Emphysema

Question:

Please describe your experience with emphysema. Submit Your Comment

Comment from: Q, 45-54 Male (Patient) Published: June 12

I was diagnosed with stage 3 COPD (chronic bronchitis and emphysema) and asthma about a year ago. I finally quit smoking in April. I am always in pain. I have muscle cramps that are like charley horses, and tingling in my fingers and feet. I can walk about 300 feet on a good day but that is pretty much it. The stairs are ok some days but most days they are not. I have headaches every day, I have chest pain and pressure (the cardiologist says my heart is good). I started smoking when I was 9 and started a pack a day at 17. I regret smoking but still want them every day. I try to remain active but it is difficult. Some days I will actually do something for a few hours but wind up in front of the TV with my oxygen on. Good days are SpO2 of 92 to 96. Bad days it stays around 85. I am depressed and try really hard to keep the depression under control. I am losing my wife and my life. Sometimes I feel like why bother.

Comment from: Henrya, 55-64 Male (Patient) Published: October 10

Believe it or not emphysema is beatable. I did it. I'm male and 57 years old. I was diagnosed with mild emphysema 6 years ago. Before I was diagnosed, I was smoking on average 30 cigarettes/day at least for 35 years. I quit smoking the same night that I was diagnosed. I never smoked again. I had my regular life and no change in life style after I was diagnosed. Six months ago I had much more shortness of breath. I went to my doctor, they took PFT and CT scan, and emphysema had progressed to higher level to moderate level. I asked the doctor how long I will live. It progressed from mild to moderate within 5 to 6 years. He had no answer. I was prescribed steroid tablets for a week, and shortness of breath improved 40 to 50 percent. Then I was prescribed Advair inhaler. I used it for a month and I had better breathing but too many side effects, dizziness, and tiredness. I stopped Advair after a month. I decided to change my life style. I did it and beat emphysema. I did either brisk walking or aerobic activity for minimum 60 minutes/day. I pursued lips and diaphragmatic breathing 3 to 4 times a day, 5 to 6 minutes each time. Most important was eating habits change, I take vegetable, fish, meat, egg, seeds and fruit on a daily basis now. No processed food. Processed food like sausages and bacon are not are dangerous for emphysema patients. No potato, rice and white bread. I'm taking vitamin A and NAC supplement on a daily basis. I am taking flax and chia seeds every day. I had PFT and lung scan last week. Results show no emphysema or obstruction. Doctor says he has never seen such a thing in 30 years of his career.

Comment from: ladycooper, 55-64 Female (Patient) Published: August 07

I have emphysema and have never smoked a day in my life. I cough all the time, some bouts for as long as 30 minutes. I do not really know how to cope with it and have a poor quality of life. I have had it for about 2 years and have been told that I could die within 5 years.

Comment from: Me, 55-64 Male (Patient) Published: October 04

I have emphysema. I use the albuterol inhaler whenever I feel that I need it. I wheeze when I lie down to sleep either for a nap after breakfast in the morning, as well as when I try to sleep at night at bedtime. The wheezing keeps me from falling asleep and it is bothersome. I do admit that my breathing is getting worse over time. I try to run with my dog and I do go to the gym every day to work out because I like doing something but I always take two puffs off my inhaler before I go. I eat most of my meals at home and I prepare nutritious food and I eat full meals so that I don't snack on junk food in-between my three meals. I am keeping my focus on trying to stay positive however I do know that my time on this earth is now limited because I can see the progression of my disease. I am not going to doctors because there is no cure, only treatments. Yes, I do want to live but I know that I only have about five years.

Comment from: Patti, 65-74 (Patient) Published: April 13

I was diagnosed with stage 1 emphysema in 2010. Not sure how long I had it before being diagnosed. I am now in stage 2, and losing my breath quite easily even when doing housework, and I have to walk my dogs slowly. I sometimes have chest pains and tightening like I'm wearing my bra too tight, when I don't even have one on. I was doing fine while exercising and riding my bike, but have stopped doing both. I keep saying I'm going to start again, but sometimes wonder what the use is. I don't understand why they haven't done more studies on emphysema, plenty of people die from it. I guess I'm afraid of the death, as I've heard it isn't pretty. But I try not to think about it. I did this to myself by smoking for nearly 40 years, but I did quit the very day I was diagnosed, with the help of e-cigarettes. Don't start smoking, young people and if you have, stop!

