British Lung Foundation
33,844 members • 41,284 posts

Ipf......anyone out there ?? 💜💜💜💜💜💜

Ipf ..... Been diagnosed 3 yes now i am 48 female waiting for lung transplant hopefully this yr..... On a bit of a wobble at the mo health wise but hopefully it won't last much longer get v v v tired just standing up going to loo....... Getting dressed is really hard and takes me kids are brilliant my heart is now regularly over 140 just sitting and 170 when moving it scares me to bits but doctors are on it.......i have been on oxygen 24/7 over a yr now .....would like to chat to anyone in similar position..... Apart from my lungs I am really well never smoked never did drugs never did alcohol.......... God I sound boring don't I hahaha.........

7 Replies
oldest • newest

Welcome to this brilliant forum. You sound amazingly strong. But it is obviously very hard for you just coping with everyday life. There are several here in a similar situation. You will gets loads of help, advice and shedloads of care and support here.

All the best and keep us informed of what is happening.

K x


Hi there. I haven't got IPF, but there are several members who have and I'm sure that someone will be along soon. I just wanted to say welcome to the group, and I hope that you find what you're looking for.........lots of friendly people and great support available, and it sounds like you could with an understanding ear. You seem to be coping extremely well......great positive attitude. Good luck and keep in touch.



Hi Moonboat, I have IPF (diagnosed almost 5 years ago now). We have a lot in common. Like you, I've never smoked and had always been healthy before this. I was doing quite well until December but it's all been down hill since then. I have no energy and struggle with all the basics. My biggest problem is clearing my lungs of mucus which takes most of the day and night. I'm being considered for transplant but was too well last time I visited Newcastle - I'm pretty sure that situation has changed now but I don't see my consultant until next month.

Feel free to contact me any time for a chat.

Best Wishes,



Would love to chat Helen I also am under Newcastle. I have taken a dip last 2_wks it feels like a big dip ATM but I will be good its my heart now feeling v tired x


Hi Moonboat, if you would like to chat privately you can send a personal message by clicking on my name at the top of my message.

Look after yourself,



Please join Pulmonary Fibrosis UK on Facebook it's a closed group and all of us have PF or IPF it's a brilliant site several have had transplants or are waiting,there is always someone who can answer your questions,I couldn't survive without the support offered,they also have lists of the support groups around the UK.Sooki.

1 like

oioi i had ipf and transplant march 2016 so anything you want to know feel free to ask me the one thing ill say now and i know its hard is train train train the more the easyer it is i spent night after night panting and fighting for my breath but it paid loads back at transplant


You may also like...