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!

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2 thoughts on “By The Numbers: Pulmonary Fibrosis

  1. Lori,
    Jack Linn passed this post on to me. He was my college roommate. Thank you for sharing your thoughts and experiences so clearly and openly. I had heard of Pulmonary Fibrosis, but knew nothing about it. Your post was very enlightening.
    Jack asked for prayer – “Lord, You are the Great Physician. You heal through natural means and at times through supernatural means. Would You be gracious to Lori in this situation by guiding her to the best earthly physicians who can address her illness – using them as effectively as is naturally possible. And, would You step in directly in a supernatural way when those other means reach their limit. Please encourage Lori’s heart, uplift her spirits, and bring healing to her body. And use Lori in positive ways to help and encourage others.”
    God bless.
    George Sarris

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