send him money - he's dying.....

ISN

a post from another forum....which touched my heart (cheese)

he said....

would really appreciate it if you people would tell me whether this is a decent, public-and-editor friendly summary of my battle with the government (over getting a lung transplant paid for), suggest any changes I should make, and so on. Most likely, something like this is what I'll post on a site I set up for awareness... might even need to do some private fundraising with it, if they keep on being bitching asstards, but for now, I'm just gonna send it along to the papers, talk shows, local TV news channels and so on.

My name is Richard Allan Glenn; I'm 20 years old, live in North Carolina, and will likely die of Cystic Fibrosis, a progressive lung disease, in the near future, unless I get a transplant. While I've beaten daunting odds before, lucky streaks can only go so far, and it's never been more obvious I'm losing the battle. My own lungs will fail me soon: according to pulmonary function tests, they're at something like 20-28% capacity, chest X-rays show extensive, untreatable scarring, and a troubling recurrent infection has been haunting me for the past several months. My official prognosis is a 50/50 chance of surviving two years, but the way I've been feeling, I have no idea how much more abuse these lungs can take, before they go and take me with them. I always knew it could come to this. The possibility of a transplant was looming four years ago, when I fell violently ill as I never had before; however...

I have Burkholderia cepacia, a killer germ associated with CF. It severely undercuts survival after transplant, and nowadays, almost no hospitals will even look in your direction if you're unlucky to come down with it. A couple of years ago, I investigated transplants in New York (where I lived until recently), but was turned down on that basis. In a way, it was a relief: with or without a transplant, life with this damned disease seemed largely unappealing. Relocating--closer to a center that might take my case--would require a huge effort, and cost what my family couldn't easily afford. With B. cepacia, a transplant likely wouldn't help, either; I would have a 1 in 3 chance of surviving 5 years, potentially (and ironically) being worse off than without one. With no real desire to live, a looming, very difficult illness ahead, and the prospect of so many hardships for a meager chance at yet more of the same, I figured my death would only bring some closure to a tragic situation. I would be indifferent to it, neither helping bring it about, nor taking extraordinary measures to put it off, once I became a crippled, pathetic shadow of my former self. I would accept it when it came, and "go gently into that dark night," after all. But how times change...

May, 2004 was a turning point in my life. It began on the most dejected, nihilistic note in my memory. The seeming futility of it all, as well as an unusually long (at the time) period of sickness, had gotten to me. I largely withdrew from friends and family, abandoning hobbies I once enjoyed, finding some remaining solace mainly in gallows humor. "It's just a matter of time now," I thought, almost looking forward to relief the permanent way. And then I met Jessica...

What can I say, and where do I begin? Something happened right then. The change was subtle, at first. I began paying attention to, and looking forward to, my days again. The world seemed more colorful, radiant. A recurring, gruesome nightmare I'd had was replaced with delightful, brighter dreams, and those, in turn, I dwelt on, imagining repeatedly, the first daydreams I'd had in a long time. And the more I fell for her, the more I realized my past decision was... no, not wrong. Given what I knew then, it was quite appropriate. I really was the poster child for euthanasia! But it was made in naivete, with little appreciation of just how beautiful and wondrous life can be. She revived something within me that had withered long before: a will to live. In an entirely eerie way, she fulfilled the prayer of poet Thomas Gray ('Hymn to Adversity'), which I had adopted as my creed shortly before meeting her:

"Thy form benign, O Goddess, wear,
Thy milder influence impart,
Thy philosophic Train be there
To soften, not to wound my heart.
The gen'rous spark extinct revive,
Teach me to love and to forgive,
Exact my own defects to scan,
What others are, to feel, and know myself a Man."

Mere weeks after meeting her, I knew I'd be rethinking that decision. Whatever it took, I'd try with all my might to get that transplant. And from September onwards, I've been fighting a veritable cataclysm of setbacks and bureocratic red tape to get one. There's only one hospital in the entire US with doctors daring and expert enough to pull off a transplant with my B. cepacia: the University of North Carolina at Chapel Hill. Originally from New York, lacking any sort of health coverage that would be accepted in another state, it took quite a bit of planning and clever tricks, but I got my evaluation testing in February. UNC's doctors officially endorsed my transplant candidacy in March, saying they'd do whatever they could to give me a second chance, even if they could make no guarantees. In May, almost exactly to the day, one year after meeting my sweetheart, we moved to our new home, ready to begin a new life. We've been together since January, and it's been the most amazing time of our lives, ever since. We have no doubt this relationship--for both, our first romance, a rarity today--will last, "til death do us part." And, with any luck, I'll get to reiterate that, appreciating her more and more, with each passing year. Now, only the financial issues--paying for a transplant--remain...

