That's right, folks, thanks to Cullen Browder and the crew at WRAL-- Raleigh's CBS affiliate--my story was immortalized on the airwaves and is now travelling, at light speed, towards other planets. Once it reaches the homeworld of an advanced civilization that has the technology--and desire --to cure me, I'm home-free!
A transcript of the story was copied on their homepage, <a href="http://www.wral.com/news/5129014/detail.html">'Man Says Medicaid Wrong to Reject His Appeal for Lung Transplant</a>.' The page quotes me talking like a Dr. Seuss character, because they closely followed the dialogue in the video (also available for download). I read some of my poetry in the 6 o'clock segment as the story was told. (The poem, <i>"A Playwright's View"</i> can be read in full <a href="http://www.save-allan.org/wpblog/?page_id=17">here, along with others</a>.) I've received dozens of emails since that broadcast, as they linked to the site and mentioned my private fundraising efforts. This is one of the best developments in months!
In other news, also on the same channel, the reason Medicaid can't afford my transplant:
<blockquote><a href="http://www.wral.com/health/5129321/detail.html">WRAL</a><br>A survey by The Associated Press earlier this year showed nearly <u><b>800 convicted sex offenders in 14 states received erectile dysfunction drugs filled by Medicaid.</b></u></blockquote>
I'm in quite a bit of pain from a recent surgery. More on that below. Although it wouldn't be much of a shock after their other policy decisions, I <i>wasn't</i> in pain because Medicaid refused to pay for anesthesia, too.)
A few days ago, I was at the annual NC State Fair in Raleigh. We nearly got lost on the way there--taking a detour or two through Cary--and back (couldn't find the exact gate we entered through, for almost an hour, just wandering around). Some of the rides--like the "Rainbow," something like a ferris wheel on steroids, crack and meth put together--were so intense, they resulted in esoteric NPEs (near-puke experiences). I wondered, at one point--as I was getting slammed back and forth--if it was safe for my low -mass bones, but decided to risk it anyway.
Between the rides, attractions, shops, freak shows (which, out of respect for the freaks, we didn't patronize), and rigged contests it was one of the most entertaining, expertly orchestrated fairs I've ever been to. Shortly before we left, I won a prize by tricking the local "I'll guess your weight" guy. It went like this:
- "Hey, sonny, step right up, anyone's weight will be guessed to within 5 pounds! Beat me and win any of these fabulous prizes it cost us 5 cents in Chinese infant labor to manufacture!"<br>
- "Uh... okay."<br>
- "I'll give you... okay, okay, I'll say 114, give or take five pounds."<br>
- <i>[Shocked, after looking at the scale]</i> "86...?! You don't need a prize, son, you need a cheeseburger!"
I agreed. However, as I had just been on a ride that left us both feeling ill, the thought of anything with cheese on it--indeed, any food- -was disgusting. We laughed, and I was referred to the prize booth. It had Spongebob Squarepants paraphernalia, assorted stuffed animals and some other junk. I couldn't easily choose which souvenir to grab, so I picked a moderately fluffy angelfish pillow. It will make a nice placeholder for our non-existent children on the backseat of our car.
<b>The moral of the story:</b> Never try to guess a CF patient's weight. You'll get burned faster than the calories we consume.
<p align="center"><img src="http://save-allan.org/wpblog/05-10-23/g-tube.jpg" width="350" height="200" alt="The plastic tube they stuck in me"><br><i>The plastic tube they stuck in Allan</i>
Speaking of which, last week, I finally broke down and got a Gastrostomy tube: One of these devices, implanted into the stomach directly through the abdominal wall (med-speak for <i>"Tube that rips through your belly like the creatures from Alien or Species"</i>). It bypasses the mouth and crappy appetite altogether, allowing you to effortlessly chug 1500, 2500 or even more calories directly.
As you may imagine, the procedure is not pretty, and--at least in my case--involved quite a bit of pain, as well as directly led to a potentially deadly lung infection. The latter--given how difficult my germs are to treat--may or may not be serious. Updates will be posted once I know whether I'm recovering, or getting worse.
I begrudgingly made the decision to get this inserted weeks ago, after I realized it would take quite a nasty operation to rival the daily hassle of trying to gulp down enough food just to <i>maintain</i> a weight that was already unhealthy. With the promise of letting me get to a <i>reasonable</i> weight--something I haven't had in 5 years, and which I've never had for more than a few months at a time--it was an easier decision than I expected.
