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hi im at 81% so that means one more notch and im copd? i thought 80 and above was in normal range. when i had my pft done no post testing i was told your fine like i have nothing to worry about being a x smoker for 40+ yrs
First of all, congratulations on being an ex-smoker! You don't say how old you are, but if you smoked for over 40 years and have quit and you now have 81% lung function, that's pretty good. That range of 50-80% is quite a large range and takes in a wide variety of limitations (or not), so don't be overly concerned about being considered "moderate" if you're on the very high end of that range.
Here are some benchmarks to tell how you're doing: If you can keep up with others your age, you don't have a persistent cough producing sputum on most days, and don't lose time at work due to breathing problems, it sounds like you're doing alright. Of course, your doctor knows you best and sees you in person, and he / she has the advice you should follow. You didn't say if you have a pulmonary doctor or not, but if you have any of the above symptoms, you might ask for a referral.
With your smoking history, though, you should probably have a PF screen (spirometry -- just a quick and very simple lung function test) regularly, just to know keep track of how your lungs are doing. You should know your lung function numbers just like a diabetic knows their sugar levels or like we should all know our cholesterol numbers.
If you're not smoking and staying away from lung infections, you giving yourself a good chance to be stable for a long time.
Thanks for your comment. I hope I answered your question and I hope this helps.
Jane.
ok jane, on my spirometry reading which wasn't a full test, just actual and predicted no post was done, on the paper above ea of three tries it says normal, so at 81% normal how can i fly from normal, skip mild and on to moderate? i did ask doctor if i should see a pulmonary doctor he said no, so if im that close to 80 or 79 which is moderate then i do have copd? i was puzzled when my ins co called me to ask if i wanted to sign up for conditon management for my copd, i was flabergasted, called ea doctors office i had been to echo test etc and no one knew.nothing noted about it.
i thought thats the whole point of getting an early diagnosis, to slow down the progress or wait till symptoms start? right now i feel great no coughing, no wheezing, trying to drop the lbs
Jane? i think what worries me and most others is the lack of money for research, seems like all going for prevention, stop smoking which is great but the ones who have copd can just trickle on, copd is at the very bottom .HIV being top of list for research funds that is also a lifestyle choice in some instances same as smokers, however some people got aids thru no fault of their own same with smoking and copd.
even the ads on tv for sprivia makes it look like a minor inconvience, most of us including myself never heard of copd or what it was, we knew chronic bronchitis, emphysema, asthma that was it
Hi again, Anonymous,
Thank you for your questions and for sharing a bit about yourself. I'm afraid you're right about your weight hindering your breathing. At 5' 3 1/2" and 244 lbs., you are carrying extra weight that not only gets in the way of your diaphragm (your main muscle of breathing) working effectively but makes moving around harder than if you weighed less. So, in order to make your breathing as easy as possible, you should probably get rid of some of those extra pounds.
I hope you do live to 90! Why not be optimistic? 
Chances are, your numbers will not go up significantly, if at all. That's just the nature of this beast. But by quitting smoking you slowed down progression -- big time. If you go to this page on my website http://www.breathingbetterlivingwell.com/no_butts/index.php and click on "Is it too late to quit?" you will find a fascinating picture of how quitting smoking slows the progression of COPD. This is the Fletcher-Peto curve and it really explains it well.
I hope this helps.
Jane.
Okay...I think in regards to the categories in my article, they're looking at 100% and above as normal and anything from 80-100% as mild COPD. Take a breath, stay calm, and do remember that numbers don't tell the whole story. I can have five different patients with 35% lung function and they all have a different level of limitations. As you indicate, you don't have any symptoms. That's good news! Now, having said that, many docs consider 80-100% normal. According to the parameters I cite in my article, you do have mild COPD, and that's most likely why your insurance company sent you that. And I say good for them! They see the value in early detection and intervention. You should probably say, "Yes, send me all the information you have." In doing so, you'll be way ahead of the game. You are SO right about the lack of research for COPD! You hit the nail on the head. I wrote a couple articles on this site a while back for another aspect of prevention and early detection -- about screening for disease. In my research I learned a lot about the cost of testing for other diseases, and found huge inequities in that regard. Again, I hope this helped you understand a bit more about this. Thanks very much for your questions and comments, and best wishes to you!
wel my father is in advanced stages hes been in and out of the va hospital lots of times they told me 22 years ago hes only got 10yrs left, hes a fighter and still with us because of his willingnss not to give up. hes been on sterioids, c pap machine,oxygen througout the night id given up my job in wa state to be here with him in ohio. its been a struggle,he cant get on the floor to play with his grandson without losing his breath. scary thing when you cant breathe. but we are still struggling to keep him comforable. tryin to support my family after quitting my job and keeping him stable at the same time. some dotors arent trained well enough to deal with these patients, when we went to the hospital in canton the nurses were rough and and inexperienced with paitents with copd. what else can we as a family to expect to happen, hes feeling more fatigued, this morning told us kids that hes tired of fighting for 22 years...... thankyou just wondering in magnolia,ohio
Hello Alan,
Thank you for your question. First of all, good for your dad for outliving his life expectancy by more than two times what they suggested! Next, you should be commended for your devotion to him in quitting your job and moving across the country to be near him. You will never regret this time you have together.
From what you say, it sounds like you feel he could be getting better care, and I'm truly sorry that he has not always been treated compassionately by medical professionals. That should never happen. If you're really not sure how severe he is, and you want to know more about what to expect, I would suggest your dad have at least one appointment with a good pulmonary specialist. This would at least give him and your family more peace of mind to know what to expect from here on. Here's a tip: If you're ever wondering if a doctor is a good fit, ask this question of a health care professional -- "Would you send your mother or father to this doctor?"
I hope this helps, even if just a little bit. Please don't hesitate to ask more questions. This site, Health Central, is great, and there are also helpful and compassionate folks at my website, http://www.breathingbetterlivingwell.com
Best regards,
Jane Martin
Hello Allen,
Your dad sounds pretty much the same as my mom. She is presently on steroids and has had a c-pap for years. She just recently was placed on oxygen that she needs/uses 24/7 so she can feel like she's getting enough air. I am taking a family medical leave to stay home with her...she has moved in with us. I know your dad gets tired, as does my mom, but the fact that you have been willing to make huge changes in your life to be there to help your dad...it has made and will continue to make such a positive impact in your dad's life. It's hard to watch this happen to our loved ones and frustrating not to be able to fix it. My mom is fortunate to have a very good doctor. Your dad deserves to be treated with compassion and kindness and it saddens me when I hear of a person in the medical field that is lacking those qualities... Be your dads spoke person..It's okay to ask for another docter... Allen, thank you for sharing as when I read it ..It made me feel l'm not alone...I'm glad I came upon this site. Best of Luck to you and your family... You're in my thoughts and prayers
Dear Jane,
My name is Helen, I just wanted to thank you for everything you do for our spirits and morale on this website.
I knew something was seriously wrong with me, I watched my mother pass almost 25 years ago with emphysema. They didn't call it copd back then that I can remember anyway.
They didn't have much to offer her other than oxygen and when she got really bad, she was able to get breathing treatments of some sort,I don't remember what it was now it's been to long.
I had several fears that kept me from going to the Dr when I should have, the biggest fear I had was how I was going to be treated by the Dr's and medical community.
I saw first hand how my mother was treated like a second class citizen, and the second biggest was, not knowing I could be helped with meds and pulmonary rehab.
They have made all the difference in the world to me, Not to mention I learned not all Dr's treat you that way.
I couldn't ask for a more caring and compassionate Dr,she let me know she couldn't reverse my copd or even stop it, but if I do the things she tells me to do like,eat healthy,take my meds, and go to pulmonary rehab I could and would have a better chance at being happy and more importantly LIVING!!!
I was still scared because it is what it is, even tho you know whats wrong with you isn't good, you don't need a Dr to tell you, you can't breath.
After all the test and my visit to the Dr to discuss the results, it wasn't until I actually saw the numbers and heard the words very sever copd did it really hit me.
Like I said, my Dr was great, but you then realize your world has just been turned upside down and my mind was for a lack of a better word, was in a cloud.
I came home feeling sad,scared and even mad at myself for doing this to my one and only body, I wanted to learn everything I could so I googled copd and that's where I found this wonderful site.
I couldn't stop reading, by the time I was done, I really had faith that no matter how bad my numbers were, they are just numbers and there is still alot of living I can do.
So I just wanted to let you know how much this has helped me and I know lots of others as well.
Once again, thank-you for all you do.
GOD BLESS YOU!!!
Helen
Dear Helen,
Thank you for your note. What I do here at Health Central, on my own website, and in my books, is a labor of love. I didn't plan on having this life, but along the way....guess what? Things happen that we don't plan on!
If you want, you can see what I'm talking about in a two-part story I wrote for Health Central some time ago, titled "But....I Didn't Order This Life."
Anyway, as a result of the path I did find myself on, I've been shown a need and given a job to do - and that job is to do the best I can to write about COPD and other lung disease, showing people that they can go on to live a good life. I also work hard to assure them that if they smoked (and not all people with lung disease have), they are not bad people. They are not second class citizens.
I'm thrilled to hear that you've found a wonderful doctor who is kind and understanding and respects you. That's my hope for every person with COPD.
Thanks again, Helen, for taking the time to share your thoughts and for helping me see again that this is important work.
I invite you visit my website, especially the Community and Stories pages. I think you'll find something familiar and encouraging.
My best,
Jane
Jane M. Martin, Director of Breathing Better Living Well
http://www.breathingbetterlivingwell.com
I have been diagnosed with the "end stage" of emphysemia and have been given 6 months to live, however I have not seen a pulmonary specialist or have not had any tests done. My Dr. is a general practioner. I have been reading the comments and have none of the "severe" problems with breathing, however I do get out of breath. I am a smoker of thirty plus years but trying to quit. I have 5 cigarettes a day now. I am weaning myself off them. I have my last lung x-ray on cd, should I have my dr refer me to a pulmonary specialist? Cynthia
finally
someone who talks english plain & SIMPLE
well done
billy from england
not really but very tired....been up most of the night worrying when my Dr told me I had end stage copd....and by reading your posting on copd feel more like stage 2 to 3 at worst... looking to keep reading your postings tonight was long reading about copd and very depressing. Hoping to find you postings again as this was my first. need your help and very nervous from what my dr has told me.... Please keep in touch soon! A depressed 54 year old but feeling a bit better and so thanks!!!!!!!!!!!!!!!!!!!
Dear Depressed,
Oh my, I can see why you're feeling worried and sleepless after being told this by your doctor. That's very understandable. The diagnosis of "end stage" can sound so bad, and that's exactly why I wrote this series -- to clarify some things and also to let people know that there can still be a lot of good life after that diagnosis!
I'm glad you're not feeling as bad as the numbers seem to say you should! Remember that to a certain extent, numbers are just numbers. They do not dictate how you feel, how you breathe, or what you are able to do. The numbers are only one aspect of the total picture. And with information and a positive attitude, you'll have a much brighter future.
It's good news that you're seeking information and support! Please keep on reading. I've written a lot about how you can be the best you can possibly be and live a good life. There is so much information out there and a lot to learn. Make sure you have a good doctor and get into pulmonary rehab if at all possible. Learn all you can from this website and also check out my site where there is an entire team of people with COPD, some with what technically could be called "end stage." They are ready to answer your questions and help you make your way through this!
Thanks for you note, and hang in there. You can do this!
Jane
http://www.breathingbetterlivingwell.com
You are providing a great service to COPD patients, Jane. It is appreciated.
I was diagnosed at end stage COPD in 1999 and told by the doctor to try and cut down to 18 cigarettes from 25 to 30 cigarettes a day. I can't help thinking, on reflection, that he was a smoker. I wasn't prescribed any inhalers and knew nothing about the disease. I joined EFFORTS in 2001, marched into the doc's surgery shortly afterwards and requested inhalers so that I could breathe a little better. :) I began to learn as much as I could, but did not stop smoking till May 2003 when I was being rushed to hospital barely breathing.
I became a gym rat, and am now a great advocate for cardio exercise for at least 30 minutes every day. My FEV1 is now 21%, and last October I was finally granted the use of supplementary 02 by the National Health Service in the UK.
My hope is to drop dead mid stride (not in front of a truck) with my last thoughts being that 'up until now, I was really enjoying myself.' :)
Hello Ann,
Wow, you really got in there an advocated for yourself to make things better. Bravo! Keep on learning all you can, keep on moving and you will squeeze every bit of joy and zest out of this life.
I can tell you've got a great sense of humor, that that certainly goes a long way in living, smiling and laughing with COPD.
Thank you for your comment, be in touch, and I wish you all the best!
Jane.
http://www.breathingbetterlivingwell.com
I like that word, gym rat. never herd of it. I found out i have emphysema ( ct scan for tyroid, found emphysema by accident) I was crushed. i'm 41. smoked half a pack for 13 years. Lung dr. told me my emphysema was not caused by smoking or the gene alpha 1. i was born a pre-mee baby. 2 pounds 3 ounces. with asthma. i think of the under developed lungs, that could of caused it but not sure. always depreassed, i think i should join a gym and dump my boyfriend that smokes, he smokes outside but when stupid drunk he smokes in the house.
This response is to allmymarbles. I actually work out for longer than thirty minutes a day - 30 minutes is minimum cardio work out [doing something that will raise the heart rate, such as walking, marching on the spot, using a stat bike for instance.] I also use dumbbell weights and exercise my upper body one day and then legs the next day. I have now been given supplementary oxygen so there is no reason for me not to push myself to be as fit as possible. If you google 'exercise for COPD patients' you will find many helpful sites.
Don't let this disease define who you are! Love - Ann
Dear Allmymarbles,
It's hard to understand how in the world you can exercise with a low lung function, but once you learn how, you're on your way. I work in Pulmonary Rehab and we see quite a few people who begin to exercise on their own, overdo it, get really short of breath and / or sore, become discouraged, and then quit. And of course a person would quit if that happened! It's scary!
If you can get into a pulmonary rehab program where trained staff can show you the right way to exercise for your level, monitor your oxygen, heart rate and blood pressure while you're doing it, and then suggest modifications to your exercise if what you're doing is not working...Definitely, I suggest that you go!
Good luck,
Jane.
http://www.breathingbetterlivingwell.com
i have had copd for 2years i have keept it under control but iam worried all the time i dont sleep alot i dont go out any where i have ni one 2 talk to about my copd i am glad i found this site as now i dont feel alone it not nice thing 2 get i am still trying 2 stop smoking so any tips would b appreciated thank you for listerning
Hello Margaret,
Oh my, although I can understand why you worry when you have a serious illness, I can tell you that it's not good for you to worry so much and miss out on sleep! Learning all you can about COPD from solid sources like here on Health Central and from people just like you who are successfully living with it can be a huge help. This website is a wealth of information.
You mention that you don't go out a lot, and that's understandable when you're short of breath. However, you have to work at keeping yourself out there, and not be so isolated. Isolation is a major problem with COPD but it doesn't have to be that way.
I'm really glad you found that site. There are millions of people with COPD, over 20 million, in fact, and so you are definitely not alone!
I suggest you keep on seeking information and support here and also from a local Better Breathers' Club and / or pulmonary rehab program if they are in your area, and also from online lung information and support sites.
You can find a list of links and also a community forum on my site at http://www.breathingbetterlivingwell.com
Good luck, Margaret! You can do this! We're here to help.
Jane M. Martin
I was told by my Doc. my COPD, or emphyzema was bad, severe. I still smoked. I had heart attack, still smoked. Now I am in different part of country living,and seeing a lung Doc. My FEV1 is 24% I knew it was bad, but dont want to believe it is, THAT bad, so I just cut down on Cig. I am so tired of gasping for air, trying to take in a big breath and yet cant feel the air in my lungs. Its as if I am only taking half breaths. I will have close calls, thats what I call it, when I feel like I will pass-out before I can get to my nebulizer machine. My body will sting and my hands and arms start going numb. YES it scares me, but I smoke. I wish organizations, like heart association, HAD a boot camp,, I need intervention.
