How wonderfully compassionate this article was written. I am end stage and am only allowed oxygen because I still smoke. The doc says it is useless to give me meds since the smoking just negates what they do. Sometimes the pain in my right lung hurts awfully bad but I put a heating pad on and it helps sometimes. I hate to go to the hospital because they tell me as soon as they find out that I smoke, "I am sure glad I ain't dyin like you will." The respiratory therapists are nice and give me the breathing treatment with a smile and nice conversation. The nurses and doctors begrudgingly order the treatment and to give me some pain medication for the pain in my lungs. I know that I shouldn't be smoking. The COPD wasn't diagnosed until late in the game (I didn't have health insurance for over 10 years) and I feel like now that quitting now is like shutting the barn door after the horse has already gone and the doctors and nurses have made it clear to me that I am already a goner and not worth helping. I do have a wonderful husband that I know loves me and helps me endlessly. Without him I would be ready to go now. I also have the COPD support web sites that I go to, to kind of try to keep track of what is going on with my lungs. It does get a bit discouraging but at the same time it helps to kind of know what is going on. I have written my directives and put my husband in charge of my health decisions. The main want that I have is to not be in pain but am not sure if the doctor will honor that.
Hi , I have COPD and was an RN. I am so sorry you have been treated unkindly. Being in healthcare to me is like love. It should be unconditional. Not everyone has the insurance to make life easier, or the Dr. who does care and treats patients with dignity. I had a hard time trying to stop smoking. It has been 4 years and it has helped. I too am last stages of COPD. I hate that you have givin up. I thought about it, but my children and husband talked with me and I am going to give it my best shot. Others can't make a decision for you, they can only support you and tell you what is available. Having COPD is difficult to deal with and as a care giver I couldn't see me on this side of the illness. Anneyway, know there are others that feel like it is no use. At times I feel that way until I see the sun shine, a baby smile, my family laughing, then I know I am going to fight to stay on this earth as long as possible. Good luck, flynurse
Hello Flynurse,
Thank you so much for the encouraging letter. As I stated in my previous letter, my husband is my reason for continueing on. My children are grown and gone with families of their own. Sadly, we are not close but that is a whole other story. I have thought about what you said in your letter so I started thinking about the positive things in my life and was having a bit of a hard time until I looked out my front window and say my azelea bushes. They are so beautiful this year. Then I saw my lone daffodill, standing up and strong against such a hard rain that was happening at that time. I know it may sound strange to get encouragment from a flower but I have loved flowers all of my life. Even though I am no longer able to really garden anymore, I do have plants and flowers that I planted in previous years that come back for me to enjoy. Such a small thing, such a large influence. I also thought that if I were to have a project that I needed to finish it would help so I started making a quilt...a big one. I did feel better about the whole mess after I got the squares cut out and ready to sew.
I still wish that our medical community would deem it unethical for that patients to feel the sting of their own personal opinions. Perhaps they think that it will scare patients into submission. It doesn't. I just wanted to smoke a cigarette and relax after having to deal with them.
At any rate, I will continue on, though I doubt if I will accomplish stopping smoking but will have my time with my husband, my flowers and now a project that will take months to complete. Thank you again.
Annymay, Sometimes it takes a little rain to enjoy the sunshine. Your flowers are telling you to hold on just like they have since you planted them. I really know how hard it is to quit. I am forunate to have a sister that is a respritory therapist and children that encourage me everyday. Only someone that has been where we have understands the difficult time. Everytime I feel stress I want to smoke, that was my drug I guess. My husband supports me as well as he can. Some men just don't understand or show what they feel. I do have a child that is distant and that hurts but life is a choice. I love her she knows it and I can't deny my other children to please her. Maybe someday she will come home. I give things to God I can't fix. I hope we can continue to talk. It is nice to have someone who understands. flynursexoxoxox
Dear Annyway, Something I forgot to address is you don't have to suffer at the end. Hospice will make you comfortable and give you kindness and understanding. There is no need for pain. I don't want to get personel but you need a good Dr. because no one should say you are not going to make it. Shame on them. Horses can be rounded up. Just becasue they are lose doesn't mean they are lost. flynurse
My treatment at the end is of great concern to me seeing my treatment to this point. I don't know how to find a good doctor. Where I live it is hard to find a doctor that is taking new patients at all let alone one that has multiple problems as I do. It is very frustrating and does make me a bit gun shy about looking else where for a doctor, but I will look into it none the less. Yesterday was a bit difficult. It was one of those days where I was too tired to breathe so was tethered to my bipap machine most of the day. It did help and I do feel better today but I was bored to death just laying around. I thought that I might get back to doing some embroidery just for those days. It would at least keep my hands busy. Smoked 2 cigarettes all day yesterday. For me, that is unheard of. I have been praying that God helps me to stop smoking. I hope He hasn't decide that keeping me in bed is the way to do it. I have to smoke outside since my husband quit and of course now he doesn't like the smell and it bothers his heart and breathing so I don't mind.