The surgery was scheduled for Thursday, October 20th. Wednesday, I went to the hospital to pick up 24 ounces of strawberry-flavored Barium (a substance which shows up on X-Rays and allows surgery gurus to see your innards). It wasn't the nastiest of medicines, going by flavor and consistency, but the sheer amount I had to gulp down was overwhelming. Fortunately, I did (by about midnight), and they didn't have to go in blind, potentially perforating my pancreas. (Try saying <i>THAT</i> three times fast!) I was warned, though, that the barium is known to turn poop white...
Interventional radology performed the procedure the following day. Given that I had not slept--at all--the previous night, it was much easier on me than I had expected.. I checked in to the hospital admitting office, and wandered over to the X-Rayers' dungeon headquarters. By the time they got around to asking me in, reviewing my medical records, answering my questions and getting the consent forms signed, I was half-asleep already.
<p align="center"><img src="http://save-allan.org/wpblog/05-10-23/g-tube.gif" width="150" height="200" alt="A scientifically accurate artist's conception of a g-tube procedure"><br><i>My scientifically accurate, artist's conception of the operation</i>
General anesthesia is frowned upon in CF patients with this much lung damage, so it was supposed to be done with a local. (Either that, or Medicaid refused to pay for anesthesia, too, and they had to skimp a bit.) The sedative they administered to calm me down--via the med-port on my arm, not a new IV--was trouble-free, and left me even drowsier. By the time they got to the shot itself, I was entirely out of it. Most likely, I fell asleep just as they were inserting a tube into my nose. While very unpleasant, it was a necessary part of the procedure, as they would use it to dig around in my belly, finding a suitable spot for the permanent one they would stick in, from the outside. Once it was located, a light could be shined--via the nose tube--that would be visible from the outside, showing the surgeon where to cut.
What can I say? Whether it's amputating a limb with alcohol as your sole disinfectant <i><b>AND</b></i> anesthetic, or connecting individual nerve endings in a micro-reattachment of a hand, surgery is one of those maddeningly clever voodoo professions that you just have to admire. I'd trust many people to prescribe or suggest pills, from doctors to dentists to pharmacists; but it takes that much more to be confident enough of someone's skills that you'd agree to be torn open--your insides messed with, your oil changed, your fuel pump replaced--but I digress.
After they stuck the straw up my nose (and possibly put panties on my head, hoping to blackmail me with the pictures), I must have fallen asleep on my own, victim of the sedation and exhaustion alike. I have no idea of what happened afterwards, short of what I've read about the procedure. The next thing I remembered was waking up in the hospital, with tape on my tummy, a pain that grew more pronounced--but tolerable--with every waking moment, and Jessica beside me. So far, so good.
Within a few minutes, though, I found myself in so much pain that coughing was virtually impossible. And when you have lungs as scarred and damaged as mine, this is grade A <b>NOT GOOD.™</b> (I suspected this might happen when I discussed this with the physical therapy department, before the procedure, but was assured it wasn't a serious issue, and that I'd be back to normal "in no time." Serves me right for not double- checking with other patients.)
They put me on--what I affectionately refer to as--"Rush Limbaugh Juice" (oxycodone and acetaminophen, the active ingredients of Oxycontin and Tylenol, respectively). That only partially helped; despite valiant huffing and puffing efforts, which made me see stars, at times, I couldn't get anywhere near a decent amount of junk out of my lungs, and promptly fell ill with a 104 degree fever (on the good side, it wasn't 104 in Celsius). My oxygen saturation on room air dropped to 87%, and the fever was only stopped by something like 1.4 <b>grams</b> of ibuprofen. In the meantime, I had chills so severe that--curled up under 4-5 blankets, with the thermostat at 85--I was still shaking and chattering enough that I worried about cracking some bones.
This was the sickest I've felt since April, 2000, when I nearly died. There is no way to describe Friday night other than "a brief stint in Hell." The fevers turned out to be almost uncontrollable, so as I mentioned, I was also given huge doses of ibuprofen (1400 mg. here, 800 mg. there). Between that, the narcotic and the Tylenol equivalent, my liver was probably crying.
Despite passing the three-day mark from the surgery, the pain has only marginally improved, just enough that I'm finally able to barely tolerate chest PT (clapping, to dislodge that infected mucous). Coughing it up, after it's ejected, is still very agonizing. I am now on five different antibiotics to suppress the infection through my recovery:
<UL><li>IV amikacin;</li><li>IV aztreonam;</li><li>IV meropenem;</li><li>Oral SMZ-TMP ("Bactrim," "Septra");</li><li>Oral minocycline.</li></ul>
It would be most ironic if a surgery meant to improve my health, that was supposedly routine and had no major complications, actually wound up killing me.