I have tried chantix/wellebutrin/nicorette/my children crying my Grandchildren. The cig. always wins. I have oxygen for at night, but am using in day time too. I am putting my husband through hell, with emergency hospital trips, and my physical limitations. My life is so SAD, and I feel so helpless, and so tired. Can someone be my strength, or help me to be stronger. I just dont know what to do.
I HAVE COPD ITS SOMETIMES VERY HARD 2 COPE WITH LIKE VIKIE AN JANE I DONT GET OUT MUCH AN 2 TOP IT ALL MY HUSBAND HAS NOW BEEN TOLD HE HAS EMPHERSEMEA SO NOW BOTH OF US SMOKEING DECEASE SO NOW WE JUST LOOK AFTR EACH OTHERE WE ARE CURRENTLEY TRYING 2 GET A BUNGLOW AS WE LIVE IN A FIRST FLOOR FLAT WITH NO LIFT SO U CAN SEE WHAT TROUBLE WE HAVE ON A DAILY BASIE WITH SHOPPING AN TRYING 2 GET UP STAIRS WITH SHOPPING IS GETTING 2 MUCH 4 US NOW I WOULD LOVE A GARDEN 2 SIT IN INSTEAD OF BEING STUCK IN THIS FLAT SORRY 2 MOAN BUT I GET SO FED UP AN DEPRESSED ANY WAY ITS GOOD 2 KNOW I AM ALONE THANK YOU FOR UR COMMENT THEY MEAN ALOT 2 ME THANK YOU
Vickymom, Maybe you would have better luck with smoking if you did not quit cold turkey. Try cutting down. That is what I am doing. I have reduced my smoking from about 28 cigarettes a day to seven or eight so far. The cutting back has been slow, but I have not relapsed. I have gotten to the point I don't enjoy smoking as much as I used to so I guess I am close to quitting altogether. By the way, in cutting down slowly I have not gained any weight.
I am 55 years of age, am trying to quit smoking, am on oxygen, 3lmp and 24/7, sleep with a bipap machine and was diagnosed with COPD two years ago (26 % lung capacity) along with CHF. I had symtoms for many years before. I didn't have any insurance during that ten years span but I think I could safely say that the COPD was developing unchecked. So, I have said all of this to ask the following questions. My pulmonolgist says that my numbers are good and don't worry. My cardiologist says the COPD is very severe and my GP just goes along with the other two doctors. I am confused in that if my numbers are so good, why do I feel so bad? Some days I am just too tired and weak to breath and so I put on my Bi-pap to help me along. I do suffer from depression and have most of my life. They keep changing my med and/or increase the dosage, or just add another antidepressant to the mix. None of this has worked. I am wondering if I am just being lazy or something. It isn't that I don't want to do things because I certain do. I miss my flower gardening, sewing, yard work and so on. I had better also tell you that I fell in 2003 and broke my back and am methadone and percocet to manage the pain and will probably have to stay on it since the damages from the fall aren't going to get better and I just can't hardly even walk without the pain meds. Back to the subject at hand. Depression? I am at the end of my rope. Physically? I just about don't care anymore. I truly feel as though I am trying to shut the door after that horse has already gone.
Next question, why is it that the medical community treats you as though you deserve to have COPD as punishment for smoking? The doctor and nurses have made that very clear to me by their attitude and comments. Now I am feeling as though I should just buck up and accept my consequenses of my choices and quit being such a baby about this COPD thing. Why would I want to fight back for a life filled with condemnation when what they say is true? Or, for a life that I am unable to do the things I love to do and bring some joy into my life? These are all questions that I just do not have an answer for but have kept pushing forward trying to accept my limitations and/or having to do things differently but I am running out of steam fast. I absolutely hate where I am but I just don't know what to do anymore and am just too tired to make myself think of things.
HELLO ANNEYMAY
i KNOW WHAT YOU MEAN!! I wanna say ok ok I am sorry I smoke!. but dont let me die. BUT what I do say is I am not here for a lecture but help. I also told a doctor the other day that he was wrong not to have kept me better informed on what the no."s meant. I am at end stage 24%. I take a WHOLE bunch of medicine for CHF heart, diabetic, enphezema, chronic bronchitis.and of course high blood pressure.
I day I will feel so GREAT! 3 days ago I was in the clouds, seeing all the flowers blooming. Yesterday was good too. THEB today I had a Doc. appointment with a new doc. My husband and me are 700miles away from home so he can work. MY Doc wouldn"t give me any more refills because I hadnt see him in 8 months. So I go to this doctor today and all she did was say TEST TEST I was just in hospital 3 months ago. I told her, I see a lung doctor every 2wks to 4wks. I am in a reasearch study so they keep me doing heart test and blood, breathing and so on. BUT she says she didnt want to get hospital records or lung doctors. She wants her own tests.LOL I just told her to milk somebody else medicare, and walked out. I am trying another doctor next week.
The only problem I have is My Cymbalta and Clorazepate is out, I have all other meds/ I THINK we with depression, should not skip our anti-depressants. I feel more alive not taking it, BUT more down when I get upset. This site helps me sooo much just being able to talk about it.
It really is a bummer about your doctor situation. I do want to point out to you that just stopping your antidepressants is a very bad thing to do. You will have a couple of good days following after you stop taking them but then, because you didn't wean yourself off of them it throws you into a deep depression. You really do need to talk with your doctor about not taking them anymore.
I've been having a pretty hard time of it lately since my lungs are not able to expel enough of the carbon dioxide out of my system. Therefore I am suffering with headaches, especially in the morning if I don't have my bi-pap machine on. I can be up for a little while but then I have to get back on the machine to stop the headache. It is a very scary thought that the carbon dioxide is building up in my system. I think it is toxic after awhile isn't it?
I really hope that you get the meds you need and a doctor that hasn't got the brains that God gave a goose.
It really is a bummer about your doctor situation. I do want to point out to you that just stopping your antidepressants is a very bad thing to do. You will have a couple of good days following after you stop taking them but then, because you didn't wean yourself off of them it throws you into a deep depression. You really do need to talk with your doctor about not taking them anymore.
I've been having a pretty hard time of it lately since my lungs are not able to expel enough of the carbon dioxide out of my system. Therefore I am suffering with headaches, especially in the morning if I don't have my bi-pap machine on. I can be up for a little while but then I have to get back on the machine to stop the headache. It is a very scary thought that the carbon dioxide is building up in my system. I think it is toxic after awhile isn't it?
I really hope that you get the meds you need and a doctor that hasn't got the brains that God gave a goose.
I am 75 now. Was diagnosed with COPD, emphysema, in 1988 (22 yrs ago), six to eight months after the Lord helped me quit smoking from a 2 pack a day habit. I quit because smoking was keeping me out of church, where I loved to worship with fellow believers. I could not sit there for 60 to 90 minutes without a cigarette, and the church services meant more to me than the cigarettes. I told my husband not to buy me anymore cigarettes, and then, with the half a carton I had left, I cut them in half with scissors. Less nicotine per smoke, and less enjoyment. My lung function was about 35% at that time.
My sister was diagnosed almost a year later. She tried to keep smoking; was in and out of intensive care a lot, had to quit her successful business and move to no stairs apt. in another city where our mom could take care of her. She only lived for about 7 years. I am still here after 22 years, and, although I have Very Severe (or end stage emphysema) I am doing better than most; they say I could live at this level (under 30%) for years. Very little physical ability, but now they say some of my weakness caused by other diseases--low thyroid and narcolepsi, where I don't get the restorative kind of sleep, mostly REM, which even strikes me suddenly during the day. I have 50% heart blockage, so might be just as likely to eventually go from that instead of respiratory failure!
Does is sound like my quality of life would be poor? Not really, athough all of the medical care sometimes a hassle. Since I was put on fulltime oxygen, I have written a series of three Christian fiction books which have been accepted by a publisher. Should be out by Thanksgiving. While I am waiting, I am now writing a non-fiction book. Both of my recently diagnosed diseases cause some mental confusion and memory problems, as well as extreme fatigue. But I am planning on having a video made for Christian women's groups, to play instead of a talk in person, and if I am able, will go for Author's Book Signings.
This site has shown me that there is a very great variation of how individual people do at certain stages; but one thing I see is that most of the most miserable and depressed commenters share two possible differences (1) say they are still smoking, and (2) don't say anything about faith in Christ, which makes me unafraid to die, but keeps my enjoyment of life going. I hope you are not offended. Would love to receive a response. Marcie
Not offended at all. My relationship with the Lord is an important part of my everyday life. As for dying? I am not afraid. I pray for help to quit smoking but so far nothing, so I keep trying on my own, without much success. How wonderful that you began writing, so did I, but mine is an autobiography(biography? I never can get those straight) of my life. It was suggested I do it when I was volunteering for an organization that helps people get their budgets in order. I wrote for a video to be done to show that even though your life is difficult, taking hold of your money situation gives you some self power and discipline. That should be out next month if they hold to the timeline. As for my COPD and CHF I am pretty much resigned to doing what I can instead of concentrating on what I can't. I do feel much better having that attitude since it disallows self belittlement. After having gone through so much confusion and fear I figured out that it isn't worth it to ruin the time I have left whatever that may be. Concentrating on the positive is what is helpful. It is difficult at times to do that but attitude is a choice that we can make. I am much happier even on the days that I don't feel that well. Hope I answered your question.
Anneymay
Anneymay, I was so pleased to get your response to my comments, especially hearing of your relationship with the Lord and your upbeat attitude. I agree that it makes so much difference in how we do. Also, I see we have some things in common, like interest in writing.
I did not do an autobiography (which is story of one's own life, while a biography is the story of someone else's life) because it would be depressing for me and my family members to go over, again, some of the most troubling times. What I did do though was to use quite a bit of my own experiences, feelings, observations along with many of other people I have known, and that way got quite a bit of the better times or lessons learned into the lives of my made-up characters.
Feel free to write me anytime at act.tion@hotmail.com. Marcie
HELLO, I AM NEW ON THIS SITE BUT YOU NEED TO TRY TO PRESS ALL YOUR OLD AIR OUT OF YOUR LUNGS BY BREATHING IN THROUGH YOUR NOSE, THAN LAY A HAND ON YOU BELLY, PUT YOUR LIPS LIKE YOU WANT TO WHISTLE.AND PRESS ALL YOUR OLD AIR OUT BY MOUTH. DO IT SLOW AND REPEAT A FEW TIMES.
BREATH IN THROUGH YOUR NOSE, BREATH OUT THROUGH YOUR MOUTH
HOPE THAT HELPS
KARIN
sorry to hear about the attuides comming from the doctor and the staff, i feel you have to have some luck finding some doctors and nurses that truly care. i too have copd and when i had an exerbasion i not only didn't know what i had , i knew absoutly nothing about it! when i went back to my pcp, his response was, he was supprised it took that long before i had one. ( thanks doctor for telling me about copd and what will or could happen and prvention ) i think it's time for me too, to find a new doctor. i did find some nurses that did care and were concerned when i was in the hospital. your not alone in this thing, just know theres alot of people like us and not everyone is hardend . Bob
This was very good reading i am young and have copd it has been hard not working.Ido work out and ride a lot of bike.
Thank you
willie
Hi,
I hope I have found the right place for this; if not, my apologies. My mom is 70 and has been in *end stage* for about a year. Her lung capacity is 5-10%. She started hospitalizations about once every three weeks in January. She was hospitalized March 13, then went to rehab, and was readmitted to the hospital yesterday morning. She has severe cellulitis, MRSA, leg wounds, and is on bi pap. She cannot tolerate canula now. Doctors/nurses are telling me that if she cannot tolerate bi pap and/or continues to complain that she can't breathe, they will intubate. Her o2 on bipap is 97%, but her co2 is at about 80% and hasn't changed in the last 24 hours (5 blood gases drawn). She is in NJ and I am in CA. I know no one can predict the *when*, but can anyone tell me what questions to ask and what to do if she is intubated. I hold her health care POA. She has always bounced back before, but not this time. I'm frightened, reigned, anxious--the whole spectrum. Any advice would be greatly appreciated. Leni
Dear Leni,
It sounds as if your mother is extremely ill.
I'm a bit confused about the lung capacity being at 5-10%. There are many lung function numbers that come from the full test. The one we talk most often of is the FEV1 which is the volume of air blown out in the first second of exhaling. It is unusual for a patient to tolerate being below about 12% because that, or anything less than that makes it difficult for the body to function at all. So you might ask what that 5-10% is measuring specifically and what that doctor considers for a prognosis with that number.
You might also ask that if they do intubate your mother and put her on a ventilator, do they expect her to recover from this episode and come off the ventilator? I know they cannot predict, but you might ask what is reasonable to expect.
Finally, your mother has several other serious health issues and those can compound her severe respiratory status. Are those new developments or has she had them for some time?
You're far away, but you might also ask the doctor or the nurse that if this was their mother, would they make plans to travel to be at her side?
Leni, I'm so sorry I could not be of more help. Blessings to you and your mother in this difficult situation.
Jane.
Dear Leni
My name is Willie my lev at 28% not good for 52 years old.My dad had the samething he was at 10% when he passed it was hard even today its been 5 years.He was 67 still young.just make they as comfortable as you can i am not a doctor when your lev get that low its hard .please feel free to call .I would like talk to you.
GOD BLESS
WILLIE
Hi Jane,
Please don't apologize; you have been very helpful. She can't even blow into a spirometer, hence the estimated guess of lung function. She has been like this for almost a year, with all the contributing factors. The prognosis is that if they vent, she will not come off. My mom has always been adamant about heroic measures; today for the first time she is mulling over a DNR. I think now that it has been explained to her that if she vents, the decision will then become mine as her POA, she is trying to decide between herself and me. I'm told the next 24 hours will be critical; she will either ger better or worse, but won't stay the same, which confuses me. Tomorrow I will actively make decisions about going unless there is a turn fpr the worse sooner. Thank you for telling me some of the questions to ask at this very late stage; it helps me to hold on and remain knowledgable so I can do the right thing, whatever that is. <wobbly grin>
Thank you for having this message board; all members will be in my prayers.
Leni
Hi Willie,
Thamk you for resonding with so much compassion. I'm very sorry to hear your situation. You stood in my shoes with your dad and I'm sure you did everything right. Just hearing from you has given me strength to go on; I thank you for that. I wish I could return the favor; you will be especially in my prayers. You have the same name as my father who passed in 1998--I won't forget you or your compassion. I would love to talk to you too; is it allowed to post phonme numbers here? If so, post yours and I will get in contact.
May G-d bless you and keep you, and give you peace.
