Stage 4 emphysema
I’m short of breath just lying still . I’ve tried everything and am currently in a rehab facility. Getting nebulizer treatments with only a little relief but with side effects. My O2 levels are usually ok yet I can barely breathe. Tried pulmonary therapy , have been on bronchodilators for a few years, etc. I can only take about 2 steps to get out of bed to use a commode! Have a lot of other health uses as well but my heart is ok. Any exertion makes my breathing even worse. They’ll send me home soon but I have no help and am trying to juggle with Medicare for any help. But I don’t think there is any. No faith in my doctor either . And this is a new one! ANY advice on any new treatments for my condition would be great! Not a candidate for valve implants or lung transplants. Thank you!
My Mother and Grandfather passed from emphysema. And I too am on the same journey . Having been a caregiver and now just being able to take care off myself at stage 3/4 I can only just say I am with you. I look for and try to sustain the moments in life that bring me peace and joy and try to remember them when I am having a grueling day or week. I amaze myself often as to what I am able to endure and walk through in spite of only being able to breathe just enough to keep me on earth. And it’s a real bummer when I have other ailments that compete with the symptoms I already have from COPD. Yet I still manage. And it’s still worth participating as much as I can. But I understand what a drag it is to walk this road especially for such a long time.Yet I am still amazed.
Thank you so much for your response and validation. Each breath is a struggle and this is not living. I am just staying alive because I haven’t died yet! I wish you peace and pray for your comfort in whatever form that takes.
Hi
I hear how difficult things have been and how frustrating it is when you don't have faith in your doctor. Here are some articles that I think might be helpful to you: https://copd.net/treatment, https://copd.net/treatment/medication-overview, https://copd.net/treatment/medication-overview/oxygen-therapy. All the best, Sam S. (COPD team). Hi Sam, thanks for your response. I’ve done pulmonary rehab for 3 months this year and my breathing got worse. Any exertion makes it worse. And because my vitals and oxygen levels are usually normal my symptoms are ignored or dismissed. In rehab now after being discharged from the hospital with pneumonia and on nebulizer treatments and oxygen . Lots of side effects and minimal relief. Stage 4 emphysema. What do I do??
I'm sorry to hear pulmonary rehab was not helpful to you. As you may know, we cannot offer medical advice here (for your safety!). I hear how frustrating it is that your symptoms are not being taken seriously. Do you know if there is another doctor who may be more willing to listen to you that could give you a second opinion? In the meantime here are a few articles on the different types of treatment options available for those with COPD as well as an article with tips on advocating for yourself at the doctor: https://copd.net/treatment, https://copd.net/living/discuss-self-advocacy, https://copd.net/living/self-advocacy, https://copd.net/clinical/targeted-lung-denervation. All the best, Sam S. (COPD team).