And for all that trouble, did I get to use the tube, yet? Well, no... that would have happened yesterday evening, if not for one of the most arrogant nurses I've ever dealt with. The plan I discussed with doctors, and my nutritionist earlier, was to see if I could tolerate the formula they'd be pumping into me, and then increase the dose, gradually, from a token can (500 calories, 23 grams of fat) to the three or four that would be the final dose, giving me 1500-2000 calories a night.
With the first dose, 8 ounces over 8 hours, I would need no insulin (too few carbs, administered over too long a time) and, as I surmised, fewer digestive enzymes than I'd eat with a pizza or burrito that I gulped down over half an hour. But while they anticipated changing insulin needs, they seemingly forgot about changing enzyme needs!
The conversation went something like this:
- "Okay, are you ready for the tube feed?"<br>
- "Sure!"<br>
- "Take four of these enzyme pills first."<br>
- "Okay.. oka... wait, four of them?"<br>
- "Yes, that's what the order says. Four before the feeding, four more when you wake up in the morning."<br>
- "I think this might be a mistake. That's eight Pancrease MT20s; something I would not take even with a humongous steak, or Hardee's <a href="http://www.msnbc.msn.com/id/6498304/">Monster Burger</a>. I usually take 2-3 with something as small as this, and that's when I would consume it all at once. This seems excessive for an 8-hour snack."<br>
- "No, if it's in <b>The Order</b> <i>[pronounced with a zeal that the pious would use, when saying "The Bible"]</i> it must be true."<br>
- "Can you page one of the doctors so I could discuss this with them, and make sure it wasn't a mistake?"<br>
- "Look, it's in your orders. They would have set the appropriate dose, that you as the patient must follow. You had plenty of time to discuss it with the docs before!"
I was taken aback for a second by her trying to shout me down with interruptions, but politely (still raising my voice in response to hers) explained that <b>(1)</b> doctors are people, too, <b>(2)</b> this seemed like an oversight rather than an error, because I'd only need fewer enzymes while on the token dose--for a day or two, at worst--and <b>(3) </b> I was in no mood to be lectured by those who had never experienced shockingly inept medical errors, first-hand. In hindsight, I wonder if I should have made some personal attacks, too. Perhaps I'm a better man for having walked away...
Though, this conversation did result in her paging a doctor, rather than attempting to intimidate me. I will give her the benefit of a doubt and dismiss this incident as something that naturally happens when nurses are overworked and undercompensated, perhaps. The doc I got ahold of at the time was, unfortunately, not keen on messing with enzyme dosages. We discussed it at length, and I decided it would be a good idea to hold off until this morning, at least, when I could run it past the guys making these decisions...
As I knew would happen, those agreed with me and wrote an order specifying I could set my own enzyme doses, based on past needs and what I felt was appropriate. They agreed that 1 enzyme at the start, one in the middle of the feed, and one when waking up should work well, among other regimens I proposed.
The moral of the story? Patient <i><b>at least sometimes</b></i> knows best, and you are your own best advocate.
I won't exaggerate the seriousness of this. Enzyme overdoses are, from what I've read, practically unheard of. Their usual side effect is constipation and other GI issues. Nevertheless, patients with CF are already predisposed to digestive problems--and any that you <i>do</i> get may be more severe--so I had to tread carefully. In addition, I already had several other risk factors for constipation. The Barium I drank the day before the operation lists that as a common side effect; so do narcotic drugs, which I'm on for the pain.
Combined with some more private material that would make people scream <b>TMI</b> ("too much information"), and the fact I was treated like a child with a temper tantrum rather than a concerned, health-conscious adult, the enzyme dosing episode steeled my resolve to get to the bottom of it. And once again, I came out on top.
At this stage, I'll add that no one should be allowed to comment on how "insignificant" or "complication-free" a surgery "usually" is, unless they've had it themselves. In my country, Allanworld--the trigger-happiest place in the universe--medical staff would be honest, sympathetic, and never condescending. They would not downplay the side effects you'd likely experience, exaggerate the benefits of a treatment, cite improbably quick recoveries--or gruesome and rare outcomes--as the norm to convince you. They would not pretend they know better about an illness--one out of the potentially dozens they're passingly familiar with--than patients who live and breathe with just that one illness, 24/7.
I remain curious on whether <b>(1)</b> most people who get g-tubes are sufficiently okay on the lung front, that they can manage with drastically reduced lung-junk clearance for a few days; <b>(2)</b> it doesn't normally cause as much pain as it did in my case, making normal coughing something you could quickly resume; or <b>(3)</b> that it really isn't such a "minor surgery" with a "same-day discharge" as has been claimed.