Leni
Dear Leni, I know how hard this is for you. I've lost both parents to this and now at 53 yrs old I have COPD. In 2008 they told me I had 22% lung function left, will be having another PFT in July and then a CT scan to see if I may be a good candidate for a lung reduction or transplant. My father passed away in hospice in 1999 but my mother only a few years back. Now she had made it very clear to all three of us children that if she was put on any life saving machines that she could never to taken off of that we were to let her go. She made us promise several times through the last couple years making sure we could all keep that promise we had given her. The time came and she continued to get worse and then came the, sorry for my lack of wording here(not the intubation but the c-pap(am I saying that right?). We stuck to our words and on Tues morning had the nurse shut it off.....we all stayed by her bedside until her soul left her body. It was hard but it was what she wished and it is what I want for myself too. Hope this helped, as much as it can anyway. (((hugs))))
Jody,
Thank you so much for sharing your story and I am so sorry for your personal losses. I have two autoimmune diseases and polyneuropathy, but none are fatal, just debilitaing. My mom's wishes weren't so clear. I swear I don't know what happened to her; it was almost like a near death experience. Since the time I ran to her and came home, she has just gotten better and better. She has lost a lot of weight (she doesn't recognize that it is from the disease) and tells me that she is happier than she has been in two years. She has learned to breathe with the bi pap, which she uses at night. Right now she is in the midst of havin her townhouse repainted, putting in new flooring, gardening a bit on the patio and just overall sounds like there is nothing wrong with her. She is going upstairs with an aide to shower, something she hasn't been able to do in three years. Today she held a conversation with me for over an hour; I can't remember the last time it was longer than ten minutes before she couldn't breathe. I am counting my blessings for now but if it hadn't been for this board and all the wonderful people who have responded I would have never gotten through that crisis in March, nor understood how best to cope with the present, so thank you, from the bottom of my heart. In my blessings and prayers for you, Leni
Leni I will always be here to listen and I shall continue to have you and your mom in my thoughts and prayers. I probably already mentioned this but, lol, can't remember so..............are you aware of the COPD Forum. The people are awesome, the libraries are a wealth of info and there are chat rooms if you need to talk. Bless you and your mom, Jody
Good morning Carol,
Wow, what a caring person you are to ask how my mom is doing almost four months later. Maybe her ongoing story will help you or others--it definitely helps me to talk about it.
As I am sure everyone knows, so called "end stage" COPD just worsens. My mom seems to be an anomoly. Carol, funny you should ask at this particular time because since March mom wasn't hospitalized again until this week. Since there has been a sometimes acceptance of dying, she redecorated her downstairs, which hadn't been done in over 20 years. She far overreached financially and the stress of it has gotten to her. Both my brother and I gave her money to help cover the costs, but she is still stressed and my brother decided to stop speaking to her about three weeks ago. Her aide had to be fired for stealing a large amount of cash from her. Since April she has had quite a number of falls, despite her almost 100 pound weight loss (she is about 235 pounds now).
She was hospitalized Monday night when she had another event of not being able to breathe, panicked and called the paramedics. I spoke with her doctor who believes the episode was socially induced, meaning her outside stressors got to her. Her numbers were better than at the time of her March hospitalization. She came home yesterday with orders to take her Xanax in the mornings and then prn. She is depressed again, not so happy as in April, and is looking into assisted living.
Carol, my mom turned 70 in January. At 65, everyone thought she had a year or so. It's been five and she improved this year against all odds. Her rally in April as I said back then was like a near death experience. She still smokes, but says she does her best to cut down. In the five years she developed diabetes, so the cookie and junk eating lessened. I have four teenagers at home and each has flown across country (if you read back you'll see I live in Cali and she is in NJ) at some point this year to see her, so she feels less alone. Until the last three weeks she seemed happier. Now she is depressed, has become bitter and mean when she talks to me, misses family, is undone my my brother's ceasing to talk to her and had a hospitalization. Her PTSD is back, she is having panic attacks (which led to this month's hospitalization) and she has no personal aide (she still has some help from aides provided by the county and state).
Please everyone, I hate to sound preachy, but I so much want to give back to this board a little of what it has given me over the months. If you have severe COPD, look at this story. Changed habits, cutting back or quitting smoking, losing weight, beating back depression, eating more healthfully and getting a little soft exercise (from gardening, just walking across your downstairs, bending to pick things up, trying a cane instead of a walker) appears to prolong your life. It did for my mother. Fight this, people! When you give up and keep to your bed, eating anything in sight that doesn't have to be prepared (cookies next to the bed, or ring dings or candy or anything else junky), wallowing in depression, OF COURSE you are going to feel worse. It was wrong of me to not keep this board up to date about my mother so Carol; thank you, thank you for giving me the opportunity. I promise I will write again as things continue.
In prayers for all with love and blessings,
Leni
PS- Hey Willie, how are you doing?
Hello,
This websiite and all your posts have been a great help to me. I was just dig. with copd, i was told i have 48% of my lungs working and 4 X the restriction. I am not sure what all this means, what stage would i be in? I have so many questions, fears and have no idea what to do. I can no longer perform my job duties in the filed i was in, should i apply for SSI. What do i do from here, I am 35 years old with 3 young children. Me and my wife have been trying to hide it from them. The doctors now say that the COPD is cousing problems with my vegal nerve in my heart cousing me to have black outs or pass out spells when coughing or breathing to hard. This is crazy. I am 6'1 230lbs. I am a strong and fit person. I dont know where to go from here - what future will i have and how long will it be? I dont want to suffer, and i hate the thought that my family will go through it with me. I have never been scared of anything, now i only fear the damage i will leave behind. If you ahve nay thoughts on these questions i could use the input, i understand what everyone here is saying, who are you going to talk to, your loved ones dont wnat to hear it, your friends will avoid it. Oh - its all going to be fine, no its not. Thanks again
An awesome place to go with libraries that have a wealth of wisdom. Chat rooms to go to, several different ones. You must check this out. There are message boards where people go and read your post and try to help you and they all really care. There are surgical libraries and everything you could possibly want or need in the way of info, people to talk to etc. I am 53, in 2008 I had 22% lung function. I'll have an update in July and then see if I'm a good candidate for lung reduction surgery or perhaps a transplant. One of my friends from there just got a new lung :) If it wasn't for this site I'd have been lost.
This message is for Jody and Willie and others of you out there who are young with low lung function,
Have been tested for Alpha-1 Antitrypsin Deficiency, a genetically inherited COPD in which you get one Alpha gene from each of your parents? People with Alpha-1 lack the protection in their lungs so they can have extremely low lung function at a young age.
Look, no matter how much you smoked (and some people with Alpha-1 have never smoked!) if you're in your early 50's or younger, it is not normal to have lung function (FEV1) of 30-40% or lower. And with your family history of COPD, asthma, etc., you definitely should be tested. Please ask your doctor about it and if he or she tells you it's a rare disease, he or she is simply not aware of just how common it is.
Here's an article about Alpha-1 with some resources for more information and help: http://www.healthcentral.com/copd/c/19257/29639/alpha-1ad-deficient
My Best,
Jane
http://www.breathingbetterlivingwell.com
My husband, who is now 74, was told last year that he has fianl stage COPD. He has progressively gotten worse during the past year. He doesn't have to strength to do anything any more. He is on oyxgen 24/7 #3. He has been like this for almost a year now. When he walks across the room, he is so out of breathe that he can't hardly talk for a few minutes. He sleeps a lot (like 18-20 hours). He has lost weight since last year. He has lost from 165 lbs. down to 134 lbs. when we were at the doctors office this week. He just doesn't want anything to eat. He drinks Ensure some so that helps some with him not eating as much. I don't really sleep real good at night for waking up in the night to check to make sure he's still breathing. Of course, I think that is just aprehension on my part, because if I'll just be still, I can tell, because when he breathes, the bed shakes. I just don't know what to expect with end stage COPD. I have tried to read all that I can, but nothing seems to tell me what to expect to happen. This week, his doctor ask, making sure that he has a living will, expressing his wishes about a venentalator (spelling). His answer was, "if I can get better, yes, if not, don't tie me to a machine....let God take me home". I have read somewhere that the finger nails start curving, like ingrown nails....his nails are like that. Please tell me if there is anything that I really need to look for or do for him. OH, I forgot, he is on the nebulized 4 X day.
Thanks,
Kate
Dear Kate, I am sorry you are having to go through this. I went through the same thing with both my parents and now I have copd as well. Oxygen 24/7 unless I sit still and watch a movie, no nebulizer just several inhalers. I am 53 with a 13 yr. old child so the Dr. is talking lung reduction surgery or transplant. My father passed first and he was in Hospice his last few days. He was going to come home with me for the end of time(this was 1999 and I was ok then to take care of him). All the things they told us to look for to know the end was drawing near never occured so I was NOT ready as I just expected the signs to let me know when the time was drawing near. He passed away in complete comfort thanks to the angels in Hospice. My mom had pneumonia and that signaled the end for her. She also had copd. Just make sure, if your are believers, that all he has to do to be welcomed into heaven is ask forgiveness of his sins. I say this as my dad was worried until told that and that meant alot to him. I wish I could say something that would comfort you but I cannot, he knows how much you love him and care about him.............if you ever need to talk
angeldancing101@gmail.com (((((hugs to you)))))) Jody
Please notice my posting above about copd internat'l they are tops
Dear Kate,
I, too, am so sorry you're going through this. You ask about things to watch for i that might indicate that your husband is nearing death.
First of all, everybody is different. As Jody said, the signs that she and her family expected to see.....none of them were there. Having said that, I would say that with a 30 pound weight loss, sleeping almost all the time and being unable to do much of anything at all puts your husband at a very, very serious time.
Having a Living Will with a Patient Advocate (somebody who will speak for you and carry out your wishes in case you cannot speak for yourself) in place is a good idea for anybody, of any age.
I also suggest you call Hospice to at least connect with them and tell them your situation -- not because you think he'll die soon -- but because you need them right now to be there, to answer these questions, and to be a support not only to your husband, but to you as well! People almost always wait far too long to call Hospice. They fear that calling them signals the end. Not true at all. Look at it this way -- Hospice is there to help make life easier and yes, even better, when you have a terminal illness that has reached a serious phase. A person can be in Hospice for months, so they can live their life with help and support.
Again, I'm am so sorry you are going through this. How difficult it must be for you with so many questions while watching your loved one struggle for every breath.
I'd like to say to everybody else out there, please, do your best to face your COPD as early as you can so you are well informed and get the treatment and support that can help you have a full, active life. You'll stay as healthy and strong as possible -- often for many years -- and someday if / when you are losing ground you'll have a good idea of what to expect and how to handle it.
Thank you, Kate and Jody, for being a part of this very important discussion.
Jane
http://www.breathingbetterlivingwell.com/community.php
I was diagnosed with Emphysema 21 years ago, when I was 40 years old. I was given no information about my diagnosis only that I had it. There were no computers to look up exactly what having Emphysema meant. All I knew was that my Grandpa had it & he lived to be 80. I did not know that I would spend the rest of my life struggling to breathe.
Two years ago I was diagnosed with end stage/stage IV Emphysema. I was shocked & scared, it was like stage IV Cancer, you know you are going to die. I hated what I did to myself, but I was not going to give into it, I continue to work, I take my medications as ordered & try to stay active. I plan on seeing my Grandchildren grow up.
You have to have a purpose in life, set goals & work to achieve them. Your life is what you make of it. A few prayers now & then wouldn't hurt either.
Take care,
Hello Linda,
Thank you for sharing your story. I just have to ask - with you being as young as you were (and still are!), have you been tested for Alpha-1 Antitrypsin Deficiency? That's genetically inherited emphysema/COPD that shows up in younger people. You mention that your grandpa had it. If you don't know, it would be worth asking your doctor. The test is easy. Just a simple blood test.
You're so right about having a goal. It's important to have something to look forward to and many of our patients say the same thing. They want to live long enough to see their grandchildren grow.
About the lack of information...yes, years ago there was NOTHING except dated information saying that you don't have many years to live after diagnosis. That's all some people had to go on! Not only terrible, but so untrue!
Thanks again for your comment. It will help a lot of people who have, or are having, the same experience. There are a whole lot of you out there!
All my best,
Jane.
http://www.breathingbetterlivingwell.com
Thank you so much for your response. It is nice to know someone is out there willing to share their knowledge and experiences.
I did have the test done and it tested negative. I have also been to the Mayo Clinic (2 years ago)& they were the ones who diagnosed the end stage/stage IV emphysema. I read it in the copies they mailed to me after my appt. I had gone to them about the lung reduction surgery. They did not recommend it & recommended a lung transplant, which would give me a 50/50 chance. I wasn't quite ready to give up on living, yet. I thought I was better off for the time being to stay the way I am & maybe in the future make it an option. I just wasn't ready to give my a life a 50/50 chance.
Hello Linda and Jane,
I agree with both of you that goals and continuing to fight are so important to survival.
I was diagnosed over 10 years ago with very severe COPD. I, too, had no information and looked to the internet for answers and connections with others. I'm now still very severe, but living probably a better life than prior to diagnosis because I wouldn't give up.
I found a home at BreathingBetter,LivingWell.com and learned all that I could about COPD. I was thrilled that it wasn't necessarily a death sentence and that there were things I could do to make my breathing and my life better. I am now expecting my first grandchild and am looking forward to the next journey of my life.
Goals are so important as well as the will to do what we have to in order to make our lives better.
Thanks so much for sharing your stories!
Awesome!
When I was at Mayo one of the tidbits of information I remember was the nurse telling me how the mind is a powerful entity. With a positive outlook I feel we can accomplish anything.
I believe the Lord works with us when we work through him with a positive attitude about what we want in our lives. Forget the negative; always remember "anything is possible when there is hope."
Hello, I was diagnosed with end stage COPD 4 years ago. I went through pulmonary rehab which helped a lot. The problem was, I could not quit the smoking. I tried many times. I also have pulmonary hypertension. Now I am really at my end...and still smoking. I take daily doses of prednisone, and many other medicines, as well as Oxygen much of the day, and every 4 hour breathing treatments along with some long term inhalers. I can no longer stand up straight or walk more than a few steps. Sitting is even getting more difficult. I am no longer able to care for myself, my family helps a lot. I doubt if I have 2 weeks left to live, and it is very frightening to be breathless most of the time. I would advise all with this problem to quit the smoking. I was not, and still am not able, and it is my downfall. I am 64 years old and have smoked since I was 13.
Hi, am 53 and raising my 13 yr. old. Two years ago my lung function was at 22% and the Dr. mentioned lung transplant. Going next month for a new PFT and then a CT scan to see I'm a good candidate for a lung reduction. May I ask what your FEV1 was(your lung function)when you went to Mayo and they told you you were at end stage? Thank you kindly,Jody
Hi.
My lung function is @ 34% or @ least it was when I went to Mayo 2 years ago. Since then I have had 1 exerbation which was last spring & it lasted for 5 weeks. Has your MD put you on Musinex, they are finding this is very beneficial for those who have excess mucous. I have been using it twice a day since last spring. Have you been tested for the genetic emphysema? I really do believe attitude plays a big part in our lives. The more positive you remain, will help you through the bad times. I was told the mind is a powerful thing.
Thank you kindly for replying anonymous. Yes I believe the mind is a very powerful thing. I've much to live for!!!!! I need to finish rearing my beautifull son and then watch him graduate high school.............possibly meet someone special and begin a family. Main thing right now is being here to answer all the questions a young person has......and needs their mom to be there to answer them. I know some children are not to fortunate and I feel for them, I lost my mom almost four yrs. ago and I still want/need her. I feel her in spirit, likewise my dad, and they give me strength. Three years ago I drove my son to summer camp and then to emergency. The night he was born(well he was actually born the next morning at 11:55am)so I should have said the night before...........well anyway I drove myself to the hospital to have my own baby. Yes, there was a husband beside me but he was not too coherent, told me to have something to eat and go back to bed as the first baby takes quite awhile to actually be born(this all being learned that weekend at a weekend long birthing seminary). Funny we came home from the seminar Sunday afternoon and Sunday night around midnight.............well it was time to go. And true enough usually grabbing something to eat and going back to bed would have been the thing to do but because of what was physically happening to me I remember they had said if this happens "go straight to the hospital as not to risk infection" LOL. The way things happen huh? hehe I also come from very strong stock and am as stubborn(and sweet, most of the time)as they come so I plan on staying as long as possible. After that I will help from the spirit realm. Sorry I yapped to much. Have a most wonderful day. Jody
my mum as end stage copd the docters put her on 2 liters of oxigen 24/7 after a few months she started getting worse an was illusinating.the hospital said she would die if she stayed on 2 liters and put her down to 1 liter and sent her home saying there was nothing thay could do it was just a matter of time that was 4 weeks ago she became ill again and her sats were going low and she lost 2 n half stone.so thay put her back on 2 liters three days ago and shes already started illusanating dose the mean she dosent have long left
Dawn,
I think you should get your mother to different doctors, in March I was severly ill because of my COPD. I was down to 90 lbs. because it was far to hard to eat anything because I just couldn't get a breathe (I was on 3 liters of oxygen 24/7). I finally gave up and called an ambulance, they thought they would have to intubate but I am a fighter and begged for them to hold off on that and began to pull out of it. I had phneumonia, a very bad case. Once started on a very strong antibiotic thru my IV I began to slowly get better, it wasn't easy I was so weak I couldn't even use a bedpan it was too much exertion for me so they put a cath in. I was hopitalized for 2 weeks all awhile on antibiotics and another 3 weeks after released. But I did get better which I really didn't think was going to happen I didn't think I'd make it out of the hospital. I am still on my oxygen but I'm alive. The reason I say get different docs is because shortly before going to the ER I had seen a Nurse Practioner who I tried to convince that I had an infection and she told me that I absolutely did not and I trusted her and let it get far worse than it should have. Good Luck to you and your mother, and just try to help her not over exert herself, because even with the oxygen it's still hard to do alot of things that seem so simple to someone who can breath easily.
