Lung Blog

Hi Dr. Edelman,

"Starving for air" hits home everytime I try to accomplish activities just a few short years ago I did without hesitation. I've thought a couple of times I was near death because I just couldn't get air. I've come to understand it isn't getting it in, it's getting it out. I've had heart bypass, a punctured lung, and day to day I take inhalers, meds, and hope that I'm not done yet. The other area is that becuase of the shortage of air I know my heart is suffering, and often times let's me know with pain. I've shortened my life expectancy because of it, I just hope it's peaceful when it happens.

Hi Dr. Edelman

Starving for air have been my problem since I was recently diagnose with a condition called Sarcoidosis. My condition is 90%lung involvement, which at first I was prescribed predinsone by my pulmonologist, which my condition response with no problems. Recently after seeing my rheumatologist, he decided to try me on hydroxchloroquine for a previous ankle swelling and for my lung condition. Sadly, he was not favorable of the use of predinsone. Well so far, my body is not responding to the hydroxchloroquine, and I am right back where I started gasping for air. The sad part, I told my pulmonologist, what was happening to me, He told me give the medication another week to work. It been three weeks and it is not fun feeling the tightest in my chest/throat while waiting on my this meds to work.

My lungs are so bad that I have writen to every company to to be used as a tester for meds.I am trying to get a double lung trasplant,but I have to lose weight before they will put me on the list.Every time I get close to the weight I get sick a have to do the pertazon3for 5 days 3 for 5days and so on.I eat like a pig when I'm on that.I'm just about to give up.I sat around the house all day do a little and take a treatment over and over.I'm on 3liters of oxygen around the clock.I sleep with a bypap machine that really helps me breath easier.HELP

There is so much good information about COPD at this site and on the Internet. BUT, the media RARELY even mentions COPD. The ALA can get information to all media with one phone call. Why isn't this talked about? The millions of us with COPD are very tired of feeling invisible.

I did not know that I had COPD until this year when I ended up in the hosp on a vent for 10 days I do not remember anything after I walked into ER except that I could not breathe It was a feeling that I never had before and it was scarey. Copd has changed my life completerly as I am unable to do simple routine things without getting short of breathe. The major change is I am no longer able to work as the Drs have said even a little cold could put me back in the hospital

Hi Dr. Elderman, I have a long history of lung problem's & 1 year ago thought i was going to die, as i had trouble breathing in & out & now Dr. think's i have myasthenia gravis, my diaphram goes stiff, nebulizer only worked a little & i would have flare up's a dozen time's a day. He just put me on pyridiost, helped with lung's & eye weakness, waiting to see how much it help's with leg weakness, can only take 1/4 amount any more than that & i am as bad as before. they thought i had copd, but, test showed lung's are ok. I hope this help's other's to know what else cause's breathing problem's, wish i knew before, would not of been so afraid i was going any minute. emmaj

I found out that I have COPD last December. As a non-smoker, I was quite surprised at the news. Actually, I was pretty devistated since I watched my mother die a very slow and painful death. I do realize that this was almost 20 years ago. I am getting excellent care from my pulmonologist and am optimistic about the future.

Hello friends,
My dad passed away 26 Dec. 2003 of COPD/Emphysema. It was the most tragic day of our lives when my mom, sister and I had to take my dad off of the respirator. My family new nothing about Emphysema and how to help my dad keep as much of his "Quality of Life" as possible. After dad passed away I became very involved in the ALA, Jane Martins,Breathing Better,Living Well Site and several other on-line sites. I have written stories that have been published on sites and also in newsletters and magazines. I have learned so much by researching every site I possibly could. I wrote a story about my dad called "Starving for Air", because that is exactly what I saw happening to him. I am trying to spread awareness to patients, families, caregivers and to the media, that COPD/Emphysema is a serious debilitating disease. Please do all of the research that you can. Learn how to help yourself through nutrition, exercise, anxiety, depression and oxygen if needed. I only wish I would known then before my dad passed away, what I know now. I may have been able to give him a few more years.
god bless,
Lori

I was just diagnosed with Chronic Obstructive Lung Disease with Reactive Airways after a bout with pneumonia last winter. I had begun to wonder if I might have emphysema even before the pneumonia because of family history, even though I've never smoked. Last year I noticed a definite marked breathlessness going up the stairs.

