Patient Comments: Emphysema - Experience

Question:

Please share your experience with emphysema. Submit Your Comment

Comment from: clara, 55-64 Female (Patient) Published: June 17

I have had emphysema and chronic obstructive pulmonary disease (COPD) for about five years. I was on oxygen during the day but not at night. I could go about two hours without the oxygen, and then I would need it. I had a converter in the house and oxygen tanks for when I go shopping, etc. I am 64 years old and in relatively good health. The doctor said it was caused by a combination of smoking, dust here in Vegas, and 30 years of smog in California. I believed I will always need the oxygen to breathe. I quit smoking and I don’t need so much oxygen now.

Comment from: Sharing, 55-64 Female (Patient) Published: April 29

My CT scan showed scar tissue in my lungs, which I was told was the beginning of emphysema. From deep research I’ve discovered, it gets worse, if you do quit smoking and if you don’t quit smoking. Either way it progresses. You can never have smoked and still develop emphysema. You can smoke only two years, fifty years ago and still develop emphysema. It appears, and once you start recommended medications, it still progresses progressively. My researching tells me it doesn’t matter what you do, none of it really helps.

Comment from: Linda B., 65-74 Female (Patient) Published: April 23

I’m a 65 year old woman who has been diagnosed with mild emphysema last spring. It took me 3 months to quit smoking even knowing I had it! I still crave cigarettes almost every day, and I admit to sneaking a puff now and then. I have just begun to notice that I need my inhaler more often than before. I admit to being scared of lung cancer, which generally, once diagnosed, leaves one only a short life expectancy. I can do with some encouragement.

Comment from: DDWA, 65-74 Female (Patient) Published: July 31

I am a 74 year old female, who was diagnosed with mild emphysema and bronchiectasis after having a lobectomy due to a very small stage 1A adenocarcinoma in the lower lobe of my right lung, in 2013. I'd smoked very heavily throughout my 20s, 30s, and 40s; 3 packs/day and then had quit smoking 20 years prior to my diagnoses. I am one of the most fortunate human beings alive to have had such a minor cancerous tumor and to have had no further trouble since, other than my bronchiectasis and emphysema.

Comment from: dufuss, 75 or over Female (Patient) Published: April 27

I am 78, female and have stage 4 emphysema. I smoked 43 years and quit before I was diagnosed, about 17 years ago. I am on oxygen 24/7, but didn't think I had emphysema because I never had a cough or any symptoms except my pulse, and oxygen kept going down. I am now on 4 to 5 liters of oxygen. I'm not afraid of dying because I had a near death experience in 1961.

Comment from: clara, 65-74 Female (Patient) Published: June 19

I was diagnosed with emphysema and COPD 5 years ago and have been taking Spiriva and Advair plus nose sprays to slow down the progression. My symptoms have always been shortness of breath, and dizziness. I am a 64 year old male.

Comment from: Munday, 65-74 Female (Patient) Published: September 07

I am 65 with stage IV COPD, chronic bronchitis with severe emphysema and hyperthyroidism. I just retired a year ago and get very little exercise. I have accumulated some belly fat and am looking for exercises to help this. I cannot even do a sit-up.

Comment from: angie105, 45-54 Female (Patient) Published: June 15

I was 29 when I was diagnosed with COPD. My left lung collapsed. I had the alpha trypsin test done and it was negative even though my parents also had emphysema. Now I am on oxygen and I am trying to deal with being only 47 now and having to be on it at such a young age.

Comment from: Wayne, 65-74 Male (Patient) Published: November 22

I smoked for approximately four years, from age 18 to age 22. I am now age 66 plus and was very recently diagnosed with emphysema. I had for some time now noticed having difficulty catching a deep breath. Never in my wildest dreams did it cross my mind that I may develop a serious lung disease, but here I am with a serious case of COPD. I am only writing this to inform others that if you think you will escape the dangers of a serious lung disease please think about it again because it is not avoidable under any circumstances. It will catch up with you in time.

