As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.
As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.
Why you shouldn't smoke and what it is like to have Emphysema from those with the disease.
Most of us started smoking back in the 40's and 50's. The money spent, even back then, by the tobacco companies, were in the billions of dollars, just in advertisements and cigarette handouts. Even now, their advertising dollars are directed to the younger generation. If you would like a sampling of the older advertisements, we are thankful to Chickenhead.com for making these available to us. Just click on Cigarette Ads
I have a disease know as emphysema. I would like to give all teenagers a brief description of my life as a person with emphysema. The facts that I provide to you will be a true-life experience of my trials and tribulation of my disease. Young people sometimes do not realize that smoking can destroy their future. They do not understand the problems that can develop from smoking. They do not understand the affect it can have on their health.
When I was a young person, I never realized that smoking could diminish
the most important factor in my life my breathing. When you can't
breath you begin to realize how insignificant a cigarette can be in meeting
your daily habit. I wish now I had never had a habit of smoking.
I realize now breathing is a life function you can not live without, but
cigarettes you can. If you had endured the pain I have suffered throughout
the last ten years, you would never smoke a cigarette. I have had
several collapsed lungs. I have had my back cut open, and had my lung partially
removed. I have also spent months at a time in a hospital away from my
family. The suffering is still not over; I now have to have my other lung
partially removed. This procedure will prolong my life, for a later
Now, do you think I have suffered enough for my desire for a cigarette? If you smoke you could truly experience my life. I would never wish this disease on anyone. Please, think twice before you smoke. If you smoke now, please stop and remember the story of a lady who destroyed her life for a cigarette.
We are sorry to report that we lost Glenda on January 15th, 2000
This is the way having emphysema makes me feel.
Take a deep breath, blow out 20%, now walk around holding the rest in forever.
Do you like to shop for new clothes? For me it is like running track while
getting dressed, only you have to stop 3 or 4 times before you finish.
It changes your whole life, nothing remains the same!
Special Note: Jan has now received a lung transplant and is doing very well!
My name is Pamela Costilow and I am 16 years old. I lived with my grandparents from the time I was two until I was 16. My grandmother, Janet Costilow was diagnosed with emphysema when I was about four. I have seen first hand what this horrifying disease can do to a person. My grandmother went from a person who could do anything she wanted to do, to a person who is on oxygen 24 hours a day. She used to be able to go places everyday. Now she is often to worn out to go to the store, and it is impossible for her to go shopping with out her motorized scooter and an oxygen canula in her nose. It's hard to believe that all of this has come from this disease. Over the years, I've watched my Grammy's health get worse and worse. As she has become sicker and sicker, it's been harder and harder for her to do things that she loves to do. It's difficult to watch her go through the things that she goes through. I feel guilty as I watch her struggle for each breath she takes, while I have no trouble breathing. I admit I have NO idea what this feels like to struggle for breath, but, by what I've seen, it's a feeling that I never want to experience.
Living with a person with COPD is not an easy task either. It is very stressful, and you have to be understanding. You have to be very careful, and most importantly, you have to realize that this person CANNOT BREATHE. they can't stand the smells that normal people can. You have to watch all of the things you wear around them, to make sure that the smell doesn't smother them. You need to clean a lot to make sure that the dust doesn't bother them. It's difficult, but not as difficult as having to except that the person that you love so much is suffering so much.
I admit that I got frustrated with my Grammy a lot of times... I didn't feel that it was fair that I had to do all this extra work when my friend's didn't. I didn't think that it was fair that I couldn't wear all the sweet smelling perfumes that all my friends got to wear. But, maybe I've grown up a little bit, because I see now that it's not fair that my Grammy is suffering from this disease. It's not fair that my Grammy can't breathe, it's not fair that all of her friends are still going out having fun with their family and friends and she is not able to. All this time I was selfishly thinking of myself when I still had all of my life ahead of me.
Maybe a lot of this was because I didn't fully understand my Grammy's disease. I'd heard of emphysema, and I knew that smoking could cause it, but I didn't really know the real effects of it. I didn't know what an impact it would have on my own life. It seems like these things only happen to people you don't know, but this is happening to someone I really care about. I do not want my Grammy to have to go through this. I wouldn't want this to happen to anyone-- not even my worst enemy, and it's horrible to see that my Grammy is living with this.
Of course I've considered smoking---
I mean, really and truly, who hasn't? And yes, even after seeing what my
Grammy has been going through, I still considered it. I mean, I thought--
well, what are the chances that something like this, something this horrible,
would happen to me? But then I really thought about it. Maybe I should
be looking at the chances that this WON'T happen to me. Maybe there is
greater chances that this WILL happen to me than that it WON'T. Maybe my
Grammy thought this couldn't happen to her, but it did. And look at all
those people that it did happen to. What makes me think that I'm so great
that it won't happen to me? I'm no better or different than any of those
people it did happen to. So every time that I watch someone light up that
cigarette, I think of what I've seen my Grammy go through, and how, yes,
it could happen very easily to me if I join the group of smokers. I just
want everyone to really think about it before they start. It's not a glamorous
life that my Grammy now has to live, and I really don't think that any
thing is worth having to go through what she has to go through. I know
that if everyone could witness what my Grammy has to do every day-- from
all the medication she has to take, to the oxygen tanks she has to lug
around with her, and if they saw how she struggles to do everything she
does, they would make the same decision as I've made.
I hope I have enlightened a few of you and opened your eyes. Thank you for your time.
Since I last sent the below message, I have been approved for a Lung Transplant. I also am now on full time oxygen where I have to have tubing around my ears and placed in my nose from an oxygen tank so I can breathe in more oxygen than what is in the normal air because my lungs do not work well enough. When I go outside, I have to wear or carry a tank that has oxygen in it so I can breathe better when I walk. I also now have to sleep with what they call a CPAP. It is like a hat that goes over your head and then hoses blow air into my nose so I can breathe better while I sleep. This is not me, but it looks like this;
My name is Gary Bain, I am 58 and a grandfather to a 12 year old boy, a 12 year old girl, an 11 year old girl, 2- 7 year old girls, a 6 year old girl, a 5 year old girl, a 4 year old boy, and a brand new 4 week old little boy. They all call me Paw Paw, except for the little guy and he just grins.
I started smoking when I was about 11 or 12 years old. I kept right on smoking and smoking until it got where I was having a hard time breathing. I went to the doctor and he told me that I had to quit smoking because I had Emphysema. Emphysema is mostly caused by smoking after a long time and you don't know you have it until it is too late. I could still breathe pretty good but couldn't walk as far as I used to but kept on smoking anyway because I did not believe the doctor. I still didn't quit until my 58th birthday which was just last February 28th. I can breathe better , as a matter of fact, if you will follow the instructions I have typed out below, you can tell how I can breathe now.
Sit down somewhere and relax a little and when you feel comfortable, take your right or left hand and with your thumb and forefinger, hold your nose shut. While holding your nose shut, cover your mouth tightly with the rest of your hand so you can just barely breathe through your fingers. Now, walk for about 40 steps and turn around and come back while still breathing through your hand.
Now, do you see how hard it is to breathe? Especially when you try to walk around? That is what Emphysema is and that is what smoking can do to you. Not for awhile, but when you are older and it is too late to do anything about it. Please don't even think about smoking.
Hi, My name is Mike Bain
I am 33 years old, I have a wife, a daughter, 7 yrs old, and a son 4 yrs old. I have lost 2 relatives due to smoking. My uncle died of complications from having emphysema at the age of 57. My grandmother died of cancer at the age of 71, she was diagnosed with emphysema in her 30's or 40's, it progressed in to lung cancer, brain cancer and death. That was the worst part of my life, to see my grandma live the rest of her life like that. That's the last memory I have of my grandmother, her last days.
My grandmother was never a big woman, but always a woman who had it together. When she was diagnosed with cancer, she asked the doctor if it would go to her brain. That was one thing she did not want, I'm guessing the doctor didn't give her a straight answer. How could he? After being diagnosed with cancer she died within 6 months. Before my grandmother passed away she had lost 30% of her original weight and most of her hair, she hardly remembered some family members, and would have episodes of delusions and outbursts. This could have been due to radiation and the prescribed drugs, whatever the reason, it was from the result of smoking.
My dad is 58 years old, he was diagnosed with emphysema when he was 45. He doesn't smoke anymore, but his emphysema has still progressed. He has been on oxygen for about 6 weeks.
Although we have never had the same interests, emphysema has interfered with too much of the common life my dad and I once had. My dad used to help me with so many things with my house, and every thing else. My dad is too young to be confined to oxygen so he can walk around the house or to another room. At my age, it is so hard to see him diminish like he has. My kids are aware of what's happening to their "Paw Paw", but they do not know how I feel. After all of this I STILL smoke, I have been for a little over 10 years I am trying to quit but it is very hard. I'm always thinking of my kids and how much I do not want them worrying about when I was going to die from smoking, crying at every mention about their dad's deteriorating health but why didn't my dad quit before it was too late? He was hooked!!
If you do not smoke, do not start!!!!
My name is Brenda. I am 50 years old but my heart feels much younger. I adore music. I have played the guitar for more years than I care to remember. I love nothing more than to get out my guitar and play and sing.........alone or with others. I grew up on Led Zeppelin and the Grateful Dead. I remember all the times when I was learning to play guitar, all the hours I sat practicing till I got it just right, puffing one cigarette after another. I thought it was just way cool to stick my lit cigarette into the end of the guitar string, and let it smolder there while I was playing. What great times! What fun that was! I was young and invincible.........I thought I could quit anytime.
I still love to play. Things are a little different now, though. I can't sing now. I don't have enough breath to sing. I don't have enough breath to walk across the room without stopping and gasping for breath. I don't have enough breath to do much of anything well, unless I can do it sitting. I don't smoke anymore. I quit long ago. But it was too late to save my lungs. They are as gone as Jerry Garcia.
Don't blow it..........Get a life!
We are sorry to report that we lost Brenda to our Lord on November 28, 1998 at the age of 50.
Hi, my name is Marlene.
I am 49 and have 17-year old twin daughters. I started smoking when I was 18 years old. And, right away, was a 2 to 3 pack-a-day smoker. In the last 31 years, I have quit smoking only once, and that was when I had my wisdom teeth chipped out, one week at a time. So, for 4 weeks I could not smoke. But, because a person that I was near to smoked, I started up again.
Some of you may say, "I'm young, I can smoke for a few years, and then quit." But, you can't, really. If your parents smoked, and a lot of parents have smoked around their children, then you have been breathing second-hand smoke for 12 or 15 years already. And, you may be showing early signs -- do you start coughing when you run, roller blade, play basketball, baseball, tennis, or do some other sport? Do you have a lot of phlegm that you cough up? Do you get colds or the flu often? How about allergies -- do you sniffle, sneeze, do your eyes get goopy or red? If you do, then you are probably showing early signs of Emphysema already.
Is smoking addictive? You just bet it is. I have tried to stop smoking so many times that I can't count. I have tried using the nicotine gum, the patch, the aerosol nasal spray, hypnosis, stop smoking classes, support groups, and everything under the sun. Stopping smoking is worse than dieting, stopping the use of alcohol or biting you nails, and, from what I've read, worse than stopping a drug addiction. But, nicotine is a drug. The MOST addictive drug of all.
When you first stop smoking, all you can think about is -- I want a
cigarette..... over, and over, and over, and over ..... You put your
arms around yourself, and hug yourself tight, tears roll down your face,
your hands tremble, you can't breath (ha, you can't breath anyway when
you have Emphysema or chronic bronchitis--but it gets worse), you start
shaking. And you bite
your tongue -- to keep from begging someone to buy you just one more pack, or get you just one more cigarette.
And, after many, many, tries, and you finally succeed, you can never just have one cigarette!!! That just one cigarette will start the vicious cycle all over again.
So, the best course of action, is to "JUST SAY NO!" when friends hold out a cigarette for you to try. In fact, that first cigarette makes you feel pretty sick -- nauseous, light headed. But, if you get past that feeling, then you are hooked.! And, it's been proven that you're hooked almost for life.
Now, there is just one more thing I want to tell you. And that's what my life is like now. I have had to quit work, because I can't breath. And because I can't breath I am taking 33 pills and 5 inhalers a day. While these medicines help me, they don't cure me. THERE IS NO CURE FOR EMPHYSEMA!!! And another side-effect of these medicines and of not having enough air to breath is that my memory is gone. When my teen-age girls tell me something, I don't remember it the next day. Also, I cannot go to their school performances, award ceremonies, nor can I go clothes shopping with them, nor shopping with them for groceries. Instead of me helping them, they have to help me -- get me something to drink, water, snacks. They have to do the cleaning, dish and clothes washing, help with the cooking. OK, I can hear you. You have chores, too. But, you are not the primary person -- you are helping your parent.
I hope this has helped to make you more aware. Having Emphysema
is NO picnic. Thanks, for reading/listening.
