"Madame, bear in mind That princes govern all things--save the wind." -Victor Hugo, The Infanta's Rose

Tuesday, September 30, 2008

We're in Kansas, Toto!

As in the Sunflower State, the Heartland, the country's breadbasket, Tornado Alley, Mid-America; more specifically, Salina, Kansas, a mere 100 miles from the geographical center of the United States.

We are paused here overnight in the middle of what seems like endless miles of high plains and wheat fields, at the crossroads of Interstates 135 and 70 as we make our way towards Denver on a road trip that is equal parts vacation and madcap medical adventure. The primary reason for this journey is so that I can be re-evaluated at National Jewish Health, the #1 respiratory hospital and research center in the United States, and possibly the world (the name is a bit misleading, as the facility treats patients of any religion, creed, or nationality).

I first visited National Jewish in 2003; at that time I had just been diagnosed with pulmonary fibrosis by my local doctor, and was having difficulty accepting that this pronouncement indicated I had, statistically speaking, perhaps another two to five years left to live. Generally, the typical reaction most people have upon being informed that they have a terminal illness largely follows the five stages of grief: first comes shock, then denial and anger. I managed to experience all three simultaneously, it seemed; not only was I stunned and in disbelief, but man, I was pissed. How dare my doctor tell me that, and WTF does he know, anyway? I decided that he must be wrong, and became determined to be seen by the best professionals in the field, hoping that their greater knowledge would enable them to give me more favorable news. Alas, after a week in Denver being subjected to virtually every medical test known to modern science (and one or two possibly left over from medieval times), they essentially confirmed the diagnosis and counseled me that I should consider getting a lung transplant as soon as possible and also, as the saying euphemistically goes, "get my affairs in order", just in case.

This was not exactly the encouragement I had been seeking, but it did confirm the reality of the situation so that I could mentally move past the initial three stages into the next phase ... the dark, smothering, cold and clammy embrace of depression.

Ha ha! I kid. Mostly.

But a funny thing happened on the way to my funeral. Just as I reached the final stage of "acceptance" and began to be OK with it, I started getting better! Whoa! That wasn't supposed to happen, according to the experts. IPF is by definition a progressively degenerative condition, and while the decline may be slow, or (in many cases, unfortunately) horribly rapid, it's nevertheless an elevator that only goes in one direction: down. That my lung capacity went from 78% in 2001 to 55% in 2003 to an all-time low of 44% in 2004 ... and then climbed back to 50% in 2005, peaking at close to 60% in early 2006 (where it has hovered with only minor variation since then), is extraordinary. Something unusual is definitely going on with me, and my doctors at home are not exactly sure what to make of it. So when the folks at NJH called a few months ago to see how I was doing, I jumped at their suggestion that I might want to return to Denver for a five-year followup. Again, we're not sure what additional light they can shed on my situation, but I figure it couldn't hurt to be examined by and consult with the best pulmonary physicians in the country.

So we're on our way to Colorado, spending tonight in Kansas, which extensive scientific research has revealed really is flatter than a pancake. We've laid down about 620 miles today, and have another 430 or so to go tomorrow. I'll have two days of medical tests and doctor visits later this week, then we'll have a free day to explore the sights of the Mile-High City and take in some local flavor, which has come highly recommended by blogger buddy and former Denver resident Supacoo. And like any self-respecting librarian on vacation, Mrs. Toast wants to visit some big-city bookstores. After that, we'll be heading south to beautiful Pagosa Springs, the former home of the in-laws where we spent many a fine Rocky Mountain vacation in years past. Mrs. Toast's brother (whom we haven't seen in several years) still lives there, so we plan to hang out with him for a few days before heading back to Texas. I'm not sure how I'll do with the altitude. Breathing is difficult enough for me at sea level, and Pagosa's 7,200' elevation may be a real challenge. En route from Denver, we'll cross legendary Wolf Creek Pass (elevation 10,800') which should be interesting. I'll be crankin' up my oxygen on that portion of the drive, for sure.

More exciting news, and photos, will follow in this space shortly ... hopefully more scenic than this one:



  • At 10/01/2008 09:49:00 PM, Blogger Hey ScotE! said…

    When you are in Pagosa make sure you go to the hot springs. The Spa has an indoor room where the mineral vapors might help your breathing. The Native Americans used this spot for healing....

    A Displaced Pagosan....

  • At 10/02/2008 02:21:00 AM, Blogger SupaCoo said…

    Kansas and Nebraska can be blown off the map and the country made just THAT much narrower in my opinion.

    I'm very bummed that Pete wasn't in when I visited last week. Apparently he had just gotten back from Greece and was a bit jet lagged (I know the feeling!). Don't confused Patrick (old white guy) with Pete (old Greek guy) but do enjoy the free baby Benadryl... I mean, Alabama Slammer shots. And don't forget the pizza next door! I miss it already...

  • At 10/04/2008 05:03:00 AM, Blogger Paper Tiger said…

    Found your blog in Google search of pulmonary fibrosis. I was diagnosed with it 8/11 and am doing avid research. Please let us know what you find out at the hospital. Your improvement was a bit of sunshine over a dark sea.

  • At 10/04/2008 12:23:00 PM, Blogger Mr. Toast said…


    I'm very sorry about your PF news, but glad that you found this site and that we both might get to know another fellow traveler on this journey. If you'll send me an email to mrtoast (at) suddenlink (dot) net, I'd be happy to reply to you privately in more detail. In the meantime, if you'd like to read everything I've written here so far about IPF without having to wade through the other random crap, just click http://windinthewire.blogspot.com/search/label/ipf.

    Thanks, hope to hear from you.

  • At 10/04/2008 02:09:00 PM, Anonymous Anonymous said…

    We missed each other by a month... managed to stop in Denver coming back from Vancouver just long enough to see my sister-by-heart at the airport. Your scientific research on Kansas was fascinating. Only difference from here it seems is we have more water.


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