How long have you lived with COPD?

Posted by puddy68 @puddy68, Sep 30, 2024

Hi there - I'm so sorry, this is my second post in 2 days. I think I mentioned in my previous post that I was FEV1 50%. I think I also mentioned [and if I didn't, it would be pretty obvious] that I suffer from severe anxiety and depression. Have managed to push a psych appointment to tomorrow - this COPD has really thrown me. I'm absolutely convinced I only have a few years left to live, no matter what I read [and I'm now staying away from google]. I realised I needed help when I wasn't believing what I'm reading, and I'm driving my family crazy. I have just one question - would people be willing to share with me how long they have had COPD for? I'm sorry for repeating myself........I'm just reaching out for as much help as I can. God Bless.

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@stino1954

I was diagnosed with COPD in 2004. I, too, was thrown for a loop when I got my results. I'd been more short of breath and on a hot summer day, I had my neighbor lady take me to the ER. They did the routine bloodwork, chest X-ray, EKG, and a breathing treatment. After the results came back, they informed me of my COPD and emphysema. I was four months short of my 50th birthday. I thought, "why do I have COPD" when I'm not even 50. I smoked for over 33 years. Besides that, I have Alpha 1 deficiency, also known as antitrypsin deficiency. That and the smoking was most likely the cause of my lung issues. I did well with my breathing and shortness of breath for about 10 years. Then I planned my daughter's wedding, and I was under a lot of stress. So I began having more exacerbations into the fall and winter. I had turned 60 in October, and I was eligible to retire from my current job and so that is what I did. I was sick so much of the time throughout that fall and winter, I felt that it was best. I worked in a mental health facility, and I was always around the patients and the care workers, so it would be difficult to avoid any strains of illness. I managed my COPD once I retired, and did quite well, having to use oxygen at night, getting a portable oxygen unit to use during activities or traveling, and the non invasive in home ventilator that I wore at night with my oxygen. So in 2024, another ten years later, I was quite ill throughout the last part of fall and into the winter. As our winter was horribly cold, and there was much sickness, I ended up in the hospital for 3 days with pneumonia. It really hit me. After returning home, I was very weak, fatigued, had lost over 10 pounds. I qualified for in home health care with nursing, OT and PT. Thank God, my nursing staff was a Godsend, and the therapists, as well, helped keep me going. However, my lungs wouldn't heal. I still had the congestion and wasn't able to expel it. I was on steroids, and I was on antibiotics, different cough syrups. I also was diagnosed with sepsis in the hospital, and I was having bouts of diarrhea. I thought I was going to die. So I was in hospital from 12/2 to 12/4 and then discharged. I would get better and then I'd get a setback. I couldn't get rid of the congestion. I went to my pulmonologist and said that I needed to not be on the antibiotics anymore, as I'd become immune to them. She had me on a prednisone regimen for 10 days. Long story short, with the help of the incentive spirometer, and my acapella (breathing device) I finally was able to get rid of the nasty phlegm and get my energy back. I was released from home health care in March. What a long winter it was. Now, half way through April, I feel almost back to normal. I mean normal to the way I've coped with the COPD over the past 20 years. I'm so grateful to be able to do what I can do. I can't do a lot of housework, pushing a vacuum, using my arms to scrub and clean my shower/bath. But I can cook with breaks, run the dishwasher. And I consider myself lucky to have a husband who helps, and four wonderful sisters who help with my housework. After coming home from hospital, I was so weak to take a shower, and once I did, I had to wear my 02 and use my shower chair. I felt so helpless. My sisters washed my hair for me a couple of times. Just this past week, I was able to take a shower without my chair, with no oxygen in the shower, and wash and condition my hair. What a great feeling it was. Do all you can do, and if you can't do it, keep trying. If you need help, ask for it. Think positive thoughts, and do what you love doing and be around supportive family and friends who you love. The best to you. I just turned 70 on October 10, and I was so depressed before that birthday, I didn't even get together my family, except my daughter, husband and son-in-law. Now that I'm feeling healthier, I am so happy to spend time with all my friends and family and grateful to be alive. Keep the faith & God bless you!! We're all in this together. Say prayers and they will be answered. Happy Easter!!

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Thank you.

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@hicopd

“Flare ups” is an easy way to refer to having breathing issues out of control and easily understood by most folks. This way there is no “spell mis-correct,” which I am frequently subject to!

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“Flare ups” works for me . I don’t worry much about spelling anymore . Close “enuf” is readable. Bless all of you here . Crystalina. 🐈‍⬛

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@kndaustin71

exasperations = exacerbations
Alot of how one responds to the challenges that present with COPD is your support system. My husband passed 5 years ago and I'm basically feel like the Lone Ranger. That effects your whole outlook. I have to take xanax before getting in the shower....scares me to death, but of course you always feel better after your hairs been washed and clean nite wear. I have always been so independent and HATE to ask for help......may just spend the inheritance $$ on self care needs!

