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.

Retooling My Attitude

tool_belt

“If the only tool you have is a hammer, you tend to see every problem as a nail.”

Abraham Maslow (1908-1970)

The right tool makes every job easier, whether you’re a cook or a carpenter, a seamstress or a surgeon.  And sometimes, the simplest tool can make a world of difference.

A few days ago I received a grabber as a gift.  You’ve seen them advertised on TV — a trigger at one end operates a claw mechanism at the other.  You can get them as fancy as you want — foldable, extendable, super heavy duty.  I opted for off-the-rack at Walmart, less than $15. But what a little miracle it is!

You see, the stiffness and scarring caused by my disease limits my lung capacity.  That’s why any activity causes my O2 saturation to drop like a rock.  When I bend over, I get even more breathless because my innards compress against my lungs, further reducing my breathing capacity.  This makes simple tasks, like picking up clothes off the floor, a feat that requires planning. Bending twice makes me dizzy. A third time requires a rest break and pursed lip breathing.  grabber

As a result, I let things pile up.  I’d kick clothes into a mound for several days and then gather them up all at once. Errant kleenex and nebulizer ampules dotted the floor around my chair.  When I did get around to picking up, it took half a day of crawling, reaching, gathering and breathing breaks to finally see the carpet again. Not anymore!  With my grabber, I spend less than 30 seconds each morning picking up my room without a huff or a puff.  If something slips off the hanger in my closet, no worries!  Even the long lost socks behind the dryer are back in play.

I never realized something so simple could have such an impact on my day.  Breathing easier is a definite plus.  But I think the biggest benefit is that I feel just a little more in control. When I walk into my bedroom, it isn’t littered with the detritus of my disease.  It’s neat and clean, no longer screaming a constant reminder of the little things that seem to get harder and harder to do.  I know that my disease will take its course, there’s really nothing I can do to change that. But I can affect my attitude and my outlook — and those are the most powerful tools I have.

It’s (Not) All About Me

not_meChronic illness has a way of redefining who you are if you aren’t very careful.  It engulfs every waking moment:  medicine schedules, treatments, therapies, doctors appointments, research, dealing with symptoms, support groups, thoughts, prayers …. you get the idea.  It’s a full-time job. And for awhile there, I fooled myself into thinking it was my full time job, and mine only.  But I was wrong. Very wrong.

As my disease has progressed, I’ve watched my family become “sick-centric”.  My illness worms its way into decisions as mundane as who will drop off my daughter at the library, to bigger things, like where (and if) we go on vacation this year. Too often, family activities are dictated by whether I’m having a good day or a bad day.  And, since most household chores leave me gasping for breath, my husband has taken over all the shopping as well as most of the housework — in addition to all of the yard work.  I see the strain on his face and it tears me up inside. Like so many people I’ve met with PF, the guilt can be overwhelming at times.

Yet, even though our activities have changed drastically, I still clung to the hope that my kids were relatively unscathed by all of this.  We’ve talked about my illness, and I’ve told them I’m always here if they have questions or want to talk.  Since both have remained fairly mute on the subject, I figured they each viewed all of this as just a bump in the road.  Again I was wrong.  So very wrong.

My daughter had to write about a personal experience for an English assignment.  She chose to write about when we learned of my diagnosis.  We sat in my bedroom, talking about that day.  She distinctly remembered  a frigid winter landscape, bare trees, gray skies and icy streams.  I was diagnosed in early fall — September.  The trees were still green, the sun bright in the sky and the temperature was almost balmy.  She became very upset, convinced I was wrong, so I told her to write it the way she remembered.  When I read the finished essay, I realized why she was so adamant about the weather.  Her memory of a bleak winter day was so vivid because that’s exactly how she felt.

The piece was beautifully written, and brutally honest.  And in it, I discovered that the news that day crushed my daughter’s innocence.  The mother who was supposed to always be there, no matter how much teen angst she tossed my way, was suddenly fragile and broken. She could no longer be certain when or if I’d be there. I’ve sobbed over that essay, especially as I see the same theme pop up in other projects and assignments.

