My mum has emphysema and 'either bronchiecstasis or fibrosis' (each hospital letter says something different!) Still no firm diagnosis - it's all about there being 'evidence of' or 'possibly either / or', so it's all very confusing!
When she is sitting, sleeping, showering, ironing etc, she is absolutely fine - a little breathless towards the end, but nothing major, however, as soon as she starts walking, she gets a severe discomfort / spasm at the top of her abdomen which makes her very breathless. It eases after about a minute, then she carries on for a further few steps, then has to stop again, She has inhalers etc which make no difference and is on 3lpm of oxygen for 15 hours per day which doesn't help either. She doesn't display any of the other classic symptoms of her diagnosis like excessive mucus (even after having her AM inhaler that helps you to cough it up), she doesn't cough, doesn't have disturbed sleep, isn't in any pain in her chest or back etc etc ....
I did book an appointment for my mum yesterday with our GP and she did do an abdominal examination and there was an area just under my mum's ribcage towards the left that was very tender to be touched, so she has been referred to the hospital to have the camera inserted to have a look if there's anything going on in addition to her diagnosis.
I'm convinced that although I don't dispute for one minute, she has what she's been diagnosed with in a 'mild' way, which is what the notes say, however, I do think the tummy discomfort / tenderness is actually due to something else causing the breathlessness. I've read about 'hiatus hernia's', diaphragm spasms etc etc and they can all be a cause of breathlessness, but due to there not being enough research on them being connected, they are rarely associated with each other.
My brother and sister in law are both in the medical profession (brother is a paramedic and sister in law is a Macmillan nurse) and when I mentioned my doubts to them, they both laughed and said 'what the hell has a hernia got to do with breathlessness?", then a couple of hours later, my sister in law messaged me (they live in Australia) and said she had just been looking through her university library and has found several studies by groups of doctors relating to respiratory problems and indeed, hiatus hernias, diaphragm issues etc can be a cause for breathing problems.
Do any of you suffer with a discomfort in your upper abdomen upon exertion or just your upper chest? Has it been found to be just another symptom of your diagnosis or something else?
I know i'm maybe clutching at straws, but I will do anything I possibly can to try and research further these awful respiratory diseases.
Love to all