Prior to publishing this web site, I asked a
few people living with COPD to write and say something
directly to you.
These are individuals whom I have met these past few years on line and for
whom I have tremendous respect.
They have helped me, by their knowledge of the
disease, sharing of same, and more than anything, their friendship and
understanding... I PROUDLY introduce them
(NOTE to the reader. COPDer's refer to their lung function capacity by
their FEV1 number and all were originally written in 2005, with updates 7+
From John O To You
"I have lived with COPD for 27 years."
As a child I was never what you'd call in great health. I
was underweight, had asthma and allergies (which no one really knew how to
treat back then) and was just generally sick a lot more than the average
kid. My parents were both heavy drinkers and smokers, two habits I
was all too happy to get into when I reached my teens. I was smoking more
than two packs a day, often lighting one from another, until, at 36, I was
inspired by my brother, who had quit, to follow his example. And did, cold
turkey, before the gum and patches and other aids had made their
Even quitting at that relatively young age (this was in 1974) it
wasn't soon enough. Added to what I think some day will turn out to be
genetic markers for COPD I was already having symptoms of sob, which I
routinely rationalized and denied (didn't everyone in their late 30s get
out of breath climbing stairs, or playing sports?) Six years later, in
1980, I had some chest tightness and went to a doctor. He (he was about
80) took an x-ray and told me that other than "a little emphysema" I was
fine, not to worry.
I was shocked. What did he mean, "a little emphysema"? And not to
worry about it. I didn't get much sleep that night, and the next morning
started calling around for a second opinion. The next doc was a
pulmonologist (the first guy hadn't been) and correctly told me I had COPD,
explained what it was, told me it was incurable but manageable, and
prescribed an Alupent inhaler, an early version of albuterol. Said to
check back with him. I kept this doctor for the next 22 years. Meanwhile
my breathing got seriously worse, and to this day I don't know why. But
after trying Atrovent, Vanceril, theophylline, and finally the dreaded
prednisone, by the end of the year I was in the hospital, with the usual
IVs antibiotics and steroids. Maybe it was pneumonia--I don't really
remember. Thing was, I was really bummed out. At 43, even after doing the
right thing by quitting smoking, it seemed like my life was just about
But here's the amazing thing: for the next 15 years, except for
the occasional head cold, I was never sick. And though I had an
treated at home with antis and pred, in 1995, after that, until 2002, I
was mostly OK, and lived an active life, traveling, working and enjoying a
variety of activities. COPD didn't keep my wife and I from traveling, to
most of the US and all the Canadian provinces, in the late 90's.
But then I got sick in that
same year (2002), and went to the hospital, and
again, twice, in 2003, and again in 2004 and 2006, all hospital stays, as
well as numerous exacerbations in between. As recently as the summer of
2001, I was hiking in the Canadian Rockies with just a pocketful of
inhalers. SOB (shortness of breath)? Sure, but manageable. And now
this--O2 around the clock, pred (prednisone) most of the time, I even had
Levaquin break my Achilles tendon in '03, and couldn't really walk for
By that time I was in my mid-60s--how to explain this radical
decline? I came to the conclusion that I was thoughtlessly exposing myself
to germs and that as I got sicker my immunity to the diseases that the
germs carried got whittled down--a vicious circle. Example: my wife and I
volunteered in the public school system, putting on programs during the
school year, many of them in the wintertime.
I'll put it in the words of a nurse I had: "You were around
hundreds of small children. In a public school. In the winter....
Hello!!!" This is just the worst of many examples. After getting junked up
for months in the early part of 2006, ending in yet another trip to the
hospital, I decided to simply avoid many situations involving any real
numbers of people. That meant giving up the gym and working out at home;
going to movies and other events at non peak times. Same with shopping.But
here's another important thing: no doctor gave me any of these tips. I
got them from other COPDers on online forums. Sharing experiences with
others who have been through the same things I have has helped me deal
with the disease immensely.
Today? It's been 15 months since I've been in the hospital or had an
exacerbation, and almost a year since I've had any prednisone. I feel
better than at any time since '03 or so, and just turned 70.I
live an active life,
taking my LOX portable whenever I go out. I publish a newsletter in my
neighborhood and am learning to play the piano. The forums have showed me
by the examples of many of their members that
life is not over because of COPD,even
if you're getting older.Keeping
active with a daily exercise program will go a long wayto
creating a positive attitude; and the attitude, in turn, keeps me part of
the larger world around me. I try not to dwell on the fact that I have
COPD, but I don't forget it either, and the adjustments one needs to make
with it, and that I've had to make through trial and error for the last 27
You CAN do this too. But; you've got to want it. I hope you
An Update from John O,
August 2012 (7 years later)
Well, it's 7 years later, and I just tried to blow out 75 candles a couple of
weeks ago. A little older , a little slower, and a few more tales to tell. 2007
and 2008 were fairly uneventful, but 2009...
On April 1 I suffered a pneumothorax in my right lung, which required an
ambulance response and immediate surgery. Pneumothorax, or collapsed lung, is as
you know a situation where an opening in the pleura occurs and air leaks into
the chest cavity. It can be a relatively minor affair, or a major blowout such
as I had, where the whole lining of my right lung folded into the middle of my
chest. On the way to the hospital I had a pulse ox of 54. In the e.r. they
inserted a tube through my armpit into the pleura to start to drain it. Four
days later (they kept me) they did a more substantial operation where they
sclerosed (think 'glued') the pleura back together, the drainage having been
completed. They can do this with a variety of agents, and with me they used hot
doxycycline. It was the most painful thing I've ever experienced.
my breathing very slowly--a week later I'd desaturated to the 70s on 6 liters
of O2 in a walk of 50 feet or less.
