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Old 12-13-2012, 11:53 AM   #1
Join Date: Dec 2012
Location: golden,co
Posts: 2
garfieldmom2 HB User
Unhappy RBILD and COPD

Hi I was diagnosed in oct 2006 with RBILD. I was devasted as I was only 30yrs old. I have 3 kids and did not want to miss them growing up. I quit smoking for 1 1/2yrs. This did not help my lungs. I have been progressivly getting worse. In 2010 the Drs. added COPD to my list of problems. I lived in Florida all my life and the humidity seemed to be making my breathing worse. We moved to Colorado 1 1/2yrs ago and it is still getting worse. I started seeing a new DR. in Sept 2012 and she put me on oxygen to try and help. I have been on numerous inhalers over the years to no avail they do not help at all. I started smoking after I put on 60lbs and the weight was causing me lung and heart problems. It seems like either I smoke or gain weight which is both doing damage. The last time I had an MRI the nodules were 6mm in size. My new Dr does not seem to understand the affect this has had on me emotionally or physically. I dont know how to find a Dr here that knows about this disease and the new one. I havent had an MRI since 2010 so I dont know how bad it is now. Just that they now say i have COPD. Being that it progressed to COPD in 4 yrs I dont know how to find out how long I have with my family. I have seen many doctors over the past 6yrs and alot of them are scared of me because of my medical history. It has gotten to the point that its hard to get dressed, talk on the phone etc. My anxiety is so bad I just cry at the drop of a hat. I have asked my dr to give me something for the anxiety and she gave me wellbutrin for the smoking and said it should help with the anxiety but it doesnt. I have tried to get disability and of course was denied 2 weeks ago. Now I have to get this Dr to write me a letter. I doubt she will do that being she doesnt want to treat my other issues. I dont know what to do. I have no social life because I am scared of getting sick. My dr in Florida told me to stay away from anyone sick because it could be very detremential for me if I get sick. So I have no friends or anything here. I dont know what to do or if there is a Dr here in Colorado that knows how to treat both of these lung diseases. I did see a pulmo Dr in Sept and she just agreed to the oxygen and said see you in 6months.

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Old 12-13-2012, 11:55 PM   #2
Senior Member
Join Date: Nov 2002
Location: australia
Posts: 143
star_light221 HB User

My friend has emphysemia ,or so they say,she has dry lungs,no congestion and does not get the flue,she was diagnosed 14 years ago by xray, ,her spirometer is always above average, i feel copd has been used quite loosely expecially for smokers,i have asthma,my mum had asthma and she never smoked a day in her life,i weeze,my friend does not,go figure';';smiling
I do not know anything about RBILD,could you tell me more,

Old 12-14-2012, 03:13 PM   #3
Join Date: Dec 2012
Location: golden,co
Posts: 2
garfieldmom2 HB User

RBILD stands for respitory bronchiolitis interstial lung disease. From what Ive heard there is no cure as it is rare. It is caused by smoking. It supposedly is to slow down when you quit smoking. I have done numerous times and it does not seem to be slowing at all. My doctor told me when I was diagnosed at 30yrs old, you basically suffocate. This scares me to death. What it does is it traps co in your lungs and doesnt let it all out so it damages the tissue. I have changed my diet, exercising and smoking but it is not helping. I had no coughing, sob etc. I went for a routine scan for my dr and then they called me 3 months later and said I needed to do another scan. I asked why and that is when I was told their was a spot on my left lung. I was told not to worry it was propably nothing. After my second scan my dr called immediatley and told me I had nemourous spots and she was sending me to a pulmo dr. They did all kinds of testing very fast because it was spreading quickly. They thought it was cancer so they sent me to a cancer hosp and I had surgery and the biopsy came back not cancer that it was this RBILD stuff.

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