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

Saturday, March 31, 2007

The good news would be the lack of bad news

I've been in the hospital in Houston again this week for my quarterly ritual of being poked, prodded, and stuffed into an airtight box while I blow into tubes. It's so much fun, I just can't tell you. While there's been some minor variation in my pulmonary function numbers, the one that's the most general indicator of the state of my health (FVC, or Forced Vital Capacity) has remained steady at 57%, exactly where it was when we went through this procedure three months ago. The fact that I have not declined further since then is great news, considering that my doctor had been concerned that my December numbers, which had dropped from the previous summer's high of 61%, might have indicated that I was on the verge of cratering. A rapid falloff in lung capacity after a period of relative stability is not uncommon in Pulmonary Fibrosis patients. Had I continued to drop below his "magic number" threshold of 50%, I would right now be anxiously eyeballing a beeper, expecting a call to come at any moment summoning me to report to the hospital to have my lungs transplanted. The fact that I don't have to worry about this for at least the next three months is a tremendous relief.

But at the same time, it also means that I will continue to remain stuck in this limbo state of not sick enough to be transplanted, yet not well enough to carry on most normal activities. As long as I am sitting still and not exerting, I feel fine ... and in fact at these times it's easy for me to forget that there's anything wrong with me at all. However, once I stand up and start moving around, I am quickly reminded that pulmonary fibrosis has rendered my lungs unable to efficiently do their biological job of exchanging carbon dioxide for oxygen in my bloodstream. I become severely out of breath after just a few seconds, like someone in normal health would get from running around the block. It's only with the help of supplemental oxygen that I am able to do much of anything at all. Like anyone else with a serious illness, I go through phases in my struggle to deal with it. Sometimes I'm grateful that medical science allows me to live with a condition that would probably have killed me outright within a year or two had I been born a century ago. Other times I feel resentful to be chained to this fucking oxygen hose. But fortunately, the good days overwhelmingly outnumber the bad. I can get out and about OK if I wheel my O2 tank along with me, and I have decent mobility with my little blue Buzzaround scooter (in fact, it can be actually fun to ride).

But I have to confess I'm getting tired and frustrated with remaining in limbo; after two years of this, part of me wants to get on with the transplant surgery and get it over with. With any luck, I will be able to regain somewhat of a normal life again post-transplant. I've met other patients who, several years after their surgery, say they feel better than they've ever felt before, which makes me hopeful. The idea of being able to do the simple things I love again -- travel, walk on the beach, go dancing, ride a bike -- fills me with optimism, so I think "all right, cut me open and let's get this show on the road."

Of course, once I start really thinking about it, how one in ten transplant patients don't make it out of the O.R. alive, how the average post-transplant life expectancy is only about five years, it scares the crap out of me. Medical science makes amazing discoveries every day: could lung tissue someday be regenerated, or grown externally to preserve the DNA structure in such a way that the body's immune system doesn't try to expel it as a "foreign object"? (Rejection is the single-most common reason for organ transplant failure.) Who knows what miracle "cure" could come along in the next year or two that might even eliminate the need for the surgery? With that in mind, the longer I can postpone it the better.

So in the meantime I'll continue to wait, follow my medication and pulmonary rehab regimen, and try to stay as healthy as I can. I'll remember to keep a positive attitude, and do my best to enjoy life ... three months at a time.



  • At 3/31/2007 11:18:00 PM, Blogger Daisy Martin said…

    Sorry to hear you've been in the big house. I sort of know what you feel like. I have aortic stenosis which requires open heart surgery to replace my mitral valve with a mechanical one. Fine, except the heart surgeon won't do the operation until I am "severe". I have been "moderate to severe" since July 2005. I just want to get it over with so as you say, to get on with my life. But no, the doctors want to wait till the last possible moment before doing the deed.

    I have a theory about the reasons my dr and your dr work this way. It is so they will look like heroes. I mean, come on, if they do the op now we are grateful but we weren't at deaths door. If they wait and do it when we are at deaths door then they come out as the hero that saved ou lives just in the nick of time.

    yes, I've thought about this far too much.

  • At 4/01/2007 10:02:00 AM, Blogger jbwritergirl said…

    Hang in there. Like the old saying goes...'Every dog has its day'.

  • At 4/02/2007 11:27:00 AM, Blogger SupaCoo said…

    Keep thinking postive, Toaster. My papa is kind of in the same boat, but tries as hard as he can to do things as best as he can. And put off that lung transplant as long as you can, in my humble, un-doctorly opinion.

    IPF Sucks!

  • At 4/02/2007 03:35:00 PM, Blogger Marie said…

    sorry to hear about your medical condition. hope your health will improve in the coming days. hang in there!!! you are still blessed somehow because you have access to the best medical care there is available. i will be praying for you, continually.

  • At 4/02/2007 06:49:00 PM, Blogger April said…

    I think that your attitude is excellent for someone who has all that shit to deal with, and if you have bad days here and there, you have all the right in the world to feel overwhelmed and what not... I can't begin to imagine what if feels like to have to WAIT on something so important! Hang in there, your time will come and you'll be walking on any beach you can get to! Real question is which one first!

  • At 4/02/2007 06:53:00 PM, Anonymous Anonymous said…

    Glad you're still holding your own and still as determined as ever to fight the good fight. BTW - today is National Reconciliation Day. Anybody with whom you'd like to mend fences?

  • At 4/03/2007 03:49:00 AM, Blogger sumo said…

    Yes...do try to keep that positive attitude...in the long run it will be better for your health. Good luck to you.

  • At 4/03/2007 11:28:00 AM, Blogger Mr. Toast said…

    Thank y'all - your encouragement helps a lot. I'm hangin' in there!

  • At 4/04/2007 12:27:00 PM, Anonymous Anonymous said…

    I have pulmonary fibrosis also. My lung capacity is approx. 47% and I was on a waiting list for 2 years before being taken off due to a high level of antibodies in my blood that would cause rejection. I pray that all goes well with you. I'm just believing God for a miracle. I am so frustrated and tired of this whole situation. I've been dealing with this for almost 5 years. Again, I'll pray for you. Tamra

  • At 4/04/2007 03:05:00 PM, Blogger Mr. Toast said…

    Thanks, Tamra ... I'll do the same for you. I'm glad you found my blog. Would you consider writing to tell me a bit more about your experiences? Maybe we could share what we've each learned about this disease, and form our own little support group. My address is mrtoast (at) suddenlink (dot) net.

    Like Supacoo says, IPF sucks!

  • At 4/04/2007 07:13:00 PM, Blogger Sphincter said…

    You're too cool, Mr Toast. I know that you're helping others facing similar situations, and that's so great.

    You should consider forming a gang with other Buzzaround Scooter users. You guys would kick ass on all those Harley jokers. We know who the REAL tough guys are.


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