From the article: Living With COPD
For some, the most frightening aspect of COPD is death. But, many things along the way can be just as, or even more, troubling. Here is your chance to share, what you believe, to be the most frightening aspect of COPD. Sharing with others will help you nip that fear right in the bud where it belongs. Share Your Experience
COPD Itself
- Wanda, I'm almost at the same point as you now. Iwas diagnosed 7 years ago and am 66. I have been able to stay out of the hospital for over a year but doing pulmonary rehab and wirking with my Doctor on drug theray. My concern now is that I am at 4 on the BODE scale (very severe COPD), I am able to do very little Most daily tasks are extremely difficult. most debilatating sympton is restricted airways. Sometimes they are so tight and restricted. I produce a lot of mucous and it makes breathing difficult. I'm concerned about the ongoing use of prednisone (20mg) day as I cana not reduce it without almost becoming immobile. Grocery shopping is my last normal task and it is becomming very difficult every time. I'm worried about what will actually happen at the very end. Will I just sit and struggle and slowly choke to death? It's frightening as no one talks about it (guess they can't).
- —FredRea
Fears
- I'm 62 and I've had severe COPD for around 10 years now. As much as I fear dying from this I've learned to focus on each day, hour, minute or moment as necessary to gain some control over this. I've lost a lot of weight because I didn't have an appetite. I lost muscle mass which only aggravated my COPD flare ups. I've decided enough of this!! I'm now eating more and better than when I was 20. I'm forcing myself to do some exercise each day to rebuild my muscle mass. I make an effort to keep in contact with people and get out and about and get involved to improve my mental health. I'm tired of worrying about the what ifs of this disease. I want to make the best out of this situation and pray for my family and friends while I'm at it. While we are dwelling on our COPD they may die from something a lot less predictable at any time. At least we should know better to enjoy the time we have left! I refuse to die a death of a thousand cuts with negative thinking for the time I have left.
- —DogsFrogs
Fear of Letting Go
- The most frightening for me is being unable to take care of myself. I've been married to a wonderful man for eight years. I told him of the disease before we started dating, but when you are "young" and in love, nothing matters. Every year I do less and less. I live with guilt. He now does the laundry because it's downstairs. When I'm sick with a cold I can barely take care of my own personal hygine. I will not have my husband doing for me. It's not fair to him. He retires this year. I want him to enjoy his life. Sounds like I could use some Cymbalta!
- —sweetjeanie
No Compassion
- I smoked for 40 years. Everyone did. They even smoked on TV then. Now, I am 59 and no longer smoke. I'm dying of COPD and getting no compassion at all. It's all my fault because I smoked. Well, too freaking bad. No one told me until many years later that smoking would ruin my lungs. Now I am 59 and on oxygen 24-7. I can't breathe, even with it. I have no life and hate the nose tubes so I don't go out. My family don't seem to care how close to dying I am. I really don't care either. I want to die. This COPD crap is sooo not me. Sometimes, I think it would be easier to just die and get this over with; this disease has left me isolated and alone. The only comfort I get is listening to music. Rock on........
- —maryb59
Air hunger
- The most frightening aspect to me is the air hunger.
- —maryb59
Http:/about.com.copd
- My sweet husband, age 64, died 2 months ago from COPD. I see his and my experience in many of the posts, and my heart aches for you. I wish there was more research as this is a leading cause of death world-wide. Perhaps stem cells? Why are you so passive? Take a page from AIDS activists:ACT UP! COPD is a major killer but no one knows anything about it. All the drug company commercials make it sound like mild asthma. When he died I filled up a large zip bag with his pills for proper disposal. Thousands of pills. He tried to live and we tried with him. But I keep coming back to the fact that this is such a hidden disease when it should be front and center. Peace to you all.
- —angela.lewis
Afraid of Going to Bed
- Vietnam helicopter pilot. Shot down four times and never gave it a thought about dying. Now, I have COPD and scared I won't wake up.
- —Guest BILL FORNES
That I Won't Be Able to Get Out of Bed
- I quit smoking in 2004. My COPD wasn't that bad. I am not on oxygen, my O2 level is fine. My lung function is very low, I have severe COPD. I have been very active all my life, but now it's hard for me to do anything. I told my primary care doctor that I prayed to die. She put me on antidepressants. I still dread getting out of bed. As long as I lie down I am fine; it's when I am up & moving. My pulmonary doctor has put me on a nebulizer 4 times a day, it helps for a couple of hours. I too, get my inhalers from Canada; $59.00 plus tax compared to $275.00 which is terrible here in the states. I asked my doctor about lung volume surgery & he said there's a 10% death rate. Do you call this living? My fear is that there will come a day I can no longer get out of bed, that's when I want to die.
- —Guest jean
Leaving My Family
- I have had COPD for about 5 years. My mum mum passed with it. I am on oxygen 15 hours a day, most of which is during the night. I've had 2 really bad attacks where I nearly lost my life twice in 18 months. The most frightening thing is leaving my 4 grandsons, sisters, brothers and my 3 lovely grown-up kids. They say l can have a lung reduction, but got to get lungs in better shape. Good luck every one. I hope we all live a long time. Yours, Mitten.
- —Guest mags
Unable to Catch Breath & Panic Attacks
- My breathing problems started about the time I started putting on weight from eating crap food. Smoked for over 25 years. Use Advair and Serevent but doesn't really change much. Climbing stairs seems the worst for me. Or walking fast while talking. Very scary to not be able to catch your breath. Some people take breathing for granted. Oh, and I now suffer panic states at times.
- —Guest snowbird
Being 53 and on Oxygen
- Doc just told me i have COPD. I'm 53 and have to be on oxygen 24/7. I wish I had listened to my kids when they used to tell me to stop smoking.
- —Guest myra
Afraid of Dying With COPD
- I am afraid of dying with this. I watched my dad pass away with this. They said I was in the early stages, but I still have a hard time catching my breath a lot.
- —edgall
I Worry Most About the Future
- I was diagnosed with mild COPD last year based on complete lung function tests. I also have emphysema changes showing on my chest CT. I do not have breathlessness and can pretty much do what I have always done but what about the future? I know it's a progrssive disease but how fast will it progrsss. My grandmother died of it and my aunt has it also. Well, I quit smoking and will hope for the best. Good luck to all of you out there!
- —Guest Jim
Scary Moments.
- I have suffered from COPD for a few years now and of course it gets worse as time passes. I'm 73 now, and I ran a few pubs before retiring which were always filled with tobacco smoke, hence my disease. I try to lead a normal life, but I tend to over-do things resulting in gasping for breathe and an indescribable feeling of panic, fear and near passing out. I can't bear anybody near me or speaking to me when it happens, I know what to expect when it starts but it still scares the hell out of me every time! A nurse once told me not to panic, but that's like telling someone not to sneeze! But I don't let it stop me from doing things I've always done, I just do them slower and take more breaks. I'm not scared of dying and I'm always planning ahead and I think that helps. Try to keep occupied and don't think about dying, it happens to everyone eventually!
- —Guest John Darling
Scared for My Dear Friend
- I have a very dear friend who as just been told he has COPD. It hurts to see him struggle to breath sometimes and I am so scared for him. He tries to cope and make light of things but I know he struggles with the situation and the uncertainty of when the next bad turn is coming. I only wish it wasn't such an unpredictable illness. I can only be there for support and will be although seeing him struggle for breath makes me scared as i feel so useless.
- —Guest Lyn 65
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