Archive for the 'medical' Category

For Shelly

Wednesday, April 30th, 2008

I was greatly saddened recently to learn of the death of a fellow blogger in Oregon. I first heard from Shelly around the end of 2005, when she found my blog after searching for one of my keywords (“pulmonary fibrosis”). She wrote me:

I found your blog when I first started this thing last month. I was interested in PF and lung disease in general, that’s how I found you. It was a coincidence that I found your writing interesting, as I too am a free thinker (I prefer that to dirty liberal) and thought your musings…..for lack of a better word, amusing!

As this message hints, we shared a number of things in common besides the fact that both of us had pulmonary fibrosis, including a sarcastic (some might say “twisted”) sense of humor and a general disdain for George W. Bush. For the next couple of years, we continued to send each other links to the latest news about current research and developments in lung disease, updates on the current state of our health, not to mention the occasional poop joke.

Shelly’s illness was, unfortunately, much worse than mine due to the fact that she had suffered from rheumatoid arthritis since the age of 15, and large doses of prednisone over the years caused her to gain weight which further contributed to her lung problems. Nevertheless, she was one of the most positive, funny, upbeat people I’ve ever known. For the last year of her life, she was in the process of qualifying for a lung transplant (which involved a diet and exercise regimen) and was excited about the new opportunities a transplant would bring her. She was well aware of the seriousness of her condition, but her holiday greeting for 2007, while expressing a prescient fear that this might be the last Christmas she would spend with her family, also contained this message of optimism:

I just wanted to wish you a very happy and safe Christmas. May you and your families be blessed with a wonderful evening, eat too much, spoil your loved ones, and remember to tell those special people how much you love them and what they mean to you. For me, here’s to a new year! To a second chance! No more oxygen hoses and scooters. No more being scared to go out for long and having people stare at me! Oh and no more Atkins diet!!! Here’s to walking my dog and fishing with my daddy! Road Trips with Mike. To taking my nieces to the park or even Disneyland! Here’s to camping and SWIMMING! Oh and to sitting near a burning candle!

TO NEW LUNGS & FRESH AIR!

She was supposed to go to Seattle last month for her pre-transplant medical evaluation, and hoped to be placed on the waiting list for new lungs shortly thereafter. However, when I checked her web site recently to see how the visit had gone, I was shocked to learn that her condition had deteriorated very rapidly after the holidays, and she passed away on February 24. She was only 32 years old.

So here’s to Shelly; may she rest in peace, and my deepest condolences go out to her friends and family. It was her custom to close every message and blog post with the following words, so it seems most appropriate for me to end this post with them as well:

“Life is not measured by the breaths we take…but by the moments that take our breath away!”

Robert Goulet dead at 73 from IPF

Tuesday, October 30th, 2007

I was deeply saddened this evening to learn that Robert Goulet, the big-voiced baritone whose Broadway debut in “Camelot” launched an award-winning stage and recording career, died this morning in Los Angeles while awaiting a lung transplant.

Goulet had been hoping to receive the transplant at Cedars-Sinai Medical Center after being diagnosed only last month with a rapidly advancing form of pulmonary fibrosis.

Such is the insidious and unpredictable nature of this disease; it can whack you in a matter of weeks, and while I feel extremely fortunate that my own pulmonary fibrosis has remained relatively stable for at least the last two years, this is an unsettling reminder that there are no guarantees and that a similar decline could come at any time.

Goulet had remained in good spirits even as he waited for the transplant, joking with friends, family, and hospital staff. However, in the last few days he had been heavily sedated and breathing through a respirator while awaiting a donor organ. Unfortunately, a suitable donor could not be found in time. More information is available here, and on his web site, including links to information on Pulmonary Fibrosis and lung transplantation.

While best known for his singing, Goulet never took himself too seriously. His good-natured ad for Emerald Nuts, in which he would sneak into office cubicles in the afternoon and “mess with your stuff”, was one of the big commercial hits of Super Bowl XLI.

God bless you, Mr. G.

Hunka Hunka Burnin’ Toast

Tuesday, August 14th, 2007

Recently I lamented in this spot how I had been unable to find a suitable fever thermometer audible to my rock-and-roll dulled ears. Fortunately, a solution has been sent in by alert reader April, who obviously has had much experience taking the temperature of her baby boy, Aiden, as he has valiantly fought back a variety of childhood illnesses. Way to go, guys!

Thanks to April for suggesting a product made by Vicks called the “Fever InSight” thermometer, which not only takes a reading in under ten seconds, it then lights up green, amber, or red depending on the results. As you can see from the photo, I am definitely an “amber” sort of guy, confirming the fact that I seem to have a relatively constant low-grade fever. I’m not exactly sure what this means, but I intend to ask my doctor about it when I see him next week.

Yes, I am just now about to learn the results of my bronchoscopy from almost two months ago. Due to confidentiality issues, he does not wish to discuss the matter over the phone with me (who knows, Dick Cheney might be listening in) so he’s insisted that I make the 300 mile round trip to Houston to hear the latest news about the state of my lungs. However, we’ve managed to schedule a couple of other activities around this visit as well, and have also planned a festive dinner with friends at the venerable Joe’s Crab Shack, so the trip should be productive.

Perhaps the weather has something to do with my feverishness. After months of rain and outdoor temperatures that have been lower than normal, we have finally slipped into our typical Texas summertime pattern; it’s been over 100 for the last couple of weeks, with no letup in sight for perhaps another month. This is the price we pay down here for not having to deal with snow and ice in the winter, although I’m not sure which is worse.

But in case my slightly elevated temperature requires medical attention, I will have no shortage of resources to call on. Just today, in fact, I received the following lousy spam helpful advice via anonymous email:

“Benefit from the Shelter, Effectiveness Not Expensive Prices and Eminence Advantage the majority trusted Web-Based Canadian Medical Supplies. We contain over 2000 Trademark and Standard remedy. We are the prevalent internet medical store, we are able obtain at the minimum workable prices. We then send our funds onto you.No need to have a medical instruction to purchase from our organization. We can even set you up on instant re-purchase so you don’t have to uneasy about running out of you medical drugs.”

Who knew the Internet was home to such friendly, helpful people? With my remarkable powers of insight, I have determined that English was probably not the primary language of whoever wrote this message, however I must say I am looking forward to them sending their funds onto me as soon as possible.

While we’re on the subject of burning, it looks like I will not be heading to the Nevada desert for Burning Man again this year after all. As I write this, some 25,000+ people are making their final preparations for a trek to the playa during the week leading up to Labor Day, where they will construct a city out of nothing, enjoy a week-long celebration of art and community, and depart leaving behind no trace whatsoever of their experience there. (You can see a remarkably detailed bird’s-eye view of last year’s event in Google Earth by clicking here.) Huge interactive art installations are constructed on the desert floor, groups of people gather in elaborate theme camps, and everyone dresses outlandishly (if at all). The festival started in 1986 as an impromptu annual gathering on a San Francisco beach, and has turned into an highly-organized if not exactly mainstream event. Although not quite the debauchery of sex and drugs that marked its early years, Burning Man still maintains an air of spirituality and counterculturalism, and in this respect is somewhat like the Glastonbury Festival in the UK — only without the music. The other big difference is that Burning Man is held in the middle of a harsh, barren desert with no shade, water, electricity, or other “creature comforts” for miles around. Temperatures range from near freezing at night to over 100 degrees in the daytime, and freak windstorms can whip up out of nowhere, driving the alkaline playa dust into every crack and crevice of your body. But the very act of not just surviving but thriving under the harsh conditions creates a camaraderie among the participants that is hard to describe, and I have wanted to experience this event for years. However, considering my need for supplemental oxygen and the generally fragile state of my health, this difficult environment would not be ideal for me — let alone the fact that it’s a 2,000 mile drive to get there.