Comment from: Beth, 55-64 Female (Patient) Published: June 12

I smoked for 42 years, diagnosed with mild to moderate emphysema just a couple of months ago, and it was found quite by accident. I'm having a terrible time quitting smoking. I know I have to but believe I'm in denial about the whole thing. How quickly does this disease progress, started with 76 percent PFV (pressure-flow-volume). I am terrified and so are my children, I am 59 years old. I have been given the nebulizer and inhaler. I don't use either one. I spent a great deal of my life outside but cannot any more, it takes my breath away, literally. I wonder if it is too late for me! I don't know what to expect and how long. I'm desperate.

Comment from: Paul hill, 35-44 Male (Caregiver) Published: June 06

I was diagnosed with emphysema back in 2014. I did not understand what the disease is and how it affects you but 5 years on it has been a nightmare trying to do simple things like walking and I am finding it difficult because of the shortness of breath due to the disease. I am still smoking and know I should really have stopped when I was diagnosed with the condition. I know, I more than likely have not got much of life left due to smoking, I wish I had never started smoking when I was young but that's life you choose and have to live with. What pains more, I met a beautiful woman just as I got diagnosed with the condition and not going to have the life together I hoped as it is going to be cut short now. Also I was diagnosed with the condition at the age of 35 years which to me is really bad as you are supposed to get this condition around your 40 to 50.

Comment from: David , 65-74 (Patient) Published: June 01

I was just diagnosed with emphysema and I'm just going to keep on exercising and I stopped smoking.

Comment from: steven webber, 45-54 Male (Patient) Published: May 30

I was diagnosed with emphysema about 5 years ago due to smoking cannabis for 30 years. I still smoke cannabis as well as 30 cigarettes a day and you can hear me breathing from the other side of the room and I really do not care. I want to die but am not going to jump in front of a train or from a building. I hate life and can see no good in it.

Comment from: Doris, 65-74 Female (Patient) Published: October 06

I am 72 years young, and I started smoking when I was 13; I know that was crazy. But I did it anyway, both my mother and sister died of emphysema, I watched them gasp for air but that did not stop me and I smoked for 60 years. I take 2 inhalers, I can hardly to anything; oh, let me take that back, I can't do anything. I just about walk to living room from my bedroom and I cannot breathe, I am on 2 1/2 liters of oxygen, but it really doesn't help. I can take a shower without help, find that I can't breathe; so many things one can do, but life just stops, and you only have one thing left and that is trying to breathe. Please, if you smoke, quit! I thought I would never get COPD or emphysema but you can and you will. Please quit today.

Comment from: Billy, 65-74 Male (Patient) Published: June 26

After having a persistent cough for over a year, I was diagnosed with COPD in March this year. In that time my emphysema has got worse to the point where not only do I have trouble sleeping at night, I also struggle to get air into my lungs. At best, I can get about 1.5 to 2 hours sleep before I have to get up. When I do get up my routine is that I have to sit on the edge of my bed for about 20 minutes, I then literally stagger into the sitting room and open a window to try and get some air. All the heating is turned off at night and there is ventilation, but even with that nights are a misery.

Comment from: Im so scared, 55-64 Female (Patient) Published: June 24

I read all these stories and my heart goes out to all of you. I have emphysema on 98 percent of my lungs and the 1 section that was clear has a pulmonary embolism, blood clot, blocking the air to my heart. I am on Advair, Ventolin, the nebulizer and oxygen. I also take warfarin for blood clot and hopefully preventing any more. I am on a good diet and walk and ride a bike, but coughing is just getting worse. I watch my husband so scared that he may lose me at any time, I am hurting so bad. All I can say now is If anyone is going to decide to smoke, please don`t.

Comment from: Timmy, Male (Caregiver) Published: March 04

I watched my mom get weaker every day. This emphysema knocks one down to nothing. There were many 911 calls with heart attacks and other issues. Lung cancer finally developed, I never realized that these two could go together. She could not walk to the toilet by herself. I had to force her to stop smoking as she was a vehement smoker, even with COPD. I had to threaten my mother with a nursing home. She passed from pneumonia. Her life was awful. If you smoke, please stop, please don't start. This is a long and terrible way to die.

