[Cheesy narrator] When last we saw our hero, he was engaged in the fight of his life, battling the lung infection to end all lung infections while juggling romance, crazy parents, and a move 500 miles South.[/Cheesy narrator]
With the journals down, I figure, what the heck, I don't have much of a reason to keep this stuff thoroughly private any longer, anyway... so here's the big update I was planning to write for ages! In a nutshell, for those not necessarily acquainted with the whole story yet:
- I'm ill with Cystic fibrosis, the most common genetic disease among those of European ancestry, which mainly affects people's lungs;
- With a prognosis that gives me a 50/50 chance of living two years (and with my current health, I'd err far more on the bad side);
- With the only real hope for survival, long-term, a double lung transplant;
- That is made difficult by my being colonized with Burkholderia cepacia, a creepy multi-drug resistant germ that is associated with high mortality post-transplant;
- Death rates so statistically high, pretty much all centers in the country but the University of North Carolina Hospitals (UNCH at Chapel Hill) consider it a contraindication to transplant, barring me from it;
- Leaving me with little choice but to move to North Carolina in a (possibly vain, entirely justified nevertheless) desire to get on their waiting list, get transplanted, and possibly survive.
That's where we left off, last time I posted. As you may recall, I was very ill, on high doses of inflammation- suppressing steroids, and had just been diagnosed as diabetic, to boot. (When it rains, it pours...) Realizing that, if I had remained in New York for longer, I could have become stuck there by virtue of poor health, never getting a chance to move at all, I took the plunge and insisted on a hospital discharge, while I was still feeling quite sick.
The gambit paid off. My dad drove me and Jessica (One for Sorrow) to NC on May 20. During the trip, I wrote this on my handheld:
On the Mellow, Trick Road
I'm leaning on you, still amazed
That we're together.
I'm caught in a familiar daze,
And turning redder...
Your eyes engulf me, and the background
Fades away.
You hold me, quivering and spellbound
On the way
To our new home, some states down south;
Our private place.
(I marvel at your supple mouth,
Your gorgeous face...)
The Carolinas, sight to see,
Locales that beam
With Southern drawls, the sweetest tea,
Our daring dreams.
The trees are floating past our lane
In greenish blurs.
My fondest hope is to remain
Forever yours.
The roar and rumble of the road
Threatens, disturbs.
But I just feel like writing odes;
I'm unperturbed.
The setting sun alludes to fate,
And hints at doom.
But I don't care; let's celebrate!
We Got a Room(tm)!
The road turns wavering, intense,
Intimidating.
Outside, the darkness is immense,
Just biding, waiting....
The trees look grim beside the road,
The forest cackles.
Quite menacing, this whole abode
Raises my hackles...
But those are phantoms, ghosts of dreams
Left unfulfilled.
The ones that weren't what they seemed,
And so got killed.
They're powerless; beginning now,
Our dream takes flight.
(My favorite one--to have you--wow!!
To hold you tight...)
We'll start our lives anew out here;
Our dreams should live.
My main one--having you, my dear--
Will never give.
No matter what, I had you all,
Mind, body, soul.
And you, in turn, had such a ball,
My own heart stole.
It's no surprise you snatched that heart,
With your allure.
I'll never want to be apart;
Of that, I'm sure.
I experienced some light lung bleeding during the trip, but considering my overall health, I was actually pleased. My doc in New York had insisted I schedule an appointment with the UNC physicians before she'd let me get discharged, so I'd get seen immediately upon arrival, and I had. But, as luck would have it, the joke was on her: I couldn't make it because we left quite a bit later than I'd hoped, and the drive took longer than I estimated. I didn't actually have health coverage in NC, yet, too (my New York State Medicaid is practically useless for CF-related care in other states), but that didn't stop the doctors from being gracious and wanting to see me anyway. It also didn't stop their nurse from fixing an implanted needle I dislodged during the drive, which was nice, as it meant I
didn't have to stop injecting IV antibiotics in the middle of a potentially deadly infection.
