Thrombotic Thrombocytopenic Purpura (TTP)
Updated: Nov 7, 2020
Thrombotic thrombocytopenic purpura (TTP) is a rare blood disorder. In TTP, blood clots form in small blood vessels throughout the body. The clots can limit or block the flow of oxygen-rich blood to the body's organs, such as the brain, kidneys, and heart. As a result, serious health problems can develop.
Living on a farm and having been diagnosed with environmental sensitivities a few years before the TTP diagnoses, I didn't think much about what was happening to me. Every year, around Spring time, I get all the symptoms that TTP produced so it wasn't unusual for me to feel lifeless and have fever. I thought I was having a really bad year with allergies and had to tough it out. Unfortunately, that was not the case. Soon after I started feeling like I do every Spring, new symptoms began to surface. My body began to shake as if I was having a seizure. The fever reading kept going up, confusion was really bad and I was vomiting for no apparent reason. What motivated me to go to the doctor to check for something else was vanity, no really it was the fact that when I did manage to eat something, my stomach would swell up for hours. I looked like I was seven months pregnant after meals.
So, with my husband urging me to go see the doctor, and my clothes not fitting me after each meal, I finally did. The doctor sent me to get blood work done to test for gluten intolerance. A day later he called and asked to see me right away, saying my blood work was off the charts. Normal platelet range is between 150,000-450,000, mine were at 2,000. White blood cell count was off the charts.
At first GP thought it might be leukemia, but he wasn't sure about the rest of the numbers adding up to leukeumia. He sends me for more blood work. Hours later I'm told to head to the emergency room of our local hospital, that GP has called ahead on my behalf and they'll be expecting me.
Still, I didn't feel all that bad, just really tired and confused. Instead of heading to the emergency room like the doctor suggested, I went home instead to shower and get ready to visit the hospital. Today, I don't remember doing that, I thought I headed right for the hospital, yet I didn't.
While I was getting ready to leave for the hospital, it became apparent to me that something was terribly wrong. My body looked like I had been severely beaten in a brawl. I had bruises all over my back, arms and legs, the purpura part of TTP. It was not a pretty sight.
I'm told I was in and out of a coma after my arrival. I had multiple mini strokes prior to seeing my GP and several strokes during the plasma exchange. The plasmapheresis (plasma exchange) lasted nine days. In total, I was hospitalised for almost three weeks.
Upon my discharge from VGH, I was prescribed steroids, a common treatment for TTP. Oh my, I have never walked or accomplished so much in one day. I couldn't sleep, eat, or concentrate. Steroids made my skin break out, my body swell up, and I had endless amounts of energy. They were awful.
It's been a long period of recovery for me. Multiple problems surfaced because of TTP. My brain was, and still is, a mess. I have bouts of total memory loss, can't do simple things like turn a door knob or put clothes on. TTP gave me cataracts which had to be corrected with new lenses. I'm still experiencing seizures or mini strokes, doctors can't figure out which one yet. My appetite is still non existent and I'm unable to digest most of the foods I previously enjoyed eating. I have anxiety over having to experience a recurrence of TTP, a possibility all TTP patients have to live with.
Turning the clock back to the year before I was diagnosed with TTP, there were a few symptoms already surfacing. I had been asking my husband where I was or where we were headed, on a frequent basis, so my brain was already being affected by TTP. I'd get lost driving in familiar areas and couldn't figure out how to get home, even with a GPS. Driving at night was nearly impossible due to the glare of oncoming traffic. My peripheral vision was weird, I used to see a ticker tape of white flags every so often, especially with my left eye. My appetite was iffy, I was becoming really picky about what I wanted to eat, when I wanted to eat anything at all that is.
Many doctors had previously told me that my pain threshold is high. I also have a low tolerance to most medications especially when I take antibiotics. Two Tylenol tablets would put me to sleep for four plus hours, that's how intolerant I am to any form medication. This hasn't changed despite the amount of foreign substances my body has had to endure lately. I'm now allergic to penicillin and that's it.
The problem with having TTP is that this disease is so rare, little is known about it. Every patient experiences different symptoms and the course of action differs because of this. The two constants for any TTP patient are plasmapheresis and steroids. All other symptoms and treatments vary depending on who is affected. For example, some patients never experience bruising (purpura) like I did. They get skin rashes instead. It's a very unique disease in that it affects people in different ways.
Nevertheless, the day after, I was walking around the hospital as if nothing had happened, still not understanding the gravity of my situation. Maybe it was the steroids already kicking in, I don't know why exactly, but I had tons of energy and wanted to stay mobile. As soon as my plasma was replaced with donor plasma, I was ready to go home, so I thought. I thought wrong, because, I still had eight more days of plasmapheresis ahead of me at that point.
Stay tuned to learn more as I remember snippets and sort through what is real, what I imagined or experienced the weeks prior to TTP . Some of what I believe I experienced then as otherworldly, may just be how my brain was reacting to TTP.
Stay well and in the meantime, if you would like to donate towards TTP research, follow this link https://www.answeringttp.org/donate-now.