hi everyone my beautiful friends I’m wondering if anyone could help my husband has had an xray on his chest ie lungs and it’s came saying
Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred but we’re wondering what it actually is as he’s not a smoker or he’s never had an infection in his lungs before or any illness regarding his lungs, I’m just all over to place not known what it could be lots of love Michelle x
Plenty of people with PF never smoked and if it's IPF, I being idiopathic, there's no identifiable cause. This diagnosis must be quite a shock. I would wait to see a respiratory consultant as they will do a battery of tests to find the cause. There's a range of outcomes with pulmonary fibrosis so I wouldn't panic too much just yet. Action For Pulmonary Fibrosis have a helpline you can contact too, and there's the respiratory nurses with Asthma and Lung UK.
Also pulmonary fibrosis itself is a lung disease with a range of causes as I say, that causes progressive lung scarring and reduced lung function, until such a point that either a lung transplant will be necessary or it would be time to look at end of life care. Getting to that point could take 2 years could be 25+ years. As I say, depends on the cause which the doctors will try to identify.
My strongest sympathies that you and your husband especially are going through this.
thankyou JHutton94 for all the information just quite a shock as he’s only 41 and fit and healthy we have a scan tomorrow so praying it’s not bad news 🙏but thankyou so much for all the information, as my mum passed with lung cancer 2 years ago and it has broken me
Thankyou Michelle
All the best for your husband's scan tomorrow. Hope it helps the consultant find the most effective treatments for him.
So sorry to read your hubby has this diagnosis out of the blue. I hope the consultant can put your mind to rest and get on a treatment plan that will help. Let us know how you get on x
Hi, I have scarring and never really had it explained. I have COPD and smoked 29 years ago. so that is the cause. I have had this for a few years..
Hi Elsy. Have they just said scarring of the lungs or is it Pulmonary fibrosis. I was told four or five years ago I have interstitial scarring but they have assured me it’s not Pulmonary fibrosis. I worried it might have been.
Hi mavary it says on the letter pulmonary fibrosis from his first scan , we’re just back from hospital for another X ray so not sure what is happening really confused this is all happened in the last 2 weeks im praying it’s not pulmonary fibrosis I don’t think I can handle it to be honest I’m really scared and worried , but what else could it be if it’s scarring he’s not had any infection or any illness in the last years
Thanks Michelle
It's understandable to be concerned while waiting for answers.i always try to think " nothing to worry about until they say there is".I try to look at ea diagnosis,& I've a lot,as a positive - whn u know what's going on,u can learn about it,how to manage it & receive medical input & support.id make a list of questions as they pop up so hubby can put to consultant.the gd news is u say hubby's fit & healthy.i hope he soon sees consultant so u both know what's going on+ how to move forward.the forums here 4 u both 💕
Thankyou patk1 for your kind words all these answers have made me feel a little less worried even tho I’m still a nervous wreck and thinking the worst as I just lost my mum to lung cancer 2 years ago , so another lung issue with my husband is so frightening for both of us I’m praying so hard he has years left to live as he’s only 42 I just can’t get my head around it and I’m staying away from dr google that is horrible reading that , it mentions life span ect 🙈
Thanyou Michelle
Hi Elsy. There is two different Pulmonary fibrosis. With one you can live for years. It would help if you knew which type it is. Maybe speak to your Dr as they might have the results back from the hospital. Or if you know the name of the Consultant you may be able to ring the Secretary and ask her if she can find out for you. It’s not fair to leave people without a proper understanding.
Hi etsy12345
I can understand the worry and how anxious you both must feel. As stated previously, you may not find out the cause if it's idiopathic PF. I myself have PF which was caused by having lupus with a scleroderma overlap. Please don't Dr Google as it gives details of limited life , the end is nigh. This isn't the case anymore, no one can say what path your husband will go down as it's unknown, it's not always the case of needing a lung transplant or palliative care. I'm in a support group and three of the members were told to basically get their lives in order as they had 2 to 5 yrs to live..........that was 14 yrs ago and they're still going strong. Your husband's condition will never get better or be cured but there's medication out there that does wonders and can prevent or slow down the rate of PF. Have a think of questions you would like answered and arrange to go with your husband to his next respiratory appointment so you will also have a better understanding . I hope this helps a little 🌹
Sorry to hear about your husband. 2014 I had a pain in my left side and I was sent for a xray and it came back that I have scaring on the lower lobes of my both lungs. I have never smoked and always try to avoid second hand smoke as much as I can. After several scans and investigations, I was told I had interstitial lungs disease.
It is now 10 years and they still have not found the cause of the scaring and it is getting worse.
My consultant told me 3 months ago "to tell you the truth we cannot say what is causing the scaring on your lungs. This is a mystery".
Next week I will be having a biopsy because my resent CT scan shows a small growth on my lungs. I was very scared, but with the encouragement of members on the group. I am feeling a bit relax and is ready to have the biopsy done.
Long lungs
COPD? 
Fluid on the lungs
clean lungs
COPD and Hyperinflated Lung's or as radiologist like to say Long Lungs