Comment from: christine, 55-64 Female (Patient) Published: November 13

I am 59 and have been smoking 52 years. Thanks to one of my big sisters I found out in 2012 that I have emphysema. I have 3 inhalers but I don't think they help. I don't get much sleep, I am up sometimes at 2 in the morning coughing and by the time I clear my chest I am wide awake. I don't go out because when I start coughing I wet myself and people look at me and I feel stupid. I have tried everything to stop smoking but nothing works, and let's face it, the damage is done and I enjoy my cigarettes. I used to have 2 jobs, I worked all day and bar work at night but am not entitled to a penny. My husband works, he is not on a good wage but has to pay for everything, even my medicines.

Comment from: Peterson Allen, 45-54 Male (Patient) Published: July 18

I was told I had emphysema in 2014 when I was 45 years old. I smoked for 30 years, but quit smoking as soon as I was told that I had COPD. Quitting smoking was the hardest thing I ever did. But I knew I would die if I didn't. My health was getting so bad that I needed oxygen 24/7 and was down to 92 lb. Thankfully, in 1999 I got lung volume reduction surgery. It saved my life. I no longer needed oxygen and was able to climb stairs, dance, and travel the world. That good fortune lasted for almost 13 years. I am now back on oxygen 24/7 and can't climb stairs, dance or travel the world.

Comment from: Lou, 35-44 Male (Caregiver) Published: April 07

I am the partner and caregiver of a severe emphysema patient. My father also passed away at the age of 60, three years ago. My partner and I found out a year ago he has this horrible disease and in a year it has got a lot worse. He is 40 years old and too young to die from this disease. He still smokes as he says the damage is done now, doctor says it will reduce the damage if he gives up. But even I don't believe that, it's hard can't plan anything as we have to see how he feels in the morning of the day. This disease has taken away my dad and now my partner of 17 years.

Comment from: james, 45-54 Male (Patient) Published: February 09

I never had any problems while I smoked. After smoking for over 20 years, I quit cold turkey. A month after I quit I started experiencing shortness of breath. In the 3 months I had to wait to get to the VA (Veterans' Affairs) hospital, I have been hospitalized 6 times and transported by ambulance twice. My diagnosis: asthma and early stages of emphysema. Now I am on 2 inhalers and received a breathing treatment machine from the VA. I have good days and bad days. I am so scared. I am still working full time. I have a beautiful family.

Comment from: deepal, 65-74 Male (Caregiver) Published: December 17

My father is a physician and 68 years old. He has been smoking since he was in medical college and now for 2 years, he has been diagnosed with emphysema. He didn't share it with anyone, but as a daughter and as I am a physiotherapist myself, I forced him to get x-ray chest done. It was then that I came to know. He is having cold and cough almost all the days since 2 years. He is practicing and doing all the activities and has a healthy lifestyle, but due to coughing, at night he is not able to sleep properly and have to sit up many times. This makes me and my mother very worried and we feel very bad but helpless. He is not ready to stop smoking though he has reduced the amount he smokes. I can't see him suffering and get worried about future as it is progressive. He is doctor himself so I can't tell him anything as he knows the consequences, but I am worried and caring daughter.

Comment from: JSC, 55-64 Female (Caregiver) Published: December 13

I am 28 years old and the daughter to my mother who is 63 and has mild/moderate emphysema. I have needed to find any information possible on the treatment of this disease as frankly I find watching my mum suffer everyday just sometimes too much to bear. She found out 3 years ago about her disease. I feel much is kept 'hush hush' from me as I know she doesn't want me to worry. She was hospitalized once, released and still continued to smoke not taking it very seriously and then a year later found herself in the same position again and it was the scariest thing of my life!!! Finally after much emotional begging from me and my family and telling her I couldn't bear to watch her do this to herself she listened and stopped smoking. I knew she 'had' a chance to make a difference to stop smoking and then amazingly she did-cold turkey. She had smoked from had the age of 16 to 61 so I knew how difficult it would be for her-I have never been SO SO proud of her. I am so proud of her but I still have to deal with this and want to do anything to help her as our bond between mother and daughter means everything to me!! Your website has helped me so much and the phase 'it's not a death sentence but a disease to be treated' made my heart so much lighter.