My son, who is pre-law at Saint Louis University, has been deeply affected by my disease in his own way.  He’s a born debater, and unlike most kids his age, he uses his Facebook updates for serious discussion of issues that concern him most.  During the Presidential election, he posted a plea asking people to stop their political mud slinging for just a moment and take a wholly humanitarian view of “Obamacare”.  He used me as an example of the importance of universal health care.  My PF bretheren and I are uninsurable.  In my case, I’m looking at four years before I will have insurance to cover a lung transplant.  Since ability to pay is a prerequisite for getting on the “the list”, I risk the very real possibility that I may never make the list, or be dropped from it when I am most in need.  It happens, I’ve seen it.  And my son worries about that.  While I’m proud of his understanding and vision, I also know that he’s just 18.  Right now he should be focused on his studies, his girlfriend and hanging out with friends.

It’s not all about me.  And yet it is.  My disease is indiscriminate. Though it attacks my lungs, it devastates the whole family.  I can only hope (and pray) that whatever I learn/understand/accomplish through this illness, will be shared by the people I love most.

So Long, Farewell, Auf Wiedersehen, Adieu

goodbyeAt the stroke of midnight on New Year’s Eve, as the world greeted 2013, I closed the book on a huge chapter in my life.  As of January 1, I officially joined the ranks of the disabled.  The transition was more symbolic than anything, since I have actually been on medical leave since June.  Even so, I found myself swallowing hard at the finality of it.

The decision to leave the work force was not easy for me.  I’ve always worked. Though I was a stay-at-home mom when my kids were young, I still clocked 30 – 40 hours a week (sometimes more) as a freelancer. The thought of not working was anathema to me. In fact, until just a few weeks ago, I was convinced I would return to my job once I’d fully recovered from my bouts of pneumonia last spring. But each time I drew close to reaching the “magic number” (10 mg prednisone), I had a flare.  After a few long discussions with my doctor and a sobering look at how my disease has affected my daily life, I realized that returning to work was impossible. The constant threat of infection is a danger I can’t afford. And, how can I expect my co-workers to keep picking up the pieces for me when a sudden flare lays me out for weeks at a time?

When I entered the hospital in early December with my third case of pneumonia in just nine months, I knew I’d made the only decision I could.  Thankfully, I had purchased Long Term Disability insurance through my employer.  If you have the opportunity to buy LTD, do it NOW.  Someone gave me this advice at the beginning of my career and I am so thankful I listened.  This is our family income for now.  Every penny spent over the years was worth it.

I also immediately applied for SSDI (Social Security Disability Insurance).  My main purpose for wanting SSDI is the Medicare option.  After two years of SSDI benefits, you are automatically eligible for Medicare. Unfortunately, you have to be on Medicare an additional two years before it will pay for a transplant. That’s four years total before Medicare will cover a lung transplant. So, it was important to me to apply and get accepted as quickly as possible.

While researching the application process, though, I read that some 70% of SSDI applications are turned down the first time. Thankfully, there is something called the Compassionate Allowances List.  The CAL is a list of 165 medical conditions that are considered so severe, they are sure to qualify for disability benefits.  Applicants who have CAL conditions are fast-tracked and benefits are decided upon within a matter of days rather than months (or even years). IPF is on the list, and I received my approval three weeks after I’d submitted my application online. Finally… IPF is good for something!

Now that my benefits are in place (and the Medicare clock has started its slow count-down), I am faced with what to do with myself.  I’ve been gobbling up books by the dozen. My husband and I have started hunting down healthier recipes to help my ongoing weight-loss effort.  And I am even eyeing my knitting basket with its snarl of remnant yarn, trying to come up with something fun and creative.  But in the end, this is all just idleness.  What can I do that will make a difference for someone? What can I explore that will teach me something new?  I’m still figuring that out and I’m wide open to suggestions.

