hi im new to this site. i have recently been diagnosed with pulmonary LCH any one else with same condition i feel very isolated ?

[jac493]

[Puffthemagicdragon]

Sorry I can't help but be patient. I'm sure someone will be able to help and chat to you about it.

[jac493 in reply to Puffthemagicdragon]

thanks for advice . not sure if im using site correctly please feel free to put me right.

[Hidden]

Hi so sorry to hear you geel isolated ..

But you are not alone how server is your condition and how long have you been unwell

[jac493 in reply to Hidden]

Hi don't know how severe it is yet been unwell for about 4 months not on any treatment yet.

[Hidden in reply to jac493]

Hi thanks for replying ... Ad try not to worrie as that can make breathing worse .. But to be honest i think you should wait till you have spoken to your specilist as that could mean everthing and nothing ..

But if your smoking do need to stop and stay clear of any dust or toxins

Reason a say you should chat to your specilist is not telling you nothing .. You could have emphysema and bronchitiasis but i would seek clarification as that is a general term.

[jac493 in reply to Hidden]

already off the cigs got lch but it so rare its hard to get answers to ur questions

[Hidden in reply to jac493]

Agree in world of the own these specialist... Think its more going threw the process than being ignorant .. But you have to incest but in a nice way

[bock]

hello jac493 I also have LCH diagnosed 2 yrs ago I also have copd . I don.t know anyone else with this either but would like to offer my help if you have any questions. sharon

[jac493 in reply to bock]

Hi Sharon my name is Jackie u must have it pretty rough having both. I am just newly diagnosed and have no idea what the future holds for me

[Toci]

Smilejac493. Whatever you are facing you now do not need to do it alone.

[jac493 in reply to Toci]

Thanks Toci so glad I found this site . I feel so much more positive already

[bock]

I was really scared also but in lots of cases it doesn.t get any worse and I use to have ct scans every 6 mnths but only have chest xrays because it has stabilised . I been told after 5 yrs if im still stable the chances of relapse are minimal. I feel 100% better than 2yrs ago I just try to keep positive . I work full time and do everything the same as before just a bit slower.. Sharon x

[jac493 in reply to bock]

I am so glad to hear that I don't feel unwell but my breathing is limiting everything im able to do. I only got diagnosed 4wks ago so haven't had any treatment yet should see consultant in the next wk or so. Do u have any treatment for yours? oh I gave up the cigs 3wks ago.x

[bock]

I didn't give up the first year although I really tried and I had one infection after another ended up having to have lots of antibiotics and steroids ,since giving up smoking and eating more regular I got better and better with no infections in over a year . I take 2 inhalers to help with breathlessness each day . my breathing is limited to but u learn to adjust ,maybe we can help eachother , u done really well to stop smoking Sharon x

[jac493 in reply to bock]

Had to stop smoking i do a lot of hill walking am really missing it due to being so puffy. So i thought if i give up the smoking i am giving myself the best possible chance. Sounds like u been through the mill . Might be u helping me more im a novice .x

[jac493 in reply to bock]

Had to stop smoking i do a lot of hill walking am really missing it due to being so puffy. So i thought if i give up the smoking i am giving myself the best possible chance. Sounds like u been through the mill . Might be u helping me more im a novice .x

[longlungs]

hi jac493 welcome to this site which is full of great people who have a wealth of information and help you to feel you are not alone anymore. your doing really really doing well with your smoking,i stopped only 3 days ago and the support everybody has given to me is absolutely brilliant,a really friendly bunch of people.Janexx

[appyalison]

Hi jac493, well done for giving up cigs. You will begin to feel the benefits. I don't even know what LCH is so can't help with that. However I can offer you support, something we are very good at. So glad you have found Bock. Most of us felt confused and isolated at first but that soon imroves. Good luck. Alison

[Offcut]

well that's a new one but I see it stands for Pulmonary Langerhans Cell Histiocytosis might be worth a chat with the BLF helpline number is in the red balloon.

If you want a real heavy technical look at the condition you can find it here. radiographics.rsna.org/cont...

BTW welcome to the site

[Hidden]

Hi jac 493 , Sorry to hear about your diagnosis . Know what you mean about the isolation - my husband was diagnosed two years ago with IPH and we still can't find anyone else with this condition .Good luck Helen .