I wish I had seen this article sooner my mom died of End-stage lung disease and another syndrome in May.
Dear Ann,
I'm so sorry to hear that you lost your mom. I'm sure it was painful for her, and for you, to go through that without information that might have helped in the understanding of end stage COPD.
I know, there are a lot of people hurting out there - confused, frustrated and discouraged. And it doesn't have to be that way. There is help and hope.
Please accept my sincere sympathy on your loss, Ann. I hope you are able to find comfort and joy in the memories of good times with your mother.
My Best,
Jane.
http://www.breathingbetterlivingwell.com
Thank you so much for giving me hope. My mom has been fighting COPD for years. She sees a lung specialist every three months. After being in the hospital 3 out of the last 4 weeks, we encouraged her to set up an appointment with him earlier. She met with him today and he has informed her that her lungs are not stable and it is time to call in hospice and complete her advance directives. My mom is convinced that she doesn't have much time left. She cannot eat much, takes many naps, cannot walk far without difficulties. Her lung function is approximately 15% at this time. While I know we cannot expect to have a definite answer, should we be calling in family that lives far away to see her? Should we start the discussion about her final wishes? We, my brothers and I, are thinking she should have another 6 months to a year while my mother believes she has just a couple months. How can I help her enjoy her time and not give up? So many questions, such a scary time.
Hi Alexandria,
Sorry to hear your mother has this. I just wanted to say that even if she has a year left why not just ask if she is up to having relatives visit, if she wants to see them call them now so that maybe it will take her mind off her illness. As soon as my mother found out how bad my copd was- she rushed to Arizona from Florida, honestly, I don't know how much time I have and have not bothered to ask my doctors how long they think I have left, but it was nice to see my mom regardless. I hope you and your family enjoy the time you do have left with your mother. Try not to dwell on how long she has left, rather enjoy everyday you are blessed to have her with you.
Dear Alexandria,
It sounds like your mom's COPD is very advanced. 15% lung function is extremely low. I would have to agree with her doctor that it is a good idea to call hospice.
However (and this is a big "however"!), I want to say that just because hospice is called, that doesn't mean your mom will pass away soon. I can't say it enough... hospice can help you live -- yes, live! -- in this difficult time with less worry and stress. Experts can monitor your mom and answer many questions so she, along with you and the rest of the family can spend more time enjoying your time together. It's okay to live on if you're in Hospice!
Definitely, it's a good idea to discuss final wishes. Anytime is a good time, for any of us. I'm relatively young and healthy and I already have written down some thoughts on my funeral (and much to my 26-year-old daughter's dismay, I've shown them to her).
Finally, this might sound kind of scary, but sometimes (not always) the person who is ill is correct in saying that their time on this earth will not be long. Sometimes they have a sense about this. In the last conversation I had with my dad, he sternly said, "Now, you girls (my sister and I) take care of mom." He was adamant as he pounded his fist on the tray table as he sat in his chair at the hospital. I was taken aback, saying, "Well, alright Dad, but we won't have to do that for a long time. You're gonna do just fine and you're gonna be around for a while yet." My dad passed away a couple weeks later. So, we do have to listen to our loved ones and respect that they might understand something we don't.
Lisa is right. It's a great idea to get together as a family. That last conversation I had with my dad...it was kind of inconvenient for me to drive to Chicago for a day, to spend a couple hours with him before his procedure, but I am SO glad I did! I will treasure that time for the rest of my life.
Alexandria, I hope this helps and I wish for you, your mother and your family all the best for cherished times together and peace in your hearts, no matter what the future holds.
Jane.
http://www.breathingbetterlivingwell.com
PS: Thanks for letting me share a little of my life with you!
Thank you so much for sharing a part of your life. It is so scary to see the woman that has been there through thick and thin sick. I am the youngest and have always been a mommy's girl. I somehow think that this is harder on me than it is on her. She keeps telling me to take care of dad and she rolls her eyes when I tell her she has too much yet to do so she can't go yet. I am expecting my first grandchild in November and I so much want her to see it. Realistically, I know that is a slim option. The nurse yesterday told us that her right lung has shut down. My brother who is a radiologist stated that he hoped she had until the end of summer. I am just enjoying being with her day to day. I pop in several times a day and she enjoys that. Again, thank you for your help.
Alexandria
Hello all,
At the time I am writing this, I am sitting with my mother at the end of her life. COPD is finally claiming victory. She rallied on Saturday and we thought she might have a few more weeks. She then started with convulsions and vomiting in the evening. Early Saturday evening she slipped into a coma and here on Tuesday she is still hanging on. She has an amazing spirit and is not giving up the fight. The hospice nurses have been great and have taken care of educating us at this crutial time. We have learned to give her the medicine through her port. Morphine and Atavan every two hours by port. My mother has lived with COPD for many years and she fought a great fight. Her breating is slowing and we are with her to help guide her way to heaven.
Alexandria
Hello, My father in-law has COPD and tested that his appx. 20% of his lungs are working. He is on oxygen constantly. He has asthma, fifty years ago had farmer's lung... quit smoking a few years ago when he went onto oxygen full time. His Dr. isn't understanding that he needs to explain the future plan/steps that will happen. I am just going to put this out to help me understand so I can support. He can no longer make it from one side of the house to the other.
1. How many years does he have left if literally every two weeks he goes for steriods and antibiotic for bronchittis?
2. What are the typical steps that happen? Does he slow down more and more, have an attack, or is it a long painful struggle?
Sorry for the tough questions.
my mum has suffered with COPD for 5 yrs has always been a heavy smoker.. my mum has just been told she only has 20 percent lung capacity left in both lungs, since dec 2009 shes been in and out of hospital with chest infections which badly damaged her already failing lungs, shes home now on oxygen 24/7 nebs 4 times a day plus meds ,yet in the last 6 mths this is the best we have seen her shes even more mobile now than she has been in these 6 mths,, we cant believe that her consultant has said her nxt attack might be her last, when she looks so well shes even gained 1/2 a stone taking her to 6 st since being home, its very confusing she no longer smokes and has a grt medical team looking out for her shes a fighter but is this the calm before the storm its awful not knowing so u have my sincere symphies my thoughts are with u and ur family
Dear Samantha,
I'm so glad your mom is doing better! What great news that is!
For sure, it can be confusing at first to hear that lung function is so low and then to see her improve this significantly. But, it just goes to show once again that people with low lung function who quit smoking, get the best care possible, and have support at home can improve and live on for quite some time.
A key component of her care, from now on, should include your mother and your family being very aware of what triggers and warning signs to look for so any potential infection can be caught early and treated before it gets out of hand. This, along with low-level exercise (not just activity, but actual exercise) might help your mother improve even more. Ask her health care team about watching for early signs of infection and about Pulmonary Rehab!
Thank you, Samantha, for writing in. I wish your mom, you and all your family health and joy for a long time to come!
Jane.
http://www.breathingbetterlivingwell.com
Hello, My father in-law has COPD and tested that his appx. 20% of his lungs are working. He is on oxygen constantly. He has asthma, fifty years ago had farmer's lung... quit smoking a few years ago when he went onto oxygen full time. His Dr. isn't understanding that he needs to explain the future plan/steps that will happen. I am just going to put this out to help me understand so I can support. He can no longer make it from one side of the house to the other.
1. How many years does he have left if literally every two weeks he goes for steriods and antibiotic for bronchittis?
2. What are the typical steps that happen? Does he slow down more and more, have an attack, or is it a long painful struggle?
Sorry for the tough questions.
Dear Sonny,
I'm sorry I haven't responded earlier. What a struggle your father-in-law is having, and I'm sure it's most painful to your entire family to see him this way.
In order to answer some of your questions, and I hope this doesn't put you off, but I think it will help to read another article, "Dying with COPD," http://www.healthcentral.com/copd/c/19257/105586/dying-copd
Wishing your father-in-law and your family...comfort and peace,
Jane.
http://www.breathingbetterlivingwell.com
as a young child i had pneumonia ( i am 54 now ) and since then ive had a lot of chest infections,it seems i am never away from the doc's ,ive been on a lot of different inhalers plus they give me prednisolone and amoxicillin,this has went on for yrs till a new clinic nurse arrived at our med centre,she was shocked to discover i had never been refered to a respiratory clinic in all this time,anyway i went to the respiratory for the first time on tuesday ,the doc said its asthma and copd ive got,i never took in a thing the doc said to me and left the clinic in shock and dazed, so i looked copd up on google and was shock to see ive suffered a lot of the systoms ( spelling ) of copd ,in the last 4 mths ive lost 3st i am coughin up blood,i dont even no what stage i am at ???? where do i go from here ??? when i go to the doc its short and sweet ,they cant get you out the door quick enough a lot of ppl said its help them by read what everyone has said in here but i am worried sick ,i cant even think straight, i smoke and have done for yrs ive got to stop and stop now !!! but the more i try the more i smoke .... betty
Dear Betty,
I'm so sorry you're going through this. It's hard to believe that you've not been diagnosed until just now! But, its a good thing you have finally seen a pulmonary doctor.
The diagnosis of COPD should concern you, of course, but you should know that a person can live a long time with COPD if they stop smoking, so yes, you're right. You have got to stop smoking.
My big concern is that you're coughing up blood and that is not the norm for COPD. If you're coughing up blood you should see a doctor immediately, even if it takes going to the emergency room.
You're taking steps to figure out what's going on in your lungs and getting the help you need. Keep on going.
I wish you well.
Jane.
http://www.breathingbetterlivingwell.com
Hello, My mother recently died from COPD/CO2 narcosis after a long hospital stay. No doctor had ever told her what to expect and or ever mentioned CO2 narcosis, which is apparently very common and causes death in copd patients. I've only been able to find any info on it when I google "copd co2 narcosis". The information that is available about COPD is terribly vague. So for those of you with severe copd...if you start feeling really exhausted and are sleeping all the time, call 911 or get yourself to the ER before it's too late!
Hello, My mother recently died from COPD/CO2 narcosis after a long hospital stay. No doctor had ever told her what to expect and or ever mentioned CO2 narcosis, which is apparently very common and causes death in copd patients. I've only been able to find any info on it when I google "copd co2 narcosis". The information that is available about COPD is terribly vague. So for those of you with severe copd...if you start feeling really exhausted and are sleeping all the time, call 911 or get yourself to the ER before it's too late!
Thank you for the explaination. I have 22% of predicted. I was told by one doctor these tests show numbers and said not to get so wrapped up in them because they are just numbers, and by another doctor he expected to see me in a wheel chair. I live my life as active as I can, I attend pulmonary therapy 4 days a week for 40 minutes of cardo exercise and do weights 2 days a week. I thank god everyday I am still able to get in my car when I feel up to it and go where I want to. I am 52 years old and still have things to accomplish in my life.
I am very aware of what is happening with my body and keep my attitude as positive as I can. I am proof that just because you are diagnosed with end stage you do not have to stop living life.
Respiratory Therapist live online always willing to answer any questions, contact me any time. Best wishes to you all. I am so glad to be able to help you clinically and outside the hospital. People with COPD are some of the strongest people I have ever met. You all are amazing to me. www.liveperson.com/kate-rrt
husband has had lung function tests and at the last visit to Dr. had a breathing treatment and his #s went down.He is now at 50%.He can't walk from one rm to another without stopping to breathe.
The coughing is so violent he has passed out at twice in one day.Has an appointment with Dr.in mid Sept and I'm scared of the #s being even lower as he still smokes and how much longer he has to live and also what to expect.
I am so tired of the health visitor telling me that it is okay if my husband smokes, 'at least he is not lying about it' is what I am told. And this by a professional who is supposed to be helping him. It might be okay for them. It might be okay that he is telling the truth but it is NOT okay by me. I am glad that he is telling the truth but I am the one who gets up in the night to check if he is still breathing. I am the one who is scared if he does not get up by a certain time each day. I am the one who does not know if this time he will get out of hospital and I am scared that I don't tell my girls in time for them to say goodbye. How dare anyone say or even think it is okay!!!
I am so tired of the health visitor telling me that it is okay if my husband smokes, 'at least he is not lying about it' is what I am told. And this by a professional who is supposed to be helping him. It might be okay for them. It might be okay that he is telling the truth but it is NOT okay by me. I am glad that he is telling the truth but I am the one who gets up in the night to check if he is still breathing. I am the one who is scared if he does not get up by a certain time each day. I am the one who does not know if this time he will get out of hospital and I am scared that I don't tell my girls in time for them to say goodbye. How dare anyone say or even think it is okay!!!
When the breathing treatment caused his #s to decrease, the Dr.became very upset with my husband and said I don't give a damn how you quit smoking but you have to quit and now' Offered him ways to quit, but it fell on deaf ears and he's still smoking.
He doesn't have to many good days and is exhausted all the time.
Still has a drivers liscence and that scares me.
Dear Rhonda,
It's hard when someone you love isn't quitting smoking. I know. I've been there myself. As much as we're tempted to do it, and as much as at we're our wit's end, it simply doesn't help to nag. I suggest you keep on hoping and praying being supportive that your loved one will be able to quit.
You're going through a lot yourself right now, worrying about this. Keep on seeking support for you. And don't give up!
All my best,
Jane.
http://www.breathingbetterlivingwell.com
Dear Zavrou,
Oh my, it sounds like you're really frustrated and you have reason to be! No, it is not okay to smoke. But it's never too late to quit, and the sooner you do, the sooner your decline of lung function will slow down.
Here's something that may help. If you click on this link and scroll down to page 92 (the Fletcher-Peto curve), you'll see a very interesting graph showing the rate of lung function decline according to when you quit smoking. http://www.stacommunications.com/journals/diagnosis/2006/Diagnosis_feb_06/089-Asthma.pdf
All my best for health and happiness to you and yours. Be strong.
Jane.
http://www.breathingbetterlivingwell.com
Dear Zavrou,
Oh my, it sounds like you're really frustrated and you have reason to be! No, it is not okay to smoke. But it's never too late to quit, and the sooner you do, the sooner your decline of lung function will slow down.
Here's something that may help. If you click on this link and scroll down to page 92 (the Fletcher-Peto curve), you'll see a very interesting graph showing the rate of lung function decline according to when you quit smoking. http://www.stacommunications.com/journals/diagnosis/2006/Diagnosis_feb_06/089-Asthma.pdf
All my best for health and happiness to you and yours. Be strong.
Jane.
http://www.breathingbetterlivingwell.com
Dear Jane
My husband has had the violent cough now for at least 10 yrs and yesterday was the worst I have seen yet.He passed out again and seemed like an eternity when he started to breathe.
