Archive for the 'medical' Category

This is the best news, ever

Wednesday, February 22nd, 2006

I’ve had chocolate on the brain a lot lately.

Perhaps it is due to this month’s National Chocolate Holiday known as Valentine’s Day, or fellow blogger and chocoholic “Moose In the Kitchen’s” recent ramblings on the subject. Most likely, however, it has more to do with my present dietary restrictions. When I was first being evaluated for a lung transplant last year, my doctors told me the only hurdle I faced was that I was too damn fat had a body-mass ratio that was slightly more than what was considered optimal for the surgery. They wanted me to shed approximately 50 pounds, and I was told that to do this I must go on a diet containing only essential nutrients, with no unnecessary food items.

I was fine with this concept (and have indeed dropped about 35 pounds since then) until I learned that my doctors considered chocolate to be one of these “unnecessary food items”. I then became shocked and horrified.

As a result of being forced to give up many of my favorite high-caloric little treats that helped to make an otherwise mundane existence seem worthwhile (including not only chocolate, but cookies, donuts, gooey cinnamon rolls, and a host of other tasty snacks as well), I’ve gone through a process resembling the stages of grief: first denial, then shock, anger, and finally, acceptance. While it seemed a small price to pay for a second chance at life, I nevertheless still longed for that sweet chocolaty fix. Which is why I nearly cried tears of joy when I read this headline in the news recently:

Chocolate is good for you.

It turns out that The Mars Corporation plans to release a new line of products made with a dark chocolate called CocoaVia, which is high in flavanols — an antioxidant found in cocoa beans thought to have a blood-thinning effect similar to aspirin. The snacks also are enriched with vitamins and injected with plant sterols from soy, which may help lower cholesterol.

Of course, Mars also makes Snickers, Milky Way, and M&M’s, so you might suspect their information to be somewhat biased. But in digging further, I found even more to suggest that chocolate is good for you, including this 1999 report from the BBC on a study by Holland’s National Institute of Public Health and Environment, which revealed that moderate chocolate consumption offers health benefits because it contain catechins, believed to protect against heart disease and cancer. The medical site WebMD also reports that dark chocolate can lower blood pressure. Still another study showed consuming dark chocolate and cocoa improves the function of blood vessels. The American Hypertension Society found that “consumption of cocoa in healthy volunteers, aged 18 to 77, resulted in significantly improved vascular responsiveness”.

Need more evidence? How about a CNN report revealing that “chocolate contains even more treasured antioxidants than red wine, blueberries or black tea”. Even the prestigious American Dietary Association agrees that cocoa flavanoids found in chocolate “are associated with a decreased risk of cardiovascular disease”. Hoo-yah!

While chocolate was first made in this country in 1765, it originated with the Aztecs of ancient Mexico for whom it was, quite literally, the food of the gods. The Aztecs considered chocolate divine; the tree on which the beans grow served as a bridge between earth and heaven. Chocolate was an everyday drink, but the Aztecs also solemnized everything from marriages to human sacrifices by having the participants drink it.

The Aztecs got it right from the very beginning. A little chocolate (and an occasional glass of red wine) adds to the quality of life not only psychologically, but as has now been confirmed, medically as well.

If medical science next reveals that beer, pizza, Philly cheesesteaks, and jelly donuts are good for you as well, then all my prayers will have been answered and I can die in peace.

PF Awareness Stamp

Friday, November 18th, 2005

I won’t do this very often, but today I’d like to ask readers of this blog to do me a favor. It will take a few minutes of your time and cost you 37 cents.

Public awareness of my disease, Pulmonary Fibrosis, is very low. Most people have never heard of it, and have no idea how it impacts the daily lives of those who have it. As a result, the search for an effective treatment – or perhaps even a cure – suffers, as PF research receives far fewer donations than other more well-known illnesses.