Overall, I have mixed feelings about the procedure. It didn't turn out to be as benign as advertised. I won't condemn it on that basis, as most procedures aren't, and I fully anticipated how serious this one would be. (It's a running joke among patients with any chronic illness that <i>"won't hurt at all"</i> means <i>"will be barely tolerable,"</i> while <i>"might sting a little"</i> translates to <i>"you'll wish you were never born by the time it's over."</i>)
I'll consider it justified if I can put on some 20 or 30 pounds and get a reasonable BMI (body mass index), eliminating one of the "contraindications that really aren't" Medicaid used as a reason to deny my transplant. Sheer curiosity makes me want to find out just <i>how far</i> they'll be willing to stretch tortured excuses not to pay for a life-saving operation on the basis of "excessive risk to the patient."
And about those hundreds of sex offenders getting hard-ons courtesy of the taxpayer, while the poorest and sickest languish, dying because bureaucrats decide a 60% survival rate isn't good enough: You think that's the only recent story that would shred whatever semblance of naive idealism you may still possess? If so, I have "news for you!" <b>Exhibit B:</b>
<blockquote> <a href="http://www.alertnet.org/thenews/newsdesk/N27395712.htm">LA hospital suspends liver transplants</a><br>
--Routers
LOS ANGELES, Sept 27 (Reuters) - A Los Angeles hospital on Tuesday suspended its liver transplant program after <b>allowing a Saudi patient to jump to the top of the waiting list and falsifying data</b> to cover it up....
[T]he Saudi Embassy paid the $339,000 cost of the operation and hospital stay --<b> a figure 25 percent to 30 percent higher than the cost typically paid by U.S. insurance companies.</b>
The identity of the patient was not revealed but officials said it appeared that the scheduled recipient, also a Saudi, was out of town when a matching liver became available.</blockquote>
And what of the patient who <i>couldn't</i> afford that hefty bribe, but who was good enough to have his name borrowed as the paperwork-only "recipient" of the organ, to save the rich guy who wouldn't otherwise qualify for it?
<blockquote> <a href="http://www.msnbc.msn.com/id/9686727/">Switched liver transplant led to man's death</a><br>
--MSNBC
LOS ANGELES - <b>A high school principal who had been first in line for a liver transplant died less than a year after an organ improperly went to someone else and records were faked to cover the switch</b>, a published report said.
St. Vincent Medical Center removed the educator from the waiting list, but he was told his condition was stable and was left to believe his turn would still come, the Los Angeles Times reported Thursday. It never did, and Saad Al-Harthi died at age 59 in August 2004.</blockquote>
Let's hope history doesn't repeat itself as often as it used to.
It's unfortunate that real people are trapped in this dark pit, this limbo of medicine and greed (which, more and more, are becoming paradoxical bedfellows, rather than natural enemies). Both the doctors with integrity, who are forced to play by the blood-stained rulebook of HMOs and greed-driven medical policy (or move on to other careers), and innocent patients--often just struggling to save their lives, or savor the first effortless breath that others take for granted--are caught in the crossfire. It all reminds one of this eerily prophetic parody from 1998, before I even considered a lung transplant, or knew they were an option with Cystic Fibrosis:
<blockquote> <a href="http://www.theonion.com/content/node/29112">Hippocratic Oath 'Under Review' By HMO Board</a><br>
--The Onion, America's Finest News Source <i>[and boy, does it live up to its tagline!]</i>
"HMOs must be free to disclose patients' medical, personal, and financial information to insurers. How else can we determine what treatments a patient is or isn't eligible to receive? <b>If someone needs a new lung and they don't have the necessary funds to pay for it, how are we supposed to know not to perform the surgery?</b> I can't tell you how many cost overruns have been rung up as a result of doctors providing life-saving operations in accordance with the Hippocratic Oath, only to find out afterwards that the patients weren't covered. In a case like that, the surgery turns out to be for nothing. I get burned up just thinking about it."</blockquote>
I'll go out on a limb and make a prediction: Years from now, should I still be alive, I will get no apology from the bureaucrats who would have non-chalantly <i>killed me</i>, if they had their wish. <b>There will be no acknowledgment that the care I received, while slowly dying of CF</b> (example: $500 a day for home IV drugs, $14,000 for a 6-day hospital stay), <b>will have cost them much more in the long run than just paying for a lung transplant in the first place</b>. And in the meantime, they will have condemned countless other patients to a miserable death they could <b><i>NOT</b></i> escape, many with even more transparently ridiculous justifications.
And only a few people will lose any sleep. No one will care enough, and be in a position powerful enough to do a thing, that these practices will be changed. Those with the money, or insurance, won't care because it won't affect them. Patients like myself will continue putting up with it, because they have no alternative but death. Legislators will continue watching people die, unable--rather, unwilling--to take an ethical stand.
