Hi I've never been on any message board so if I do this wrong-sorry. My mom has been recently diagnosed with lung disease, she called this morning and spelled it out but cant find it, think she may have copied it down a little wrong what she gave me was interspitial severe fibrosis, but looking that up I haven't found any thing, but some things that look sorta live this, do you know much about lung disease? Thanks Naomi777
My husband is 32 and has interstitial lung disease which is caused from rheumatoid arthritis in his lungs. He's had it since he was about 17 but doctors never figured it out until he was about 27 years old. He gets out of breath very easily, even just from laughing and he coughs a lot. Doctors have told him that he'll need a double lung transplant in 2 to 5 years. I think interstitial lung disease or pulmonary fibrosis (which doctors have also called his condition) can have many causes. His was from the arthritis. He is on Methotrexate to treat the arthritis and some other medications. He deals with it all really well though and has a positive attitude. I hope your Mom will be able to get the right help she needs.
Yes your Mother did write it down wrong she was probably very upset you did spell it right it is interstitial lung disease. I have it also along with fibosis that is scaring in the lungs along with hypertension which is high blood pressure in the lungs there are over 200 causes for these diseases most of which is from chemical exposure, smoking, and genetic inhereted. Autoimmune disease is also another big culprit which is what I have as well.
I was recently diagnosed and know how scared you and your Mother feel.
I was put on home oxygen 24/7 and will be put on medications soon as my testing is still going on. There are many tests that have to be done so Mom can get the best treatment for her illness. I have read many posts were lots of different meds work for people for a long time. Wishing you and Mom the best.
Hi, I am new to this and hope I am doing this right. I am 29 years old soon to be 30 in July, I was dignoised with pulmonary fibrosis relalated to RA two months ago. I am on o2 24/7. I was dignoised with RA in 1995 a senior in high school. It took a while it get undercontrol, but was able to to go on to collage and recieve a deerge in nursing and become a nurse working full time. Now i am applying for SSI because the MD said as of right now you are disable. That hurt for a time, but honestly I am ok about the whole thing, don't get me wrong I would love to be at work I love working. The thing that gets me is I fell like i am trapped in side or limited time when i am out due to the o2. Does any one have the same thoughts. Please let me know, i would like to here your suggestions.
I have autoimmune hep with cirrhosis, pulmonary fibrosis and hypertension as well and yes it is a real pain dragging along the O2 I do it all the time but I ride the carts in the store that is when I have the energy to go out, don't worry you will get used to it. I am glad to hear that you persuded a college degree you should be very proud even though you miss working that is quite an accomplishment. I miss working too. I used to manage an Assisted Living Senior Retirement Community with over 200 residence it was quite challenging and never boring. I wish you the best of luck.
Yes, limited in time but you can carry enough o2 for a good while. I have 2 -6 hour portables and 2 -3 hour portables, pain in the a.. yes but better than no breathing at all. Stay Positive!! I too have PF/PH/APNEA/DIABETIES/BREAST CANCER/ and probably a few more things just for fun..Hang in there!
I have had RA for 5 years and had been on methotextrate for 4 years. Last year I began to have extreme shortness of breathe and they discovered interstitial pulmonary fibrosis and immediately stopped the methotextrate and started me on Imuran along with the Embrel that I have been on for 3.5 years. Yesterday I saw an research specialists and he confirms everything the other 2 pulmongolists say but my o2 saturation never changes. All you guys are on O2 and I never need any which is great but he doesn´t understand that. Has that happened to any of you? Thanks