Today, I am going to work on the quilt. The center of the squares is a printed fabric with small fish and fishing tackle. The colors in it are that Army green (I don't know how to spell "kacki"), barn read, camel tan, slate blue and a darker blue. For those of you who know quilting, I am framing the fish fabric in a log cabin form. It is the easiest and goes pretty fast once I got the strips cut out.
Are there any flower gardener's out there? I have a couple of places in my yard that are shaded all of the time. It leaves a big "hole" in the landscape. Any suggestions? I live in the pacific northwest, western Oregon to be specific. My friend planted some hosta's for me last years but something ate them down to the ground before I knew what was going on. The plants were checked for bug, spiders, and disease but there were none. It is a puzzlement!
Does anyone else's arms hurt when your breathing is a bit labored? I have had my heart checked in January and it is okay.
What are the meds that are used for COPD? I have diuretics that I take for my congestive heart failure but will they also help the COPD? Maybe if I go to the doctor armed with information, he just might give me the meds. I did find out though that if I take an antihisamine, just OTC and the store brand, it stops the rattle in my lungs and I am grateful for that.
Is your "flynurse" handle used because you get to fly in those rescue choppers? I have always wanted to ride in a chopper but for enjoyment and not a medical emergency. I would miss all the sites. 
I had better quit rattling on. How wonderful it is to be able to talk to others!!!! Thank you all so very much!!
My dear annyway, My husband is a retired National Guard pilot. I was just a regular nurse. Do you see a pulmonolgist? I don't even let my family Dr. treat me for this disease.
I too have congestive heart failure and take Lasix which does take the fluid away and helps breathing. You need breathing treatments at home. have you ever taken steroids? I feel so bad as I have such a wonderful dr. Along with the emphysema I have asthma. I take symbacort, spiriva which are inhaled. Lasix, colchicine for gout and osteoporosis. Prevacid for GERD . sounds like you could use some of these for sure.
So proud of you. Just 2 smokes yesterday. When I quit, I started by dropping to 3 a day. One after breadfast with my coffee, then at noon and then evening. Eventually I started feeling so much better I just stopped. Don"t be hard on your self. It takes courage and time to stop. Do it for you and work on it one day at a time. When I want one I ask God to help me.
Do you have medicare now? They will help with your meds and equipment. Get your Dr. to refer you to pulmomolgist please. With the meds, you could improve so much.
You said your husband is very good to you. Remember Love is not what makes the world go round; love is what makes the ride worthwhile. We can do this together my friend. xoxoBonnie
Annymay, We do have flower gardens. We lived on a farm for years. We had a man do grain farming. We sold it and moved into town and have a hugh yard witha lot of shade. It is so peaceful here. Hosta plants grow very well in the shade here. Would love to do more, but can't work in the garden like we use to. Ohio had a very hard winter this year like everyone else.
I don't like winter, but want to stay close to our children.
Again I am so proud of you. I know you are trying. That is all we can do. Trust me I fall short on something everyday. It is just part of life.
hugs and kisses, bonnie
Hey there Bonnie,
How great it is that you are from Ohio!! When I did my family tree I found that from Ireland my family all settled in Ohio, Akron and Ironton and later in Columbus to be specific. My mother was born in Columbus and still roots for the Buckeyes. What a small world we have.
I do have a pulmonologist. He seems nice. Right now he is pretty upset that my GP has taken me off warfarin since I have an extensive history of blood clots but he won't prescribe them himself so they have a battle of letters going on. I am afraid to ask him questions so I don't know my numbers and since being told I was end-stage I thought they didn't really matter anyway. How often do you see your pulmonologist? I see mine about every 4 months or so. I blow into a tube until I think I am going to pass out
and then wait for the doc to come in. He reads the monitor screen, askes me what he can do to help me stop smoking. One time I told him that I thought it would take cutting off my arms. He did get a chuckle out of that one. Anyway, I did quit calling his office when I had an episode or was feeling pretty bad because his office just refers me back to the GP. I must say though that I have been thinking about all of this and I really do need take hold of my health info and find out what is going on. I use to want to know when I was younger and still had some fight left in me. At any rate I started thinking as I said before and have discovered that alot of what is bothering me is the powerlessness that I feel. Whether having information to compare with help or not, I don't know but I really need to do something. I have an appointment next month with the pulmonologist. I am not sure what questions to ask, or even if I should bother, other that what my FEV numbers are. Should I ask what they mean or just come home and find out on the internet? Would you be willing to help me put together some questions to ask?