My name is Myrl. I was a teen , maybe just like you. I liked hanging out with the gang at the corner drug store for burgers and shakes--and a cigarette or two. I played basketball 7 years, was on the softball team. Spent summers swimming and fishing with friends--and sneaking a smoke now and then. After high school, I was girls basketball coach at the local grade school for a year. Then went to work at Sears in Atlanta. Met and married a wonderful man who loved the outdoors as much as I did. We cashed in our profit sharing , borrowed the rest and bought a farm. We started small and grew. Working together in and outside was a joy. My favorite thing was raking and bailing hay. In early spring 1970,I began to tire easy and get out of breath. That winter I had pneumonia. While in the hospital, I was diagnosed with emphysema. I didn't know what that was and didn't ask. Getting my strength back took 6 weeks. Two years later, we had to give up farming because of my health. I was coughing so bad from the dust and barn odors I couldn't breathe. In Feb.1988, I had pneumonia again. This time, I spent 3 weeks in the local and Nashville hospital --4 days in the CCU . Since then, my lungs have slowly deteriorated. Now, I'm a 71-inactive-young at heart- in end stage of emphysema caused mainly from smoking since I was 14. Nicotine addiction has taken a very active, energetic person to one who is a dependent burden on her family. I now sleep on a hospital bed with the head elevated. Beside that bed is a potty chair I use when I have the breath to get on it. When I can't ,my husband puts a bed pan under me. A simple cold puts me in the hospital for days. I am on oxygen 24 hrs. a day--Take nebulizer treatments 4 times a day. Use an inhaler and take a handful of pills. A meal gets cold before I can eat it because of shortness of breath. Still, after the way smoking has altered my life-I want a cigarette after I eat. I move around the house in a wheel chair . There is no cure for emphysema. Only medication to make existing a little more comfortable . I don't know which is worse as there are so many side effects to the medicine. One drug I take causes loss of concentration. There are times I forget what I'm saying in mid-sentence. The most embarrassing is the weight gain and thinning hair You will learn about the more serious ones once you're hooked on nicotine and can't kick the habit. My golden years turned to tarnished brass while my fingers were being stained with the cigarette I held in them. Smoking isn't really the in thing. Be chic and say "no thanks" Don't let cigarettes make you a spectator--be a player.
We are sorry to report our loss of Myrl on 2/25/01, she is one of our angels now of EFFORTS
For any of you that are interested in seeing just how much the emphysema will affect your lungs take a look at my web page: http://www-medlib.med.utah.edu/WebPath/LUNGHTML/LUNG056.html . There is a link there to many pictures of diseased lungs and the first one that comes up is the lungs of a person who passed on due to smoking related causes. When I look at that picture, I feel like I am really looking inside myself at my own lungs. That alone is enough to make me never want to even see another cigarette in my life. Now I wonder what made me continue to smoke, knowing the dangers of the addiction like I did. I have asked myself many times just why would I do such a thing after all the misery that it was causing me. Call it a "death wish" I suppose, but when it came down to the time when it was quit or die, I chose to live and quit smoking.
That choice does not have to be yours, If you have been a smoker for
only a few short years, then your health may or may not be compromised.
You may think that just because you do not feel like it has bothered you
that you don't have to quit. But, the disease that smoking can and does
cause is Emphysema, and it is a sneaky type of ailment. You can have it
for years and never realize that you have it. You just automatically adjust
your life around the slow changes that come to you and your body. If you
find that you are getting a little short of breath when you walk up a flight
of stairs, you start waiting on an elevator, if a couple of blocks walk
down to your favorite convenience store is getting too much for you; you
send someone for what you want or you drive down there to get what you
want. We compensate for those things and go on believing that there is
nothing wrong with us, we are just "out-of-shape" . There are many other
signs that we are going to have problems in breathing should we continue
Special Notice... We lost Bud following removal of a nodule on one of his lungs on August 23, 1998. His pages are kept up by a friend and all are welcome.
Michael "Mickey" Wagner
My name is Michael "Mickey" Wagner;
I started smoking at around 14 or 15 years old. I can't remember the date but I remember the first cigarette I ever lit just like it was 10 minutes ago. I am 54 years old and have a wonderful wife and a beautiful 7-year-old daughter. Now because of emphysema my wife will never have the good husband that she deserves and my daughter will never have the father that other children have and this tears my heart out. What a lot of people do not realize is that emphysema is terminal.......it kills you. The problem is that it is very sneaky and it destroys a little bit of your lungs at a time so you don't even realize that there is a problem until it is too late.
What's it like?
Ok pick a distance to run that you know will make you really breathe hard and don't cheat, then find a small straw not one of those monsters like McDonalds gives with their drinks, put the straw in your mouth and then run that distance like your life really depends on it and then stop and leave the straw in your mouth and breathe only through the straw until you are breathing normal again. Takes a while doesn't it?
This is what it is like for me to take the garbage out to the street at a slow walk and walk back to the house. Nothing is ever the same and instead of doing the things you like to do anymore you base your whole life around the breathing problems that this is going to cause and if you think you can even do it at all. You become very sensitive to odors, sometimes you don't eat because you need that room to try to breathe etc. It is like a Sci-Fi nightmare that nobody gives any attention until it is part of his or her family. I started smoking because my friends smoked and I thought it was cool and now the price that has to be paid for being cool is that I will die from it and my family and relatives are also suffering from it. Please do not start a habit that can take your life and ruin the lives of the ones that love you. Back in the mid to late 70's I had a 10 year heroin habit that I quit and this was a piece of cake compared to quitting the smoking habit and by no stretch of the imagination is quitting any habit easy.
Emphysema is a silent killer that sneaks up on you, as you get older you get a little short of breath easier that you used to and you think I'm getting out of shape or I'm getting older but no big problem. The when you are in your late 30's up you get sick, go to the hospital with usually what is pneumonia and then they give you the news ............ you have COPD (Chronic Obstructive Pulmonary Disease) EMPHYSEMA.. This is a shock but still not to bad because you can still do things that you want to do but you start to read and check it out and find out it is terminal and there is no cure for it. As time progresses you get worse and not able to do more of the things that were normal routine chores. You go through depression that is common with this disease and then you are able to do less and less and then you see the stress and sadness this is putting on your family and friends. I am sick and this sickness is causing unbelievable stress on a precious little 7 year old girl and many other people that are involved in my life because I smoked cigarettes..
Have a good life and breathe well.
We are saddened to report that "Mick" joined our Lord on January 20, 2000. Mick was co-owner and Vice President of our group.
Hi All, my name is Jim Watson
IF YOU SMOKE STOP
IF YOU DO NOT SMOKE DON'T START
I was one of the dummies that did hard drugs. IT WAS KILLING ME.
I was drinking a case of beer a day
IT WAS KILLING ME.
I still smoke cannot stop.
IT IS KILLING ME.
I went cold turkey off of drugs and beer no trouble.
Cigarettes are killing me but I cannot go cold turkey they will not let me.
We are sad to report that we lost Jim Watson to our Lord on March 23, 2000
Hi, my name is Twanna Holmes. I am 47 years young, and I have emphysema.
I have a wonderful husband and two beautiful children. When I was 16 years
old, I started smoking. I was soooo cool! Well hindsight is 20/20 looking
back I see how stupid I was. I don't worry so much about what I have done
to myself, but what I have done to my family. Emphysema is not an individual
thing; it affects your entire family. Instead of telling the symptoms of
emphysema, I would like to share with you some of the things emphysema
has forced me to change. The first thing that I realized I could no longer
do was go on our annual ski trip up to Monarch, Colo. I could not tolerate
the altitude change. My kids really missed this, this happened when I was
41 years old. We live in Texas, we have five lakes within 15 minutes of
our home, every summer we would live on the lake with our boat skiing and
having a great time. Guess what? About three years ago it got to where
I could not tolerate the heat and humidity, so I can't go anymore. Going
to my daughters sports events, was one of the loves of my life. This past
year I did manage to go to her events, it was not an easy task. My hubby
would drop me off at the gate or the door to the gym, then he would park
the car. I couldn't get a good seat, for climbing stairs is very hard,
so we would sit on the bottom bleacher and have to put up with everyone
walking in front of us. Bummer!! At her softball games I would watch from
the car, us lungers can\'t be around the dirt and dust without getting
really short of breath. But she knew I was there, I darn near wore my horn
out on my car. My daughter graduated High School in May. They always have
graduation at our football stadium after they graduate all the parents
go down on the field to congratulate the class. It took me a very long
time to make my way to the field, I would walk a little, then have to rest,
but it was one of those things I had decided I was going to do or die trying.
I finally made it, when I found my daughter she was crying, she thought
I wasn't able to make it; we both hugged and cried for the longest time,
it was a milestone. The most recent change we have to make is leaving our
home of 24 years. It's a beautiful place on the side of a hill in the beautiful
hill country. Our home has 19 stairs to get from my car to the front door,
I am a prisoner in my own home. Stairs are one of the worse things for
lungers. These are just a few of the things that I at 16 didn't think about
or worry about. I was invincible and I could defy the warnings of cigarette
smoking. Boy was I wrong!! It happened to me and it can happen to you.
Be smart you, hold your future in your hands.
My name is Carol and I'm a 64 year old mother of 4 grown children and
grandmother of 7 ranging in age from 20 down to 2. I started to smoke
cigarettes at age 13, sneaking around so my parents wouldn't find out,
until at age 53 I had a heart attack. My doctors told me “if you
want to live, you have to quit smoking”. And I did quit....
I spent 10 days in the hospital and never had another cigarette after that. It wasn't easy but I was determined “to kick the habit” because I did want to live.
But even then I was short of breath; I can't really remember when it started. I do remember when my youngest child went to school, I went back to work and was having shortness of breath then, at around age 38.
The years came and went and I continued to smoke heavily until the fateful day of my heart attack. My family and I used to go camping, we loved to take long walks and hikes, participated in all my kids activities, work out in the yard and garden, dance with my husband and I just plain enjoyed life.
Now for the last 4 years, at age 60, I've been hooked up to my liquid oxygen tank, 24 hours a day, 7 days a week...... I had to leave my job which I truly enjoyed. I'm not able to do any of the things I used to do. I have to have someone clean my house, help me go to the super market, take care of my lawn, or just about anything that requires any energy. I can't even baby sit for my youngest grandchild.
It takes much energy to breath and it takes all I have even with my
oxygen EMPHYSEMA is a sneaky, progressive disease. You go along “huffing
and puffing” for years and years, but eventually it will do you in one
way or another. Think about it the next time you “light up”.
You are slowly killing yourself.
This is a story about my good buddy, Phil. We first met back in
1956. It was the time of Rock and Roll, fast cars, drag racing and don't
forget the girls. Singers like Buddy Holly, Elvis, Frankie Avalon,
etc. were topping the charts.
Back to Phil and I again; he was with me through high school as well as graduation back in 1958. We went every where together. We were the best of pals. He was at my wedding back in 1962 on Christmas Eve as well as the births of my daughter and my son. What a pal!!
He was even there for my children's Baptism.
He was also there when my 3 grandchildren were born. He wasn't there for the birth of my last grandson in Aug. 1996. It still amazes me that he wasn't there.
Where ever I worked he tagged along. Phil didn't have to work, his parents were rich. Phil was just out for the good times. When my family and I moved out of state, he went along. We were inseparable.
We were together until 1996 when something weird happened. After 40 years, would you believe, my pal betrayed me. Would you believe, because of Phil, I received the death sentence to be carried out by lethal emphysema.
Have you guessed by now who Phil is?
He is none other then Phillip Morris, you know, the makers of Marlboro, Merit, etc.
Please, I beg you, don't wind up with a friend like Phil, or should I say an evil enemy like Phil.
Please remember that cigarettes not only destroy your life but it also destroys the lives of your loved ones and friends.
So think long and hard before picking up that first cigarette and if you do smoke, give it some real serious thought about quitting; Pronto!
I hope this story will somehow influence you to not smoke or to quit if you do smoke.
With emphysema, you won't be a pretty sight, you'll just be a "sight", and I'll vouch for that.
Frank Moyer in Pa.
We are sorry to report that we lost Frank to our Lord on 2/2/02
I am 55 years old, actually will be 56 in October. I started smoking when I was 16 (that was 1958). It was so cool to smoke. I did it to fit in with the crowd of friends that I had at the time. I actually hated it but still smoked because I wanted to "fit in." I was so shy back then. Since I thought I was ugly and too skinny I wanted desperately to feel like part of the crowd. Since I was tall and awkward for my age. Tomboy by nature, the exact opposite of my pretty well built sister who was very popular. I went to an all girls Catholic High School in Brooklyn, NY.
I feel old because the effects of wanting to be part of the crowd have
stated with be even though the friends and school no long exist.
The friends moved on, the school closed down. However the Asthma,
Chronic Bronchitis and Emphysema have stayed with me. A bitter pill
to swallow. I can no longer; dance, ride roller coasters, walk for
miles, carry a package of groceries from the car, and most of all I cannot
ride a bike with my grand children. I will
be grateful to just be alive when they marry. That is one of the things that keeps me going. I spent 3 weeks with them this summer. I hope this will not be the last time I see them.
So if you are still smoking, think of me when you puff that cigarette. My favorite saying use to be "Oh well, you have to die from something" or "I'll never get sick, not everyone gets emphysema"
I finally stopped smoking in 1993 on my grand daughters 6th Birthday. It was the best present I could give her.
This disease is very bad. When I cough in the grocery store people move away like I have a contagious disease. They look at me with pity when I ride around on a scooter. I take a lot of medication, use a BI-pap machine to sleep at night and use a nebulizer every 3 hours so that I can breathe.
If my story helps just one person not smoke or just one person stop smoking I will feel really blessed. Don't do it for me, do it for yourself. Your future will be brighter and your home a much cleaner place to live in.
Barbara in San Diego California
My name is Kathy and I would like to tell you a story about a young girl of about 14 who thought “gee, everyone else is smoking”, looks like a fun thing to do, and it must be all right, after all her mom smoked, oh! and her dad smoked too, but he died when he was only 45 years old. They said it was the stroke that killed him, but this young girl believed it was drinking and smoking that did it. Do you think that gave her incentive enough not to smoke? If you said “yes” you were wrong, because I was that young girl, and instead of running away from a smoking gun, I just lit my first one, took that first drag, choked and turned green and kept right on puffing until I got it right, just like all the “cool people” were doing.
Well, now that I am much older, and I hope much wiser, it comes a little
too late for me.......you see I have Emphysema and Asthma and I know there
is NO cure for this disease. I knew something was wrong when I was
around 45 years old when I had a very rough time keeping up with friends
going through the airport in Newark, NJ . They were walking “normal” and
I was having to “run” to keep up, and was so out of breath I even scared
them. Even that did not stop me from lighting up a cig the first
chance I got. I figured “awe, what the heck, I am getting older,
body is slowing down, no problem”. Well, I went from that to not
being able to play badminton, not being able to walk far distances, not
being able to do
a lot of things I once did. Still, I said “must be getting old”. Now how much more should it take someone to figure out that everything everyone was saying was right.......smoking will KILL you?