Comment from: daughter who cares, 75 or over Female (Caregiver) Published: December 30

I am the caregiver and daughter of a patient who has emphysema. My mother is 78 and was diagnosed with this disease more than 10 years ago, but she still continues to smoke. Two of her 4 brothers have already died from the disease. Her 2 brothers who are still living (one older and one younger) both smoke and they also have the disease. All of them have been heavy smokers their entire life and they refuse to give up smoking. My mom and her brothers have to be on oxygen all night and the majority of the day and their quality of life is very minimal – yet, they continue to smoke. They can't walk very well or do any activities that they once enjoyed doing and they still smoke. Right now my mother has deteriorated so much that she is on hospice. Her oxygen level is around 82 to 85% on most days. She is pretty much confined to the house and spends most of her time in her bedroom under oxygen. My father also had the disease and it weakened his heart to the point where he had a heart attack and passed away 14 years ago. He also was a smoker. It is very difficult for a loved one to see so many of their family members suffer from this disease, but to know they are so sick and they still smoke is almost unbearable. I have never smoked and never will, but I have been around second hand smoke for many years so there are times I wonder about my fate. If you have the disease and you are reading this please remember your loved ones are suffering too. Watching a person you love fade away is very heartbreaking. If you can break the habit of smoking do it for yourself and for those who love you.

Comment from: 45-54 Male (Patient) Published: September 11

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: snapperlou, 65-74 Male (Patient) Published: September 11

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: stratbastard, 55-64 Male (Patient) Published: April 10

Taking control is the single tool you have left, so get out and move every day. Quit smoking or emphysema will progress like wildfire. I ride my bike 20 miles every day, sometimes climb a butte (slowly) and speed walk daily with hand-held weights. Weighted vests are good as well for adding a bit of load.

Comment from: odeth, 45-54 Female (Patient) Published: December 27

I was exposed to lead as I was an electrical technician before, since I was 20. I also smoke. I am not sure if I have emphysema or chronic bronchitis. I exhale lots of air and inhale little.

Comment from: sharon, 65-74 Female (Patient) Published: July 18

I have emphysema and have been told the lining of my lungs has gotten thicker.

Comment from: AussiPJ, 55-64 Female (Patient) Published: January 22

I am 60 years old and and the end of November 2012 discovered by chance that I had high blood pressure, 160/120. I immediately treated it. The caridiologist told me I have aortic regurgitation and dilatation of the aortic valve. Yesterday after a scan I was told I have emphysema. I have always been fit, am vegetarian, have never smoked but have terrible stress after being robbed.

Comment from: Jen, 55-64 Female (Patient) Published: November 15

I was diagnosed with emphysema in 2008, I have to be on oxygen 16 hours minimum. I have 27% lung function. I have lost count of the times that I have been hospitalized. I worked full time, but found it was getting too much for me, so I now have Wednesdays off and it's made the world of difference.

Comment from: Sagebrush, 65-74 Male (Patient) Published: September 20

Right after my 58th birthday I was informed by my doctor after having some chest X-rays that I had mild emphysema. I had smoked for 35 years. I kept smoking and started getting sick about 3 or 4 months later. I ended up in intensive care for six days in septic shock from double pneumonia and almost died.

Comment from: Caan, 55-64 Female (Patient) Published: June 14

I am a long term smoker and I have just been diagnosed with this horrible disease. I first started to experience difficulty in breathing about 10months ago since then it has got progressively worse, I have come back from the hospital today where I was told that it is damaging the right side of my heart. I don't know if I can give up smoking even though it is putting me through this and if I do I am told I cannot repair the damage.

Comment from: phyl7684, 65-74 Female (Patient) Published: April 26

To all those involved in the treatment and warning, I applaud all of you. I am a COPD patient since 1995. I haven't smoked in 16 years, but the damage was done long ago. I am now 72 years old, and now my doctor suggests lung reduction. My CT scan showed that the upper part of my lungs is destroyed by emphysema. I have 37 percent left in my lungs that do not get enough air because of the blockage from emphysema and the scarring. I have to make a decision about the lung reduction. I am kind of scared of the surgery considering my age. On a lighter note, your article was very informative and I want to thank you. It gave me more information than my physician. Sincerely, Phyllis

Comment from: tom, 45-54 Female (Caregiver) Published: January 05

My mother is a heavy smoker. Before Christmas, my mother was taken to the hospital and was told that she has emphysema. She is only 50 years old. This disease changed my mother's life. She used to be out every morning helping elderly people and volunteering at the church and other things. Now, she can barely walk a flight of stairs. This is really frightening.