I'm athletic, walk several miles everyday and work out several times per week. This has been devastating for me, and left me to wonder about my future. I am a language teacher and have had several vocal cord hemorrhages, and a number of other serious medical conditions in the past. Now my ailments have hit the vital organs. I had hoped to retire to South Amnerica, or at least far away from the northern cold, but now wonder where this diagnosis leaves me with regard to health insurance. I've watched other people deteriorate from COPD, and I confess it scares me.

In regards to Francie's question above, "but now wonder where this diagnosis leaves me with regard to health insurance.", the answer is not good.

My husband was diagnosed with COPD three years ago. He was insured under my health insurance plan at work (his job has no benefits). When I changed jobs, I checked into private health insurance for us rather than paying for COBRA. What I found was I could get coverage, however my husband with his COPD diagnosis could not. Not for any amount of money. I wound up keeping him on my COBRA for three months until my new health insurance kicked in at my new place of employment. I am scared to death as to what any lapse in coverage on him would lead to. It is very scary to know that I now have to work to keep him insured. One of his stays in the hospital for four days was $20,000. He has only 15 percent lung capacity left and is expected to lose 2-3 percent a year. Keeping him insured and healthy as he can be is my number one priority.

I live in south Louisiana and have been gutting
flooded homes. I didn't even think about my COPD
until I landed in the emegency room unable to
breath. The mold in the houses took a toll on me.
When you see people suffering because they lost
everything to flood waters it is hard to think
about yourself. I had to stop working in damaged
homes. It was hard to not help others in their
time of need. The air here is full of contaminates,mold,dust from cleaning crews,molded
refrigerators,dish washer,torn out sheetrock,etc.
However, I must remain to help wherever I can.
This is my home and I want to be part of rebuilding my city. If you suffer from COPD
south Louisiana is not a place to be right now,
nor any time in the near future. Good health to
all who suffer from this infuriating desease.

Dear Dr. Edelman, Contributors to this site:

My husband is 69, has had Emphysema for several years and now has suffered the mean disease of Shingles. i am not sure i can pull him out of this, we have been married 45 years and throughout all the COPD instances, the Emphysema-caused denial of air to his lungs, the Shingles appear to have the power to bring him down. he is pasty white, fighting pain 24 hours a day is exhausting, he has developed yet another "cold", he coughs up dark green phlegm and i will need to get him some antibiotics tomorrow. we are both exhausted, to tell the truth. the Shingles has caused the need for high level pain meds that make him nuts in the head, they have marked his marvelous back with nasty scars.. that same strong back that has carried a wife, mortgages and four grown children on it.. i cant believe Shingles could have done this to my great husband! i resent the hell out of it, i hate the gasping that Emphysema causes and i detest the ease with which he gets COPD. He was a painting contractor all his life and although he wore the best cartridge masks ( not those little white papers, either!) but the vinyls, Epoxie paints, the enamels that we all can scrub without marring the paint..those are all in his lungs too! did he smoke? sure he did. who didnt in the early 40's, 50's? and are they EVER addictive! we shall either make it out of this or he wont, i dont know. i just needed to TELL someone. sorry. suzan pulsifer suzabells@aol.com

I was recently diagnosed with bronchiecstasis after years of thinking that I suffered from allergies, asthma, and sinus problems.
This summer I realized something was wrong when I returned to Wyoming to spend time with my family and friends. I just had no energy and was always getting winded. I blamed it on the altitude and joked about the toll that age takes on you.
Upon returning home to the New Orleans, LA area, I knew that something was indeed wrong. I couldn't walk without getting winded. Several trips to doctors and lots of tests revealed the diagnosis.
In 1995 I cared for my mother as she died struggling to breath...yes she was indeed hungry for air. My mom smoked for 50 years, quitting cold turkey when her twin sister called to tell her that she had lung cancer. My mom was a wonderfully, energetic woman always taking care of others. It broke my heart to see the physical and emotional change in her as she struggled to breathe. She never gave up..saying a few hours before her death that she had said her goodbyes and was ready to say her hellos.
And here I am...Caucasian, female, over 60, a lifelong non-smoker, who suffered lung damage..pneumonia at age 5...the perfect demographic for sufferers of bronchiecstasis.
It angers me that I have indeed tried to be healthful...an active lifestyle, not smoking, taking care of my body...and now this diagnosis. The weeks after Hurricane Katrina were difficult as I developed a deep lung infection. I was in a strange place having to find a new doctor...4 weeks of prednizone and antibiotics and loving support pulled me through...but all I can think of is that I don't want to die like my momma!!!