Oh well, maybe next year. If I do go, I’ll be sure to bring my new thermometer.

Make Money Fa$t!!

Tuesday, August 7th, 2007

Today I’m going to tell you how to make a million bucks.

I have an idea for a product, and if you’re the first one to patent this thing and get it to market, I guarantee that it will sell like hotcakes. Yes, I see you’re skeptical my friends, but let me explain and it will all make perfect sense:

Remember back in the good old days before fever thermometers went digital? They had a thin strip of mercury inside them which you had to “shake down” before taking a reading, and then struggle to hold the damn thing just right so you could read the result? You’d try turning it a little bit each way to catch the light, finally if you were lucky you could see the bar. Of course, then you’d have to figure out what each little mark represented to determine if your temperature was 99.1, 99.2 or 99.4, etc. Of course, stick thermometers like this have almost disappeared from drugstore shelves, and not just because they’re hard to read. The glass can break if they’re dropped, and the tiny amount of mercury they contain could be hazardous.

Today, thermometer technology has advanced considerably. When I was in the hospital for my procedure recently, I was amazed that they took my temperature simply by waving some sort of a wand across my forehead, giving an instant reading without ever physically coming in contact with my body. At home, it’s also fairly common to use “in the ear” thermometers to get a reading within a few seconds, which is great for small kids who can’t hold still long enough, or have trouble getting a conventional thermometer under their tongue. But while these devices are very convenient, they’re still relatively expensive, in the $30-50 price range. By and large, the glass stick thermometer has been replaced in the home by the plastic digital thermometer; they’re cheap ($5-10), accurate, and quick — generally giving a readout in under a minute. They also have a design flaw, and this is where somebody stands to make some big bucks.

As the boomer population ages, they become more health-conscious and for various reasons, may need to monitor their body temperature more often. But having spent a lifetime listening to loud rock and roll music, often the first bodily function to go south (alas, among many) is the hearing — especially at high frequencies.

Are you beginning to see where I’m going with this?

All of the digital fever thermometers on the market these days signal that they have achieved a stable maximum reading by beeping at you. If your high-frequency hearing ain’t what it used to be, there is no freaking way you are able to hear this sound. You must wait until you think the damn thing has been in there long enough, and hope you have guessed correctly. Most often, you wait way longer than necessary. What the world needs is a digital fever thermometer with a bright red LED on the very end of it that will blink at you to signal that it is ready. There is currently no such device on the market.

I know, because I have spent the better part of two days looking for one.

So, I present this idea publicly in the hope that someone will take the ball and run with it. I guarantee that you will make a fortune from all the old codgers like me whose hearing has gone to hell, and who will snap these things up like candy. I ask for nothing in return, except this: when you finally make this product, please send me one. I want to take my damn temperature.

Too much information

Wednesday, July 4th, 2007

I’ve been trying to think of something clever and blogworthy to say about my bronchoscopy last week, but there’s really not much there to work with. They went in, they looked around, they took some samples, I went home. That pretty much covers it. I won’t know for sure what the results are and what they might mean for at least a few weeks yet, as my doctor left town for an extended vacation immediately after performing my procedure, no doubt thanks to the huge windfall he reaped from my insurance company. I expect to at least get a postcard.

However, before donning his Serengeti polarized Lucca sunglasses and jetting off to the French Riviera, he did share with me that my CT scan this time was virtually identical to that done in May of 2006, which indicates that my pulmonary fibrosis has not advanced further into my lungs in over a year now. The implications of this are unclear, as this leaves me in a state of medical limbo with no established course of treatment. While there’s no denying that this is fantastic news, it’s also a bit disconcerting in that it calls into question the entire diagnosis of IPF; one of the defining hallmarks of this disease is its insidious progression over time. Of course, the sixty-four dollar question here then is “if it’s not IPF then what the hell is it?” and my doctor is hoping that the lung samples he obtained will shed some light on this puzzle.

Any number of things can cause scarring of the lungs, and he did say that from all appearances, it looked to him as if I experienced some “event” which damaged my lungs and then just … went away. However, this means that at some point during the last five or six years I would had to have inhaled something vile which would have caused me considerable distress, and would surely have been something I would remember — and I can recall no such experience. Another less likely possibility is that I was exposed to something in my environment slightly less toxic but for a longer period of time (asbestos? mercury? sulphuric acid? Republicans?) to where I might not have noticed the gradual irritation. As I say, hopefully micro-examination of the samples of lung tissue removed this week will give us a clue.

The upshot of all of this is that if my condition continues to remain stable, there’s a chance that I will NOT need to have a lung transplant after all, and I have seriously mixed emotions about this. Transplantation is and always has been a treatment of last resort, when there is no other option for survival. Although there have been tremendous advances in medical science even within our own lifetimes, major organ transplantation is still fraught with imperfections and complications. Because the body will always consider the transplanted organ to be an invading foreign object (or, the way a nurse once described it to me, the internal cells say to each other, “This is not me! Attack!”), the immune system must be suppressed to the point where even the slightest little infection or virus could be life-threatening. Even under the very best of circumstances, typical survival after a lung transplant is perhaps five to seven years, although a few individuals have done much better, getting ten years or more. If the doctors think I have a good chance to live at least that long without it (at one low point in 2004 my remaining life expectancy was estimated at 18 months), then I will be more than happy not to face what has until now been the looming specter of this complicated and risky surgery.

But on the other hand, what has inspired me and kept my spirits up as I have battled IPF over the last several years is the thought that once past the recovery stage, a transplant would allow me to do the things I love that I can no longer do with ease. I’ve said this before, but what I miss most is my ability to do those simple little things I used to take for granted, like riding a bike or washing the car, not to mention the esoteric stuff like walking down a beach at sunset. The idea that I will be chained to this oxygen hose for the rest of my natural life is a bit depressing, but I am coping with it by realizing that this is buying me valuable time. Who knows what kind of breakthrough procedure or medication might emerge in the next few years? The Holy Grail would be the discovery of a way for the lungs to regenerate tissue and “heal” themselves, perhaps using stem cells which could theoretically adapt to whatever part of the body was required. However, this is not likely to happen any time soon, thanks in large measure to George Bush and his continuing veto of funding for this area of medical research. Instead, he would prefer that surplus embryonic tissue be simply dumped in the trash as it would be anyway. I can’t tell you how much it galled me a year ago when Shrubya stood at the White House on a platform surrounded by cooing babies allegedly “adopted” from frozen embryos and claimed that stem cell research “would support the taking of innocent human life in the hope of finding medical benefits for others. It crosses a moral boundary that our decent society needs to respect.”

To this I say “bullshit”, but perhaps a more civil and articulate response came from Illinois Senator Richard J. Durbin who said, “Those families who wake up every morning to face another day with a deadly disease or a disability will not forget this decision by the president to stand in the way of sound science and medical research.”

That sounds a whole lot better than “bullshit,” but it means exactly the same thing. We are one of those families.

