Has anyone heard of pneumonitis, which is very similar to COPD?
I am newly diagnosed with hypersensitivity chronic pneumonitis, not to be confused with pneumonia. The symptoms are very similar to COPD--shortness of breath, cough, fatigue, and so on. The cause is often not found. Fifty percent of the time it is never found. The other cases point to chemicals, feathers, dog dander, etc.
The alveoli are attacked by the immune system and fibroids can develop. I am on anti-rejection pills to treat the attackers. I have been told it will take months and months of treatment to reach improvement, which may then plateau. Also, I am on oxygen 24/7 on 2-5 liters per minutes. It's a life saver! The paramedics gave it to me right away because I was at 62 % in the pulse oximeter. I was in the hospital for a week. The standard bronchodilators and inhalers only had little effect... I guess they are more for COPD.
I would like to bring this up topic to see if there are others willing to share stories and information on their diseases. We can all learn from each other!
Yes and no I have heard of this. After reading your diag. I looked it up of course and wow, "Farmers Lung" was there! Have heard of that after growing up in a rural farming area in Michigan, just did not know it had another name. Thanks for the new info.
My father suffered for 30yrs with Cryptogenic organizing pneumonia (COP) once known as bronchiolitis obliterans organizing pneumonia (BOOP)
My eldest sister was diag about 3 yrs ago with Community-acquired pneumonia (CAP)
Myself, well that is a little more. At 17yrs it was asthma, at 28yr while pregnant with my 2nd child I acquired Coccidioidomycosis (Valley Fever) thus leaving granules in my lungs and a secondary possible attack if the circumstances ever became about. Well needless to say I came down with Rheumatoid Arthritis (don't let that name fool you) 20+ yrs ago. Treatments for that started and came to halt for Biological Meds are a no no if you have had Coccidioidomycosis. Then we speed up to 15months ago with a 5 day scary stay in the hospital only to find out that the RA took more of my lungs away. I not only have the granules mentioned above, but nodules and a bunch of misc collasped alveoli through out both lungs. Since then they just found more collasping in my upper right lung (near the shoulder) that happened with a belt of pneumonia in Sept of this year. The Pulmonologist called my lung situtation RA LUNG with a twist, yes we laughed together about the "twist". I am at final stage 4 lung failure, on 2 liter of 02 at night only so far and still plugging at living the best I can. Hoping to make it to my 60th birthday in June with no more problems occurring. The road at times has been rough, the trick I feel is staying as healthy as possible, keeping up to date and accurate information on your medical issues, informing family and friends of what's up. Most of all, be kind to yourself physically and mentally.
Thanks again for sharing, would love to learn more as your treatments and recovery continue. Doris
Hi again, dltld (Doris), and thank you for candidly sharing your medical history and present circumstances here with the community. You certainly have had a lot on your 'medical plate'. We are all pulling for you, especially with a big birthday coming up.
If there is anything we can do to assist you, please let me or any other moderator / team member know. You are always welcome here in our online community.
Warm regards,
Leon (site moderator COPD.net)
Hi toplapi, and welcome! I see you are a relatively new member having joined just a few days ago. We are glad to see you engaging already with the community through this, your second post!
I see that our fellow community member,(Doris), has already posted a comment in reply to your inquiry (thanks, Doris!). I also have something to contribute.
Over the many years taking care of patients in the hospital, I have treated folks with a diagnosis of pneumonitis. Treatment can vary and be dependent on the etiology of each individual case encountered.
I thought the community might gain some additional insight, about this particular disease, from this material published by the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/17898-hypersensitivity-pneumonitis. I do hope the information is helpful for everyone who is interested.
We appreciate your own candor sharing your personal experience managing this disease. I will look forward to more conversation with you going forward.
Wishing you well,
Leon (site moderator COPD.net)Hi again, toplapi, and thanks for providing the conclusion to your frightening event. I am so glad to read about the happier ending!! You make good points in each of your recent updated entries - it is good to be grateful, every day! As well, as you become more experienced managing this disease, you will certainly be able to recommit to going forward.
Naturally, we are all here pulling for you!
Enjoy the weekend!
Leon (site moderator COPD.net)well what an experience for you! At least you were are the right place when it happened and all is good now. Anxiety/panic attacks are no fun at all. Glad to read that you are ready to move forward and maintain your health as it maybe for now. Go get em!
Hi Doris,
Yes, “Farmers Lung” is another term for pneumonitis. Unfortunately for me, I can’t point to a clear cause of my disease. Maybe later in my treatment something will arise to explain how I came down with this disease.
But I do know that I have had a dry cough going back almost 20 years. In 2008 I went to a pulmonary doctor and had a CT scan and other tests. They were inconclusive and I was told to keep a eye on my health.
Well, in 2000 I came down with acute promyelocytic leukemia and nearly died due to blood being unable to carry oxygen— the alveoli were packed with tons of immature red blood cells. So there was some damage and scarring done.
While I was cured of the leukemia (thank God!) it turns out I would have regular dry coughing. Sometimes it was worse than other times. Two or three years after the 2008 exam I decided to see another doctor. Asthma was the conclusion. That brings us up to January 2022 when I saw a pulmonary specialist. He was puzzled about the scarring and gave me the PF tests. The results were inconclusive again and the doctor thought it was asthma, maybe with undetected Covid-19 that left scarring. I did not have Covid so I went to two other doctors and finally am with my fourth one. He’s the best I have had.
I’ll end this now and pick up in my next post with the more of my treatment. DennisI was diagnosed with HP just about September 2022, through a CT scan. At the time, I was vaping and had to stop immediately, of course. I was treated with nebs and steroids and I got better pretty quickly, but of course, it's always there just waiting, I'm afraid. I have an appointment next week, so hope for some follow up info. Best wishes! Hello, and nice to meet another CHP patient! I too started with prednisone which made the symptoms a lot less. I was diagnosed in August but shuffled around between doctors until December when I finally found a doctor would specialized in ILD.
Do you have shortness of breath? I fight it all the time but I think l’ m getting better at managing it. A big help has been a pulmonary rehab program that I attend. You learn all about breathing properly and exercising regularly to tone up breathing muscles in the chest. I enjoy the rehab although it’s exhausting at times. I heartily recommend it.
I am also on Cellcept medicine that is anti-rejection treatment, since my immune system is attacking itself. The goal is to kill off the antigens attacking weakened tissue. There’s no cure but this sounds like a great alternative. All the best to you!i do have shortness of breath and am on 4L O2 24/7. I will discuss more with her about my HP on Tuesday. My last follow up I had Covid so had to do online and treat just that. It's hard to say if my shortness of breath is from COPD, HP, or PAH. I have them all. My doctor and I want pulmonary rehab but the closest place is an hour away so haven't started that. Stay strong!
