My story with ITP begins about 2 weeks after one of the happiest days of my life, the birth of my son. His home birth was empowering, exhilarating and overall an amazing experience. This is where it gets a bit personal.
All mothers bleed after giving birth for 4-6 weeks. All women are different and experience different levels of bleeding. There are a lot of "normals". About two weeks after giving birth to my son my bleeding increased big time. I phoned my midwife and we both thought I was probably doing too much around the house too soon but to be on the safe side she ordered some blood work.
Later that night before I could even get the results from my labs back I was bleeding even more. I knew something was not right. I was hemorrhaging. My partner and I phoned an ambulance and off to the hospital we went. Me and my little newborn son.
At the hospital I found out my platelets were at 2000 and I was given a blood transfusion and a pelvic exam. Everything about my labour and delivery was normal! Why am I hemorrhaging two weeks after giving birth? The gynecologist on call thought maybe I had leukemia.
The hospital in the area we live in was not staffed or equipped to handle my situation. I was taken by helicopter to nearest hospital that had a hematologist that could help me. The next morning I was diagnosed with ITP and started a steroid called dexamethasone. That did nothing. Next steroid up was prednisone. My hematologist explained the side effects to me and not really taking her seriously I began a 5 month downward spiral. Increased appetite is a polite way to convey all the eating I did! Wow! I had never eaten so much even while being pregnant. My mood swings were also on another level. Never again will I ever down play the side effects of a drug. That was an extremely difficult time for my family. I was not myself and I was unbearable to be around.
Unfortunately, the prednisone also did not help my platelets. My hematologist actually even questioned if I was taking the pills because she was shocked that it did nothing for me. While trying the dexamethasone and prednisone I was getting IVIG every 10 days which is an IV transfusion that made my platelet count rise. I describe it as charging the battery. IVIG gets to my platelet count to a normal level in the high 200,000s but in about 10-14 days’ time I am crashing again and I'm crashing quickly!
Another treatment I've tried is called rituximab. This is an IV infusion used in chemotherapy treatments. Rituximab did not put me into remission but it did lengthen the time I could safely go between IVIG infusions. So currently I am getting IVIG every 2 weeks at my local hospital and hoping to begin an immune suppressing drug called azathioprine when my iron is back to a normal level.
It has been almost 1 year since being diagnosed and I am focusing on living my best life for my children. I am more determined now than ever before to take care of my body in ways that I do have control over instead of draining my precious energy questioning why me.
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