Whoops, got off-topic there for a bit, sorry! I will say that my procedure last week was about as pleasant as it could possibly be considering the circumstances, and dare I say, almost enjoyable. It’s an unfortunate fact that over the last few years I have become somewhat of a connoisseur of hospitals, having been treated, poked, or prodded in at least six major medical establishments since 2002. Last week’s experience at St. Luke’s in Houston was one of the best. Check-in paperwork was smooth, fast, and efficient. The nurses treated me like a VIP. The mutual respect and camaraderie between my doctor and the support staff in the operating room (at least, as best as I can remember before the Versed kicked in) was obvious; everyone present was good-natured — dare I say “saucy”? — yet extremely professional. It was about as much fun as one can have under anesthesia (me, not the staff, that is). The doctor chatted with Mrs. Toast about the results for a good fifteen minutes afterwards and I was released in short order. They even gave me a lollipop. What more can one ask from a medical institution?

In fact, it was so much fun that I am going back tomorrow to be probed again, only this time from the opposite direction. I will spare you the details, my friends, except to say that this procedure has safely been performed on millions of ordinary people, and by “ordinary people” I mean “those who have reported being abducted by aliens”, only without the “prep”.

“Prep”. That’s such a friendly, innocent-sounding word isn’t it? Let’s all say it together: “prep”. Just rolls off the lips, almost like a kiss. So simple and unoffensive, like something you’d do for an exam, a business meeting, or a vacation. Just four little letters.

Which give no freaking clue as to the horror that will follow.

Indeed, there is so much vast potential for mining boffo material from this event, that surely more than one stand-up comic has based an entire 30-minute routine around it. But this ain’t the Improv here, folks.

Nevertheless, it’s been recommended that I do this asap, so I’m going to get it over with. While y’all are enjoying your traditional Fourth-of-July family backyard BBQ today, think of me and the liquid diet I will be on, and the … well, maybe it would be better if you didn’t think about it at all, actually. I will promise you this: even though I finally solved my digital camera conundrum and bought a brand-new supercool Fuji Finepix (more about that in a later post), I will not, I repeat, will NOT pull a Katie Couric on you and post full-color, er, “interior” photos of the procedure afterwards. Some parts of Mr. Toast are just too frightening to be seen in public.

Anyway,

Happy 4th of July!

Back to the Big House

Sunday, June 24th, 2007

I’m setting off to Houston next week for yet another Hospital Adventure; this time, my doctors are going to try and dig a little deeper — quite literally — in an attempt to determine exactly what’s going on inside my lungs. The continuing relatively stable state of my pulmonary fibrosis has the medical establishment a bit perturbed, so they have come up with this fresh plan to surgically extract more cash from my insurance company. Oh wait, and it might benefit me as well.

On Tuesday, I’ll get a CT scan so my doctor can pinpoint the specific area of interest, and the following day I’ll have a transbronchial procedure to remove some tissue for closer examination and biopsy. Fortunately, this minimally invasive technique involves no external incision, only snaking a slender tube through my windpipe and into my lung. Mounted on the end of this tube is a tiny video camera and a delicate surgical instrument (see magnified photo, right) which will be used for tissue removal.

Ha ha! Just kidding, although the analogy to this tool (except miniaturized and maybe a bit more sterile) is probably not that far off the mark. The good news is that my recovery time will be short, and I should be released from the hospital after only a few hours. I won’t be under total anesthesia, but will likely get a dose of Midazolam, which will leave me conscious enough during the procedure to respond to directions (i.e., “turn your head to the left”, “say ahhhh”, “open your wallet and give the doctor all of your money”, etc.), but also produces amnesia so that when I come out from under I will have no recollection of what happened. It’s a fairly common surgical drug which I had during my upper endoscopy last year. I’m told that patients often wake up asking “are we ready to start yet?”, after the operation has been completed.

I’ve also been told there is a small chance (about 5%) of complications during the procedure, specifically a collapsed lung. But I’ve also been reassured that they prepare for this unlikely possibility, and should it happen, they will be able to take care of me. I envision them calling “Hey Leroy, get in here!” as a gas station mechanic in coveralls races in to the O.R. with an air hose to re-inflate my lung. Leroy no doubt has a Swiss Army Knife in his pocket as well.

I will post afterwards and let y’all know how things turn out. Wish me luck!

The good news would be the lack of bad news

Saturday, March 31st, 2007

I’ve been in the hospital in Houston again this week for my quarterly ritual of being poked, prodded, and stuffed into an airtight box while I blow into tubes. It’s so much fun, I just can’t tell you. While there’s been some minor variation in my pulmonary function numbers, the one that’s the most general indicator of the state of my health (FVC, or Forced Vital Capacity) has remained steady at 57%, exactly where it was when we went through this procedure three months ago. The fact that I have not declined further since then is great news, considering that my doctor had been concerned that my December numbers, which had dropped from the previous summer’s high of 61%, might have indicated that I was on the verge of cratering. A rapid falloff in lung capacity after a period of relative stability is not uncommon in Pulmonary Fibrosis patients. Had I continued to drop below his “magic number” threshold of 50%, I would right now be anxiously eyeballing a beeper, expecting a call to come at any moment summoning me to report to the hospital to have my lungs transplanted. The fact that I don’t have to worry about this for at least the next three months is a tremendous relief.

But at the same time, it also means that I will continue to remain stuck in this limbo state of not sick enough to be transplanted, yet not well enough to carry on most normal activities. As long as I am sitting still and not exerting, I feel fine … and in fact at these times it’s easy for me to forget that there’s anything wrong with me at all. However, once I stand up and start moving around, I am quickly reminded that pulmonary fibrosis has rendered my lungs unable to efficiently do their biological job of exchanging carbon dioxide for oxygen in my bloodstream. I become severely out of breath after just a few seconds, like someone in normal health would get from running around the block. It’s only with the help of supplemental oxygen that I am able to do much of anything at all. Like anyone else with a serious illness, I go through phases in my struggle to deal with it. Sometimes I’m grateful that medical science allows me to live with a condition that would probably have killed me outright within a year or two had I been born a century ago. Other times I feel resentful to be chained to this fucking oxygen hose. But fortunately, the good days overwhelmingly outnumber the bad. I can get out and about OK if I wheel my O2 tank along with me, and I have decent mobility with my little blue Buzzaround scooter (in fact, it can be actually fun to ride).

But I have to confess I’m getting tired and frustrated with remaining in limbo; after two years of this, part of me wants to get on with the transplant surgery and get it over with. With any luck, I will be able to regain somewhat of a normal life again post-transplant. I’ve met other patients who, several years after their surgery, say they feel better than they’ve ever felt before, which makes me very hopeful. The idea of being able to do the simple things I love again — travel, walk on the beach, go dancing, ride a bike — fills me with optimism, so I think “all right, cut me open and let’s get this show on the road.”

Of course, once I start really thinking about it, how one in ten transplant patients don’t make it out of the O.R. alive, how the average post-transplant life expectancy is only about five years, it scares the crap out of me. Medical science makes amazing discoveries every day: could lung tissue someday be regenerated, or grown externally to preserve the DNA structure in such a way that the body’s immune system doesn’t try to expel it as a “foreign object”? (Rejection is the single-most common reason for organ transplant failure.) Who knows what miracle “cure” could come along in the next year or two that might even eliminate the need for the surgery? With that in mind, the longer I can postpone it the better.