Well, it took me until I was 49 and was told that I had a disease that was incurable........that scared the heck out of me. That was when I finally had sense enough to quit.
I had my 3 children when I was young, figuring I would be young enough to have one heck of a good life when they were grown and gone because I would still be young enough to enjoy life..........yeah! right!!!! My heart and soul may be young enough, but the toll that cigarette smoking has taken on my body has made me into an “old” lady who is lucky sometimes to even go and walk around the mall let alone enjoy a fulfilling life.
Then there are my 7 grandbabies, there are times when I look at them and I cry inside because I don't know what the good Lord has in store for me. Will He let me stay around long enough to see them grown? If he does, will one of them be having to help take care of me? Will I ever see any of them finish high school? College? Get married? None of us have the answers for what tomorrow may bring, but I am begging anyone who may read this; Please do not do what I did. Say NO to that first cigarette. Think of all the testimonials you have read. Don't think it won't happen to you. Do you really want to take that chance and play Russian Roulette with your life? I think not.
We are happy to report that Kathy had a left lung transplant on 1/24/01 and is doing OK.
When I was sixteen years old, I started to emulate my idol - the lady
across the street. She and her husband both smoked and I thought
it was the classiest thing to do.
That was 48 years ago. Even after I lost my husband to a smoking related illness in 1985, I kept on smoking - telling myself that I would quit "tomorrow." You know what they say about tomorrow?
I must admit, now that my period of denial is over, I knew many years ago that I was heading for trouble. Blamed my shortness of breath, my fatigue, my lack of energy and endurance on stress. Would not admit that I had a serious illness. After all, the doctors never said that I did and they should know. I was able to work two jobs, keep house, do all the chores that most women have to do. Yard work, you name it. I used to paint, wallpaper, laid a slate floor - refinished furniture - took wood shop classes and made my own furniture - have a kiln and made ceramics - even made my own molds. Had a craft business and took part in shows, sewed, knitted, crocheted, took up oil painting and became a computer junkie.
Now, if I have the energy to brush my teeth or wash my face, I consider
the day off to a successful start. After a couple of bouts of bronchitis
this past fall, my family doctor finally sent me to a pulmonary specialist.
Actually, it was the nurse-practitioner who did that. The lung doctor
diagnosed me with 'significant emphysema.' Prior to that, I had several
doctors always tell me that my "lungs sounded good,' and a specialist in
asthma and allergy tell me that if my peak flow meter readings went too
low, he'd put me in the hospital. . Not one of them until this last one,
mentioned the Big "E". It was always bronchial asthma, asthmatic
bronchitis, or a uri. Shortly after my diagnosis in November, 1997,
I ended up in the hospital with a mega-bronchitis and stayed for two weeks.
Haven't smoked since. I was smoke-free for my 64th birthday in March.
When I was first diagnosed, I thought that my life was over. I was ashamed to let anyone know what was happening with me - wouldn't let anyone see me get winded, avoided going upstairs - which was getting harder to do at work. I had to sit in the car for about 5 - sometimes 10 minutes and try and catch my breath before I could start the engine.
Please don't smoke... it may be cool now, but wait until later...
I started smoking at the age of 12, thought it was really cool. I started with Lucky Strike Cigarettes, smoked Kools, Pall Mall, Benson & Hedges Gold, and ended up with Marlboro Lights 100... delicious. I used to smoke with my oxygen. Use oxygen, take the hose out of my nose, and take a cigarette break; used to find myself talking on the telephone, automatically lighting up, and then realize I had the oxygen on! Amazed that I didn't blow myself up! Used to lie to doctors, say I had stopped smoking, not realizing they could smell it.
In 1989, I nearly died from a collapsed lung and resultant Hemiphilus Pneumonia. And each time I was in the hospital, I had to stop smoking. I always came home with another infection but despite that, could hardly wait to get to my cigarettes! On the way home from the hospital, I would open the window wide, take a deep breath, and inhale deeply on my cigarette.
In 1996, after a year of residing in VA Beach, where I had moved to from New York, I became quite ill. I spent 6 days in Intensive Care for both lung and cardiac problems. The doctors told me if I continued to smoke, I would die! Well, VA Beach was quite pretty, I could either continue smoking and die here, or give it up and take my chances on Life. To help me out, everyone stopped smoking in my house. I was amazed at how clean my home became.
I buried my cigarettes and cried in grief for them. I
said the Serenity Prayer over and over. I quit cold turkey and pretended
I had never smoked. I ate a lot, drank a lot of water, took deep breaths,
and day by day, the craving went away, until finally, I no longer had strong
urges to smoke.
Oh yes, now, it is 2 years and 4 months (I QUIT ON AUGUST 24, 1996 AT 12:30
PM ON THE WAY TO THE EMERGENCY ROOM. IT WAS A SATURDAY)... I do sometimes
get a craving for cigarettes. On rare occasions, I actually think, well,
maybe just one... then I realize what I am thinking, say my prayer for
the dead cigarettes in my life, cry, and then... look up at my rainbow
and see the sky, clearly, for no smoke is there to dull my eyes... I hope
that if you are reading this and thinking about giving up smoking, you
will. It may be hard, especially cold turkey, but you will certainly benefit,
your mind will become clearer, and even if you do still suffer from COPD,
the effects of your disease will be easier to cope with WITHOUT CIGARETTES...
The other night I watched "Trauma In The ER", on The Learning Channel. One of the episodes stuck in my mind specifically. It was about an elderly gentleman brought in with chest pains and suffering from severe Emphysema. My wife told me, of the three times that I have been taken to the emergency room, this looks shockingly familiar to her.
As they worked over him trying to revive him and getting him to breathe, they finally succeeded, only later to have him relapse. After much trying and working on him by several of the emergency room staff, the old gentleman finally died.
Let me tell you, my eyes were glued to the tube. If this is not a wake up call to all you out there still smoking, I don't know what would be. It sure brought home memories of when I regained consciousness in the ER. I was resuscitated twice this last time, which was approximately a year ago now. It was very scary to watch them work on that man, knowing that could be me. The only difference, I survived, he did not........Just something else to be thankful for and to think about.
While I quit smoking 4½ years ago, this and my work with chemicals has put me into a position where I am on oxygen constantly, through an opening cut in my neck called a Transtracheal. I use a wheelchair to get around from place to place. While I can't be sure, had I never smoked a cigarette, I may not be where I am now.
Please, for the sake of yourself and your loved ones, do not smoke.
Gil In Colorado
Gil passed away on 4/9/01
If you are under the age of 21, and reading this page, you're already
smarter than I, and I'm so proud of you, for two reasons. A) You
must be thinking of quitting, or trying to. B) I was 21 when I started smoking.
I started for all the same reasons that most of us do, to look cool. We all want to be accepted, and smoking, (in the sixties) gave us the image of being tough, and very "with it".
I suppose it was in the early seventies, we started hearing that smoking may be harmful to you health. By then I was married, and had two young children. I totally ignored the beginning warnings against cigarettes.
In fact I knew of two people who had died of Lung Cancer. One had never smoked, and the other had quit 5 yrs previous to her death. To me, that was all the ammunition I needed. "See, it's a lie that smoking is harmful to your health." I would say to anyone who would dare to question my continued smoking habit.
Then in my thirty's, I began coughing a lot, getting out of breath easily, and upon waking in the morning, I would bring up disgusting phlegm. But I still smoked, convinced that what I was experiencing was merely a cold. "Nothing to worry about"
I was now smoking 2 1/2 packs a day. Is any of this beginning to sound familiar?
The coughing got steadily worse, a lot of friends were now "quitting", but all I saw was lots of them putting on a lot of weight as a result. I never admitted it to anyone else, but my vanity was so huge that I chose to cough almost constantly, rather than stop smoking. Then, when I was 39, I had pneumonia, was told by my Dr. to quit smoking. I ignored him too.
Two yrs. later I had a small stroke, again I was told to quit smoking. By now I had tried cutting down on the smoking. Of course it didn't help. My husband was also a smoker, so I had told him, I'm not going to be able to quit, unless you stop smoking also. Fine, he said. Three days later, I was sneaking cigarettes, while my husband never went back to smoking. Then I was rushed to the hospital in respiratory failure, still I smoked. When the Dr. had questioned me about my smoking, I proudly told him I was on the road to quitting, I was using a patch. He then looked at me suspiciously, and asked,
"Are you smoking while using the pack?" "Oh no," I stated confidently," I take the patch off when I have a cigarette." Go ahead laugh, it is funny, but also very stupid.
Because of my stubbornness, I didn't quit smoking until I was in the hospital again. five ago. The Dr. now told me I had Asthma, and Emphysema.
That did it for me. It took hearing the word "Emphysema" to scare me enough to want to quit. I have never had another cigarette since that day. Unfortunately, the story doesn't end there. Because I would not listen to anyone, believing I was invincible, what's left of my lungs, makes each day a struggle, while I rue the day I first picked up a cigarette. Don't be
as stupid as I was, quit now before you start feeling the effects. You say now, "I feel fine, why should I quit? I know a lot of people who are old, and still smoking." But what you don't know is, are they really feeling well?
Are you willing to gamble with your life, to find out if what I'm saying is true? Ask yourself that.
This is Cristy from TN. I'm wondering if I could get some advise.
I am 25 years old, I used to smoke cigarettes, but not anymore. Two
years ago, my left lung collapsed and they had to put in a chest tube and
found out that I have emphysema. Now I'm recovering from another
bout. In February, my right lung collapsed, they put in a chest tube
and put me in the
hospital, three days later, my left lung collapsed again and they put in another chest tube, two days later, they decided that I needed surgery on my left lung. When they went in they discovered that emphysema had ate up my upper lobe of my left lung. They had to remove that part of my lung. I then developed pneumonia in both lungs. I still have to have surgery on my
right lung. And my doctor has discovered that I have a floating rib.
I just feel like I'm not a whole person anymore, if that makes sense. I have a two year old daughter that I love dearly, But I have such a hard time with her. I just want to pick her up and hold her. And the sad thing is that I hurt to much. my husband can sit her on my lap or she can climb up, but I can't pick her up.
This all has happened because I was too stupid to stop smoking until now. I quit smoking during the time that I was in the hospital. I didn't want to smoke because my doctor told me that I was lucky cigarettes didn't kill me. I just want to shout to everyone , stop smoking while you can! If not you will lose everything, your family, friends and most of all, your life.
I just feel like I should go talk to people about quitting smoking, but I worry that they will think I'm crazy. Maybe if students knew this, they would stop.
Please give me your feedback, Thank you all.
Cristy from TN
I played a deadly game and I lost. It is similar to Russian Roulette,
except that in Russian Roulette if you lose, you die immediately. In the
game that I played, you die a long agonizing death. You slowly smother.
And not only do you die in this gruesome manner, but all the people that you love and care about, get to watch you die. And they even have to take care of you while you die. You get to see your husband or wife, your parents and your children look at you with such sadness and you feel like you are slipping away from them.
You die a little each day. However, there are times when you hasten
it by catching a common cold, which quickly turns into pneumonia and you
get to go to the hospital. In that case, you may speed up your
death by several months or even a year or two. You might get to spend
some time attached to the ventilator; a life support that does your breathing
As you die, your body may swell up from the medication and you will probably get Cataracts in your eyes, blurring your vision until surgery corrects it. Also, your bones become brittle and you can break a bone even without falling. Your skin will age like something in a science fiction movie....The doctors call it Onion Skin. You may have to leave your home that you love because the altitude is too high for your disease. The disease is Emphysema and it is caused by smoking.
I remember when I first started smoking. Sitting on a beach and practicing with my girlfriend. We had a red package of Pall Malls and we smoked them and coughed our heads off. I thought, "How could anyone like to smoke?" We were sixteen years old. But I had a crush on a senior and all the seniors smoked. It was so cool. And all the sexy movie stars smoked! I really thought that somehow the cigarettes would make me look older and sophisticated. Well. I was right! It was not immediate, but smoking does make you look older. Old and wrinkled, before your time.
My husband and I are at the age where we should be planning that return
trip to Paris and Rome. But I can no longer travel.
We have had to change our standard of living because my illness has been so expensive. I could not attend my son's graduation because I could not tolerate the altitude. My illness has affected every member of our family. It has been eight long years since I got my "bullet" of information: my "diagnosis". I know my two sons would like to write a segment too. They are very angry at those cigarettes that have taken my life away from me and now is taking me away from them. They both have asthma and allergies and I wonder how much the second hand smoke damaged them directly.
I can tell you that there was never one cigarette that I ever smoked that was worth the price that we have paid.
WARNING: DON'T SMOKE!!!
Smoking may cause you to have several hospital stays
Smoking may cause you to miss the joys of life --
This disease called emphysema
For emphysema there is no cure;
Tobacco companies should be made to pay
I feel we all know what emphysema is or at least the effects it has on us as individuals. Though. it may be hard, we in most cases have to take responsibility for the contributing factor as to why we have the disease. SMOKING!
Yes, the stupid act of putting a 120mm or less piece of wrapped up substance called tobacco into our mouth; some with cotton filters on one end others just the tobacco. After getting it between our lips we then are stupid enough to strike a match or lighter to set fire to the opposite end and pull in the smoke through the slender stick, inhaling the tars and gases into its most vulnerable organ called the lung.
Yes, emphysema is real. The doctors tell us it is irreversible and if one continues to smoke the disease will progress into the ultimate end called death.
I know. I've been there and done that. It took me two years to stop smoking after being diagnosed with emphysema. Why did it take so long? First of all it was the addictive product called nicotine and other synthetic additives rolled up in that slender stick called a cigarette. When first diagnosed; I was still getting around pretty good. I could puff on my albuterol a couple of times a day and still feel good. Wishing I could stop smoking all the time.