To help combat this lack of recognition, the Pulmonary Fibrosis Foundation is proposing that the US Postal Service issue a commemorative stamp to help raise the profile of PF among the general public. Such a stamp would join others that have boosted awareness of cancer, diabetes, organ donation and hospice care, such as the breast cancer stamp shown on the right. The USPS Stamp Advisory Committee receives tens of thousands of requests for stamps each year, and only considers “events and themes of widespread national appeal and significance.” To demonstrate this widespread appeal, the PFF is asking it’s members, friends, and anyone else who is interested to write to the Committee and urge them to issue the stamp. A postage stamp is a little thing, but everyone uses and sees it. It may lead someone to wonder if their shortness of breath could be Pulmonary Fibrosis, and get them to a doctor for a check-up. Very early detection and treatment of the disease can vastly improve chances of a better life with it.

I would like to also join in the grass-roots effort by promoting this idea on my blog, and by asking you to participate. Below is the text of a letter which you can either customize to your liking or use as-is. Simply cut and paste it into your word processor, print it, sign it and mail to the address indicated. For more information, click here.

I thank you from the bottom of my heart.



Citizens Stamp Advisory Committee
United States Postal Service
475 L’Enfant Plaza S.W.
Washington, D.C. 20260

Dear Members of the Citizens Stamp Advisory Committee:

I am writing on behalf of the Pulmonary Fibrosis Foundation to ask you to consider issuing a postage stamp to raise awareness of this terrible disease, Pulmonary Fibrosis.

Pulmonary Fibrosis is not as well known to most people as many other diseases, but those who have been impacted by it call it a “merciless killer.” The disease affects 200,000 Americans, of which 40,000 die each year. This is roughly the same number that die from breast cancer. It is an incurable lung disease in which the air sacs of the lungs are gradually replaced by scar tissue. As the disease progresses, the increase in scar tissue interferes with the ability of the lungs to transfer oxygen to the blood stream. Breathing becomes increasingly difficult, and most patients lose their fight with this disease in two to five years.

The Pulmonary Fibrosis Foundation was established in 2000 to help confront the many problems faced by those diagnosed with the disease. Its mission is:

1) To increase awareness of pulmonary fibrosis in both the medical community and the general public. This is important since early diagnosis and treatment may halt the disease’s progression and increase the longevity of the patient. To add to the problem, the condition is often misdiagnosed as asthma, emphysema or one of the many forms of pneumonia.

2) To increase funding for research that will find a cure for pulmonary fibrosis. To date, the medical community has not been able to determine what causes it or how to cure this disease.

3) To provide support, hope and inspiration to the community of Pulmonary Fibrosis patients.

A U.S. postage stamp would be a major catalyst for raising awareness and stimulating dialogue at a national level. I hope that you will find one for Pulmonary Fibrosis compelling and important. Thank you for your consideration.



Of life and death

Tuesday, November 1st, 2005

Oh we never know where life will take us
It’s only just a ride on the wheel
And we never know when death will shake us
And we wonder how it will feel…

-Linda Ronstadt, “Goodbye My Friend” written by Karla Bonoff

I’ve been thinking a lot about mortality lately, as I’ve done periodically since being diagnosed with my illness. It’s not something I dwell on, but it can be difficult to avoid considering the circumstances. I was reminded once again of the fragility of life by the tragic death last week of a young woman named Tanya, who was a friend of some folks I’ve met over the Internet. After driving nearly 800 miles from Colorado to North Dakota, she was within 20 miles of her destination when she was killed in a car accident. She was only 24 years old. Though I’ve never met her, I still sensed some very small portion of the pain and feeling of loss experienced by her family and friends. Any death is sad of course, but especially so when someone’s life is cut short so prematurely – when they have so much to live for, with seemingly so much time left to accomplish their goals and live their dreams. The truth, as Linda sings, is that we never truly know when our time is about to be up. I’m sure that none of the 3,000 or so people who began what seemed like any other normal workday at the World Trade Center on that fateful day in 2001 had any inkling that they were spending their last moments on earth.