I found some dish towels and transfers to do some embroidery on. One is a set of birds and the other is butterflies, one for each day of the week. They will be perfect to do when I don't feel like being up. I do have a pillow that I have been working on for some months but it is very intricate and time comsumeing. These little towels are easier and less stressful. I will be finishing the pillow though it will just have to be when I feel good enough to really concentrate. It has lots and lots of split stitches to fill in the flowers with and it is exacting work. I still love it all though.
I called a nursery about my hosta's and they said that I probably have insects that live in the ground during the day. I have to treat the ground before I replant. Do you happen to know anything about Iris (flags as my mother calls them)? I need to transplant some somewhere. They were here when we moved here and there is a solid mass of them. They are the black and purple and are very beautiful but I am concerned that if they are not thinned something will happen to them. I think the lady that comes to help me might be willing to dig some up if I give them to her. Hope so.
Well, Have to go.
Blessings,
Annemarie
Dear AnneMarie,
You mentioned seeing the pulmonologist soon and about what questions you might ask him.
I suggest you ask him what your numbers are, even if he says you are end stage. I invite you read my articles here on End Stage COPD (you might have already, but it never hurts to read again -- there's a lot in there!) along with the comments from those who say they were encouraged. Numbers are just numbers. There are people in my program with an FEV1 of less than 20% and they're still going and enjoying life! :-)
I suggest, also, that you ask your doc about referring you to pulmonary rehab. It sounds like you have a lot of life left in you, girl! In pulmonary rehab you will find compassionate professionals who can help you, and friends who understand what you're going through.
Just don't ever stop trying to quit! Never say never!
I'm so glad you found us! You can also visit my website for more information and help from people in our community.
Hang in there, AnneMarie! And don't ever give up!
Jane.
http://www.breathingbetterlivingwell.com
Hi Annemarie, I read Janes' response and agree with her. I was thinking 1 week ago why try. My son went to the pulmon dr. with me and asked questions and made me realize how much they care.
When I quit smoking my kids did to. It was great. It took me a long time. My pulmonoligist doesn't mind me calling when I get sick he prefers to treat me. I feel very lucky. He has set me up with an allergy DR. and a rheumotoid Dr. for other problems and they work together. he is from Ohio State University. My GP told me last time there was nothing he could do and the hopital would only put me on oxygen which I have at home.
This is why you have to be involved with your care. Your Drs. should be concerned about you. If not we need to ask questions and show we want to make our health better. I will be starting rehab again and that is the best thing in the world. It does take time, but we have time in our day for ourselves to be better. Exercise and eating right are the two things that will help. Love and good friendships are icing on the cake.
I Have cateracts on my left eye and my vision isn't bad yet, but not good enough to do the embrodary and small things. I crochet and am working on a baby blanket in hopes for a great grandchild while I am still around.
Black and purple flags are beautiful. My husbands mother knew so much about them. My sister in law may know I will ask her. I use to plant and work in the flower beds, but when I got asthma it changed my going out when the temperature is up.
I see my pulmonary Dr. every 10-12 weeks. Last scan showed a nodule in my left upper lung and a nodule in the thyroid pressing on the esophagous. I have a hoarse voice. no magers problems. Anyway, I have to have a different test and maybe biopsy. I am not to worried. These can be in everyone. I don't feel sick. I do have discomfort in my left side, but it must be normal for emphysema. I need to ask that question too.
I think you should ask for spiriva and advair even thou you are smoking. He has to know that will help with your breathing. Ask him. They can't tell us when we will die, only God knows that. We can have more time if we fight this disease and I plan on doing just that. I don't think my mission on earth is done. Of course, I don't know what it is either. lol
Can't believe your mom lived in Columbus. The OSU basketball team is doing well. Our son graduated from OSU and so did my husband. It is a small world and sometimes we are lucky enough to meet nice people like you. Hope you have a great day. XOXO Bonnie
Hi Anyway, I have been reading your posts and I felt the need to jump in here. For one thing, i will certainly be praying for you and your addiction with smoking. I too was a smoker and I had to quit, I am not sure what your age is but I was 63 when I quit. For the last few years I have just been going to my regular doctor and people kept tellimg me I should go to a pulmonoligist, well I finally gave in as i have quite a drive to get to one....over an hour, but what a difference it has made in my life. Right now I feel like I am taking up most of my day for the things I need to do but it is all for the good and I do not have to go back for four months now. Please ask your Doctor or get on your computer and locate the nearest Pulmonoligist to you and GO!!!!