Comment from: Daveeympr, 65-74 Male (Patient) Published: November 15

I have just been diagnosed with severe COPD emphysema. It came on rather quickly over the past year from a shortness of breath at times to chronic shortness of breath nearly all the time. I smoked for 45 years so this is something I did to myself even knowing the risks of smoking. I quit 12 years ago and thought I was okay but that has proven wrong. I know this will eventually kill me it is just the fact of the matter. I just want to tell all the kids starting to smoke to quit now. It is not cool or near it. I am always short of breath, cannot lie flat to sleep, need oxygen and am up most nights coughing steadily. This is not something you want, so please quit smoking for your own sake.

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Comment from: tschmer, 45-54 Female (Patient) Published: April 01

In December 2013, I had anaphylaxis and it closed my airway. I was without pulse and oxygen for 12 to 14 minutes. My husband performed CPR and first responders intubated me. I was recently blindsided because I was told I have emphysema yet I never smoked. I have had asthma for years and lived in volcanic haze in Hawaii 20+ years, 3 years eating in smoke filled casinos in Vegas. So, I can truly tell you second hand smoke is just as damaging for you as first hand smoke is.

Comment from: modestomoody, Male (Caregiver) Published: January 29

My grandmother in law is 65 years old, and has been diagnosed with emphysema, COPD (chronic obstructive pulmonary disease), along with many other ailments. She’s on oxygen and for the past few years she has made over a dozen trips to the hospital each year with stays from two days to two months. She currently takes Norco for pain, I wonder if taking these type of pain pills and possibly over a long period create more infections in her lungs than without taking them.

Comment from: hopelessly COPD, 55-64 Female (Patient) Published: November 20

I was diagnosed with COPD & emphysema in May of this year. I have been smoke free for 14 months. I quit because my first granddaughter was going to be born! I didn't want to smell like an ashtray when I held her! Since then I have been having trouble breathing, gained twenty pounds since quitting smoking I am exercising and not losing any weight, seeing a dietician and being told to quit eating practically! I have been depressed and feeling like nothing is working! There's got to be a way to make me feel like my chest isn't so tight feeling like something is stuck in my chest.

Comment from: Mary, 45-54 Male (Caregiver) Published: October 08

My husband was diagnosed several years ago with emphysema. He was able to quit smoking and we stayed on top of any illness. He has been hospitalized with pneumonia every year. His breathing has been getting worse but oxygen levels stay in the 97 to 98 range except when he’s in hospital. For a year now he has been passing out. It is only for 1 to 3 minutes and was only when he would start coughing. The doctor has changed his medications around but now he passes out when breathing a bit hard. Also his feet swell up and are numb all the time. He uses a cane now.

Comment from: snapperlou, 65-74 Male (Patient) Published: September 02

I've had emphysema for four years. I am taking Spiriva and Advair. I started with oxygen at night, now all day long. Nothing seems to help. The minute I start to walk around the breathing gets bad. Even the oxygen doesn’t seem to help.

Comment from: 45-54 Male (Patient) Published: September 02

I had a quadruple bypass 3 years ago. To make a long story short my cardiologist told me that I had the early signs of emphysema and that my heart was also slightly enlarged. I continued to smoke, but found myself increasingly fatigued. Simple things like walking down the street were very difficult. I have finally stopped smoking with help from the patch. I have not had a smoke for 14 days now and immediately felt the benefits of not smoking. It's not easy but I am determined to succeed. I want to feel good, and alive and energetic besides, I have a 10 month old grandson and I want to watch him grow up.

Comment from: sally, 55-64 Female (Patient) Published: August 18

I am 63 years of age and was diagnosed with emphysema just over 2 years ago. I went on the patches the day after I found out and managed to quit the habit, despite finding out that my husband had been cheating on me for 5 years. It was really difficult to keep off the cigarettes because I was so stressed at finding out about my husband's affair. However, after smoking 45 - 50 a day, I'm still off them and although my condition has not improved I'm very proud of my efforts. If I can do it, anyone can.