As time goes on my hospital visits are more frequent. Still puffing
on albuterol and cigarettes my lungs are deteriorating faster than I want
to accept the fact. But I still can't put those cigarettes down. Still
being able to do things but getting slower about it; something has to be done.
What took me 15 minutes to do started taking 30 then 45 then an hour. Taking a shower was such a struggle and it was my favorite thing to do as I jumped out of bed in the morning. Shave, Shower and Smoke with coffee. Man, that was life. Well, I put the smokes down in Oct. 1996 then tried to smoke some more in 1997, just 1 or 2 a day. Thank God, I finally Cold Turkey quit Dec. 1997.
My life now is just existing at 47 years old. Oh! I enjoy my family and friends. I just can't do what I use to do, which makes me angry with my self for I allowed a product to control me and I not being able to control it. I also abhor what the Tobacco Industry has done with such indignation I can't find the words to express it.
I don't want anybody's sympathy. I don't want revenge. I do want to say I had a part in helping find funding for research in finding a cure for this debilitating disease called emphysema. That is why I support EFFORTS in the work they have started.
My Spirits are UP! I may not be able to do much except hunt and peck on this keyboard but as long as I know it is productive, my life doesn't seem so insignificant.
WITH GOD ALL THINGS ARE POSSIBLE!!!!!!!!!!!!!! Please do not smoke!!
My Thought for the Day.
God Bless All,
Bobby Hughes TN
We are happy to report that the first week of August 2000, Bobby received a Double Lung Transplant and is doing very well!
Mary Jane Somosky
This is a story about my mom, and emphysema. It is also a tool I am using to try to heal myself, and hopefully teach just one person about the devastating effects of making the choice to smoke.
My mom was sick for several years with emphysema. At what they called "end-stage" mom was on the nebulizer 4xday, and was on 2% oxygen 24 hours/day.
Then they diagnosed her with non-small cell lung cancer in January (squamous cell). Things were bad right from the diagnosis, her emphysema would make this a double-edged sword…and the fight of her life. She was 73. She was on treatment plan consisting of radiation & chemo. She was scheduled for 7 weeks of radiation in a row. Along with that, she had 1 chemo treatment (3 days in one week, once a month - which was supposed to be 6 treatments total, or 6 months). She seemed to come thru the first chemo very exhausted, but not really any side effects. She did dehydrate some, but I had a company come into my dad's house and I was trained to give her IV, which she had for 4 days after the first round of chemo. Also, to keep your cells fighting back, I gave her daily injections of neupogen for 7 days. My dad and I were her sole caretakers at home.
The second chemo, during the last 2 weeks of radiation was not so good. Though her tumor (2-1/2cm too) had shrunk 90 percent; her body had taken a beating. After the second chemo; She needed 6+ days of IV, and 2 weeks worth of neupogen shots. She would not eat, and was extremely depressed. Her breathing seemed to get worse (though the tumor had shrunk, and you wouldn't have thought so).
For 10 days after the second chemo was finished, my dad and I did everything we could possibly do to get her to eat. She just wouldn't and then after a few days..she couldn't. Anything we put into her with persuasion (jello, soup, liquid nutrition, etc.) would come back up within the hour. The emphysema was taking full swing at this point. She was in such a weakened state, we put the face mask attachment onto the nebulizer because she couldn't even hold it.
On a Saturday, which was 9-10 days after the 2nd chemo, she spiked a fever just a half hour after I had taken her off IV and came home. (luckily I lived 10 minutes away) Her heart rate was extremely rapid. I called my dad to check on things after I had left, and he told me the ambulance was on its way because her heart rate was out of control. She was stabilized in the ambulance on the way to the hospital, but I had a terribly sick feeling in the pit of my stomach…from my dad's voice, to my ears; this would be her last ride.
To make a long story short (or not so short, I'm sorry) when they finished with all sorts of tests, it was determined that mom had a blood infection called septicemia, which can occur when the body's immune system is pushed to the limit. This was due to the end stage of her emphysema, and the cancer. While trying to treat that, she was diagnosed thru more blood work to have MRSA, which is another blood infection, which is a very resistant staff infection, again due to her taxed immune system. Both of these blood infections are very hard, if not impossible to cure, in her compromised state of health.
At this point, she was given whole blood and white cell transfusions...and a gastric tube was put into her stomach...nothing was staying down. It was at this point, that the doctors told us that nothing was working, that the body was starting to shut down due to her compromised immune system.
The end result was that her breathing got much worse trying to fight; and there was no turning around at that point. They say also that the cancer had also started to spread thru the body because of nothing left to fight.
On Friday, April 23rd, 1999 I asked the doctors if there was anything we could do to ease her suffering trying to breathe. My father was in denial; mom had come out unscathed from numerous "near-death" situations with her emphysema before. They told us that they could give her morphine for pain, but that one of two things might happen. She was already hallucinating from lack of oxygen, the blood infections and the body slowing down. That might get worse, the doctor said. Or else, she may just get comfortable enough into a highly-sedated state, and eventually the rest of the body would shut down, and she would die. We had time to spend with her, for our benefit, because she really wasn't there anymore. The morphine was increased during the evening, and she passed away quietly 3am right after midnite, on April 24th. We had been there all day. I lay next to her for 6 hours that nite, watching her breathing so hard. My brother had come down, and he and my husband convinced me to come home and rest. We had gotten my exhausted father home earlier in the evening. That was at 11pm. The nurse promised me to call when things got close..but because her heart was still beating strong at that point, he never imagined, nor did we; that we didn't have time to get back. The hospital was also very close (10 minutes). When we got the call at 2:30. The nurse seemed alarmed that things were happening much faster than they anticipated at that point.
We never did make it back before she died..missed by 2 minutes. We were devastated. But I think that was mom's final gift to us, and I'll leave it at that.
I would only tell you that my mother left this world putting up a "good fight", a fight that probably never would have been won. BUT IF SHE HAD QUIT SMOKING, or never had started smoking…maybe she would have had a better shot at a longer life.
This disease attacks different people in different ways… My hope is that by sharing my story with you; it will reach even one person who will not have to suffer what my mom did. and have a family go what we went through, trying to save her life…QUIT SMOKING…I AM ASHAMED (FOR MY MOTHER'S MEMORY)…THAT I HAVE NOT FOUND THE STRENGTH TO DO IT AS YET, BUT I AM NOT GIVING UP… MY LIFE DEPENDS ON THAT~
EFFORTS has helped me a great deal. As caregiver, I found very warm and wonderful people, fighting for their lives, and still finding the time to help others along the way. That is what I am trying to do; and I thank you for listening.
My name is Gary Anderson and I suffer from emphysema.
I have just retired from my position as a University Professor and Administrator.
Too intelligent to smoke? Obviously not. Age, sex, economic status, profession, and other factors do not appear to have any relationship to one's becoming a smoker or not.
I started smoking when I was eighteen, even though I was an athlete. "Everyone smokes" was the concept, so I joined the group. I smoked for almost forty years, with a total of three packages a day being the standard when I was entered into a hospital with congestive heart failure and pneumonia. At that time, I was told I had emphysema and must quit smoking. I did for two weeks, and then, knowing that this was an affliction for other people and wouldn't be a problem for me, I began to smoke again.
One year later I had to return to the hospital. I could not breathe without assistance of oxygen that flowed directly into my nose through a tube attachment. I still have that hose in my nose. I can not walk without effort, and even then must have a hand carried cylinder of oxygen with a hose attached which is inserted in my nose. At my home, we have a large machine which has a long hose attached to it so that I may walk around the house. This continues for twenty-four hours each day.
My wife and I had planned to travel when I retired, but now that is sharply curtailed because of the problems of obtaining and using oxygen cylinders. Also, I never really feel good like I did.
This is a major problem for me, but it is minor compared to my real problem---my youngest daughter smokes. "Everybody does" and "Daddy does, so it must be all right," was her thought. She still smokes. This affliction that I have will never happen to her! It does happen, and it will happen, unless she quits. Please, don't smoke.
Gary W Anderson EdD
We regret to advise that Gary passed on to our Lord on July 12th, 2001
I started smoking as a teenager. There was a war on and we thought we'd look less like jail bait to the handsome-in-uniform young men we wanted to attract. It also reduced the chest (lung? muscle?) pain I had from my asthma.
I quit several times through my 30s and 40s. My excuse for taking it
up again each time was some crisis. Once it was the sudden death of my
brother, but I suspect most of them were far less real.
In my late 40s, after 30 years of it, the woman I was then living with and I decided we would quit for good. She had some beginning emphysema; I thought I was in great health but didn't want a habit to control my life.
I tapered off by setting time limits: to begin, I had to wait 15 minutes from stubbing out one cigarette to lighting the next. I gradually increased the time so that I was down to one a day at the end of a month. I used some crutches such as a more ritualistic cooking/eating pattern and not allowing myself to do anything else while I was smoking. I was also in a good situation where there were people around me who were willing to put up with my irritability and my demanding uninterrupted time to concentrate on my cigarettes. That whole procedure apparently eliminated the physical withdrawal symptoms, since I never again had the headaches and distractibility that characterized my tapering off period.
So - the day I was down to one cigarette my friends treated me to a session with a hypnotherapist. I can't remember now if it was one session in two parts or two sessions.
Whichever, he spent a considerable time talking to me about what I liked - food, people, recreation, scenery, activities, etc., etc. Then he had me go into a light trance - that totally relaxed, spacey, floating kind of space that meditation also achieves. Then he led me through everything I might be doing in daily life and how good it all was as a nonsmoker. It sounds somewhat silly, but it was closely matched to how I wanted to live and, of course, I was very suggestible at that point. I believe that his focus on the positive - never mentioning any of the ills of smoking - was key. I'd known and been told repeatedly how bad smoking was for 30 years. All that ever did was arouse my defensiveness and denial. This seemed to give me motivation and a sense of doing it myself because I wanted to.
I walked home feeling that the whole world was gorgeous. I guess it was a pretty day. I certainly thought it was. The high lasted for days and I kept it going when it flagged by recreating the hypnotic/meditative space.
I never had another cigarette, and that's 23 years. Of course after 19 years I was diagnosed with emphysema and in between there were a lot of other crises and changes. I'd think about smoking sometimes, especially when I smelled fresh smoke, but I began to have reactions - coughing and dizziness and other discomforts - around smoke soon after I stopped. I developed alternative activities where I could - other things to play with to keep my hands busy, other things to chew on. And I went on using the meditation patterns for positive reinforcement.
For what it's worth to others, it worked for me.
Polly Taylor, San Francisco
Elisabeth Lis Marie Baumann
I just celebrated my 35th birthday two days ago. Today I'm quitting smoking. Tomorrow I am going to the hospital for further diagnostic tests on my lungs. I was told a month ago that I have COPD/Emphysema when I was x-rayed due to chest pains. They still don't know what caused the pains, but I'm grateful that I had them, because I probably would never have found out I have emphysema until much, much later.
I'm sorry I ever started smoking back in school, when I was thirteen, when my best friend Mary offered me a drag of her Marlboro cigarette. I remember thinking that I would not get hooked. I remember thinking about my mother, and all the times I'd pleaded with her to quit smoking, and there I was, starting up the awful habit myself. I was sure it was something I'd outgrow, something I wouldn't keep doing once I was out of school. I was sure that the threat of getting lung cancer and emphysema was years and years away, and that I had plenty of time to quit. I was positive that switching to a lighter brand would keep me safe. I promised myself that when the price of a pack of cigarettes went up over one dollar, I would stop. Well, now I'm paying over $2.50 for a pack, even AFTER I found out I was sick with a lung disease. Now I've got one cigarette left and I keep refusing to smoke it because then there won't be any left.
Please, if you don't smoke – don't start. And if you smoke, no matter
what age you are, please realize that emphysema and lung cancer CAN HAPPEN
TO YOU. Please quit smoking. I wish I'd never started.
My name is Michelle, and I am a mother and wife, and have three young
sons. Matthew is twelve and half, Marc is eleven, and Luke is eight years old.
I started smoking at the age of my youngest son, eight years old. My father smoked, my older sister smoked, and I thought I was cool. Not so!
Sadly my father would die of eight years later of Emphysema. I watched my father struggle and suffer with this disease. I also saw the battle of the addiction to cigarette smoking for over 52 years, and the battle to live (the addiction won, we lost)! My father started smoking at the age of seven, and died at the young age of 59. Leaving my disabled mother, and me at sixteen.
Also two older sisters, and one brother.
It never registered in my brain that I would soon be diagnosed with emphysema at the age of 32 years old.
Being sixteen when my father died I had the attitude that I would never get sick from smoking! That was for old people, and the warnings were jut to scare people. By the time I was seventeen I started my diagnosis of (COPD-Chronic Obstructive Pulmonary Disorder) with the diagnosis of Chronic Bronchitis & adult asthma. I was still in denial that these problems were due to smoking. I was seventeen, and wasn't going to die until I was old, and never because of smoking!
But I am sad to say my young children are going through what I did with my father. The begging "Mom, please stop smoking!" I love my sons more than anything in this world! So, why is it that I can't break the addiction of smoking? I have been on oxygen for 3 years now.
I can't schedule appointments to far in advance because I never know when I am going to come down with a lung infection and end up in the hospital. In the last year in a half I have been hospitalized at least twenty times.
This makes it difficult to be a mother while your in the hospital!
What has hurt me the most is to see the post's on Katlyn's page where my son at the age of seven in a half wrote about his mother being sick and on oxygen (and people making fun of me).
Matthew who is twelve wrote a story that he say's isn't true (but I think it's a way for him to write his feeling and fears without admitting that he has them). The story starts by saying that this story isn't true, but...
Bottom line of his story was he came home and found his mother dead from Emphysema!
I beg you before you light the first cigarette, you are may contemplate smoking that you realize that you are starting to end you life with that first puff! Because it can happen to you, and 1-3 kids will die prematurely because of cigarette smoking, and I fear as we enter the new millennium the odds will change to more like 1-2 will die early in life.