Hello Bonnie,
Thank you so much for your concern and suggestions. I have been having a terrible bout with depression for about the last four months. My husband took me to the hospital about three weeks ago. I just didn't want to be alive anymore. I was in so much pain from my low back and upper right side that it was hard to breathe and the more upset I got the harder it was to breathe. What a circle that was!!! The worst of it was the anxiety. I felt so tense I felt like I could jump right out of my skin. I have been working so hard to keep a positive attitude because I know that it is important for both mental and physical health but somehow it got away from me. The doc at the ER gave me some lorazapam for five days and told me to get into see my GP. So, I called my doctor's office and they got me in that afternoon. He raised the dosage of wellbutrin and gave me a prescription for lorazapam. He said to take it only when I was going to be awake and up and around. It is important because of the pain meds that I take. I could sleep through my lungs filling up with fluid which is a bad bad thing. He also referred me to a counselor who specializes in people who have chronic pain. I have an appointment for the day after Thanksgiving and am hopeful that it will help me manage all of this. I am still waiting for the wellbutrin to build up so that it will start to help me. In the mean time I do my best to stay calm and concentrate on getting better so that I don't feel so powerless. I think that is the main problem with me. I have always been one the "if something needs to be done then let's get to it", type of person. Now I look around as see everything that needs to be done and I can't do enough to keep up with it. That is when I feel the most useless. My home and yard has always been very important second only to my children. I was never afraid of hard work and now I can hardly walk across the living room. I just turned 56 on the ninth of this month but feel as though I am 90. I do have a pulmonologist but when the depression got so bad I didn't even have enough strenght to go to my appointment. He sent me a letter asking me to please come in so that he could take care of my conditions. But, what can he really do?? Honestly, what can he do? He can't cure me. He can monitor how I am doing but, as I see it, that is about all he can do. He is a wonderful doctor, he really is but there really isn't anything he can do to stop the heart failure or the COPD so what am I spending the money for? I did read an earlier posting and someone said to have him refer me to pulmonary rehab. That is a new avenue for me so I will make another appointment with him and get the referral. Something that has really been bothering me lately is that I feel like the doctor's are not telling me every thing. It could be from the depression. Well, I have moaned and groaned enough. I am going to hold on to the hope that the counseling will help. Thanks for letting vent. Anneymay
Dear Bonnie
My name is Helen, I'm 49 and have very severe copd. I'm going through a tough time as well. went to see my doc last wed so sick I wasn't sure if I could even make to see her. she asked me if I thought I was sick enough to go to the hospital. OF Course i said no, that I thought if she would give me some antibiotics and prednisone I would be ok. Well, I don't know if that was the right thing for me to do or not. I am feeling a little better but my breathing is still bad and I cough so hard everything hurts. I know how you feel, it's so hard at times to stay positive but that's what we have to do.I have three beautiful granddaughters five,three and one.I haven't been able to see them in over a week and that's rare for me. I have to get better so I can do what I do best, SPOIL,SPOIL,SPOIL. I also haven't been able to go to rehab and I do miss not being able to go. It makes you feel so much better not just physically but mentally as well.Be sure and ask your doc about it and go if you can.A
nyway, were all in the same boat and it's nice to talk with others who really know what your feeling and that understand.
Take care
Hello Helen, I am pretty concerned about how sick you are feeling and that you told your doctor that you didn't want to go to the hospital. Honey, nobody wants to go to the hospital but it is really surprising how just a couple of days there makes you feel so much better. I have the same problem with regard to going to the hospital. I just don't think that I am ever sick enough to bother the doctor let alone go to the hospital. I always think that there is someone else who is sicker than I am and they will need to be there more than I do. Well, let me tell you, having that attitude almost put me in my grave. I went to bed one night and didn't wake up in the morning until I was in an ambulance on the way to the hospital with sirens blowing. I had waited so long that my lungs were almost full of fluid and my carbon dioxide level was through the roof and my oxygen sat was in the low 80s. I had to spend almost 2 weeks in the ICU.