A transcript of the story was copied on their homepage, <a href="http://www.wral.com/news/5129014/detail.html">'Man Says Medicaid Wrong to Reject His Appeal for Lung Transplant</a>.' The page quotes me talking like a Dr. Seuss character, because they closely followed the dialogue in the video (also available for download). I read some of my poetry in the 6 o'clock segment as the story was told. (The poem, <i>"A Playwright's View"</i> can be read in full <a href="http://www.save-allan.org/wpblog/?page_id=17">here, along with others</a>.) I've received dozens of emails since that broadcast, as they linked to the site and mentioned my private fundraising efforts. This is one of the best developments in months!
In other news, also on the same channel, the reason Medicaid can't afford my transplant:
<blockquote><a href="http://www.wral.com/health/5129321/detail.html">WRAL</a><br>A survey by The Associated Press earlier this year showed nearly <u><b>800 convicted sex offenders in 14 states received erectile dysfunction drugs filled by Medicaid.</b></u></blockquote>
I'm in quite a bit of pain from a recent surgery. More on that below. Although it wouldn't be much of a shock after their other policy decisions, I <i>wasn't</i> in pain because Medicaid refused to pay for anesthesia, too.)
A few days ago, I was at the annual NC State Fair in Raleigh. We nearly got lost on the way there--taking a detour or two through Cary--and back (couldn't find the exact gate we entered through, for almost an hour, just wandering around). Some of the rides--like the "Rainbow," something like a ferris wheel on steroids, crack and meth put together--were so intense, they resulted in esoteric NPEs (near-puke experiences). I wondered, at one point--as I was getting slammed back and forth--if it was safe for my low -mass bones, but decided to risk it anyway.
Between the rides, attractions, shops, freak shows (which, out of respect for the freaks, we didn't patronize), and rigged contests it was one of the most entertaining, expertly orchestrated fairs I've ever been to. Shortly before we left, I won a prize by tricking the local "I'll guess your weight" guy. It went like this:
- "Hey, sonny, step right up, anyone's weight will be guessed to within 5 pounds! Beat me and win any of these fabulous prizes it cost us 5 cents in Chinese infant labor to manufacture!"<br>
- "Uh... okay."<br>
- "I'll give you... okay, okay, I'll say 114, give or take five pounds."<br>
- <i>[Shocked, after looking at the scale]</i> "86...?! You don't need a prize, son, you need a cheeseburger!"
I agreed. However, as I had just been on a ride that left us both feeling ill, the thought of anything with cheese on it--indeed, any food- -was disgusting. We laughed, and I was referred to the prize booth. It had Spongebob Squarepants paraphernalia, assorted stuffed animals and some other junk. I couldn't easily choose which souvenir to grab, so I picked a moderately fluffy angelfish pillow. It will make a nice placeholder for our non-existent children on the backseat of our car.
<b>The moral of the story:</b> Never try to guess a CF patient's weight. You'll get burned faster than the calories we consume.
<p align="center"><img src="http://save-allan.org/wpblog/05-10-23/g-tube.jpg" width="350" height="200" alt="The plastic tube they stuck in me"><br><i>The plastic tube they stuck in Allan</i>
Speaking of which, last week, I finally broke down and got a Gastrostomy tube: One of these devices, implanted into the stomach directly through the abdominal wall (med-speak for <i>"Tube that rips through your belly like the creatures from Alien or Species"</i>). It bypasses the mouth and crappy appetite altogether, allowing you to effortlessly chug 1500, 2500 or even more calories directly.
As you may imagine, the procedure is not pretty, and--at least in my case--involved quite a bit of pain, as well as directly led to a potentially deadly lung infection. The latter--given how difficult my germs are to treat--may or may not be serious. Updates will be posted once I know whether I'm recovering, or getting worse.
I begrudgingly made the decision to get this inserted weeks ago, after I realized it would take quite a nasty operation to rival the daily hassle of trying to gulp down enough food just to <i>maintain</i> a weight that was already unhealthy. With the promise of letting me get to a <i>reasonable</i> weight--something I haven't had in 5 years, and which I've never had for more than a few months at a time--it was an easier decision than I expected.
The surgery was scheduled for Thursday, October 20th. Wednesday, I went to the hospital to pick up 24 ounces of strawberry-flavored Barium (a substance which shows up on X-Rays and allows surgery gurus to see your innards). It wasn't the nastiest of medicines, going by flavor and consistency, but the sheer amount I had to gulp down was overwhelming. Fortunately, I did (by about midnight), and they didn't have to go in blind, potentially perforating my pancreas. (Try saying <i>THAT</i> three times fast!) I was warned, though, that the barium is known to turn poop white...