Life’s so fragile and love’s so pure
We can’t hold on but we try
We watch how quickly it disappears
And we never know why

In my own case, the realization that I may only have a limited amount of time left is both a blessing and a curse. Most people find the topic unpleasant to think about and therefore best avoided; I’m no different. Even the very word, “death”, is hard to say, let alone acknowledge. But it’s a fact of life as much as life itself, and each of us has our own way of coping with it. What is unusual for me (and others with a terminal disease) is that we have not only the certainty that it’s going to happen, but also a rough idea of when – and more significantly, all this damn time to think about it beforehand. When one is taken suddenly, there is no chance for preparation, or reflection, or goodbye to loved ones. But with advance notice I have the opportunity to, as they say euphemistically, “get my affairs in order”. More importantly, I am able to reach out to those people who have been special to me for whatever reason, who have touched me somehow during my life. In quiet moments, I wonder about what is on the other side, if everything we’ve been conditioned to believe about the afterlife is true, or if there will be … just … nothing. That possibility is what I find the most unsettling of all.

When I was a kid growing up in Massachusetts, one of my favorite after-school pastimes was to walk along the railroad tracks on sunny fall afternoons. Not far out of town, the tracks rambled through an isolated wooded area, and a fairly short walk would take me (in my mind, at least) far away from civilization. I loved the solitude and feeling of being “out in the wild”. I also loved to watch the trains go by, fascinated by the majestic machinery and sense of wanderlust that fills the mind of a 12-year-old boy. The tracks took a long curve out of sight in the distance, but by placing my ear against the rail I could hear the trains approaching long before they came around the corner and into view. To me, this is what my mortality feels like now. With my ear to the track, I hear the faint metallic hum that signals its approach getting gradually louder. Even though it’s yet some distance off, I know without any doubt that it will be here before long.

The conclusion I draw from all this, which is obvious to most people, is that every day – every moment – is precious. Whether you see the end coming or are blindsided by it, savor your time on this planet for all it’s worth. Don’t wait until tomorrow to be a friend, help a stranger, tell someone you care, enjoy all of God’s blessings. The key to being happy is no secret: relax and make the best of what you’ve been given, instead of constantly wanting what you don’t have. It’s difficult sometimes, but no one ever claimed life was easy. Live the fullness of the moment, for you never know how long that moment will last.

So goodbye my friend
I know I’ll never see you again
But the love you gave me through all the years
Will take away these tears
I’m okay now
You can go now
Goodbye my friend

The elephant speaks again

Tuesday, October 25th, 2005

Foreword: In Part One, I introduced my lung condition (Idiopathic Pulmonary Fibrosis) and my preparation for a possible transplant. The adventure continues:

I’ve just seen my pulmonologist at the Methodist Hospital today, and received a bit of a shock: apparently, I’m too healthy to be considered for transplantation at this time! This means that I will not be placed on the official U.N.O.S. transplant list for at least another three months. Of course, I was elated to learn that the numbers objectively confirmed what I had been feeling subjectively (i.e., “better”) since last May, but at the same time I was somewhat disconcerted about the decision not to list me. After all, that’s been my goal since I started the evaluation process last February. Once we made the decision that a transplant was the way to go, I basically wanted to “get it over with” as soon as possible and try to move on with the next phase of my life – whatever that may be. Being in limbo like this is very frustrating. However, things became clearer after my doctor explained the new process by which patients are qualified as organ recipients. Up until earlier this year, donor lungs were allocated strictly on a first-come, first-served basis. The sole criteria was how long you had been on the list. Because of this, wait-list time nationally averaged two years or more until the transplant surgery took place. Unfortunately, many patients who desperately needed an organ died while waiting for one to become available. As a result, UNOS changed the organ allocation process to an intricate “scoring” system in which a numerical value is calculated based on a number of factors; esentially, it comes down to how sick one is. Time spent waiting still weighs into this score, but it’s no longer the sole measure. This has resulted in two significant improvements to the system; the most important is that people who are most in need of a transplant are the most likely to get one first. The second is that once your name is placed on the list, the waiting time is much shorter – on the order of three to four months. My doctor did reassure me that once my need becomes greater, I’ll be able to have the surgery in time. So, by any analysis, the news is good, not just for me, but for everyone who requires transplant surgery.

