My name is Annie Maynard, I am 30 years old, and I live in Peterborough, Ontario. I have two children Lyla (5) and Jake (2) and I have been married to my husband, Ian, for 7 years. I was diagnosed with TTP in September 2013.
My story started long before the TTP diagnosis. In September 2011, when my son was 8 weeks old I was at my sister’s house when I started to experience chest pain. I thought this was weird so I went to lie down, but I began to sweat and feel anxious. I went back out to my sister’s kitchen and her friend noticed something was wrong. I said “I think I’m having a heart attack,” we laughed and then we Googled heart attack symptoms.
My sister decided to drive to the hospital, just to be safe, she said it was probably just some heartburn, but didn’t want to take a chance. When I got in to the Emergency, they did an EKG and the triage nurse said “Whoa.” The nurses and doctors immediately started asking questions and it was chaos.
I was flown to Toronto General Hospital where a heart cath was done, but nothing was found. Three days later, I was home. Now I know what you’re asking, “this girl had TTP for 2 years?” My doctor told me my TTP didn’t have anything to with my heart attack. While they never determined what had caused it, think TTP played a role.
On January 1st, 2013, I was just coming to terms with the fact that I was just 28 years old and had had a heart attack. My husband and kids were out all day and when they came home I couldn’t talk. It may sound odd, but I didn’t really think anything of it. I honestly thought that maybe I was just mad at my husband, even though I couldn’t remember why I was mad at him. When putting my daughter to bed however, I couldn’t read her a book. When I left my daughter’s room my mom was there, she and my husband had decided that I needed to go to the hospital.
I don’t remember much about that night. I remember talking to a doctor on the computer from Toronto, and he was asking me questions that I couldn’t answer, so my husband did. Then I remember waking up in the ICU, I still could not talk. I spent 30 days in the hospital trying to remember my words; even trying to write the alphabet was hard, I had had a stroke. I had a lot of speech therapy, but I finally got my words back and was able to write my name again.
In September 2013, I got a really bad headache and started to go numb on one side of my body, particularly my hand and the side of my face. I was putting my children to bed when my face started to drop like it did during the first time I had a stroke. I didn’t want to go back to the hospital because I knew I would be in there for days! My husband came with me and once I was settled, he went back to be with the kids. My sisters and my parents came too.
They did some blood work and the doctor came in and said it was probably just a migraine causing the stroke to flare up again. The nurse came in and told the doctor to look at the blood work; my platelets were at 16. I had no idea what all this meant. I was given a bag of plasma and was sent to the stroke floor.
That night, I remember being in the same room I had been in previously with my first stroke and thinking, “here we go again.” I remember other bits and pieces of that night like getting sick to my stomach and calling my husband to tell him and falling asleep that night at 8:00 pm. I don’t remember too much else, but from what I've been told my husband and mother came the next morning and I would not wake up. The doctor was brought in again, but he too could not figure our why I wasn’t waking up and I was sent back down to the ICU. I remember waking up a few times in the ICU and hearing the familiar voices of my sisters and friends, but I would quickly fall back asleep. Thank god for that doctor, he had no idea what was going on, but took the necessary steps to get me to a hospital that might be able to diagnose me.
Again, I was flown to Toronto, this time Toronto Western Hospital, and put in the ICU. I don’t remember this, but my husband says that what felt like millions of doctors came through my room to check on me, run tests and ask him questions. It took about 24 hours before I was diagnosed with TTP!!
By the time the doctors were ready to start treatment, I had woken up. I remember freaking out as they tried to put tubes in my neck. I began feeling very claustrophobic and again, I couldn’t talk at all! I ripped the plastic off and started crying. They had to put me out in order to get the tubes in and when I woke up again I had a ventilation tube in my throat. That was pretty rough.
I had my first plasma treatment that night, starting at midnight until 4:00 in the morning. Even though I don’t remember any of it, the nurse in charge of my treatments said I groaned all night long.
The morning after I had my first plasmaphersis treatment, I was able to talk again, after the ventilator tube was removed. The doctors came in and told me that I had been diagnosed with TTP.
I had 60 plasmaphersis treatments and Rituxan. My husband has been wonderful through this entire experience and I can’t thank him enough. My parents, sisters, my uncles and friends of my parents have been there for me, either watching my kids, transporting me to Toronto and giving me places to stay. Thank you.
I’m so glad that I’m alive and get to say that!!!