Your doctor would not have even asked you about going to the hospital if she didn't think you needed it. These days, with all this stuff of the patient making all the decisions, and the doctor just following what the patient wants is born out of all the malpractice suits. It is a way that they can say that they were just doing what the patient wanted and don't have to say that they recommended it to you. Now, if the doctor mentions the hospital I ask, flat out, what he thinks would be best for me since I am not a doctor and don't know everything. Sometimes he says that this can be taken care of at home if I have help or he says that if it were him, he would go to the hospital. Then I go to the hospital and I have never been so sick as I was before.
Just a thought that you may consider.
Anneymay
Anneymay makes some excellent points here.
People, generally speaking, do wait too long to go to the hospital. A lot of what I teach has to do with paying attention to early warning signs -- the key word is "early" -- so you can nip small problems in the bud before they become too big.
Another point you make, Anneymay, is about leaving a lot up to the patient. You're right. Docs seem to be doing that more these days. Here's a tip: When the doc seems to be leaving things up to you and you don't know what to do, gently ask the doc what he or she would advise if it were their loved one, their mother, father, sister, etc.
Helen, get the help you need. Please don't neglect yourself and put yourself at risk. I'm glad you're involved with pulmonary rehab. You're a young lady. I hope they've looked into testing you for Alpha-1.
Great discussion. Take care of yourselves, everybody. If you need more shoulders to lean on, more listening ears, in addition to coming here, you can also go to the Community forum on my website. Our folks there are wonderful.
Jane
http://www.breathingbetterlivingwell.com
The recognition and acceptance that acupuncture now enjoys in America can all be credited to acupuncture's consistent effectiveness. In particular as it pertains to COPD, there is enough clinical evidence to warrant the use of acupuncture in COPD. Acupuncture has been clinically shown to reduce shortness of breath, improve one's ability to walk, and to improve pulmonary functions testing, to include FEV, RV, and TLC. The use of acupuncture in COPD also contributes to a significant overall improvement in quality of life. In some instances, acupuncture may even help to improve one's condition enough such that pharmaceutical medications may either be lessened or possibly eliminated altogether.
Traditional Chinese medicine is based upon the principle that energy (qi or chi) in the body flows along a series of channels, known as meridians, that run throughout the body. When an individual is healthy, energy is flowing in a balanced manner along these meridians or channels. Consistent also with the concept of energy flow is that when a person is experiencing a diseased state, it is because the energy flow along the meridians has become blocked or disrupted.
Acupuncture involves inserting very fine needles into the skin at specific points that lie along these meridians so as to help rebalance the flow of energy (qi or chi) and promote health.
When performed by a licensed acupuncturist, acupuncture is essentially safe. Some individuals may occasionally feel a slight sensation of pain or bleeding at the needle site, but for the most part, when it is done correctly, acupuncture does not hurt. By using sterile disposable needles, which is for the most part the standard of practice today, infections will be avoided. Appendix 3 contains contact information for the American Association of Oriental Medicine, the Acupuncture and Oriental Medicine Alliance, the National Certification Commission for Acupuncture and Oriental Medicine, and Acufinder. These organizations are all well-respected professional organizations where you can find additional information about acupuncture and traditional Chinese medicine, as well as information on finding a licensed practitioner. Acufinder, in particular, has a very useful website with a lot of general information about acupuncture as well as an extensive database of licensed practitioners. I encourage you to consider using acupuncture as an adjunctive therapy for your COPD. Acupuncture and traditional Chinese medicine are very holistic approaches to healthcare and they will complement any other natural therapeutic protocols you are using. Remember also that most acupuncturists are also trained in Chinese herbal medicine, so you will not only gain the benefit of acupuncture itself but you will avail yourself of all the health benefits that can be gained through the use of Chinese herbs.
Read more: Natural Approach to Treating Emphysema and COPD http://www.acufinder.com/Acupuncture+Information/Detail/Natural+Approach+to+Treating+Emphysema+and+COPD#ixzz1C3j35X4d
please try a different doctor. i know what you are going through with the smoking thing, and yes it is closing the barn door after the horse is out, however closing the barn door does sometimes stop the pain on a minute to minute basis and can actually help with minor improvements. like you i have tried repeatedly to quit smoking, but (and this is no excuse), i have a husband that smokes(just diagnosed with copd, too) but i will continue to try to quit. i did quit for about 4 months this last year and even though the copd is not going away, i did feel it in my lungs that i was having less breatheless times, or at least a little more function. i am not at end stage,but severe. i go to the pulmonary dr. soon and would not be surprized to be put on oxygen and have more meds. i can only sympathize, however if you can change physicians and find someone who will not make you more depressed and leave you feeling more desperate that would help. i know changing doctors is difficult, but don't give up. i am glad you have a husband who is so supportive, that is a God sent. for pain with your lungs try moving your arms a bit, sometimes if you can swing them in circles, or lean face first up against a wall with your hands in front extends the muscles and lungs. my physician smoked until about 8 years ago and still chews gum(nicotine). he understands the pitfalls in trying to quit, and in smoking. he has been good with my starting up smoking again, a little sorry and continues to talk to me about it, he says i can take "Chantix" but to be honest i am afraid of the mood swing they say most get. half dozen of one, half dozen of other. i am glad you have good support and it upsets me that you have been treated so by medical communtity. you must try different dr. they may not be able to stop the copd, but they can sure be more aggressive in terms of meds and helping you attain more medically accepted standard of humane treatment. you are in my prayers.