Comment from: Ben, 45-54 Male (Patient) Published: August 18

I was told in I I was told in I had COPD Emphysema; I was a heavy smoker, Fire fighter, mechanic and a rough life style. I smoked 4 packs a day. When I was in the hospital, I would leave my room in a wheelchair and go outside to smoke. Doctors get mad when you do that! After a near death episode, my pulmonary doctor told me about Chantix. After a couple of months I quit smoking and have no desire to. So check into it! My hardest adjustment is not being able to do minor things without I want to enjoy life with my children, wife and grand kids!

Comment from: Martha, 65-74 Female (Patient) Published: August 17

Two and a half years ago I suffered a pulmonary embolism in both lungs that was so severe that doctors could not believe I was alive. Pulmonary hypertension developed as a result, I just had test that said I have emphysema. My symptoms of labored breathing walking a flight of steps, and other exertion took me to the doctor. At that time, my oxygen level was 89 that sent me to hospital. Scan and stress test and echo showed no damage to my heart, just emphysema. I don't know which diagnosis would be worse. Anyway, I will enjoy my life, going back to school, college, and go next week for a breathing test. Hope this dialogue will help some others.

QUESTION

COPD (chronic obstructive pulmonary disease) is the same as adult-onset asthma. See Answer
Comment from: barbara 4, 45-54 Female (Patient) Published: August 06

I was diagnosed with emphysema two years ago. I took another year and a half to quit smoking. Last week I had to be flown out to another hosp for resp failure. After a week of kicking myself for not quitting sooner my new doctor informed me that I had a rare form of genetic emphysema and would have gotten it anyway. He thought that the information would make things better and maybe it should, but now all I think about is that my kids now have this to look out for as well. I had a heart attack at 39 and found out about genetic heart disease then. Wish I could just say to the kids that I messed up and to learn from my mistakes. What is to learn? They all are dealing with this in their own ways but I have to agree with my oldest

Comment from: Jkm, 55-64 Female (Patient) Published: July 20

I was just diagnosed with emphysema at 57 and have been smoking for almost 40 years. I was in a state of shock. I am female, and trying to quit isn't easy. I have allergies to the adhesive in the patch, so it's been difficult with this reminder itching away. My insurance won't pay for smoking cessation and I called the quit line, only to wait for three weeks to get any information. I am still waiting for their patches to arrive. I have a co-worker who is on Chantix and is slowly quitting, so there is support. I am on two inhalers.

Comment from: hc, 45-54 Female (Patient) Published: June 03

I am 47 years old and have just been told I have emphysema. I’m not quite sure how I feel about it yet. I guess I am shocked, but not surprised. I have smoked heavily 30 to 40 a day for the best part of 30 years. I always knew the risks, but that it will never happen to me. Guess what it did. I have so many questions to ask. I went to my doctor today and said I have emphysema he said yes I heard. If he had read my notes 2 weeks ago when I went to him with a really bad cold and was having a lot of trouble breathing he would have known then, and so would have I. He didn’t examine me and only gave me 25mg of Amoxapine. I found out from an eye clinic after being referred to by my optician. I will have to rely on them for help and to answer my questions. I have cut down my cigarettes to 12 a day. I am breathless all the time but not to bad. My back hurts, and some times I get sharp pains under my ribs and in my right lung, but the worst thing is feeling as if I’m going to have a heart attack everyday. I often would joke oh I’m having a heart attack. Little did I know how close it could be. I guess I will have to wait to go back to the eye clinic to get my answers and see what they recommend.

Comment from: danna, 75 or over Female (Patient) Published: March 26

I have had emphysema for about five years. I am on oxygen during the day but not at night. I can go about two hours without the oxygen, and then I need it. I have a converter in the house and oxygen tanks for when I go shopping, etc. I am 80 years old and in relatively good health. The doctor said it was caused by a combination of smoking, dust here in Vegas, and 30 years of smog in California. I guess I will always need the oxygen to breathe.

Comment from: teacup, 45-54 Female (Patient) Published: March 23

I was diagnosed with emphysema two years ago, and like a fool, I continued to smoke as the symptoms were not too bad then. Now, sadly, I’m faced with lung cancer, and my breathing has deteriorated. If only I had paid attention, I might not be where I am today.