Interventional radology performed the procedure the following day. Given that I had not slept--at all--the previous night, it was much easier on me than I had expected.. I checked in to the hospital admitting office, and wandered over to the X-Rayers' dungeon headquarters. By the time they got around to asking me in, reviewing my medical records, answering my questions and getting the consent forms signed, I was half-asleep already.
<p align="center"><img src="http://save-allan.org/wpblog/05-10-23/g-tube.gif" width="150" height="200" alt="A scientifically accurate artist's conception of a g-tube procedure"><br><i>My scientifically accurate, artist's conception of the operation</i>
General anesthesia is frowned upon in CF patients with this much lung damage, so it was supposed to be done with a local. (Either that, or Medicaid refused to pay for anesthesia, too, and they had to skimp a bit.) The sedative they administered to calm me down--via the med-port on my arm, not a new IV--was trouble-free, and left me even drowsier. By the time they got to the shot itself, I was entirely out of it. Most likely, I fell asleep just as they were inserting a tube into my nose. While very unpleasant, it was a necessary part of the procedure, as they would use it to dig around in my belly, finding a suitable spot for the permanent one they would stick in, from the outside. Once it was located, a light could be shined--via the nose tube--that would be visible from the outside, showing the surgeon where to cut.
What can I say? Whether it's amputating a limb with alcohol as your sole disinfectant <i><b>AND</b></i> anesthetic, or connecting individual nerve endings in a micro-reattachment of a hand, surgery is one of those maddeningly clever voodoo professions that you just have to admire. I'd trust many people to prescribe or suggest pills, from doctors to dentists to pharmacists; but it takes that much more to be confident enough of someone's skills that you'd agree to be torn open--your insides messed with, your oil changed, your fuel pump replaced--but I digress.
After they stuck the straw up my nose (and possibly put panties on my head, hoping to blackmail me with the pictures), I must have fallen asleep on my own, victim of the sedation and exhaustion alike. I have no idea of what happened afterwards, short of what I've read about the procedure. The next thing I remembered was waking up in the hospital, with tape on my tummy, a pain that grew more pronounced--but tolerable--with every waking moment, and Jessica beside me. So far, so good.
Within a few minutes, though, I found myself in so much pain that coughing was virtually impossible. And when you have lungs as scarred and damaged as mine, this is grade A <b>NOT GOOD.™</b> (I suspected this might happen when I discussed this with the physical therapy department, before the procedure, but was assured it wasn't a serious issue, and that I'd be back to normal "in no time." Serves me right for not double- checking with other patients.)
They put me on--what I affectionately refer to as--"Rush Limbaugh Juice" (oxycodone and acetaminophen, the active ingredients of Oxycontin and Tylenol, respectively). That only partially helped; despite valiant huffing and puffing efforts, which made me see stars, at times, I couldn't get anywhere near a decent amount of junk out of my lungs, and promptly fell ill with a 104 degree fever (on the good side, it wasn't 104 in Celsius). My oxygen saturation on room air dropped to 87%, and the fever was only stopped by something like 1.4 <b>grams</b> of ibuprofen. In the meantime, I had chills so severe that--curled up under 4-5 blankets, with the thermostat at 85--I was still shaking and chattering enough that I worried about cracking some bones.
This was the sickest I've felt since April, 2000, when I nearly died. There is no way to describe Friday night other than "a brief stint in Hell." The fevers turned out to be almost uncontrollable, so as I mentioned, I was also given huge doses of ibuprofen (1400 mg. here, 800 mg. there). Between that, the narcotic and the Tylenol equivalent, my liver was probably crying.
Despite passing the three-day mark from the surgery, the pain has only marginally improved, just enough that I'm finally able to barely tolerate chest PT (clapping, to dislodge that infected mucous). Coughing it up, after it's ejected, is still very agonizing. I am now on five different antibiotics to suppress the infection through my recovery:
<UL><li>IV amikacin;</li><li>IV aztreonam;</li><li>IV meropenem;</li><li>Oral SMZ-TMP ("Bactrim," "Septra");</li><li>Oral minocycline.</li></ul>
It would be most ironic if a surgery meant to improve my health, that was supposedly routine and had no major complications, actually wound up killing me.
And for all that trouble, did I get to use the tube, yet? Well, no... that would have happened yesterday evening, if not for one of the most arrogant nurses I've ever dealt with. The plan I discussed with doctors, and my nutritionist earlier, was to see if I could tolerate the formula they'd be pumping into me, and then increase the dose, gradually, from a token can (500 calories, 23 grams of fat) to the three or four that would be the final dose, giving me 1500-2000 calories a night.
