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

Thursday, May 25, 2006

Confirmed: I am a freak of nature

I am a medical mystery, wrapped in an enigma, surrounded by a conundrum; I know this because my pulmonologist has told me so. Somewhere in Houston, perhaps at this very moment, various medical professionals are scratching their heads, consulting research journals and discussing with their peers the unexpected good news that I have continued to show a very slight improvement. My pulmonary function test results from this week were up about 15% from the last similar measurements observed in December 2005.

While this is great news for me, and I should probably just accept it at that and let it go, the greater impact of this development is unclear. It's very unusual for anyone with Idiopathic Pulmonary Fibrosis (IPF) to show any significant improvement. There is little disagreement in the medical community that pulmonary fibrosis is a terminal illness, a view supported by the clinical histories of thousands of IPF patients over the last twenty years or so. Data shows that the overwhelming majority of those diagnosed with IPF who do not receive lung transplantation will die within two to five years. While pulmonary function test results may bounce around slightly from month to month, the slow and continuous deterioration in lung capacity over the long term eventually results in respiratory or cardiac failure due to the inability of the lungs to keep the blood sufficiently saturated with oxygen. For someone to show a continuous improvement (albeit a very small one), as these latest results indicate, is virtually unheard of.

There are several possible reasons for this. The most obvious theory is medication: I am enrolled in a clinical trial of an experimental drug called pirfenidone, and if it is in fact working, it could explain the improvement. This was the reason for my visit this week to "Dr. M.", the pulmonologist who is supervising my participation in this program, and the one who conducted these tests. However, there is no way to verify this theory at present. Although initial results have been encouraging (including a similar 2005 study in Japan), this trial in which I am enrolled is ongoing and results won't be analyzed and published for a couple of years yet.

Another hypothesis is that I was misdiagnosed in the first place, and I could have something other than IPF. There are a number of other conditions that can result in scarring of the lungs, and while most of the obvious ones were ruled out in my case, something else as yet undiscovered could be responsible. To investigate this more thoroughly, Dr. M. and I have made the decision to biopsy a suspicious section of my left lung in about a month or two, so I will have yet another exciting hospital visit to look forward to.

The next immediate step is that I'll meet with my lung transplant doctor ("Dr. S.") on June 8th, and he will make the decision then whether to keep me on standby for another three months, or change my recipient candidate status to "active" and proceed with the transplant surgery as soon as a suitable donor lung becomes available. Given these most recent results obtained by Dr. M., however, it seems much more likely that we will continue with the wait-and-see approach for at least a little while longer. Fortunately, even though Dr. M. and Dr. S. work for different competing hospitals under separate administrative systems, they are consulting and cooperating with each other, so I'm getting the best of both worlds.

Finally, another possible explanation that cannot be ignored is the chance that I may have been blessed by a small miracle. For this case, I have a modest band of supporters to thank from the bottom of my heart, including the readers of this blog. Please know how much I appreciate your prayers and well-wishes, you guys; never underestimate the healing power of love.



  • At 5/25/2006 09:20:00 PM, Blogger Max and Me said…

    i absolutely do believe in the power of love. :>)

  • At 5/25/2006 10:48:00 PM, Blogger April said…

    congrats, Mr. Toast! That is such terrific news! I almost started crying when I read that because I was so happy! (or maybe its the pregnancy hormones?!) Either way It sounds like the best news ever! So what will the biopsy of your lung tell you? WOW... 15% improvement in 51/2 months! If praying works... then thats what I'll be doin' because if you can continue to improve at this rate... wow!

  • At 5/29/2006 11:42:00 AM, Blogger Schnozz said…

    No matter what the reason, I'm so glad to hear of any improvement!

  • At 5/29/2006 04:32:00 PM, Anonymous Anonymous said…

    Whatever the reason, the news is really great, and, btw, having known you for 26 years, I can say without doubt or reservation, guy, you ARE a freak of nature.

  • At 5/29/2006 09:00:00 PM, Blogger Mr. Toast said…

    Oh, thank you, thank you, and tha... HEY!


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