The Roy Batty Memorial Society

During the third presidential debate, John McCain was blathering about his planned healthcare policy. In it he mentioned the "gold-plated Cadillac" needs of frivolous elective procedures, including "cosmetic surgery and transplants".

Hey, John? Fuck you.

As a future transplant patient, and after being around many other transplant patients, many of whom died while waiting for an organ, transplant surgery isn't frivolous. It isn't fun. It's painful and dangerous and terrifying, and the last chance many of us ever get to stay alive. Period.

As a former P.O.W., you should understand that a little. But I guess the septic neo-con tapeworm that the Republican Party has become has burrowed into your skull and replaced whatever decency was there.

And your healthcare policy? It's a load of crap that will bankrupt thousands of people, including me. Do you know that a simple procedure like a pacemaker replacement with a two day hospital stay still costs around $40,000? Your piddly $5,000 credit won't help much if insurance won't pick up the rest, and under your plan they might not have to. Bu then, being married to an heiress, you don't have to worry about that, huh?

I was going to vote for Obama anyway, so it's not like you lost my vote. But your throwaway comment is simply beyond the pale, so you've lost any respect I may have held for you.

I will raise a drink and cheer when you lose in November.

Given that I've been handed a shorter estimate on my time here, it made sense to figure out what to do with my dammed body once I ceased to be a coherent whole (as opposed to the incoherent a-hole I can be at times).

It's a little weird thinking about your body as a future corpse. I find it popping into my head at the oddest times, like when I'm shaving my head or mixing a chocolate milkshake. What'll happen to the bits of my hair? Will the fingers that are holding this spoon puff up and liquefy, feeding worms and bacteria? Or will it all disappear in a cloud of ash? What will my dead body feel like to somebody else? Will I look like I'm merely asleep, or will I look like something out of a bad horror movie?

Most people waft through life without thinking about their remains, so the decisions of what happens usually falls to someone else -- usually a family member or a loved one. Frankly, a loved one is not in any shape to make decisions about what to do with 100+ pounds of formerly mobile you, which is why the funeral industry makes (ahem) a killing. Did you know that if you don't have specific instructions on file before your death stating otherwise, a mortician can claim your remains, pump you full of toxic chemicals (that ruin any possibility of donating an organ), stick you in a coffin and hand your family/estate a bill, usually around $10k? It's predatory, amoral, and sadly, completely legal. Fuckers.

Anyway, I decided that since I can't get my body sealed in Lucite and put in an art museum where it belongs, I’d donate it to science. Thus, I registered with the University of Washington Medical Center that they get my corpse for organ harvest, and beyond that, cadaver study by med students (credit where credit is due -- Misty did the research for this and the paperwork. I'm just enjoying the fruits of her labors). You get a nifty card for your wallet and everything.

I've been toying with the idea of writing a letter to the group of med students who get my corpse for their classes. See, senior med students get assigned to a cadaver in groups of six or so, and this group dissects their assigned cadaver over a period of weeks. It's common for the students to get attached to and a little protective of their group's cadaver, often attending the funeral of the deceased when they are done with it.

I'm thinking of writing a letter to the students and having it with my will, so that it'll get handed to them when they work on me. I'd tell them a little bit about me, and then, since my stock and trade is stories, ask them to tell me about themselves while they work. I'm a good listener, and Hell, it's not like I'd be going anywhere.

After this the body gets cremated and then buried in a group plot on the university campus. This is cool, because I get to hang out with other folks who did the same thing, and there's always the chance that some drunken goths will have sex on top of us. It's not quite a Viking funeral, but it's good enough (flaming longships aren't allowed in Puget Sound anyway).

Folks have asked some questions about the quotes I use on this site. This clip should clear up a few things:

Well, it's time to start writing in this thing again.

I stopped writing a journal because I wanted to concentrate on writing fiction and games, because I need to make some dough. I’m unemployed because I’m sick, but I’m not sick enough to get on disability (though that may change).

I also stopped writing because I felt a bit embarrassed about it. It felt like I was whining to the world about my problems, doing the emo “look at meeeee!” thing.

However, I just got an email from a young man…a kid, really…who was reading my blog because he’s in a similar medical situation. He asked me to continue writing because it helped to know that he’s not alone.

…And in telling me this, he showed me that I’m not alone either.

So I must do this. For all of us, I guess. And especially for him.

