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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 . 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 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.

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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.


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In Coping with Life and ..
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Words can not express my pain
Sorrow can not help you
I wish I could take it away
I wish I could catch it from you
But I cant and I feel helpless
all I can do is love you
I can wipe your tears just as you did for me all the years
I can help you when you need to talk your fears
You are so special to me,
you being in my life has meant so much to me.

Carole I need you to know that whatever you need I will be here,
it is a honour to have you in my life and it is an honour to have walked partsof my
life with you
You are my blood, my friend, my aunty, and more
The strength I have learnt from you has gotten me through the toughest of times
It is what I count on to get through this and to get through my fertilitytreatments
and I owe it to you, I have watched learned and admired the strength you have

They say things like this happen to you to test you and to test your strength
and I know you will fight this you will fight until you can fight no more
and even when the fighting stops you will still be so loved. Loved so deeply.

Your mind is such a powerful place and its amazing how positive thoughts cansend even
the darkest problems in life into remission.

Be positive aunty, know that love surrounds you, know that help is on hand andknow
that even small things in life matter. Know that you have strength and yourlight is so
bright that even when bad things try to stamp it out it still flickers on.

You candle is ongoing. Your love is still flowing. Nothing can take that fromyou. ...Love Megan L