My Name is Dixie Hayduk. I am a wife and a mother to 3 grown children. For 35 years, I was an ICU nurse at a major downtown hospital. At age 64, at only 2 years into retirement, I was diagnosed with TTP.
My TTP journey started inauspiciously. It was Thursday, November 13, 2008. I was driving to a luncheon date with a longtime friend, who was home visiting her mother. My friend was in Port Coquitlam, a city about an hour drive away. As I set out for this pleasant meeting, I recognized a discomfort in my upper abdomen but I didn't have time to give this attention. I had a date. This discomfort was not unfamiliar; I associated it with gall bladder problems. But for me, gall bladder has never been a problem mid-day with an empty stomach.
After arriving at my friend's home, I acknowledged the pain had gotten worse. I was sweating and light headed. My friend and I choose to go to the local emergency of the community hospital instead of lunch.
By 2 pm of that day, Emergency had ruled out heart attack and found a highly elevated amylase level in my blood. An ultrasound suggested a gallstone was blocking the opening of the pancreas - thus the very high amylase count. Regular blood work over the next 48 hours showed the amylase level decreasing, suggesting the gallstone was moving along. However blood work also showed declining platelets. After 48 hours, my platelets had dropped very low, I was voiding tea coloured urine and rectally I was passing moderate amounts of bright blood.
TTP was the suggested diagnosis. It meant nothing to me. I had dealt with one patient with this diagnosis in my entire career.
From the community hospital, I was sent to Vancouver General Hospital by ambulance with lights and blaring alarms. I arrived at the VGH Emergency at approximately 2 pm and was immediately introduced to a resident hematologist. At 8 pm, I was having a central venous line inserted. As an ICU nurse, I fully understood how hazardous this procedure is when the platelet supply is inadequate. At 11 pm, I was having my first plasma exchange, in the emergency department with the hematologist, her resident, the plasmapheresis nursing staff and that huge machine. My kidneys had stopped working and the rectal bleeding had diminished.
In total, I had a plasma exchange each day for eight days, after which my blood counts went back to normal and have not regressed.
I began hemodialysis after the third plasma exchange and had this treatment daily for six days. Three days after my last plasma exchange, the kidneys 'opened up' and I was able to void.
On Thursday, November 27, 2008, I returned home, five days after my last plasma exchange and two weeks after first presenting to that community hospital emergency.
It took about three days at home before the shock of these events made itself known, followed by three months of profound physical exhaustion. In hospital, I felt stoically practical and accepting of events. I was grateful and in awe of all the medical and technical interventions.
At home, I learned a little bit about TTP via Google. The best knowledge was obtained from the Answering TTP Foundation website and from reading the stories of others.
My family doctor learned of my situation when she started receiving lab results. She found where I was and made several visits while I was in hospital. For three months, I continued to visit Dr. S regularly. I submitted regular blood work for a year. No sign of relapse. During my closing appointment with Dr. S, she mentioned that cancer can be a cause of TTP, but I had no symptoms. We were using the increased amylase from acute pancreatitis as the trigger for my TTP. However, 3 years later, in October 2011, I was diagnosed with colorectal cancer. I have had surgery and then completed six months of chemotherapy.
My TTP experience feels like a distant miracle and many details remain very clear.
Will writing my story help the experience to fade? I am hoping so.
Dixie