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When I had occupational therapy, the therapist suggested I wash my hair when sitting on my shower chair. Instead of raising my arms to my head, she said it's easier if I bend my head down and rest my elbows on my knees and wash my hair that way. It truly did help when I wasn't able to wash it otherwise. Good luck. You're never alone. We have our guardian angels. < 3 God Bless.

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Please do not despair. I was diagnosed with COPD from MAI (also have pulmonary hypertension), in 2010 and I am not on oxygen and my last pulmonary function study showed improvement even after having RSD followed by pneumonia a few months ago. I make sure I drink st least 4 cups of water in AM to loosen secretions, take Mucinex religiously, do chest clapping, postural drainage, walk at least 1.5 miles /day briskly and eat lots of nutritious foods including salmon and others containing high protein content. I use nebulizer with 7% saline and sleep as flat as possible to allow for some drainage. I also work out in the gym and avoid sitting for long periods of time as the lungs do not fully expand while sitting. It is rigorous but with the right mental attitude and faith, is doable and effective. Keep up the fight and do not allow yourself to get discouraged. GIF bless!

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Hello my handsome has had COPD for 6 years, we are at stage 5 End stage I don’t know what to expect for him, he walks 30 feet , needs help with everyday activities. I feel I need to stay home with him but he says go to work I will be ok , but I can’t leave him. Does anyone have help.

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Even with my oxygen on ,4 ltrs, When I change clothes at night, my oxygen drops to 83. I walk about a dozen steps then undress ,redress for bed . I am level 4 . None told me about a level 5. My husband does help me with showering and with my cooking , I am very lucky to have paid help with house cleaning . Still family members say , “ she doesn’t look sick”. It’s a hard disease to fathom and harder to live with . Blessed Be all of you , Crystalina

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@crystalena

Even with my oxygen on ,4 ltrs, When I change clothes at night, my oxygen drops to 83. I walk about a dozen steps then undress ,redress for bed . I am level 4 . None told me about a level 5. My husband does help me with showering and with my cooking , I am very lucky to have paid help with house cleaning . Still family members say , “ she doesn’t look sick”. It’s a hard disease to fathom and harder to live with . Blessed Be all of you , Crystalina

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I have had COPD for about 25 years, SP2 is still about 95-97, not on oxygen, I don't do as much as I used to, but I still stay somewhat active. I have no idea what stage I am in and couldn't care less, just something less to worry about, today is my 87th birthday and plan to be here or my 90th

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@ray420

I have had COPD for about 25 years, SP2 is still about 95-97, not on oxygen, I don't do as much as I used to, but I still stay somewhat active. I have no idea what stage I am in and couldn't care less, just something less to worry about, today is my 87th birthday and plan to be here or my 90th

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I am happy to hear that you are doing well. Many of us are not so fortunate. It makes us more concerned about phlegm obstructing our breathing , etc.. Sometimes just talking about the procedures, treatments, and our methods of dealing with it helps us . So be prepared for a wide variety of information from all of us here. We all wish you the best. Hugs, from Crystalina.

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I was first told I had COPD about 12 years age. It was very mild and I only did albruterol a few times a week.

That all ended in Feb 24. I fell unconscious at Walmart and was in the hospital for a week. They tested everything from epilepsy, stroke, and heart and a few others. All came back negative. I was told to go to a neruologist. That doctor also tested and all came back negative. My breathing became much worse, I was wheezing and coughing a lot and seems never to be able to catch my breath. Went to my pulmonologist and said I was full of mucus and a few other nasty things. I went on 3 inhalers and did oxygen for a year and it got better. In March I got bad again. A lot of mucus and now pretty much chronic cough. Very hard to get the mucus out. I have my appointment soon to see the pulmonologist.

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@peter51f

I was first told I had COPD about 12 years age. It was very mild and I only did albruterol a few times a week.

That all ended in Feb 24. I fell unconscious at Walmart and was in the hospital for a week. They tested everything from epilepsy, stroke, and heart and a few others. All came back negative. I was told to go to a neruologist. That doctor also tested and all came back negative. My breathing became much worse, I was wheezing and coughing a lot and seems never to be able to catch my breath. Went to my pulmonologist and said I was full of mucus and a few other nasty things. I went on 3 inhalers and did oxygen for a year and it got better. In March I got bad again. A lot of mucus and now pretty much chronic cough. Very hard to get the mucus out. I have my appointment soon to see the pulmonologist.

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I take equate Musinex 1200 twice a day . It works on stubborn phlegm . I also see that I drink water aggressively every day. I think a lot of folks with copd do. I see some take the level 600’s. I just wanted to get the best help I could so I started with 1200’s. You might try Musinex . Sending peace and healing . Crystalina

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