My Personal Experience with Lung Disease

Hello everyone out there with any kind of lung disease.  

I started this blog to have someone to talk to about this condition.  Have never known anyone with a lung condition until I had it.  Really do not know how or why I have this.  Was not a smoker, didnt grow up around it,  havent ever had any friends that smoke,  don't live in high altitude, or ever been around construction.  So I dont fit the profile to have this disease called HP - Hypersinsitivity pneumonitis (sp!).  However, in talking to several people with this same condition, it seems common to not know what causes a person to have lung disease.  Aparently there is much to be researched. 

I would like to talk to poeple that have lung disease,  to see how they feel, what activities they are able to do, what they have found to help this condition, what their doctors have said, or if they just want to vent!

My history:
For well over ten years,  I had a smokers cough that doctors said was asthma, sinitis, acid reflux.  In reality - it was HP.  God only knows how many different medications I took in this amount of time.  It took a great doctor, and LOTS of tests to find the correct diagnosis and actually DO something about it.  I was told that if I had been diagnosed the first day of the first symptom, it would still be the same, today.  That could be true, but I still would have liked to have known so I could have done some things differently.  Possibly,  it would have progressed slower.   80% of my right lung is fibrosis and scar tissue and 20% of my left lung.  My doctor said, from the scans, it looks like it has been the same for several years.  The good news is, it hasn't progressed.  Hopefully it won't. 

My diagnoses:
When I was diagnosed in February of 2010, I was put on oxygen 24/7.  This went on for about 6 weeks.  I purchased my own pulse oximeter and kept track of my oxygenation.  It seemed I could actually be off of the oxy as long as I didnt do to much physically.  However, I still had to have it at night when I slept and when I exercised.  At present - I only use the oxygen when I sleep and exercise.  I really do not even need it at night any longer but I do use it at 1liter.  I monitor with the pulsox several times a day - but I know what I can,  and cannot do wihtout the oxygen.  

WHAT I HAVE FOUND TO HELP!
In searching the internet for something to help I stumbeled on a product that actually does help!  Incredible enzymes that actually stopped the cough completely, no more constant thoat clearing, breathing is better, and I keep lowering my oxygen needs.  I can walk further while staying in the 90's on the pulsox.  I used to walk to the kitchen from my office (approx 40 ft), without oxygen my numbers would go down to low 80's high 70's.  No longer!  Included at the bottom is a link to the web site where anyone can order it.  If you would like to know more, just call me. 

Originally these particular enzymes we used to help people that were on blood thinning medicine or with cholesterol problems. In the process of researching the product, they foundout it dissolves and removes fibroses and scar tissue.  I have a friend that was in the same situation I was in.  He was on the enzymes for 10 months - had a new scan, the doctor told him all the fibroses and scar tissue was gone.  The doctor gave him 21/2 years to live with the original diagnoses!

I have only been on the enzymes for 6 months, and can definately see an improvement, but I am not done yet.  Will have another scan in May.  Will update everyone at that time.

Exercise:
Before and since my diagnosis,  exercise has been an important part of my life.  I do believe that it increases oxygenation in my lungs (though there is no medical proof) - it keeps them moving in and out, and, hopefully, will KEEP them moving in and out!  Weather it helps my lungs or not I do not know for sure, but, I do know that it helps my heart, muscles, and joints.  So for these reasons I will continue to exercise.  

Research is on-going in my life.  As I find more information it will be added to my blog for anyone that is interrested.  Please feel free to e-mail any information you find if you would like it added to this blog.  My e-mail address is - JD32@charter.net.

Looking forward to talking to many new people and hopefully we will feel a little less isolated with our challenge.   Most important, we will be able to help each other.
Linda DeVelbiss
209-599-2332