Figuring out exactly when to transplant a patient is a delicate balancing act. On the plus side, you have to be sick enough to need one in the first place. But on the minus side, you don’t want the person to be so compromised by their condition that they will have trouble surviving the surgery or the long recovery afterwards. The ultimate goal, then, is to be perfectly centered between needing the operation and being healthy enough to recover from it. In the last six months, I’ve apparently gone from just slightly negative of center to far enough positive that I’m not currently a candidate. This is very unusual for IPF patients, as nearly everyone continues a downward spiral once diagnosed.

So what, exactly, is going on with me? At least two factors might be contributing to my general improvement. The first and most obvious thing is that I have lost a considerable amount of weight recently as a result of dietary modification and a pulmonary rehabilitation program. Gradually, my exercise tolerance has increased; and while I’m still on continuous supplemental oxygen, I don’t seem to require as much to stay saturated as I did when I was heavier. This is all to be expected, and in fact my doctor thinks I could stand to lose another 15-20 pounds (groan!) which might help things even more.

But there’s an “X” factor that can’t be as easily explained or predicted: since last June I have been taking an experimental drug called Pirfenidone. This is one of a new class of drugs now undergoing clinical trials, and has the potential to be a real breakthrough in the treatment of IPF or other similar illnesses involving uncontrolled fibrosis. I was fortunate to be one of a limited number of people selected to participate in an “Early Access Program” to test the efficacy of this medication. Researchers, doctors, and most of all patients have been hoping and praying for years for the discovery of a “magic bullet” to provide a reprieve from the virtual death sentence imposed by a diagnosis of IPF. Perhaps this is it. But from what I have heard and read elsewhere, the results are far from conclusive – so only time will tell.

Enough for now. If you’ve read this so far, I thank you for your interest; I’ll continue later.

Hangin’ in “Big H”

Monday, October 24th, 2005

Something a little different for the post today, as I’m in somewhat of a subdued mood and not feeling up to my usual sarcastic self. :^) Monday night finds me in Houston, with plans for an early visit with my transplant team at Methodist Hospital tomorrow morning. They’re supposed to give me yet even more pulmonary function tests … groan. But I’m hoping the last hurdles to being placed on the organ recipient list will be removed after this. It was hard getting a hotel room due to the world series game being played here tomorrow. I guess I should be excited for the Astros (after all, I did live in Houston for nearly 15 years) but I can’t say I’m too thrilled about it one way or the other – never have been much of a sports nut. Anyway, here’s the view from my hotel room balcony:

Pretty damn scenic, ain’t it? That’s the lovely Southwest Freeway in the foreground, with the Galleria area behind it. The rather erect tall building on the right is the Williams Tower (formerly called the Transco Tower when I lived here), and is still better known by locals as the “Giant Phallus of The Galleria”. It’s always been one of my favorite architectural features of the city; I recall many a pleasant spring Sunday afternoon spent in the park-like setting of the building’s grounds and waterwall. One of the downsides of Houston has always been the horrendous traffic jams, and this trip has been even worse than I remembered it – no doubt due to all the baseball fans in town. I’m looking forward to getting back home tomorrow evening.

Introducing the elephant in the room

Monday, October 17th, 2005

I have a terminal illness.

There, I’ve finally said it. I’ve known that I wanted to write about this since I started my blog, but have put off doing so because I wasn’t quite sure how to bring it up or how to frame it. As you might expect, this fact has become the hub of my life since I was diagnosed with Pulmonary Fibrosis in April of 2003, but I don’t necessarily intend for it to be the focus of this journal. My illness does not define who I am or nullify my other thoughts and feelings, and that’s what I want to write about – everything: the world as I see it. I’ve asked myself, and if you’re reading this you may be wondering, why I would want to share such intimate details of my life with complete strangers in a public forum like this. I want to be careful to not be all “woe is me” or expect anyone to feel sorry for me. Lots of things may deserve your pity, but I’m not one of them; there are plenty of people on this planet in much worse shape than I am. Fortunately, I have good medical care, close friends and relatives who are helping me to cope with this, and (I hope) a positive attitude towards whatever the outcome may be. But it also occurred to me that one way I might be able to make the best of a bad situation is to express my thoughts and feelings so that anyone else who may be in this position, or know someone who is, can have another frame of reference to perhaps better understand their own feelings. It’s not that I have any expectation of being either inspirational or profound, but as anyone facing adversity realizes, there is strength in numbers. I hope my experiences, as they unfold during the journey I am taking, might be useful to someone else. If even a single other person finds something I might write to be in any way helpful, it will serve to provide deeper meaning to my own life. I’d like to believe that maybe, just maybe, there is some reason for all this.