By Steve Connor, Science Editor
Monday, 14 January 2008

Scientists have brought a dead heart back to life by rebuilding it from a bare framework of tissue filled with stem cells in a study that promises to provide a new source of "reconditioned" organs for transplant operations.

It is believed to be the first time that researchers have in effect created a whole organ in a test tube, and the breakthrough could lead to ways of synthesising bespoke tissues, such as kidney, liver or pancreas, tailored to patients.

The technique, which is still experimental, involved dissolving the muscle cells of a dead rat's heart to produce an empty scaffolding of connective tissue which was then repopulated with stem cells taken from younger rats.

After several days of being cultured in the laboratory, the cells started to beat rhythmically and a few days later the reconditioned heart began to pump blood again, to the astonishment of the scientists involved.

"Initially we thought this was just a good idea, but when we saw the first heartbeats we were speechless," said Harald Ott of the Massachusetts General Hospital, a member of the research team.

It is hoped that the technique could be developed into a reliable method of building human hearts and other organs from a patient's own stem cells, which would mean that the transplanted tissue was unlikely to be rejected by the immune system, Dr Ott said.

"I see the need for more donor organs by simply working in a hospital setting on a day-to-day basis. If our work becomes applicable to humans, which we think it may, it has the potential to save millions of lives," he said.

The research team, led by Professor Doris Taylor of the University of Minnesota, has pioneered the technique of dissolving the cardiac muscle cells of the heart to produce an empty scaffold called a decellularised matrix.

"You can think of it as a bare, wooden frame for a house. We inject the scaffold with cells, we leave it in the lab for about a week and after that the cells begin to contract, and the heart starts to pump," Professor Taylor said.

"In theory the decellularised organ, now with cells, is on the way to becoming a new heart. It opens the notion that we can make any organ. At first we focused on the heart but our hope is that if you need it, we can make it," she said.

"We believe in giving nature the tools and getting out of the way, so we took nature's building blocks to build a new organ. We are not there yet, but this is a good first step," she added.

The study, which is published today in the journal Nature Medicine, shows that it is possible to strip down an organ as complex as the heart and rebuild it using stem cells taken from the immature hearts of about 100 young rats.

If the technique is to be applied in humans it would be necessary to find an equally plentiful supply of stem cells from, for instance, the skin of the patient – which may be possible using a breakthrough reported last year by Japanese scientists who created embryonic-like stem cells from human skin using genetic engineering.

"We used immature heart cells in this version, as a proof of concept. We pretty much figured heart cells in a heart matrix had to work. Going forward, our goal is to use a patient's stem cells to build a new heart," Professor Taylor said. "It opens a door to this notion that you can make any organ – kidney, liver, lung or pancreas," she said.

Other scientists have welcomed the breakthrough. "They have demonstrated that they can create a heart that looks like a heart and is shaped like a heart and, most excitingly, that they can re-establish the blood vessels that were originally there," said Professor Wayne Morrison, director of the Bernard O'Brien Institute of Microsurgery in Melbourne, who last year grew beating heart muscles from adult stem cells inside a rat.

Jon Frampton, a Wellcome Trust senior fellow at Birmingham University, said: "Although this is only a first step requiring considerable follow-up development, the study nevertheless represents an exciting breakthrough."

The process

The muscle cells of a dead heart were dissolved using a form of detergent to produce a framework of connective tissue, right. The thickest part of the heart wall is marked on the middle picture. After this process living stem cells from young rats were introduced into the framework of the heart, which started to pump blood.

http://www.independent.co.uk/news/science/heart-of-rat-rebuilt-in-lab-to-give-hope-of-tailored-human-organs-769889.html

Well, I haven't posted for a while, but I have a pretty good reason.

When Dr. Pottinger told me I had fungus in my lungs I thought he meant Valley Fever, a nasty fungus that comes from the American Southwest, but I was wrong (and hunting for another reason to hate Arizona, as if somebody needed another one). It is a test for fungus, but for a type called aspergillum...the same sort of fungus that is in the same family as bread mold.

Anyhoo, this is most likely the cause of my inability to breathe. I was told to come into the hospital, where I would need to have something called a Picc line put in my arm so that I could start a regimin of anti-fungal medications. When? I asked. As soon as possible, I was told. So I shrugged, packed a small bag, and went to the University of Washington Medical Center.

...This is when the fun began.