Jane, what an encouraging message you gave us. As an RN and a patient with COPD, I have just started to realize how important rehab is and to be positive. Thanks for the reminder. Bonnie
Hi Bonnie, Annymay and Jane. What an awesome dialogue going on here.
I, too, am an RN with COPD. It was devastating to have to stop working but I have found ways to keep busy and helpful. I have an FEV1 of about 26% and have been to pulmonary rehab several times. I can't stress enough how much it helps. You exercise and learn how to strengthen your muscles so that they use oxygen more efficiently. It seems impossible at first because you can hardly breathe, but you work up gradually and it will amaze you. You also learn so much about how diet and stress affects your breathing and quality of life with COPD.
I am so sorry that your doctor and other healthcare professionals treat you so poorly, Annymay. It is wrong, wrong, wrong. Shame on them for withholding meds that can help you breathe better until you are successful at quitting smoking. I agree that you need another doctor who will treat you with dignity and respect. End stage, which I am also at, doesn't mean a certain death is imminent. I have been in this stage since my diagnosis which was 12 years ago.
One of my greatest gifts was finding this website:
BreathingBetterLivingWell.com
I found compassion and great information and a community of others who have COPD. Whether you smoke or not, you are treated equally. I have been a member for almost 5 years and post on the community forums every day. I also help to search for and post information that is current and relevant to COPD. We have wonderful features like Ask the RT (respiratory therapist). We carry on conversations like this all the time and it is such a wonderful feeling to know that someone else understands what we're talking about. You are welcome to become a member and join in.
Thank-you all for being so honest and open. I don't know anything about flowers but I manage to plant some herbs like chive and basil each year.
Eileen
Hello every and our new Eileen,
It is difficult to be an RN and know your future. I think God wants us to live in the present and take one day at a time. I just went to town with my husband and for some reason had a terriable time with my breathing. Somedays are just not as good as others.
I am glad you feel the same about Annemarie. It is so unfair. They take an oath to care for patients. I have never seem a clause that said if they smoke don't treat them..You deserve more annemarie
I found a site called Daily Strength that is good too. Very supportive. I spoke with a lady this morning on that site and had to stop because I found myself crying. I am not a cry baby. I think Hospice and nursing in general teaches us to be strong. I lost my brother to lung cancer last year and it hit me how scared he was, but how brave he acted. There I go again.
OK I will check out your site Eileen. Everyone have a great day. You too Jane. Hugs and Kisses Bonnie
Dr. Martin, I happened upon your posts today while I search for answers on knowing how to recognize the signs that death could be near. I know that sounds awful and morbid....
We have a family member who I believe is in end stage COPD. I say "believe" because during this long drawn out horrible disease, our loved one has never truely admitted to the diagnosis. Until this weekend.
Hospitalization happened about once a year, 6 or so years ago, now it has been several times this last year. Edema has been the biggest issue, controlling it without leaving the patient on lasix. Currently the patient's heart, kidney & liver scans look okay.
The patient's lung capacity is less than 10%, and is on maximum oxygen use at home without being hospitalized....
My question, Will we know that days or hours are remaining or can we lose our loved one at anytime? We would love to know what to expect. Kaye.
Dear Kaye,
Thank you for this courageous question.
First of all, I must tell you that I'm not a doctor. I'm just a respiratory therapist who has been at this for a while, somebody who has been at the bedside of lots of people with really bad lung disease.
Your search doesn't sound awful morbid at all. You're just seeking information that you have the right to have.
I would like to send my warmest and gentlest thoughts to you and your family and to your loved one who is so seriously ill. This is never easy -- no matter how expected and anticipated it might be.
You don't say so, but I'm wondering if your loved one has actually been diagnosed with COPD by a physician.
You say that the lung capacity is 10%. My friend, if your loved one has COPD I must say (me, the eternal optimist), that if the doctor has tested them and says that this is all that is left, that is extremely low. Very low. And to be blunt, yes, with that level of lung function remaining, you and your family should be prepared that you could lose your loved one at any time.