SO PLEASE STOP! THINK! Is smoking worth dying? A death that doesn't come swiftly or without cost, this includes medical bills, loss of ability to do many things that once came easy to you, and even hurting other people with your second hand smoke!
SO PLEASE DON'T TAKE THAT FIRST PUFF! IT WILL KILL YOU, NOT FAST, BUT
SLOW AND PAINFUL DEATH. Please don't become a statistic! Stand up and say "No, Smoking isn't cool, it kills!"
Thanks for letting this very old thirty-five year old share her journey of this horrible disease of Emphysema.
Forced by Sickness to Quit
My story is really no different than anyone else's. I smoked two packs of cigarettes a day for thirty years. I'm 52 years young now.
One night about ten years ago I noticed I was a little short of breath. After it occurred several times I bought one of those over-the-counter asthma inhalers. A few months went by and the problem began to occur in the morning as well. The problem would come and go. This went on for about two years when all of a sudden the bottom dropped out. I got bronchitis along with a bad shortness of breath episode.
After the sickness was gone the shortness of breath stayed. I went to the doctor, who sent me to a Pulmonologist and that's right, you guessed it; I was told that I had COPD, which is Chronic Obstructive Pulmonary Disease. I was told to stop smoking, and you know that went over like a lead balloon.... I did not quit.
A couple of years went by and all of a sudden I had trouble walking up stairs, then it got to where I couldn't go upstairs with groceries. Then it got to where I couldn't go upstairs at all! We moved into a house so the stairs wouldn't be an issue.
A couple more years went by and suddenly I seemed to be needing to use my medicines in the middle of the night. To make a long story a little shorter, when I got to the point that I couldn't walk from my car into my place of employment and get to my desk, I knew it was time to throw in the towel. I finally went on disability. I now cannot walk twenty-five feet without the help of an oxygen line in my nose.
What did it take for this hard headed ole goat to finally understand that smoking was not a good thing? It took a two-month stay in the hospital with a very serious episode of pneumonia. I got some kind of a secondary infection, one of my lungs collapsed, my blood pressure began to drop, and I was put on a ventilator with concern that I might not be able to be weaned off of it.
I scared my children to death. I have a twenty-seven year old son who is my hero, my knight in shinning armor who has stayed by my side from the day I got this for the sole purpose of being around if I needed help. I also have a twelve year-old daughter that must be an angel in disguise because she has given me the will to fight to stay alive. I am so fortunate.
Hi, my name is Sue Heggen and I am a smokeaholic. After approximately
38 years of smoking, I was finally able to quit. However, I know I would
never be able to smoke even just one or I might be hooked again. In 1958,
when I was 16 years old, a couple of my girlfriends and I would get together
during the summer and spend the days playing cards. They were smoking and
so, wanting to fit in, I decided I could learn how to do it too. Well,
learn I did. Even though there were several days I was really sick after
smoking all afternoon, my Taurus the Bull personality kept me hanging in
there and eventually I could smoke with the best of them. For several years
I was a heavy smoker and with a terrible smoker's cough (probably had chronic
bronchitis all that time). In my late 40's I started noticing I had trouble
climbing stairs and walking very far without getting short of breath. I
became a master at keeping other people from discovering the fact that
I was having trouble breathing. My Father had emphysema and died from a
stroke in 1985. Then in 1992, my sister, whom I loved dearly, died at age
51 of COPD (emphysema). Watching them struggle to breathe and yet continue
to smoke, even while using oxygen, was difficult. However, did I quit smoking
then? No, I tried everything--smoking cessation classes, hypnosis, acupuncture,
nicorette gum, and finally the NicoDerm patches. After several unsuccessful
tries I was almost convinced I could not do it. However, when I was finally
diagnosed with moderate to severe emphysema, I was no longer in a stressful
job and so I started telling myself that I had no choice but to quit and
asking myself, "Do you want to smoke or breathe." Well, with the help of
the NicoDerm patches, hard cinnamon candy, and cinnamon gum, I was able
to quit. Now I thoroughly enjoy the freedom I have. It's amazing how much
cigarettes can control a person's life; they dictate your life style, where
you go, what you do, etc. The real answer to the cigarette problem is for
no one to ever start smoking. However, if you do smoke, stop now before it's too late.
(Written by his wife, Lyn)
My name is Lyn Motter and my husband, Ed, has emphysema, caused by smoking.
As you have read in the other testimonials on these pages, one significant item stands out in each one, "The Struggle to Breathe." This "Struggle to Breathe" will eventually cost them their life. But first they must suffer, possibly for years.
Ed started smoking when he was in the Army. Gradually over the years,
breathing started getting difficult. He'd go to the doctor where he was
told "You may have a touch of Emphysema, just quit smoking and you'll be
Well, Ed finally quit smoking on June 8, 1998. He smoked his last cigarette on his way to the hospital.
He spent 23 days in the hospital of which he remembers very little. I remember all too well, as it if was yesterday. The doctor had called ahead for a room. When we got there, he was taken directly to his room and within minutes doctors, nurses and respiratory people were there. They did arterial blood gases on him to check his oxygen level. They put a needle directly into an artery, usually near your wrist, and draw blood (very painful). Ed was in respiratory failure and was immediately sent to ICU. I was told to expect the worse. On top of his lungs failing, he had developed another complication of Emphysema, Cor Pulmonale (right sided heart failure). During his 23 days in the hospital, he was in and out of ICU. Every time they thought they had him stabilized and moved him to a regular room, within hours he would start to fail again and they'd move him back to ICU. Finally the doctors said that they had done all that they could do. On July 1, 1998, Ed was brought home in an ambulance to "die."
Much to everyone's surprise, a little over a year later, Ed is still alive.
He is in a hospital bed in our living room. He gets out of bed only to go to the bedside commode with my help. He is on 5 liters of oxygen and breathing treatments every four hours. He is catheterized because he cannot urinate on his own. He takes pills to help him breathe, pills to make his bowels work, pills to calm him down, pills to slow his heart rate, pills to help him sleep, pills to stop bladder spasms caused by the catheter, pills to hopefully keep him from getting an infection and pills for his stomach because of the side effects of all the other pills. His life consists of laying in bed and watching TV.
We have a beautiful 14 year old daughter. She's active in school activities, choir, sports and skating. Ed can't even do the one thing he enjoys the most, watch his daughter. Ed probably won't be around to watch her graduate from high school, college, or walk his little girl down the aisle when she gets married. That will probably be left for his son to do, who also has blessed us with two wonderful grandchildren that Ed won't be able to see grow up.
Ed's brother also died from Emphysema caused by smoking. If you don't smoke
- don't start. If you smoke - do everything you can to quit. Smoking causes Emphysema and it CAN happen to you. Younger and younger people are developing Emphysema and other lung disorders. It is no longer an "old peoples" disease.
IT IS TERMINAL, THERE IS NO CURE, IT WILL COST YOU YOUR LIFE.
Have a good life and breathe well,
I wrote the above testimonial in October 1999 and it is now February 2000.
Sadly, I must mention that I lost my husband Ed in his fight to breathe on January 7, 2000.
Charles Bozett (Learn from observation)
My father's coughing would waken us boys at five in
the morning while he had coffee and a cigarette before setting off to work.
He retired on disability in 1960, suffering from severe emphysema.
He would live 2 more years on oxygen and succumb as the result of the emphysema
and an enlarged heart. He was 66 years old. He stopped smoking only when
he was put on oxygen and could no longer smoke and still breathe.
My brother and I started smoking at age 21 (1951) for the usual reason given in those times: everybody did it. "A nasty habit," "coffin nails,""bad for you." These admonitions were brushed aside as we joined our friends in smoking. In the back of my mind was a decision to stop smoking at the very first sign of physical distress. My father's cough-filled life and early, ugly death had made me very determined never to go through what he did!
My brother did not join me in this vow. He developed emphysema in his early fifties, was on Prednisone and oxygen, and died at age 59. I know he tried to stop smoking because we talked long distance every week during his last year or so and he said he was just under too much pressure to quit. I am angry to this day that he did not learn the lesson that Dad, through bad example, had set. I miss him.
I stopped smoking in 1971 after twenty years of fairly heavy use.
One day, I was on my bicycle at the end of a workday on my way home and pedaling up an incline when I felt a "tightness" in my chest. That was it! The physical warning I had been waiting for. It was July 20, 1971. I stopped that very day for "one day at a time." (This was not the first time I had tried to quit. I remember deciding to give up smoking in 1964 after the government's warning was issued. I tried unsuccessfully several times after that, even though I had not had any physical problems -- no coughing or shortness of breath.)
This would seem to be a success story, and, in a way, I suppose it is. From the age of 41 to the age of 60, I was active and healthy.
However, in 1990, I contracted a bronchial infection that made me feel sicker than I can ever remember being, and this infection caused the damage to my lungs which was the start, I believe, of my emphysema.
I lived at the time on the third floor of a building with an English basement -- "a high third" -- and of course, no elevators. I had lived there since 1973 and experienced only normal sob after climbing the stairs. (My friends always complained about those stairs.) After the bronchial episode, I had a hard time with the stairs and realized I would have to find a building with an elevator because I didn't want to become a prisoner in my condo as I grew older.
The last ten years have shown some progression of my disease. I think smoking cessation is very effective though and that possibly I would not have emphysema today if it didn't "run in the family". I have recently found out that two of my female cousins have COPD and that seems to confirm the possibility of a genetic component to this disease.
Charles at 70 in Chicago
My allowance was five cents a day when I was in Kindergarten. I would spend one cent on a gum ball and one cent per
cigarette at the school store. All the big kids did. By the time I was in seventh
grade I was taking change from the "house money" and buying packs of cigarettes.
In ninth grade I was allowed to go to a good Prep School, smoking was an expulsion offense.
Loved the school but continued to smoke. By this time all the real 'cool' girls were smoking.
Waving wet wash clothes around the rooms when we knew are rooms were going to be checked.
Next on to college, again smoking was an expulsion if caught, same routine.
Slim, glamorous constant beaus, smoking at college dances off campus, on campus, sneaking. Movies: great Garbo, Diedrick, Hayworth, Bergman etc. all smoking, did we want to use them as roll models, oh yes. Married, nursing watching Captain Kangaroo,, .holding my babies in one arm and a cigarette in the other. The bliss of that extra cigarette for midnight feeding. Couldn't talk on the phone with out one, yes, my friends would wait while I got a cigarette. Every table with an ash tray and they were stunning. A sterling one always for a wedding gifts. Did I know anybody that didn't smoke ? I really can't remember. Finally a lot of bronchial problems. In the doctor's office as we discussed tests we would both light up , the advice always was, better if you would stop smoking. By this time in a theatre my children always knew where I was from my cough, it's dark you know ,but they never lost Mom. Finally walking pneumonia, a new doctor and some new tests (8,000 dollars worth)
this time it was E, with the best wishes for living another two years.
It's been six years, I used the three steps of the patch, stopped social drinking, any friend I had that used perfume or smoked was asked not to be around me. Lost a few friends. It's been five years, I now am so sexy, so sophisticated, I have false teeth, yes I flossed and saw the dentist three times a year, Now they are saying that smoking causes gum disease thus finally working into tooth loss. Neat it saves more periodonture, that used to be very painful as I tried to save my teeth.
Pursed lip breathing came naturally to me. Luckily cars were always handy, so I really didn't have to walk far. Tennis , and skiing and scuba all were left behind. Now I'm back in the states, I exercise three hours a day, use O2 at night , my medicines are unreal . Having a bad time replacing my wardrobe because of a 10 month belly. Oh yes, I'm really glamorous. If the kids only knew how awesome you become !!
Now how proud you are that you can still walk to the car. How excited you become that you can walk on a tread mill for 15 minutes at a speed of
1.5Yes, smoking is only for the very cool.. So cool that you worry about death..
I was diagnosed dx by a GP around 1992 after having a Pulmonary Function Test in his office. He told me I had better stop smoking. Right!!! I was only 44 and I believed I was still bullet proof. I had only been smoking since I was 14. . Said I had chronic bronchitis. I was also having anxiety attacks and would get SOB regularly. He put me on albuterol and xanax 5mg. WELL! I walked out of his office and lit a cig on the way to the truck. Got to the drug store and coughed up a bunch of crud and hit the inhaler and WOW I could really tell the difference.
Felt so good, I just had to light up to celebrate!
This went on for a about a year while I was in a dead end job and a lot of stress so I NEEDED the cigs to stay calm.
I really convinced myself of that.
The next step was at the VA when I no longer had insurance.
Was again tested and prescribed Albuterol, Ipratropium bromide and
vanceril along with the xanax and another anxiety med which I don't remember the name.
Was warned again! If you don't quit smokin you'll be pushin round a bottle of O2. HA!!
Get back! WELL! Hit the inhalers and felt better so why not, LIGHT up some more.
I just hadn't got the picture yet.
I finally had an incident that got my attention. I was in the shower and just finishing up when I realized I had my hand on the wall supporting myself because I could not breath. I said that is enough, how dumb can you be!!! I quit cold turkey that morning. This was in 1994. Stayed off the cigs for 6 months with very few problems. Then we moved to Phoenix from OKC and on the trip out I was driving by myself and stopped in Gallup N.M. to stay the night and to this day don't know why, but I bought a pack of cigs and was right back in the maddening circle again. For the next year I would be driving down the road and start a coughing attack and almost pass out and cough a bunch of stuff and get over it and light up.
Well, to end this happy tale. I moved back to Oklahoma City then to Tulsa in the next 2 years then on to Dallas in 1997. Still doin the inhalers and drugs for anxiety and tried a couple of times to quit with the patch and gum but both of those just made me want to smoke.
Finally in Oct of 98 I got pneumonia which was a yearly thing for me but this time ended up in the hospital for 10 days and came home on 4.0 lpm O2 and qualified for a lung transplant in March of 99.
For at least 4 of my last years of smoking I was always saying I was going to quit but I just didn't want to. My wake up call to get serious was too late.