First, they tried to put a Picc line in my right arm (they couldn’t use my left because I have a pacemaker on the left side). For those who don’t know what a Picc line is, it’s a semi-permanent IV line that’s usually used by cancer patients for delivery of chemotherapy, but is also used for delivering a long regimen of IV drugs (http://en.wikipedia.org/wiki/PICC_line). How long, one might wonder? Well, it seems that fungus is very, VERY hard to kill, and the average amount of time one needs to be on anti-fungal meds is four months. Yes, you read that right. Anyway, after much poking and digging in my bicep, they found they couldn’t get a line in because I have transposition of the great vessels -- all my veins and arteries are backwards, so they had no idea where it could end up (and it could be in a potentially dangerous place).

With this discovery, they went to plan B, which was to put me on an oral medication called fluconazole (http://en.wikipedia.org/wiki/Fluconazole). Fluconazole tends to fight with anti-arrhythmia drugs, so I had to be weaned off my Tikosyn and placed on an evil, evil heart drug called amiodarone (http://en.wikipedia.org/wiki/Amiodarone), a drug that can cause lung damage, but something I was to be on temporarily. After several days of the changeover, they gave me my first dose of fluconazole, where I promptly went mad.

Well, it felt that way, at any rate. You see, one of the lesser talked about side-effects of fluconazole is something whimsically called “visual disturbances.” This is like calling Fat Man and Little Boy a pair of “incendiary devices.” Now, I’ve been on acid once, but it was nothing like this stuff. The hallucinations it generated were a constant, gibbering strobe light that was actually worse when I shut my eyes. Sleep was impossible, which didn’t help the situation. It took three days for the vile stuff to finally quit my system, and by the end I was having difficulty telling what was real and what was my imagination. Once the drug was out, I slept for a full twenty-four hours. I was getting very familiar with my damned hospital bed.

Since that plan didn’t work, the next was to go back to plan A, but with bigger guns. It took another three days (and several bouts of arrhythmia) to get me off amiodarone and back onto Tikosyn, and then I was wheeled off to an O.R. where something known as a Hickman line was placed in my body. A Hickman is like a Picc, in that it’s a large gauge IV line, but instead of entering through the arm it enters directly into the chest – where it tunnels under the skin and enters the jugular vein, terminating just above of the heart (http://en.wikipedia.org/wiki/Hickman_line). Yes, it’s as gross as it sounds. It looks a little like a Harkonen heart-plug from “Dune,” and one has to take extreme care with it to avoid sending a subway car of infections to your heart. So, the line took and I was placed on a drug called amphotericin (http://en.wikipedia.org/wiki/Amphotericin) and then sent home.

Having a Hickman line in my chest meant I needed to report back to the hospital every day to get my dose of meds. This wasn’t really a problem, as I was unemployed and still had COBRA health insurance. However, amphotericin is frighteningly toxic stuff and it has to be taken in a particular way. The nurses at the infusion clinic have nicknames for it such as “ampho-terrible” and “shake & bake,” because they have to shake up the medicine first and then internally roast the patient. So, one has to toke up on a huge amount of Benedryl and Tylenol beforehand so you can ride out the side effects, thus I was pretty stoned every morning while getting this stuff. Fifty cc’s of Benedryl directly injected into the bloodstream will make anybody loopy, and the infusion clinic has some very odd-sounding bells (for calling the nurses). These bells sound a bit like they’re underwater, so this combined with the Benedryl and several conked-out people arrayed in easy chairs made the infusion clinic seem like an opium den. So, I would drive to the hospital early in the morning, get doped up and sleep for several hours, then drive home and fall back asleep, then get up long enough to eat something and go back to bed and repeat this the next day.

This happened for most of December (the main reason for my not writing here), until one day the nurses were checking my heart rate and found that it had fallen through the floor. I had been feeling loopier than usual, so I had barely noticed, but having a heart rate of forty is really not a good thing. The nurse panicked and called his supervisor, who called *her* supervisor, who called a cardiologist, who promptly admitted me to the hospital. Well, I had spent Christmas in the hospital before, but that was twenty years ago and I’m an Atheist, so I wasn’t too bothered by it.

