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

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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...!!!

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