Could you please tell me what to do for him while I am waiting for The ambulance the next time this happens as I know it will.
Dear Rhonda,
Oh my....I'm so sorry you're going through this. Both of you! I hope your husband will get help soon ---- and relief from that horrible cough. You ask a good question and that's one that you should ask the doctor directly when he examines your husband. He can see exactly what's going on.
All my best to you and your husband.
Jane.
http://www.breathingbetterlivingwell.com
I wish so much I would have found this website before tonight... My mom is being released from the hospital tomorrow morning with the expectation of going home to the care of hospice; being told by her doctors after a recent fight with pneumonia (in both lungs) that there is nothing more that can be done for her...She has been in the hospital now for a little over a week and this decision by the doctors was derived at after no improvement in her lungs after treatment by two different antibiotics... According to the doctors the only thing that has been keeping her alive was the Bi-pap machine they were using on her---although it should be noted-she has not been on the machine continually while in the hospital and has been able to maintain a normal ogygen level of between 90-95 for a good portion of the days with short periods of being on the Bi-pap machine when she became exerted when having to get up to use the portapotty at her bedside. It just seems to me after reading the many comments made on this website from people who have had similar experiences with this disease - that there was perhaps still some hope there that has not been offered or given to my mom or my family????? Of course at this stage - my dad has signed over all the papers for hospice and my mom will go home tomorrow with no further treatment except for pain management to keep her comfortable!
Hi Roxann,
Did your mother go home from the hospital today? What other problems does she have other than COPD? I was just curious if something else could be the reason for her being turned over to Hospice?
I'm sorry you are having to go through this dear. I have COPD and have been in very bad condition before, but never told anything about Hospice.
Kassie - Yes my mom did come home yesterday and all of my family is now here - again at the doctors urging to get them all home. As far as other medical conditions - outside of high blood pressure - only other is the COPD and of course the recent bout with pneumonia. According to her doctors the pneumonia damaged her lungs even worse then they already were, and so they are just saying there is nothing more medically to be done and since she is chosing to go home with no further treatment (which they claim there is none anyways) they ordered hospice for the home to help make sure she is kept comfortable and as pain free as is possible until she passes away. Not being a medical person I have no idea at what point or how they determine there is nothing more to be done???
Thank you for your kind thoughts and I wish you well in your endeavors with your illlness!
Hi again, Roxann,
You have been on my mind all day. I've got stomach problems today, or I would have gotten back to you sooner.
Did the doctors tell you what your mother's breathing capacity is? They refer to it as her FEV1. Also, is your mother on oxygen?
You said your mother also wanted to go home. Was she just going along with what the doctor was saying or did she really want to go home? Is she giving up also? Is she depressed?
I guess she will still be going to see the doctor, won't she? I've heard of people who were put on hospice and then improved enough to get back off of it. Did her doctor says anything about that?
I'm so sorry I'm asking so many questions. I'm just confused about why they are giving up on her just because she has COPD. I just feel like there is something else here.
I'll have you in my thoughts and prayers. If you don't want to respond, you don't have to. I don't want you to feel as though I am prying. I just wanted you to know I'm here for you.
Kassie - Thank you again for your kind words and I don't mind answering your questions. I had alot of questions re: this whole situation and unfortunately they never seemed to get answered and in the end I had to defer to my dad's wishes as well since he has been the one there 24/7 days a week the last 2-2 1/2 years taking care of my mom.
As far as her breathing capacity - I can't tell you exactly how they rated it while she was in the hospital after the pneumonia had done its damage. I do know that some years ago she was told by the lung doctor she was at 30% of her lung capacity. She has been on oxygen now for some time and when she was at home prior to going to the hospital she had to do home nebulizer treatments 4 times a day--- Prior to the doctors putting her on prednisone she was ending up in the hospital almost every month because of breathing problems - but this seemed to stop once she started the prednisone but of course they normally don't prescribe that or want you to be on it all the time unless the pros in your medical situation warrant it and outweigh the bad effects that come with it when used long term! When my mom was admitted to the hospital this time with the pneumonia (which was in both of her lungs) she had developed diabetes which the doctors said can caused by taking the prednisone longer term...She also used inhalers at home when needed.
Regarding her decision to go home - it was I'm sure based on what she had been told by the doctors... which was that there was no further medical treatment available to her "as her lungs were just too bad"---So you either decide to go to a nursing home and die or go home. She chose to go home. Besides the bi-pap machine she was on at the hospital (which the doctors claimed is what was keeping her alive?) they had also begun to give her morphine in her i.v. which they say slows down your breathing because it makes you calmer and less likely to panic or get excited which of course exacerbates your breathing.
Basically when you sign the papers to accept hospice care, you are saying that you agree to no longer seek treatment of any kind for your "terminal" illness which in her case is the COPD-so there will be no further follow-up for her with doctors concerning this illness... basically you are accepting that they are dyiing and just doing everything possible to keep them comfortable and as pain free as possible. While I realize there are many different kinds of "terminal illnesses" and not all of them would be the same as what is happening with my mom. We were told some hospice patients live for years...
Per the hospice nurse who checks on my mom, there are already signs of her system shutting down - she is retaining fluid (her arms, legs and ankles are severely swollen), her pulse is high, the "gurgling" sounds they talk about are present and today for the first time, she has not really woken up and has obviously also not eaten (which prior to this to the doctors amazement, she was eating very well and had a really good appetite.) Of course how much of this is due to the heavy pain medications they are giving her, I don't but definitely question... But of course I am still not ready to accept my mothers passing and so of course I fight it all! However if her condition continues to progress from how she was yesterday to today; honestly I don't see how she can live much longer then through tomorrow!
I can only pray that however it happens, it is swift and as peaceful and easy as just going to sleep...
Roxann,
I'm so sorry you are having to go through this, but I'll be here for you to talk to as long as you want.
How old are your mother and father? Sometimes our age plays a part in how well we bounce back from an exacerbation. Her FEV1 may have gone down a lot over the past two years and there is no telling how much damage the pneumonia has done to her lungs.
We can only hope that her doctors know what they are doing. Also, if it was your mother's wish, there's nothing you can do now. Just be there for your father when he starts doubting himself.
Here's a big hug for you!
Kassie - My mother passed away yesterday morning... She was 77 years old but her family has had a long life expectancy (her dad died at 100,her mother at 89...) I suspect had she not been a long time smoker she would have had many good years left still.
Having gone through this and having once been a smoker myself (for 20 years!) I can only make a plea to anyone out there who is still smoking to PLEASE, PLEASE, PLEASE stop! I know how hard it is - truly I do but I promise you you do not want to go through what my mother did or die the way she did! It is the most horrible disease and believe me, it does not only affect you - it affect your entire family and everyone you love and who loves you! So if you don't think you can do it for yourself, do it for your children, your husband or wife, anyone and everyone who loves you! PLEASE JUST QUIT!
Dear Roxanne,
I'm so sorry for your loss. Even when we know we'll lose a loved one soon, the finality of it all hits hard.
Thank you for your wise words to the smokers out there. And thank you for adding that you acknowledge that it's terribly hard to quit. Many people simply don't understand that.
I hope and pray that you find comfort in the days, weeks and months to come. And joy in loving memories of your mom.
My Best,
Jane.
http://www.breathingbetterlivingwell.com
Roxann,
I am so very, very sorry to hear that your mother died. I had a feeling that was the situation after not hearing from you for the last couple of days.
You need to take care of yourself now. If you smoked that long there is a possibility of you developing some kind of lung problems at some future date.
I'm not saying this to scare you. I'm saying it because, no one warned me of what could possibly lie ahead if I didn't stop, and I wish they had.
Again, I am so sorry. I am here for you if you need me.
Kassie
This morning my husband was poorly and got an emergency appointment with his doctor. His sats were 85%. What does this mean
Thank you for your reply. I realised that it is the oxygen sturation levels but don't know if this is serious, dangerous or both. How did they drop so fast? Should we now get an oximeter and nebuliser for home? He often and I mean very often gets like this and invariably will not go to the doc preferring to lie down in the hope that he feels better. I was angry with him when it happened yesterday. I told him no one ever sees him like this except me, that I thought he was taking the p**s (I didn't, I just wanted him to see things from my point of view) and if he was really feeling bad he should either go to his Doc or to A & E. When the doc saw him she got a fright (I really like her and the way she handles him). They immediately put him on a nebuliser in the treatment room and said next time he must go straight to A & E. What happens if he does not go? He can be really stupid!!
Hi there, I've just lost my mother in law to COPD at the age of 71. I didn't realise until I read these messages how serious she was and that her life was coming to an end. She's had breathing problems all her life yet she's never smoked a cigarette in her life but it does run in the family so I'm assuming she could have had the alpha 1 gene? She was hospitalised 2 years ago for 3 weeks for pneumonia then sent home on long term oxygen therapy which she was on around 16 hours a day. She never left the house after that and she was also very overweight and suffering from diabetes which I think didn't help her. She had a respiratory nurse who came in to see her and on that morning she passed away she came to see her as she was feeling very poorly but was told her blood pressure was ok and there was no cause of concern. Any way she passed away in her bed on the afternoon of August 16th 2010 and they gave the cause of death as respiratory arrest and they also found she had pneumonia at the post mortem yet this wasn't picked up by the nurse.
Dear Miss Champers,
Thank you for your comment, and please accept my sympathy to your and your entire family on the loss of your mother-in-law. It sounds like she struggled for a long time and I'm sure that having caring family was a great comfort to her.
With a family history of breathing problems as well as the fact that your mother-in-law had breathing problems all her life (and never smoked), I definitely would recommend you ask your doctor about her blood relatives being tested for Alpha-1 Antitrypsin Deficiency. Alpha-1 is far more common than most doctors believe so please don't give up if your doctor says that it's "rare."
There is a lot of good information on Alpha-1 and a lot of help and support for patients and families.
Thank you again for writing in. Your story and your question about Alpha-1 will help other people, I'm certain of it.
Blessings to you,
Jane.
http://www.breathingbetterlivingwell.com
My father in law was very active until this time last year when he came down with phnemonia. We already knew he had emphysema but now the doctors are saying he has only 20% lung function. He has been in hospital almost 2 weeks with a bacteria lung infection and now he is spitting up blood pretty bad. We live in a small town and he is getting ok care but I just feel like we need to check around to see if there is anything else to do. Any advise will be appreciate; just dont want to sit around and give up.
Thanks
Dear feed the system
First let me tell you how sorry I am that your father is suffering like this, as well as you having to watch it. Let me tell you a little something about me, I'm a newly forty nine year old female with very severe copd. I don't know if you know what your fathers fev1 is but I can tell you mine is 21% not good. However since I've been to the doctor, started my meds and PULMONARY REHAB I haven't felt better in I couldn't tell you how long. I was like your father, couldn't walk five steps (and I'm not kidding) and I would have to stop to catch my breath, it was terrible. Now, I do almost anything I want, sure you have to change how you have to do alot of things,but once you learn how and why, it's not so bad. I can now get on the floor and play with my one year old granddaughter. You didn't mention how old your father is? I'll tell you what, if you have a pulmonary rehab in your area and you can somehow get him there, you will not believe the difference it will make. It has helped me so much I firmly believe in the program. I can tell you in my class alone I'm the youngest. most are I would say are in their sixties all the way to their eighties. I have a gentleman in my class that was in hospice who is now back and who is there three days a week every week. he sure inspires me I'll tell you that.Anyway, I'm here to tell you there is hope for your father, don't give up, you need each other when days aren't so good and each other to share the days that are. I hope I've helped in some little way.
god bless you and your family
Helen
Dear Jane,
You know Jane, when I was Diegnosed with severe copd I really didn't understand, I was very confused and pretty much thought my life was over. Then I discovered this site and after reading from others with copd it truley made me look at things differently. I then decided it was up to me to learn everything I could. Yoou see my sister also has cpod has never smoked a day in her life. Hers is more broncituse and mine is more enfazema, but it doesn't matter really, when you can't breath you can't breath. She is very much in deniel and I choose to face it head on. It makes me sad that she Can't aford to go to rehab, I so wish she could. I try and teach her what Iv'e learned and been taught. It just seems so unfair that she can't go because I know it would be so good for her, so I continue to pray that she will be able to soon. Anyway, When I read something like that it makes me so sad, I feel that so many have helped me when I needed it, and most don't even know it, but they did. So I just feel conpleled to let others who have either been newly diegnosed, and that may be scared ( because it is scary) or maybe a family member who doesn' understand (because it is hard to wrap your head around all of it) that there is life after hearing those awful four letters. I don't know what tomorrow will bring but I don't think anyone does, so when I wake each morning I thank god that he gave me another day. Some days are better than others and there are those awful days when you just dont care about much of anything and thats ok sometimes, it happens to all of us ( and you don't have to have copd!!!)
Dear Jane,
You know Jane, when I was Diegnosed with severe copd I really didn't understand, I was very confused and pretty much thought my life was over. Then I discovered this site and after reading from others with copd it truley made me look at things differently. I then decided it was up to me to learn everything I could. Yoou see my sister also has cpod has never smoked a day in her life. Hers is more broncituse and mine is more enfazema, but it doesn't matter really, when you can't breath you can't breath. She is very much in deniel and I choose to face it head on. It makes me sad that she Can't aford to go to rehab, I so wish she could. I try and teach her what Iv'e learned and been taught. It just seems so unfair that she can't go because I know it would be so good for her, so I continue to pray that she will be able to soon. Anyway, When I read something like that it makes me so sad, I feel that so many have helped me when I needed it, and most don't even know it, but they did. So I just feel conpleled to let others who have either been newly diegnosed, and that may be scared ( because it is scary) or maybe a family member who doesn' understand (because it is hard to wrap your head around all of it) that there is life after hearing those awful four letters. I don't know what tomorrow will bring but I don't think anyone does, so when I wake each morning I thank god that he gave me another day. Some days are better than others and there are those awful days when you just dont care about much of anything and thats ok sometimes, it happens to all of us ( and you don't have to have copd!!!)
Dear Jane,
You know Jane, when I was Diegnosed with severe copd I really didn't understand, I was very confused and pretty much thought my life was over. Then I discovered this site and after reading from others with copd it truley made me look at things differently. I then decided it was up to me to learn everything I could. Yoou see my sister also has cpod has never smoked a day in her life. Hers is more broncituse and mine is more enfazema, but it doesn't matter really, when you can't breath you can't breath. She is very much in deniel and I choose to face it head on. It makes me sad that she Can't aford to go to rehab, I so wish she could. I try and teach her what Iv'e learned and been taught. It just seems so unfair that she can't go because I know it would be so good for her, so I continue to pray that she will be able to soon. Anyway, When I read something like that it makes me so sad, I feel that so many have helped me when I needed it, and most don't even know it, but they did. So I just feel conpleled to let others who have either been newly diegnosed, and that may be scared ( because it is scary) or maybe a family member who doesn' understand (because it is hard to wrap your head around all of it) that there is life after hearing those awful four letters. I don't know what tomorrow will bring but I don't think anyone does, so when I wake each morning I thank god that he gave me another day. Some days are better than others and there are those awful days when you just dont care about much of anything and thats ok sometimes, it happens to all of us ( and you don't have to have copd!!!)
Hello, Helen,
Your message really touched me. I have COPD and was diagnosed just over 10 years ago. I was very severe and I, too, thought that my life was over. I didn't get much support from my PCP or the pulmonary specialist.
Thank goodness for computers because after searching online, I found BreathingBetterLivingWell.com. I joined the community and found a home! Lots and lots of information and support from experts and people like me - who knew what we were going through and had answers. It was there that I learned that my life didn't have to be defined by my COPD.