For those of you still smoking, I do understand, but for God's sake please do whatever you need to do to quit. I sit here now typing on my computer the story of my smoking history on 3.5 lpm of O2 with a hose stuck in my nose so I can breath without passing out because I have ruined my lungs. I have no one to blame except myself. I made a choice and it was a bad one and the price to pay is just too high. I will have to have a transplant soon. My diagnosis is without a lung transplant I have 3 1/2 years left to be around.
Dear people, I am not ready to leave this world that soon. I have so much to do.
Please don't make the same mistakes. Learn from those of us that have already made them and let us pay the price. There is not a reason in the world for all of us to pay the same price for the same mistakes.
There are programs to help you quit smoking. Give it a try. It can only help.
I was lucky, I had to cold turkey again when I went on O2 in October 98 and have not smoked since. Besides if I do, they will remove me from the transplant list and that dear friends will never happen. No more cigs for this boy.
God Bless and help you in your endeavors to stop smoking and If I can help, let me know.
keep on keepin' on Tony in Dallas Tony has now had his lung transplant and is doing very well!
June 2, 2001
Hi folks: Here is a follow up since I wrote the letter about my smoking career some time back.
On February 9th, 2001 I received a single lung transplant (left side) I had been on the waiting list for right at two years and praying everyday for a donor organ to come available for me. This was a hard thing to do as there was always the thought in my mind since I found out I needed a transplant that someone was going to die for me to live. I am still not sure I have come to terms with that. I just thank God that I was blessed with a family who decided to let their loved one be an organ donor. I am able to write this because of them.
My life has changed so drastically since the transplant that it is hard to describe the emotions I have been through. My transplant was not one of those "walk in the park" transplants. I did have some set backs in ICU. I spent 27 days there due to complications that were unforeseen. A reprofusion of the new lung and a rejection in the first 3 days caused me to be re intubated for
12 days. I spent 34 days in the hospital in all. Now things are going great. New lung is functioning well but I am about 30 days behind recovery due to the reprofusion. My docs have already released me to go back to work as of May 1st even though I am still in pulmonary rehab.
For those of you who are still smoking. My new lung has given me new life and a lot more years to enjoy my family and friends but please remember even though I have been blessed with this extension of life, my life will still be shortened because of my smoking. Eventually, the smoking I did will kill me in one way or the other. If not from the lung rejecting it will be more than likely from one of my other organs failing due to the medications I am on baring some accident that would cause my death.
The longest living lung transplant patient just recently died and she had a double lung transplant 15 years ago. If I get 15 more years from my new lung I will be 68 years old…NO that's 68 years young. My family has a good longivety record. All the males have been in their upper 80's or lower 90's before their deaths. I will probably not get there because of cigarettes. I will always wonder what good I could have done or wonders I might have seen if I had those extra 12 to 20 years. Well, maybe by then the medical field will have come up with some new ways to keep this ole body functioning on one lung or maybe even another new one.
Bottom line: SMOKING IS NOT WORTH THE TRIP YOU ARE GOING TO TAKE. THAT ROAD ENDS IN A DEAD END!!!!! Keep on keepin' on Tony in Dallas
About six weeks before my twelfth birthday I took up the grown-up habit of smoking.
After all, my Father smoked, the neighbor smoked.
It was on the TV, and it was so sophisticated.
I always had a problem with weight and one of my neighbors said he and his wife had lost 20 pounds, just by smoking! If you have been called 'Tubby" or "Crisco Kid," you take any chance to try to get rid of the problem. I did lose some weight when I started, and in a short while my body was addicted to nicotine. When you are 12, you think you are bullet proof, period. I was expelled from school in the seventh grade for having cigarettes in my shirt pocket. My Father was really mad. He said if he caught me with cigarettes again, I would really catch it!
I continued to smoke, but managed to keep the secret from him. At least he never said anything else about it. You see, HE smoked too! Even when had a skin cancer removed from his lower lip, I didn't make the connection with smoking until later years.
I quit school and joined the Army, still bulletproof. I carried nothing from home to basic at Ft. Jackson, SC but my Bermuda shorts, a T-shirt, and shower sandals -- and cigarettes. I froze my tail off. The Army didn't permit sickness. The only reason you wanted to go to the doctor was to keep from working, they said. They had a name for that, Dereliction of Duty. You could go to jail for less!
I carried the cold from Columbia to Ft. Sill, Okla. One morning I passed out in ranks and was taken to the hospital with pneumonia. That's when most of my lung problems started. I continued to smoke, and they even gave us cigarettes in our "C" rations (food).
We got 4 smokes, three times a day. Smokes on base were $1.90 per carton. Through the years I probably averaged 2 packs a day.
About the time I became 40, I started noticing my breath was really beginning to suffer. I blamed it at first on altitude. I mean, I am bulletproof, right? Slowly I became aware that all wasn't well, I was "over the hill" and things were not all they seemed. I drove over the road from coast to coast almost continuously from the time I separated from the service until December of 1991. I was on the way home, sick. Christmas was less than a week away when I passed out at the wheel! Some one real Special was driving because when I came to, I was parked straight and safely on the shoulder of the road. Well, you don't have to hit me over the head! I took the truck to the depot and cleaned my stuff out.
I was in the hospital for a week the first time and still was sick for months. I continued to smoke, until February 28, 1999. The doctors at the VA hospital have cussed me, pleaded with me -- and my family also -- and I just could not throw those cigarettes away.
I tried at least 6 times to quit. Talked with every doctor I saw, and they all said the same thing:
"You are addicted to the MOST HAZARDOUS DRUG KNOWN TO MAN!"
Well, I think they were right, I would tremble, shake, go completely out of control for a cigarette. The family put up with some real terrible times because of my ADDICTION over the years. I think they were glad to see the chimney leave.
I have been diagnosed with Chronic Obstructive Pulmonary Disease (COPD), Congestive Heart Failure, Diabetes, Degenerative Bone Disease, Hypertension, Kidney Problems, Liver Damage. The last two are from the hypertension damage, I think. The diabetes is effecting my nerves in my feet and legs mostly but there are times when my hands are numb. too. You see, I'm 58 years old! Much to soon for this old body to wear out. The Doctors tell me there is a VERY great chance of blindness, loss of limbs, and I don't want to hear about it. I should have a long life left, but I don't think it is at all possible.
Believe it or not, it's a big deal walking 15 steps when you have LUNG CAPACITY that is
25% of normal. I think the lack of Oxygen has effected my brain function, also, because the things I used to do in my head I have to write down now.
With a lung capacity now at 25% of normal, many things I used to enjoy doing are totally out of the question! Hunting and fishing, for example. Would you want to drag an Oxygen bottle every where you go? What if you run out? If I were to catch a fish, I couldn't reel it in; there's not enough air.
It is my most fervent hope that when this is read by who ever if they are contemplating becoming smokers, they DO NOT! It isn't worth it. YOU ARE PAYING OTHER PEOPLE FOR THE MATERIALS TO KILL YOURSELF! SMOKING IS VERY SNEAKY.
YOU DO NOT REALIZE THE DAMAGE UNTIL IT'S TOO LATE. THE DAMAGE IS NOT REVERSIBLE. PLEASE, DO NOT SMOKE. Not for me but FOR YOURSELF AND LOVED ONES.
Joseph M. White
When I was old enough to know better, I thought I would be "cool" and smoke cigarettes. The first pack I can remember was a pack of "Wings" This was about 54 years ago. At that time no one thought much about the health risk. All the men and boys smoked. That must make it right or so we thought! Wrong!
Do you know that: (1) every cigarette you smoked took 18 minutes off you life? (2) The average 25 year-old-pack-a-day smoker will die 8 years younger than his or her non-smoking peer will? (3) The daily death toll from tobacco related illness is equal to 3 jumbo jets crashing? There are many other statistics regarding the danger in smoking. Continued smoking accelerates the ongoing decline in lung function, increases susceptibility to respiratory infections, and contributes significantly to the development of other morbid diseases in both younger and older populations. I now come near the end of my life. I am unable to do any of the things that I enjoy. I am tied at the end of this 50-ft. oxygen tube just to enable me to breathe. My quality of life is "O" (Nothing) Can I get well?
Sorry to tell you there are no cures for emphysema. When I told my doctor that had been treating me, that I wasn't happy that I wasn't getting better he said," Do you have a living will?" I do now! My pulmonologist said my SOB wouldn't kill me but my heart would. I have what they call cor pulmonale. A right heart failure caused by smoking.
You may not be religious or even believe in God but the Bible has some truth in some passages that address our condition. COPD.
In 1st Corinthians 6:12 Paul says" I am allowed to do all things but all things are not good for me to do. I must not do those things that will make me a slave." I didn't listen to those that said I shouldn't smoke. Cigarettes made me a slave. I now pay for the damage I caused to my body. I suppose I could say the Devil made me do it! And maybe he did but in the end I'm responsible for my actions.
1st Corinthians 6:19-20 " You should know that your body is a temple for the Holy Spirit. The Holy Spirit is in you. You have received the Holy Spirit from God. You do not own yourself. You were bought by God for a price so honor God with your bodies.
Verse 12: I am allowed to do all things but all things are not good for me to do. I must not do those things that will make me a slave.
My advice to anyone reading this is if you smoke---Stop! I did and it was
in 1993 that I laid down the cigarettes and haven't smoked since. It is the
only way to go. Cold turkey! If I can be of any help call on me.
Joseph M. White
Everyone in our college group smoked 40 years ago. We were so cool. "I really like to smoke," or "I can quit any time I want to" we would tell ourselves. Besides, all of us smoked. We weren't interested in being different, we all wanted to be the same. Forty years later, we are pretty much the same. All of us have lung damage, none of us can breathe easy.
Some of us have died. Instead of having golden years for retirement, we have painful years of ill health. Expensive years, wasted years - all because we were so cool.
Quit? It wasn't easy for me to quit. After all, I really didn't want to, it was so much easier to keep on smoking. After all, I was still OK. The big E is what happens to other people, isn't it? I didn't really want to quit, or did I? But, in the 80's it wasn't cool to smoke anymore. Thirty years had gone by since I started with that first cigarette. I stocked up on patches and gum. I spent thousands of dollars attempting to stop smoking.
Acupuncture, hypnosis, everything but the Shick Stop Smoking Program which was going to be next. I finally quit without any fanfare - I was so deathly ill with the flu, I couldn't get out of bed for cigarettes or anything else.
Many times I thought I had taken my last breath. It was more important to live and to breathe again than to light up another cigarette. A month without the weed became many months without it, then years.
5 years have come and gone. I now have the big E and nothing can change it.
In order for me to live, I have to wait for someone else to die - I need a lung transplant; my lungs are so far gone now. There is nothing cool about that.
My name is Doug and I am 34 years old and diagnosed with COPD. It's kinda ironic that I would ever be diagnosed with such a beast. My parents smoked heavily when I was a kid and it annoyed me to no end. I would go to school and kids would tell me I smelled like smoke because I was around theirs all the time.
I detested the smoking and the smell. My mom also smoked when she was pregnant with me so you could kinda say I was a smoker before I ever even entered the world.
I would be in the car with them and they would refuse to roll a window down even a crack so I'd be in this smoke filled chamber until we finally stopped somewhere.
For no other excuse than to appear "cool" I smoked my first cigarette when I was 16. When I started I started with a vengeance! About 2 packs a day...was hooked right from the start. I did quit occasionally when I was sick with a bad cold or something but would always start up again. I continued to smoke and would try many times unsuccessfully to stop. Longest was about 1 month or so but would always use a bad day as an excuse to pick up another cigarette and I'd rip the patch off. In reality...I was always a heavy smoker.
About 2 years ago I developed a really annoying cough that would usually but not always spring up at night. Just figured it was "smoker's cough" and would just cheerfully light another cigarette...we are all invincible, right? As the Grinch says...
"Wrongo!" About a year ago my cough would be accompanied by horrible wheezing attacks. I'd wake up unable to breathe and gasping for air and the panic attacks from that just made it worse. I figured it was asthma and bought my first bottle of Primatene Mist...it just HAD to be asthma. I was too young to have emphysema...right? "Wrongo!" I finally got so sick of the coughing and gasping for air that I finally decided to seek medical attention for it. I was sure it was asthma or some allergy so I figured he'd give me some nifty little pill to get rid of it.
Boy...was I brought back down to earth real fast! I now take several inhalers a day just to have some resemblance of a normal life but those don't even last for long and I continue to cough and wheeze my way through life. Prednisone helps a lot but that drug has so many side effects and turns me into a living unbearable beast. Not to mention that I get about 2 hours of sleep while on it.
I did finally quit smoking 5 weeks ago and though it's not a pleasant battle to beat addiction to cigarettes I have family and friends who continue to stand behind me and keep me busy or cheer me up when I'm having one of my cravings. To Todd, Kristen, Holly, Tracey, Suzanne and Lynn...to name a few. I cannot thank them enough for their undying support to keep me healthy and away from even thinking of smoking. I know I can fight the cravings and fight this disease. I don't give up easily. And with their help I have remained off of them.
To anyone out there in Cyberland that is reading this. Please...do yourself and your family and loved ones a favor. Stop smoking! It does kill! It might seem cool to do but in reality it's the stupidest thing you can do. If I can get one person to stop smoking before it's too late then I feel a lot better. You can do it and your lungs and loved ones will thank you too. It takes a good attitude and a good support group for encouragement.
Susan From New Jersey
At 15 I wanted to fit in so very badly with the kids who hung out at the luncheonette over cokes, chips, and cigarettes. The cokes and chips were no problem, so I set out to smoke. I remember feeling dizzy with those first few cigarettes, but I persisted and soon became used to that feeling. My grandmother was planning a sweet 16 party for me. She found out that I was smoking a few weeks before the party. She told me "NO party unless you quit". Well, I pretended to quit, but was already too hooked to be able to do it.
