Hi all, so today I got told I had emphysema by a nurse at the gp surgery. I have had this constant cough for about two years but always had asthma and then COVID came! Anyway after x rays found something with my right lung a ct scan was done last week and here I am!
I’m 34 never smoked I am overweight but I stupidly went on dr google. I’m a single parent to a six year old and at this moment I’m terrified I won’t see her grow up I’m not even to worried about me! I promise there is a question! Does anyone know if it’s just one lung dose that mean it’s been found earlier and because of my age does that mean I stand in better stead type thing! The irony my nana died from this at 78 last year she got 10 years from her diognosis but she refused to stop smoking smoked 60 a day bless her! So that’s my only knowledge of it.
Thanks for reading and any reply a huge thanks!
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Scramy
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Hi sorry to hear this. Because of your young age and family connection have you been offered the genetic test to find out if you have inherited it. If not ask for one.
You don't have to have been a smoker to get emphysema as long term second hand smoking can cause it. Also certain occupations such as the rag trade, construction etc.
Much depends on how severe you are. The more important figure is the FEV1 percentage as this gives your lung function. Over 90% (some say 80%) is considered just a variation of the norm. Did they tell you what stage you are at? 1 is the mildest up to 4 which is very severe. If you are at stage 1 then you have every chance of living a long relatively healthy life still.
However there are many here who are in the later stages and have been for many years and they aren't planning on going anywhere soon. They still have a good quality of life. What is most important is to lead a healthy lifestyle. Anytime you think you have got a chest infection or exacerbation (worsening of your symptoms without obvious cause) then it is very important to seek treatment quickly to avoid further damaging your lungs.
Oh and welcome to the site. There is nothing between us that we don't know about lung disease so look at previous posts and around the site for more info. You have joined a very friendly supportive HU family who all help and support each other.
I was diagnosed with Emphysema at the age of 40 and then after a CT scan last year it found I also had Bronchiectasis which was what was causing the constant cough, I am now aged 71 and still living a life so please don't fear you have any reason not to see your child grow up as no reason why you shouldn't. Eat as healthily as possible lose some weight if at all possible and exercise regularly even if only by walking as much as possible. Use any meds advised.
Thank you I know they always say never go on the internet but I know nothing about it so I had to google it. To see terminal illness and five year life expectancy wow! Thank you for the reply
Goodness knows why it showed a life expectancy of just 5 years that is stupid, you carry on living and just enjoy what ever life you have
Long term Asthma can lead to bronchiectasis. At your age, with no history of smoking I would be surprised if you have copd. It is astounding that a nurse gave you this information. They do not have the training to deal with this.Our practice nurse cannot even say bronchiectasis and unfortunately most GPs are out of their depth with lung conditions.
They cannot give you a diagnosis without all of the relevent tests, including spirometry.
You should see your GP about the ct scan and ask to be referred to a consultant who specialises in bronch for a proper interpretation of the scan. Even radiographers can get it wrong. Even I with lifelong bronch have had radiographers interpret my scan as pneumonia!
If you do have bronch it is important that you have the right ongoing consultant, your GP is instructed how to treat you and that you learn to self manage it asap. You can have a full life with bronch but you need to take charge.
Equally, a consultant can discount the presence of bronch and address your problem.
We have to be very pro active in our own interests.
Hi and welcome, I would get an urgent consultation with your GP for more clarification. Bronch and emphysema are not the same thing. As you are so young I think you should have a blood test to see if there is any hereditary factor that could cause emphysema. You also need to discuss the possibility of further tests such as lung function, treatment options and possibly a specialist referal. There is a lot of useful information available from the BLF but you need a definite diagnosis to know what you are dealing with. Whatever that may be with the right treatment and self care you can live a long life.
The time to start rethinking matters is when you have actual details of your illness by way of actual test results. As per other posters get the results of tests you should have had. If you have not had the test then is the time to request them. At your age your FEV1 isveryrelevant
Hi Scramy and welcome to the forum. I’d have to agree with what others have said and wait until you’ve got a full set of test results and some kind of interpretation.
It could be many things but in the event that you do have emphysema, it’s not anything like it seems to be from a Google search and a scan of (mostly) American health sites. The lovely people of this forum will happily share their knowledge and experience whatever’s going on.
Let us know how you get on with the GP and feel free to ask any questions in the meantime.
I’ve finally managed to get a gp to call me tomorrow. I’ve spoken to someone from BLF who was awesome. She has been through a lot with me. It all appears it hasn’t been handled very wellOn my go practice point of view but I now know what I’m asking for tomorrow. They have yet to refer me to a specialist despite having my results since Monday morning and haven’t booked me in for a blood test to rule out the genetic side of things so I know what I’m demanding tomorrow. Reading all the posts on here about people having it for 10/1520 years plus has given me massive hope from yesterday my only fear was leaving my little girl destroying her life by loosing her mum as a kid. But hopefully I am only at early stages and get on right inhaler get some fitness up go from there. I’m sure il be bothering you all again along the way. Thank you all from the bottom of my heart. And I hope your all well x
It’s actually unusual when a person dies in five years as google says. I know many people who’ve lived a very long time even with advanced copd. I alway wonder where they get those statistics on google anyway!
Aw bless you thank you. The lady at BLF said the spelist would do all that. Bloody hell why are they not informing people dosnt make sense. Coming on this has helped me so much just seeing the length of time people have been doognosed with it helps because dr google is a very scary doctor I think he may need striking off!!!!! X
Welcome to the forum. I wonder if there is any way to get Google to remove these inaccurate and alarming posts. It's good that you've been reassured and I hope that your medics will give you advice on how best to manage the condition, whatever it is. I imagine you get a fair amount of exercise with a six year old to look after.
Aw wow thank you. I finally spoke to a nurse practitioner. Who admitted she knew little about the dessise and had never treated anyone as young as me who isn’t a smoker. We went through the ct results it reads that it’s only in my right top lobe so I’m guessing that means it’s been caught early? We have discussed why I may have it so young ( I was born at 26 weeks and was ventilated for the first 6 months then on and off for a further 6) that’s all we can put it down to but it dosnt matter how many times a medical person tells me I shouldn’t be here I have no intention of leaving now! I’ve been referred to a specialist and have blood tests later this month for the A1Av form. So it’s now the waiting game. This is going to sound so very selfish but I had plans of progress at work adding to my family the waiting is the hardest as I’m sure everyone on here knows way pretty than me about it. X
You to my dear I can’t remember how long have you been diagnosed? And wow that’s awesome it’s so wounderful that everyone on here is so helpful I’m so glad I came on. Xx
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advice appreciated x 
advice please coping with relative with severe emphysema
Antibiotic advice please
Best wishes for 2023 plus advice needed
