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

Wednesday, July 04, 2007

Too much information

I've been trying to think of something clever and blogworthy to say about my bronchoscopy last week, but there's really not much there to work with. They went in, they looked around, they took some samples, I went home. That pretty much covers it. I won't know for sure what the results are and what they might mean for at least a few weeks yet, as my doctor left town for an extended vacation immediately after performing my procedure, no doubt thanks to the huge windfall he reaped from my insurance company. I expect to at least get a postcard.

However, before donning his Serengeti polarized Lucca sunglasses and jetting off to the French Riviera, he did share with me that my CT scan this time was virtually identical to that done in May of 2006, which indicates that my pulmonary fibrosis has not advanced further into my lungs in over a year now. The implications of this are unclear, as this leaves me in a state of medical limbo with no established course of treatment. While there's no denying that this is fantastic news, it's also a bit disconcerting in that it calls into question the entire diagnosis of IPF; one of the defining hallmarks of this disease is its insidious progression over time. Of course, the sixty-four dollar question here then is "if it's not IPF then what the hell is it?" and my doctor is hoping that the lung samples he obtained will shed some light on this puzzle.

Any number of things can cause scarring of the lungs, and he did say that from all appearances, it looked to him as if I experienced some "event" which damaged my lungs and then just ... went away. However, this means that at some point during the last five or six years I would had to have inhaled something vile which would have caused me considerable distress, and would surely have been something I would remember -- and I can recall no such experience. Another less likely possibility is that I was exposed to something in my environment slightly less toxic but for a longer period of time (asbestos? mercury? sulphuric acid? Republicans?) to where I might not have noticed the gradual irritation. As I say, hopefully micro-examination of the samples of lung tissue removed this week will give us a clue.

The upshot of all of this is that if my condition continues to remain stable, there's a chance that I will NOT need to have a lung transplant after all, and I have seriously mixed emotions about this. Transplantation is and always has been a treatment of last resort, when there is no other option for survival. Although there have been tremendous advances in medical science even within our own lifetimes, major organ transplantation is still fraught with imperfections and complications. Because the body will always consider the transplanted organ to be an invading foreign object (or, the way a nurse once described it to me, the internal cells say to each other, "This is not me! Attack!"), the immune system must be suppressed to the point where even the slightest little infection or virus could be life-threatening. Even under the very best of circumstances, typical survival after a lung transplant is perhaps five to seven years, although a few individuals have done much better, getting ten years or more. If the doctors think I have a good chance to live at least that long without it (at one low point in 2004 my remaining life expectancy was estimated at 18 months), then I will be more than happy not to face what has until now been the looming specter of this complicated and risky surgery.

But on the other hand, what has inspired me and kept my spirits up as I have battled IPF over the last several years is the thought that once past the recovery stage, a transplant would allow me to do the things I love that I can no longer do with ease. I've said this before, but what I miss most is my ability to do those simple little things I used to take for granted, like riding a bike or washing the car, not to mention the esoteric stuff like walking down a beach at sunset. The idea that I will be chained to this oxygen hose for the rest of my natural life is a bit depressing, but I am coping with it by realizing that this is buying me valuable time. Who knows what kind of breakthrough procedure or medication might emerge in the next few years? The Holy Grail would be the discovery of a way for the lungs to regenerate tissue and "heal" themselves, perhaps using stem cells which could theoretically adapt to whatever part of the body was required. However, this is not likely to happen any time soon, thanks in large measure to George Bush and his continuing veto of funding for this area of medical research. Instead, he would prefer that surplus embryonic tissue be simply dumped in the trash as it would be anyway. I can't tell you how much it galled me a year ago when Shrubya stood at the White House on a platform surrounded by cooing babies allegedly "adopted" from frozen embryos and claimed that stem cell research "would support the taking of innocent human life in the hope of finding medical benefits for others. It crosses a moral boundary that our decent society needs to respect."

To this I say "bullshit", but perhaps a more civil and articulate response came from Illinois Senator Richard J. Durbin who said, "Those families who wake up every morning to face another day with a deadly disease or a disability will not forget this decision by the president to stand in the way of sound science and medical research."

That sounds a whole lot better than "bullshit," but it means exactly the same thing. We are one of those families.

Whoops, got off-topic there for a bit, sorry! I will say that my procedure last week was about as pleasant as it could possibly be considering the circumstances, and dare I say, almost enjoyable. It's an unfortunate fact that over the last few years I have become somewhat of a connoisseur of hospitals, having been treated, poked, or prodded in at least six major medical establishments since 2002. Last week's experience at St. Luke's in Houston was one of the best. Check-in paperwork was smooth, fast, and efficient. The nurses treated me like a VIP. The mutual respect and camaraderie between my doctor and the support staff in the operating room (at least, as best as I can remember before the Versed kicked in) was obvious; everyone present was good-natured -- dare I say "saucy"? -- yet extremely professional. It was about as much fun as one can have under anesthesia (me, not the staff, that is). The doctor chatted with Mrs. Toast about the results for a good fifteen minutes afterwards and I was released in short order. They even gave me a lollipop. What more can one ask from a medical institution?

In fact, it was so much fun that I am going back tomorrow to be probed again, only this time from the opposite direction. I will spare you the details, my friends, except to say that this procedure has safely been performed on millions of ordinary people, and by "ordinary people" I mean "those who have reported being abducted by aliens", only without the "prep".

"Prep". That's such a friendly, innocent-sounding word isn't it? Let's all say it together: "prep". Just rolls off the lips, almost like a kiss. So simple and unoffensive, like something you'd do for an exam, a business meeting, or a vacation. Just four little letters.

Which give no freaking clue as to the horror that will follow.

Indeed, there is so much vast potential for mining boffo material from this event, that surely more than one stand-up comic has based an entire 30-minute routine around it. But this ain't the Improv here, folks.

Nevertheless, it's been recommended that I do this asap, so I'm going to get it over with. While y'all are enjoying your traditional Fourth-of-July family backyard BBQ today, think of me and the liquid diet I will be on, and the ... well, maybe it would be better if you didn't think about it at all, actually. I will promise you this: even though I finally solved my digital camera conundrum and bought a brand-new supercool Fuji Finepix (more about that in a later post), I will not, I repeat, will NOT pull a Katie Couric on you and post full-color, er, "interior" photos of the procedure afterwards. Some parts of Mr. Toast are just too frightening to be seen in public.


Happy 4th of July!



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