Anyway, after several tests they found that my creatinine, a chemical found in the blood, was quite high, meaning my kidneys weren’t working. This would also explain my feeling dippy, as having toxins in your blood that you would normally urinate out of the body will make you stupid. The amphotericin had shut my kidneys down, and the digoxin I had been taking was piling up in my system. Digoxin comes from digitalis, or foxglove, that old favorite toxin of Agatha Cristie, and it can cause your heart to stop if you’re not careful. So I was taken off of amphotericin, something I was infinitely grateful for, and put on a much milder drug called Micafungin (http://en.wikipedia.org/wiki/Micafungin). Micafungin is something that is normally used to treat candida but is still effective against aspergillum. So after a couple of days of getting things straightened out in the hospital, I was sent back home.

Then my Hickman line got infected. *sigh*

So, *back* to the hospital I went. I was pumped full of antibiotics, which turned out to be overkill because the infection was a low-grade one, but the docs didn’t want to take any chances. After a few days of goofing off in my hospital room and watching too much Adult Swim on the Cartoon Network while we waited for my INR to reset (so I wouldn’t bleed too much), I was wheeled into an O.R. -- only to be wheeled back out when the fire alarm went off. They took my gurney out to a semi-outdoor rotunda area, and I swear, I have never been so cold in my damned life. It turned out the fire was in the pharmacy (must be the crack pipes), and when it was out I was wheeled back into the O.R. and they yanked my line. I was awake and saw the whole thing, so if you want the queasy details I’ll dole them out in vivid detail (two words: “blood” and “earthworm”).

So now I’ve settled into a daily regimen of getting micafungin pumped in through a regular peripheral IV port that gets moved around my arms every few days. So far my galactomannen has dropped from 3.0 to 1.5, but my infectious diseases doc thinks it’ll take the full four months. I’m apparently one of the few non-HIV, non-transplant, non-cancer patients to ever get aspergillosis, so they have no idea what’s going to happen. Bully for me, being a pioneer and all. So, we’ll see what the next few months bring. I can’t hold a regular job while this is going on, but my insurance is good until late 2008 and I have some paying freelance writing gigs lined up, so we’ll keep our fingers crossed.

(...I was right and they were wrong, I'm gonna sing the I was right song...)

They finally found what's up with my lungs. FINALLY.

After two years and dozens of doctors in Phoenix shaking their heads, the University of Washington finds out in two months that I have Valley Fever, and the only reason it took them that long is the test had to be redone because a lab tech dropped the first one.

I have Valley Fever. A fungal infection. A fungal infection NATIVE TO THE SOUTHWEST. If I'm correct -- and please feel free to correct me if I'm wrong -- the city of Phoenix is in the Southwest.

...This is of course proof that Phoenix is sentient and tried to kill me.

Anyway, this means my body is not in a cascade failure, my lungs are not having a meltdown, and I can take a pill that kills the fungus and makes me go back to what passes for normal for me.

I may still need a transplant someday, but this just pushed the time-table back a while. And it's made it that much more likely I can have one. Oh, and I'll get to keep my lungs.

(Glee!)

(No, I don't think they mean those of Catholic cardinal...)

by Richard Ingham
Wed Nov 14, 2:20 PM ET

PARIS (AFP) - Scientists said Wednesday they had created the world's first cloned embryo from a monkey, in work that could spur cloning of human cells for use in medical research.

In a paper published online by the British journal Nature, a team in the US said they had created cloned embryos of rhesus macaques, using the same method that famously led to Dolly the Sheep and other genetically duplicated animals.

It is the first time that this technique has been successfully used to create cloned primate embryos.

The group generated two lines of embryonic stemcells from the embryos, according to the research headed by Shoukhrat Mitalipov of the Oregon Health and Science University in Beaverton, Oregon.

Dolly, the world's first cloned animal, was created in 1996, by using so-called somatic cell nuclear transfer (SCNT) in which the genetic core of an egg is removed and replaced with the nucleus of an adult cell.

The egg is then stimulated with chemicals or a jolt of electricity to prompt its division.

The list of other cloned creatures using SCNT includes mice, pigs, cats, cows and dogs.

Until now, though, there has been no cloned primate, for researchers have encountered obstacles that cause cell development to be catastrophically flawed.

Work on primate cloning has also stirred controversy among ethicists, who say it could open the door to cloning human beings, not just cells. In an exceptional move, Nature said it moved forward the release of the paper because of "continuing speculation."

Researchers distinguish between "reproductive cloning" of humans, in which a putative cloned baby would be born and "therapeutic cloning," in which only cloned cells would be used for medical reasons and no baby would result.

Helen Wallace of Genewatch UK, a British group that monitors cloning and other activities in biotechnology, said the breakthrough announced on Wednesday would cause "a real worry" in some quarters that it would tempt a renegade scientist to create a cloned baby.

