I have a lung disease.

[Polliwog]

Hello everyone,

I have been off the forums for awhile now (except for lurking now and then). Last September, 2012, I went to see a pulmonologist at the UCLA Medical Center in Los Angeles, after being referred by my local pulmonologist. He diagnosed me with an interstitial lung disease but was not sure what caused it. At the time, he said it was probably 1 of 3 types and he would treat them all the same. Therefore, I opted out of an open lung biopsy, which has risks associated with it.

In September I started on 40mg of Prednisone and 2000mg of CellCept. I responded well and since have tapered off and probably won't see any significant improvement going forward. My recent CT Scan showed that no disease is present at this time, but I do have fibrosis (scarring) of the lung tissue which is irreversible. My lung function is 65%. My dr's goal is to get me into remission so that I will not get further scarring. We will be discussing long-term medication at my next visit.

The one thing that my dr said might be the antigen for my disease is that I spent time at my son's house at the beach during which he had a cockatoo. Birds are often the cause of this disease. My son gave the bird away as soon as he found out. Another possible cause is coffee bean dust. I happened to see this on the Internet while researching my condition. As it happens, my office for the last 3-4 years has been in my youngest son's building where his business is coffee roasting. Now my office is at home.

My most recent diagnosis from my dr is "chronic hypersensitivity pneumonitis."

I am wondering if any of you has had this disease or knows about it.

Thanks, Linda

[Jilly]

I have not, but I do have asthma that is problematic on occasion. So, I do not know what this is like for you, but I do send good wishes for no further advancement of the disease.

[Gardenarian]

It sounds awful. I know a couple of people who have suffered from psittacosis - is that similar to what you have?

[catherine]

A friend of mine actually suffered from a lung condition for a long time before they figured out what it was and then she was featured on CBS in a piece on it. It's called NTM (non-tuberculosis myobacteria) and it's caused by bacteria found in common places like your shower head

Here's the CBS piece on it (http://newyork.cbslocal.com/2012/09/28/is-your-shower-harmful-to-your-health/)

Good luck with the diagnosis and treatment!

[pony mom]

My mom has MAI/MAC, which is similar to TB and can be caused by birds. She hasn't been able to putter in the flowerbeds because the bird droppings can aggravate it.

Is this similar to what you have? One doctor diagnosed it as allergies for many years until she started coughing up blood. She has nodules in her lungs and has to be checked several times a year. (They also caught lung cancer very early; luckily they just removed 1/5 of one lung and she's cancer-free.)

[redfox]

Polliwog, I am so sorry to hear this. I hope that this arrow of life doesn't hurt your life spirit. Blessings, my dear.

[Tradd]

P, I'm sorry to hear this. Good thoughts your way.

[Tussiemussies]

P., very sorry to hear of your lung condition. I hope there are no more problems. There was one thing that came to my mind when I read your post and that is that in yoga there are very good lung exercises.I would look into Sivandanda Yoga. I will see if I can find the same book I have on Amazon.


Here is one of their books that go into the breathing practices:

http://www.amazon.com/The-Sivananda-Companion-Yoga-Relaxation/dp/0684870002/ref=sr_1_1?ie=UTF8&qid=1370225356&sr=8-1&keywords=Sivananda+yoga


You might also want to ask your Dr. If you could do steam inhalations with aromatherapy oil? If you explain a little bit about your condition to me I may be able to find an aromatherapy oil to help it.

Wishing you all the best!

Chris

[treehugger]

Polliwog, I am not familiar with lung diseases, but I did want to wish you well. Sounds like you are taking smart preventative measures towards further damage. Hope things start looking up for you.

Kara

[puglogic]

Polliwog, so sorry to hear about this. I wish I knew something helpful, but I really don't. Wishing for a return to perfect health for you! {{hugs}}

[Polliwog]

Thank you all for your well wishes and suggestions. Since I posted, I spent 5 days in hospital at UCLA Medical Center. It seems I contracted some sort of virus and it did a number on me because of my underlying lung condition. Anyway, I now am on oxygen 24/7 until I see my Dr on July 1st. What I learned in the hospital is that lung diseases are very difficult to diagnose. I saw at least 10 doctors while I was there (they work in teams) and there were some differences of opinion as to a diagnosis. I am very fatigued which is discouraging; but I will press on....

Linda

[Tussiemussies]

Sorry Linda that you have gone through so much and that it is making you tired out. I guess the Dr.s didn't come to an agreement yet on the diagnosis. Too bad you had to get a virus on top of your lung issues. Do hope that you feel much better....chris

[Lainey]

ouch, Linda, what an ordeal. But I like your attitude about just keeping moving forward.

[JaneV2.0]

What a difficult situation; I'm sending non-denominational best wishes for your steady recovery.

Apparently, diagnosis is a lost art. I have a friend who's gone months without getting one from a variety of practitioners (with pretty straightforward symptoms, IMO). It seems that unless you show up with something simple--like a gunshot wound--it's just a bafflement.

[Polliwog]

My pulmonologist at UCLA has narrowed his diagnosis to Chronic Hypersensitivity Pneumonitis. It's his best guess as to the type of interstitial lung disease that I have; and all agree that it is autoimmune. Interestingly enough, my sister has ITP which is autoimmune; her son has Addison's disease, again autoimmune; and his daughter has Vertiligo (autoimmune). A direct blood line through us.

I will let you know if I hear anything more interesting. Thanks again all for your concerns and comments.

Linda

[Float On]

So glad you stopped in to post and very sorry about your lung condition. I know nothing about lung conditions but will keep you in prayer and good thoughts.

[JaneV2.0]

... Interestingly enough, my sister has ITP which is autoimmune; her son has Addison's disease, again autoimmune; and his daughter has Vertiligo (autoimmune). A direct blood line through us. ...
Linda

Coincidentally, I think my friend's problem is also one of the auto-immune diseases, with different auto-immune disorders on both sides of their family.