Hi, my name is Alice, I’m a 62-year-old woman living in Vancouver, and recovering from TTP.
My journey began in 2019, July to be exact. Because of a previous diagnosis of environmental sensitivities, combined with living on a farm, I began feeling poorly in July. I attributed my lack of energy, sensitivity to bright light (like the sun), and headaches to environmental intolerances. Weeks passed and I wasn’t getting any better, despite spending most of my time indoors, away from the sprays being used on the neighbours’ blueberry fields. Nothing helped, I was getting worse and couldn’t figure out what was wrong with me; however, it didn’t feel urgent to me. I simply thought I had allergies and had to deal with their effects..
August arrived, I’m told, but by this time confusion had set in. I don’t remember much about this month and even less about the month of July. I knew I was sick, something was not right, especially when I started throwing up for no apparent reason and my body had begun to shake, as if I was having a seizure. It was all so confusing, I still believed it was just a really bad year for environmental intolerances.
It got worse. While driving, I’d often get lost in familiar places, couldn’t remember where I was headed, or how to get there. Suddenly, night driving was nearly impossible due to the glare from oncoming traffic. I was loosing weight and had zero appetite, just the smell of food made me want to run out the door. The headaches, oh the headaches, they were intense, and nothing I had previously tried was working.
My husband kept insisting we go to emergency, but I kept saying no, thinking I didn’t want to bother physicians with my environmental problems, thinking I already knew what they would recommend. I did agree to see my GP just to make sure it wasn’t something else. This was on the Monday, and my appointment was for the Thursday of the same week.
My regular GP was away and his partner was carrying the load. In my haze I forgot to mention the issues with my brain. I only remembered to mention my inability to eat, how tired I was all the time, and that when I ate, my stomach would look like I was six months pregnant for hours. He sends me for blood work to test for gluten intolerance.
The following day my regular GP called. “Alice, I need to see you right away. Your blood work is off the charts. First go to Lifelabs and do more blood work, I will fax them the requisition.” Three hours later I’m headed to emergency, directly from the doctors’ office. “They’ll be expecting you, I’ve called ahead”, he said. Still, I had no clue of the severity of my situation, but I knew my blood work results were scary to him. The doctor couldn’t believe I was still walking and talking. My white blood cell count was off the charts and platelets were at 2,000.
On August 22, 2019, the day my husband and I were to celebrate our 25th wedding anniversary, I ended up at the emergency room of Abbotsford General Hospital. All I remember is my husband and I sitting in the emergency room waiting to be called when he suddenly looked alarmed because what I was trying to communicate to him didn’t make any sense. I was conscious and aware, but unable to communicate. This is all I remember from this emergency room visit. The next time I gained consciousness again, I was in an ambulance travelling to Vancouver General Hospital.
I was in ICU all night, as well as part of the following day receiving plasma exchange. After being moved to the Acute Medicine Unit, the plasmapheresis continued for another 9 days. Sometimes it produced an allergic reaction, but mostly not. After almost two weeks, my numbers were getting better, still high but mostly because I was now on steroids, so I was told. Three weeks later I was discharged from VGH.
Residual TTP problems abound. My brain was, and still is, in terrible shape. I have lesions at the back of my head and continuous fluid build-up. The neurologist performed a lumbar puncture to remove cerebrospinal fluid for testing. The results were good, no infections. Still, I can’t remember simple things like how to turn a door knob or how to put my robe on. The headaches, they feel like Chernobyl exploding in my brain. The worst headaches I had ever experienced and I’ve had many due to environmental sensitivities.
After an MRI and CTV scan, they found fluid was building up once again in my brain and I that had more lesions. They were barely noticeable, easy to miss if it hadn’t been for the CTV scan. I was having mini strokes or seizures, they weren’t certain which.
Migraines were ruled out, but the sensitivity to light and sound was still there. After testing, it was revealed I now had cataracts thanks to TTP. Although my vision is almost perfect, at 20/25, I couldn’t watch TV or read a book because my depth perception was off, as was my ability to understand anything before me. TV was especially bad. Images were pixelated, watching anything was a total waste of time and brought on more headaches. The cataracts are being taken care of with new lenses next week. Eight months later, my eyes are on the mend, thankfully. Most of the pixilation is going away with time.
My stomach or digestive system was also affected. Most of what I enjoyed eating I can no longer digest, which make meals very unappealing when they’re followed by pain. With the help of a dietician I’m now on a low FODMAP diet that has helped with this immensely. TTP also gave me GERD, a stomach condition that medication has cleared.
What is still most concerning for me specifically, beside the obvious concern of recurrence, are the seizures/mini strokes I experience. Before they come on, I can sense danger is upon me. The sensation goes like this: First my legs give out, then the upper torso and finally my arms and I’m on the floor, conscious of what’s happening to me, confused beyond belief. I’m aware I’m in danger but unable to help myself. I once tried to reach for my phone to call 911 but couldn’t figure out how to dial the number and couldn’t speak. I carry a remote now with a button on it that I can press and the company providing the service knows exactly where on our 130 acres the ambulance can find me.
My weeks are filled with appointments to see a hematologist, a cardiologist, a neurologist and ophthalmologists of varying degrees. I can’t drive for now because of seizures or mini strokes. I’m also unable to walk long distances because, since the plasma exchange of August and September 2019, my hands and feet hurt most of the time. I still get purpura, especially on my back and legs. I experience sharp shooting pain that feels like it’s in my veins, sometimes deep in my bones, on a daily occurrence. It only lasts a few seconds, but the pain is intense, and it happens often in different areas. Finally, I’m extremely tired all the time and still don’t have much of an appetite.
Slowly I’m trying to return to a normal life. Not the normal life I lead before TTP happened to me, but one where I’m glad to be alive regardless of its lingering effects on me.