Hi, my name is Stacy Kertzer. I am from Montreal Quebec and I am 35 years old. I am a restaurant manager and have been with the same company for the past 10 years but I am a certified chef by trade. Currently I am not working due to the pandemic. On top of TTP, I also have multiple sclerosis (diagnosed 7 years ago).
Here is my TTP story:
I was first diagnosed in January 2001 at the age of 14 by an adult doctor (Dr. Margaret Warner) at the Royal Victoria Hospital in Montreal after a long, two-month prior battle of the Montreal Children’s Hospital doctors thinking I had leukaemia. Dr. Warner knew what it was that I had after seeing my blood work and looking at my case. I was rushed to the adult hospital, and I was then treated using cryo-poor plasma exchange. After one treatment my platelets and hemoglobin raised. We continued with the plasma exchange for two weeks or so before we changed it to every few days, and then I was in remission. I continued to be followed closely with blood work every few weeks, then slowly started to change to every month then soon every 2-3 months and so on until I was going every 6 months.
Ten years later, in January 2009, I took the morning after pill (not knowing I was not allowed to take it), and was put right back where I started almost ten years earlier. I had to restart the whole process over again just like I did when I was 14.
Fast forward to January 2021. I woke up January 7th not feeling well thinking it was just a bad period, but it turned out to be my worst nightmare during a pandemic. I was bleeding extremely heavy for a day and a half, threw up for 12 hours, woke up on the 8th feeling a bit better but very weak. I woke up on the 9th with petechia on my chest and arms. I decided to drive myself to the hospital for a CBC. Turns out my platelets were at 11 and my hemoglobin was very low as well. I was admitted to the hospital and had a central line placed in my neck to my heart for plasma exchange treatments. After being treated with FFP plasma and telling the doctor on duty that I needed to be treated with cryo-poor plasma exchange they finally listened, but it didn’t seem to be enough this time around. They spoke to me about rituximab and caplacizumab. My doctor decided to first try the rituximab, but that still wasn’t enough so caplacizumab was the next step.
On the morning of January 20th, my platelets were 17. I then I had my first dosage of caplacizumab, followed by cryo-poor plasma exchange. On January 22nd I woke up with the great new that my platelets had gone up to 162. That afternoon, I had my second dose of rituximab and my next dose of caplacizumab. On Saturday morning, January 23rd, my platelets went up to 240.
I was hospitalized for 16 days and was finally sent home with the remaining caplacizumab and instructions to come back on the Monday morning for more blood work and possibility of plasma exchange treatment. To our surprise on Monday January 25th, my platelets had jumped to 448.
As of February 1st, my Adamths13 was still non detected, but my platelets were pretty stable in the 300’s. I had my 3rd dose of rituximab that day. We have tested my Adamths13 weekly since I have been out of the hospital. On February 10th we did my 4th rituximab treatment, two days later my Adamths13 results came back at 21%.
I continued to go to the hospital for blood tests and Adamths13 testing weekly. I finished my caplacizumab doses on February 24th. I continue to take 5mg of prednisone per day as per my doctor’s instructions. Today, March 10th 2021, my Adamths13 level is now at 65% and my platelets, LDH and hemoglobin are all stable. If it wasn’t for the caplacizumab I don’t know where I would be today. This medicine is a miracle.