From the medical point of view, UNC had agreed to perform the transplant. They'd take the risk and do what they could, with the rest being up to me. But the financial issue--how to actually
pay for it--loomed as the single greatest challenge. With that aforementioned NY Medicaid, and The Rules(tm) that say all the major costs for a transplant, somewhere around $500,000, need to be taken care of
before you can even get on a waiting list, things looked intimidating.
I was especially horrified when, upon calling a Medicaid office to inquire about switching to North Carolina's version, which would
potentially cover it, I was told it'd take 6 weeks after my move,
prior to which, I'd have to cancel my New York Medicaid ("you can't carry both"), and hope for the best with no health coverage whatsoever. Gadzooks, do these freaks
plan to kill people, or something? I had called them on April 1st, but sadly, this wasn't one of the sickest jokes ever, and were it not for a tricky loophole I found, which let me instantly switch over the programs--but only works for people the government considers "disabled"--I would have been screwed! Poor bastards who have to deal with that, without the loophole. I shudder to think of how sick I'd get in 6 weeks or more lacking health coverage! I could probably manage one or two (still terribly ill-advised), but after about three, I'd get deathly ill and need some treatments, ones that cost more than a house down payment.
But, that was in the past. Our apartment had been waiting for us since we rented it back in April. (We hadn't moved in because, aside from the lack of furniture, at the time, I was getting sick, and had to hurry back to New York, where I actually had health coverage!) We moved in and, days later, I obtained a temporary Medicaid card at the Social Services office. As soon as I got the number, UNC's doctors sent that application for transplant approval...
Becky Cicale, the lung transplant coordinator, explained that
the lung allocation policy had changed--ironically, on Jess' birthday, May 5--so that sicker patients got priority, and wait time previously acquired on the list no longer counted for much (a change that benefits patients with CF a ton). She said that, with my then-current health, I could potentially receive a new set of lungs in
weeks, not the "average wait" (for my blood type, A+) of a year! That was extremely reassuring, and gave us both true cause for optimism.
While my dad is eccentric, too--for instance, while staying with us for a few nights, he opted to drink tea out of a humongous BOWL, when I had specifically brought extra cups along--the real highlight of my family's zaniness is my mom, who is the most superstitious person I've ever encountered, and, while well-meaning most of the time, (among other things) accused my girlfriend of wanting to ritually sacrifice me in Oregon. I had decided this crap wasn't for me long ago, and was just waiting for a good opportunity to move out. Little did I know, once we were settled in, she planned to bring the additional furniture we requested--like a bookshelf--
in person, riding along with my dad, who she
can't stand with a vengeance (they're divorced many years now) to "make sure that idiot doesn't break anything"! Ugh. If I had known, I wouldn't have bothered.
Nothing good can ever come of those two being within the same 900 square mile area, much less the same car on an interstate trip... I was at the hospital, visiting my doctors, when I got the news she'd be visiting...
That day, if nothing else, would be memorable. I found out that NC's Medicaid wouldn't pay for any oxygen, for example, unless I had a reading of 85% blood O2 concentration to show them! (90% is where pulmonologists start being really anxious, because your heart gets exhausted and damaged. 85% is where you're admitted to the ER, blue in the face.) Mine was varying from 88%-92%, with the lowest reading I'd ever had back in New York, a few days before (86%). I was told by the oxygen company that none of those would qualify, so basically, I was stuck up shit reef without a snorkel. The docs had some ideas, like putting me on a treadmill until I had that low a reading from sheer exhaustion, but they couldn't actually certify anything like that for days, and I was worried as hell!
We went back, disappointed in how the appointment went. I was also told my osteoporosis was quite severe, and probably wouldn't respond as well as I'd hoped to treatment. In addition, the doc ordered 20 blood tests (I kid you not, everything from white blood cell counts to, apparently, syphylis testing??). When the nurse got out those vials and labels, as well as the biggest blood-drawing needle I've seen in my life (which looked like a full-sized toothpick), my jaw must have dropped to the floor. She apparently got every single tube in the lab together, and it took a freakin' long time to draw that much blood. I jokingly pleaded with her not to lose--or otherwise have to redo--those tests... on the positive side, she was quite good at it, and it hurt surprisingly less than I expected, given the size of that shish kebab skewer.