Comment from: Midwest Mudshark, 55-64 Male (Patient) Published: January 26

Those who suffer from emphysema would know what we suffer in an attempt to catch our breath and Primatene Mist was such a great part of treating and living with our problems at home and at a reasonable price.

Comment from: Pamela, 25-34 Female (Patient) Published: January 08

I am 32 and I was diagnosed with mild emphysema at 31. I had blebs in my lungs when I found out. I have 4 small children two of them are disabled and I am depressed. I smoked for 17 years. I’ve been tested for the hereditary test alpha 1 and it was negative.

Comment from: outdoor-joe, 45-54 Male (Patient) Published: November 01

I am a 50 year old male who has just been diagnosed with COPD emphysema. Both of my grandfathers had this disease and only survived 5 to 6 years after being diagnosed. At one point I was smoking 3 packs a day and now I have been able to cut it down to around a half a pack, a little more or less depending on what I am doing.

Comment from: 65-74 Male (Caregiver) Published: September 25

My father is 66 years old and has just been diagnosed as having emphysema after an appendix operation. He quit smoking 30 years ago and is not overweight at all; however, his job has him working with chemicals. He thinks his life is now over but will not give up work. I am trying to convince him to improve his lifestyle: to include cardio exercise and relax more. He is a very stubborn man.

SLIDESHOW

How to Quit Smoking: 13 Tips to End Addiction See Slideshow
Comment from: chief84, 55-64 Male (Patient) Published: July 20

How dumb could I have been? I watched my father die from emphysema, had a brother die from cancer related to smoking (only four years older than me), and yet for eight more years, I smoked and smoked, saying that it would never happen to me. I quit smoking a month ago and a week after I quit, I woke up with blood all over me and was coughing it up. I went to my doctor for help. After lots of tests and X-rays, I found out I have emphysema. Do I blame the cigarette companies? No, it was my own fault since the warnings were there and all my doctors told me to quit. I figured that it would never happen to me. I am proud of the fact that I was able to quit.

Comment from: blueeyes, 55-64 Female (Patient) Published: July 20

I am 63 and have just been told that I have emphysema. About 10 years ago, I started having trouble breathing. It got so bad that I had to stop making love with my husband because I couldn't breath. I quit smoking in 2003. I thought that I would start feeling better once I quit, but I didn't. In April of 2004, I was really having trouble with my acid reflux and when I went to the doctor for my yearly scope, he said that I didn't need one: I needed a surgeon. I had a hernia and my stomach was lying on my lungs. I am able to breathe better but have been diagnosed with emphysema.

Comment from: Sally, 45-54 Female (Patient) Published: June 30

I was diagnosed with emphysema in 2005 after getting several chest infections. I’m now on three different inhalers a day, several times a day. I’m lucky in the sense that I live in England, so health costs aren't an issue. I’ve given up full-time work because I get too tired. I hate it; I’m only 48, so the plans I had for my life now that my children are grown have gone down the drain. One of the hardest things is knowing who to talk to about your worries and fears of this illness. I’m dreading the day when I have to go on oxygen. My doctor will never tell me what to expect from this because he says if people know they tend to get worse faster! So I’m very much in the dark.

Comment from: Mike, 45-54 Male (Patient) Published: June 30

Some five years ago, I had terrible coughs that eventually lead to shortness of breath. During the next year, I picked up a cold or flu from any imaginable cause. I decided to go see my physician and was diagnosed with emphysema. I immediately stopped smoking after 25 years. I always wondered why I could not do athletics during my younger days; however, I still joined the compulsory military service and became an instructor during the required period. Needless to say, it changed my life forever, and it is difficult to enjoy an active normal life. Most times it is embarrassing as I depend on my wife to assist with physical duties. But I suppose you learn how to deal with it. The worst part is that it took me 42 years before I knew. Now I am posed with the question on what to tell my immediate family (I have two kids). The answer to them is asthma, as I do not wish to tell them it is genetic. Neither do I wish to alert my dad (my mom passed away some time ago) as he appears to have a normal life.

