It took over a year to discover my diagnosis, after a 10 day stay in the hospital, and multiple tests, an oncologist was called in on my case because I had a “mass” in my abdomen/pelvis and I had multiple enlarged lymph nodes throughout my abdomen and pelvis.
It took until September of 2013 when I underwent a 4 1/2 hour surgery to remove the “large mass” and was finally diagnosed with CD.
It was a long hard road to diagnosis and a long hard road to treatments. However, I look at this journey as making me a much stronger person!!
Since, 2013, I have undergone multiple chemotherapy treatments, immunotherapy treatments, more surgeries, more treatments and they continue today. I struggle with symptoms and I now have lifelong, debilitating conditions associated with the Castleman Disease.
I went from a fairly healthy 43-year-old to a very sick person. It changed my life completely, but I am better for it.
Fortunately, in 2014/2015 I was able to connect with Dr. David Fajgenbaum and the CDCN to get more insight and help.
I have been to multiple large medical centers and specialists for help.
Fortunately, I am on medication now that seems, so far, to be helping me to be able to at least live my life and enjoy my family. I just take everything hour by hour, day by day, week by week. Finding a new normal is what you do with a diagnosis of Castleman Disease.
Hopefully, through my participation in the CDCN’s ACCELERATE, where I am able to donate, blood samples, tissue samples, and supply medical records and surveys of symptoms, treatments, etc. I am able to help further research and hopefully help others who are being diagnosed with CD.