New to this site

Hi, so happy to find this site. I was diagnosed 2 years ago as having bullae in lungs with a not too bad part. The pulmonologist said he wouldn't call it emphysema and said I just have copd. Didn't stage it. All other doctors I see say it's emphysema. I have had several failed attempts of quitting smoking, but after reading some of these posts I just tossed my cigarettes as you all gave me hope of maybe living another 25-30 years. I'm 56. A lot of the American sites are vague and suggest death sooner rather than later. I'm due for another CT scan & PFT in a couple of months. I've also got one nodule on the left lung. It's small and hasn't grown yet. We will see if that changed come October. I also wonder if I should be on any inhalers as I am vert tired, short of breath and occasionally my lungs feel like they're burning. Anyhow, thanks for giving me hope and I want to learn how to take care of myself & live well with this disease.

11 Replies

  • Hi,

    Welcome to the site. I don't have any experience of your condition but am sure you will get advice from lots of people now you are here.

    Take care


  • Hello and well done you on giving up the ciggies... The first and most important step on your quest to keep well 😊

  • Welcome to the site, we all get overwhelmed with this, that and the other with regard to our illnesses......... some doctors treat us like children and others overwhelm us with technical you will find some interesting, compassionate and knowledgeable folk, who will help you along.

  • Hmm, the last time I was in hospital , I was invited to chat , from my bed , to a group of 2nd year trainee" Doctors" , on how I cope with C.O.P.D. , at the end of talking to six of them , male and female, the Senior Doctor in charge of these Student "Doctors" , asked if I had any " Advice " for them , so, I just said , " ALWAYS REMEMBER WHEN YOU QUALIFY AS A DOCTOR - YOU ARE TREATING A HUMAN BEING - NOT A DISEASE - MANY DOCTORS SEEM TO FORGET THAT " , the Senior Doctor said on hearing that remark - "Brilliant " ! - never heard anyone make that observation before, " and duly wrote it in her book !! - LETS HOPE THOSE STUUDENT DOCTORS REMEMBER WHAT A HUMBLE PATIENT SAID !, - AND PRACTICE IT !.....

  • Hello Sam,stopping smoking is essential to curbing the progress of Copd,seems to be a bit of confusion as to what exactly is going on with you.Why not give the BLF help line a call and see what they say?I have very severe emphysema,Fev1 20%, hoping to get some valves fitted soon.Best of luck D.

  • Thank you. I know I have emphysema but had given up any hope of living very long. I have one small nodule in my lung which is checked yearly for changes. Last C T done fall 2014 and it was stable, no changes seen. I wish doctors wouldn't play word games. I also wish they'd be a bit more aggressive in treatment & more compassionate when discussing things. This site is positive and giving me hope that if I take better care I can live a very long time.

  • Hi again, wow I really admire you! Sounds like you're struggling with a lot of health issues yet you remain positive & have a good sense of humor. I never heard of lung valves. Is this something new? What do they do? I'm in the U.S. and this is first site I've found to be very positive. I'm keeping you in my thoughts & hope all goes well for you.

  • Hi Sam,if you google " treating emphysema with valves " you,ll find better explanations than I could provide.We did discuss transplant but my liver is damaged from past overindulgences and would cause problems.Most of us on this site are pretty positive due to the help we give each other.I am 59 years old and plan on being around for at least another twenty years,just to annoy the wife if nothing else lol.Most of my " other " issues seem to be caused by the medication I need to take to alleviate my condition i.e. Steroids.Take care D. 💐

  • You must quit smoking! I know it is hard. I quit smoking at age 36, but was just diagnosed (mild) at age 53. (Damn). Doctor said I could easily live to be 90. My mother was diagnosed at 60 (moderate or severe) and recently died from the disease at 81. Her 60-80 was good quality of life.

    All the best to you, and don't listen to those sites, they have outdated info.

  • hi well done giving up the smoking I to have bullae emphysema I had op to remove part of lung . talk to your gp about inhalers you should be on a reliver inhaler like ventolin to take when use get breath less as an when needed and normal you get put on a different one you take every day even if you feel ok im on sebri breezhaler which I take once aday and also seretide which I take 2 times a day then the reliver too

  • Hi Samcar and welcome to the site. It's much better than the US sites as they do tend to be doom and gloom, as they have to pay for their medical care, I put it down to scaremongering through sheer greed.

    Well done for quitting smoking.

    it's brilliant that this site has given you the incentive to stop, because doom and gloom makes people more inclined to think it's too late and that is definitely, so not true. xx

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