"The clear risk of an experiment [in human reproductive cloning] is of a deformed baby and maternal suffering," she told AFP in a phone interview.

"In Britain, we don't think that the technology is going to go that far because there are laws against reproductive cloning," she said. "However, in most countries around the world, there are no legal safeguards."

Stemcells are immature cells that develop into the specific tissues of the body.

Embryonic stemcells have the highest capability of all, because they can differentiate into any tissue. Scientists hope to be able to coax these cells into one day becoming replacement tissue for organs that are damaged or diseased.

Transplanted cells from a donor, though, run the risk of being attacked as intruders by the patient's immune system. By creating stemcells that are programmed with the patient's own DNA the risk of rejection would be skirted.

Mitalipov's team said they collected 304 eggs, also known as oocytes, from 14 female rhesus macaques.

The donor nucleus came from skin cells taken from an adult male monkey housed at the Oregon National Primate Research Center.

The claim that the stemcells were an exact DNA copy of the donor monkey's genetic code was validated independently by a team led by David Cram of Monash University in Melbourne, Australia.

That confirmation comes on the heels of a scandal surrounding earlier claims on cloning. In 2004, South Korean scientist Hwang Woo-suk announced he had created 30 cloned human embryos from which he derived stemcells, but his data turned out to be fake.

In a commentary published in Nature, British scientist Ian Wilmut -- Dolly's "father" -- and colleague Jane Taylor of the Centre for Regenerative Medicine in Edinburgh, Scotland, said the new advance's brightest benefits may lie not in creating replacement tissue from stemcells but in unlocking basic knowledge about inherited disorders.

By making patient-specific cells, doctors could obtain cells whose genome would provide a telltale of a disease. These cells could be compared with healthy counterparts to see what is wrong, and a library of drugs could then be screened to see if a treatment is available.

"Ultimately, this approach might lead to treatments for neurodegenerative diseases, some cancers and psychiatric disorders," the pair said.

Today I went to to the Sleep Disorder Clinic at Harborview Medical Center in downtown Seattle. Harborview is a sibling hospital to U-Dubb, but is quite a bit smaller. It's also got a bit more of a downtown feel to it, making it a bit more James Brown to U-Dubb's full orchestra.

I actually don't have a sleep disorder per se, or at least an obvious one if I do, but apparently it's common for CHD patients to have a modified version of sleep apnea where the body literally forgets to breathe. This obviously makes the body unhappy (that whole choking thing and all) and lowers the overall O2 in the body, etc. It's not know if I have this, but my new cardiologist, Dr. Karen Stout, believes in being thorough. I met with a Dr. Griebe, a tall man who looked remarkably like the actor John Turturro, and an Dr. Watson (no, really) who looked a lot like Dr. Bunsen Honeydew, and it was decided that I would return on Dec. 27th for an overnight sleep study. So, more on this later.

One nice bit of news from all this was that my weight is up to 94 and my O2 is mysteriously back up to 92. So why was it down to 86 a few weeks ago? Nobody knows as of yet, or at least they're not telling.

Another bit of news comes from Dr. Pottinger, the Infectious Diseases doc. It seems that according to his tests, I am a bar of soap -- completely clean. No fungi, no toxiplasmosis, no hepatitis, no HIV, no TB, no bacterial growths, and none of the exotic diseases that I can't spell that he also slipped in. No nothin'. So, that's good news, but we're back to square one.

My best four-legged friend and legal adviser Harrison has been ill for a while now, and the vets have finally localized what: a tumor in his chest. It seems to be benign, but it's gotta come out. The irony is that he needs a surgery that is similar to mine. No heart surgery, mind you, but they have to open his entire ribcage to get it out.

I'm worried sick about him. He's lost weight for months and being underweight is dangerous with surgery. The prognosis is good and his surgeon is one of the best veterinary surgeons in the state of Washington, but I'm still climbing the walls.

It's weird. I now have much more empathy for my parents and my spouse and anybody who sat in the waiting room while I was under the knife.

I also know--intimately--how my fuzzy little guy is going to feel after chest surgery. Having your ribcage cut open and then welded back together hurts. And I can't explain anything to him...all I can do is give him his pain meds for the next month and hope he doesn't hate me.

The surgery hasn't been scheduled yet...that's for tomorrow. Tonight I'm going to give him a can of wet food and pet him until my hand falls off.

