HI! i'm new to this board my name is sabrina, the reason why i'm here i have a story to tell and a probleme that nobody so far seems to know what i have,its started 6 months ago, Now keep in mind I dont smoke and i'm a athelet and i use to work out 4 times a week and played hockey (can do that no more)anyways last august near the end,i was starting to have trouble breading deeply shortness of breath,but i tough it was normal because i do so much sports,until the end of september when i was breathing deeply i had this very bad pain in my trachea,so thinking it was my nose,because ever since the age of 16 i hade a deviated septum,and chornic sinusis and post nasal drip i tough that's what was causing my problemes,so i went to see my ENT doctor,wicht he operated me and the end of october ,(october 31)anyways for one week afther the operation i tough the probleme was gone,i even went back playing hockey 3 weeks lather,but afther the 4 week everything came back worst, i can even go up the stairs i have trouble sallowing,bad cough that i hade for 6 months but now its worst i can control it once its stars,so i've been 2 times to the emergency, because i collaspe,i saw maybe 5 doctors and nobody so far can tell me anything,i saw a lung specialist,he said maybe a blood clot, but the probleme is for them its not a emergency so they make you wait,and i had a bad x-mas and new year because i CANT do anything so this past week end i ended up in a hospital again because i pass out again,this time they game me a CT scan now the guy that passe you the test came in only for me today,because the day before they found my blood was very tick, blood clot type,so the CT scan tecnitien told me he found something,he maybe me absor areosol by the lung but what he did not understande it that it went all over my body he could see my head and my vital organs and everything and this is without getting anything injected and then when he did again afther another test he injected something but its supose to only go to my lungs he said and it went all over the place :eek: so even if he is not a doctor he see this stuff everyday and he said that usually everybody passes this test and the come out negatif,but he said me i do have something he think maybe a hole somewere in my lungs or heart causing this probleme and when he said that it mades more sence,afther i saw the emergency doctor and he was kinda stupit because he was like(oh well its not a bloot clot its not a life treathing thing)then when i ask him what was wrong with my blood and that thing the guy found he could not say,so now i have to see a blood specialist cause my bloot clotting and my inflamation they saw and also a lung specialist,i hope soon,cause the pain is getting worst,my breading worst i lost 20 pounds because i can hardly eat and i can hardly stand up,so so far they said INTERSTITIAL LUNG DIEASE ,so what i want to know and i need suport is doyou know anything about that?or expirience something like me or anybody here you saw that might of had this?thank you so much!!!! :wave:

Hi Sabrina--

About the Interstitial Lung disease. There are many ILD's. One that I am familiar with is called Idiopathic Pulmonary Fibrosis. It is a scarring on the lungs. My Mother and brother both sucumbbed to this disease at 56 and 46 years old. Theirs was of an auto immune nature. There is also a familial type, which is even more rare.

Have you been to see a Pulmonologist or Lung Specialist? If they told you you have ILD, then you need to see a DR. who specializes in Lung diseases. Did you have a CT scan? In most cases, they don't diagnose it until an open lung biopsy is done.
Good luck Sabrina.

DEDA

after diag. how long before the end

Dreala,
Think Positive not negative on how long you have left with ILD...I have the same thing have had it going on 5 yrs. I do not like having it because I they found it when I was 37, even though they said it was most likely i've had it all my life. I have a young son I'd like to be around for for a long time yet. It's all about how you think of the disease. My lung dr. told me I have a good attitude for having such a dreaded disease, positive attitudes keep you going longer than negative ones. Best of Luck! :wave