My Mom has COPD and has been on oxygen 24/7 for the past three years, she is at level 3; yes, she was a smoker. She also has a nebulizer and a host of drugs. As of September she has also been diagnosed with diabetes--more drugs. Her pulmonary doctor would like Mom to go into a nursing home because he says we cannot provide enough care for her at home. Mom has a health directive and will not be sustained unnaturally--her wishes. She seems to be in more pain with each and every day. My brother lives with Mom, and when he is at work, we have home health care aides. How will I know if I should call in hospice, does her doctor need to make this call? What can be done in the nursing home that cannot be done for my Mom in her own home?

I too have COPD and am only 63 yrs old. I fear what struggling for air upon exertion does to our heart and other organs. I agree that we have to keep up our daily exercise (when able) and know what triggers a relapse or infection. We must make a serious effort every minute of the day to stay healthy. I have so much mucus that I have to expectorate or it becomes infected. Yes, my life has changed alot; but I know it could be worse and try to live each day as well as I can. We must stay positive and educated.

I was just diganosed with copd on nov.18,2005 and am now wondering what this means to my me and my life. I have no clue what this will do or how much worse it will get..I watched my Dad being ttreated for this and I for sure want no part in the way it ends. this is a whole lot scrary to me...

I watched my father suffer and finally die from copd at the age of 59yrs.Nine months later I found out that I had the same disease. Its a horrible disease that has many complications and I do not look forward to going down that same road but the apple never falls far from the tree.

Hi, Dr. Edelman,
I met a woman 50's her who has known of COPD for 5 years. She is stage 3 (severe) on oxygen. She provided a very interesting story that highlights the lack of public appreciation for the disease and the lost opportunities for intervening earlier in the disease when more can be done. Her father died of lung cancer shortly before her diagnosis. COPD was listed as his second diagnosis, but although she worked in a medical field, she told me that she never thought it might apply to her.
She was hospitalized with a COPD exacerbation, in the ICU, learned of her COPD, had her first pulmonary function test, and quit smoking. She stated that before that, although she was medically sophisticated and knew she was short of breath she "just didn't want to know more" or to face the possibility of lung disease. Now she says she wished she knew earlier, lives with oxygen every day, wishing she had quit and learned how to take care of herself better.

I hope ALA can help increase public awareness and break down the barriers that will make it easier for people like this lady to take the first step and get tested with a breathing test for COPD, early enough that they can be diagnosed in stage 1 or 2 (mild to moderate) COPD, when quitting and taking medications helps much more.
I'd be interested to hear suggestions from others on the blog how people could be encouraged to be tested earlier.

Happy blogging!

I started smoking when I was 14 (1948). In 1950 a
doctor told me that I had "smokers heart" -- no
big deal.

In 1961 during an annual physical, the doctor had me
blow in a bilows like affair. He said that I had
reduced lung capacity. But, I could still run and
walk -- what's the problem?

In June 2003, I wound up in the ICU with severe
COPD -- I don't smoke any more!