So in the meantime I’ll continue to wait, follow my medication and pulmonary rehab regimen, and try to stay as healthy as I can. I’ll remember to keep a positive attitude, and do my best to enjoy life … three months at a time.

IPF Strikes Again

Wednesday, February 14th, 2007

Rep. Charlie Norwood (R-Ga.) died today at his home after a long battle with chronic lung disease. He was 65.

His congressional passion was health care. Taking on insurance companies, he spent much of his political career pressing for a “patients’ bill of rights” aimed at giving consumers better access to care. My kinda guy, even though I may not have agreed with his stand on some other issues.

Diagnosed with Idiopathic Pulmonary Fibrosis in 1998, he underwent a lung transplant in 2004 but suffered recurring side effects due to the suppression of his immune system needed to prevent rejection of the organs. Eventually, cancer set in, which spread from his lungs to his liver. (Read full story here.)

I shudder whenever I read news like this; it’s a combination of rational fear, and irrational anger that despite advances in medical science over the years, this insipid disease continues to claim lives unchecked. While transplantation can indeed be lifesaving, it’s also an incredibly risky treatment of last resort. I have no doubt that in centuries to come, medical professionals will look back at the practice of hacking out and replacing major human organs as barbaric, much as Dr. ‘Bones’ McCoy scorned highly-invasive 20th-century medicine as “medievalism” in the Star Trek series. But at the moment, it’s the only option we have when other treatments fail.

This news also makes me more determined than ever to fight and survive my IPF. I’m participating in cutting-edge clinical trial research, and have been relatively stable for almost two years now, so I still have hope.

I will beat this thing!

News you can use

Tuesday, February 13th, 2007

Since I’ve been sidelined by my lung illness, I’ve found that I get tired easily and as a result, often take naps for a couple of hours in the afternoon. Raised under a uniquely American work ethic that considers such behavior “lazy” and unproductive, I’ve always felt a bit guilty about this.

But today has brought sweet vindication in the form of news from a team of American and Greek researchers who have found scientific proof that naps are good for you. According to their study, those who take at least three daytime naps a week lasting 30 minutes or longer cut their risk of dying from a heart attack by 37 percent.

“If you can take a midday nap, do so,” advised co-author Dimitrios Trichopoulos, an epidemiologist at the Harvard School of Public Health in Boston. Trichopoulos and his colleagues followed almost 24,000 originally healthy men and women in Greece for more than six years. Of these, 792 died, 133 of them from heart disease. Slightly more than half the study group took regular midday naps, a popular activity in Mediterranean societies. The nappers’ death rate was only about two-thirds the rate among Greeks who stayed awake all day, the study found.

Regular siestas apparently lower stress, which is frequently associated with heart disease. This report in the medical journal Archives of Internal Medicine is the latest in a number of studies that have found links between heart troubles and physical or emotional stress. “There is considerable evidence that both acute and chronic stress are related to heart disease,” Trichopoulos said. “An afternoon siesta in a healthy individual may act as a stress-releasing process [and] reduce coronary mortality.” Napping provides the body with an opportunity to recover from stress, and can result in measurable improvement in a person’s blood pressure, heart rate, hormones, sugar and cholesterol levels.

Napping is a much more commonly accepted practice in many countries outside the USA; here, boiler-room pressure to stay competitive tends to cause most bosses to frown upon daytime sleepers. However, some forward-thinking employers have realized the value of helping their workers avoid stress and stay healthy, and have set up “nap rooms” for employees use during the day. This progressive attitude can make a huge difference in the therapeutic value of an afternoon siesta.

“Here, if a person naps, people say, ‘You lazy slob’,” said Peter Vitaliano, a professor of psychiatry and psychology at the University of Washington in Seattle. “In the Mediterranean countries — like Greece, Italy and Spain — they say, ‘Did you have a good nap?’ So there’s going to be a difference how much naps help.”

I’m glad to know that I’m on the cutting edge of health, and I encourage my readers to do the same whenever they get the chance. Maybe right now. If you’re reading this blog at work, you can’t be doing anything that important, so why not grab a few zz’s? If your boss complains about you sleeping at your desk or office, just show them this prescription from Dr. Toast for reducing stress and avoiding heart disease, and point out how taking a nap could save your life. I’m sure they’ll be thrilled.

Not so good news

Thursday, January 4th, 2007

I’ve held off writing about this for the last couple of weeks, mainly because I wasn’t sure exactly what I felt or how to express it. It’s also some fairly serious stuff, and I didn’t feel like throwing a wet blanket on anyone’s holiday spirit. But now that we’re into the new year, it’s time for me to face the results of my doctor visit just before Christmas, and the first step in dealing with it is to get it out in the open.

In a nutshell, my lung functions have gotten worse since I was last tested in June, and my doctor is concerned that I could be on the verge of a decline that will necessitate my transplant surgery sooner rather than later. To understand this a little better, take a look at this chart which plots lung capacity (technically referred to as “FVC” or “forced vital capacity”, measured by a standard pulmonary function test) over time: First of all, note the dotted diagonal line. This is the “typical” rate at which a patient diagnosed with Idiopathic Pulmonary Fibrosis might be expected to lose lung capacity. An often-quoted statistic is that someone with IPF will, on average, die within two to five years following diagnosis if they don’t receive a lung transplant. Of course, in reality no one tracks this line exactly. Some people may last for 8-10 years, others much less. Much depends on age and other contributing health factors. Actual results over time will bounce around and hardly ever be a nice, straight line as shown on the graph. Still, this can be considered an average for statistical purposes.

My actual, measured results are the solid line, beginning when I first started noticing shortness of breath in mid-2001 and had my first PFT. At that time they could find nothing wrong; my capacity of 78% was considered “within normal limits” and it was suggested that I lose weight and exercise to improve my physical condition. A year later, when I continued to be breathless despite doing this, I was tested again and found to have a 55% capacity. More testing and a lung biopsy followed, and I was diagnosed with IPF at the end of 2002.

Things get somewhat interesting after this. After being prescribed Prednisone (a corticosteroid), my rate of decline slowed but still continued a steady drop. Based on these tests, my remaining life expectancy was estimated at less than two years and I began the lengthy qualification process for a lung transplant at Houston’s Methodist Hospital. However, at around the same time I was also approved to participate in a clinical trial, and shortly afterwards began taking an experimental medication called Pirfenidone. Note how this is at the point where my numbers bottom out, and following this begin to show improvement. In the last year and a half since, this improvement has been nothing short of dramatic, and when I was tested last June just prior to leaving on the big 2006 Toasted Tour Road Trip, my PFT numbers were higher than they had been since 2002. This is virtually unheard of in IPF patients. Test results can fluctuate, bouncing up and down by small amounts depending on a host of variable factors, but a sustained upward trend like I had been showing since starting the new med has been cause for celebration and optimism in 2006. I began to believe that maybe, just maybe, the drug was working and that I might not need the lung transplant after all. Could I dare to hope that I would be the first patient in history to be “cured” of IPF?

