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Old 10-21-2002, 10:10 AM   #1
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Busk HB User
Unhappy 36, non-smoker, diagnosed with emphysema

I am a 36-year old who has never even TRIED a cigarette in my life. I was just diagnosed with emphysema. My lungs are working at 47% capacity. The doctor says that I have the lungs of a person who has smoked for 40 years!! He says that some catastrophic event in my life must have effected my lungs and there is nothing that he can do for me. I am scared . . . I do not know what my prognosis is . . . will I die before I am 40? . . . 50? If anyone has anything at all to share on this topic, it would be greatly appreciated.

 
Old 10-21-2002, 03:40 PM   #2
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Hi Busk,
I know how you feel, I am 48 and I was just diagnosed with emphysema also. But at least I know why...I smoked for 30 years and just quit on 9/6. I am at the moderate/severe stage. One of the best ways to live with this disease is to get as much information as possible. Has you MD refereed you to a Pulmonologist? I think that is definitely the first step. If you do an internet search on emphysema, there are lots of sites that are informative and there are also a couple of good forums devoted just to COPD (Chronic Obstructive Pulmonary Disease). Keep posting and let me know how you're doing, O.K.?
Gwen
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Old 10-21-2002, 06:14 PM   #3
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Were you taught pursed-lip breathing? It can help you exhale some of the air left behind in your lungs by generating some backpressure...

A little backstory, in emphysema the airways lose their elasticity and on exhalation tend to want to collapse upon themselves early on. This traps air behind the collapse inside your lungs, which further stretches the air sacs and decreases your lung capacity. By generating backpressure, however, you can help keep these airways open longer so that some of this air can get out and it helps hyperinflation a bit.

Take several deep breaths and when you exhale on each one, purse your lips like you're going to say the 'wh' in who. Blow out as much as you can.

I agree with the above, try and get a referral to a pulmonologist; this is a disease where you should be tracking its progress. Talk to your pulmonologist about medication available too.

I know someone else is going to mention this, but a diagnosis in a non-smoker at 36 of moderate-to-severe emphysema is rare, has he tested you for an Alpha-1 Antitrypsin deficiency? Replacement of this enzyme can help halt the damage its lack does to your lungs; but it won't reverse the effects.

I'll take a leap out here and say you won't die before you're forty, not likely even before you're fifty. You might be on home oxygen before you're fifty, but that's not really all that terrible, when you think about how it could be.

A pulmonologist will be able to advise you as to the best course of action. He'll also be able to test you for A1AD.

 
Old 10-22-2002, 10:14 AM   #4
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Thank you both for your advice. I was tested for the antitrypsin deficiency and was told that the test came back normal. I also had chest x-rays done and was told that they looked normal, but the doctor is having them read by a radiologist and I have not received those results yet. I was also told that I will have to quit my job (in a paper mill) because of the dust factor. Is disability an option? Or vocational rehabilitation? Would moving to a warmer climate help my lungs at all? Again, any advice is greatly appreciated. Bless you all who are struggling with this condition too.

 
Old 10-22-2002, 05:17 PM   #5
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How do you know your lung capacity? I was told I have some emphysema. I am 45. I smoked for over 20 years and quit last 11/6/01. I went to chest specialists and had breathing tests, xrays, etc. Where or who do you find out from your lung capacity?

 
Old 11-01-2002, 11:39 AM   #6
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the guy doing the lung testing should be happy to print out an extra copy of the report just for you as well as the one he sends to your dr.

tell him you want to keep it for your own records.

 
Old 12-20-2002, 04:07 PM   #7
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Busk,

Your condition almost sounds as if it was caused by your occupation. What does doc say?

If doc can certify that your lung disease has anything to do with your occupation..it's workers comp..either way, if your employer covers you for short term disability and you're having breathing difficulties, get thee to the benefits department and find out about your disability coverage.

Get away from that dust filled environment. Ask your doc about pulmonary rehab and meds that will help you breathe better. Good luck!

 
Old 01-22-2004, 07:44 PM   #8
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Re: 36, non-smoker, diagnosed with emphysema

Quote:
Originally Posted by lavender01
How do you know your lung capacity? I was told I have some emphysema. I am 45. I smoked for over 20 years and quit last 11/6/01. I went to chest specialists and had breathing tests, xrays, etc. Where or who do you find out from your lung capacity?

If you are seeing a chest dr (lung specialist) they should tell you what your lung capacity is. My father has emphysema, and has gone through the breathing test, then they tell him automatically what his lung capacity is-----I would say if you arent being told this answer, you either need to ask, or find a better dr.

 
Old 01-22-2004, 07:58 PM   #9
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Re: 36, non-smoker, diagnosed with emphysema

Quote:
Originally Posted by Busk
I am a 36-year old who has never even TRIED a cigarette in my life. I was just diagnosed with emphysema. My lungs are working at 47% capacity. The doctor says that I have the lungs of a person who has smoked for 40 years!! He says that some catastrophic event in my life must have effected my lungs and there is nothing that he can do for me. I am scared . . . I do not know what my prognosis is . . . will I die before I am 40? . . . 50? If anyone has anything at all to share on this topic, it would be greatly appreciated.


Amazing how cigarettes are always blamed for cancers/lung disease, and yet we hear of people getting these illnesses that have never smoked!

As far as your question, no one can really answer that. (as far as how long you will live). But here is what I can tell you. My father was a 2 + pack a day smoker for at least 30 years. He was diagnosed with emphysema/COPD in Dec '99. He was told (by the family dr) that he had only 6 months to 1 year to live. (a bit longer if he quit smoking). Well, he is still with us 3 years later--so far--and has quit smoking a couple of times for 6 months, but started back, and smokes about a pack a day, sometimes more, sometimes less. In May 2002, his lung capacity was at 30%. He just went to the dr today, and it is now 23%. I was told by the P.A. at the lung dr office that if he does not quit now---that at the most, he has 1-2 years left. Given that they specialize in this area, and given my dads obvious declining health, I agree with them and dont really question the 1-2 year theory.

My uncle had emphysema for 20 years before he passed away.

So, as you can see, it can vary. As far as you,---how did they come about the diagnosis? What problems were you experiencing? Was it by a family dr or lung dr? If you question the diagnosis, being that you are a non-smoker---why not have a second opinion---go to an actual lung specialist--not just a family dr.

 
Old 01-22-2004, 08:54 PM   #10
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Re: 36, non-smoker, diagnosed with emphysema

Alpha-1 Antitrypsin deficiency, I was just going to suggest this also. You can do a search online to learn a little more about it. And you definitely need to be under the care of a pulmonologist for this, as this is the kind of doctor you'll need to give you the best possible care.

Please take care, and let us know how you are.

 
Old 01-23-2004, 07:43 AM   #11
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Howitt44 HB User
Re: 36, non-smoker, diagnosed with emphysema

I would get a second opinion. There are other medical conditions that can affect lung function. But I'm curious, what were your symptoms that made you seek a doctor? Were you coughing, having trouble breathing? There are certain numbers on a lung function test that do indicate emphysema. Do you know what they were? You mentioned you worked in a paper mill? Do you wear a mask. I would suggest finding another job, get a second opinion, (both traditional medicine and alternative medicine), get plenty of exercise to work your lungs (if possible). Exercise does wonders for increasing lung capacity. Please keep us updated. God bless!

 
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