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Learning the new *normal* and how to tell if I am going downhill

Hi there
I'm a 48 year old lady from UK have mild emphesema and mild Bronchieastatis along with alpha 1.

The route to me having a CT scan was at least three years of heavy chest , not so much sob (unl we exertion) but this heavy feeling/light burning

Initially I was evaluated by cardiology until last year my GP referred me to a respiratory doc who ordered the CT scan which revealed the lung issues and was then tested for alpha.

The thing is....I don't know what is normal. Is this heavy chest feeling/ light burning feeling, "normal" for this conditions? The respiratory doc has me scheduled in for six monthly reviews and I've got two inhalers

She wouldn't perform Spiro tests as I'd had that done two years before so for completeness I paid to that done privately and there's no obstruction they say.

I guess what I'm asking is, is the heavy chest and burning feeling normal when having the above conditions....I don't want to keep seeking medical help if this symptoms is something I need to learn to live with
I'm not sure how I would know if I'm going downhill? I'm sorry for the daft questions.

All the best xx

  1. Hi . There are no daft (I love that word!) questions here. So, no worries! Chest tightness or pain is a common symptoms of both emphesema and bronchieastatis, but that doesn't mean you have to live with it. Here is an article with advice from some of our health leaders for pain relief that might interest you: Unfortunately, doctors often fail to address the pain associated with COPD, so you might have to advocate for yourself to get the treatment you need and deserve. Burning is not a symptom that is normally associated with either disease, but we are not medical experts. Has your doctor said what might be causing it?
    It can be hard to know when or whether you are progressing. Sometimes, you might simply have a flare caused my an infection, something you inhaled, the weather, lots of different factors. Here is an article about slowing the progression of COPD that you might find helpful: Have you found out what caused your emphesema and bronchieastatis? Please know we are here for you whenever you need us. Warmly, Lori (Team Member)

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