We went to eat at the local UNC student't cafe. I tried to prick my finger to get a blood glucose reading, and it didn't work. Not a drop came out. (The overall amount of blood she drew wasn't that whopping, as you give more while donating, so I must have simply been too jittery to use the lancet correctly. Still, all things considered, that was hilarious!) The situation turned even more surreal when, in the middle of our meal, the nurse walked into the same cafe (which was tiny, and anything but crowded). I laughed and hid my face behind my bag, whispering at Jess that "she came back for the rest, save me!" Heh, heh.
Between those idiotic things, and having to go back home to meet my parents--both of them at the same time, that is--that day was starting to be dreadful, indeed. Of course, one of the pieces of furniture they brought along (which I didn't actually want, oddly enough) was broken in transit; that resulted in much cussing, back and forth, and by the time they came in, they were both bitter, angry goons. Oh, and she didn't actually bring the bookshelf (or much of anything we'd actually
asked for). Instead, more imitation potted plants, and things. With all the bitching at my dad, as well as my residual surprise she'd actually put both of them through that just for kicks, apparently, I definitely looked disappointed. Oh, and she flipped out when I suggested we didn't really
need the horribly expensive, impractical silverware she'd brought us, or the microwave-unsafe (and somewhat tacky) china, both of which we'd tried to leave behind in New York. (I had tried to get as few favors as possible from her, because I didn't want to feel obligated in any way if, as I thought I might have to, I axed all ties with her.) Among other things that I didn't ask for, she paid for possibly the most expensive washer/dryer at Home Depot to be delivered days later to our apartment, too...
I tried to talk her out of these, repeatedly. I know how much credit card debt she has, so even if I didn't actually feel uncomfortable with getting big favors from her, I still see no way to reconcile accepting such expensive gifts with being an adult. But damnit, she wouldn't budge! And she became really mad, too, at one point tossing an avocado at my dad and saying how she wished I'd never been born, "because your brother would still be alive otherwise." (She missed: my dad picked up the busted avocado and, figuring "why not, it'll go to waste," nonchalantly ate it. That pissed her off even more.) Once the threat of actual violence was made, though, I loudly said "Stop! Not in this apartment,
ever" and insisted she stop acting out, lest I call the police if any injuries occured.
Of course, she took that as me "throwing her out on the street," made up some nonsense about Jessica's evil breast size turning me against her (more on that in a sec), and stormed off, madly, taking her silverware, washer/dryer delivery papers, and other things while theatrically denying my existence. I was both angry and relieved, to tell the truth... even if she did sleep in the car, she had no one but herself to blame, and I specifically made clear (as difficult as it was at the time) that it was her behavior, not her, that was unwelcome.
Speaking of her newest delusions, you might be asking, "WTF?" Well, it goes like this. When we hurried here from New York, Jess accidentally left a bra on my bed (... heh, heh). My mom found it, and, working under the perfectly reasonable assumption that "Big breasts take control of men, so anything over a B cup shows a woman is a whore" (or something to that effect, I can't say I was listening to her rambling in Russian all that carefully), figured that no, I couldn't possibly have independently come to the conclusion she was loony; it was all my girlfriend, brainwashing me with her boobs! (As a side note, I couldn't take that seriously, at all, and just laughed, which I guess was one of the reasons she got even angrier.)
So, enchanted vagina, evil mind-control boobs... wow, did I hit the jackpot! Way to go, Jess!
