Feeling scared!!!

I've been to and from Dr's past 2 years saying I'm sob and never got no where no test's nothing I got told your young (44) at the time, you go to the gym all the time and you don't smoke it's all in your head. I had pnumonia 7 yrs ago which came out of no where and 6 months ago I had a pneumothorax which I had to have a drain in my chest to drain the air away. I feel so much better since they've drained the air away but still feel I need more oxygen at times. I've finally had a CT scan and my results came through 2nd class post saying There are very tiny small areas of emphysema. This is nothing to worry about and there is certainly no significant disease in the lung. I'm frantic with worry is this one lung or both? I'm scared of what the future holds, I've a husband and 4 children who I adore. Is there anyone who can give any positive advice as I went to my Drs yesterday with this letter and asked him if I've only a short time to live. He ignored the question fully and told me to go back to speacilist to ask him questions.

14 Replies

  • Hello happiness123. I have very severe emphysema Stage 4. I got diagnosed 4 years ago. I haven't got any worse since.

    Please don't worry. I very much doubt your emphysema will shorten your life. Just don't smoke ( if you do ) and keep active. Stay away from infections. You'll probably live as long as someone who has healthy lungs. A lot of us made the same mistake of reading stuff on the web. There are people on here who have had emphysema for over 20 years.

  • Hi Puffthemagicdragon. Thanks for that I'm new on here and I have been reading up on emphysema which has scared the living daylights out of me. It's good to know your condition hasn't worsened. I've never smoked and will keep up with the exercise routines.

    Thank you for your reply

    Julie x

  • Call me Puff. The others do. :)

    Just to add. Ask your doctor to refer you to a Pulmonary consultant. That way you will get proper tests and the correct medicines. You may find you have to push your doc a bit but don't be fobbed off.

  • Hi there,

    I cannot help you with the question of if you only have a short time to live and the dr can also not answer that question. You see, you could be hit by a bus tomorrow which would have nothing to do with your lungs.

    I think your GP is right go and talk to the specialist as lung issues can be very complex and specialists often struggle to come up with a diagnosis. It may well be the case that the signs of your emphysema are not ever going to bother you, but since you don't smoke and are quite young you may ask for alfa 1 antitrypsin test a syndrome that can lead to emphysema.

    It seems also that your lungs are a bit sensitive: if I was you I would implement the following strategies: - get annual flu vaccination and also get pneumonia vaccination, - avoid colds and flus by washing your hands often, using sanitising hand gel, avoiding sick people and using Vicks First Defence Nasal Spray , - if you feel like you are getting a chest infection see your dr immediately and ask for antibiotics, - building your immune system by taking Vit C, Vit D (get a blood check to see if you are deficient), probiotics, garlic and other supplements you fancy (best to check with your dr about the ones you want to take) - exercise, - eat healthy and live healthy, - have lots of fun with your children and husband.

    Try not to google as there are so many worrying conditions out there that you may never have to think about.... Please see the specialist again, ask for the alfa 1 antitrypsin test and talk about your questions. In the meantime try not worry it won't help...... Let us know how you go, best wishesxxxx

  • Hi Happiness123 and welcome. Many of us have the done the web search and scared ourselves witless. I'd say the fact the letter said there are only small areas affected and your lungs are good and it's nothing to worry about, is good.

    Your Docter had probably not even read your letter until you showed it to him so, could have been feeling a bit guilty for fobbing you off for so long. It probably just took him by surprise. My docter's never read letters that aren't flagged as urgent either.

    Jenss's and Puff's advice is spot on. Get the test done and then you can just get on with your life. Your fit, you don't smoke, so alls good. I've read of people who were diagnosed with severe emphysema, who are still alive and kicking 20 and even 30 years later. Knowing that, has put my worries on the back burner, where they belong, so you try not to worry. xx

  • I have Pulmonary Hypertension and when anyone joins our FB group the first thin we say to them is DONT GOOGLE

  • Hi casper99

    Thank you for the positive reply makes me feel a lot better reading this I will ask for this test and I'll try not to worry. I'm having some kind of spiro hour long test done next week, I don't know if that's just to see how much lung capacity I have I'm unsure.

    Thanks for advice

    Julie x

  • Great advice as always. Just keep doing what your doing, don't smoke keep exercising and try to eat healthily. But above all stop worrying, enjoy your family and life you'll be fine. And stop googling, if you want advice come and ask us.

    Kim xxx

  • I found the posts on this forum really helpful - they put everything into perspective, as there are lots of wonderful people sharing how they are getting on with or despite their diagnosis. I've found all their suggestions really helpful, and my house is turning into a collection of things that can help. I already have the Vicks First Defence and the Cough and Cold Block. I'm now waiting for a salt pipe and a salt lamp to be delivered.

  • My family were told 3 different times in 2008 I was not going to survive the night! Still here and causing mayhem! I am sorry to say we all have an end date, but as you have said it is very mild and you and the consultant are aware of it and can treat as appropriate. GP's do not know it all and your GP may not have the knowledge on that condition to give correct answers or advice?

    I have multiple conditions and to get the different consultants to speak to each other is a nightmare.

    Be Well

  • I was 42 when diagnosed with COPD I would change your GP

  • Hi onamission,

    How old are you now ? and I was thinking of changing my GP so going to do that after my sprio test on Thursday.

  • Hi Pat & Graham,

    Yes I got the information about the vitamins and I'll be ordering those asap, I know I should try not to worry but because I've only just been told I've got this so just trying to get my head around it. I keep getting waves of fear but they are coming less and less so I'm hoping in a couple of days I won't feel so bad. I really appreciate your concern and help.

    Thank you Julie x

  • Hi Julie

    You been given excellent advice. I can't really say much more. Did you have a spirometry test.Don't recall if you mentioned having that done. What inhaler are you using? I just want to

    welcome you to the site and tell you that you will be amazed how much you will learn.

    Rubyxx 😊 😊

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