You also mentioned that several members of your family have COPD - are you aware of the COPD that is caused by an enzyme deficiency that is hereditary? It is called Alpha-1. You might want to get your family tested for that. While it is still COPD, it is treated a little differently. But we have members who are also Apha-1.
Thank-you for sharing here, Helen. I would like to invite you to become a member, to share your expertise and enjoy the camaderie of like people who deal with COPD daily.
Eileen
I'm watching my dad go through this. He can't go from the living room to the kitchen and not have to stop for a break.Lets face it COPD is worse than a death sentance!! You have no freedom of movement. Confined to the house and chair. What kind of life is that?? I can see in his eyes if it were legal to kill him. I know he would have me do it for him! I wish i could cause i see how bad he suffers! I also know he only hangs on for his loved ones! I'm not sad that he's dying, I'm sad that i have to live on without him!! Death will set us free! Stop feeding the medical system when there is no hope!!!!!!!
I'm watching my dad go through this. He can't go from the living room to the kitchen and not have to stop for a break.Lets face it COPD is worse than a death sentance!! You have no freedom of movement. Confined to the house and chair. What kind of life is that?? I can see in his eyes if it were legal to kill him. I know he would have me do it for him! I wish i could cause i see how bad he suffers! I also know he only hangs on for his loved ones! I'm not sad that he's dying, I'm sad that i have to live on without him!! Death will set us free! Stop feeding the medical system when there is no hope!!!!!!!
Dear Feed the system,
I'm so sorry your father and your family are going through this. But, I'm here to tell you, it doesn't have to be this way. Not at all.
I invite you to read more on this site, in particular my shareposts that are based on over 30 years of working with people with very severe COPD (30% FEV1 and far less), as well as over 15 years working in pulmonary rehabilitation. Moreover, though, I urge you to read what COPD patients are saying, those in the trenches living with this disease every single day.
I'm sorry you see your father's situation as "feeding the system." It looks like, unfortunately your father - and your family - do not have access to resources that can help him not have to live like this.
My Best to you for peace and comfort now, and in the days to come.
Jane.
No the resources are not there. It is from a lifetime commitment to paying taxes and abiding by the laws. Giving everything you have and when it's starting to decline for him. They offer SSI which is ok for todays standard. But the medicare really sucks!! He had to get down to 25% lung function and a really bad lung infection before being offered Oxygen! I don't think you have to suffer that level of life! Didn't you know it's Socialism for the rich and Capitialism for the poor!! But then again i'm sure you don't see it your at a much better level in life. Why don't you help with some resources Cause when your working class your white trash and no one cares!!!!
Dear Feed the system,
Having a chronic disease - coping with it, and trying to learn what you need to know to stay as well as possible - is far from easy. For some of those treating COPD, especially, there is still a large gap in knowledge and empathy for those who have it.
The people I've known who are able to not only survive, but thrive, with very severe COPD (less than 30% FEV1), have been those who sought out - and found - information and support in spite of a far less-than-perfect system. As with anything else, those who ask, "What can I do for myself?" rather "What can you do for me?" do better and get farther in the course of life with this difficult disease. And this holds true across all social and economic levels. I've seen COPD act as a significant "equalizer" -- CEO's sitting side by side with people who are on Medicaid and have little education, learning together, breathing together and with a high level of mutual respect for each other.
Learn all you can, get support from health care professionals who are kind and understanding and from peers who are walking the same road.
All my best,
Jane.
http://www.breathingbetterlivingwell.com
Today is the first time a Dr has said the words "end stage" about my mom. She is 84, and was successfully treated for stage 1 lung cancer 3 years ago. She has been in and out of the hospital over the last 2 years, but always made a fairly good recovery. We had kind of let ourselves forget that this is a progressive disease. Now she stays in bed most days and has gotten so weak that she can't make it to the bathroom on her own. Obviously, it has been hard to watch the mental and physical deterioration due to the hypoxia and meds. I guess the hardest thing is the bitterness I feel because she has chosen to go on smoking (not near her oxygen at least). She is in the hospital now and will probably spend Christmas in there too. She lives with one of my sisters, and they sit and smoke together in the house. My other sister in that small town, smokes also, and neither sister has made the effort to quit, though they try to get mom to quit. Mom has decided that her time is up, and with each O2 drop event and panic attack, she is tired. I think now we just have to give her "permission" to stop fighting, if she can't go on. It is just sad to see her so scared and in panic, a situation that I know will get worse before the end. It is such a roller coaster ride.
I just want to say there is an end stage. I do not say to scare anyone.
It is a reality.
My mother is in the last stages and all her care has been through the #1
clinic, Mayo.
she is confined to a recliner, she has been on oxygen 24/7 and the highest possible. She has no appetite and trys to eat but cant.
even on the high amount of oxygen when she moves in her chair or speaks it drops down in the sixties.
She has all the medications etc. possible.
My mother has hospiss now for two weeks.
She is very weak ! There is no getting better at this stage.
Dear Peg
I first wanted to tell you how sorry I am to hear about your mother. I also have end stage copd, But there is still alot of living that can be done for some with end stage copd. I understand that death is a reality however, death is inevitable for each and every one of us. I think for the most part, everyone that has copd and isn't in denial knows that the disease will not get better, but hopefully we can slow it down. there is no doubt that it is an awful disease and speaking from one that has it, as well as a sister and brother, and also a mother that passed on with it I know first hand what the disease can and eventually will do. So if you look at it that way then yes there is an end stage. I try to live my life the best way I know how, and make each and every day count as I'm sure your mother did. It sounds like your mother has great medical care and a loving daughter who I know only wants whats best for her now and having hospice will be a great help and comfort for your mother as well as you. I don't think I mentioned it Peg, but I was diagnosed almost a year ago at the age of forty-eight and even tho I have "end-stage" the only one that really knows when the" end" will be is god. So I will, as well as everyone who has ever suffered from a chronic condition whether it be copd or not has done, live, laugh and love. oh yeah, and cry at times but, most importantly, LIVE! until the day god says it's time to come home. I will pray for for you because I have been where you are right now with my mother and I know how hard it was. Just know when you think the end has come, for your mother, it will be the beginning for her. Peg, I hope I haven't upset you by my words if I have I apologize. I wish you and your mother peace and comfort.
Helen
Thank you, I do understand what you are saying. I know many that get copd. can live many years. I just needed to speak my experience. My intent wasnt to take away any hope from anyone. When I read all the posts it saying there isnt an end stage. I had to share what my mom is going through. I pray everyday for all that are suffering. I pray that the Lord will build our strength and faith to deal with what life brings us.
Thank you for your thoughts and prayers, as you will be in mine.
God Bless and Stay strong!
this person drinks and smokes alot. what is that doing to him.
Dear Meme,
To answer your question in brief, unfortunately, smoking and drinking "a lot" for a person with very advanced COPD will most likely hasten the time of death than if he or she didn't do these things.
As we said, it is possible to live for quite some time if you are technically in "end stage" COPD, and that can be achieved with staying away from cigarettes, excessive alcohol intake, and by staying as stable as possible.
I wish you and your loved one the best.
Jane.
http://www.breathingbetterlivingwell.com
I know it seems insane that I still want to smoke, when at times I can barely breathe. More insane that as soon as I take a nebulizer treatment, I think, "Wow, now I can smoke!" I am down from a pack and a half per day, for forty years, to an average of ten cigarettes a day. My 02 sats are running from 85-87 at sleep, so they put me on 2 liters of O2 at nightime. My mother died at age 64 of COPD, emphysema, and congestive heart failure. So far, my heart is fine. I am on atenolol for blood pressure and increased heart rate, following an incident of hyperthyroiditis in 2001. Supposedly, I have emphysema, as well. This is where I am having trouble. I do little for myself, having been a caregiver all my life, or as long as I have memory. (Oldest daughter of a large family, and a people and animal rescuer.) I did not smoke til I left home and began at tech school while in the military. I was odd "man" out at break. It seemed innocent enough. I had been an athlete all throught junior high and high school. I swore that I would never smoke, seeing how ill my mother was all the time. Hind sight is 20-20. I did not smoke when I was pregnant. Didn't want to hurt the baby. She wound up terminal with a rare genetic disease. I would never carry another child. We adopted. Back to smoking. Now, I'm fifty-nine years old, five years shy of my mother's end. She did not smoke the last five years of her life and she still died miserably, begging for sweet air. Back to the part of me saying I do little for me. I like to smoke, I really do. Everything enjoyable to me includes smoking;I'm a creative non-fiction writer, an avid reader, a gardener, a small animal tender, inside and out. I quit smoking in the house in 1997, when my husband had his first heart attack. He quit smoking immediately then. He's since had another heart attack and a quadruple bi-pass. I associate smoking with pleasure, when I allow myself the time. My MD said I have to re-think my philosophy related to pleasure, that I can still enjoy what I enjoy without cigarettes. Makes sense, yes, but I still crave the activity. I don't want nicotine to replace nocotine, as in gum or patches. Been there with the gum, disgusting! Does the phrase, "If it hurts when you do that, don't do that," make sense? I still want to smoke. I miss it. Even though I've cut back drastically, for me, I'm constantly preoccupied by wanting to smoke. I could sit down and smoke my ten cigarettes all at one time and want more. I feel like I'm doomed. I sure do behave stupidly for someone who is so logical about every aspect of her life except this, especially when I have a husband of forty years and a thirty-year-old son begging me to quit. Perhaps, I haven't prayed hard enough. Just quit, everyone says. I'm glad I never did drugs. I'd probably be living in a refrigerator box. Bet I could breathe though. Thanks - Frustrated wife and mother in Kansas
I know it seems insane that I still want to smoke, when at times I can barely breathe. More insane that as soon as I take a nebulizer treatment, I think, "Wow, now I can smoke!" I am down from a pack and a half per day, for forty years, to an average of ten cigarettes a day. My 02 sats are running from 85-87 at sleep, so they put me on 2 liters of O2 at nightime. My mother died at age 64 of COPD, emphysema, and congestive heart failure. So far, my heart is fine. I am on atenolol for blood pressure and increased heart rate, following an incident of hyperthyroiditis in 2001. Supposedly, I have emphysema, as well. This is where I am having trouble. I do little for myself, having been a caregiver all my life, or as long as I have memory. (Oldest daughter of a large family, and a people and animal rescuer.) I did not smoke til I left home and began at tech school while in the military. I was odd "man" out at break. It seemed innocent enough. I had been an athlete all throught junior high and high school. I swore that I would never smoke, seeing how ill my mother was all the time. Hind sight is 20-20. I did not smoke when I was pregnant. Didn't want to hurt the baby. She wound up terminal with a rare genetic disease. I would never carry another child. We adopted. Back to smoking. Now, I'm fifty-nine years old, five years shy of my mother's end. She did not smoke the last five years of her life and she still died miserably, begging for sweet air. Back to the part of me saying I do little for me. I like to smoke, I really do. Everything enjoyable to me includes smoking;I'm a creative non-fiction writer, an avid reader, a gardener, a small animal tender, inside and out. I quit smoking in the house in 1997, when my husband had his first heart attack. He quit smoking immediately then. He's since had another heart attack and a quadruple bi-pass. I associate smoking with pleasure, when I allow myself the time. My MD said I have to re-think my philosophy related to pleasure, that I can still enjoy what I enjoy without cigarettes. Makes sense, yes, but I still crave the activity. I don't want nicotine to replace nocotine, as in gum or patches. Been there with the gum, disgusting! Does the phrase, "If it hurts when you do that, don't do that," make sense? I still want to smoke. I miss it. Even though I've cut back drastically, for me, I'm constantly preoccupied by wanting to smoke. I could sit down and smoke my ten cigarettes all at one time and want more. I feel like I'm doomed. I sure do behave stupidly for someone who is so logical about every aspect of her life except this, especially when I have a husband of forty years and a thirty-year-old son begging me to quit. Perhaps, I haven't prayed hard enough. Just quit, everyone says. I'm glad I never did drugs. I'd probably be living in a refrigerator box. Bet I could breathe though. Thanks - Frustrated wife and mother in Kansas
I have read all these stories and I don't understand my mom is 62 yrs and in final stages of COPD she has ceizors, trimmers shakes very seriouse trouble breathing yet fighting she has hospices but will never return to a hospital. yet all i see is positive replys thats great but get the real truth on COPD and the facts on how it does and what a daughter or son has to deal aith this i am the only child i have done so much studing on this COPD and to tell the truth each person is different but it is nothing like what i see or read. i have no clue what to expect or the next phase and i pray every minute that i can just know what is next so i can deal and handle it with my mom so what im saying is no-one is telling the truth cause no-one relly knows much on the last, final stage of this diease.. Thank you
Dear Brendale,
My name is Lori. Jane asked me to respond to you as I lost my dad in 2003 after a 13 year battle with COPD/Emphysema. Throughout my dad's years with COPD, there was no information, I should say not much information available about COPD. My family had no clue as to what this lung disease was all about and how my dad should take care of himself to have a better "quality of life".
I have so much I want to say to you, that I'm not sure which direction to go in.
Every individual living with COPD does live and cope with the disease differently.
Yes, there are many people doing very well coping with the disease. I have been involved in many COPD events and am amazed when I see these individuals out and about, so involved... using their oxygen.
But then there was my dad who was absolutely scared to death. And he had every right to be, I cannot imagine not being able to take a deep breath.
God rest his soul, my dad was a very stubborn man. He only used his oxygen at night when he felt like it; although he should have been using it every night. Dad actually should have been on oxygen 24/7, but again, refused to let anyone see him with it on. Therefore was seriously always SOB.
He did go to respiratory therapy classes for probably 2 summers and then stopped. He did not exercise much at all because he was so afraid of his SOB. To be honest, when I would call and he'd answer the phone and be so out of breath, I would tell him to "sit down and relax", when if fact, if he would have kept up with his pulmonary rehab, and used his oxygen his muscles tone would have been stronger which would have helped his breathing; as he would not have had to exert himself so much. Does that make sense?
Dad also got alot of respiratory infections which he would be rushed to the hospital for. These infections took alot out of his lung capacity. Dad was also rushed to the hospital many times with acute exacerbations.
Three months before my dad passed away (which we had NO idea he was that bad), I finally went to his dr. appointmend with him and my mom. They had never asked any questions. I had begun looking up information on the internet and passing it onto my dad. So, I began asked dad's dr. several questions. The dr. never really answered my questions in a straight forward manner. Basically beating around the bush.
But when I asked the dr. what stage COPD my dad was in, he said, "the end stage". I'll never forget those words. We were stunned... again, we had to idea dad was that bad. Yes, his breathing was very bad, he was weak, did not eat very much and rested most of the time. But it was still a shock, and the dr. had NO advice as to how to help dad's "quality of life" at this point. He had no advice at all.
Dad went on life as usual until the 2nd week of December, when mom rushed him to the hospital with an exacerbation. As it turned out they had to put dad on a ventilator and 2 weeks later we had to make that heart wrenching decision to take him off the ventilator.
Dad had picked up another respiratory infection that was just too much for his lungs to handle.
It was at that time, I knew I had to learn more about this disease and help others learn and cope with it. I joined the American Lung Association, I joined Jane Martin's website BBLW and launched my own website, www. loveyourlungsbreatheforlife.com.
Brendale,
I don't know how much I have helped you with my comment. I'm not a dr., RP i'm a daughter that lost her loving dad and now volunteers to help patients and families cope with COPD. I believe you have to look at every individual separately, because you don't know their whole story. You may just hear their "up" days and not their "down". I know it bothers me when I hear the commercials for COPD on TV. Let me rephrase that... I am thrilled that info about COPD is getting out to the public but on the other hand, the commercials come across as... "use this medication and you will be fine, out playing football with your grandson!".
Have you written down your questions and talked to your mom's pulmonologist?
Is your mom on oxygen 24/7, can she do any type of activities at all?