On the other hand, I am not God. I cannot predict the future. People can survive beyond extreme limitations, but again, 10% lung function is beyond what most people are able to survive.
I'm sorry I could not be of more help. Again, I thank you for your courage in asking this question. I wish for you peace now and in the days to come.
Jane.
Jane, Thank You so much for your involvement. i have been diagnosed 5 years ago with COPD, but the dr thought it was mild, i quit smoking...lungs felt better, medication worked better, but i a short time later got worse. i guess the copd advanced even though i quit. i did start smoking again about xmas, and have been ever since "with the idea in mind that i will quit tomorrow". i know how ridiculous that is, but i am trying to find a better way this time to do it (not sure that isn't just an excuse as to why i haven't), but anyways i go to pulmonary doctor soon and will find out how bad i am, probably severe at this stage but don't know what that means. I am trying to find answers or understand what can and should happen when you are at end stage so that i know that i am getting the best treatment possible. i am on symbicort, and just last week atrovent, and use albuterol sparringly because i have a cardiac sensitivity to prolonged use. i beleive pulmonary dr will tell me i need oxygen now. i have tried to quit so hard and this was my 4th time. depressing, but i will try again. the dr won't give me anything for depression, depression makes me smoke more, vicious cycle. he says antidepressants have norepinephrine and that will cause more shortness of breath, so maybe...he's right. don't know. must be something else but don't know that either. at any rate i wanted to say thank you for the insite you just gave to the lady that has the dying relative. you were honest and open about dying not being morbid...dying needs to be open and honest and filled with answered questions. sometimes less anxiety and fear are the only way to help a person, and always people can handle honesty easier then the fear of not answering real questions from people that have a right to hear the answer. we all have that right to be told the truth, and to allowed to make our own adjustments and life choices in time. you honesty was refreshing and truly a hope for people in these situations. i think that when a doctor won't answer your questions regarding dying it is because they have not been able to accept the fact that others can handle the truth about dying themselves, we don't need to have facts kept from us, if we are dying we deserve to know as much as possible about how to determine when and what we need to do. no one can make that determination for us, but for those that have the medical expertise to help us gage when it might happen, ie...six months, 6 years, 6 days it should be there responsibility to tell us. they also have the right to extend hope and not judge us. i was so sorry to hear bonnie (think her name is) talk about her physician withholding medications because she smoked. i sure want to make sure i don't go to him. how judgemental and how sad. i pray she finds another physician. thank you for your honest help and encouragement. sandy
Dear Sandra,
You're very welcome. I'm glad you find my writings helpful.
Yes, even though you quit smoking, COPD continues to advance but at a much slower rate than if you kept on smoking. In fact, it has been determined that quitting smoking is the number one disease-altering behavior for people with COPD. So, the person with COPD does have some control over their future! Just never stop trying to quit. Never quit quitting! 
As far as the stages of COPD go, I hope you read my series here on End Stage COPD. Many people have found it to be helpful.
Thank you for acknowledging my openness in talking about dying. Lots of folks are so afraid to talk about it, and that can make it so much more frightening and mysterious than it has to be. If you get the facts and find out what you're facing, that monster seems to become less vicious. He's somebody you now know and you can deal with him!
You are so right. Everybody has the right to be told the truth. I always tried to respect my patients and not insult them by keeping things from them and treating them like children. Even my patients with a very limited formal education - even those unable to read - I would tell them, "You're smart enough to understand this stuff!" And they were!
Every person has the right to die with dignity - on their own terms - not have somebody else decide for them. That's why writing down your wishes (I wrote an article about this too) is so very important.
Sandra, good luck with everything, your quitting and your upcoming visit the pulmonary doc. Stay in touch. You're not alone!
Jane.
http://www.breathingbetterlivingwell.com
Hello All,
I've been down for the passed few days feeling so bad I just couldn't stay up very long. I am wondering if I might have pnemonia(sp?). I keep waiting to feel better but haven't yet. I absolutely hate having to go to the doc but I might have to break down and do it. I don't have a fever but I feel so bad and I hurt a lot under my shoulder blades and down at the bottom of both my lungs. Wouldn't I have a fever if I had pnemonia? Just a bit of a productive cough but can't get it up enough to see the color.
Did have a happy moment yesterday. The transfers I ordered to embroider some kitchen towels came. I got two different ones, one is different kinds of birds, that is for my daughter, and the other is different flowers with a butterfly on them. I can hardly wait to get started on them.
