Is chronic obstructive pulmonary disease often a misunderstood topic among your family members and peers? Share what you think they should know about your disease and how you go about explaining it to them. Share Your Story
Need for Increased Awareness
- It is difficult to make anyone believe something they can't see. I think now, finally after 3 years, my boyfriend of 17 years actually believes I may have a problem breathing. He still sometimes can be kind-of cruel expecting things of me that I can't do. If people could just take your word for it that it is hard to breathe, it would be better for me. The silent disease. They have to see you struggle up the steps or something has to happen when you have to lean on a cart to shop, to make them aware of the problem. Breathing comes naturally so it's hard to believe unless you have experienced this.
- —dveccia
Advice for People Who Don't Understand
- I am now on a daily dose of prednisone. I said I would not do that until it was time. Well it is time. Last 3 times in the hospital were not good. Last time I had to taken from our hospital to another one. They put me on a ventilator. If not for that I would not be here today. I have to use a wheelchair everywhere I go. I have lost muscle strength all through my body. Once I was also down to 93 pounds at one time. It has aged me something terrible. I try to walk when I can but I have osteoporosis so bad that I am afraid I may fall and break a hip. I have already broken my left hip and sure don't want to go through that again. Like my doctor says no one can really understand this illness unless they have it. So for those that don't understand I tell them to have someone put their head completely underwater and don't let you up until you are fighting and see how you feel when your head gets out of that water and how hard it is to catch your breath. No one has taken me up on that one yet
- —Guest Toria
I am Still the Same Person
- Sometimes just having someone standing real close to me gives me anxiety. When I ask them to please stand back they take offense of it. Since I have good days and bad days if they see me on a good day then they think I can do anything and I am all better. Thank goodness my husband understands. Or if they try and call me and hubby says she is sleeping they ask him is that all she does is sleep?
- —Guest Torialee
Cooperation
- 1. Friends: Must realize that when under serious attack, I become exhausted and need rest. If necessary, they may ring me. 2. Family: Because of coughing my family member has started avoiding my company, which is very sad.
- —Guest Anwer
Take All the Advice You Can Get
- COPD has nearly ended me but for my sake, I am moving on with each new day. It's so horrible and I've aged so so much. I feel so angry I got the disease. What else can I do but take all advice I get, I don't want to leave this world now.
- —Guest patricia gallagher
About 1 in 4 with COPD Never Smoked
- Some of us got COPD from secondhand smoke, some from work (fumes, dust, chemicals), some from genetic factors like Alpha-1-antitrypsin deficiency, and only some folks from smoking. Only SOME smokers get COPD. Research is ongoing to figure out WHY. In any case, please don't judge and blame the patient--it's very hurtful whether we are a never-smoker, former or current smoker. Also, many of us can still do quite a bit as long as we plan and pace ourselves.
- —Guest starion
Too Much Medication Can Be Bad For You
- I was told I had COPD in 2000 and was put on albuterol which really helped. In 2001 I went on Medicare and took all the test I had mild COPD.I changed my PCP as he moved to far away and the new PCP put me on Advair, Spiriva, Duoneb and albuterol + another inhaler of albuterol . My heartbeat was a constant 103 BPM. I asked if I needed all of this and the answer was "oh yes". I lost sight in my right eye after about 2 years on all the medicines and had developed atrial fibrillation from what the doctors tell me was due to being overdosed on albuterol. So I really believe when the doctors give you all the medicine you might want to get a second opinion. Since then, I have gone to 2 other pulmonary doctors and they wanted to put me on all the medicines that gave me trouble. It must be in the AMA guide lines. I am now on Advair and Albuterol rescue inhalers and am holding my own. No change since on these medications. But on the others I went down hill fast.
- —Guest Stan H
That We Are Scared and Depressed
- I don't know, actually. Just found out. Divorced. Kids almost grown. Not sure how to tell my kids, OMG. I feel so alone. No support. Not close to brother or relatives that are alive. Not not many friends. Crying. Just broke up with boyfriend. Not sure anyone will now want to be with me. A lot of guys like me however do i tell them? Also Dr. said e cigarettes are OK to smoke.