I honestly have not read much about End Stage COPD, possibly because i'd rather help patients with their "quality of life"... that I block the "end stage" section out of my research.
Please write to me either through Health Central or you may contact me on Facebook.
Love & God bless,
Lori Palermo
my mum has copd but she has only got one lung she is realy struggling the doctor dont seem to be able to do anything for her
Dear Bet,
No doubt, your mom is struggling. I'm sure this is hard on you, as well as it is on her. I'm glad you found this site and are reaching out for support.
Would your mother consider seeing another doc for a second opinion, just to make sure there's nothing more that can be done to help her? It's tough to think there is just no more help.
Keep on learning and reaching out, Bet. It's comforting to know there are others out there with similar concerns.
My Best,
Jane.
http://www.breathingbetterlivingwell.com
Thank you so much for this article. Here I sit reading it at 3:00 a.m. because the stress and the unknown has been keeping me from sleeping. It actually has been keeping me from normal life functions. Like working and cleaning house & maintaining healthy relationships. I do not have insurance & have trouble getting treatment & advice. I am a 52 year old female & was diagnosed about a year ago. Just recently had a Pulmonary Function test with results of 28%. I can't help but wonder daily--how much longer am I gonna live like this & how bad will I suffer before the end? Your article has given me hope. I just have to figure out how to pay for some good advice & treatment. I would give anything if I would have never smoked a cigarette!! How expensive is treatment? My inhalers alone cost over $400 per month. The free clinic I go to is not much help at all.
Dear Melanie,
I'm glad you found this site and so glad you found my article helpful. I'm sorry to hear you're under such stress. Sounds like you're just tied up in knots! That's hard on the breathing, too.
You say you're only 52. You don't say which number on your lung function test is 28% but if it is the FEV1, that is very low. Do you have a history of others in your family with breathing problems? Have you been tested for Alpha-1 Antitrypsin Deficiency? That's emphysema / COPD you inherit genetically. You're awfully young to have that lung function.
You have some good questions. Check with your doctor, also, about referring you to Pulmonary Rehab. There you can improve your energy and fitness under the watchful, caring eyes of experts in helping people exercise with shortness of breath. You can learn to do everyday tasks with less shortness of breath and find ways to cope with the uncertainty of this disease. Costs vary, but an entire course of Pulmonary Rehab costs a fraction of one hospital stay for COPD. A good investment.
Would you consider going on Medicaire Disability, in which case most of PR would be covered. With no insurance, there may be funds available to help you pay for preventative programs such as this. Also, check with the Partnership for Prescription Assistance (www.pparx.org). I understand that once you get through the paperwork, it really can help a lot.
Melanie, I wish I could help you more. Just hang in there and keep asking questions and connecting with those who understand. The folks here are very nice and also I invite you to check my site, below, and go to "Community."
My Best,
Jane.
http://www.breathingbetterlivingwell.com
Dear Melanie,
I'm glad you found this site and so glad you found my article helpful. I'm sorry to hear you're under such stress. Sounds like you're just tied up in knots! That's hard on the breathing, too.
You say you're only 52. You don't say which number on your lung function test is 28% but if it is the FEV1, that is very low. Do you have a history of others in your family with breathing problems? Have you been tested for Alpha-1 Antitrypsin Deficiency? That's emphysema / COPD you inherit genetically. You're awfully young to have that lung function.
You have some good questions. Check with your doctor, also, about referring you to Pulmonary Rehab. There you can improve your energy and fitness under the watchful, caring eyes of experts in helping people exercise with shortness of breath. You can learn to do everyday tasks with less shortness of breath and find ways to cope with the uncertainty of this disease. Costs vary, but an entire course of Pulmonary Rehab costs a fraction of one hospital stay for COPD. A good investment.
Would you consider going on Medicaire Disability, in which case most of PR would be covered. With no insurance, there may be funds available to help you pay for preventative programs such as this. Also, check with the Partnership for Prescription Assistance (www.pparx.org). I understand that once you get through the paperwork, it really can help a lot.
Melanie, I wish I could help you more. Just hang in there and keep asking questions and connecting with those who understand. The folks here are very nice and also I invite you to check my site, below, and go to "Community."
My Best,
Jane.
http://www.breathingbetterlivingwell.com
Melanie - where do you live at? Did you check with you county representative in your area. When I was in your predictament, prior to Medicare, my county representative suggested a health consortium where payment is done on a sliding scale. A lot of patients pay "0" and they give free samples of meds that they have available to help those that cannot afford their medications. Not to mention the makers of the meds will help as well. This consortium is not the health department. I'm at 24% as well and on 14 meds a day including oxygen 24/7.
Let me know if I can help you - I would be glad to do anything I can to assist in some way for you to get help...
Terri
Melanie - where do you live at? Did you check with you county representative in your area. When I was in your predictament, prior to Medicare, my county representative suggested a health consortium where payment is done on a sliding scale. A lot of patients pay "0" and they give free samples of meds that they have available to help those that cannot afford their medications. Not to mention the makers of the meds will help as well. This consortium is not the health department. Have you applied for your social security disability?
I'm at 24% as well and on 14 meds a day including oxygen 24/7.
Let me know if I can help you - I would be glad to do anything I can to assist in some way for you to get help...
Terri
My Grandmother has 'End State COPD' and is currently at 13% lung functionality. We were told 4 years ago she had 'End Stage'. She is still at 13% and over the past 4 years has gone to the hospital one time. She manages on at home oxygen flow as well as nebulizers, anxiety pills and steroids. She gets out of breath easy, when talking, chewing, changing clothes or walking. However, she pushes herself, everyday she complains about how hard it is to breath; but even though she complains she pushes herself to eat, walk, chew, talk and complete day to day tasks. Its very hard but I believe her strong will is what is keeping her alive today. We have hired someone to come in for 5 hours a week to do her laundry and keep down on the dust. Also have Meals on Wheels deliver her a hot healthy meal every day. When she does catch a cold it takes longer to get over than an average person it can take her a month or so to rid the cold. In order to keep her quality of life up we still take her to the store, out to dinner, or shopping. Except for out to dinner we use a wheel chair or an in store scooter. I wonder every day when she complains is this it; is she getting worse? But it never happens... She is a strong woman.
Dear Strongwill,
Thank you so much for sharing this story! I am inspired!
The fact that your grandmother has 13% lung function and has been hospitalized only once within the last four years is a testament to her good care - and her strong will! From the sound of your letter, your grandmother still lives in her home, but is getting the support she needs with household tasks and meals. Individuals with low lung function, as you point out, have trouble just talking and eating, and they simply don't have the energy or the breath to prepare meals. Providing good nutrition that is easy to eat and digest keeps those calories going in while she is expending a lot of calories just to breathe. Just as important, the fact that you spend time with her and get her out of the house adds to her longevity, giving her something to stimulate her and look forward to.
However, your grandmother herself often says that breathing is very difficult. She is probably tired much of the time and there may come a time when she just decides that even with all this good care and support, she has done the best she possibly can and she may be reaching the end of her time on this earth. If that time comes, you and her loved ones may have to put aside your desire for her to live forever and respect her decision to step aside, allow her body rest and let nature take its course. Nobody but the person with COPD can imagine what it's like to fight that battle everyday.
Strongwill, thank you again for sharing this story with us! I wish for you, your grandmother, and your loved ones all the very best for many days of health and happiness ahead. Do the best you can to cherish each and every day.
Jane.
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This is an excellent article. My doctor wasn't forthcoming with much information after he diagnosed me as being "very severe". I really appreciate articles that are truthful and remind me that there is still life after learning that we have COPD. Thank-you, Jane.
I feel much better after reading your article. I felt that my days were numbered after the Dr. told me I had end stages of COPD. That is very drepressing and I am looking forward to reading your future articles.
Patricia
You're welcome, Eileen. Thank you for your comment. You're right. Many docs just give the patient that diagnosis and then send them on their way. I know firsthand that life is not over, there is a lot that can be done. At my job we do it, and I love what I do!
Thanks again!
Jane.
Hello Patricia,
I'm glad you're feeling better! So many people feel exactly the way you did. Sure, severe / "end stage" COPD is serious -- very serious -- but that doesn't mean you still don't have a lot of living to do. Keep on reading and learning, and take a minute to visit my website where we say, "It's not all about being sick. It's all about living!" I look forward to writing more about this subject and hearing from readers.
Jane.
Thank you for responding. I have been struggling the past 6 months. I can't even get dressed most days or even brush my teeth and yes struggle to eat somedays. But, I refuse to give up. There has to be hope somewhere. My mother just passed a month ago from COPD and CHF. She had given up, she was tired and had been in the hospital so many times the last 2 years..I'm hoping for a better outcome.
Dear Patricia,
Sounds like you're really struggling, but you have a wonderful spirit! Is there a pulmonary rehab program near you? If you can get over there, they will do their best to help you.
There is a lot of information on this site and also on BreathingBetterLivingWell. If you go back and read my posts here on Health Central, you'll find information about breathing techniques, choosing a doctor, and all kinds of things to live with COPD. Keep on learning everything you can -- and stay connected to others who are going through some of the same things you are.
Hang in there!
Jane
http://www.breathingbetterlivingwell.com
This is for Patricia. My name is Cynthia. I have emphysemia and was given 6 months to live 2 weeks ago,,,I am in desperate need to have someone to talk to,,,someone who understands,,,I have been going through this site and have discovered that it is not a death sentence,,,that I can live for years,,,Thank you God,,,If you want to chat my e-mail is aquamarinejmbs@yahoo.com. Hope to hear from you. Thanks
in 2000 I was told I had end stage emphysema. I'm still here.
Oh, I've had some scary times recently. A week ago I (and my
husband) did not think tomorrow was on my agenda. I sat there
on the couch, very upright hardly able to breathe and realized that
other than being scared by not being able to breathe and the
"unknown" of what to do, I was also mentally crippled by not having
any hope.
Hello Cynthia, my name is Pam, and I'm in final stages of copd and I'm scared and need someone to talk to. I have so many questions that the doctors don't have answers for. I have a wonderful family, but unless someone is going through what you are they can't really advise you on what to do. I have to make some decisions in the next few weeks and I'm too scared right now to make a choice. I'm only 54 years old and I don't want to die. I will appreciate help from anyone.
Dear Pam, Cynthia, Dabardi, Patricia and others who have commented....
Thank you for being courageous enough to share your thoughts and fears regarding "End Stage COPD," what it means to you and how such a diagnosis affects you and those you love.
Now, to all the others out there....Please....whatever you do.....don't give up! I'm here to tell you that as a respiratory therapist working with people with severe, very severe, "end stage" COPD....whatever you call it (or whatever your doctor has labeled it), I'm here to tell you that there can be many years of life with this level of COPD! It might not be exactly the life you had before you were diagnosed and limited by this disease, but it can still be a good life! A happy life. A life with hopes and dreams. A life with joy and laughter.
I'm so glad you found this COPD site on Health Central, but more important that you are reaching out to each other. There is a whole world out there, with millions of kind, understanding and knowledgeable people with COPD who are ready to help you. You are finding them here on this site and there are other sites as well with lots of help and support.
Don't let the words "end stage" take you down. We're here to lift you up. Learn, share, and reach out to support each other. We're here for you.
Jane
Jane M. Martin, BA, CRT
http://www.breathingbetterlivingwell.com/community.php
Dear Jane, thank you for your reply. I'm feeling pretty hopeless right now and the last couple of weeks my fear of dying seems to have taken control of my life. I pray every day that God will give me peace of mind. I feel a little uncomfortable sharing my feelings with people I don't know, but there's some things I'd rather not tell my family. But I'm hoping this site will help me find answers that only people who are going through what I am, will know.
Dear Pam,
Hang in there! In addition to encouragement from the folks here on Health Central, another place to find understanding and information is on my website community page. We have a variety of forums staffed by a team of people with COPD. Please check it out. I know you'll find it helpful. Don't give up. There is help -- and hope!
Jane
http://www.breathingbetterlivingwell.com
Click on "Community." Registration is easy and as I said, our staff is wonderful.
hello - like many of you, I was diagnosed with end-stage COPD/emphysema. That was in 1999 when I was 46 years old. The most important thing I did was to find a pulmonary rehab program. What a difference that made! While my disease did not get better, my body DID and I was better able to live a "normal" life. I continued to do everything for myself including all the housework (except the floors) and all my own shopping, etc. A little slowly, but I got it done. A year ago I had a single lung transplant. I no longer need oxygen and I am in super shape.
"End-stage" is not a death sentence -- it's an invitation to live!
Dear Merry-FL,
Thank you for sharing this. Wow! I love your last line: "It's not a death sentence -- It's an invitation to live!" Words for us all to live by, no matter what our challenges may be.
All my best,
Jane.
~~~~ Don't ever give up hope -- I had 2 doctors predict my end would be 2002 & I'm still here as I became so depressed by them I quit going to them & I started with a family doctor in my town & he is wonderful - - All specialists aren't that great !! - - they had me on so much prednisone that had I stayed with either I would probably be gone due to the effects of that med - - - anyway, try to maintain as positive an outlook as you can - - eat well, sleep well & don't push yourself - - do the pursed lip breathing which will help a great deal & will become automatic in time - - I am also the primary care giver for my husband who has pancreatic cancer so it's a very stressful situation in this household but we manage - - I do hope the responses you get from this do help & encourage you in your quest for an answer to getting more quality into your life - - -
Cynthia:
The best thing you can do for yourself is get involved with others that have your disease. Get to pulmonary rehab if possible. It will do wonders for your attitude not to mention your breathing. a year ago I went into respitory failure and was in intensive care for 15 days, a breathing machine 5 days, and had a trach, followed by 2 weeks of a rehab hospital because I was too weak to get up to go to the bathroom. Well I started the rehab there and have not stopped since. I very much have more bad days than good days but I am always at rehab even if I have to limit the amout of exercise. The people there are my friends and in the same boat as I am. It makes me more satisfied to visit, compare feelings, and get some exercise.
Hi
I am Pattie I am 56 and I have COPD, Emphysema and Chronic Bronchitis.
I also major back problems inherited from my mom and getting hurt at work a long time ago. And because of all the steroids I have to take,I will undoubtedly get diabetes my last test was 192.. before that 163....but I pray not, but my dad had that.
My primary Dr is 83 and I have been seeing him for 9 years. He never told me I had COPD. He called it Adult Asthma. Although I am sure that we both knew what it was.
I have to say that I love my primary Dr. even though there are those that tell me that I need to get another one. I do have a pulmonary Dr. and see him when I really need to.
I have hurt so bad and for so many years, that I have been on pain medication for a long time. He is so good about trying to make sure that I am not in a lot of pain. I don't want heavy narcotics like morphene or methadone or anything that puts me in la la land. I've taken the same thing all this time so I am probably intolerant to it, but it still takes the edge off the pain.
I also am ADHD diagnosed as a child, but never was medicated for it. And he and I discussed the possibility of my having sleep apnea.
Let me tell you, I am a real text book case ha ha ha Not really funny, but I am sure there can be some humor found in this.
But if you want to chat sometimes my email is psa1954@gmail.com
take care and do not give up., there is no end to what a person can do if they have hope!!!! Pattie
Hi
I am Pattie I am 56 and I have COPD, Emphysema and Chronic Bronchitis.
I also major back problems inherited from my mom and getting hurt at work a long time ago. And because of all the steroids I have to take,I will undoubtedly get diabetes my last test was 192.. before that 163....but I pray not, but my dad had that.
My primary Dr is 83 and I have been seeing him for 9 years. He never told me I had COPD. He called it Adult Asthma. Although I am sure that we both knew what it was.
I have to say that I love my primary Dr. even though there are those that tell me that I need to get another one. I do have a pulmonary Dr. and see him when I really need to.