My Mother was diagnosed with COPD in 2000 SHE suffered horribly everyday to breathe. She smoked for forty years and finally quit after she had a bout of the flu which caused her to develop a severe respitory infection. She started respitory therapy and exercising every day. She still got worse everyday even with all the meds and therapy. She started breaking bones in her back and breaking ribs from coughing so hard. SHE wore a by pap machine almost all day long and told me and my sisters several times she didnt want to live with that thing strapped to her face anymore. She continued to fight to breathe for a year after she stopped smoking and did everything to help get better and nothing made a difference. She was on oxygen all the time. It was the most horrible way to live. I cried everyday watching my mom suffer like that. COPD is the most slow painful death. My mothers death was the most heart wrenching thing I have ever seen in My life. She suffacated to the very end. The Doctors put her on morphine and she still was gasping for air, blood kept filling up and spilling from her mouth and nose ,she was so swollen everywhere. I have nightmares everynight about her death. I hope anyone who smokes that reads this stops ASAP WHAT copd does to the love ones watching the suffering, pain and agony is detrimental for ever. I wish I knew then what I know now. My mom was 60 years old. She died two weeks before her birthday and a week before my three year olds birthday. She finally stopped suffering in March 2004 when she went to Heaven to be with my father Please keep spreading the word about COPD so we can all stop those suffering. lin u

I took care of my Grandmother who had copd and passed away in 1985. It was terrible watching this wonderful person struggle for air. The last 3 years of her life she was on oxygen all of the time. Soon after my grandmother passed, my mother was diagnosed with this disease. Again it was up to myself and my sister to take care of mom. It got so bad that Mom had to be put in a nursing home for her last 11 months. (she was also a bleeder) We couldn't even handle her without hurting her. She had a compression fracture in her spine and two broken ribs from coughing. Mom was a heavy smoker for over 30 years. (Gram too) I also lost my Dad to lung cancer two years before mom passed. It has been a long hard road. Now I am facing a similar path. I have never smoked, but have been told that I have COPD. I've had pneumonia two times this year. (Jan and April) All I have to do is get the sniffles and it causes severe breathing difficulties. What a shame there isn't more public awareness, especially for all of those people that complain because they have to smoke outside now. We didn't ask for this and we try to make the most out of what time we have left.

Hi,
My mother has copd and is on oxygen and a concentrator through the night. She also has a nebuliser and many medications.
She has just been diagnosed with shingles and is suffering badly with it - I wondered if there is anyone out there that has had a similar problem themselves or a loved one and how ddid this affect their well-being.

HI, MY NAME IS JOE I HAVE BEEN LIVING WITH COPD FOR THE PAST TEN YEARS.EACH YEAR I NOTICE THAT I AM GETTING WORSE IT IS A TERIBLE SICKNESS I GOT MINE FROM SMOKING FOR ABOUT FOURTY FIVE YEARS.NOTICE TO YOU SMOKERS PLEASE FOR YOUR OWN GOOD STOP NOW.

I have been diagnosed with Silicosis of the lungs.
For years the doctor said I had COPD, treating me for asthma, etc.. even though I never smoked a day in my life. I got this from NOT wearing mask
while working with clay and ceramics. THis is a warning to all others, please make sure you wear
a mask when working with any thing that you may
inhale. I am on oxgyen and only have use of
thirty percent of my lungs.
The future is not a bright one, nor is there one
for me at I fear... GOD BLESS

i was smoker & hairdresser for 36 years,i learned have copd in 2005, what a change in my life, because i can not do hair any more, i don't no anything else, and get out of breath when i do things, i did quit smoking 6 monts before i found out, thank god. i do what i can, try and ride bike every day, do shoping, light housework, but do a little rest, do little more. i do not cough any more,and very small mucus first thing in morning. i hope i can live to see my gandchildren grow up, im 57 yrs. old, but feel older. untill i got this, i never heard of it, that's sad. i hope some day we can have a cure.

I stumbled onto this website while doing some research. I'm a 4th year dental hygiene student and we are to present cases educating others about diseases or disabilities that effect dental care. I am shocked to know that most people are unaware of COPD, and to be honest I wish I knew more about it. And I will in the next few months learn as much as i can about COPD. My patient yesterday was a hairdresser and smoked for 55years she could barely walk 20 steps without wheezing and hacking. I'm genuinely concerned about her and I truely hope that there is some way to get the message out. Unfortunately in my experience people who smoke don't want to listen to anything and for the most part believe it won't happen to them. I've never smoked, but have worked in a dental office for 13 years and fear that inhaling the chemicals we use everyday cause significant lung problems, and wish i had been better about my mask wearing. I will now be better from this day forward. I thank those of you who have blogged and shared your stories because some of us do listen and care.

