lungs

My lungs are trashed.  Sam sounds upset. I ran my PFTs, my pulmonary function tests, this week. The young tech asks, " you want a copy? "   "Sure, " I say, immediately regretting my decision. I study the results. I have  the lungs of an 80 year old, and not a young 80, either. Shit.  I  am  missing a part of my right lung, which now sits in formalin in Hartford hospital, but that doesn't explain my  appallingly low DLCO.  When we are born, our lungs are sparkling clear membranes  of Saran wrap. As we age,  the membranes thicken and  scar. This effect is measured in  a dlco, a measurement of how permeable our lungs are  to oxygen.   My DLCO is 60%.  My body is struggling to pull oxygen out of the air.

I rationalize.   I am anemic. Anemia messes with the result, but  even I know  this is bad.

 I'm getting ahead of myself. I really like Sam. He's my pulmonologist . My go- to lung guy.  He's smart,  smarter than I. He realized the suddenly appearance of a clotting disorder in my blood reflected my donors' disease, not mine. Smart guy.  A year after my transplant, I developed shortness of breath, chest pain and a swollen  leg.  In hindsight, the diagnosis was stupidly obvious, a life threatening blood clot in my leg that had lodged in my lung. I called Sam and told him I was having  a reaction to my antibiotics.  He agreed and changed my medication. I struggled all week,  skiing on vacation and all the while feeling knifes at my chest and swelling in my right leg. I eventually crashed.  A stat CT told me what I should have known,  I walk the earth these days through  blind luck.   I was rushed to  surgery,  a septic embolus festering in my lung.

Doctors who treat themselves have a fool for a patient. Sam has always felt bad about my near death experience.   I am embarrassed, of course, I blame myself for calling Sam and spinning a story to make "antibiotic reaction" a plausible  diagnosis. Sam should have said " get to an ER ASAP.. You're an idiot."

But he didn't.  I lived because others didn't want me to die.

I lived because athletes don't die, despite themselves.

I texted Sam with my PFT results.  "They're  bad " I wrote, "but I am anemic."  Idiot. Spinning another excuse.

Sam called back...."I don't want you to panic, " he begins.  "I think it's probably GVHD. I don't think we need to do anything. Why the hell did you get pfts? Are you sick?"

No. Not sick. I blog from the hotel Northampton, 50 miles by bike from west Hartford. Tomorrow we'll bike home. A century weekend, 100 miles on bike. Numb butt and ulnar neuropathy my constant companions.

This begs the question. Why get tested? It raises a key medical fact that escapes those not in medicine.. Never get a test if you won't act on the results. My son wanted to test  his chromosomes. He wants to know his risk for heart disease.   "What would you do if you tested positive? " I ask. " I'd exercise and eat right, " Jeff  replies. "You need a 1000 dollar test to tell you to eat better?"

So, why get PFTs?

Because I am taking pain medications, that's why.

When the GVHD flared in January, my mouth was filled with broken glass. I needed

 steroids and pain meds to control the misery.   Now I'm better. I'm almost off the steroids, almost  off the pain meds. The last time saw my oncologist , he admonished me to stop the pain meds.  This is tough. Very tough. I did this last year and the resulting withdrawal was among  the worst episodes of my private war on cancer. I need to stop, but I need to take my time.

In my disturbed state, I decided  the best way to obtain another month of pain medication was to be an ideal patient.  Read  "co operative. " Read "passive" ok, Ted, I thought, I'll be a good boy and get my PFTs,  and you'll renew my pain medication for another month.

 This is crazy, I know.

It's what pain medications do, they make us irrational.

I could have said "Ted, if my PFTs are abnormal, what are we going to do?" It's a important point. What would/do I do?  Lung transplant. Great. I'm fighting GVHD now. Lung transplantation requires a lifetime of immunosuppressives.   The better question  would have been "are  you having symptoms of lung disease? " If not, then I don't need testing.

Sam is apologetic.  "Don't worry, it will be ok.  Please don't obsess over this" he knows Cyn and me too well.

I laugh " it's a bit late to obsess,Sam. This isn't my first rodeo."

Cyn and I biked to Northampton last fall. I repeatedly fell off my bike, weakened by steroids and disease. I lay on the ground every 10 miles, heart racing, lungs pounding.  This trip is joyfully  uneventful. We're having a lovely time. We had dinner with friends  and attended a concert. Breathing is easy. Easier.

I stare into a hotel room mirror. My face is almost back to normal, I no longer have the steroid induced moon face.  I'm a little gaunt now, and in that gauntness I see the 80  year old I was certain  I'd never be.

My lungs seem functional, they drove me 50 miles today with nary a gasp or wheeze.

Out of sight, out of mind. I remember an old  translation program. We'd enter  a phrase in English, then translate it into Spanish, then back to English.

Once I typed in "out of sight, out of mind"

The twice translated phrase came back

"Invisible lunatic"

That sums  up medical  testing. Following changes that have no remedies,  running tests for troubling but untreatable  medical problems, makes one crazy.  Ignoring obvious symptoms that warn of impending doom is lunacy. It's OK Sam, it's my fault, not yours.'