After many a mishap, I succeeded in trading in my New York Medicaid for North Carolina's version, which, with my pre-existing condition making decent insurance impossible to obtain, was my one, best hope for paying a sum--$500,000--that I had no hope of getting on my own. Due to the nature of the organ allocation system, and government regulations, one must secure the full payment for a transplant before even being admitted onto a waiting list, not just before the operation itself. With my lungs in as bad a state as they are, this creates the horrifying potential for my demise on a technicality, not because I was too sick for a transplant to help me, but because I was too poor to afford one. But I was optimistic. Everything else had worked out, thus far, so perhaps this would, too; and, at any rate, worrying about it prematurely would help no one...

And then, realizing one of my worst fears, Medicaid turned me down. The transplant docs had promised to call me back as soon as they had anything to report, but when they didn't reply for days on end, I knew that something was up. The government won't pay for my transplant, citing that dangerous infection, my osteoporosis, and low weight (I'm 5'2" and only 95 pounds), arguing the operation would hurt me, rather than help me. Why they think they're more qualified to make that judgment, than the actual doctors who'd be doing the surgery and followup, and who have better survival rates than any hospital in the country even with those factors, is anybody's guess. And I have strong reason to believe their "justifications" are frivolous red tape, done largely out of spite or the desire to stall until I die, saving them the money.

Dr. Egan, head of UNC's transplant program, reportedly showed, with his own research, that low weight isn't a problem for transplants. According to him, while it does negatively affect CF'ers survival pre-transplant, afterwards, with no raging infection to deal with and high doses of immune-suppressing steroids, we gain a ton of it back fast, and the real problem is the exact opposite, being overweight and going in for transplant. (So, in effect, a transplant would not only be compatible with, but fix one of the "issues" they use as justification to deny it. Oh, the irony of ignorant HMO-like practices!)

Additionally, from what I've read, everyone with Cystic fibrosis, pretty much, gets severe osteoporosis by the time a transplant becomes an option. If they used that justification consistently, they wouldn't approve lung transplant with CF at all. Furthermore, it's treatable with drugs like Fosamax, and I've recovered a bit of my lost bone mass in the past few months. So, despite the very real risk of fractures from all the bone-thinning drugs they'd have me on (something which people recover from), that shouldn't really be an issue either.

Finally, the B. cepacia... where to begin with that one. As Becky Cicale--the lung transplant coordinator at UNC--told me, they've never used it as justification to deny anyone's transplant before. With UNC the only center in the country still considering it for patients with B. cepacia, and actually having success with them, denying it--on the grounds that the risk is "too high"--for patients who'd die for sure otherwise--is tantamount to imposing a death sentence. And with half of UNC's cepacia-positive patients awaiting transplant being listed with Medicaid, again, if they applied that justification consistently, they'd all be kicked off, too. (That's the last thing I want to happen, as UNC's whole lung transplant program would effectively shut down, in that case; the docs are obviously chagrined at the thought, so they're very interested in seeing this potential precedent nipped in the bud.)

The doctors are appealing. Jessica and I are fretting, refusing to have our love cut tragically short by a pathetic bureocracy. Friends and family are considering private fundraising, but barring something extraordinary, half a million dollars is a daunting amount to raise in the short time I may have left. And somewhere in the state capitol, Raleigh, a menacing folder sits on someone's desk, with medical records and forms currently stamped "Denied," that may very well determine whether I live or die.

And so, I find myself in such a messed up situation, a dead man walking, but, paradoxically, more alive than ever before. That I shouldn't get my hopes up, too high, goes without saying; but despite all these setbacks, I can't help but dream of a different life I could lead, if only for a brief time: a life without those incessant nebulizers and IVs, a life where I could resume those studies illness forced me to abandon (and perhaps make something of myself, after all), a life where I could chase after, dance with, and kiss my sweetheart without having to pause for breath...

I know you must get a lot of stories and requests for assistance like this. And, it being a zero sum game, doing that for me might mean someone else, with equally worthwhile problems, going without. But I can't just give up and resign myself to this accursed illness, now, when I've come so far, so long as the faintest glimmer of hope remains.

"Enjoy the show, unknown in length
Though it may be...
Together, may we find the strength
To shape it, see."
(From 'A Playwright's View,' one of the many poems I wrote Jessica.)

I can live--no pun intended--with losing the good fight; but I cannot abandon it from the outset. Thank you very much for reading this, and for any help you might provide.

Optimistically yours,
--Richard

By the way, I love the forum's new look. Nice job, guys. :-)

(a post from www.imforums.com.....let's help this fukker b4 he's fukked!!!