How long have you lived with COPD?
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
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. 😍
The also have valves they can put into your lungs, that elevates the copd I hear they work well.
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!
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.
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!
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?
I'm so sorry you've had such a bad time, rdrover. My thoughts and prayers go out to you. x
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!
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.