WinterAires
03-29-2001, 07:07 PM
Hi,
I'm new to this message board thing. I actually ended up here in my search for information. I was in the emergency room on Tuesday niht because I couldn't breathe. The doctor took a peak flow meter on me and I could only blow a 40. Yes I said forty. I was very loudly audibly wheezing and couldnt stop coughing. My oxygen saturation was only a 92. They immediately gave me a breathing treatment which consisted of Atrovent and Albuterol. At the end of the treatment I was still unable to breath and my oxygen saturation was down to 88 and my peak flow was 80. They gave me another treatment and still I couldnt stop coughing or wheezing so they took me to x-ray and then I got yet another treatment. The doctor came in and told me that I have Interstitial Lung Disease and that my x-rays were so impressively awful that he had to show another doctor just how bad my lungs were. They have started me on Methylprednisone, an inhaler every two hours, Zithromax, and Robitussin with Codeine and he told me that I need to have a repeat x-ray in 10 days and I need to see my usual physician. Thats all I have been told. In my search on the internet I have found several pages that say this is a terminal illness and that death usually occurs in four years from the onset of symptoms. Does anyone have any information regarding this? I also am wanting to find the cause for mine. I work in a substance abuse treatment facility that has a Composting facility right next to it and is actually situated right next to an airport. We are literally out in the boonies. The city or state or municipality decided that it would be appropriate to store contaminated soil all over the property surrounding our facility. I also must mention that the composting facility started composting fish last summer that caused an enormous infestation of flies literally millions of them in our facility. the compost also composts horse manure and I am anaphylactic to horses. Does anyone think that a mixtureof all of this could be the cause for my disease? The contaminated soil, the airport with all the jet fumes, the compost, the flies, the horse manure?
Please any information anyone could offer me would be greatly appreciated.
I'm new to this message board thing. I actually ended up here in my search for information. I was in the emergency room on Tuesday niht because I couldn't breathe. The doctor took a peak flow meter on me and I could only blow a 40. Yes I said forty. I was very loudly audibly wheezing and couldnt stop coughing. My oxygen saturation was only a 92. They immediately gave me a breathing treatment which consisted of Atrovent and Albuterol. At the end of the treatment I was still unable to breath and my oxygen saturation was down to 88 and my peak flow was 80. They gave me another treatment and still I couldnt stop coughing or wheezing so they took me to x-ray and then I got yet another treatment. The doctor came in and told me that I have Interstitial Lung Disease and that my x-rays were so impressively awful that he had to show another doctor just how bad my lungs were. They have started me on Methylprednisone, an inhaler every two hours, Zithromax, and Robitussin with Codeine and he told me that I need to have a repeat x-ray in 10 days and I need to see my usual physician. Thats all I have been told. In my search on the internet I have found several pages that say this is a terminal illness and that death usually occurs in four years from the onset of symptoms. Does anyone have any information regarding this? I also am wanting to find the cause for mine. I work in a substance abuse treatment facility that has a Composting facility right next to it and is actually situated right next to an airport. We are literally out in the boonies. The city or state or municipality decided that it would be appropriate to store contaminated soil all over the property surrounding our facility. I also must mention that the composting facility started composting fish last summer that caused an enormous infestation of flies literally millions of them in our facility. the compost also composts horse manure and I am anaphylactic to horses. Does anyone think that a mixtureof all of this could be the cause for my disease? The contaminated soil, the airport with all the jet fumes, the compost, the flies, the horse manure?
Please any information anyone could offer me would be greatly appreciated.
Sponsor
Robert2
03-29-2001, 10:48 PM
This is the name of a certain group of diseases. Didn't the doctors tell you which one it is?
Take a look at this website.
http://www.vh.org/Patients/IHB/IntMed/Pulmonary/InterstitialLungDz/TOC.html
This contains a lot of information about it.
Take a look at this website.
http://www.vh.org/Patients/IHB/IntMed/Pulmonary/InterstitialLungDz/TOC.html
This contains a lot of information about it.
WinterAires
03-29-2001, 11:30 PM
No the doctors didnt tell me which one of the 130 - 180 of these diseases I have, just that I have Interstitial Lung Disease and that I needed to follow up with another xray in 10 days and see my normal doc. I've read as much as I can on the internet and am hoping that someone here would have some real time info for me or suggestions.
Thanks Robert2 for replying.