I am always hungry. I mean, always hungry. I eat like your average high-school football team and my grocery bills are staggering. Yet I still weigh about 92 pounds. I now have great empathy for the ever-hungry Russian witch, Baba Yaga the Bony (but I have no plans to eat any Cossacks).

My new (Seattle) cardiologist, Dr. Karen Stout, says my caloric demands on my body are huge because I need to eat enough nutrition for my heart and my lungs and for the rest of my body. So, I'm eating for three, in a sense.

(Joy! I'm pregnant with twins! ....no, wait...)

I've recently purchased a crock pot to help facilitate leftovers. I went conservative and got a 4-quart, but I'm beginning to suspect I need a larger one. Misty and I tend to go through a full crock pot of food in two days; she has some for dinner and takes a bit for lunch the next day, and the rest disappears into me. I've honestly contemplated buying and roasting a full turkey -- for just myself. No, I'm not kidding.

On the bright side, I'm becoming a better cook. And speaking of cooking, I'll be in the kitchen. I'm hungry again...

Well, hello again. I've decided to start blogging again (is blogging even a word?) after these many months, ostensibly to hand out parcels of information about what's going on with me medically, but also to wax philosophical and to bitch when I'm cranky. My writing blog is about, well, writing (fancy that), so I thought I'd revive a more personal journal.

I've re-created this blog as The Roy Batty Memorial Society, after the character from the film "Blade Runner" (and the story "Do Androids Dream Of Electric Sheep" by P.K. Dick). I feel a strange kinship with Roy, a synthetic being who wished for more life than the five year span he was programmed to have. I may not go to his extremes (homicide is terribly impolite), but like him, I refuse to simply accept what is happening to me -- and I think there are many other people, be they other congenital heart folks like me or people with cancer or diabetes or lung scarring or whatever is killing them who feel the same way. We of the Roy Batty Memorial Society refuse to go quietly, if we have to go at all.



In a more hopeful vein, I intend to post any nifty medical breakthroughs I hear of, such as stem cell research or artificial organs. Most of it will probably be related to hearts and lungs, but if I become aware of other stuff I'll be sure to bring it up as well.

Who knows...if artificial organs become commonplace, I may end up being more like Roy Batty than know...

Hello everybody...Jason here, popping back in for a closing post and a bit of reassurance. I don't normally use LiveJournal (or any other sort of blog), so when we got home from Chicago I ceased posting because the Great Chicago Misadventure had stumbled to an end (in my mind, anyway). After getting a few frantic emails and phone calls to see if everything was okay, I realized I had left this hanging, and for that I apologize.

At any rate, we're doing fine. I managed to get the Tikosyn after a weekend of wheeling and dealing on the phone, and something tells me that I'll have to do more of the same in the future. However, it is well worth it. My heart rhythm is nicely were it's supposed to be, and none of nasty side effects of Sotalol are manifesting. Those of you reading this who are CHD patients and on rhythm drugs should look into it. Without the bradycardia I'm not as worn out all the time, nothing is messing with my serotonin levels, and best of all, I don't feel sick to my stomach all the time. For the past year food has been little more than tasteless glue that I've had to choke down, but now food tastes like...well, FOOD again. I've been cooking a lot, and cackling with glee while I pour hot sauce on everything. I think I'll be able to put back the fifteen pounds I lost this last year.

I do indeed feel much better. Now, I'm still not going to win any decathlons without hamstringing the other athletes -- which actually sounds like evil fun, so I should do that later -- but I feel more like myself than I have in a while. I admit that I do tend to linger in bed and hide under the covers, but that's mostly to avoid the flaming ball of hate in the Arizona sky and that our bedroom probably has the cleanest air in Phoenix. At home I feel pretty good, but stepping outside is like inhaling powdered fiberglass. All the particles and ozone and lack of a certain gas called oxygen isn't healthy for anybody, let alone a guy with lungs like mine.

The cats were delighted by our return, skipping past the usual "where the Hell have you been?" snubbing cats do and going straight to purring, gnawing on our ankles and barfing up hairballs with glee. My work was much the same, only with less hairballs, and life quickly settled back into its regular currents. Explaining to people why there was no surgery has become a regular task, much like doing the dishes, and only a few have completely freaked out. I think those few people have issues with their own mortality as it is, so any talk about terminal illness, even in another person, sends them through the ceiling.