For all its value as comedy gold fodder, that day sucked, though. And my parents' silly influence wasn't over, by a longshot, even when they left for New York again. Earlier, my dad had convinced the maintenance guy to bring us a new fridge, citing some "weird smell" in it (that he, oddly enough, proceeded to wash out, and successfully eradicated). I didn't refuse the offer at the time, but later realized we'd gotten a slightly worse one (one less shelf in the freezer, and the door would have issues with closing that made everything frost up, badly). So, we replaced a perfectly fine fridge with a new one that had a couple of problems. They brought us a TON of bacon and eggs (something like 4 cartons of the latter), which was just bizarre, and left less room for food we'd actually want. Oh, and while I still don't know where they are, I strongly suspect my parents accidentally threw out--or took back--my desktop computer's power cable, speakers and optical mouse, which I know for a fact were around here, disconnected. Oh well: I'll reorder them soon enough, and we're on a newer laptop for the time being, anyway.
Eventually, we fixed that oxygen problem, too. Suffice it to say that a certain medical professional back in New York--a good friend--heard of that idiotic conundrum, and "remembered" (wink wink) a "previously-overlooked" progress note, taken, ahem,
while I was hospitalized there (additional winks), that showed I had blood oxygen concentration just low enough to qualify for home use of it under Medicaid. It's a testimony to how screwed up the system is, though, when you have to do stuff like that just to secure necessary treatment due to dumbassed (and incredibly ignorant) bureocratic rules.
Jess proceeded to get two part-time jobs--one at Subway, the other at Burger King--and, while the first looked more promising in the beginning, can't stand either nowadays. We're hoping to get her more opportunities once we actually have a car, as the bus is largely impractical for many things, and free service only extends to Chapel Hill and Carrboro (whereas, with a car, she could commute far more easily to a much more diverse--and hopefully well-paying--variety of places). I'm trying to be as supportive as possible, checking out movies we'd both like on Netflix, cooking for her on occasion, doing dishes (despite my mom's insistence us guys just don't do that kind of work, and that she wants to crawl into a hole every time she hears it...), and so forth.
Burger King's health care plan is atrocious, by the way. For $7 a week, you get about a paltry $1000 of coverage a year, for everything: doctor's appointments, prescription drugs, lab tests. But they're oh-so- generous if you come down with cancer, for, you see, in that case, they'll double that limit to a whopping
two thousand! (Good luck getting a stubbed toe treated with that in today's health care system, much less a deadly illness.) As someone asked Rainier Wolfcastle on the Simpsons, "How do you sleep at night?" (His reply, "On top of a big pile of money, with lots of beautiful women," seemed to describe such gratuitously shameful profit-hoarding very fittingly.)
We couldn't get online for a while, as it took a while to get our DSL connection ordered and actually set up. Confusingly, there's two phone jacks in the laundry room--of all places--that need to be plugged into each other for every other line in the house to work. That was bizarre, and the maintenance guy's explanation for it--something about the apartment complex and BellSouth not wanting people to steal phone wire, or something like that--didn't make a lick of sense.
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.
And, just as I feared would happen, Medicaid turned me down. They won't pay for a transplant, citing that B. cepacia infection, my osteoporosis and low weight, arguing the operation would hurt me more than help me. Of these, 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 bureocratic red tape, done largely out of spite or the desire to stall, whichever seems more likely.
Dr. Egan, head of UNC's transplant program, apparently showed, with his own research, that low weight is
not a contraindication. He was going to call Medicaid's director and explain that, while it does negatively affect CF'ers survival
pre-transplant, afterwards, with no raging infection to deal with and the high steroid doses, 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 post-transplant 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. That just pissed Dr. Egan off, because as Becky 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 nonsense overturned, and the precedent removed.)
Friday evening, June 17, as I was cooking a chicken, I had that distinctive gurgling sensation in my throat, recognizing that my left lung was actively bleeding. I turned off the stove and immediately sat down, repeating the Hitchhiker's Guide to the Galaxy motto--"Don't panic"--to myself, and calling Dr. Defeo, my pulmonologist, who just happened to be on call at UNC. In between bringing up, with as little coughing as I could manage--difficult, when you feel like drowning--spoonfuls of frothy fresh red stuff, I explained the situation, and he advised me to go to the ER if it got worse, or even if I just felt like it. But, ever the soldier of fortune, I didn't, so once it stopped, I went back and finished preparing dinner. It was surprisingly good, too (spaghetti sauce-coated chicken, an easy-to-make recipe Sedim from #infidelchat gave me to impress my girlfriend with). We ate and went to bed...
