How long have you lived with COPD?

Posted by puddy68 @puddy68, Sep 30 11:59pm

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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Hi,
I was diagnosed 25 years ago. I'm 66 now. I did everything I wanted up until the last couple of years. If you're feeling good, take your meds and keep going. I'm sorry you have this disease, but it can progress slowly and give you time to have years of fun. Hugs and Love

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Hi,
I was diagnosed 25 years ago. I'm 66 now. I did everything I wanted up until the last couple of years. If you're feeling good, take your meds and keep going. I'm sorry you have this disease, but it can progress slowly and give you time to have years of fun. Hugs and Love
I too suffer from anxiety and depression. They have great meds out there now. 😍

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@parpro2

I was diagnosed with Copd about 25 years ago. It never presented any big problems other than I couldnt go hiking or biking for long periods-but i was never very athletic so i was fine with that. However it has really progressed only the last 2 years or so. Im now 83 1/2. That may seem old but i was always pretty active- traveling a lot, running a small business, participating in many activities & organizations. I sometimes (often) feel sorry for myself & can relate to the ‘pity party’ syndrome. I am now on oxygen. Started first only at night, now more often. I think that’s what gets to me. Being tethered to a machine a lot of the time. Definitely limits my social life. I live alone so my social life was always pretty important to me. I use a portable sometimes but it’s cumbersome and ugly. And i feel very conspicuous with it.
And when i am rational i know im blessed that its not worse. I really have no pain. Just shortness of breath.
In answer to puddy—yes you can live AT LEAST another 20 years. And live well- traveling , enjoying your family,
In all truthfulness i have had a very full & enjoyable life despite the copd. With exercise & meds & love of family & friends, you will enjoy a good quality of life for many years. And with all the medical advances, who knows- maybe theyll find a way to slow the progression or alleviate some symptoms. Probably not in my lifetime but definitely in yours!!

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The also have valves they can put into your lungs, that elevates the copd I hear they work well.

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It's a hard and scary diagnosis. I have Stage 4 with bronchitis over-lay. With that said it is also an exciting time for treatment options for COPD. I had Zephyr valves places to help my O2 sats to remain in the upper 90's, very successful procedure. Duxipent is a new drug from Sanofi that helps with the secretions and bronchitis component and Verona Pharm has just had a new drug approved by the FDA as well for treatment (not cures, but palliative to allow patients to maintain a good quality of life.) The best thing to do, in my opinion is read and research all that you can and pose questions to your physician, keep active - join a gym and get a trainer if you are able for strength training and maintain a healthy weight. In order to do all this you will need to address the anxiety and depression, which is completely normal for COPD patients to have. Yes, and allow yourself pitty-pat parties. That's normal too!

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@curley3

The also have valves they can put into your lungs, that elevates the copd I hear they work well.

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Have had three valves place in my left lower lobe> Made a world of difference. Resting O2 pulse oximeter sats get as high as 97-98. Do the research for the best possible place to have them done. There are criteria and testing that one must do, but you want a pulmonologist that has lots of experience and is at a quality hospital with good nursing care.

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@parpro2

I was diagnosed with Copd about 25 years ago. It never presented any big problems other than I couldnt go hiking or biking for long periods-but i was never very athletic so i was fine with that. However it has really progressed only the last 2 years or so. Im now 83 1/2. That may seem old but i was always pretty active- traveling a lot, running a small business, participating in many activities & organizations. I sometimes (often) feel sorry for myself & can relate to the ‘pity party’ syndrome. I am now on oxygen. Started first only at night, now more often. I think that’s what gets to me. Being tethered to a machine a lot of the time. Definitely limits my social life. I live alone so my social life was always pretty important to me. I use a portable sometimes but it’s cumbersome and ugly. And i feel very conspicuous with it.
And when i am rational i know im blessed that its not worse. I really have no pain. Just shortness of breath.
In answer to puddy—yes you can live AT LEAST another 20 years. And live well- traveling , enjoying your family,
In all truthfulness i have had a very full & enjoyable life despite the copd. With exercise & meds & love of family & friends, you will enjoy a good quality of life for many years. And with all the medical advances, who knows- maybe theyll find a way to slow the progression or alleviate some symptoms. Probably not in my lifetime but definitely in yours!!

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Parpro, it has been 20 years for me, and I was still able to travel to Germany and England with my daughter earlier this year. We walked quite a distance every day, but took breaks to sit down whenever needed. I think you just have to adjust as you go, which it sounds like you are doing. I can no longer hike up steep hills or run through airports, but there is SO much I can still do. If I'm being honest, my back pain is causing more problems than the COPD! Cést la vie!

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I had a lung function test done in 2023 and was told I had COPD. I went to a new doctor in 2024 and had a lung function test and did perfect and was told I do not not have COPD. I asked if this mean that I had gotten better and the Dr. said no you don't get better with COPD and he said I was misdiagnosed. Any thought's on this?

