Donna White

Hi My name is Donna White and I was diagnosed with Pulmonary Fibrosis in September 2009 during a six day hospital stay. The first time I heard "scarring of the lungs" was while living in California in appoximately 2004. It was during this year I was diagnosed with Pneumonia for the first time. A chest xray a year or so later showed some scarring on my lung and the nurse at that time told me it was a result perhaps of the Pnuemonia and it was quite common. Though I did some research and had my concerns I tried not to give it too much thought.

One thing as I look backover my adult years was I always had a dry cough, clearing my throat regularly, and when I got sick my cough was very bad. Even as a child my cough was terribly bad when I got sick! Some where in the years of 1996-1998 I was diagnosed with COPD and Asthma. I was treated for Asthma and COPD (Chronic Obstructive Pulmonary Disease) from that time until 2009 with inhalers, antibiotics and nebulizer treatments. When I was told the Pulmonary Function Tests showed my problems were more restrictive than obstructive COPD and Asthma were taken off my list of things I was diagnosed with. Also the inhalers were taken away from me. (A point I would like to make is my mother was also diagnosed with COPD and Asthma and died at 58 years old around thirteen years ago. My Dr's heavily question if it was that or Pulmonary Fibrosis. Which would mean this could be familial).

As I looked back I could see signs of shortness of breath taking place more and more which made no sense to me since I was walking five miles a day for a steady amount of time. My energy level was dropping and I became exhausted fairly quickly. To do housework was a BIG chore and I chalked it up as being overweight and getting older. When I continued to show up in ER's with trouble breathing and my sats dropping in the 80's I knew something more was happening. It was at this point that I woke one morning unable to get out of bed. My entire body ached from head to toe. I felt like I could not get the air I needed and it seemed I could not get air between the coughing. Each breath was more like a cough. This began the six day hospital stay I mentioned in Sept. 2009. This also began many appointments being set up with specialists and then told I had an Interstitial Lung Disease called Pulmonary Fibrosis.

Upon researching I read I had 3-5 years to live with this devastating disease. But I soon learned from my online support group that there is no time stamped saying when it will be my time! I found many do live way past this 3-5 year amount of time.

Pulmonary Fibrosis is defintiely a terminal illness because there is no cure for it. But the amount of time living with it varies from person to person although many are dying from this rapidly growing disease. That is why education, advocacy and research of Pulmonary Fibrosis is so very crucial!

More than likely my Pulmonary Fibrosis is linked to or comes from the Rhuematoid Arthritis I was diagnosed with after the diagnosis of Pulmonary Fibrosis. My life has changed dramatically. Once someone very active I am now for the most part housebound. Since September 2009 I have been on oxygen 24/7. I also use a BiPap for Severe Sleep Apnea. Prednisone was for a time my best friend helping the inflammation and then it began hurting me more than it was helping me, resulting in Diabetes2. I have taken injections of Humira for my RA. I am presently being changed to Embrel since the Humira is not sufficient and as I am being tapered off the Prednisone by my Doctors request. I have recently been told it is believed that I have NSIP (Nonspecific interstitial pneumonia -cellular and fibrosing).

Since September 2009 I would describe my life as Turbulent. I have seen many Doctors and have had many tests taken. I have also met some of the most wonderful people who share a common bond with me of having Pulmonary Fibrosis or someone who has been touched by this disease of loosing someone they love. My heart goes out to us all. Please help us to do more to reach others and find a much needed cure for Pulmonary Fibrosis. I assure you it will be greatly appreciated!

I would like to say Thank you to God for his strength! I would like to give a special thank you to my Billie who is my Caregiver and my love. Also My Family for their ongoing support and love and the encouragement of friends and the support groups I attend online.