With the first dose, 8 ounces over 8 hours, I would need no insulin (too few carbs, administered over too long a time) and, as I surmised, fewer digestive enzymes than I'd eat with a pizza or burrito that I gulped down over half an hour. But while they anticipated changing insulin needs, they seemingly forgot about changing enzyme needs!
The conversation went something like this:
- "Okay, are you ready for the tube feed?"<br>
- "Sure!"<br>
- "Take four of these enzyme pills first."<br>
- "Okay.. oka... wait, four of them?"<br>
- "Yes, that's what the order says. Four before the feeding, four more when you wake up in the morning."<br>
- "I think this might be a mistake. That's eight Pancrease MT20s; something I would not take even with a humongous steak, or Hardee's <a href="http://www.msnbc.msn.com/id/6498304/">Monster Burger</a>. I usually take 2-3 with something as small as this, and that's when I would consume it all at once. This seems excessive for an 8-hour snack."<br>
- "No, if it's in <b>The Order</b> <i>[pronounced with a zeal that the pious would use, when saying "The Bible"]</i> it must be true."<br>
- "Can you page one of the doctors so I could discuss this with them, and make sure it wasn't a mistake?"<br>
- "Look, it's in your orders. They would have set the appropriate dose, that you as the patient must follow. You had plenty of time to discuss it with the docs before!"
I was taken aback for a second by her trying to shout me down with interruptions, but politely (still raising my voice in response to hers) explained that <b>(1)</b> doctors are people, too, <b>(2)</b> this seemed like an oversight rather than an error, because I'd only need fewer enzymes while on the token dose--for a day or two, at worst--and <b>(3) </b> I was in no mood to be lectured by those who had never experienced shockingly inept medical errors, first-hand. In hindsight, I wonder if I should have made some personal attacks, too. Perhaps I'm a better man for having walked away...
Though, this conversation did result in her paging a doctor, rather than attempting to intimidate me. I will give her the benefit of a doubt and dismiss this incident as something that naturally happens when nurses are overworked and undercompensated, perhaps. The doc I got ahold of at the time was, unfortunately, not keen on messing with enzyme dosages. We discussed it at length, and I decided it would be a good idea to hold off until this morning, at least, when I could run it past the guys making these decisions...
As I knew would happen, those agreed with me and wrote an order specifying I could set my own enzyme doses, based on past needs and what I felt was appropriate. They agreed that 1 enzyme at the start, one in the middle of the feed, and one when waking up should work well, among other regimens I proposed.
The moral of the story? Patient <i><b>at least sometimes</b></i> knows best, and you are your own best advocate.
I won't exaggerate the seriousness of this. Enzyme overdoses are, from what I've read, practically unheard of. Their usual side effect is constipation and other GI issues. Nevertheless, patients with CF are already predisposed to digestive problems--and any that you <i>do</i> get may be more severe--so I had to tread carefully. In addition, I already had several other risk factors for constipation. The Barium I drank the day before the operation lists that as a common side effect; so do narcotic drugs, which I'm on for the pain.
Combined with some more private material that would make people scream <b>TMI</b> ("too much information"), and the fact I was treated like a child with a temper tantrum rather than a concerned, health-conscious adult, the enzyme dosing episode steeled my resolve to get to the bottom of it. And once again, I came out on top.
At this stage, I'll add that no one should be allowed to comment on how "insignificant" or "complication-free" a surgery "usually" is, unless they've had it themselves. In my country, Allanworld--the trigger-happiest place in the universe--medical staff would be honest, sympathetic, and never condescending. They would not downplay the side effects you'd likely experience, exaggerate the benefits of a treatment, cite improbably quick recoveries--or gruesome and rare outcomes--as the norm to convince you. They would not pretend they know better about an illness--one out of the potentially dozens they're passingly familiar with--than patients who live and breathe with just that one illness, 24/7.
I remain curious on whether <b>(1)</b> most people who get g-tubes are sufficiently okay on the lung front, that they can manage with drastically reduced lung-junk clearance for a few days; <b>(2)</b> it doesn't normally cause as much pain as it did in my case, making normal coughing something you could quickly resume; or <b>(3)</b> that it really isn't such a "minor surgery" with a "same-day discharge" as has been claimed.