One day just walking around,minding my own business,my lungs did not work. I could not breathe.Not a lil wheezing...absolutely nothing.Lasted less than a minute but has happend many times since then. What is happening?

while being prpt for emergecy sugery mt left lung was punctured.now seven muonths later i have ben told i haveemphysema such as interstitial lung disease,pulminary vascuar disease,or a right to left shunt could be present the tems used to me DLCO OVD help!!i dont get it could puncturing my lung have done all this????

My Mom recently passed away at age 55, after suffering from a massive asthma attack. She was placed on life support, three days later we removed her from life support, and she passed away three days after that. I knew she had asthma, she smoked, and had chronic bronchitis, yet her regular Dr. never talked to my Mom about COPD. It was only while I sat in the waiting room in the ICU, crying hysterically like a child, that I read about COPD. I plan to become as active as I can, to tell people about COPD, and what can happen to their loved ones if they dont get help!

My Mother was diagnosed with emphasyema in 1990, she stopped smoking at that moment but the damage was already done, since that time she was also diagnosed with COPD, in late February 2007 she was hospitalized with difficlutles from breathing, she was released to go home and placed on oxygen, 1 week later she was back in the hospital with severe difficulties breathing and the Dr. told us she had bad Co2 in her system, she is still hospitalized today but refuses to be placed in the by-pap machine and does not want to go for re-hab once released, she also has very little appetite and doesn't want to eat, my mom has 9 children that are very concerned about her mental state, we are at a loss on what to do for her to get her in re-hab, this is a very difficult thing to see your parent slowly lose their livelyhood, we too have learned more about these diseases through research and want to learn more.

My Mom was diagnosed with COPD in 2002, she was in and out of the hospital and ER often. She was put on a respirator 3 different times the Doctors continuously told us she wouldn't make it, and each time she blew us all away and survived. But her quality of life dwindled quickly.She was on oxygen 24/7. Each time she got sick, her recovery rate was slower and less. After the third time she went to her Doctor and asked that she does not get put on life support of any kind. We all respected her decision, as her quality of life was so low and because we could see how much she struggled to recover the last time. A few months later my mom ran into a lady that had had a lung transplant, they sat and talked, and after that she was raring to go and get herself on that list. She had just finished the second bout of tests and screening and whatnot. Three weeks later she called my sister saying she didn't feel well, so she took her to the ER, she was put into ICU and onto the By-pap machine(because a respirator was against her wishes) after 2 days she had so much Co2 in her systen she in a coma, it had poisoned her so much that her body shut down. We were faced with letting her go, because anything above what they were doing would have been against her wishes. The hospital staff allowed us to keep her alive until my dad and sister and brother could all travel home to say good bye! It was absolutely the most tragic thing that I (any of us) have ever been faced with. We all knew that she was sick and that it would happen, but there is nothing you can do to prepare your self for the death of your mother.

In 2003 I developed SOB during exercise. I had a CT that found widespread bronchiecstasis. I have never been a smoker, and no one in my family smokes, and I have no occupational exposure to smoke or particulates. I live in an isolated rural area near the sea where there are very few, if any, air pollutants, other than pollen. However, when I was younger, I was tear-gassed twice during student rallies. Are there any studies on the long-term pulmonary effects of tear gas? Is that exposure possibly causative?
Kind thanks. Great website and blog!

Hello Dr.Edelman

I am an ex smoker living in Canada with severe lung disease. I quit smoking seven years ago and still developed enough of a problem that I have a tracheotomy to help me breathe now. My breathing has gotten so bad that I am suffering from chest pains as well. I also weigh in at 245lbs at 5'7" thats not good. So to all of you who are still smoking quit while you can. In my case it did not do much for my health prospects, but for most of you your health will improve. My blood pressure is stable. Dr. Edelman I am just wondering what I can do to get rid of the chest pains besides the obvious which is losing weight. I had a stress test done last summer, and it was negative. I am at my wits end, any suggestions?

