Living with Sarcoidosis

I was first diagnosed with the disease in 1991. I was put on Predisone [prednisone] for several years (low dose) and later was taken off of it.. However I had stomach problems and had abdominal x-rays and scans done, and was told they thought I had Lymphoma of the Stomach, but after going to specialists in B’ham Ala [Birmingham, Alabama], it was decided that my sarcoidosis had flared up again. I was put back on presidione again and I got better.. But thenon Christmas Day 2006, I shut down and was rushed to the hospital, and almost died and was admitted to neuro ICU, where I remained intubated for 5 days, I had developed bilateral lower lobe pneumonia which with the Sarcoid, almost got me again. I was given massive amounts of antibiotics, and after a few more days going to a step down unit was released.

But now 8 months later I am having difficulty breathing, and the breathing is worse and the rash that I experience is back. I have an appt. this week with the pulomary Dr. [pulmonologist] and I also have to be under the care of an Infectious Disease Dr.. due to the fact that the presisone has caused my anti-bodies to be at a dangerous level and I have to have IV treatment to try to bring my Ig,Ib,&Ia levels back to a normal range.

To me Sarcidosis is a horrible disease, the medication has made me a diabetic, and I now also have Hypertension I can not say any good thing about the disease.. I read that more African -American people have the disease worse, well I am a causcian [Caucasian] male..The story I have shared with you is about my husband of 47 years. It was horrible to stand at Christmas over my husband and have the Doctors tell you he is not going to make it. Chritmas should be a happy time….I am afraid when I hear him trying to get a deep breathe, and when the muscles in his legs give way due to being so ill a Christmas.. For all of you that have the diseas or have a loved one that has it. it is no walk in the park……