In the meantime, here are a few helpful links if you are looking into applying for SSDI:

Social Security Disability Page   The application is two parts: the benefit application itself and the Adult Disability Report. The report is where you will list your doctors, medications, tests, hospital stays, etc. Download the checklist first and gather up all of your info before you start. It will make it much easier (and faster) to complete the report online.  Remember to use the “Remarks” box at the end of the report to paint a picture of what your life is like because of your condition.

SSDI and COBRA Extension   When you are approved for SSDI benefits, you may be able to extend your COBRA coverage an additional 11 months (for a total of 29 months). This article explains it all.

Why You Want SSDI   This is another “lawyer” site, but it does give a great summary of the benefits of receiving SSDI.

 

Tethered

I use supplemental oxygen 24/7.  That means wherever I go, I have a cannula strapped to my face and a plastic tube connected to my oxygen source.  When I’m on the go, I use a short tube attached to a portable oxygen tank. But at home, I have a 100 ft. “umbilical” that snakes between me and my oxygen concentrator.

My oxygen supplier frequently warns me I shouldn’t use anything longer than 50 ft. because the longer the tube, the lower the O2 flow.  But with my 100-foot tube, I’m free to roam just about anywhere in my house. So, I’ve worked out a compromise — for bed, I plug in with a 25 ft. tube and save the ultra long cannula for daytime.  Convenience has its price, though.  Like when I get myself all wound around the island in the kitchen.  Did I go right or left?  I can’t tell you how many times I’ve gone to the kitchen for something and started back out, only to have my head snapped around as the cannula pulls tight. The kids still smile when they see me backtrack and do a reverse circuit.

Feet pose another obstacle.  It’s not tripping (for me at least) so much as it is standing, as in, “please move, you’re standing on my cannula.”  Standing on my tubing doesn’t hinder the oxygen flow, but it does stop me in my tracks. I thought when I switched to a green high-flow cannula, this little annoyance would be rectified. To my surprise, the family tromps even more on the highly visible green tubing.  My guess (hope) is that they’ve grown so used to my O2 set-up, they don’t really notice the cannula anymore.  Or it may be self-defense on their part.  Whenever my cannula goes taut, I give it a yank, figuring it’s just caught around a corner.  Recently, I’ve been hearing squeals when I tug on my tubing. Seems I’ve been tripping up the kids a lot more than I realized!

Then there are the frequent snarls. Everyone has grown used to me standing in the hall outside my bedroom and growling as I work through another knot. My tubing gets caught on drawer pulls, chair legs and just about anything left on the floor. The dog, of course, takes it all in stride.  He’s become quite adept at disentangling himself whenever my cannula slides by.  And I usually manage to stay fairly unencumbered myself…except for that time I twisted one too many times while making the bed and did a face plant into a pile of pillows. Yes…there were witnesses. We all burst out laughing.

I’ve often thought a portable tube reel (kinda like those retractable dog leashes) would solve a lot of my problems. Unfortunately, nothing like that exists and I am no engineer. Of course, the real answer is “tubeless” oxygen, like wireless Internet.  Oh wait, that’s called “normal breathing”.

In the meantime, while I still have these lungs, I’ll be tethered.  But being tethered isn’t so bad.  The limits of my cannula have forced me to slow down and refocus. I spend a lot of time talking and hanging out with my kids — unhurried and undistracted.  And I’m closer to my brothers than ever.  It’s amazing what happens when you stop thinking about where you should be and concentrate on where you are.

I’ve heard lots of people say they are “grateful” to their disease for waking them up to what’s important in life.  I’m not grateful to IPF — it sucks big time.  But it is part of my life,  a big honking bump in the road. And like all the other bumps, twists and turns I’ve encountered, I’m trying to learn as much as I can from the experience.  So far I’ve discovered that I am surrounded by amazing people eager to help — I just didn’t notice until I slowed down and let them in.  And I’ve realized that if you get stuck heading down one path, you can always backtrack, unwind yourself and try another route.

