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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By The Numbers: Pulmonary Fibrosis

Pulmonary Fibrosis is an incurable disease that causes progressive scarring and stiffening of the lungs.  Over time, it becomes harder and harder to breathe as the lungs’ ability to transfer oxygen into the blood stream declines.

Today is Pulmonary Fibrosis Awareness Day.  It’s also the one-year anniversary of my diagnosis.  Statistically, I have a 50/50 chance of living four years past my diagnosis.  And after 12 months of living with and fighting this disease, I’m beginning to understand that statistic more clearly.

A year ago, I got winded walking up steps or an incline — without using oxygen.  Now I get winded getting up from a chair or brushing my teeth with oxygen.  Last fall, I made it to  most of the high school football games to watch my daughter perform with the marching band.  This year, I will probably attend one… and that will require careful planning and two portable liquid oxygen tanks.  Both of my kids have colds right now and I live in fear of catching it.  No hugs. No kisses.  And every time they sneeze or cough, I fight the urge to recoil  It wouldn’t take much to put me back in the hospital.

But there is hope.  In the past two months, two of my PF friends on Facebook have received new lungs and a second chance at life.  I hope that one day, I will receive that chance as well.  So, in the spirit of building awareness of this dastardly disease, I’ve compiled a few interesting facts:

200,000             Americans who have pulmonary fibrosis

48,000             New diagnoses each year

40,000             Annual deaths (the same as breast cancer)

1              Currently available treatment – lung transplant

ORGAN TRANSPLANTS:

79         Number of organ transplants performed daily

18          Daily deaths among people waiting for a transplant

          Potential number of lives saved and/or changed by a single organ donor

1           Number of people added to the transplant waiting list every 10 minutes.

Pulmonary fibrosis isn’t pretty.  But you can help. Firstly, don’t be so quick to judge when you see someone using oxygen.  I can’t tell you the number of scornful looks I’ve gotten from people who assume I have COPD brought on by a lifetime of smoking — usually followed by angry whispers that I got what I deserved.  My disease is idiopathic, which means even after lung biopsy and dozens of blood tests, we still don’t know what caused it.  And pulmonary fibrosis is very different from COPD!

Secondly, you can become an organ donor.  It takes five minutes and you can sign-up online or at your local driver license bureau.

And finally, you can support ongoing research into the causes, treatments, and one day a cure, by donating to the Pulmonary Fibrosis Foundation.

RESOURCE:

PF Warrior Bill Vick curates a wonderfully informative newsletter on Scoop.it  Check it out!

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.