Hello all, have lived with lung problems all my life. I have emphysema and bronchiectasis (the COPD caused by Alpha 1 Antitrypsin Deficiency). I turned 40 last year and had a hospital stay and have not felt my best fir a while so currently feeling a bit sorry for myself that I have never known what it’s like to be “normal”. Starting pulmonary rehab next week and had my assessment today. CT Scan scheduled next month too, having not had one since 2014. So this is all positive.
Would love to hear from you and thanks for the support.
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Nibbles77
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Welcome Nibbles! There have been many positive accounts of being on a pulmonary rehab course from members. Quite apart from the information and learning how exercise can really help our dodgy lungs it is really good to meet other people who have similar problems. Let us know how you get on and good luck with the CT scan.
Pulmonary Rehab is fab it teaches us to do more for ourselves & shows how it can be achieved over the course i have COPD which is family linked also. i hope this year will be better health wise for you XC
Hi Nibbles and a very warm welcome from another who has never known what it's like to be normal - just my normal. You have a lot to deal with and you are definitely entitiled to feel sorry for yourself sometimes - we all do at some time or another. The important thing is that you bounce back, and as you have had it for so long then I know you are well used to doing that.
Hope you feel in a better space with your health issues and life soon.
Hello Nibbles77 like your name makes me think of Christmas. Wishing you well. You are amongst like minded people here so you will get all the support you need ✋️😊
I was recently diagnosed with bronchiectasis. I have had a constant cough since July. I know that it’s something that goes along with this lung disease. My life has changed so much now......the cough is wearing me down big time. If I’m sitting still, I don’t cough as much, but once I start moving, I cough a lot. I can’t spend any time on the phone or carry on a conversation with anyone, because I start coughing. Have to avoid cold of any kind. Help!!!
Sorry to hear you've been diagnosed with this dreadful illness too.
I understand how painful your cough must be but with you moving around this will probably be helping to move the mucus in your lungs, you should try as hard as possible to cough and clear that gunk from your lungs which will cause more infection.
Have you been referred to a physiotherapist for chest clearing technics ? I completely understand the pain that occurs with constantly coughing, you should get back to your GP OR RESPIRATORY consultant for something to help you.
You take good care of yourself & hope you will be feeling much better soon xxx
Sorry to hear that you are feeling poorly. For me the thing that helps with the cough is an inhale of an over the counter remedy called “friars balsam”. I swear by it. Hope you start feeling brighter soon.
I can really sympathise with you, I also have suffered with lung disease all my life and do not know what it's like to feel "normal". I was diagnosed with bronchiectasis when I was around 11years old , doctors think I may have been born with the condition as the cause is unknown.
I also have many times when I feel sorry for myself because it's a vicious cycle, you feel your fighting a never ending battle which is not good for your mood.
Also because it is an invisible illness I find so many people don't understand when you try to explain ( for instance if you need to cancel anything if you have an exacerbation ). It's very difficult to keep positive even though this is my user name lol....!!!
Yep, this is exactly how I feel. It’s only just started bothering me though and I think it’s the fact that I have children who are now at the age that they are aware of mummy being poorly, so there’s that guilt factor too!
Hi Nibbles, Sorry to hear you are feeling unwell and have forgotten what it feels like to feel well . I know the feeling . I have alpha 1 antitrypsin deficency . Ive been diagnosed with bilateral bullous disease after my lung kept collapsing . Ive had half of my right lung removed and know its only a matter of time before the same occurs in my left lung . I feel very alone with this rubbish illness. Ive had no support and just left to get on with it , no rehab or anything . Ive never smoked or lived or worked in a smoky environment. Im continually tired and lacking in energy but feel when i go to the doctors they dont really know what they are dealing with. I hope you do well with your rehab and it helps you ! 👍
It's awful how people are left to get on with it ( self-manage ), but there are times when we really need some support after all it is a life long illness.
I see the wonderful support provided to cancer patients by the Macmillian nurses which is priceless.
Patients with lung disease seem to have been forgotten about and this needs to change 😡
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