When I was 19 I contracted Chron's disease, one of the first symptoms I had before it was diagnosed was a crippling arthritis in my hip, making it virtually impossible to put any weight on it. Grandma took me off to the local GP who told me that the pain in my leg was from smoking! And since we lived right across the river from NY city, he said that the air pollution in our area was equal to 2 packs a day and with my additional pack I was smoking 3 packs a day. So I tried to quit. I would burst into tears with alarming regularity, not a good thing for my job, or my psyche. I started taking Valium and I think my quit lasted perhaps a week when I weighed the valium against the cigarettes, and in my head it was no contest. So I started in again.
I smoked thru my 20's when I was 32 I had a rare virus that put me into ICU for 5 months, so my lungs got a rest. Except for pneumonia twice and being on a respirator!
But as soon as I started to mend and was moved to a regular room, one of the nurses dropped me trying to get me out of bed. I sat on the floor and asked for my purse where I found a pack of cigarettes and lit up. (That was when you could smoke in your hospital room). So I continued smoking thru my 30's and 40's each winter I would get a cold that would go right to my chest and turn into bronchitis. And I had a cough almost constantly. The word emphysema was mentioned by my doctor, but I had no idea what he meant, I didn't know what it was and he never told me. Then one night I took my cigarettes and threw them across the room and stopped cold turkey. I lasted for 9 months during which time I was frantically stuffing food into my mouth and gained 40 pounds! I also met my husband to be who smoked. So it was easy to talk myself back into smoking again. When I started having 'breathing problems' (no one ever mentioned copd or explained it to me!) I used the patch and quit for a year, which was very hard since my husband was still smoking and the cigarettes were all around. So I went back to the old habit.
Then one night I had a horrible incident happen. My husband had a bonfire in front of the house. I stayed inside and went to bed, but had put the a/c on in the bedroom. The next morning I couldn't stand up, could barely stay awake. Well off to the ER where I spent 11 days just laying in bed trying to get the smoke out of my lungs. That was my quit date, I haven't had a cigarette since then.
I have also gone from being able to live a normal life to being on oxygen round the clock, having to take medicines that have really bad side effects, such as weight gain, hair loss, tremors. I can no longer just go out to the store without thinking of how far the parking is from the store, and if the store has an electronic cart that I can use when I get there. I have dealt with the breakup of my marriage due to my illness as my x husband couldn't deal with the stress of my being sick! I now live in a small apartment having moved from a house that I lived in for the past 22 years. There have been a lot of changes in my life from this illness. I'm very lucky to have a wonderful support system in my daugter and son-in-law and my sister. They are all so very special and caring.
Also within the past year I have found a wonderful pulmonary doctor who works with me to manage this COPD. But I have learned everything I know about it from the supportive, caring people on the Efforts list. And yes, I sometimes wish that I had stayed quit when I first tried, but that expends too much energy that I need to live my daily life.
One year, eight months, three weeks, four days, 3 hours, 57 minutes and 27 seconds. 25446 cigarettes not smoked, saving $4,135.34. Life saved: 12 weeks, 4 days, 8 hours, 30 minutes.
Susan & The Birdies
Mary Anne Cole
I'm one of the lucky ones. I don't have terminal respiratory disease --- yet.
I haven't had a cigarette since April 12, 1983. But if I choose to light up and smoke again, I'm certain my health would suffer through emphysema or lung cancer or any one of a number of illnesses which result directly from smoking.
I'm still the time bomb waiting to go off, even if I never smoke again.
My dear husband, Jim, died on September 16, 1999 from emphysema. His illness may have been caused in part by his years of working in construction or the fact that there was lung disease present in his family. But it's no doubt that his smoking was a primary cause, even though he stopped smoking about 20 years before he died.
In 1996, my uncle died from bladder cancer. The doctor told our family that his cancer came directly from the poisons in the cigarettes he smoked. He had stopped smoking 43 years before his death.
My first husband has just come through his fourth cancer surgery --- two for bladder cancer and two for esophageal cancer. It's a miracle that he is still alive. He stopped smoking about ten years ago. His doctor said his cancers resulted directly from smoking.
It's never too early to stop. Better yet, don't start.
I began smoking in the '50's. I had a new boyfriend who visited our shore town every weekend and took me to dances where he and all of his friends took breaks to have their cigarettes. I was 13 and I wanted to be like them. I spent a whole summer learning how to inhale --- throwing up after
every cigarette (what a date!). This should have told me that the cigarettes were poisoning my body.
The thinking at the time, promoted by the tobacco industry was "smoking is a good thing," and smokers bought into this line. There were ads on TV and in magazines showing doctors (or actors-playing-doctors) who proclaimed that "X brand was good for your throat" or "brand Y helped you relax."
My smoking continued---a pack or two a day---through high school and college. Somewhere in all of this my uncle had told me that if you stopped smoking after only 15 years, you had no chance of becoming ill from cigarettes. I don't know where this myth began. I believed it, but I was so heavily addicted that the 15-year milestone came and went, as did 20
years and 25 years, and still I continued to smoke.
I began to be sick with allergies, asthma, and at one point, pneumonia---not serious enough to be hospitalized which left me free to smoke even though the doctor, my husband and even my little children were very angry with me when I did. My husband hid my cigarettes, but I struggled out of bed after
he left for work each day and managed to find them. I was so desperate that my cigarettes meant more to me than my health, which was clearly being compromised by my smoking.
One afternoon I ended up in the emergency room, unable to breath. I couldn't even walk across the room. I was told that our local weather was in a "temperature inversion," keeping the air pollution nearer the ground.
Later I had the pulmonary function test and was told by the hospital doctor that I had emphysema. I was so frightened, that is until my doctor told me that it was only the weather situation, and that I had "a little asthma" and I really ought to cut back on the cigarettes. He gave me an inhaler and sent me home.
About this time, I began to look for ways to stop. Cold turkey didn't work. Hiding the cigarettes didn't stop me for a minute. All the "smoking schedules" meant nothing. I got a cold the day I was to go to the Cancer Society class, so I told myself that it wouldn't work anyway. I shelled out a lot of money for Smokenders---this worked for about three weeks, if you
don't count the drags from my husband's cigarettes. I was beginning to feel the despair of not being able to quit.
One thought finally surfaced in all of this---I had to want to "not smoke" more than I wanted to smoke.
Browsing in the bookstore one day, I came across a book about "how to stop smoking." I couldn't tell you today what the name of the book was. It really doesn't matter. What does matter was that I finally found something that I connected with. I was determined to follow everything the book told me to do, and to succeed.
Because I was committed to stopping, I finally did for good. That was 18 years ago. My recent lung x-ray still show signs of my smoking. I'm not exempt from the illnesses that come from smoking just because I've stopped.
I have some shortness of breath, an occasional bout of asthma, an annoying cough from post nasal drip---nothing life-threatening at this point, but I'm out there on that limb where I put myself when I lit up that first cigarette.
Clem from Florida
Don't know if you want to smoke or not, pressured by your peers to smoke,
and they all have told you it is just a lot of stories about your health and
how bad smoking is for you. Smoking can cause a lot of sickness in your life,
whether it be cancer, lung disease ,or heart problems. It isn't noticed at
first, but as you get along in age, say about 30 or 40 and it is harder to get
up that hill or over to the next street, then it gets harder to get out of
your automobile, and so many little things are getting harder to do. Well you
blame it on the fact that you are getting older, true, you are getting older
but not for long. As time goes along you realize that maybe you should have a
physical by your family Doctor. After the examination is finished and all the
test results are back the Doctor ask you into their office to explain
everything. You have Emphysema as shown by the test when you huffed and puffed
into that machine and could hardly breath for a few minutes after. The Doctor
subscribes a medication for you, so you go home thinking everything will be
alright, lo and behold a few months later another visit to the Doctor, This
time you are advised to use a nebulizer a couple times a day, that is a
machine to put additional medication directly into your lungs by breathing the
medication, this gradually gets worse and will have to use this nebulizer more
often, in the meantime you are put on additional medication from a little
puffer that is also breathed into the lungs. During this time your whole body
is getting weaker from not getting enough exercise because it's just to
exhausting to do anything physical. By this time you have been put on
supplement oxygen at night time because your body slows down when you sleep so
naturally you wake up because you can't get enough air. This goes on for
awhile and the first thing you know you are using this supplemental oxygen all
the time, can't go anywhere without it. In the meantime you have lost your job
because you just can't keep up with the demands required to keep it. Life is
looking rather dismal at this point. but don't give up maybe your Doctor will
take the trouble to get you on a waiting list for a lung transplant, who knows
some one that never smoked might get killed in an accident and you are up next
on the list, but then perhaps the accident victim never has that accident and
you are the next one to cash-in. Don't take just my word for the way this
disease affects your life, it is the fourth leading killer in the U.S. and
expecting to be even higher in just a few years. If you would like to talk
about this disease, ask any questions or get further information please
call me 1-863-439-2907 Be good to yourself and those around you. Don't smoke.
I'm 55 years old and was diagnosed with COPD Emphysema about 7 or 8 years ago. At first, it was kind of a wimpy call on my Doctor's part. I got the impression that he was not quick to make that kind of diagnoses or did not feel qualified. He referred me to a Pulmonary Specialist back then, but I didn't go. I didn't need to. I knew I had Emphysema. Heck, just walking from the car to his office got me short of breath and that was less then 100 yards. I continued to smoke, (I had always smoked about a pack a day and that didn't change much up until I finally quit), until May of 1999 when I was hospitalized because, I could not breath. I had such a bad lung infection that I was admitted and put on IV antibiotics for 8 days. I think I stayed off the cigarettes for maybe a couple of months and then lit up again. I was on and off them until October of 1999 when I was admitted to the hospital again unable to breath. Up until 1999, I had been in a hospital twice, once at birth and once when I broke my foot in a motorcycle accident. The last time I was hospitalized, my pulmonary guy said something that really got my attention, "Mike, there are worse things then dying". Coming from a Pulmonary Doctor, that is pretty heavy. I just kept imagining what he must see in his medical practice and decided I didn't want to go there any sooner than I had too. I am a recovering alcoholic and have not had a drink in over 22 years. I only mention that because I truly think it was much harder to quit smoking than it was to quit drinking.
The only suggestion I have to be successful at quitting is to make the
effort the most important thing in your life. In order to beat the cigarettes
you need only do two things; quit smoking and change your whole life.
I am 56 years old and supposedly disabled. I spend a lot of my time on the computer, working with two different support groups, emphysema/COPD and depression and anxiety, taking care of the house and yard, which is a full time job with my limitations. My wife is retired also so we have a lot of time together which I would not have had I not taken control of my illness and my life. I am living proof that this disease will almost always progress at whatever rate you want it to. I was diagnosed in 1983 and put on Theophylline at 100 mg a day. I didn't even think about it, just another pill and kept on smoking. I was in the Army at the time and getting a good exercise program so I didn't even think about it. I retired in 1985 for medical reasons but I was still going strong and ready to retire anyway, so no big deal. In 1989, I came down with a serious case of pneumonia. I was put on Albuterol and Atrovent inhalers. Still going strong but starting to slow down a little, I figured I was getting older so I still didn't get concerned and kept on smoking. I opened my own auto repair business so I could slow down a little.
In 1993, I came down with pneumonia again. This time they increased my medication and put me on a nebulizer. I was starting to have quite a bit more problem breathing and had to hire an extra mechanic in order to keep my business operating. I was not really concerned, I figured the doctors knew what they were doing so I just kept on smoking and I went along for the ride. In 1996, I had a major bout with pneumonia and lung infection. Went into ICU for ten days and had three specialists keeping me alive. I was placed on oxygen 24/7 and prednisone 10 mg for maintenance. I closed my shop, sold all my equipment, went into depression and developed an anxiety disorder.
You guessed it! I was still smoking and in March of 1998, I developed respiratory failure and died!
I was resusitated and I quit smoking. For about four months, started getting better and started feeling pretty good. I had some kind of chemical imbalance develop. The doctors couldn't find anything. I gave up and my disease took over again. I started a complete "I give up program," depending on doctors to carry the whole load and I was slowly dying. I still didn't know anything about my disease and was so depressed that I didn't care to learn. But that's when I found the a COPD Support group, and found out that there is life after death. I feel that I have stopped my progression and started to reverse it to an extent. Since March 1998, I have been in the hospital once and that was for heart trouble. I have become so convinced that this illness can be controlled that I have devoted large amounts of time and energy in relaying this message to others.
We are all going to die as that is the natural progression of things, but I believe that my experiences show that the disease progression pretty much depends on the individual. It just depends a lot on the individual and how we handle our illness. Ignorance took about ten years off my life. You need not do the same.
Cecil Montgomery~ February 2001
My story begins when I was 5 years old when I came down with whooping cough.
From that point on, I had problems with bronchitis every winter. Back then, no one really connected the fact of whooping cough and bronchitis. That continued for many years until at the tender age of 12, I started smoking. I had no idea at that age what to expect on down the road. I had never heard of of emphysema or COPD. That was also before warnings on packs, and there were still commercials on TV about cigarettes. Biggest mistake I ever made!!! I had no idea how much damage I was doing to my lungs.
I continued to get sick every winter with bronchitis for many years just going to the doctor and him telling me I had bronchitis and to take these antibiotics and cough syrup and I'd be fine. When I wasn't taking that, I was using my trusty Primitene Mist more and more times. I figured it was asthma that was bothering me. In the mean time, my brother-in-law was diagnosed with emphysema. I still had no clue that was what was wrong with me. I continued to smoke and continued to get bronchitis every winter.
Finally, in 1994, my breathing started getting pretty bad so I decided to go to my brother-in-law's doctor to see if he could give me something to help me breath. He did chest xays and a spirometry and told me I was in the early stages of emphysema. I was only 39 years old. How could this be? So I stayed in the denial for quite awhile. I knew that emphysema was a slow progressing disease so I figured I could probably smoke another couple of years without doing too much more damage. Boy was I wrong!! I even cut down to maybe 4 or 5 a day thinking that I was actually smoking since I was only smoking that many a day. I was only kidding myself.