Comment from: Irish, 75 or over Female (Patient) Published: December 29

I am a woman of 79. I stopped smoking in November 1993. I have had emphysema for about four years, although as far back as 6 years ago I found that I was having trouble walking up steps. I try to exercise, but have no strength in my legs and lose all energy. I do get breathless and cough a bit, but I found that a nasal spray clears out a lot of the mucus and cuts down the coughing. The things that bother me the most are the cramps. I get them in my legs, body, and hands mostly. They are extremely painful and take a lot of heat to dissipate. I find that a large glass of water and deep breathing also help. I can't find anyone else who also gets these horrors and I'm wondering if they are symptoms of something else and not just lack of oxygen to the muscles.

Comment from: Michael, 65-74 Male (Patient) Published: December 17

About 10 years ago I started having breathing problems. I went to a doctor and found out that I have emphysema. About 30 years ago I had quit smoking and thought I had gotten away disease-free. I was waking up coughing up mucus. I had to have a cigarette to stop coughing. Now I'm retired and living with my disease. I use mostly Combivent to control my symptoms. I tried more expensive medications without success. Physical condition has a lot to do with symptoms. When I gain weight I have problems. Right now I'm switching to a new diet in hopes of improving blood flow.

Comment from: jls, 45-54 Female (Patient) Published: October 01

I have recently (two months ago) been diagnosed with emphysema. I have been a smoker for 20 years. I quit smoking two months ago; the next day I was diagnosed. I currently work every day, but I am finding it more difficult energy-wise. I am also dealing with personality change (mood swings), and I wonder if it is from my disease or from recently quitting smoking.

Comment from: polly, 55-64 Female (Patient) Published: December 21

I've had COPD about 20 years, after 25 years of asthma. It changed but every doctor said it was still asthma. I was diagnosed 4 years ago. But whenever I look at what the symptoms are one of them is cough. I don't have one and even when I smoked (21 years ago) I didn't. I have short days because I'm so tired after 6 or 7 hrs being up. Being out all day makes me feel like a rag doll the next. Also, the winters are getting worse. Cold wind knocks the air right out of me. I'd really like some input about the lack of cough.

Comment from: shirley, 55-64 Female (Patient) Published: October 05

I have severe COPD and take Spiriva, Seretide, salbutamol nebs (2x daily) and ventolhattin as needed during the day. I have found exercising to be of great benefit to me. It keeps up the strength in my legs and somehow enables me to breathe better. If I dont exercise I can feel myself getting weaker and breathless. When one gets like that it is easy to stop moving about and just give in to it. So if you want to feel a lot better start walking or cycling, eat plenty of fruit and vegetables and above all throw away the cigarettes.

Patient Comments & Reviews

Medically reviewed by James E Gerace, MD; American Board of Internal Medicine with subspecialty in Pulmonary Disease

REFERENCES:

eMedicine.com. Chronic Obstructive Pulmonary Disease and Emphysema
<http://emedicine.medscape.com/article/807143-overview>

eMedicine.com. Emphysema.
<http://emedicine.medscape.com/article/298283-overview>

Previous contributing authors and editors: Author: Christopher J Ware, MD, Staff Physician, Department of Emergency Medicine, Temple University School of Medicine.

Coauthor(s): Joseph S Bushra, MD, FAAEM, Adjunct Assistant Professor of Emergency Medicine, Temple University School of Medicine Philadelphia, PA, Attending Physician, Department of Emergency Medicine, The Lankenau Hospital Wynnewood, PA.

Editors: Ruben Olmedo, MD, Chief, Division of Toxicology, Clinical Assistant Professor, Department of Emergency Medicine, Mount Sinai Medical Center; Francisco Talavera, PharmD, PhD, Senior Pharmacy Editor, eMedicine; James S Cohen, MD, Consulting Staff, James Cohen, PC.

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