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Hello Friends & Family and possible New Friends,
As most of you know I have a disease called Pulmonary Fibrosis. http://www.pulmonaryfibrosis.org/ipf. Pulmonary Fibrosis has no known cause, or treatment and is progressive. I was diagnosed with Pulmonary Fibrosis in February 2009. I was advised to use Oxygen at night and upon exersion if needed. I was to set the Oxygen level at 2 liters per minutes. Life went along basically unchanged.
In December 2009 I was diagnosed with Stage 3B inoperable lung cancer. Life as I new it changed drastically. I am happy to report that after intensive treatment my lung cancer is in remission. 5 months and 9 days from diagnosis to remission. Truly a miracle and I am grateful!!!! However at this point I do not think Lung Cancer is the worst thing to happen to me. IPF is!!
In June 2010 I got some kind of infection in my lungs and spent a couple of days in the hospital. My Pulmonary Fibrosis has been on the march since then and is progressing rapidly. This brings those who did not have the opportunity to follow my caringbridge cancel blog up to date. http://www.caringbridge.org/visit/aprilboggs. Fast forward to 10/27/2010 and my appointment with the lung doc and my lung function test.
At my visit yesterday it was determined that I have lost about 30% of my ability to move air since May. (Now this is about 15% between May and a visit that I had in August and 15% since my August visit. I had been struggling to breathe for at least a couple of months even just trying to walk across the room with oxygen and I was anxious for this appointment. The upshot is I am now on 2 liters per minute of oxygen resting and sleeping and 4 liters per minute when I am ambulatory. I will have a new Oxygen supplier tomorrow and I will be using Liquid Oxygen. Liquid Oxygen is much more portable and will last longer when I am away from home. My current I-fill tanks would only last about 1/2 hour at this level.
It is hard to live with a disease that you know is literally killing you, you just don't know when. A caption from another PF person. Whats so different, one could go out tomorrow and get hit by a bus. True enough, but the difference with having PF is that "We have looked over our shoulder and we see the bus coming!"
Now it is true that my Pulmonary Fibrosis is currently progressing. It is also true that it could just go back into a holding pattern (I vote for this option right now please) and just stay at this level and any given amount of time, or it can progress at a faster level. All we can do is wait and see.
I decided to start this blog for 2 reasons. One it does not belong in the cancer blog and two, so many people care and want to know what is going on with me that this is the easiest way to keep everyone informed. Actually, I guess 3 reasons the third being that there is so little information out there, maybe my experience will help someone else along the way.
I plan to post about once per week or maybe more if I have something to share. Please feel free to leave comments and thoughts.
