I think it is wonderful to have the regular support group sessions. I look forward each time to hearing about new developments in the fight against TTP and listening to patients brave enough to stand up in front of the group and share their stories. Although I would not wish TTP on anyone it has been comforting to know that others have faced and overcome the same challenges I have.
I was first diagnosed with TTP in August of 2005. I spent a few weeks in the hospital undergoing plasmapheresis and a month or two as an outpatient before slipping back into normal life. Despite being asked "How are you feeling?" at least twice a day for months afterwards, I stayed pretty positive and considered the ordeal over for good.
Over the next five years I relapsed three times and ending each successive relapse required a new level of treatment: prednisone, rituximab, and finally the removal of my spleen. While I had a measure of respect for how serious TTP can be, the fact that you can still die from it had not quite sunk in until my third relapse. After being shifted from inpatient to outpatient, I was traveling to either Princess Margaret Hospital or Toronto General Hospital almost every morning for plasmapheresis only to watch my platelet count drop back down by the next visit.
My morale took a huge hit during that period; even though I was walking around and acting quite normal I was not getting better. I remember my mother and I telling each other that everything was going to be ok, but I don't think either of us actually believed it. I knew that without the treatments I would eventually die and I wondered if there was a point where the hospital would decide that I had wasted enough blood products and just let me go. I was very fortunate that the splenectomy put me back on the road to recovery.
The first Toronto Support Group & Info Session was held not long after my surgery. I almost didn't attend as my midsection was still sore and the central line required for plasma exchange was still embedded in my chest, but I was glad that I went. Meeting other patients face to face, listening to survival stories, and seeing everybody smiling gave me hope when I really needed it. I have attended every meeting since then.