I have read all of your postings and want to thank you so much for your encouragement and suggestions. It really is so wonderful to have people to talk to that don't make me feel guilty that I don't feel good.
Haven't been concerned about my flowers but I know I will when I get to feeling better. I have been thinking about getting a couple of dalihas and trying them out. I haven't ever grown them but have seen them from time to time and they are just beautiful.
My husband found an organization here in Springfield that will come out and help with yard work for free. I am not sure what their guidelines are to qualify for their help but all they can say is "no" right? Well, have to close for now. Just have to lay down.
Hugs to all.
Annemarie
Went to the doc yesterday. He gave me some antibiotics to take for five days. I have a lung infection along with my ears and sinus. Why did I wait so long to go??? Took the 2 pills right away and am feeling better this morning. Actually woke up to snow this morning. It was just a skiff but more than we had this winter. Am going to iron on the transfers for the kitchen towels today and get some sewing done on that quilt. It is great to feel like a human being again.
Hugs to all
Annemarie
My mom of 83 years died of COPD in Aug 2010. I was so scared she would gasp for breath and struggle. I was a very peaceful in the end.She was on oxygen to the highest, but with her medicine to keep her comfortable she slept very comfortable in the end. Please note the medication calmed her and took any pain she had away.....May God Bless you all who worry about this.....May the help you and your family facing this.....God Bless......
Dear Daughter Who Cared,
I'm so sorry that you lost your mother, but I'm glad that at least she had a peaceful, painless passing. I admire your courage and generosity in sharing your experience with us, and I'm sure it will help many people know that dying from COPD doesn't have to be so feared and frightening.
Thank you. God Bless you.
Jane.
http://www.breathingbetterlivingwell.com
My mother had both COPD and CHF. I was with her when she died. She was in a full panic and gasping for air. She felt as though someone had put a plastic bag over her head and was suffocating her. Health care professionals are not qualified to make any sort of judgment as to what it is like to die from some diseases if they have not experienced it themselves - none of us have, and none of us have lived to tell about it and none of us ever will.
By observation, by mother's experience was a horrible way to die although I have no idea whether she lost consciousness before the worst of it - and the staff at the hospital that she died in were some of the least compassionate I have ever encountered (and I am a hospice social worker). All that I do know is that a few minutes after she was pronounced dead, her face took on a look of tremendous peace.
As professionals, we have no right, knowledge or experience to tell people what it is "like" to die from any disease. I like to think that the mind takes over and puts us into a state where we do not experience pain and discomfort, but that is just personal opinion, speculation - and hope.
Dear Parthena,
First of all, please accept my condolences on your loss. I must say that also, I am so sorry that your mother had such suffering at the end. As I'm sure you know by the work you do, and from what you see by some of the other posts here, it doesn't have to be that way.
Hopefully by writing about it and sharing our experiences such as you just did, others will have the information they need to take charge and be able to pass peacefully on their own terms.
Thank you for your note,
My thoughts are with you,
Jane.
My mom passed away a month ago from COPD, she was 77 years old. My mom smoked for over 30 years but she quit 23 years ago and I was so proud of her. My mom made the most of everday and she was tough. I learned so much from her and a month ago she passed away and she fought till the end and I miss her so much but to know she is not suffering anymore does give me a sense of peace. I never smoked and I know my mom was so happy about that and she always told me that she was so proud of me for that. I always told my mom never to feel guilty about making the choice to smoke because we all know in 1945 when she started no one knew what we know now. I was proud of her that she listen to her doctors and quit that day!!! My mom will always be my hero!!!!!
Dear Danish Daughter,
Thank you for sharing your story. Please accept my sincere condolences on your loss. It's clear that you loved your mother very much and had a great deal of admiration for her!
You're so right about not knowing then, what we know now, about the dangers of cigarette smoking. Back then, soldiers were given free cigarettes, women were told to smoke in order to help them calm their nerves, and even in the early 80's nurses, respiratory therapists and cancer doctors took smoke breaks in the ICU staff lounge! Unbelievable but true, and you are keeping a good perspective on this.
You talk about being proud of your mother, but you too should be proud of the way you encouraged her and made the most of your precious time together. Again, I am so sorry for your loss. I'm glad you're finding peace and comfort and in memories of your mom.
My best,
Jane
http://www.breathingbetterlivingwell.com
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Thanks for this post, Jane. You handled it with sensitivity and hope for peace at a time in our lives that we look toward with fear.
Eileen
Thank you, Eileen. I'm glad it helped. We all could use a little less fear and lot more hope and peace, but especially in life with COPD. Jane.