I have desquamative interstitial pneumonitis (D.I.P for short) and was wondering if anyone else knows/has this condition please

I have had breathing difficulties for a few years now. Last year i had an open lung biopsy and the result was this diagnosis. Finding information on my condition is nearly impossible as it's so rare. All i do know is that it is idiopathic and i am going to need a double lung transplant. From the information i've been given, i'm in the 3rd stage of the disease. I am just really hoping someone out there has had a similar experience, how they've coped with it and if anyone has had a transplant before that could help me find a positive perspective on all this

4 Replies

Hi Mathew sorry to read about your problems ... i know its hard but you have to stay posative

Sounds like you have lung abceses thats why thay need to check .. a surpose given your biopsy things could of been worse if thats any consolation

But year there is not much on here about lung abceses and pneumonia but i was going to do few post myself given its all part of lung diease if not complex as most doctors use diffrent terms .. anyway ye but there are quite a few waiting and have had transplants so am sure will be along soon

Cheers wishing you well and all the best

Hi Mathew I'm so sorry to hear of your illness its bad enough coping with COPD let alone a illness that is rare try ringing the BLF help line they help everyone with lung problems and I think it is best to talk to someone who is dealing with lung conditions rather than Google, good luck

Hi Mathew, sounds scary. I was offered the open lung surgery in 2008 but I declined. I am annoyed however that they did not offer me the camera down. Now it is 2014 I have a different consultant, he used the camera method but I was too ill at the time to do it really. But he did not agree with the first consultant who said it was interstitual alveolitus from my parakeet I had. I have it confirmed I now have pulminary fibrosis and it is at the bad stages. They still do not know what has caused it though. My daughter and I both think it was the hairspray I have used for years. I am so very pleased for you Mathew that you have been offered a lung transplant, that is fantastic news, grab it with both hands, I know it is a huge operation but think of the outcome, you will be free of all that horrible disease and what it can do to you. I can't have a transplant, I am too old at 66 years apparently, but I do not begrudge anyone else. I do hope you feel better soon.

Hi Matthew...Was curious as to what hairspray you were using...!!! I have DIP and I think it has something to do with my wife's hairspray...!!! When she uses it I have trouble breathing for awhile afterwards...!!! One of the ingredients is Propane...!!! Thanks...!!!

You may also like...