However, my doctor is one of the best transplant pulmonologists in the nation; as a result of having seen hundreds of IPF patients over the years, he knows the clinical history of this disease all too well and is naturally skeptical of any miracles. While reasoned optimism is not a bad thing, he has wisely cautioned me not to set my hopes too high, lest I fall into depression from “burst bubble syndrome” if my rally doesn’t last. And sure enough, you will note that this last series of tests has put me on the other side of the bump. The dashed blue “trend” line is a mathematical weighted-average of my PFT scores which shows, overall, that I am still losing ground over time — although at not nearly as steep a rate as our hypothetical “typical” patient.

What mainly concerns my doctor right now is the possibility that I could be on the verge of dropping into a sudden decline. He has seen IPF patients go from relatively well-off to death in a matter of a few months. This is frequently the result of something like the flu, which can quickly turn into pneumonia in someone with a compromised respiratory system, but it can also happen without precipitation; that’s just the nature of this fucking disease. As I said at the outset, the numbers don’t necessarily follow that predictable linear dotted line — all that’s known for sure is that they’ll wind up at the bottom of the chart eventually.

The most important thing we need to ask now is where the next data point on this chart will be, so I’m supposed to go back in another six weeks to be tested again. This most recent decline could be an anomaly; I could remain stable, or even continue to improve, in which case we’ll continue our wait-and-see approach. However, if I appear to be continuing down the slope, I’ve been advised to prepare myself mentally and emotionally for the transplant surgery to take place within a relatively short period of time, perhaps weeks. This has been a bit hard for me to grasp, as I’m still encouraged by my apparent favorable response to the pirfenidone, and not feeling all that bad physically as long as I don’t exert too much and get myself out of breath. However, I do understand that the goal of transplantation is to find the perfect window of opportunity where the person is, obviously, sick enough to need it to survive long-term, yet healthy enough to withstand the extreme stress of the surgery and recovery. They want me to have every possible advantage going in to this, and my chances for survival will be better if they err on the healthier side of that window as opposed to waiting until I’m in poor shape.

So that’s where we stand — waiting for the next dot on the chart. I’m trying to feel upbeat about this, and intend to work at getting as healthy as possible in the weeks ahead. I’m going to go on a diet and try to lose even more weight, and step up my pulmonary rehabilitation program to develop greater exercise tolerance. I won’t give up fighting!! Sorry for this depressing post, but I want to blog about everything that goes on in my world, and this is certainly a large part of it. Thanks for reading, and for your support, y’all. It means a lot to me.

Over the river and through the woods…

Tuesday, December 19th, 2006

…we’re off on a Houston drive!
For my hospital tests
I’m feeling quite stressed
I hope I get home ali…ive!

Ho, ho, ho! Time to get out the sleigh bells and put a wreath on the front grill of the van, as we’re about to hit the road for the holidays. In addition to visiting the relatives, it’s also time for me to go back to Methodist Hospital for another pre-transplant evaluation of my lung functions for my IPF, so I’ll be spending the better part of Wednesday and Thursday being poked, prodded, stuffed into a little airtight cabinet, and blowing into tubes. What jolly fun! After quite a few of these pulmonary function tests, I think I’ve about got the routine down by now.

The good news is that I seem to still be doing fairly well considering that two years ago, I was told that I had perhaps 18 months left to live … and I honestly feel better now than I did then. I can’t help but think that my experimental pirfenidone treatment has had something to do with that (and of course, all that clean living – hah!) so I’m optimistic that the test results this week will show that I’ve remained relatively stable in the six months since my last exam. I have noticed that I’m coughing more and seem to be getting tired more easily than I did over the summer during my whirlwind New England road trip, but we’ll see what my pulmonologist has to say. Most likely, I expect he will tell me to come back in another three months (or six months if I’m lucky) and we’ll do this drill all over again. It’s a bit frustrating to be stuck in limbo like this: dependent on supplemental oxygen and not well enough to be able to carry on “normal” activities, yet not sick enough to need immediate transplant surgery. But hey, I am not complaining! On the contrary, I consider it a major blessing that I’m doing as well as I am, and have learned to cope with the limitations imposed by my condition. This glass is definitely half-full. (Which, being an engineer, reminds me of the old joke that an optimist sees a glass as half full, a pessimist sees it as half empty, and an engineer sees a glass that’s twice as big as it needs to be.)

But once this business is out of the way Thursday afternoon, it’s on to more pleasant things including some shopping and dinner at a nice restaurant in Houston, and visits with friends and family there. We’ll be back on Christmas eve to spend a quiet holiday at home, and may find a few minutes for an occasional blog post here and there. I’m sure most of you will be busy with your own family gatherings, but please stop by and say “hi” if you get the chance. I know one blogger friend in particular will be quite busy with having a baby over the holiday; please visit April’s blog and wish her congratulations once her little bundle of holiday joy arrives (any day now). Talk about a great Christmas present!

I’ll leave you for now with this sacred and uplifting tune that will hopefully enhance your enjoyment of the season; I think it captures the true spirit of the holiday. Just click on the little “play” button below. If I’m not able to post again before the weekend, let me take this opportunity to say…

Merry Christmas to All
And To All a Good Night!

What disease cannot do

Saturday, November 18th, 2006

A new blogger friend has recently announced that a close member of her family has been diagnosed with the same illness that I have, Idiopathic Pulmonary Fibrosis. They are going through a period of shock and adjustment that I know all too well from my own diagnosis nearly three years ago. So it was perhaps more than mere coincidence that today as I was leafing through various Christmas catalogs, I came across a framed print with an eloquent and inspirational message that I’d like to share:

What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendships.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the Spirit.

Medical research shows without any doubt that a healthy and positive mental outlook can translate into actual physical well-being, and I think these words are applicable to those with any serious illness.

New transplant rules saving lives

Wednesday, September 27th, 2006

Introduction: In May of this year, I was accepted as a candidate for lung transplantation due to my diagnosis of Idiopathic Pulmonary Fibrosis. However, at this moment my current wait-list status is designated as “inactive” due to the fact that — thankfully — I am not so sick that a transplant is immediately needed to save my life. That may indeed become the case at some point in the future when (if?) my condition worsens, but for now I will continue to remain on standby. The good news is that in this event, I am likely to receive a new lung relatively quickly, thanks to recent changes in the system under which donor organs are allocated once they become available. I wrote about this back in March when I learned of the new UNOS procedures, but over the weekend the following article appeared in the New York Times which provides a much better look at how the system now works and how it benefits all transplant patients, eventually including myself.

–0–

by Denise Grady

NEW YORK – A quiet revolution in the world of lung transplants is saving the lives of people who, just two years ago, would have died on the waiting list. In the past 16 months, waits have shortened, lists have shrunk, and the number of lung transplants has gone up. Further improvements are expected this year.

The changes have all but erased the need for transplants from live donors — desperate, last-ditch operations requiring two donors per patient, usually relatives and friends who risk major surgery in hopes of rescuing a loved one whose time is running out.

“It’s almost as if it’s a whole new day for lung transplantation,” said Dr. Cynthia Herrington, a surgeon at the University of Minnesota Medical Center, Fairview, in Minneapolis. “It’s amazing.”

Nationwide, it is too soon to tell what the impact of the transplant changes will be. “Are we actually improving overall survival?” asked Dr. Selim Arcasoy, the medical program director for lung transplantation at New York-Presbyterian Hospital/Columbia University. “Or are we transplanting sicker people who don’t last as long?”

Transplants are given to people whose lungs fail because of emphysema, cystic fibrosis or other, less common diseases. Since demand exceeds supply, patients must join regional waiting lists that are part of a national network.