I did 14 days
on an intermediate care floor and another 14 in a "rehab" facility, which as you
also are probably aware is a nursing home with a smattering of "rehab" type
activities. But a couple of weeks after getting home I was doing pretty well,
resuming my exercise routines, eating well, and so on. But back to the e.r. for
a moment: they happened to be working on me in front of a med school class, so I
got a free lecture; and among the things the doc said was
that after you had one of these blowouts there was a
more than 50% chance of another one down the line. And after the second on a 75%
of a third, and so on. Some of these could be fatal, but of course so could
anything, given my age and history. Well, sometime a week or so later, and still
pretty loopy on morphine, I found Peggy and myself talking to a hospice
counselor, and once my records had been examined and my pulmo gave his OK, I was
a hospice patient!
Even once I'd
transferred to the "nursing home" I began to wonder if, instead of declining, I
was improving, the way one would expect after an admittedly rough couple of
weeks; but what did I know? I felt the threat of a second pneumothorax looming
above me. But my breathing started to improve as well. Counselors came out to
the house, at first twice a week--a nurse and a social worker. We talked about
end of life options, paperwork that we should be doing. The social worker told
me how to get a DNR bracelet. The nurse took my blood pressure and asked how my
bowels were doing. This went on and not much else happened. They cut the visits
to one a week. The social worker took Peggy aside to talk about caregiving and
widowhood. It was all a little strange. Meanwhile I had a grand mal seizure and
a bout of diverticulitis, both requiring overnight stays. No problem with
hospice. Of course Medicare paid for it either way. And I went home. They say
once you've had one of these there's a 50% chance of another--but I never have.
After six months hospice care determined I no longer needed their services, and
I was discharged. I'm told that about 15% of hospice patients go this route. And
at least in the US, (I’m an American) you can get back in at a future date if
your circumstances warrant it.
Today I'm puffing along with an FEV1 of 22% and need 5-6 liters of O2 to get
around. But hey....it beats the alternative, as they say.
first found out I had COPD my FEV1 was 34%, now it's 20%.It’s been almost 10 years ago that I was diagnosed with this disease COPD. I never had heard the
word before and sure didn’t have a clue what it meant other than the fact I
thought I might as well curl up into a ball
It took me a while to believe deep down that
this was not a death sentence, that I could live a
“good” life…and I do…..maybe not as active as I once was but I am still around
to enjoy my kids and grandkids, and the seasons, and the holidays, and the
sunsets, and the sunrises and the birds flying and the chatter of friends,
and the sound of rushing water while hiking.....and
all the things I may have done before but now a little
slower……I could have listed so many things but hopefully
you get the idea….Life goes on and so do you.
I work a little harder at exercise than before and it truly can
take my breath away LOL, but it also gives me the strength
to breath easier….
If I could only give one piece of advice it would be to learn all you can and
listen to what everyone with the disease
has to say…sort through it and find what worksor you and
throw out the rest of it….
And while on this journey of life, don’t forget to live!
Later, September 2012
It’s hard to
believe it’s been seven years since I first wrote about my COPD for newly
diagnosed. Many things have changed yet most remain the same.
I had LVRS almost
3 years ago and my results were mixed. I also had a chest wall hernia repair so
it is quite possible to have surgery with less lung capacity and get through it
“numbers” have dropped quite a bit I do most everything I had been doing so many
years ago. Especially helping to take care of my grandkids.
My advice to
anyone reading this would be to keep moving; however you can, and for as long as
you can. Baby steps work too, but just keep doing it. Be honest with your
doctor and not afraid to ask questions, this should be a team effort; it’s your
life at stake. If your doctor gives you little hope, find another as quickly as
you can. You can continue with a fulfilling life, perhaps a bit slower than and
not as chaotic as before but very precious.
Relax and remember
to laugh often, not only is it good for the soul, it helps our breathing. And
never, ever give up!!
to you in 2005....
(and updated 7 years later)
My story: You can still have
a very good quality of life.
In 1994-96 I was having some nasty asthmatic bronchitis attacks when ever I got
a chest cold. Finally after finding a good Asthma/Allergy specialist, I was
diagnosed with moderate COPD and severe asthma.
Over the years my FEV1 has gone from 50% to 30% but may have not declined as
fast had I taken the doctors advice and quit smoking sooner than I did. ( I quit
19 months ago.
My advice to all newly diagnosed is to find the best Pulmonary specialist you
can find. If necessary, interview several. Don't just settle.
Do your homework and research and know this disease and it's treatments like the
back of your hand and insist on trying them. When you find one that makes YOU
feel the best insist on continuing it.
Quit smoking at once. Your very life depends on it.
Don't let yourself slip into self pity. Fight like hell against this and, do NOT
play the invalid because you aren't one.
This is not an immediate death sentence, but you may need to make small
adjustments in the way you once did things. Just slow it down a bit and enjoy
every minute of your very precious life.
Updated August 2012; 7 Years
exceptionally well but just very busy; even my pulmo is surprised that my lung
function hasn't deteriorated nearly as much as is the norm. Perhaps it's my
attitude and the fact that I refuse to let this disease turn me into an invalid.
I push and push myself, even if I am feeling like hell.
There has been a
very recent medication change...from Foradil to Sympicort starting today , more
for my convenience. It's nice to get rid of one med and have the same benefit
from two combined.
I did get rid of
Pulmicort 6 months and changed to Qvar. I do feel that works better for me. So
now it's going to be used only when I feel an infection coming on.