On that front, I've come to a conclusion of my own. Dr. Deal is brilliant and has solved a major problem for me (even without the Fontan revision), but I think she's confused my lifespan with Jennifer Lopez's acting career. I've been told since I was ten that I wouldn't live very long, and I'm thirty-seven now. I plan to go on with my life as normal, and I fully expect to outlive the lot of you. Some cyberpunk, morally questionable science discovery will pull my ass out of the fire, and in the interim I intend to be too cranky to die. Life is for the living, and all anyone can do is do the best they can with what they have.

As I mentioned at the beginning, this is the last post for this particular journal. If you need to contact me, send me an email at storybuilder@yahoo.com. I will continue to diseminate news through the emailed Tatooine Dispatches (yes, one is coming up soon), and most of the rest of you can find me back on ACHA or on RPG.net.

Thank you all for your replies, concern, and well wishing. You all made his whole thing that much better.

Take care,

-Jason (and Misty)

Finally got his meds yesterday and today we plan to mostly rest.

(misty here)
Yesterday was an irritating day full of calling every doctor we knew - on call doctors in Chicagos, dr's here, even doctors that we found the phone number for but who we didn't know.
We also called all the local pharmacies.
Around 4pm, we found a doctor that had the right permission to prescribe the medicine, we found a pharmacy that had the right permission. The dr called in the prescription, we drove all the way to mid phoenix to get to that pharmacy...and the pharmacy says they don't have any of the drug. There is a pharmacy down the street that has some by accident, but they don't have the 'special permission' to sell the stuff.

Utterly infuriating is how I'm describing it.

The Arizona doctors are like "what? I've never heard of this medicine, just stop taking it and go back on your old stuff". This advice was just mindboggling..since the 'old stuff' has a 3 day lead time as well and works when his pacemaker is set to 60. J's pacemaker is set to 80..so what would stopping cold turkey and going back to his old drugs do to him? They didn't seem too concerned but I sure am.

The Chicago doctors were really working hard to help - but it turns out that none of them have the 'special permission' to prescribe this Tikosyn medicine. I have no idea how Jason ended up on this medicine if no one had permission to give it out. We were sent home with only one dose (and that was after a fight - no 14 doses in a bottle as listed by one of the nice ACHA people)

So today we are going to call Pharmacy #2. Beg them to transfer the Tikosyn to Pharmacy #1, and then if they do that, drive back to Pharmacy #1 and buy the drug. I'm sure more red tape will get in the way.

We need to find this medicine for Jason. Since he's been on it, he's been cheerful, hungry, can breathe better. The stuff won't cure him or fix his lungs, but it makes him feel so much better.

(misty here)

So we are finally home and things were looking surreal. We took showers, tried to sleep, played with our kitties.

Until this morning when we listened to our messages on the answering machine. Fry's Pharmacy called and said "opps. won't have the new medicine in till Wednesday".

This is a huge problem. This is the med that J was prescribed for his erratic heartbeat and the one that really helped him feel better the past few days. Its also a dangerous med - thus the reason we had to sit in the hospital for 3 days to monitor him. In order to get this annoyingly rare medicine that he was put on, we have been jumping through hoops and were assured that it would be waiting for us in the morning when we got here. We fought with the pharmacy in Chicago over this and they would not give us enough of the medicine to see us through the holiday weekend in case there was a problem.
He cannot go without it for the next 4 days - we just spent 3 days getting him on it. I don't care where we have to drive to get this medicine.

I don't expect today to go well. We had planned on getting food and sleep. But now, we are going off on the wild medicine hunt. GRRR

Jason here.

It's about 2:30am in Chicago. The hospital is quiet, save for the scuff of nurse's shoes out in the hall and the occasional beep from a monitoring device. It feels like the building is holding its breath and I'm afraid to make any sound, as if I'll wake up the entire world.

Misty is asleep on the couch/bed contraption by the window, huddled under a thin blanket and probably quite uncomfortable. I keep looking at her, watching her sleep -- not in a creepy Hollywood stalker way, mind you...I'm just amazed that I am lucky enough to have somebody like her in my life. She is my pillar of strength, and I don't think I could have weathered this storm without her. No matter what happens, I've won one of life's lotteries. If you're fortunate to have found true love, everything else is just gravy. Or badly burned casserole, if life hands you the unpleasant stuff.

(I just know she's going to slug me in the arm when she wakes up and sees this, muttering something about how her co-workers can read this.)

