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

Monday, October 17, 2005

Introducing the elephant in the room

I have a terminal illness.

There, I’ve finally said it. I’ve known that I wanted to write about this since I started my blog, but have put off doing so because I wasn’t quite sure how to bring it up or how to frame it. As you might expect, this fact has become the hub of my life since I was diagnosed with Pulmonary Fibrosis in April of 2003, but I don’t necessarily intend for it to be the focus of this journal. My illness does not define who I am or nullify my other thoughts and feelings, and that’s what I want to write about – everything: the world as I see it. I’ve asked myself, and if you’re reading this you may be wondering, why I would want to share such intimate details of my life with complete strangers in a public forum like this. I want to be careful to not be all “woe is me” or expect anyone to feel sorry for me. Lots of things may deserve your pity, but I’m not one of them; there are plenty of people on this planet in much worse shape than I am. Fortunately, I have good medical care, close friends and relatives who are helping me to cope with this, and (I hope) a positive attitude towards whatever the outcome may be. But it also occurred to me that one way I might be able to make the best of a bad situation is to express my thoughts and feelings so that anyone else who may be in this position, or know someone who is, can have another frame of reference to perhaps better understand their own feelings. It’s not that I have any expectation of being either inspirational or profound, but as anyone facing adversity realizes, there is strength in numbers. I hope my experiences, as they unfold during the journey I am taking, might be useful to someone else. If even a single other person finds something I might write to be in any way helpful, it will serve to provide deeper meaning to my own life. I’d like to believe that maybe, just maybe, there is some reason for all this.

In the first entry on this topic, I’d like to begin by providing a little background information. Pulmonary fibrosis is a specific type of interstitial lung disease in which a process of inflammation and scarring (fibrosis) occurs in the alveoli (air sacs) of the lungs. This fibrosis results in permanent loss of that tissue's ability to breathe and carry oxygen. Air sacs, as well as the lung tissue between and surrounding the air sacs and the lung capillaries, are gradually destroyed by the formation of scar tissue. While some specific lung irritants such as asbestos have been identified as being a source of this disease, the vast majority of cases – mine included – are of unknown origin and are therefore termed idiopathic pulmonary fibrosis. There is no known cure. The life expectancy following a diagnosis of IPF is two to five years. While the prevalence of IPF in this country is relatively small, it is unfortunately growing at an alarming rate. Some of the more well-known sufferers include Jerry Lewis, Evel Knievel, Marlon Brando, Gordon Jump (TV’s "Lonely Maytag Repairman" and the general manager on WKRP in Cincinnati), Sam Phillips (legendary owner of Sun records), conservationist-philanthropist Laurance Rockefeller, and former Texas Governor John B. Connally. Approximately five million people worldwide are afflicted, about 200,000 in the USA. Of these, roughly 40,000 expire annually. (Source: Pulmonary Fibrosis Foundation)

Currently, there is no effective treatment for IPF. Corticosteroid drugs (prednisone) are traditionally prescribed, but only about one-third of those given the medication will respond favorably to it. Even then, their main effect is to slow, but not stop, the progression of the disease. There are some experimental medications now in clinical trial, but their effectiveness has yet to be determined. Lung transplantation remains the only other alternative, but this is a risky path even under the best of circumstances. Only a small percentage of those who apply will meet the initial criteria, and many people die each year during the long waiting period for an organ to become available. Rejection of the donated lung(s) is a significant problem for those who undergo the surgery.

In February of this year, I went to Houston’s Methodist Hospital to begin the process of evaluation for a lung transplant. A seemingly endless series of medical tests later, I have yet to be approved to be placed on the waiting list, but the chances of this happening are looking favorable. So far, nothing has been found to exclude me and the tests have revealed that other than my lung disease, I’m in pretty decent shape. I am hoping that the evaluation process will be concluded and that I'll be listed by the end of the year. Once that happens, the wait time until “the call” comes is impossible to predict. It is likely to be six months to a year, but there's no telling. I have to be prepared for it to happen at any moment. Even if the surgery does take place, my survival odds won’t improve dramatically. There is roughly a one in ten chance that I won't make it out of the O.R. alive. Survival rates drop by about ten percent each year after that, and few people live longer than ten years after lung transplantation.

So, I've had to concern myself with the very real possibility of death – perhaps in as soon as under a year, if surgery does not go well. It has not been an easy thing to contemplate, and I’ll save my thoughts on that subject to write about here another time. Thank you for reading so far.

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4 Comments:

  • At 10/17/2005 08:20:00 PM, Blogger Brandi said…

    Good post Mr. Toast, you are an inspiration!!!

     
  • At 10/19/2005 07:55:00 AM, Anonymous casey1968 said…

    The secret of life is enjoying the passage of time
    Any fool can do it
    There ain’t nothing to it
    Nobody knows how we got to
    The top of the hill
    But since we’re on our way down
    We might as well enjoy the ride

    The secret of love is in opening up your heart
    It’s okay to feel afraid
    But don’t let that stand in your way
    ’cause anyone knows that love is the only road
    And since we’re only here for a while
    Might as well show some style
    Give us a smile

    Isn’t it a lovely ride
    Sliding down
    Gliding down
    Try not to try too hard
    It’s just a lovely ride

    Now the thing about time is that time
    Isn’t really real
    It’s just your point of view
    How does it feel for you
    Einstein said he could never understand it all
    Planets spinning through space
    The smile upon your face
    Welcome to the human race

    Some kind of lovely ride
    I’ll be sliding down
    I’ll be gliding down
    Try not to try too hard
    It’s just a lovely ride

    Isn’t it a lovely ride
    Sliding down
    Gliding down
    Try not to try too hard
    It’s just a lovely ride

    Now the secret of life is enjoying the passage of time

     
  • At 4/14/2008 06:37:00 PM, Blogger Kiwi said…

    I have been investigating the off label prescription of actimmune for IPF suffers. Where you prescribed this out of curiosity?

     
  • At 4/15/2008 01:21:00 AM, Blogger Mr. Toast said…

    Kiwi:

    Thanks for your comment. Yes, I was indeed prescribed Actimmune for my IPF and was on it for about six months. To say "things did not go well" would be a major understatement. If you're looking into this, surely you know about the action by the federal gov't against InterMune for off-label promotion, which is one reason I'd rather not discuss too many details in public. However, if you'll email me privately (mrtoast AT suddenlink DOT net) I'll be glad to answer any questions you might have.

     

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