simon 126

Hello everyone i have had a pulmonary test showed severe airway obstruction with negative bronchodilator and severely reduced TLCO I have the servere form of COPD

and possible degree of lung fidrosis I am on inhalers and diazepam to help me sleep at night my condition started to get worse approx 12 weeks ago feeling very breathless the wife has had to call 999 three times I am still getting very breathless and very limited in all activities I am very anxious about the long term prognosis as this condition is irreversible,Thank You

6 Replies

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  • your story sounds very familiar, my husband has ipf and emphysema, and has also been hospitalised 3 times since november, he has deteriorated rapidly since this time last ear, but it affects everyone different and no-one can be sure of a definite prognosis, but yes, it's frightening, talk to your dr and ask him to explain as much as he can. Hope all goes well.

  • Thanks for your support amagran

  • Thank you Stitch for your helpful comments I will keep in touch

  • That sounds very frightening - the only advise I can give is ask all the questions you can to the Doctors and nurses and ask for support. It seems to me that you really have to become proactive and ask questions to get the right answers. I hope that you start to feel a little better and this blog gives you some support. TAD x

  • Hi Simon

    Welcome.

    So sorry you are having a rough time at the moment, I think you need extra support at this time, can the doc refer you to pulmonary rehabilitation, this will help you manage things better and also your condition will be monitored more closely. As things are I would say you need to be seeing the consultant every 2-3 month's. Ask your GP to refer you back to consultant for reassessment if you are not already seeing him/her.

    Hope you are feeling better soon.

  • Hello Simon,

    My dad has Pulmonary Fibrosis and Emphysema, if that is what you have then please know that it is a managable illness and te key is adapting your life so you can manage your illness and not your illness managing you. When you are first diagnosed, I know you will be scared, have a trillion questions and no doubt surf the web for answers, some of which you won't find.

    Knowledge is power, and apart fro the health professionals looking after you, the best advice you will get is from likewise people here who are experiencing the same as you so please take comfort from knowing that you are not alone and there is a great network of help there for you. I work for a major pharmacy chain and can tell you that they recognse the need for staff to be more aware of various illnesses inc COPD and that we are trained to help you and offer advice and support where needed so that is something in the pipeline that will offer a new service to COPD sufferers like you and my dad.

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