I am 48 years old and Thrombotic Thrombocytopenic Purpura (TTP) has been in and out of my life for the past 17 years. I have always been very healthy, as I workout 3 to 4 times a week, eat well and do not smoke or drink. I have been an advocate of leading a healthy lifestyle, which has helped me deal with my TTP episodes. I was first diagnosed with TTP in January of 1994 at the age of 32. My children were 4 and 6 years old. This disorder affected me physically and mentally. As for the family, they suffered just as much.
It started with petechiae (small red dots) on my arms. The family physician had me go for blood tests and the results showed that my platelet count had dropped to 16,000. Normal levels should be above 150,000. My family doctor said it was due to my cold virus and I should recover soon. My husband wanted me to get a second opinion with his family physician. A call was made immediately to the emergency department for my admission. The hematologist on call diagnosed me right away by looking at my blood smear. He started treatment including 50 mg of Prednisone and Plasmapheresis the very next day. At that time, Plasmapheresis was done in ICU (Intensive Care Unit). The whole experience was very traumatic, as it included inserting the catheter in my neck and having to be hooked up to all the monitors. I was discharged after 2 weeks and the recovery took a very long time.
A month later in February of 1994, I was diagnosed with ITP (Idiopathic Thrombocytopenic Purpura). Although not as fatal as TTP, I was given Prednisone at a low dose to keep the platelets up. No hospital admission was required.
In July of 1994 that year, my TTP relapsed. For these few months, I was going for regular blood work and that is why they were able to detect the relapse. The same hematologist placed me on 200 mg of Prednisone and Plasmapheresis. The side effects of Prednisone were terrible. One of the side effects was vision issues, and at times my husband had to use a wheelchair to get me around. I was discharged after 3 weeks. I had gained 40 lbs from the Prednisone, which took me a year to lose.
Later that same year in September of 1994, ITP re-surfaced and they decided to remove my spleen. Fortunately, this placed me in remission for 16 years.
Then in February of 2010, I relapsed again with TTP. When I recognized bruising on my hands, I reported to emergency right away for admission. The medical team started me on 50 mg of Prednisone and Plasmapheresis immediately. I was discharged after 11 days. The Prednisone caused CSR (Central Serous Retinopathy) in my right eye. I could not see very well. This was difficult because I enjoy reading, and my work involves extensive use of the computer. The Retina Specialist performed a laser surgery in September of 2010. By December of 2010, I was finally doing well and was able to resume my normal work hours and routine lifestyle. Throughout the year-long recovery from this more recent TTP crisis, I was thankful once again for the support of my husband, family, friends, work colleagues and the medical staff. Moreover, since my earlier battles with TTP, my kids have grown from toddlers to young adults. Now it is not only their smiling faces that help me fight on, but their shoulders of support.
My remission was cut much too short. Only a year later, in January of 2011, I relapsed again with TTP. I caught a flu bug and the petechiae appeared on my thigh. Once again, I was admitted immediately and they started the Plasmapheresis treatment. I was not given Prednisone because of my historical vision issues with this drug. This time, the medical team wanted to be more aggressive in the treatment. I was given 3 cycles of Cyclophosphamide but my platelets would not stay up without Plasmapheresis. Next, was 4 cycles of Rituximab but again my platelets would drop without Plasmapheresis. These drugs are used to suppress the immune system. The doctors did more research and decided to do a nuclear ultrasound and discovered that my spleen had either re-grown or not been removed completely. As a result, a laparoscopic surgery was performed to remove the 2.5cm Spleen. After surgery, the platelets dropped again and they started the Plasmapheresis treatment. The Calgary physicians had never experienced this with a TTP patient. This meant going into an unknown territory, which worried me. I had tried to remain positive all along until this time, but now I was scared. My doctor passed on contact details for Answering TTP Foundation and I was happy to connect with other TTP patients for the first time to share experiences and knowledge. Shortly thereafter, a call was made to a couple of US Doctors that have been doing extensive research on TTP. They recommended the drug, Cyclosporine. After a few weeks, my platelets finally stayed up without Plasmapheresis. The plan was to keep me on a high dose of Cyclosporine for 6 months and then taper me off. Cyclosporine has some really nasty side effects. The doctors were not sure what treatments had finally worked on me. They said it could be all of the above.
Three months later in May of 2011, I was finally discharged. It was physically and emotionally very draining. The hospital staff, family and friends have helped me pull through this. My manager, supervisor and colleagues at work have also been very supportive. I cannot thank everyone enough.
I found out this year about Answering TTP Community. It is a great network and I am happy to be part of it. I realized how important it is to support each other and bring awareness of this disease. I am excited to walk on September 24, 2011 in my community as part of the first national movement for TTP. Hope you will join us!
Mina is helping to spread education about TTP. She bravely shared her story for a Maclean's online education initiative. The video is available still here.