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@rdrover

Hello, My name is Rebecca and I am 52 years old. I have been dealing with COPD for the last 12 years. Between my COPD and my discs in my back deteriorating from degenerate deteriorating disc disease, I can only walk a very short distance and can't stand for very long, hence the reason I am in a electric wheelchair. August 28th 2021, My COPD flared up and my oxygen dropped, by the time my neighbor came over and found me struggling to breath, she called 911. By the time the ambulance got to me and checked my vitals my oxygen was down to 15% I remember them putting me in the ambulance and I remember them pulling away from in front of my apartment but I don't remember hitting the back going around the complex to leave I don't remember the trip to the hospital I don't remember being taken into the hospital I don't remember anything until I was laying on the bed I opened my eyes and I was staring at the light above the bed and I heard my neighbor's voice say I've contacted your mom your son and your daughter and your mom is on her way. That was the last thing I remember next thing I remember was waking up staring at a light above me and hearing my mom's voice say oh my God you're awake and I don't remember anything after that, then again I open my eyes and was looking at a light turned my head and seen both of my sons standing there. Now I'm really confused, I had to ask myself, am I alive or am I dead.... because my oldest son passed away in 2018 from cystic fibrosis. Everything around me sounded like I was in a tunnel and I remember Garrett coming to my bedside holding my hand and tell me how much he loved me how much she was worried and then he was going down to be with the kids so that my daughter-in-law could come up and see me but she said I opened my eyes when she came in and I looked at her and then closed my eyes I don't remember anything next time I opened my eyes to the light in the ceiling turn my head and my mom said oh my God your awake are you going to stay awake this time. I shook my head yes and she asked me do you know what's going on I shook my head no I was having a hard time talking. Mom told me that I had been on life support for 2 and 1/2 Weeks, and if I didn't come too within the next two days they were putting a trach in so thank the Lord I came too before they put a trach in. She also informed me that while I was on life support I had dialysis because my kidneys failed completely. And after fully waking them taking the life support off and starting recovery I could not talk no louder than a very soft whisper but felt like I was yelling. It was like I lost all control of my body from my neck down I couldn't lift my hands my arms I couldn't lift my legs and every day I had to work with physical therapy to get all the strength back in my legs my arms I had to work on feeding myself again getting up to even stand alone walk. The doctors there really thought that I wasn't going to make it and I did so bless the Lord for that one, I wear oxygen at night to bed. Like I said I am in a wheelchair. Honestly I quit smoking cigarettes/nicotine vapes on August 28th that was the last cigarette that morning because that afternoon is when she called 911 and I almost died. I started eating edibles but it just wasn't the same I used THC for pain management in my back because I refuse to take narcotics. But the edibles had to come to a stop because with edibles you eat too much and you're way too high and you're superified and I didn't like that so I started buying the THC pen and I smoke them then I started smoking real weed once in a while because the pens are nothing like real marijuana. I will not go back to smoking nicotine. I suffer with other health issues not just the COPD and the degenerate deteriorating disc disease I also suffer with type 2 diabetes, an umbilical hernia, lymphedema and cellulitis in my legs, Roscea, and I go to a foot doctor because my nails grow into my skin. I have many mental health issues too. to name a few, I have bipolar 2 with suicidal tendencies, bipolar-depression, anxiety, paranoia borderline personality disorder, etc, etc.

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I'm so sorry you've had such a bad time, rdrover. My thoughts and prayers go out to you. x

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Was formally diagnosed with Emphysema in my early 50’s but had had breathing issues for at least 10 prior. I’m now 76. Was put on supplemental oxygen for nights at 55 and 24/7 two years later. Was experiencing a major exacerbation every 12 to 18 months resulting in hospitalization due to a respiratory infection. Up until 2017 I worked full time then retired.
I could go out for an evening with family and attend holiday functions until 2020. Got a severe respiratory infection (not Covid) that wouldn’t clear that rapidly got worse from Oct 2019 through Jan 2020 and haven’t been fully recovered since then. Have to use a wheelchair if my plans involve walking more than a few yards, even with a portable oxygen machine. Was diagnosed with an autoimmune disease in 2021 so respiratory infections are now at every other month. It’s a long exhausting journey in the final years but I lived over 25 years with a successful career and loving times with family and friends continue!

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I have emphysema from no known cause. I was diagnosed in 2000 at age 42. I am still busy, traveling 30,000 miles by air most years and my moderate to severe emphysema hasn’t progressed much, other than the amount of lung function we all lose every year as we age.
I’d say if you work closely with your medical team, exercise and stay active, you can still live a full and pretty active life. You may have to make a few modifications along the way, but that happens in life anyway. My lung function has been about 30% of predicted for most of the past 24 years, except when I’m having a flare up and who knows how low it goes then.

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