emphysema

[Brian1964b]

hi iv been diagnosed with emphysema after having a ct scan ,iv contacted my doctors but I'm still waiting for them to get back to me ,iv been waiting last week and all weekend, iv been reading on the Internet that after emphysema had been diagnosed il have up to 5 years to live ,could anyone tell me what to expect from thus as I have no idea how this emphysema is going to effect and shorten my life

[CDPO16]

Hi and welcome Brian. I was diagnosed with emphysema in 2014 and am still here. The disease has worsened over the years in my case quite quickly but we have members on the forum who have had the disease for far longer and are still going strong.The asthma+lung uk site have many useful information leaflets about living well with lung disease that you can send for. It may also be to your advantage to ask your GP to refer you for a pulmonary rehabilitation course where you will learn levels of exercise appropriate to you and healthy ways of self management. Stay away from Dr Google but NHS information sites are reputable.

[Damon1864 Volunteer]

Please don't worry Brian you can live a long time with emphysema, take no notice of the internet. Lots of people have lived twenty years and more, depends on the lifestyle you choose. Stay positive, eat healthy , drink plenty so you don't dehydrate and exercise these can help slow it down. If you ever need to talk there is always some here ready to listen or pm me. You have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[teenieleek]

Hi Brian, Firstly, don’t panic. Information from Dr Google is often very outdated. You need proper information about the stage you’re at: mild; moderate; severe or very severe. However even with that people experience the same stage differently. I have had emphysema for over 20 years now. Depending on how old you are that could seem like a long time or if you’re young not long enough. However, I have no plans to be going anywhere anytime soon…..apart from Amsterdam next week and Canada next year!

There is a lot you can do to help yourself. If you still smoke you must stop….really it’s essential. Most of the scary statistics on the internet relate to people who don’t stop because many don’t. There’s lots of help available, take it and we’ll hear how you get on.

[corriena]

I was diagnosed as sever emphacemia when i was 35, i changed my lifestyle, good food, exercise, and generaly being aware and im still hear and doing ok at 55 ish 😉. Please dont think this is the end its just a different journey to the one you were expecting. Ask for advice on hear or asthma british lung helpline (very good info) when looking on the internet remember treatment varies from country to country even though the illness is the same. And badger your dr for info and help. Its like most new things it will take time to adjust and learn but you can get on with a full life. maybe with some adjustments

[Maricopa]

Very rare one newly diagnosed with emphysema would die in five years. Seriously. Many live 20 years and more.

[slram]

You will lose your mind if you look health conditions up on the internet. Ignore that garbage and just live your life to the best of your ability, try holistic things and listen to your doctor.

[d0ttysslave]

Hello Brian,

I am still awaiting formal diagnosis, and I was also panicked by information from a website that suggested five years to live. However, my husband has a friend who has been living with the condition for thirty years, so I was able to question the figures.

[garshe]

Worse thing to do is Google. We are all different. It's a progressive disease and you can determine how fast it progresses or how to slow it down. I was diagnosed Severe COPD 2010 diagnosis on Google 1 - 3 yrs I'm still here .Just remember its Progressive not Terminal.

Be Positive and enjoy what you can do and not what you cant.

Have a lovely day xxSheila 🙌💕

[Patk1]

Hello+welcome to the forumEmphysaema is COPD( chronic obstructive airways disease).u can ring ALUK helpline no. Available on the website and chat to a nurse.

Also they have loads of info and advice

[Alberta56]

Hello Brian and welcome. My reaction to internet advice is almost unprintable. (' B******s!) is the abbreviated version. They really should take down posts which worry people unnecessarily. I hope all the other posts on here have reassured you. For what it's worth my dad was diagnosed with emphysema in his early 70ies and lived into his early eighties, with none of the medical help and advice on lifestyle available now. He had smoked all his life and never really managed to kick it, the silly old gentleman. Good luck with getting advice to help you live well.

[Spotthejock]

Hi Brian,With regards to given expired dates,following my chemo and upper right lobectomy and a short period of convalescence,bored sitting at home I met with my GP in Feb 2009 to request a return to work.His response? Why don't you take some quality time out with your family,you have only two years Max left to live.He went on to say "You know I once had a Lung Cancer patient who managed to survive 5 years,but you are not him.

Well every five years I send that GP a anniversary card of my survival,funnily enough he has never replied?

This is my forth year of being dxd with COPD,which I am sure I have had this mfor far more years always believing my SOB was due to my lobectomy.

Refer to the stats on Google for LC and read in the UK on survivorship and discover 80% of those dxd with it die in the first year,the stats for 5 years for survivorship leave only 7% alive.

Well I haven't a clue about what my COPD consists of,only that it's graded mild three years ago and following a second spirometry test last Thursday there is no progression I remain in the grade mild.

I think you should forget thinking about your imminent passing and focus on enjoying living you have many years in front of you to come.

[HollyBoyd]

Hello Brian, welcome to the forum. You have had some fantastic replies from the members, all giving you their own experience of emphysema. I can only reiterate their advice as I too have had the condition for over 20 years. You will find the members here can help in many ways, so do come back and ask if you feel there is more you need to know. Wishing you all the best with your future xxx

[Nicholatracy]

Welcome…….please stay off the internet, nothing but doom and gloom. I was diagnosed in 2014 also. I exercise pretty much every day, make sure I take my medications and do everything I did before, albeit on occasion a little slower. I live in south texas so way too hot to walk. I have a Cubii which I got from QVC to exercise my legs, an arm machine to help my arms and a treadmill. A lot of wisdom to be found on this site in addition to humour. Stay strong 🐞🐞🐞

[Mickymoo in reply to Nicholatracy]

Can I ask which inhaler you are using. Mines doesn't seem to help!

[Nicholatracy in reply to Mickymoo]

I am on Spiriva which I take one a day and Advair twice a day 🐞

[Brian1964b]

Hi everyone and thank you all for this overwhelming response, my head has been in a real bad place this last week ,worried out of my mind,thinking the worst all the time,but after reading all your emails you have really made me feel much better ,a few days ago I never even new you all existed and now you all have been here helping me,your responses have touched my heart knowing people care so much,I still haven't heard back from the doctors yet but I'm sure there busy,a lot of people are having ct scans in my area at the moment, yes I realise now that stuff on the Internet is a lot of scare mongering stuff not to be read ,thank you all for your positive responses ,I will read this forum daily now because it's so helpful, I will tell of my journey with emphysema, and hopefully I will help other people like you have all helped me so much in just a day ,again thank you all