On the subject of Gravy, we had a visitor this evening. Thankfully it wasn't a clown, but a fellow gamer from RPG.Net, a gent who goes by the handle Heironymous (which you Faire folk will note is highly ironic). He couldn't stay long, but is was very kind of him to visit (thank you again!). He also brought swag! I was gifted with vols. 1-4 of the comic strip "Sluggy Freelance," plus the books "A History of Pi" and "The Tao of Pooh" to help me fall asleep (his words, not mine). His wife also send a plastic bag full of yummy brownies. Yes, the normal kind.

Tomorrow should prove to be a busy, busy day. I'm not sure when I'll be discharged, but I've been told that they'll try everything they can to expedite it so that we can make our flight out of O'hare. Cue the "Benny Hill" music and much rushing about, I suspect. One potentially ugly problem has been more or less averted. It seems that my new medication, Tikosyn, is a rare drug and few pharmacies carry it. Even more interesting was when Misty went downstairs to the hospital pharmacy to get a scrip filled, she was told "This is a PEDIATRIC hospital. We don't carry ADULT medications here." Never mind the fact that this same pharmacy has been where my Tikosyn has come from this past week. So, we complained to the nurses who complained to the doctors who got on the phones and rolled a few heads, and the medicine magically appeared. Ten bucks says is disappears again tomorrow. Anyhoo, once I get sprung, we're then off to locate a bus to take us to the "El," or elevated train tracks, to the airport.

I must admit, I'm nervous about going home. Everything has changed in my eyes. It's subtle, but everywhere. This trip has been a really fucked-up version of Joseph Campbell's Hero's Journey, without any of the heroics but including the metaphorical journey to the Land of the Dead (no, I don't mean Bingo Night in Atlantic City). Besides, Dr. Deal would make a kickass wise-woman. But the nervous feeling is there. I'm afraid of how I'll see our apartment and all the crap on my computer and how we live. I'm afraid to go back to work and deal with my co-workers like nothing happened. I'm afraid to make a big deal out of this trip, and I'm afraid not to. There's been a paradigm shift in my life, and I still have yet to figure it out.

But then, we never really get to figure everything out, do we?

I suppose I should power this laptop down and try to get some sleep. Or at the very least stare at the oddly soothing peaks and valleys of my heart monitor. The mornings here comes two hours too early as it is.

Jason here...The boy next door seems to have been tranquilized, so we were allowed to leave the room (we share an adjoining hallway with him). We went over to the Brown Family Center, which is just down the hall, because we heard the therapy dogs had rolled into town.

The therapy dogs turned out to be a lone therapy dog, a tiny beast named Sasha. She was a very cute lapdog if indeterminate breed who must have clocked in at about eight pounds. Misty and I giggled about how our cats would have either adopted Sasha as a lost kitten or simply eaten her. She was a very sweet dog though, and she must have some inner core of ferocity because her favorite toy was a squeaky, red rubber ball -- obviously the nose of a vicious clown, torn off in battle and carried about as a trophy. Hail Sasha, warrior and dust-mop.

After Sasha left, the Family Center started a game show hosted by a ventriloquist and his dummy, prompting Misty and I to flee back to the room. I was hearing the siren-song of the urinal anyway.

Jason here...Wow. A nine-year-old boy became a cyclone of destruction in the next room and had to be pinned to the floor by five security guards right outside our door. They managed to get some sort of sedative in him long enough for them to wrestle him back into the room, but we can still hear him (he sounds horribly like a screaming chimp. No joke here). Poor kid. I can only imagine what's going through his mind right now.

But damn...hurling around five big security guards like that. They make kids strong out in Chicago...

J and I are currently barricaded in our room. Right outside our door are 5 burly security guards, and some nurses. A 9 year old child is having hysterics to the tune of hitting people, knocking over trash cans, screaming bloody murder, banging his head on the door.

The poor kid is currently screaming "get off me" and spitting on everyone he can reach. He's handcuffed and on the floor as the nurses are running for a sedative. The guards are nursing various bloody noses and such.

Apparently the child's mother is just standing beside him wringing her hands. (J and I peeked out the window)

The child is now screaming "Bitch, Bitch I'll KILL YOU" and continuing to spit.

I have not heard someone have a screaming tantrum like this since my days as working as a jail guard over in Juvie Hall.

Jason is commenting that this is a clear case of demonic possession but man, I feel so bad for this kid. This kid is in some serious mental pain.