I joined an online, global support/activist group called EFFORTS, http://www.emphysema.net , in 1999 or 2000 and I think it was with the help of this group that I am where I am at today. I learned how important exercise was and also which foods to avoid that can cause shortness of breath to get worse. I learned all about Pulmonary Functions Tests and what they mean. I learned many, many other things that are just too numerous to name. I can never thank this group of people enough. They have been a lifesaver to me. They also told me I had to quit smoking. But smoking, as anyone who has ever smoked for any length of time, will tell you is a very addicting disease. If I had listened I wouldn't be where I am today.
I smoked until on night in April (actually it was also Friday the 13th) of 2001. I had been having a pretty bad day of breathing and of course, still smoking. I thought I'd just go to bed and that way I wouldn't have to think about it. I got in bed and couldn't stand to lie down. It just seemed I couldn't breath when I tried to lie down. So I got up and tried to do a breathing treatment with my nebulizer. About half way through, I sat up in bed and absolutely felt like I was not getting ANY air. I thought that was the day I was going to die. I called to my husband that was watching TV in the living room and tried to tell him to call 911, but when you can't breath, talking is very difficult. He didn't know what to do, so finally I said, "Call an ambulance!" By the time the EMTs arrived I was able to get a small amount of air, my oxygen levels was at 91 after I had rested a bit. Don't know what it had been before, but I'm sure it was pretty low. Well, the EMTs immediately gave me another nebulizer treatment and oxygen, and we headed for the ER. When we got there, I was given another breathing treatment, oxygen, and a steriod shot to help with the breathing. They did a chest exray and after a few hours, sent me home. That night was when I made my decision of never touching another cigarette.
I started thinking of all the money I had spent killing myself and how all that money had contributed to all those high and mighty tobacco exectives buying their fancy houses, big boats, and shiny cars.......all at the expense of people like me that had been hopelessly addicted to cigarettes. I decided right then and there that they would NEVER receive another dime of my money. They didn't care about me. All they cared about was making money.
They didn't care about all the millions of people that die from their product. If they did, they would stop putting all those poisons in their products that kill and keep people hopelessly addicted. Well, that is the last cigarette I have had. Sure, it was difficult, but I knew I had to do it.
In May of 2001, my doctor sent me for a full Pulmonary Functions Test to see how well I was doing. When I got the call from the nurse, I couldn't believe how much damage I had done. I only had 19% FEV1 which is the main measurement for lung function. I was 47 years old and I only had 19% of my lung function left!! My doctor was also surprised because I was still working and was not yet on oxygen. I knew I was exhausted after working all day but I had to idea my lungs were SO bad. My doctor suggested lung transplant. He wanted to know if I had ever considered it. When he said the word transplant, that was a big wakeup call. I always thought of transplant as something for really bad off people, not for me. But then I realized that I WAS one of those people. I went home and cried for several days and then decided that I was not ready to die yet. I called my doctor and told him I was interested in transplant and to do whatever was necessary for me to be evaluated. A very small number of people are usually approved for transplant. Most people are not. So the doctor did all the necessary paperwork to have me go to Barnes-Jewish Hospital in St. Louis for evaluation. Incidentally, if a person wants a lung transplant, they say that Barnes-Jewish is the place. I am very fortunate to live close to there.
I went to Barnes the week of Oct. 8-12, 2001, to be evaluated. They do just about every scan imaginable, a heart catherter to make sure you don't have heart problems, EKGs, PFTs and take 14 tubes of blood. After 3 days of tests, I was told that I did qualify for transplant. It is VERY expensive so they also make sure you have good insurance coverage. I did find that my FEV1 had gone up to 21%. That's not much change but at least it had not gone down any further. So now, I am waiting. I try to exercise at least 3 times a week on my treadmill, do some upper body exercises, etc. I try to stay away from sick people. That is VERY important to anyone with lung disease. It may be just a cold to them, but to you it can mean pneumonia or even death. And of couse, stay away from people that are smoking.
Well, that is my story. I try not to dwell on the past by saying "if only I
hadn't smoked" and try to think of the future. If you or someone you know
smokes, please, please stop. I affects every organ in your body. It can cause
heart disease, cancer, emphysema and all sorts of other diseases!! I can't
stress this enough, IF YOU ARE SMOKING, STOP!!!
I had the great good fortune this weekend to attend the first ever
National US COPD Coalition Conference in Arlington, Va.
A little background, my name is Linda Watson, I am 53 years old and have a 14 year-old son still at home. Almost three years ago I had the top third of my lungs removed at Columbia Presbyterian Hospital in NYC. They were taking up way too much space. I have emphysema and am on the executive board of EFFORTS, an online patient advocacy/support group that is called the Emphysema Foundation For Our Right To Survive www.emphysema.net . I was diagnosed in 1989 by an excellent local family doctor who told me to go to a pulmonologist because at the age of 38 I had the lungs of I believe it was, a 120 year old person. I was pregnant at the time and in my great wisdom decided that I didn't want to have x-rays and things then. I would do it later. So I put it off, saw other doctors who asked me if anyone had ever told me I had asthma and what did I take? I said no, none ever said that but admitted to surviving on Primatene mist. I guess since no one before them had told me I had asthma they decided not to tell me either because no further information on the subject was offered (at least it wasn't emphysema) Nor did I ask, after all I had Primatene Mist. By 1997 I was unable to work and finally received again, from another doctor, the diagnosis of emphysema. I stayed with this doctor for two years.. My husband used to carry me in and out of his office because I would be to weak to walk. My son was now nine and I was trying to do Boy Scout Camp. There was a problem with that because I had to climb up and down the mountain side on my hands and knees because I could not breathe. A girlfriend told me that my nails should not be blue, especially since there was no polish on them. I finally got the courage to ask the doctor if I could have a referral to a pulmonologist and how I would know if I needed oxygen? I had decided that being unable to walk 15 feet was not a good thing, and he replied that "I would know". Having deduced that he wasn't going to tell me if I needed oxygen I realized I had better get back to my original family doctor who at least had the good sense to tell me what I had. Unfortunately when he did diagnose me in 1989, he called it COPD and I thought well, thank God I don't have emphysema. I did go to the library at that time but the only book they had was one from 1950 and I thought boy, this is some rare disease; there are not even any books about it! Back to 1999, and my original family doctor has an appointment made for me with a pulmonologist before I can get my feet out the door.
In between doctors three and four, my husband has purchased a computer against my wishes, because it is too expensive. I had the good luck to find EFFORTS website at www.emphysema.net and realized there were people in the world who were just like me. They couldn't breathe but they knew things about their disease. All kinds of strange numbers about lung capacity and liters and strangest of all, exercise. Like me, they could not walk across the room to answer the door, but they knew all these numbers about their lungs and had had all kinds of tests and they had the same symptoms I did. This made me realize I had better change doctors fast and motivated me to get back to our good old family physician.
It is now March 1999, finally, I have a pulmonologist. Lucky for me, he is a good one. After all the testing, he comes back in with the nurse and tells me I have one to three years to live unless I get a transplant. In tears, the nurse leaves the office. We had been discussing our sons and relatives of mine that she had known. I was just sitting there. I can't imagine what is wrong with these people, how could I be so sick when I have been going to the doctor frequently and nobody said you are dying fast. It didn't really hit me until I had to tell my mother. That was the hardest thing to do.
My poor pulmonologist has to now write a book to convince the insurance company that I need a transplant. They are pretty good about it and I even get to choose between Brigham & Women's in Boston and Cleveland Clinic in Ohio. So off we go to take a zillion tests and get things moving because you can be stuck on a transplant list for a long time. By the time I am actually getting scheduled for testing , it is August of 1999. We have made one trip to Boston, which is basically informational, and it has been decided to take more tests and set up appointments which take months to arrange. My insurance company has now changed, because my husband's employer has decided to upgrade his insurance. (That foolish company is now out of business!) My doctor is not too pleased because he now has to write more books but he is pleased about the hospital, Columbia Presbyterian because he knows people there.
After another round of testing, it is decided that I might be a good candidate for LVRS, an experimental operation for people with COPD/emphysema. He has two other pulmonologists confirming this, which makes him happy because it is experimental and very unhappy because he has to write more books to convince the insurance company to pay for this procedure because even though it is the only treatment available to me and I am a good candidate, Medicare does not pay for it; therefore the insurance company does not pay for it. This causes many more books and letters and discussions between my doctor and the insurance company, and somehow he gets approval because the hospital and testing are all "in Network" and covered, it is just the surgeon's fee which remains to be negotiated.
Two days before my operation is scheduled, in June of 2000, we have a commitment from the insurance company to pay for a surgeon and all systems are go.
I am writing this because Wednesday Nov. 19th is World COPD Day and I have been unable to get so much as a ripple of attention for it in our corner of the world. Even though this disease is the fourth leading cause of death, and kills about 120,000 people a year. No one seems too interested in getting information out about it. It's also a great women's disease, it kills more women than men and even more women than breast cancer, about 70,000 a year. They can't figure out why it kills more women than men. I know why. There are women who smoke and there are women who live with men who smoke; and then there are those hormones which make it more easier for us to get the disease and harder for us to quit smoking. How hard is that to understand. Go figure. Unfortunately, no one is too terribly interested in diagnosing it, treating it or even researching it. I have a sneaking suspicion it is because it is a "tobacco related disease". The acronym that I use is T__RD and you fill in the blanks. These two T__RD diseases, COPD/emphysema and lung cancer combined, kill enough people to make them the third leading cause of death, but they are diseases that the government likes because they don't have to spend any money researching them because they are not politically correct diseases to have. In 1996, the amount of money spent on research for COPD/emphysema was about thirty million dollars, even lung cancer got about 130 million.
Heart disease and cancer ( top two leading causes of death) get
billions. I guess smoking doesn't contribute to those diseases. It is also a
handy disease for the government because we don't live long enough to use
Medicare or retire and enjoy our social security money. Best of all, the
treatment options that work for this disease are not paid for by the
government. There is finally a drug out which may even improve our lung
function, reduce the number of puffs we need to take on our inhalers from
about 16 a day to once a day , and it was even approved by the FDA last
September (2002) but there is a "labeling issue" and nobody seems to know when
it will be resolved. I see they have also denied approval for another COPD
drug just this past week, hmmmmmmmmm Of course, this drug has been in use in
other countries for many years . Then there is another treatment, pulmonary
rehab, that's another one that doesn't get paid for, only cardiac rehab is
acceptable . Pulmonary rehab has been proven by the recently ended NETT
trial, to be as effective as the operation I had (not to mention a lot less
painful). Actually it is covered in New York now, but not too many people seem
to know that either. Then there is LVRS, which has finally been okayed by CMS
(guess who that is) and will be available in January, but only at certain
centers and only for certain patients. Then there is the test that tells you
if your lungs might be a little bit off. It's called spirometry. It doesn't
cost hardly anything. Spirometers are available for between $500 and a $1000
dollars and you test lots of people with the same machine, for years. It takes
about six seconds (one exhalation) and you don't have to have any sensitive
parts smashed between heavy plates or drink that stuff until you have major
accidents from both ends. No huge machines. It is just too easy, I guess that
is why nobody does it. That test has been around for 150 years, that's what
they said down there in Washington. I have decided that what is afoot is
simply a conspiracy to breed a race of healthy smokers. You know, natural
selection. All the people with the genes who are prone to these diseases will
be killed off and only the people with the good genes will be left.
These diseases are not in the public eye much mostly because the people who have them die pretty fast and don't stick around long enough for people too notice them . No one but their families anyway. Another one I can't figure out is why, when I walk into a hospital, I always see posters from the American Cancer Society advising people to get screened for breast cancer and prostate and colon/rectal cancer. Lung cancer kills more people than all three of these combined and yet I never see a poster advising people to get screened for that! I wonder how many women that kills. I think about 360,000 people, somewhere in there. That is not an exact figure. I wonder if that one is also more women than men.
I keep trying to get some information out to the public to get screened for COPD/Emphysema but I am having a hard time. It can't be too hard. Last year they did free spirometry in grocery stores in Slovokia, of all places. I sent press releases for World COPD Day to the record last week along with all the links that have information for this disease, from the government no less but nobody seems to interested.
Anyway, I had a great time in Washington, hearing the best doctors in the world saying yes, we need to do something about this. They even invited patients to present "abstracts". Abstracts are big posters 3' by 3' with words on them in very big letters. Bigger than the biggest font on my computer, but that's not a problem, I went to Staples and got the paper enlarged so they can read them from three feet away. The poor doctors must have very bad eyes from all those books they have to write for the insurance companies. I would like to send you a copy of mine, just to prove to you that I am not making all this up. I would also like to forward to you, copies of previous letters I have sent to health writers at the record asking them why they never include this disease in their articles, if I can find them. Not even a little blurb on the calendar on November 19th saying World COPD Day " Test your lungs, know your numbers" That is something that they AARC people say. I like them a lot, almost as much as my pulmonologist.
The American Lung Association has made a great effort to increase the amount of information on their website about COPD/emphysema ( I always add the emphysema part so people know what I am talking about) so I figure that it must be okay to come out of the closest now. The NIH and WHO have combined in an effort to reduce the death toll from this disease and formed the GOLD Coalition, www.goldcopd.com . In the United States it is known as the US COPD Coalition, www.uscopdcoalition.org . Their slogan this year is Could It Be COPD? catchy huh? There were lots of smart people there from important organizations, NIH, ATS, ACCP. They all knew what I was talking about when I said COPD. I hope they invite me back next year. I had a really great time.
I started smoking at the age of 17, when my little brother used to sneak me cigarettes when we were doing homework, late at night in my room. I started trying to quit in 1989 and it took me nine years. My beloved brother Charles passed away at the age of 47 on Oct. 9th, 2001; from lung cancer and my father on Oct. 12th 2003, from the same disease.
Linda Watson, Executive Board EFFORTS LVRS Col. Pres., 6/5/2000
Single lung TX 6/7/2011 NYPH/CUMC