Recent changes have revitalized lung transplantation. Starting in May 2005, new rules nationwide put patients who needed transplants most at the top of the list — people who would soon die without a transplant, but who had a good chance of surviving after one. Previously, lungs went to whoever had been waiting longest, even if another patient needed them more. The waiting time was often two years or more, so there was little hope for people with lung diseases that came on suddenly or progressed rapidly.

Another major change is that more lungs from cadavers have become available, for two reasons: more people are becoming organ donors, and doctors have figured out ways to salvage lungs that previously would have been considered unusable. The new methods use drugs, respirator settings and other techniques to prevent damage to the lungs and keep their tiny air sacs open in brain-dead patients.

In the past, lungs could be retrieved from only about 15 percent of organ donors, but at some centers the rates have risen to 40 percent. Dr. Herrington said that in Minnesota, the number of lungs retrieved went to 97 from 25 in a single year. “Good organs 5 or 10 years ago were probably being buried” because doctors did not know how to save them, said Dr. Kenneth R. McCurry, director of heart and lung transplantation at the University of Pittsburgh. The number of lung transplants has risen to 1,405 in 2005, 248 more than the year before. Fewer people are dying on the waiting list: 360 in 2005, down from 488 in 2004.

The new rules made the difference between life and death for Hannah Olson, 20, a college student from Waukon, Iowa, with cystic fibrosis, a genetic disease that affects the lungs and digestive system. Ms. Olson was well enough to start college in 2004, but by January 2006, she was on the transplant list. Her status, though, was not yet listed as “active,” because her condition seemed stable and she needed to gain weight. But in mid-February her lungs gave out. Unable to breathe, Ms. Olson was put on a respirator, and her waiting list status changed to active. Without a transplant, she probably would have died within days. Her desperate condition translated into a numerical score that shot her to the top of the list. Twelve hours later, lungs became available, and she received her transplant at the Fairview center in Minneapolis, one day after being put on the active list.

“I’d probably be gone if the list was the way it was before,” Ms. Olson said. Her surgeon, Dr. Herrington, agreed, saying, “In the old system she would not have even been listed, because she would have had years to wait.” Ms. Olson is back in college now, hoping to earn a degree in social work. “I’d kind of like to work with transplant patients,” she said.

Lungs have always been “the bad stepchild” of organ transplants — harder to get, harder to transplant, more prone to rejection and complications than other organs, said Dr. Scott Palmer, the medical director of Duke University’s lung transplant program. Lung transplants were not consistently successful until the mid-1980’s, lagging far behind those of kidneys, livers and hearts. From the start, lungs have been offered first to whoever had spent the most time on the waiting list, in the donor’s geographic region.

Changes in the system came about partly because of a 1998 federal regulation requiring that all organ transplants go to patients with the greatest medical need. The intention was to even out waiting times around the country and decrease deaths on the waiting list. Changes have been gradual.

Livers and hearts are already allocated according to patients’ needs. Kidneys still depend on waiting time, but the rules may change to factor in patients’ odds for survival, according to Annie Moore, a spokeswoman for the United Network for Organ Sharing, or UNOS, the nonprofit organization that manages the transplant network in the United States.

For lungs, figuring out how to measure medical need and rank patients with different diseases took time. “Our concern was that if we used just severity of illness, we might waste a lot of lungs on patients who were so sick they were unlikely to survive anyway,” said Dr. Thomas Egan, a cardiothoracic surgeon at the University of North Carolina, Chapel Hill, who led a UNOS panel that spent several years developing new rules for lung allocation. The panel studied medical records to figure out which patients were most or least likely to survive after a transplant, and worked that into the scoring system. As a result, lungs are now the only organs with transplant rules that consider the recipient’s survival odds.

Almost immediately, the new system cut the waiting list in half. Because waiting time no longer mattered, people who had been listed early in their illness just to hold a place in line dropped in rank or were deleted (unless they needed a transplant right away) but could rejoin the list later if they became sicker. Overnight, some patients who had waited for years to reach the top of the list suddenly found themselves at the bottom, or even crossed off. Nobody was grandfathered in.

“We tried our best to educate and communicate, but many felt they had been cheated,” Dr. McCurry said. But at his center in Pittsburgh there were no deaths among those who lost their places in line, he said, adding that many still received transplants. Those who remained on the list needed transplants soon. As a result, it became much easier to find recipients quickly, which was a huge improvement, because once an organ donor is brain dead, organs start to deteriorate. The lungs are especially fragile.

In the past, transplant coordinators might have spent hours calling hospitals, only to hear again and again that the patient at the top of the lung list was not sick enough for a transplant. Meanwhile the clock would be ticking; patients would have been found who needed the heart, kidneys and liver; and surgeons would be standing by, ready to remove them. Doctors say some lungs were probably wasted because recipients simply could not be found fast enough. “Placement is easier now,” Dr. Egan said. “It takes four or five calls. It used to be 16.”

The new system has also changed the types of patients who receive the most transplants. Before, a majority had emphysema, a lung disease nearly always brought on by smoking. They received transplants because the disease moves slowly and they could wait, outlasting patients — often younger ones — with other lung diseases.

“People with pulmonary fibrosis or pulmonary hypertension can be diagnosed and go downhill very, very rapidly,” said Dr. G. Alexander Patterson, a surgeon at Washington University in St. Louis, which has one of the country’s largest lung transplant programs, with about 55 to 60 adult patients and 25 to 30 children a year. Pulmonary fibrosis causes extensive lung scarring, and its cause is often unknown. Patients can die within a year of the diagnosis. But patients with emphysema can often live for a long time. As a result, Dr. Patterson said, many people thought the old system gave an unfair advantage to emphysema patients. On the waiting list, 5 to 10 percent with emphysema died each year, compared with 30 to 40 percent among those with cystic fibrosis or pulmonary fibrosis.

“It was an ethical dilemma,” Dr. Patterson said, adding that some doctors were troubled to see so many transplants go to people with emphysema, which is caused by smoking, whereas “others have disease they didn’t produce.” Now, at most centers, more patients with pulmonary fibrosis are getting transplants.

Dr. Jonathan B. Orens, medical director of the lung transplant program at Johns Hopkins, said that in the past year, more than half the 28 recipients there were people who, under the old system, would have died on the waiting list. Dr. Orens said he and his colleagues had just performed a preliminary analysis of the nationwide data on the first patients treated under the new system, and found that so far, one-year survival rates appeared to have dropped, to about 70 percent, from about 80 percent over all. “At first blush, that may seem like a bad thing,” he said. But, he said, it may mean that the new system is doing exactly what was intended: giving transplants to the patients who need them most, rather than to people who do not need them yet.

Past survival rates might have been higher because the recipients were healthier. But a transplant might not have prolonged those patients’ lives because they might have survived just as long without it. Sicker patients may not live as long as others after a transplant but may still live longer than they would have without it.

“You get only a limited longevity from a lung transplant,” Dr. Orens said. “In the old system, the average survival was a little under five years.”

Earlier studies suggested that although people with emphysema might have felt better after transplants, they did not necessarily gain time, whereas those with pulmonary fibrosis or cystic fibrosis did. That finding means that the emphysema patients may have been getting transplants too soon, Dr. Orens said.“This is important,” he said. “If you transplant patients prematurely, you may shorten their lives.”