Comment from: mattierose, 65-74 Female (Patient) Published: May 17

I am 73 years old, and I was diagnosed with emphysema last October. It was quite a shock, as I stopped smoking 35 years ago. I am not too bad and can lead a normal life, but I wish I had never smoked.

Comment from: Luanne, 25-34 Female (Patient) Published: May 17

I am 27 years old and was just diagnosed with emphysema three weeks ago. They tell me I am pretty close to having to be on oxygen, but we are hoping that for now the meds they have me on will help (and hopefully for a couple of years). I am scared as hell. My grandmother died six months to the day from when she was diagnosed with emphysema. I have two small children that I really, really want to watch grow up. I have tried quitting smoking, but I get stressed out and then light one up. I have no idea what I am doing; I just wish I knew what to do.

Comment from: t2sku, 19-24 Male Published: March 23

I’m 23 and worked at a temp job in which a supervisor had me work as a lookout for more people cutting up a huge steel tank with a rubber liner, torches, and grinders. These released huge amounts of thick, burning rubber smoke in a confined area that I inhaled trying to do my job. Well, three years later, I have emphysema.

Comment from: jillie, 55-64 Female (Patient) Published: August 26

I am a 62 year old female, recently diagnosed with emphysema, though I've long known what was coming, always in denial I guess. I smoked 2 or 3 packs a day, but quit cold turkey, now I am like a junkie in withdrawal. As I read all of the posts, I could reach out and touch the fear. We all have the same fears and I hope for all of us that better days are coming. That while it will be hard, hopefully the end isn't here yet.

Comment from: jshepherd, 35-44 Female (Patient) Published: August 06

I'm a 39 year old female. I have never smoked or been around significant second hand smoke. But I was diagnosed with emphysema this week. I'm scared too death. I can't stop worrying. I just don't know how this could happen. I have read a lot about Alpha 1 antitropin deficiency and other causes. I have an appointment with a specialist soon.

Comment from: mdixie, 65-74 Female (Patient) Published: June 03

I was diagnosed with emphysema last year. I do not have any cough or wheezing like I thought would happen. I am now on oxygen and inhalers but am still short of breath. I wonder if this is normal.

Comment from: 35-44 Female (Patient) Published: May 26

I am 35 years old and I went to the doctor a week and a half ago with chest pain and they did a chest x ray. They found a spot and did a CT scan and then found emphysema and possible breast cancer. I am very afraid, I have smoked since the age of 14 and I find it nerve wracking to not smoke as I go crazy. I am afraid.

Comment from: mothershelper, 75 or over Female (Caregiver) Published: May 26

My Mom has emphysema from passive smoking (my dad smoked), but is very allergic to many medications which affect her heart. Are there any natural alternatives that will give her some relief and "air" that she needs

Comment from: taboo2u1, 35-44 Female (Patient) Published: April 23

I was diagnosed with emphysema at the age of 40 and was shocked as I smoke, but not a lot. I still haven’t come to terms with this and I’m very scared. I get a lot of discomfort from this and would love to know how people come to terms with this.

Comment from: betty, 55-64 Female (Patient) Published: April 23

I smoked for 39 years and was diagnosed 11 years ago when I went to a hospital in an ambulance because I couldn't breathe. I went cold turkey and never had another cigarette, but it was too late. There is no reversal. Now I can only walk one block without running out of breath. I've had a triple bi-pass. I can only walk up about 10 stairs and I have to sit down and catch my breath. I need to exercise, but can't because every time I start I lose my breath. I'm 50 lbs. overweight and I can't stand for any length of time.

Comment from: dlite, 65-74 Female (Patient) Published: March 27

I am 72 and have been on oxygen 24/7 for 10 years. It came from 30 years of smoking. I have been meaning to improve my general health in every way possible, but I also have hypertension and several aneurysms so there are several fronts to this war. I am trying to stay active and eat wisely. One of my biggest problems has been doctors who prescribe medications that conflict. I constantly check for myself before accepting any additional medicine for any reason. This has saved my life several times. I find that many doctors fail to read the warnings.