~ A good friend of mine suffers from this desease, for her I try and help spread the word by copying this.
Thank you for your time ~


Sugarcoating and the Evasion of Reality: by Jim Anderson

“Continue using your medications as directed and come back to see me in six months.”

I’ve been a COPD (emphysema) patient for over six years and that simple statement about sums up my
standard visit to the pulmonologist (I’ve had three of them, so I think it’s fair to conclude that they’re
representative of the field). Every once in a while, following a periodic pulmonary function test, that line
will be preceded by “your numbers are down a bit since your last PFT, but that’s a typical progression of
your condition. Continue taking your medications, blah, blah, blah.”

My brother was struck by Type I diabetes at the age of 14. They told him, “Take your insulin faithfully,
be very strict with your diet and you can go on to live a full, happy and normal life.” Becoming a
physician himself, he managed his disease meticulously and faithfully. He was dead at the age of 39,
following a long and slow systemic degradation that included failed eyesight and kidneys. Official cause
of death: hyperkaelemia. Yeah, right.

It’s been observed that many health care practitioners perceive a patient’s death (and/or dying) to be a
failure of their art/craft/magic/science and do their best to disassociate themselves from it, rather than
dealing with it as a normal progression; as an integral facet of their profession to handle, to continue
treating and assisting the patient to the end. They seem to prefer to “hand off the ball” like a dirty
bedpan. With our disease of COPD, most often by the time they’ve exhausted their toolbox of
bronchodilators, anti-inflammatories, systemic steroids, MDI’s, etc., the patient is in hospice care
receiving palliative measures. The pulmonologist is no longer even in the picture. Which is probably
exactly the way he prefers it. He doesn’t want to be a part of the “failure.” To make matters even worse,
many COPD patients don’t even realize that theirs is a terminal disease simply because their physicians
shy away from being honest and forthright about it.

“The relative neglect of end of life care until recently may be due, in part, to death being viewed as a
failure in medical care, rather than inevitable. It is a duty and privilege to be able to provide
compassionate and effective care from diagnosis to death.” This is from Anna Spathis and Sara Booth in
“End of life care in chronic obstructive pulmonary disease: in search of a good death.”* This article is
well worth reading, and it should be an eye-opener for health care practitioners and patients alike. (They
write of the UK, but things aren’t so very much different here.)

There seems to be a different kind of failure in the general public’s perception of COPD. Somehow, the
reality of it being a fatal disease is not generally perceived or acknowledged, let alone appreciated. We
see our happy ads on TV for Spiriva® and Advair®, with people playing with grandchildren and
blowing bubbles, bowling, bicycling, golfing, leading normal happy lives and always smiling. It’s
curious that none of them are shown using oxygen. Where’s the patient in rehab gasping like a beached
fish while clinging to the rails of a treadmill? Where’s the patient bringing in his groceries with a
flushed face, heaving chest and bulging eyeballs? Where’s the patient taking a break midway up a flight
of stairs, trying to regain more normal breathing before continuing? Where’s the patient in hospice
wearing a full oxygen facemask and whose eyes, if open at all, are glazed by the narcotic effects of
morphine? Where’s the patient who gasps for breath in mid-sentence, completely winded from simply
mumbling a few words? You know, the one for whom the word “outside” is a place where OTHER
people go?

Have you ever seen any such happy ads for, let’s say, chemotherapy? Even in our daily lives, our family, friends and neighbors don’t see us as dying because we’re doing it so slowly, so gradually. They don’t notice that we’re huffing and puffing much worse than last year with the exact same exertion. It happened gradually. They don’t know that our exercise sessions are so much harder on us as time goes on, even though we’re on the exact same regimen. It happened gradually. (I used to run errands and go grocery shopping after pulmonary rehab; now I go home and collapse and take a three or four hour nap instead, because I’m completely spent. Over several months, this has evolved from being an occasional practice to a regular one.) I expend more resources for the same work.