Slightly lower survival rates under the new system, he said, “may be the best we can do with lung transplants when patients are this sick.” The rates may still represent a net benefit, he said, “compared to shortening the lives of patients who did not quite need the transplant.”

As more data comes in, the rules may need to be adjusted, Dr. Orens said. “We’re trying to capture just the right patients at just the right time.”

©2006 The New York Times

Houston, how I love/hate thee

Saturday, June 10th, 2006

I’ve just returned from yet another trip down the road to the 4th largest city in the USA: Houston, Texas. As a former 10-year resident of the Bayou City, I’ve always had a very bipolar relationship with this town, and each time I go back there again I have these same sort of feelings. In a nutshell:

Top Three Things I Love About Houston

1. World-class medical facilities
2. Great restaurants and shopping
3. Architectural and cultural highlights

Top Three Things I Hate About Houston

1. Traffic
2. Traffic!
3. TRAFFIC!! Grrrrr!!

“Rush hour” is a joke; congestion on the freeways and arterial roads lasts from about 6 AM until 7 PM, with perhaps a brief letup around 10-11 AM and 2-3 PM. This is compounded by the near-constant state of construction on many of the highways, and frequent accidents that block traffic. I suppose Houston drivers are no worse than those in any other big city (Boston and New York come to mind as metro areas with some of the most horrendous traffic conditions) but courtesy and common sense are thrown out the window here as often as used cigarette butts. This becomes especially apparent when it’s necessary to merge lanes. Houston drivers absolutely will not budge when merging, but rather develop a steely straight-ahead stare as they hug the bumper of the car in front of them which seems to say “I do not see you attempting to merge from your lane which is ending to mine, and if I refuse to acknowledge your existence, then I do not have to let you in.” Even worse, possession of concealed firearms is legal in Texas, so there is always the not-so-remote possibility that road rage can escalate to deadly violence. Flip off another driver at the risk of your life.

There are other disadvantages besides traffic snarls: crowded conditions, expensive housing, pollution, and crime. Of late, Houston has been struggling to cope with the influx of refugees from Hurricane Katrina. Many of them, having nothing to return to, have simply stayed on — causing a discernable crunch in apartment and job availability. Also, a number of teen gangs from New Orleans have re-formed here, resulting in turf battles with already-established local gangs and a spike in drug-related crime.

Even with all these negatives, however, Houston is still a vibrant and exciting place. I remember quite clearly the feeling of energy I had when I first came to town years ago — a crackling electric thrill from the crowds, bright lights, jumping night life scene, and the multitude of attractions and opportunities that can only be found in a city of this size. Even to this day, the sight of the Houston skyline still fascinates me.

Of course, the main reason I make the 150-mile drive to “Big H” on a regular basis is for the medical facilities, and the Texas Medical Center is without equal. M.D. Anderson Cancer Center is renowned the world over, and surgeons like Dr.’s Denton Cooley and Michael DeBakey pioneered heart transplantation here. Other institutions such as Texas Children’s Hospital, Baylor College of Medicine, St.Luke’s, and Methodist Hospital rank among the best in the nation. My transplant pulmonologist at Methodist is world-renowned, and I will feel very comfortable putting my life into his hands when the time comes. But, the good news is that time will not come for at least another six months! More tests and a visit with him last week confirmed that my lung function has continued to improve, and I have added nearly one liter of volume to my lung capacity since last December. Even my doctor, a practical realist who has cautioned me during previous visits not to put too much stock into the numbers as they tend to fluctuate, had to admit last week that this latest increase is, in his words, “significant.” In fact, he thinks I’m doing well enough that he said he does not need to see me again for another six months, instead of the usual three month follow-up schedule I have been on since last September. Woo-hoo!

There are other reasons why Houston is dear to me, but I’ll save those for another post. For now, my good medical news is reason enough!

Confirmed: I am a freak of nature

Thursday, May 25th, 2006

I am a medical mystery, wrapped in an enigma, surrounded by a conundrum; I know this because my pulmonologist has told me so. Somewhere in Houston, perhaps at this very moment, various medical professionals are scratching their heads, consulting research journals and discussing with their peers the unexpected good news that I have continued to show a very slight improvement. My pulmonary function test results from this week were up about 15% from the last similar measurements observed in December 2005.

While this is great news for me, and I should probably just accept it at that and let it go, the greater impact of this development is unclear. It’s very unusual for anyone with Idiopathic Pulmonary Fibrosis (IPF) to show any significant improvement. There is little disagreement in the medical community that pulmonary fibrosis is a terminal illness, a view supported by the clinical histories of thousands of IPF patients over the last twenty years or so. Data shows that the overwhelming majority of those diagnosed with IPF who do not receive lung transplantation will die within two to five years. While pulmonary function test results may bounce around slightly from month to month, the slow and continuous deterioration in lung capacity over the long term eventually results in respiratory or cardiac failure due to the inability of the lungs to keep the blood sufficiently saturated with oxygen. For someone to show a continuous improvement (albeit a very small one), as these latest results indicate, is virtually unheard of.

There are several possible reasons for this. The most obvious theory is medication: I am enrolled in a clinical trial of an experimental drug called pirfenidone, and if it is in fact working, it could explain the improvement. This was the reason for my visit this week to “Dr. M.”, the pulmonologist who is supervising my participation in this program, and the one who conducted these tests. However, there is no way to verify this theory at present. Although initial results have been encouraging (including a similar 2005 study in Japan), this trial in which I am enrolled is ongoing and results won’t be analyzed and published for a couple of years yet.

Another hypothesis is that I was misdiagnosed in the first place, and I could have something other than IPF. There are a number of other conditions that can result in scarring of the lungs, and while most of the obvious ones were ruled out in my case, something else as yet undiscovered could be responsible. To investigate this more thoroughly, Dr. M. and I have made the decision to biopsy a suspicious section of my left lung in about a month or two, so I will have yet another exciting hospital visit to look forward to.

The next immediate step is that I’ll meet with my lung transplant doctor (“Dr. S.”) on June 8th, and he will make the decision then whether to keep me on standby for another three months, or change my recipient candidate status to “active” and proceed with the transplant surgery as soon as a suitable donor lung becomes available. Given these most recent results obtained by Dr. M., however, it seems much more likely that we will continue with the wait-and-see approach for at least a little while longer. Fortunately, even though Dr. M. and Dr. S. work for different competing hospitals under separate administrative systems, they are consulting and cooperating with each other, so I’m getting the best of both worlds.

Finally, another possible explanation that cannot be ignored is the chance that I may have been blessed by a small miracle. For this case, I have a modest band of supporters to thank from the bottom of my heart, including the readers of this blog. Please know how much I appreciate your prayers and well-wishes, you guys; never underestimate the healing power of love.

I was hoping not to read this

Friday, May 12th, 2006

Cancerbaby’s struggle is over.

The meaning of life

Monday, May 8th, 2006

First off let me apologize for the pomposity of this post title: “The meaning of life”, indeed. Hah! Like I could possibly figure out something philosophers, scholars, stargazers, and ordinary folk have pondered for millenia. It’s all relative anyway: what’s meaningful to one person may be absurd to someone else, depending on the culture of their homeland, their family, religion, or personal values, to name just a few factors.

So now that I have prefaced this with the realization that I probably have less than half a clue as to what I’m talking about, let me tell you what I think “life” means to me: being in the right place, at the right time.

