Saturday, March 24, 2007


I have been spending a lot of time in Guaymas lately, for a chest X-ray, blood test and a doctor visit. My doctor doesn’t speak English so our friend from the Ranchitos came along to translate. For the past three mornings I've been coughing into a cup, and delivering the resulting sputum samples to a lab.

Dr Ocampo looked at my X-ray, heard about my history and told me I apparently have Pulmonary Fibrosis, or PL. My particular brand of PL is called Idiopathic because it has no known cause. Something in the air...

I found an online brochure for PL patients from the Pulmonary Fibrosis Foundation that really made my day. The phrases “incurable” and “fatal disease” got my attention, along with the reassuring note that patients diagnosed with PL have an average life expectancy of three to six years.

I have been short of breath and, especially when in San Carlos, have been coughing a lot since November. When I take a deep breath, I feel a burning sensation deep in my lungs. This hasn’t gone ignored--before we sailed south in January I saw another doctor who decided I had an allergy and prescribed Claritin and a pricey inhaler. Wrong.

We took off on the boat and although I had more than the usual amount of seasickness, bruised ribs and a bite that made my foot swell up, during the two months at sea I seldom coughed. The day we got home, I had a violent coughing fit.

Twelve years ago we were living in rural Petaluma, CA across from a “free range” chicken farm, when identical symptoms landed me in the emergency room at Kaiser. I spent two weeks in the hospital including a couple of days in ICU, after months of misdiagnosing and misprescribing of various antibiotics. X-rays didn’t show much, but then they don’t in about 15% of the cases of PL. I had seen a series of doctors, as my regular physician was out of town, and none of them took me very seriously until one glanced at my chart and realized I needed my blood checked for oxygen. It took three months of oxygen and Prednisone to get back to semi-normal, after a lung biopsy showed I had scarring damage to my lungs. Information about the cause and the future prognosis was vague to nonexistent.

This time I have a name for what ails me, something to Google, learn about, fret about and wonder about. A mixed blessing, I suppose.

Pulmonary Fibrosis is the name for a group of more than 300 diseases all involving the hardening of the alveoli, the tiny air sacs in the lungs that provide oxygen to the blood. Dr. Ocampo showed me ghostly white threadlike patterns at the bottom of my lungs on my XRay, which he said indicated developing fibrosis. Imflammation caused by exposure to certain kinds of dust, farming chemicals, asbestos, rotting vegetation can lead to PL, or it can be genetic. It's not contagious.

Some people with PL get "clubbing" of the fingertips, which may make it more difficult to hit those tiny buttons on their cellphone. I'm watching mine for signs...

So I’m back on Prednisone, or a version of it called Meticorten--two a day for five days, then one a day for three weeks. I looked up side effects of Prednisone on the Internet and was tickled to find one of them is “Inappropriate Happiness.” I also can get depressed, sweaty, dizzy and weak. My eyes may bulge, my hair may grow faster and I may lose sexual desire. I may also develop a cough, but since that’s already the case how would I know?

I also got two inhalers, one of which, called Spiriva, Ocampo says I must take “permanently.” Also a ghastly-tasting cough syrup called Histiacil I took once and haven’t touched since. This stuff isn’t just nasty at first taste, it has layers of vileness that continue after you’ve swallowed it, shuddering and chased it down with a glass of water. I know Dr. Ocampo will be disappointed in me, I know I need to get out that spoon and gulp down my Histiacil once a day. Maybe I’ll get to it today, during my next attack of inappropriate happiness.

The good news is that all these tests, the doctor and the meds, have so far cost me less than $250, without medical insurance. I wouldn’t want to even guess what it would cost me in the States.

Stay tuned.


Nancy said...

I don't even know what to say...except that happiness is good, and imappropriate happiness sounds fine to me!

But the mind is an amazing thing, and you do have a lot of power in how you create your future.

I'll be sending you thought-waves of strength, and support, and positive energy to help you with this challenge.

You'll have to blog about what inappropriate happiness is like...maybe laughing when you burn dinner? Let us know!

Jonna said...

That's tough to hear. But, having a name and a reason can be empowering and it sounds like you are finally getting good medical care.

Hey, bring on that Inappropriate Happiness! It sounds like the perfect medicine to me. In fact, send a little my way if you have too much.

Lots of virtual love coming to you from down in the Yucatan.

1st Mate said...

Hola Nancy and Jonna
As I begin to wrap my mind around this new development I'm grateful for your support. Maybe that'll be the source of happiness, and I wouldn't call that inappropriate at all.

Brenda said...

Thinking of you, take care and TAKE YOUR MEDS.

Mary said...

Your blog has helped me greatly. I'm sure this is what I have. We have raised chickens for a year now and before that we found fungus and mildew in a mulch on our property that I was shoveling unmasked (like a dope). I have been sick for 4 months.
Doc just started me on the "inappropriate happiness" pills 3 days ago. I don't let them sit on my tongue for long as they are gross tasting. About to switch to a spoonful of honey to chase them down instead of water. That cough med sounds yummy. :-P
My doc is still chasing symptoms, but your words has given me amo.
I don't know you, but I'm really grateful I stumbled upon your blog. cheers -mary in California