They can’t understand or imagine the dread we feel before taking a shower (if we even tell them at all,
that is, how hard it is to breathe while we’re in there, even with oxygen; and how it’s one task that we
simply can’t stop in the middle and set aside for later completion – you have to finish this one, there’s
no other way around it). I have a friend and neighbor who looks at me askance when I’m not wearing
my cannula and asks why I’m not using it. (I respond, of course, that sometimes I don’t need it while
I’m at rest, if my oxygen saturation, pulse and my shortness-of-breath cooperate.) He shakes his head in
silent reproach when he rings my doorbell and sees that I’ve been taking a nap in the middle of the day.
He scowls slightly when he spots my ongoing household projects collecting dust, rather than showing
the daily progress that a “normal” person would. He hasn’t actually said anything of the sort, but I’m
guessing that he thinks I’m just plain lazy, and possibly a faker and/or a hypochondriac as well. He is
one of those that just don’t understand. And he’s far from alone in that respect.

For whatever reason, COPD patients just don’t get the same regard as, say, a cancer patient, even though
our disease is MUCH more likely to result in an inevitable death. The word “remission” is not in our
lexicon; nor is the word “benign.” Maybe there’s a lack of drama, excitement or immediacy about us.
Maybe it’s because, until now, we didn’t even stand the wisp of a chance of a real honest-to-goodness
CURE (or remission), so why bother fretting about it? (No, I don’t know if there’s a cure even now, but
at least now we have an option – a possibility — that wasn’t available until recently, i.e., stem cell
treatments) We all know the color of a cancer ribbon. What’s the color of a COPD ribbon? As I write
this, I haven’t got a clue myself if such a thing even exists.

Just to keep things straight here, this is not written in some attempt to evoke sympathy. And when I talk
about getting attention, I don’t mean the kind of attention that a kid (or perhaps a hypochondriac) craves.
I’m referring to raising both public and professional awareness of what exactly is going on here. Let’s
bring COPD out of the darkness and into the spotlight. This is currently the fourth leading cause of
death, predicted soon to be the third. Patients should be outraged, their friends and relatives should be
outraged and by golly, it’s time for our medical practitioners to get mad and get on board in demanding
change and progress. And demanding that the wayward FDA get back on track and once again start
serving the public interest. The FDA is not on my side when my breathing meds alone cost $400 a
month. The FDA is not on my side when it takes years to approve medications that are already in
common use elsewhere (the rest of the world had Spiriva® for two years before the FDA approved it for
use in the U.S.). We’ve been hearing about roflumilast for over six years now. Where is it? And how
much will it cost once it’s approved (as it most certainly will be and we all know it)? The FDA is not on
my side when it denies me – a terminal patient with nothing to lose and everything to gain — access to
experimental drugs and procedures. The FDA is not on my side when it places itself squarely in the way
of stem cell treatments and research. The FDA is not on my side when it tries to claim exclusive control
of the very cells within my own body and dictate how I am allowed to use them (and nonchalantly
violates my most basic civil rights and constitutionally protected liberty interests in doing so). The FDA
is not on my side when it perceives Big Pharma to be its client, rather than the American citizen.

My doctor is not on my side when he tells me to take my medications and shut up already. He is not on
my side when he tells me that the only option I have left is to put my name on the transplant list. He is
not on my side when he tells me what a bother it is to try to get special access to experimental
medications. He doesn’t even have the nerve to simply prescribe everyday medications for off-label
usage. (And lest anybody recommend that I just go out and get a new doctor, be aware that I’d be
looking at a minimum 400-mile round trip for the privilege, on each and every visit.)

Where am I going with this diatribe? I honestly haven’t got a clue. Perhaps I’m just venting, but
hopefully I’m putting out some information and insight to those who don’t already have it. People don’t
really “see” us except to notice our oxygen tanks and our “nose hoses.” Perhaps I can open up some eyes
to the reality of what’s happening in our part of the world that many haven’t ever really seen, and that
some simply choose not to see. But I do know that I’m tired of being a medical second-class citizen in
the eyes of the FDA, doctors, friends and the general public alike. I do know that it’s foolish to ignore
the realities and pretend that all is well if only we just take our meds as directed. I do know that I want
action when it comes to research in every conceivable branch of science, a serious examination of all
avenues and possibilities.

I do know that I want the FDA to start working for my best interests instead of against them. I want people to understand
why the fledgling science of stem cell therapy is so much more attractive to me than spending a year away from home in order
to get my guts eviscerated and rearranged, followed by a lifetime of gulping gobs of horse pills and fleeing from germs.
(I know I really shouldn’t knock transplantation because it must necessarily remain as my ultimate fallback option.)