Overall, I have mixed feelings about the procedure. It didn't turn out to be as benign as advertised. I won't condemn it on that basis, as most procedures aren't, and I fully anticipated how serious this one would be. (It's a running joke among patients with any chronic illness that <i>"won't hurt at all"</i> means <i>"will be barely tolerable,"</i> while <i>"might sting a little"</i> translates to <i>"you'll wish you were never born by the time it's over."</i>)
I'll consider it justified if I can put on some 20 or 30 pounds and get a reasonable BMI (body mass index), eliminating one of the "contraindications that really aren't" Medicaid used as a reason to deny my transplant. Sheer curiosity makes me want to find out just <i>how far</i> they'll be willing to stretch tortured excuses not to pay for a life-saving operation on the basis of "excessive risk to the patient."
And about those hundreds of sex offenders getting hard-ons courtesy of the taxpayer, while the poorest and sickest languish, dying because bureaucrats decide a 60% survival rate isn't good enough: You think that's the only recent story that would shred whatever semblance of naive idealism you may still possess? If so, I have "news for you!" <b>Exhibit B:</b>
<blockquote> <a href="http://www.alertnet.org/thenews/newsdesk/N27395712.htm">LA hospital suspends liver transplants</a><br>
--Routers
LOS ANGELES, Sept 27 (Reuters) - A Los Angeles hospital on Tuesday suspended its liver transplant program after <b>allowing a Saudi patient to jump to the top of the waiting list and falsifying data</b> to cover it up....
[T]he Saudi Embassy paid the $339,000 cost of the operation and hospital stay --<b> a figure 25 percent to 30 percent higher than the cost typically paid by U.S. insurance companies.</b>
The identity of the patient was not revealed but officials said it appeared that the scheduled recipient, also a Saudi, was out of town when a matching liver became available.</blockquote>
And what of the patient who <i>couldn't</i> afford that hefty bribe, but who was good enough to have his name borrowed as the paperwork-only "recipient" of the organ, to save the rich guy who wouldn't otherwise qualify for it?
<blockquote> <a href="http://www.msnbc.msn.com/id/9686727/">Switched liver transplant led to man's death</a><br>
--MSNBC
LOS ANGELES - <b>A high school principal who had been first in line for a liver transplant died less than a year after an organ improperly went to someone else and records were faked to cover the switch</b>, a published report said.
St. Vincent Medical Center removed the educator from the waiting list, but he was told his condition was stable and was left to believe his turn would still come, the Los Angeles Times reported Thursday. It never did, and Saad Al-Harthi died at age 59 in August 2004.</blockquote>
Let's hope history doesn't repeat itself as often as it used to.
It's unfortunate that real people are trapped in this dark pit, this limbo of medicine and greed (which, more and more, are becoming paradoxical bedfellows, rather than natural enemies). Both the doctors with integrity, who are forced to play by the blood-stained rulebook of HMOs and greed-driven medical policy (or move on to other careers), and innocent patients--often just struggling to save their lives, or savor the first effortless breath that others take for granted--are caught in the crossfire. It all reminds one of this eerily prophetic parody from 1998, before I even considered a lung transplant, or knew they were an option with Cystic Fibrosis:
<blockquote> <a href="http://www.theonion.com/content/node/29112">Hippocratic Oath 'Under Review' By HMO Board</a><br>
--The Onion, America's Finest News Source <i>[and boy, does it live up to its tagline!]</i>
"HMOs must be free to disclose patients' medical, personal, and financial information to insurers. How else can we determine what treatments a patient is or isn't eligible to receive? <b>If someone needs a new lung and they don't have the necessary funds to pay for it, how are we supposed to know not to perform the surgery?</b> I can't tell you how many cost overruns have been rung up as a result of doctors providing life-saving operations in accordance with the Hippocratic Oath, only to find out afterwards that the patients weren't covered. In a case like that, the surgery turns out to be for nothing. I get burned up just thinking about it."</blockquote>
I'll go out on a limb and make a prediction: Years from now, should I still be alive, I will get no apology from the bureaucrats who would have non-chalantly <i>killed me</i>, if they had their wish. <b>There will be no acknowledgment that the care I received, while slowly dying of CF</b> (example: $500 a day for home IV drugs, $14,000 for a 6-day hospital stay), <b>will have cost them much more in the long run than just paying for a lung transplant in the first place</b>. And in the meantime, they will have condemned countless other patients to a miserable death they could <b><i>NOT</b></i> escape, many with even more transparently ridiculous justifications.
And only a few people will lose any sleep. No one will care enough, and be in a position powerful enough to do a thing, that these practices will be changed. Those with the money, or insurance, won't care because it won't affect them. Patients like myself will continue putting up with it, because they have no alternative but death. Legislators will continue watching people die, unable--rather, unwilling--to take an ethical stand.