In the morning, I woke up with what was, perhaps, the most horrendous pain I'd ever experienced. It felt like it came from the area of my left lung where the bleeding had occured, too. Anyway, we rushed off to the ER in a taxi, and the docs there (eventually) insisted on giving me morphine! While worried about its addictive potential, it didn't take much convincing to get me to agree, with pain that bad. I spent the next few days in hospital, apparently the victim of another lung infection (they don't seem to ever go away with me), and got discharged with IV antibiotics--more Tobramycin and Meropenem--on Wednesday. The bastards on that floor didn't let Jess stay overnight, either! That sucked.
And my parents, as always, just
had to interject superstitious nonsense and ruin my mood, repeatedly: my mom, with warnings to "say a prayer for Lola" (my baby sister, who died many years ago, was born the day I was taken to the ER, and is, according to her, out to get me, out of jealousy towards the living...) and my dad, with a stunningly ridiculous recommendation to treat my diabetes. To wit, I'm supposed to take spring water, put it in the freezer, thaw it out later, and drink it. What magical changes occur in frozen-dash- unfrozen water that make it an effective treatment for high blood sugar, or the kidney damage it causes, escapes me for the time being. I'm also not sure why
any spring water wouldn't do, in that case, since
all of it has been repeatedly frozen and thawed over the past few million years, but perhaps the magic change creates a "best used by" expiration date. Sheesh, my parents can be so nuts! Gotta love them.
But, I'm back now. On the positive side, at pulmonary rehab, I've upped the amount of walking I do to 30 minutes or so, at 3.0 miles per hour, with a 5% incline. That's pretty decent, from what I hear. Still, that health stuff sucks, with hemoptysis (the blood-coughing) being one of the symptoms I fear most (right along there with high, uncontrollable fevers, the feeling I get--when very ill--of a severely inflammed and constricted airway, and the pain). It hasn't recurred yet, but I know it will. It's just a matter of time... and with Medicaid being a total bitch about approving my transplant application, I'm hoping they don't succeed in saving money on me the post-mortem way. Ah well: Maybe I can just relax over the weekend with my sweetie, and get that fixed later.
One bit of good news:
Dr. Egan has new statistics he'll unveil in the fall which show that, at UNC, patients like me--yes, with B. cepacia's deadly third strain--have a 65% chance of surviving five years post-transplant, and a whopping 80% chance of living at least a year! (Compare that with the older statistics of 33% surviving the five-year mark, and only
half living past a tumultuous first year!) On second thought, "good" news"? Hell, along with meeting Jess, that's the best news I've had to report in ages. I was speechless for a while, and just walked outside the hospital for a few minutes, looking at the ground and imagining the possibilities, if this thing would only work...
And damnit, I've never wanted anything to turn out well so much in my life... any suggestions? Anyone wanna write to Oprah or Montel Williams for me?
Know anybody in the press who wants a (what I like to think is a) decent human-interest story? Have fundraising advice, or would like to volunteer on that front (and not just by donating, although, once I have a tax-deductible account set up soon, I would appreciate it a ton)?
[Cheesy narrator] What will become of Allan now? Can that transplant still occur in time? With the use of private fundraising, insurance tricks, or other loopholes, can he overcome the financial issues barring him from a one decent chance at survival? Could anonymous friends on a webboard yield the answers he needs? And Will the government ever stop screwing the little guy (in his case, literally, as he's 5'2")? Tune in to the next edition of F---ed up Healthcare Fallacies to find out! [/Cheesy narrator]
That long-awaited update on my illness/move, and things.
Re: That long-awaited update on my illness/move, and things.
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