I was diagnosed in late January 2014, following an intense bout of norovirus. I showed my doctor what I thought were broken blood vessels along my collarbone from being so ill. She sent me for blood work for three weeks in a row because my platelets were low and they kept declining to about 10,000.
When I got a call with my results, I was told to stay close to a hospital and to wait for a call back about a possible blood transfusion. My doctor was consulting with a hematologist who would provide her with instructions for me. I didn't end up needing the transfusion, but I did go on 60mg of prednisone and was given an appointment date with the hematologist. I went to the hospital for bloodwork (lots of it) and an ultrasound of my abdomen prior to my first appointment with the hematologist.
When I saw him, he told me I have ITP but what he didn't know was if it was temporary due to my having the norovirus or if it was chronic. He slowly weaned me off prednisone over five to six months because he thought if it was just the virus then my platelets would stay normal like when I was on prednisone. I was off prednisone for maybe a month when my platelets crashed to 13,000. I was told to start taking 30mg of the steroid and my scheduled hematology appointment was bumped up to early September (a week and a half after going back on prednisone).
At that appointment, my hematologist told me they would be removing my spleen, but first I would require a bone marrow biopsy and aspiration plus a CT Scan as the ultrasound showed I had a normal-looking spleen and he wanted to rule out blood cancers. On November 17, 2014, my spleen was removed laparoscopically. I was told it was actually three times the size of my fist and the reason it looked normal in images was that it was growing towards my spine. The pathology on my spleen came back with all the characteristics of ITP according to my hematologist, and I was lucky it did not burst. I haven't been on prednisone since just after my surgery (my platelets at the time of surgery were 48,000 and my hematologist wanted me to slowly wean off to see if I would rebound in numbers after surgery).
It's been almost 9 years and I have been lucky to be in remission since the splenectomy. I still consider myself an ITP warrior as I know there is the possibility of developing an accessory spleen and my platelets can still potentially crash again. I just don't think too much about it as I try to enjoy how lucky I have been post-splenectomy with my platelet count. And though I'm not completely out of the woods yet, I am optimistic.