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

Wednesday, March 15, 2006

I've been approved! (gulp)

Major news: I've received word from my coordinator at Methodist Hospital that I've been officially approved for a double-lung transplant. Now all I have to do is actually get one - no big deal there. :^)

This is the culmination of a process that started in February 2005 when I first applied to the hospital for the procedure. Since then, there have been many rounds of medical tests and waiting as they put me through the various stages of evaluation. Think of any diagnostic test known to medical science, and chances are I've had it in the last year: x-rays, CT scans, heart stress test and catheterization, barium swallow and GI scan, nuclear imaging, kidney and liver function tests, a brain scan, not to mention being stuck with more needles than a pincushion.

I am very fortunate to have made it to the approval stage. For various reasons, most people who might medically benefit from major organ transplant (including heart, lung, liver, kidney) never get one. In some cases it's because their insurance won't cover it. Other times there may be some disqualifying factor, such as a secondary medical problem that could compromise the outcome of the surgery. Or, the potential recipient could simply be too sick or too old. But in my case, the odds are in my favor: not only do I have excellent insurance, but more importantly, I'm relatively young and in fairly good shape other than for my pulmonary fibrosis.

I am also not unaware of the role of politics in the selection of transplant candidates. Transplantation is very high-profile surgery for hospitals, and their reputation (and more significantly, funding) is highly dependant on their success ratio. Because the organ donor pool is so much smaller than that of those who need the surgery, hospital Boards of Directors can afford to be very picky when it comes to qualifying potential candidates. Thankfully, I fit the profile of someone who has a good chance to live for at least five to ten (or possibly more) years following surgery, and therefore likely to increase the hospital's average survival statistic.

The next thing that happens is ... I wait. At this moment in time, I am considered "too healthy" for immediate surgery. Let me explain: within the last year, the United Network for Organ Sharing (UNOS), who oversees the allocation of donated organs nationwide, has implemented a new system for determining potential lung recipients. A variety of factors are weighed in a confidential formula that results in a numerical value representing, in essence, how sick someone is and therefore how urgent is the need for transplant. Before this scoring system, transplants were conducted on more or less of a "first-come-first-served" basis, where individuals who had been on the waiting list the longest were the first to be offered an available organ. Unfortunately, two major drawbacks -- those who needed the organ most were not always the first to get one, and a waiting time of up to two years or more -- resulted in an alarming number of people who died while on the waiting list. The new scoring system has significantly improved the chance that those in greatest need will get the surgery first, as well as cut the waiting time to a matter of months or sometimes even weeks. While I don't know exactly what my "score" is (and UNOS guidelines won't allow them to tell me), my doctors have said that because I've stayed relatively stable since my initial IPF diagnosis, the number is low enough that were I to be actively listed now, I would probably not get an offer for an organ; there would always be someone else on the list who would need one more.

The chart to the right shows the survival rate for IPF patients. It is not good; my eventual decline is inevitable, and at three years since my diagnosis, I am just now about to enter the critical 50% mean of the curve. But I've now passed all the hurdles for financial and medical qualification, and once my condition does start to deteriorate (I'm being re-evaluated every 90 days), my status on the waiting list will be changed to "active". In this case, even if I were to receive an offer of an organ the very next day, all the paperwork would be in place to actually admit me and begin surgery right away.

And that opens up the door to a new "adventure" all of its own; I haven't even begun to touch upon the surgery itself, the follow-up, the therapy, the drugs, the potential rejection issues, and so much more. It's not something I find especially pleasant to think about, but I'll write more about that later. One step at a time, and this step was more like a giant leap.

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5 Comments:

  • At 3/15/2006 06:12:00 PM, Blogger Janelle said…

    I am very happy for you, even though looking at the chart is pretty scary I wish you the best of outcomes no matter what happends and when you have your surgery I will be in my mind and I will be praying for you. It's nice to have good news about wonderful people.

     
  • At 3/15/2006 06:12:00 PM, Blogger Janelle said…

    I meant to say that you will be in my mind...not I will be in my mind..

     
  • At 3/15/2006 07:06:00 PM, Blogger Mr. Toast said…

    I knew what you meant. :^) And thanks, I appreciate it a lot.

     
  • At 3/15/2006 07:49:00 PM, Blogger April said…

    Congrats on the news. That is a huge step. I understand the logic behind the organ list...give it to the person who needs it the most.. but If you are that person, that means you are pretty sick, and doesn't that mean that the post-op stuff is going to be MORE complicated and dangerous? I just think its weird that you can't get a lung (s) until you are so sick that they don't know if sergery will be successful.

    But I am very excited for you, and hope that your name races to the top of this "list". Its a long journey ahead, but you have Mrs. Toast to help you through, not to mention all of us here in the blog world. :)

     
  • At 3/22/2006 12:28:00 AM, Blogger Mr. Toast said…

    April, this means more to me than you might realize. I know "virtual" friends are way different from those in real life, but we (and I include Janelle, Brandi, and all of you guys) have been reading and commenting on each other's blogs for quite some time now, and I almost feel like I do know y'all. One thing I can say for sure: I've never been exactly what you would call devout, but I don't underestimate the power of prayer in this situation. I truly believe that one of the reasons I've done relatively well so far is due to the blessings of family and friends who are pulling for me. Call it "prayer" if you're a believer, "good wishes" or "positive energy" if you're not, but every little bit helps.

    Thanks.

     

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