Photo courtesy of 123rf

Bluer Than Blue

Image

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

Future Tense

  Attitude is everything when you’re fighting for your life. In the 11 months since I was diagnosed, I’ve worked hard to stay positive. Usually that includes finding something to laugh about every day and focusing on the here-and-now.  After all, I can do absolutely nothing about the past, and the future is a crap shoot right now.  So, I guess I shouldn’t be surprised that it was an innocent discussion about the future that caught me up hard and slammed me to my knees. But when it happened, I was wholly unprepared for the emotional gut punch that sent me reeling for weeks.

My husband and I were sitting with our financial planner,  shuffling numbers around to ensure we’d be able to pay for my son’s impending college career.  Periodically we go through our plan to make sure we have all of our needs covered. (All I can say is Thank God we bought that extra life insurance on me 5 years ago…)  Anyway, the planner asked if we were still planning to work to age 65.  That simple question set off klaxons in my head.

Sixty-five?  That’s 14 years away. Will I be able to work til then? Will I even be here then?  Suddenly I was looking full face into my very uncertain future.  I’d glimpsed that monster several times during the previous months, but I was always careful to view it from the periphery — never straight on.  Now, in the full glare of consciousness, the realization that my time here may be quite short hit full force.  It’s one thing to babble about living in the moment, it’s another to actually accept that the moment may be all you have.

When we hit the car, I told my husband about my epiphany.  He waved me off and told me I can’t let myself dwell on the negative.  He was right, but I was now in the grip of the monster… and I couldn’t look away.  A few weeks later, I was in the hospital with my first bout of pneumonia.  My body didn’t feel right… my recovery was slow and the reality of my disease kept glaring at me.

I tried talking about the monster with a few others, but I quickly realized it was even more terrifying for them.  Right now my family and friends are taking their cues from me. If I’m freaked out about my “future”, well….  So I turned to the only other group I could think of, the PF community on Facebook.  As always, they came through for me.  But what I found most interesting was how few of them really thought about the future.  They are a group that truly lives in the moment.  The gist of their advice was to make my plans — sign an advance directive, factor mounting medical expenses into our financial plan — and then focus on enjoying what I can while I can.

It’s good, sound advice.  But as I head into the third month of my medical leave, and approach the one-year anniversary of my diagnosis, I find myself mired in thoughts of what’s to come.  A year ago, I could sit without supplemental oxygen and needed just 3 LPM when I was up moving around.  I didn’t use it at all at work, other than walking to and from the parking lot.  Now, I use twice that amount sitting, and pump my Os to 8-10 LPM moving around. I’ve been in the hospital twice in the past 6 months.  Making dinner leaves me feeling achy and breathless.  What’s next?

Recently I read a book called The Long Goodbye by Meghan O’Rourke, a memoir about a woman who lost her mother to cancer.  I read it from the dual perspective of a daughter worried about losing my own mother, and a mother worried about not having enough time to give my children all they deserve before I depart.  At first I thought about keeping journal for them… but then I realized that’s a ridiculous idea.  My kids are teens — they need me, not stilted words of wisdom to refer to once I’m gone.  So, I am concentrating on being as present for them as I can during the moments we spend together.  That’s what they’ll keep with them anyway — they’ll remember the times we rolled around on the floor together, laughing uproariously at a stupid joke no one else thought was funny.  They’ll remember the feel of the pillow on their cheek, the warmth of my hand on their back as we lay talking about what happened that day.  They’ll remember how deeply they are loved and how completely they are cherished, because that’s what I remember when I think of my mom.  Life is in the moments, and those moments are more precious that ever.

And so after reading books, sifting through comments and listening to advice from a range of sources, I realize my kids are my “future”.  My love fills their hearts, my quirky sense of humor inhabits their smiles, my courage strengthens their resolve to face each day.  I don’t know how much time I have, but I do know the only way to make it count for something is to make it count for them.

TIP:  Supplemental oxygen can be really hard on the mucous membranes of the nose and sinuses.  I’ve discovered that Ayr nasal saline gel really helps. Apply it with a Q-tip to the inside of your nose to help keep things moisturized and avoid nose bleeds.  Ayr nasal mist helps relieve sinus headaches brought on by oxygen use as well.