We don’t live on this planet in a vacuum; there are millions of other souls on the same journey with us. And what makes the experience meaningful, in my opinion, are the relationships we form with others, how we affect them, and vice-versa. I believe that at some point in our lives — at least once, and likely more often — we will be in the right place at the right time for someone else, and that will give our own lives meaning.

Let me give you an example from a true story I read recently involving a man driving over a lonely mountain pass in southwestern Colorado. It was late at night, weather conditions were poor, and there was virtually no one else on the road. As he rounded a corner, for an instant he glimpsed a flash of something out of the corner of his eye that did not seem right, and it bothered him enough to stop and go back to see what it was. It turned out to be another vehicle that had slid off the road and down an embankment into some large rocks and trees. The man stopped and ran to the car to find a severely injured young woman trapped inside the wreckage. She was only partly conscious, and told the man she had been there for at least an hour or more. Only one other car had passed by in that time, and they didn’t stop because they simply did not see her vehicle off the road in the darkness.

There was not much the man could do for her; he had no medical training, and his cell phone did not work out in the wilderness for many miles in all directions. He offered to go get help, but they both knew it could be hours before any emergency personnel could get there; with the extent of her injuries, she would not last that long. So instead, she asked him to stay with her so she would not be alone. She told him of her family; she was Native American, and had been on her way to see her parents in New Mexico. She asked the man if he would deliver a message to her mother and father: she wanted them to know that she loved them, and that she was at peace and not afraid to die. She also gave the man other specific messages to pass on to her family. Not long after this, she succumbed to her injuries.

Even though it was some 400 miles out of his way, in the opposite direction from which he had been travelling, the man didn’t hesitate for a moment. He drove straight to her parent’s house and delivered the messages the dying woman had given him. Despite their grief, her parents took great comfort in knowing their daughter’s final thoughts, and were very grateful to the man for what he had done for a total stranger.

In short, he was at the right place at the right time — and I think this is what it’s all about. At some point in our lives, something similar will happen to us all. It may not be nearly as dramatic as the above story, but it will be life-altering in some way for you or someone else. It may still yet await you, or it may have already happened. By some extraordinary coincidence, perhaps you have met the person who has changed your life, and it has resulted in children who would not have existed had it not been for whatever bizarre quirk of fate or series of events put this person in your path. Indeed, it may happen a hundred times; someone will need you, and you will be there for them, or some circumstance will change just by the fact of you being there that will profoundly affect another’s life. We often take this seeming randomness for granted, but I think it goes to the fundamental nature of what makes us sentient beings, and hints at why we were put on this earth.

If that’s not “the meaning of life”, I think it’s at least a clue.

Who will be in the right place at the right time for you?

Life-changing device

Tuesday, April 11th, 2006

In the photo to the right, I’m holding a pager … your ordinary, garden-variety beeper. They’re not quite so common these days, now that everyone has a cell phone glued to their hip, but if you’ve ever had a job that required you wear a beeper and be “on call”, you understand the strange combination of respect and loathing you felt for this device. The main reason to hate it was for its intrusiveness. The damn thing could go off at any moment, any time of the day or night, and it didn’t matter where you were or what you were doing when it did. You could be eating dinner, or watching a movie, or having sex — it didn’t care. You’d have to respond to it. You might feel like throwing it against the wall instead, but if you failed to quickly answer the page, sooner or later you’d have to explain why to your boss. Do that once too often and you might be out of a job.

It seemed that most of the time, it would go off in the middle of the night when you were sound asleep, interrupting the most wonderful dream with the reality that someone, somewhere, needed to talk to you about something important right now. Sometimes you’d be lucky; whatever problem they needed to contact you about could be solved quickly and simply over the phone, and you could then relax and go back to sleep. Other times, you’d have to get dressed and go in to work; something was seriously amiss that only you could fix. And of course, that was the flip side of it — the reason you respected the beeper as well as hated it’s goddamn insensitive electronic guts.

It meant that you were important.

Whatever particular knowledge or ability you possessed was so highly regarded by your employer, they gave you this device so that you and your skills could be available at a moment’s notice. (Hopefully, you were paid handsomely for this as well.) Minor consolation that this may be, the point is that most people are at worst irritated and perhaps inconvenienced to have their beeper go off.

When this particular beeper that I am holding goes off, it will mean something entirely different.

It will mean that someone, somewhere, has just died — and a doctor at the scene has determined that this person’s lung(s) are available for transplantation.

It will mean that the hospital’s computer has generated a “match run” of the most suitable recipients for this organ, and my name is at the top of this list.

It will mean that no matter where I am or what time of day it is, I will have to drop everything, grab a suitcase that is packed, ready and waiting by the door, jump into the car and get to the hospital (150 miles away) in less than three hours, and undergo probably the most complicated and extensive surgery known to modern medical science.

It will mean that, if for whatever reason things don’t go well in the operating room, that my remaining life expectancy from the moment the beeper goes off could be measured in hours. There is about a ten percent chance of this, which is not insignificant odds.

Even under the best of circumstances, it will mean that when I regain consciousness after the surgery, intubated in critical care, my arms will be strapped down so that I’m unable to respond to the instinctual urge I am told that I will have to rip the tubes that will be keeping me alive out of my throat.

However, this moment will also mark the beginning of my recovery. After roughly two to three weeks in the hospital, I will have gained enough strength to be released. Rejection of the transplanted organ will be the main concern, and I will have to live within 30 minutes of the hospital for at least the next three months. For the first 30 days after my release, someone will have to be with me every moment around the clock, in case something goes wrong. I will have to be on a regimen of anti-rejection medications for the rest of my life; my body will always consider my new lungs to be “foreign objects” and fight to expel them, so my immune system must be suppressed to prevent this from happening. This will open up an entirely new set of problems for me, as I will be much more susceptible to other opportunistic infections that “normal” people shrug off with perhaps a slight temperature and a couple of aspirin. The flu could literally kill me.

But it will also mean that after I am fully recovered from the surgery, perhaps six months later, if everything has gone according to plan, I will be able to breathe normally, without supplemental oxygen, for the first time in years. Getting up and walking to the bathroom will not make me out of breath. My world will no longer be limited to the 50-foot radius of my oxygen hose. I can ride a bike again. I can walk along the beach, or down the railroad tracks like I used to do when I was a kid. I won’t have to park in a “handicapped” space any more.

In short, I will get a second chance at life.

How long this will last is anyone’s guess. Lung transplantation has the poorest post-surgical survival rate of any major procedure, decreasing roughly ten percent each year; even heart transplant patients fare better. If I am still alive five years after the beeper goes off I will be considered “average”; I’ll get perhaps seven or eight years if I do well, and ten or more if I am extremely fortunate. But those are way better odds than I have right now.

That is what this beeper represents to me. It’s amazing to realize what power this little hunk of plastic and electronic parts has over my future. It scares the shit out of me and fills me with hope, all at the same time.

I’ve been approved! (gulp)

Wednesday, March 15th, 2006

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

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

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

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

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

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

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

IPF strikes again

Friday, February 24th, 2006

Conservationist and “Jaws” author Peter Benchley has died at age 65 of pulmonary fibrosis. Article here. It always makes me uncomfortable and a bit nervous to know when this fucking disease has claimed another person, but at the same time I get angry and determined. If anyone is gonna beat this shit, it’s gonna be me.