Thanks Robert2 for replying.
Robert2
03-30-2001, 10:02 AM
Here is some real time information for you:
Doctors have been known to be WRONG.
A specialist told my mother that her lung problem was TB. Four years later, after all kinds of treatments and a lot of grief for our family, a better doctor declared it to be a bacterial infection. Mother is now getting the right treatment and even though she will always have some scarring in her lungs, she is getting better.
Just because someone says they are a doctor doesn't mean they are a very good doctor. Get your final diagnosis, then look for better doctors. One of the best places to start is at teaching and research hospitals where the latest/greatest medicine is being tried out. I have heard of some great strides being made with lung reduction surgery as well as partial lung transplants.
A partial lung transplant is done by taking a piece of a donor lung and patching it into the recipients after removing a bad area. It's allot less traumatic the transplanting an entire lung.
Doctors have been known to be WRONG.
A specialist told my mother that her lung problem was TB. Four years later, after all kinds of treatments and a lot of grief for our family, a better doctor declared it to be a bacterial infection. Mother is now getting the right treatment and even though she will always have some scarring in her lungs, she is getting better.
Just because someone says they are a doctor doesn't mean they are a very good doctor. Get your final diagnosis, then look for better doctors. One of the best places to start is at teaching and research hospitals where the latest/greatest medicine is being tried out. I have heard of some great strides being made with lung reduction surgery as well as partial lung transplants.
A partial lung transplant is done by taking a piece of a donor lung and patching it into the recipients after removing a bad area. It's allot less traumatic the transplanting an entire lung.
WinterAires
03-30-2001, 12:56 PM
Thank you again Robert for your reply. Although I do appreciate the information and help you are trying to offer I dont believe that every doctor I come in to contact with is a bad doctor nor a mistaken one. It would be wonderful yes to discover when I go to see my own doctor that I dont have this disease at all. Yet realistically I cannot simply assume the original physician I saw was mistaken or a quack. I hope your mother is doing well and wish you both the best of luck.
cutenbrat
03-30-2001, 05:02 PM
Sweetie the doctor might be right, but still you should get a second opinion for if they are treating you for the wrong thing you can get much worse hon-it's just a saftey percaution.
God Bless
And that way you can find out other treatment measures if there are some as well-one doctor doesn't know it all.
God Bless
And that way you can find out other treatment measures if there are some as well-one doctor doesn't know it all.
WinterAires
03-30-2001, 11:52 PM
Of course Im getting a second opinion. I'm going to my physician on the 6th of April and also to get a repeat chest x-ray. I am aware that some times mistaken diagnoses are made. I just don't believe that these doctors in the ER who went to school for several years and the radiologist who read my x-ray could all be wrong. I believe that I do have this disease and what I'm looking at now of course is treatment options. Thanks for your input!!
cutenbrat
04-02-2001, 04:38 PM
Please keep us updated.
God Bless.
God Bless.
GM3
04-29-2001, 02:39 PM
I have Interstitial Lung Disease and have been fighting it for 2 years now. My doctors believe it is due to an autoimmune disease called Scleroderma. From what I understand, there are several autoimmune diseases that can cause ILD. You might have your doctor runs some blood tests to see where your ANA is and see if you are not suffering from something that is causing the ILD.
I know the prognosis is scary. I probably read the same web sites that predict a 4-5 year survival rate for ILD. However, right now my lungs seem to have somewhat stablized with the drugs I am taking to fight the autoimmune disease and I am trying to stay optomistic even after coming close to dying last summer.
Good luck and God bless.
I know the prognosis is scary. I probably read the same web sites that predict a 4-5 year survival rate for ILD. However, right now my lungs seem to have somewhat stablized with the drugs I am taking to fight the autoimmune disease and I am trying to stay optomistic even after coming close to dying last summer.
Good luck and God bless.
jazzlady
06-25-2001, 02:37 AM
Thanks, Cutenbrat & GM3 for the encouraging words. I came across this site because I'm currently undergoing tests to confirm some type of Restrictive Lung Disease. I've not read anything encouraging elsewhere on the web, but your comments have helped to anchor me somewhat. I do have a question, though: many articles mention some ILDs being drug-induced. What type of drugs can induce these disorders? I've hardly ever taken prescription medicines, but have taken a good amount of OTC ibuprofen in years past. Thanks for any info!
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