[Dan]

I was first diagnosed with PF in June of last year.  By September I’d had a battery of diagnostic tests including an open lung biopsy, resulting in a narrowing of my diagnosis to chronic hypersensitivity pnumonitus (HP) as a cause for my HP.  Further test of a variety of antigens to try and determine the source of my HP was inconclusive, making my HP of unknown origin.  The PF can’t be reversed, but the HP can be slowed or stopped IF we can find and eliminate whatever it is that is causing the inflammation in my lungs.  The hunt good on.

In the mean time I went on a burst and taper off Prednisone while titrating up on Mycophenolate (1000MG 2x daily).  Since then (around 6 months now) my inflammation and consequently my PF have not gotten any worse.  Which is great news given the alternative.

I’ve not experienced any noticable side effects from the Mycophenolate.  My Dr also put me on sulfameth/trimeth to help me keep infections at bay.  I’ve not had any problem with that.

I too am working on getting some weight off in order to get my body fat percentage under 30% to qualify for transplant if the time comes.

I use supplemental O2 when exercising to keep my saturation above 86 and I start rehab next week.

I’ve had Pulmonary function tests about every 12 weeks since diagnosis.  The drop in function was observable until I started the Mycophenolate.  Since then it’s leveled off.  We believe it’s helping.

I still get out of breath.  I still cough.  I still get tired easily.  These things won’t change unless a way to reverse the lung damage done by PF scaring is found.

Until then… I’ll stick with the Mycophenolate (Cellcept) as long as I can and just adjust to my new normal.