I have hurt so bad and for so many years, that I have been on pain medication for a long time. He is so good about trying to make sure that I am not in a lot of pain. I don't want heavy narcotics like morphene or methadone or anything that puts me in la la land. I've taken the same thing all this time so I am probably intolerant to it, but it still takes the edge off the pain.
I also am ADHD diagnosed as a child, but never was medicated for it. And he and I discussed the possibility of my having sleep apnea.
Let me tell you, I am a real text book case ha ha ha Not really funny, but I am sure there can be some humor found in this.
But if you want to chat sometimes my email is psa1954@gmail.com
take care and do not give up., there is no end to what a person can do if they have hope!!!! Pattie
Hi
I am Pattie I am 56 and I have COPD, Emphysema and Chronic Bronchitis.
I also major back problems inherited from my mom and getting hurt at work a long time ago. And because of all the steroids I have to take,I will undoubtedly get diabetes my last test was 192.. before that 163....but I pray not, but my dad had that.
My primary Dr is 83 and I have been seeing him for 9 years. He never told me I had COPD. He called it Adult Asthma. Although I am sure that we both knew what it was.
I have to say that I love my primary Dr. even though there are those that tell me that I need to get another one. I do have a pulmonary Dr. and see him when I really need to.
I have hurt so bad and for so many years, that I have been on pain medication for a long time. He is so good about trying to make sure that I am not in a lot of pain. I don't want heavy narcotics like morphene or methadone or anything that puts me in la la land. I've taken the same thing all this time so I am probably intolerant to it, but it still takes the edge off the pain.
I also am ADHD diagnosed as a child, but never was medicated for it. And he and I discussed the possibility of my having sleep apnea.
Let me tell you, I am a real text book case ha ha ha Not really funny, but I am sure there can be some humor found in this.
But if you want to chat sometimes my email is psa1954@gmail.com
take care and do not give up., there is no end to what a person can do if they have hope!!!! Pattie
hon how are you doing now
I woke up in Oct 09 after being on a vent x 5 day=OMG so scarey I am 53 work full time at my hospital -I find it hard to leave my desk even to go to the bathroom-it is so very scarey-PFT's show 10% or less funtion-I do not wear my O2 at work but have it close by-it is so very scarey-after the vent episode I have more troubles beathing now
I woke up in Oct 09 after being on a vent x 5 day=OMG so scarey I am 53 work full time at my hospital -I find it hard to leave my desk even to go to the bathroom-it is so very scarey-PFT's show 10% or less funtion-I do not wear my O2 at work but have it close by-it is so very scarey-after the vent episode I have more troubles beathing now
Hello Linda, I am still hanging in there. I have been stressed this past month and have had many problems due to my husband being in the hospital for a month and just passing 8/23/10. He was my rock, my pillar of strength. So now is my test to try and do more things for myself. I'll need all the prayers I can get.
Linda Thank you for asking.
Pat
Hello Linda, I am still hanging in there. I have been stressed this past month and have had many problems due to my husband being in the hospital for a month and just passing 8/23/10. He was my rock, my pillar of strength. So now is my test to try and do more things for myself. I'll need all the prayers I can get.
Linda Thank you for asking.
Pat
My husband just went through a complete phys last week. In the process he had a series of X-rays a CT scan as well as a small battery of breathing tests. The results were not good.
He has a FEV percent of 47 and lung age of 103 as well as prominent Bi-basilar markings on both sides. Just got the figures today so I am still trying to peice it all together.
We're hoping to get an appt. with a regular physician in a few week. A lot of this is very confusing but the article did an amazing job of actually making sense! I am very very worried still but at least when I get in the office I will have a slight understanding and preparedness for it.
At least I now know its not the end of the world and I will not be a 42 year old widow with 4 children! (he is a 41 year old smoker) (maybe soon to be ex smoker? )
I worry about his job though he is a mechanic on locomotives and I am not sure if his working is going to be poss with this.
Thank you for posting this forum :D Tina
My husband just went through a complete phys last week. In the process he had a series of X-rays a CT scan as well as a small battery of breathing tests. The results were not good.
He has a FEV percent of 47 and lung age of 103 as well as prominent Bi-basilar markings on both sides. Just got the figures today so I am still trying to peice it all together.
We're hoping to get an appt. with a regular physician in a few week. A lot of this is very confusing but the article did an amazing job of actually making sense! I am very very worried still but at least when I get in the office I will have a slight understanding and preparedness for it.
At least I now know its not the end of the world and I will not be a 42 year old widow with 4 children! (he is a 41 year old smoker) (maybe soon to be ex smoker? )
I worry about his job though he is a mechanic on locomotives and I am not sure if his working is going to be poss with this.
Thank you for posting this forum :D Tina
Hello, My mother is 71 and has end stage copd. She is in the hospital right now and has been there for a month. Right now they have trached her and is on a vent. She is not responding and has been sleeping almost all the time. Her co2 level is ranging from 80%-100%. They have tried to ween her off the vent a few times but not being successful. I feel that this could be coming toward the end of her life. The Dr. said that he didn't see her getting off of the vent. I would like to know if it is what to expect from here on what will happen.
Thanks
Dear Chris,
It sounds, indeed, that your mom is really depending on the ventilator right now. A CO2 (Carbon Dioxide) level of 80-100% in the arterial blood, if that's what you're referring to, is very high. High is not good. I don't know what this means for your mother in the hours and days to come, but I can say that this sounds very, very serious.
You might consider asking the staff, your mother's doctor, a trusted nurse or respiratory therapist, to be honest with you and give you some idea of what to expect -- Should you call in other family members to come in and see your mother, should you call in a pastor, priest, or rabbi to pray with your mother and counsel your family, or should you even consider moving her to an environment with care and comfort measures only? Medical staff avoids giving advice like this many times, but you can ask this: "If this were your mother, what would you do?"
I'm sorry you're going through this very difficult time. May you find some answers and be in peace.
Jane.
Hi Chris, I am sorry to hear about your mother. I experienced that with my mom last December. Truly it is not good news, but I pray that you experience God's mercy and somehow your mother pull through this. Just to share, my mother was 70 when told she was endstage (May 2009). She passed 3 days before her 71st birthday (December 2009). Whatever happens, I'm here if you need to talk, I went through this with her as you are doing now. Be strong. If you need to talk, you can e-mail me at gezuz05@aol.com.
Thank you all for posting and to you doc for letting us know that there is life after being dignosied with copd
I've just lost my youngest sister to cancer and the news that my partner has copd and that her "numbers" meant she didn't have long shocked and scared the pair of us half to death we thought she only had months
for the last few days we have done very little other than to discuss her possible end and how scared she was
with this site i can now try to convince her we do still have many years to look forward too
Dear Paul,
I'm sorry to hear of your loss. And now a diagnosis of COPD with low numbers. Your head must be spinning. But I'm glad you've found hope here. You can also go to my website (URL below) for more information and help and support in our wonderful community. Check it out.
I don't know if you have pulmonary rehab in your area, but I'd strongly encourage you and your partner to check on it and see about enrolling. It could make an enormous difference in strength, endurance, confidence and well being.
Best Wishes and Blessings to you both,
Jane.
http://www.breathingbetterlivingwell.com
Hello everyone...I also have COPD that my specialist said was "the worse case of COPD he had ever treated in his carrier." But, let me tell you some facts. I am 68 years old amd the very first male in our family to have ever had a 55th birthday! Every male before me died before reaching 55. Heart attacks!! Heart disease, heart failures. I have a bit of high blood pressure but didn't start doctoring for that until I was 66. So,after suffering for a few years with shortness of breath, I was finally sent to a specialist. The medicines he prescribed completely turned my life around so there IS life after finding out you have COPD. God Bless every one of you
j. michael
Dear j.michael,
It's great to hear you're doing so well - in spite of severe COPD. Thank you for sharing this with us. I don't know about anybody else out there, but you made my day! I'm sure this will inspire folks to do all they can for themselves, keep a positive attitude and not give up!
May you have many great days ahead!
Jane
http://www.breathingbetterlivingwell.com
Dear J Michael, Glad to hear you are doing well. I too have severe copd. Much to my Doctors suprise I don't need oxygen yet, even though my levels are low. I go to pulmanary rehab, which is wonderful, plus i am busy raising my grandaughter which keeps me moving...you know those pre-teens. Hopefully someday they will have a cure. There are many ways Doctors are using stem cells also ones own cells. Good Luck to you and "Keep Moving". Betty
Hi Betty....funny you would mention grand children...2 of ours,,aged 2 and 4 have just been placed with us by the Child protective services due their their mother doing drugs. Although I am 68, my wife is 44 and works a full time job so guess who gets to watch the little ones? haha....but God gives us energy when we most need it! You be Blessed in all ways.
Dear cynthia & others with copd. My name is Helen, I just turned 49 the 1st of Oct. I was told I had very severe copd about Two months ago. MY FEV 1 was 21 and my FEV 1 % FEV was 35, right away my Dr wanted me in pulmonary rehab. Before I went to the Dr I couldn't walk 5 steps without having to stop to catch my breath. I am now on three different inhalers and started my rehab, I can't remember the last time I was able to play with my three beautiful grand daughters and not run out of breath. I am not on oxygen my levels are pretty good and don't need it for now and I'm hoping I wont for a long time. You know, only GOD knows how long we have so don't let Dr's or anyone tell you how long you have. If you can, try pulmonary rehab, it has really helped me. Heck, what do you have to lose.Try and stay positive, I know it's hard to do at times but we can't let copd take us without the biggest fight of our life. So for now live your life to the fullest the days you can, and for the days you can't, just rest and try not to push yourself maybe tomorrow will be a better day. We have earned the right to feel scared, sad and even mad from time to time, we just can't let it consume us or else that will be what kills us not the copd. Best wishes to you, take care.
Dear cynthia & others with copd. My name is Helen, I just turned 49 the 1st of Oct. I was told I had very severe copd about Two months ago. MY FEV 1 was 21 and my FEV 1 % FEV was 35, right away my Dr wanted me in pulmonary rehab. Before I went to the Dr I couldn't walk 5 steps without having to stop to catch my breath. I am now on three different inhalers and started my rehab, I can't remember the last time I was able to play with my three beautiful grand daughters and not run out of breath. I am not on oxygen my levels are pretty good and don't need it for now and I'm hoping I wont for a long time. You know, only GOD knows how long we have so don't let Dr's or anyone tell you how long you have. If you can, try pulmonary rehab, it has really helped me. Heck, what do you have to lose.Try and stay positive, I know it's hard to do at times but we can't let copd take us without the biggest fight of our life. So for now live your life to the fullest the days you can, and for the days you can't, just rest and try not to push yourself maybe tomorrow will be a better day. We have earned the right to feel scared, sad and even mad from time to time, we just can't let it consume us or else that will be what kills us not the copd. Best wishes to you, take care.
Hi j Michael, I'm sorry to hear about your daughter. I hope in time she is able to win over her addiction. How wonderful both you and your wife are to take care of your Grandchildren. I know how busy they will keep you, but at the end of the day those sweet faces and those hugs make it all worth it. Stay happy...........Betty
dabardi ... I know all too well about not being able to breath. I've had COPD for over 20 yrs and it has progressively gotten worse. I had a very bad breathing exacerbation 5 yrs ago and almost died and was in hospital and rehab for 3 wks. In the rehab facility I learned the "purse' breathing which really helps a lot when u don't know where your next breath is coming from. You breath in through your nose and slightly part your lips and breath slowly out your mouth. Also, the most important and critical thing is DO NOT PANIC.... try to remain calm. When you panic, your lungs tighten up and makes it that much worse to breath. I learned all this from my mistakes and want to pass it along. Have u asked your doc about oxygen therapy? I have been on it for the past 2 wks because of a bad bout with bronchitis. It really makes a lot of difference. I go back to doc next wk to c if he wants to keep me on it. God Bless you and hope my little bit of info will help you.
Thank you, Dori, for reminding us that pursed-lips breathing really works. It's good to hear that from somebody who knows.
I wish you all the best for more easy-breathing days and Happy Holidays.
Jane.
http://www.breathingbetterlivingwell.com
It was so good to read your advice on end stage emphsema. I have been so depresses lately with the diagnosos. It felt like a death sentence. Its so good to hear you can live a few more years, not like it was before but it can still be good. please keep in touch it is good to hear from people like yourself. katdanlucey@verizon.net
It was so good to read your advice on end stage emphsema. I have been so depresses lately with the diagnosos. It felt like a death sentence. Its so good to hear you can live a few more years, not like it was before but it can still be good. please keep in touch it is good to hear from people like yourself. katdanlucey@verizon.net
I also suffer from end stage emphsema and didnt know where to look for infomation. I spent tne whole afternoon reading your website and feel alot better now. Im trying not to get too down on this and yet must not deny what is happening to me. I will try to keep my spirits up and put my faith in Gods hands. I talk to him all the time and say when he wants Im ready but please not too soon. I really enjoy living although it is so resticted. Cant walk from one room to the other without a real wheezing bout.Dont go out ay all except for thedoctor. That wheezing is real scary.Thanks so much for your website katherine lucey
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Dear Katherine,
Thank you for this. I’m so glad my article is helping you feel more positive and hopeful. I’m more than glad – I’m thrilled… and honored.
I see in your words that you’re searching for that balance – staying positive, yet realistic. Not easy to do. I suggest you take a look at another article here at Healthy Central, one I wrote that was based on something written by Jo-Von Tucker, a lady with COPD. It’s about making peace with your COPD. Living With COPD: War or Peace? http://www.healthcentral.com/copd/c/19257/117788/peace-copd-choose
I’m concerned about your wheezing and your limitations. Have you talking with your doctor about referring you to pulmonary rehab? Also, pursed-lips breathing helps. Here’s a link to an article I wrote about that. http://www.healthcentral.com/copd/c/19257/18835/lip-pucker
Katherine, God will take you when it’s time, and not a minute before, so just do your best every day to breathe well and make the most of your life. And keep seeking help on sites like this, as well as my website that has a wonderful community of caring folks, too.
Take care, keep breathing, and stay in touch.
Jane.
http://www.breathingbetterlivingwell.com<!--EndFragment-->they say 6 months ibruise so easy and am getting weaker every day my concern is how long do i have
Hi all,
I have read a lot of the comments on this site, and taken great comfort from you all.
I was diagnosed with COPD about 4 years ago - I am a 45 year old woman, who has always smoked. (No longer!!)
I take Spiriva and Symbicort inhalers. Also, like most sufferers, I have a Ventolin rescue inhaler, due to there also being an asthma element.
In November 2010, I had a chest x-ray, which indicated opacites on my left lung. My GP feared that this was lung cancer, and sent me for an urgent CT scan.
The scan showed a scar from a previous infection - Phew!!! - Not cancer......
The wait for that appointment/result was the longest 2 and a half weeks of mine and my family's life.
I seriously thought that I was going to die.
I even chose my funeral playlist, as we all know that lung cancer has the worst prognosis of any other cancer.
I was so, so scared. I still am, because of COPD and complications.
I want to see my two sons grow up; my nieces, even the bloody cat!!!
Hey ho - they all let me play Take That now without moaning!! (The cat just ignores me as usual.)
I have found this really cathartic - thanks all.
Love you all. xxx
Hi Tracy,
Thank you for sharing your story. You're a very young lady! Sounds like you've got a great attitude.
A question: Have they ever said anything to you about Alpha-1 Antitrypsin Deficiency? This is a genetically inherited form of COPD. No doubt about it, smoking doesn't do our lungs any good, but when you're that young with COPD, the cause might be something other than smoking. Everybody with COPD should be checked.
All my best to you!
Stay in touch, Tracy.
Jane
http://www.breathingbetterlivingwell.com
i don't understand a lot about this copd...but i get scared too...when i can't breath i am on oxegyn..what do you mean about being on a vent for 5 days..what is a vent?????.i am 70 years old........................................................................maggie