- —Guest suzzi
How Frightening It Is
- I was told I had 'mild' COPD just last Friday. My Doctor hasn't told me much, it's irreversible, the damage is already done and it's now a damage limitation exercise. I'm on a inhaler at the moment and have a really irritating cough. I'm told it's Chronic Bronchitis. I've read up on COPD myself online. Now I'm anxious and very scared. I'm 49 and I've never smoked but I have in my time done a lot of passive smoking and I was an underground worker in a coal mine for several years. I have an aunt and uncle that have it too and they just say take care of yourself, excercise as much as you can, continue with the medication and you'll be fine! I'm worried that I live alone, I have few friends. I have family but I don't ever want to be a burden on them or beholden to them, I don't want to lose my independence. I'm diabetic too and I know all of the risks with that disease and it has never worried me, I've never been scared of it. This is a real fear.
- —Guest Martyn
COPD is Sad
- Its so sad when you have COPD. My whole life has changed. I cannot even clean the house or do anything. If i walk to the mall it has to be slow. In 2008 the doctor said i have 59% of my lungs that do not function, now it's even worse. I also have asthma to top it off. Bless us all who have COPD.
- —Guest Smallsweet
Quit Smoking if You are a Smoker
- Barend, I totally understand your comments and concerns. Do you have a lung Specialist that you can see on a regular(two to three times a year)? He/she could probably answer many of your questions. It certainly is upsetting when you are first diagnosed but acceptance comes overtime and as you gain knowledge of your disease. Biggest priority initially is to quit smoking if you are a smoker as continuing to do so will only make things "much worse"! Be fit(exercise-I prefer aerobic exercise) and maintain a healthy BMI and you can improve your quality of life significantly! This has worked well for me!! Hang in there!!!!
- —Guest denis
Be Kind and Caring to Your Loved Ones
- I'm sad for my husband, he did smoke but welded in fab shop for 21yrs, went down-hill fast. Doctors suck, been to many, all say different stuff. One even said he had 3 months to 1yr to live? We've been thur so much in a short time at 49 yrs old. I'm supportive and loving and caring. Words makes the difference. Be kind and caring to your sick love ones. It's truly a death sentence and scary for anyone with COPD. One day at a time. Make memories and pamper your loved ones. Smells make him ill, I cook on the porch. Never spray any type of sprays perfumes etc. Be strong and positive for your loved ones. We never know?
- —Guest katie
Learning to deal with COPD
- I have COPD. Still learning how to deal with it . Co-workers are the worst for me to deal with.. I work in housekeeping . Some of the co-workers are just rude.. I get short of breath bad someday and just can not do as many rooms like I use to.. And I hear them say oh my God she is just pulling it (short of breath, just to get out cleaning the rooms,,, ) I try to get to them early enough in the day that I'm not feeling good,, about 2 hours I need to rest, because of some of the guests use way to much perfume,, nail polish and etc. ..The guests are great they ask if I am ok, and if I need help, I tell them I need to catch my breath.. you have COPD," Yes" Let me call the front desk and get someone up here to make sure you are ok.. The guest are great. Co-wokers - well not all of them
- —Guest Joyce
Just Go For It
- I live in France. I came here alone when my husband died i have COPD. I made loads of friends by talking to people.I am never in. I have 15 hrs per day/night on oxygen.I have a log fire because I can't afford central heating. France has the best health service in the world. I go out most nights even when I feel ill for a laugh and a drink. I am 71 years old. My friends took me bowling! I have been in a play and I have fell over drunk twice. I live a very tough life in the country. We have floods hurricanes, power breakdowns and snakes. Don't be scared of life. Enjoy every minute and don't spoil yourself too much.
- —Guest carolinkar
It's Scary
- It's so scary when you cannot breathe and are gasping for air. I have been smoking for also 40 years...
- —Guest Maggie
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