My name is Sherrie Oswald. I am married with 3 teenaged children and I live in Kingston, Queensland, Australia. I was 32 when I was diagnosed with TTP. I never knew what TTP was nor had I heard of it before it changed my life.
I now work in Administration part time, but at the time of my first episode, I was working as a Teacher’s Aide.
I will never forget my first symptoms of TTP. I was sitting at work and I just got a mind splitting headache. I have never suffered with headaches and the pain of this was bad, I mean I just wanted someone to knock me out to end the pain. I went home and locked myself in a dark room.
The next few days, I stayed home on the couch because I thought I was coming down with the flu, but then I started getting paralyzation down one side when I woke up. I was sleeping all the time, and not eating, but my family was making sure that I kept fluids up. My head continued to pound this entire time.
My husband decided to take me to the local hospital when I started getting the paralyzation and they told me that I had a migraine so they gave me some painkillers and sent me home. By this time, I knew that there was something seriously wrong with me. The next day, we visited the ER for them do a MRI, but still they said it was just a migraine and sent me home.
On the third day, I went to see my GP and told him that this was not a “migraine”, thankfully he ordered a blood test. This is when things start getting fuzzy for me, so some is what I remember and other bits are what my husband told me that happened.
It was 5:30pm on June 25th, 2010 when I got a call on my mobile. It was a doctor from the pathology, he told me not to panic (hard when some strange doctor is calling you directly), but I needed to get to an emergency room immediately and once there have them call him directly. That is when I went down the rabbit hole, so to speak. As soon as I arrived, they took more blood and stared asking weird questions, like did I have HIV or any other kind of STI and just kept saying that they could not explain why I had low platelets and hemoglobins (like I knew what that was). The last thing I remember for sure was being told that I had blood cancer and I was to be transferred to a larger hospital that could treat me. I was then loaded into an ambulance (they would not let my husband come with me). I woke two days later and I have been told that in that 2 days I was awake and having conversations, but I have no memory of it.
When you were diagnosed with TTP, how did you feel both physically and emotionally?
To answer this question, when I was first told apparently I told the doctors that they were not cutting me open (refering to the VIR and cannular). The doctor said “fine you will die” and I said “okay, you win” (and yes that sounds like something I would say). I remember being scared not so much for myself, but for my children and husband, I wanted to be able to be there for them.
I recieved plasma exchange every day for 7 ½ weeks with prednisone. After the 3rd or 4th plasma exchange, I felt “normal” and wanted to go home. They slowly reduced the prednisone until I hit 3 months in remission, when I relapsed. I was then offered rituximab (Mabthera). I was given 4 infusions over four weeks followed by close monitoring, then a reduction again of the prednisone.
The Haematologists that cared for me were, and still are, excellent doctors. They were honest and straight forward with us, and did everything they could to make sure I was at ease and understood what was going on.
I owe my life to my GP. If he had not ordered that blood test, I have been told that I may not have made it though that night given I had a platelet count of 9 and haemoglobin of 5. I do not hold any bad will to the staff at the local ER that sent me home with a misdiagnosis because I now know that TTP is so rare. To this day, my doctors keep a close eye on me and are always interested in my remission.
I have always worried about the long-term damage that TTP has done to my husband and children, but also grateful for such supportive friends and family. My children witnessed a couple of my paralyzation episodes, but luckily they were whisked away from the stress of the situation by my in-laws. It was my in-laws who also took my children in for 8 weeks while I was in hospital. I spoke with them every day and they were well taken care of, but now when I get sick with every day illness I can see the stress/fear they have that the TTP might be returning. My husband is the same, although he tries to hide it. He was my rock through the whole thing. He stayed by my bedside until he was sure I was back to myself. Even now, almost 5 years later, he comes to every hospital check-up. He watches over me in a way that is hard to put into words, but it is more than just the way a husband watches over his wife. My friends were such a huge support too. Not just to me, but also to my husband, children and each other at times.
I still live with the after effects of TTP; I tire easily, and I seem to get sick more often than pre-TTP, but I do tend to push my limits. I have also been told I have PTSD, which has had more of an impact on my life emotionally then the TTP diagnosis. I have come to terms with my experience and I am not let the fear of TTP returning control my day-to-day life. TTP has shown me not to procrastinate! I have quit smoking (that is a good thing without TTP) and I follow my dreams. I try not to let it hold me back.
I am excited about my future and I am set to follow the dreams that I put off for too long.