Diana

[andrew]

**Diana's story - relocated from the original site by Andrew **

My name is Diana. I am 59 years old, and I live in Eastern Pennsylvania.

August of 2005 I went from being relatively healthy and very busy with a career, volunteer jobs, and family to very ill. I had almost no warning. I was at my desk when I became sick (high fever, chills, sore leg, more). Within 2 days I had red urine. I was hospitalized, and started on dialysis among other things. A kidney biopsy steered the pathologists away from vasculitis (although we now know that should have been my diagnosis) to post infectious glomerulonephritis. I did have a leg infection at the time. I was told I had one month to save my kidney, or go on the transplant list. I was lucky, and did save my kidney and stop dialysis. Function was not perfect, but was ok. I was on disability while I recovered and was coming off the cytoxin and prednisone. I returned to work at the end of November, just as the steroids were reduced to single digits. I began to get very ill again-night sweats, terrible cough, fatigue, confusion. Finally my eyes swelled shut. Unfortunately the original eye doctor treated the problem as an eye problem. Later, after 3 weeks of becoming sicker and sicker and feeling I was dying, I went to a Philadelphia eye institute. They knew this was something systemic and suspected Wegener's. I was put in the hospital, and my kidney doctor, also suspecting Wegener's, called in a pulmonary doctor and rheumatologist. After tests and discussions I was correctly diagnosed with Wegener's. I was put back on cytoxin, steroids, bactrim, and more. That was late January. I have been out of work, with the exception of the few weeks, for almost two years. My kidneys are hanging in, my lungs are clear, my eyes are clear. I have gained so much fluid from the prednisone that I am having multiple problems associated with that. Tomorrow I start on a diuretic and am coming down on the prednisone. I feel weak, have shortness of breath and energy problems. I live alone, but my 29 year old son lives two buildings away and my daughter and friends take me to many appointments. I have aranesp shots every 3 weeks, did limited physical therapy, see my rheumalologist monthly, my nephrologist every six weeks, and 4 other doctors every three to six months. I am currently using a wheelchair on rare occasions and a cane daily.

You have all been there on your own journeys, so you know this is a very abbreviated version of a long hard road-more hospitalizations, and issues on many levels.

I am in remission at last , and off cytoxin. I am still on prednisone, but am down to 10 mg. I also take bactrim.

I have a second illness, Milroy's, which affects my legs. Fluid in my legs from Milroy's and prednisone are on-going issues. Also low hemoglobin (I have had transfusions twice).

I am basically an optimist. I feel very lucky in the doctors caring for me now. I am truly blessed with supportive family and friends. Still, it is not a "fun" illness. I cannot imagine working at this point, feeling the way I do. I am on SSD and my company's long term disability. Having your life turned upside down is not easy. We all need to feel useful, so I try to still find ways to be of use.

I wish everyone the best,

Diana