What does it mean to be diagnosed with emphysema?
May 15, 2012 8:48 AM   Subscribe

My father has been diagnosed with emphysema. Despite a bunch of online reading, I have no idea what this really means for him, or my mother, his lifestyle, prognosis or any of that stuff. Can you help?

As he is a lifelong smoker it's not too much of a surprise although it sounds very severe (he's 66, and his 'lung efficiency' is 26% - I'm not sure which test, specifically, he's referring to here).

My online reading doesn't give me many tools to interpret the diagnosis or the data and I would love to hear from people with first-hand experience or, in fact, any experience of the disease. As always, thanks in advance.
posted by HopStopDon'tShop to Health & Fitness (5 answers total) 5 users marked this as a favorite
I see tons of patients with emphysema in my work as an emergency department doctor. The severity of it seems to depend on a lot of factors, some of which are physiologic and genetic and make people more or less susceptible to having worse disease, but also whether the person keeps smoking after the diagnosis, which obviously makes things worse. I'm going to call it "COPD" because that is our medical term for it.

For people with mild COPD, it can mean using occasional inhalers.

For people with moderate COPD, it can mean using daily inhalers and having intermittent courses of steroids like prednisone when having an exacerbation (shortness of breath and coughing, typically) and antibiotics to cover lung infections (pneumonia/bronchitis), and maybe oxygen at home worn at night.

For people with severe COPD, it can mean being constantly short of breath, using daily inhalers, frequent courses of steroids or even nearly continuous steroids, frequent courses of antibiotics for lung infections, home oxygen all the time, and frequent hospitalizations in which breathing support is required (such as CPAP/BiPAP which provide not only oxygen, but also pressure support - they do some of the work of breathing for you), or even being put on a ventilator.

hope that is useful. Feel free to Memail me with other questions.
posted by treehorn+bunny at 9:12 AM on May 15, 2012 [2 favorites]

I'm really sorry about your dad's diagnosis.

Just to give a slightly more at-home, less-medical POV... for my dad it meant at first being out of breath when walking up a hill. Then being out of breath walking any length of time. Towards the end of his life it meant being physically unable to get up one flight of stairs unless my mum pretty much pulled him up. (Use of inhaler and frequent hospital visits and bouts of pneumonia, artificial coma etc, included.) My dad did not stop smoking.

Unfortunately as I don't remember when (and at what stage) he was diagnosed, I can't tell you how long he made it, tho I do remember the time between being told "you must stop smoking or you will die" and actually dying was less than a year (he was 52 then, so your dad's already got him beat there!).
posted by ClarissaWAM at 10:51 AM on May 15, 2012

Just to give a slightly more at-home, less-medical POV

Another one of those. My dad has it (he says he has "mild emphysema"; I don't know if this is actually what it's called or if the Dr just told him it was a mild case once.) The diagnosis itself didn't really change anything except that he got an an inhaler, which he uses regularly (daily? weekly? I don't know) and which presumably helps. He can still do everything he did before though he was never super active, partly due to unrelated health problems. But he's 84 now and he can go grocery shopping, walk up a fight or two of stairs, etc, but would get out of breath if he did anything more strenuous I think.

I also know someone else who has it, only more severe, who is younger than my dad (late 60s maybe?) and has to have an oxygen tank with her. She's not hooked up to it all the time, however. I don't know what other medications or treatments she receives for it. She's also able to get around and do the normal daily activities of a fairly sedentary American, and the physical limitations she does have come mostly from (AFAIK) other, unrelated health problems, as with my dad.

Hope that helps at least a little.
posted by DestinationUnknown at 11:34 AM on May 15, 2012

Thanks all, I appreciate the input. It's just strange that there hasn't been any advice along the lines of "oh don't worry, you'll still be here in 10 years" nor has there been anything to say the opposite. It's all just: it's a degenerative disease, you have to stop smoking, now take this medicine.

So your anecdotal experiences are very informative.
posted by HopStopDon'tShop at 7:14 PM on May 15, 2012

My sister was diagnosed with severe emphysema about 10 or so years ago, at about 30. At that time, it was mostly shortness of breath when walking up hills etc. There were also issues with lack of resistance to lung infections and that has been an on-going issue since that time.

She is now on full-time oxygen and the times when she gets infections, they get increasingly hard to get rid of (she's been hospitalised about 6 or so times over the past 10 years) and she has now had to give up work (she worked in child care full-time up until a couple of years ago), but she is still as active as could be expected. Apart from needing to do her best to avoid people with colds etc and the inability to walk far or do any kind of exercise, she lives her life as normal. Her doctors keep telling her to keep her weight up a bit (she tends to be very skinny) to make sure she has some reserves when she gets sick.

She was told recently by her primary doctor (and I haven't checked this out yet) that a gene has recently been identified that pre-disposes a person to emphysema and tests show that she has this gene. The doctor told her to tell all family members and to make sure they get their kids tested (too late for us oldies either way) in case they have it. If they do, they must never ever smoke, because the odds of them getting the disease are approaching 100% if they do.

From what I can gather, the prognosis depends almost entirely on the individual. My sister is determined to live until her kids are all 18 and out of the reach of her psycho ex-husband (almost there). She's pretty tough anyway, so would fight this no matter what. She has lived well beyond anything the doctors said she would and they have given up trying to guess how much time she has left - not only has she out-lived their best estimates, she's fought off a couple of infections that should have killed her. I doubt that she has it in her to do it again, though. A test outcome of 26% is not good, from memory, but if he stops smoking, does what the doctors tell him to and keeps up the fight, who knows?
posted by dg at 10:14 PM on May 15, 2012

« Older Orchid Dead or Alive?   |   Have my graph and graph it too? Newer »
This thread is closed to new comments.