants me to hold off on physical therapy for a little longer to give my roid-ravaged bone some extra healing time.

My loathe/hate relationship with prednisone continues. But despite the bumps it’s added to my road, I still have much to be thankful for.  And, after my November 26 visit with the transplant team at Barnes, I hope there will be even more to celebrate.

Tips for Dealing with Steroid Side Effects 

  • Up your calcium intake to at least 1500 mg a day with a combination of calcium supplements and calcium-rich foods such as milk, cheese and yogurt. Remember to up your Vitamin D intake, too — 400-800 IU daily.
  • Weight-bearing exercise (like walking) will help stabilize bone mass and burn calories.
  • Steroids affect metabolism and fat distribution, increasing appetite and adding fat deposits to the abdomen and neck. Focus on eating a healthful low-fat, low-calorie diet to counteract weight gain.
  • Fluid retention is common with steroid use. Reduce (or eliminate) salt-use in cooking and at the table, and look for low-sodium versions of typically high-sodium foods such as: chips and crackers, soups, prepared foods, canned foods, dressings and condiments, and restaurant meals.
  • Steroids suppress the immune system, so get a flu shot, wash your hands frequently, and avoid anyone who is coughing or sneezing.
  • Tell your eye doctor and dentist about your medication, since steroids can cause cataracts or glaucoma as well as increased tooth sensitivity.
  • Other side effects to watch for and discuss with your doctor:  hip pain (may indicate aseptic necrosis of the hip joint), insomnia, mood changes, elevated blood pressure, elevated blood sugar.

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

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?

 

Fragile Balance

  

A month ago, I was flying high. My sats were up (96 on room air, the best since this whole thing started!)  And my prednisone was down (7½ mg and moving lower).

Then, I caught a nasty stomach flu that laid me out for 2 full days.  I went 48 hours without prednisone, inhalers or nebulizer treatments.  By the 3rd day, I felt human enough to go back to work and start my meds again.  On day 4, the wheezing began.  By day 5, I got winded just walking from the bed to the bathroom.  I wore my canula around the house that weekend, called the doc to bump up my prednisone and wondered how everything could go so wrong so fast. 

Things have been rocky ever since.  Just when I think I have a successful taper going on my prednisone, I’ll feel a little rattle start. I ignored it for 3 days last time, until it escalated to a constant wheeze.  Bump — back up to 30 mg.  I started tapering again this weekend.  Keep your fingers crossed that my lungs stay clear! 

 In the meantime, I watch the weather, hoping for mild temperatures. Cold air is especially tough with pulmonary fibrosis. It constricts everything, which makes it harder to breath.  Lately, my lungs have felt smoky – it’s the only way I can think to describe it.  They feel full, not with sticky goo, but with something that simply makes the air inside them feel heavy. 

 The prednisone is kicking my ass, too.  Luckily, I don’t have the usual side effects like water retention, moon face or even elevated blood sugar.  I do, however, deal with insomnia.  I discovered that 10 mg of melatonin helps me drift off if I take it right at bedtime.  Unfortunately, if I forget and try to take it once the insomnia takes hold, it’s pretty useless. 

 The real killer for me, though, is the muscle spasms.  They’re like nothing I’ve ever experienced before, catching me completely off-guard, gripping tight and refusing to let go.  My fingers and toes will suddenly rearrange themselves at awkward angles, or a charley horse will turn my calf or the arch of my foot into a tight ball. But the worst by far is my torso.  Muscles spasm in random patterns from my spine around to my stomach, making it hard to breathe.  Simply rolling over in bed can tie me up in knots. Aleve helps, but I worry about what daily doses will do to my stomach.  I’m also trying to up my potassium intake – I just haven’t found the magic formula yet.

 I don’t mean to sound gloomy, because I’m really doing pretty well.  It was just a huge shock to suddenly realize how fragile things are now.  I never really thought about my health, but it needs to be a daily focus now.  Getting myself ready physically, emotionally and mentally for both the progression of my disease and the eventual lung transplant I hope will one day save my life – that’s priority #1.  It’s hard to think that… to actually write that knowing I have two teens at home who are trying to muddle through one of the most difficult times of their young lives.  I’ve really struggled trying to balance my needs with theirs.  One more knife edge I have to navigate daily.

What about you?  What do you have to work at to keep in balance?

Healing, Hacking and Harumphing

It’s been awhile and I have lots to catch you up on, so let’s dive in!  Today is 8 weeks post-op.  I have a little residual numbness on my right side, but nothing really bothersome. At this point, I think I can call myself healed from the thoracoscopy.  My next chest xray is scheduled for the Monday after Thanksgiving — I’m eager to see if there’s been any change or not. Fingers crossed that all looks the same as my baseline images!

I’m still trying to get off prednisone, though I have confidence I will succeed this time.  Until now, I haven’t been able to drop below 15 mg without getting wheezy.  My pulmo decided to try a slower step down, dropping in increments of 2.5 mg instead of 5.  I’m happy to say I’ve been at 10 mg for 4 days now and no wheezing!  As soon as I can get off prednisone, I’ll meet with the research team about joining the current protocol.  Thankfully, I haven’t had any of the typical side effects associated with prednisone (edema, “moon face”, irritability), but I’m still eager to be done with the stuff.  It suppresses the immune system, and since my #1 risk factor is infection, it’s gotta go!

MAC Attack?

Speaking of infection, I finally saw the infectious disease doc to talk about the MAC “colonization” in my right lung.  Dr. Campbell told me MAC (mycobacterium avium complex) is actually quite common, and is even found in drinking water. Most people’s immune systems fight it off no problem.  However, white women over 50 (guilty on all counts) seem to have a propensity for MAC infections.  The thing is, they don’t think I’m infected. The doc suspects I inhaled some MAC-infested water vapor during my shower the morning of surgery and my body hadn’t kill it off yet.

To determine whether or not there’s still MAC in my lung, the doc ordered a sputum test. Yes, it’s exactly what it sounds like — hack in a cup. When I agreed to the test, I didn’t realize there was a special technique involved. I guess saliva messes up the results, so I was instructed to expel the sample directly from my lungs into the cup — without touching anything. Short of performing the Heimlich on myself, I was unsure how I would actually do this. I did manage to get a sample that only briefly ricocheted against the roof of my mouth before exiting my body. I hope it was good enough because I am NOT doing that again!

Settling In

I’m now two months into my “new normal” and continue to struggle with understanding exactly what that means.  Friends are still finding out about my diagnosis and their reactions sometimes surprise me.  Most give a warm hug and offer prayers, both of which mean the world to me.  But it’s the look of horror on their faces and exclamations of “how awful!” that confuse me.  I guess it is awful — I would never have chosen this for myself or anyone else. Yet it is now a part of my reality, another piece added to my personal mosaic, just like my love of jazz, spy novels and mom’s meatloaf.

I’m sure the moment will come when I suddenly realize I’m not thinking about it, when grabbing my pony bottle will be as natural as grabbing my purse, when watching a sunset paint the sky with fire will once again simply bring joy in being at the right place rather than a conscious acknowledgement that I need to savor every moment.  Someday, the new normal will just be normal. I hope that day’s not too far off.

What’s up with you?