Yves
Ottawa, Canada

On Thursday, April 26th, 2007, Ontario, Canada my Mom passed away from COPD after we spend 5 straight days by her hospital beside watching her suffer with this horrible disease. She went into the hospital with pneumonia and chronic emphesyma, but we never thought we would be told she is dying and there is nothing we can do - 5 days later she died from COPD at the age of 72. Yes, she was a heavy smoker and had puffers and diabetes, but we did not know she had COPD. When the doctor told me and my brothers we did not even know what it meant.I am still reliving the horrors of watching her grasping for her breathe and I would not wish the way she died on anyone. It was heartwrenching watching her try to rip the oxygen mask off and tell us to let her go or help me. She ended up with thrash on her tongue from the steriods and 3 weeks later I still cannot believe she is gone. If anyone who smokes and wants to quit, seeing a person go through the agony of COPD and trying to get your last breathe, you certainly will not want to smoke again. I only wish there was a cure or I had a magic wand, because we all felt so helpless. God Bless all that have this terrible disease.

My husband was told nearly ten years ago at his first ER visit for difficulty breathing,that he had early signs of emphesema and that he needed to quit smoking. To this day he claims he never heard the nurse tell him that, and never quit.

He and his first wife smoked like chimneys. He now has full blown COPD with about 30% lung function. Landed in the hospital last fall for a week (acute brochitis). He quit smoking for six months while he was at home recouperating. He returned to work in March and has slowly begun smoking again. No pack a day, somedays none at all but bums them periodically.

It totally infuriates me. I had surgery two days after he got out of the hospital and had to have my son come home to take care of both of us. My husband refused to stop smoking at his ER visit in the summer and I kept gently urging him to since I would need him healthy when I went in for surgery. I am now and have been doing everything for him including taking care of our large rural home. I am getting to where I am depressed, angry, tired and feeling used. I run around with my head cut off doing yard work and housework after working all day and he can barely move from one room to the other at times. But manages to go outside and light up. I arrange for prescriptions, dr. visits and you all know the rest. All because he refused to consider anyone else when he lit up then and especially now. I have tried not saying anything, I have tried talking like an adult with him and he has seen me in a rage and in tears over this. Knowing that it will not get better health wise, emotional wise or financially I am tired out. He will eventually have to quit working, he will then have no life insurance because he only has the one thru work as he never took out a policy before his illness, we would never be able to afford one now.

Maybe I'm just acting selfish right now but how can someone see how much of what they are doing effects the ones they love and ignore it. If he had not stopped for so long I would agree that he was just one of the ones that couldn't stop but that is not true. Not when he can go six months and now even four days without one, then lights up and can't breath for days. Or uses his nebulizer and then goes and has one. I don't freakin get it. If this continues I am going to need a psychologist or psychiatrist cause I am going to loose it. HELP!!!!!!!!!!!!

At 52, I too have Severe COPD. I have been on oxygen for about 8 months and it was only by accident I found out my O2 levels were very low. Even now with O2 my levels are at 93 with and about 88 without. I had a stent at 44 and a triple bypass at 46 and several surgeries as the wires broke and I have no sternum because I got a staph infection in my chest. I was diagnosed as a diabetic also at 46 and had a brain tumour out last year. The point is I still travel, have fun with my family and friends and make the most out of each and every day. Don't sit around. I feel much better when I am doing something. I too am a smoker of 40 years, since I was 12. I tried everythign, and finally found chantix took me from 31/2packs a day to 1/2 pack a day. I am going back on Chantix in two to finish them off once and for all. This way, though unreversible I will still extend my life and the quality of my life for a few years more. I have found that taking methadone for pain was the best thing that happend to me. It does not make me goofy, as I hate drugs, but it does make me able to live my life with much higher quality!! Live life as best as you can and be happy you are still here!!! I thank god every morning for waking up. Now 1, 2, 3 and get up and go!!!!!!! Maxine
P.S. If anyone has a traveling type of O2 machine that can be taken on a plane I need one desperately!!