In the first entry on this topic, I’d like to begin by providing a little background information. Pulmonary fibrosis is a specific type of interstitial lung disease in which a process of inflammation and scarring (fibrosis) occurs in the alveoli (air sacs) of the lungs. This fibrosis results in permanent loss of that tissue’s ability to breathe and carry oxygen. Air sacs, as well as the lung tissue between and surrounding the air sacs and the lung capillaries, are gradually destroyed by the formation of scar tissue. While some specific lung irritants such as asbestos have been identified as being a source of this disease, the vast majority of cases – mine included – are of unknown origin and are therefore termed idiopathic pulmonary fibrosis. There is no known cure. The life expectancy following a diagnosis of IPF is two to five years. While the prevalence of IPF in this country is relatively small, it is unfortunately growing at an alarming rate. Some of the more well-known sufferers include Jerry Lewis, Evel Knievel, Marlon Brando, Gordon Jump (TV’s “Lonely Maytag Repairman” and the general manager on WKRP in Cincinnati), Sam Phillips (legendary owner of Sun records), conservationist-philanthropist Laurance Rockefeller, and former Texas Governor John B. Connally. Approximately five million people worldwide are afflicted, about 200,000 in the USA. Of these, roughly 40,000 expire annually. (Source: Pulmonary Fibrosis Foundation)

Currently, there is no effective treatment for IPF. Corticosteroid drugs (prednisone) are traditionally prescribed, but only about one-third of those given the medication will respond favorably to it. Even then, their main effect is to slow, but not stop, the progression of the disease. There are some experimental medications now in clinical trial, but their effectiveness has yet to be determined. Lung transplantation remains the only other alternative, but this is a risky path even under the best of circumstances. Only a small percentage of those who apply will meet the initial criteria, and many people die each year during the long waiting period for an organ to become available. Rejection of the donated lung(s) is a significant problem for those who undergo the surgery.

In February of this year, I went to Houston’s Methodist Hospital to begin the process of evaluation for a lung transplant. A seemingly endless series of medical tests later, I have yet to be approved to be placed on the waiting list, but the chances of this happening are looking favorable. So far, nothing has been found to exclude me and the tests have revealed that other than my lung disease, I’m in pretty decent shape. I am hoping that the evaluation process will be concluded and that I’ll be listed by the end of the year. Once that happens, the wait time until “the call” comes is impossible to predict. It is likely to be six months to a year, but there’s no telling. I have to be prepared for it to happen at any moment. Even if the surgery does take place, my survival odds won’t improve dramatically. There is roughly a one in ten chance that I won’t make it out of the O.R. alive. Survival rates drop by about ten percent each year after that, and few people live longer than ten years after lung transplantation.

So, I’ve had to concern myself with the very real possibility of death – perhaps in as soon as under a year, if surgery does not go well. It has not been an easy thing to contemplate, and I’ll save my thoughts on that subject to write about here another time. Thank you for reading so far.

National IPF awareness week

Monday, October 10th, 2005

Even though it’s now over, I wanted to mention National Idiopathic Pulmonary Fibrosis week. This is an annual awareness campaign sponsored each October by the Coalition for Pulmonary Fibrosis, an organization seeking to educate the public about this incurable and mostly overlooked disease. You might say that I have somewhat of a vested interest in this subject, but I’ll write more about that at another time. For now, rather than me trying to fumble with the words, please click this link if you’re interested. Thanks.