I am a chronic Thrombotic Thrombocytopenic Purpura (TTP) patient. I have had idiopathic TTP in 2012, 2014, 2017 and now 2019. For TTP #4, my platelets counts are now back to normal and I am in the recovery phase.
We seem to treat TTP differently every time. I suppose that first I arrive with my condition in a different state and I have some history.
Let me tell you about TTP#4.
I go to have my blood taken on a monthly basis or about a week before I go on a trip of distance. I chart the platelet level and try to track the trends. I don’t have a lot of history as I have only been doing this since the start of TTP#3 in July 2017.
I was heading to California on March 8th for a business and pleasure trip, so I checked my blood on March 5th where the platelets were at a healthy 224. The normal range is 150 to 400 and I was typically tracking in the 240 range, so all was good. I had a wonderfult weekend in California with friends and we visited Yosemite National Park, great experience.
Tuesday through Thursday, I attended a conference at Apple in Cupertino. Everything was going fine, but I started to feel a little tired on Wednesday, March 13th. On Thursday morning, I was peeing a little dark, had a small headache and thought I might vomit before breakfast. I appeared to recover and attended the final day of the conference. Since I am a chronic TTP patient, I did consider TTP, but I ruled it out as I had no bruising, which was a symptom that I noticed for TTP#2 and TTP#3. I also didn’t want to panic, as I was traveling home Thursday night on a red-eye flight, so if I could just get home, I could deal with issues there.
I did skip dinner on Thursday night and had a pretty good sleep from San Francisco to Toronto. I was a little delayed in Toronto and did not get home in Ottawa until about noon. Still feeling tired and a bit down, I decided to sleep it off and didn’t wake up until about 4 PM. I talked to Alanna who was still at work and we decided to go get a blood test, unfortunately, the clinics close at 4 PM on Fridays, so we pushed it off to the next day.
On Saturday, we went to the local Dynacare clinic. It took three tries to find a vein, not normal. At 3:30 PM, I received a call from my hematologist announcing TTP was back and my kidneys are suffering. Do I have a driver? Go to emergency now as we are going to start plasmapheresis that day. I was quite surprised that the Dynacare test was completed so quickly and the rapid response by my doctor. Good work folks!
The doctors put a line into my jugular vein, and we started plasmapheresis that night and continued to do it for 15 straight days, from March 16th to March 30th. We also did the plasma exchange on April 1, 4 and 8 for a total of 18 times for TTP#4.
By April 8th, it was determined that TTP had been stopped and we would end the plasma exchange sessions. My platelets were still hovering just above the 150 range, but it was determined that this was in the normal range and I did not have any other TTP symptoms.
The next direction is to take a drug or drugs which will help prevent or delay the next occurrence of TTP. I have taken Vincristine, Rituximab and Cyclophosphamide in the past. The result has been delays between the start of the TTP episode of 26 months, 38 months and 20 months. Not good progress.
This time we will try Bortezomib marketed as Velcade which a therapeutic proteasome inhibitor. We will also monitor the level of the ADAMTS13 enzyme on a quarterly basis, which may indicate that TTP may be coming again, more to discus on this subject.
I’m hoping for 5 years TTP free.
Thanks, Bruce
@BruceFightsTTP