I haven’t given up on me and I don’t expect medicine or science to give up on me either.
While discussing my upcoming stem cell treatment, one of my pulmonary nurses made a comment to the effect that
“I don’t think I’d want to live forever,” as if to imply that immortality was somehow my goal.
I still feel that this comment was a bit flippant (possibly even snide) and that it trivialized the nature of my disease and the question at hand. (Would she have made the same remark to a chemotherapy or a bypass patient?) I answered, quite simply, “No, I’m not trying to live forever. I only want to live long enough to die of SOMETHING ELSE.”

To date, there are only just a few select stem cell procedures that have been approved for use in the U.S.
by the FDA. The one I need is not among them, and I think it is just plain all wrong that a terminal
patient like me (once again, with nothing to lose and everything to gain) is forced to leave the country
for a week (and incur many thousands of dollars in costs, not to mention the strain on my limited
stamina) to get my treatment, which could be easily be performed in a matter of hours on an outpatient
basis, possibly covered by Medicare and/or private insurance. The approval of procedures aside, the
FDA has now – in a rather underhanded and sneaky fashion – taken the position that a person’s own
stem cells will be classified and regulated as drugs (with the multitude of regulations and procedures that
go along with that)!

On a most basic level, this is overstepping their authority by trespassing into the realm of medical practice. Furthermore, it is in direct opposition to constitutionally protected liberty interests. The FDA (more heavily influenced by the deep pockets of Big Pharma than anything else — and Big Pharma stands to lose tons of money through the successful implementation of routine stem cell therapies) must be stopped from their attempt to usurp our rights through their sneaky backroom subterfuge, because unchecked this will have a profound effect upon virtually all future autologous stem cell practices in this country. The consequences in terms of costs and lives are simply incalculable and unimaginable.

This battle must be fought and won. A physicians’ organization has been formed to oppose this “hostile
takeover” of our bodies and our rights – The American Stem Cell Therapy Association (ASCTA). You
can learn about them and their fight (OUR fight, too!) at http://www.stemcelldocs.org. There is a
corresponding patient and general public sister organization at http://www.safestemcells.org.

Together we must fight this battle for control of our own bodies, for our own treatment, for our own health and indeed for our own lives. We cannot entrust these precious jewels to the FDA, which has repeatedly
proven that it has been hijacked to serve those it was intended to regulate. It serves Big Pharma and big
business interests, not the American citizen. Take the time to visit these websites, learn the truth and
then make your voice heard, loud and strong. This may not directly affect you today or tomorrow. But I
doubt there are very many people in this country who don’t have an afflicted friend or relative who
might benefit from stem cell therapy sometime in the very near future. Will it be available for them?

We must stake our claim to that future. It’s ours by right. We can’t let those rights get brazenly grabbed
from us by big business interests and power-hungry bureaucrats. We want – and demand – to live our
lives to the fullest.

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their
Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of
Happiness.”

I can’t alter the path behind me. I demand a voice in the charting of my future course.

Written By:

Jim Anderson
June 17, 2009

http://www.youtube.com/watch?v=-ITZBBV8Syg
Song by Lily Allen

I've been scared and nervous this week.
I got a call from my obgyn telling me they found something wrong on my check up and i need to go have a biopsy next wednesday to find out what exactly is wrong.
I've had friends tell me it's gonna be fine and i have nothing to worry about. That didn't help me much though, but it did made me feel loved.

It wasn't until I talked to my friend Martin from Denmark that i started to feel better. What he said helped me enough to feel ok now. He said:  "You already know you are sick, you're just waiting to hear how they will cure you."
Way to go Martin! ;D

I went and got myself a treat today. Gonna kill stuff in World of Warcraft later together with my friend Kenneth.
Will talk again to my boyfriend in New York tonight on aim.
So i'm ok for now and i'll just wait and see what happens next.

Meanwhile I'm wondering if the priest from the Saint-Peter's cathedral is drunk or having a sugarrush from all the sweets from the carnaval. He's ringing his churchbell's now for like fifteen minutes ...
YO PADRE! Give it a rest >_>