I am 32 years old and I live in Lake Zurich, IL. I live with my husband and two boys (ages 4 and 2) and I have worked in the pharmaceutical industry for 10 years up until my last relapse, and have just started back doing consultant work for the same company I use to work for.
I was first diagnosed with TTP in April of 2002, 6 weeks before my college graduation. I was 21 years old and invincible, or so I thought.
I had a scheduled appointment to see my doctor after a car accident. About a week before my appointment, I started to get little dots all over my legs and a nose bleed that just wouldn't stop. Over the weekend, I developed large bruises on the inside of my knees.
Monday morning, I was tired, but I went to class, and then drove to my hometown to see the doctor. She asked me if there was anything new, so I showed her my legs. She said that I needed to have a CT scan because I was bleeding and she didn't know why. I didn't feel sick, just a little tired….so I figured I might as well get this over with. I went to the hospital, registered, and started taking the gastroview.
When I was walking out of the hospital the left side of my face and all around my mouth, started to go numb. I told my mom, she called the hospital, and they said they had never heard of that and to keep taking the gastroview and come back in two hours. We left for my little sisters softball game, but didn't quite make it there. When we pulled in the parking lot about ten minutes from the hospital, I started throwing up blood. I was slurring my words and I could not stay awake. My mom turned back around and took me back to the hospital. When we got there they said that I needed the CT scan and sent us down for one. I do not remember too much more from this night.
The doctors had told my parents that I had TTP and would be lucky if I made it through the night and that if I did they would discuss where to go from there.
About a week into treatment, I finally was aware enough for my parents and doctors to explain what was going on. I had never heard of TTP, I had never really been sick with anything. It was a lot of information to take in, but my family was there to help me through it.
I received plasmapheresis every day, but they could not get my platelets above 12,000. They increased my pheresis to twice a day and increased the volume of plasma I was receiving. After being in the hospital for two months, my doctors decided we should try Imuran and Vincristine. I started both chemotherapy drugs, with not much change. After about another month in the hospital, suddenly my numbers jumped up, I also got hit with all the other side effects of chemo (nausea, constipation, hair loss). But, my platelets went up, first to 60,000 then to 100,000 and so on. Success!
I was sent home and tapered off of the twice a day pheresis to once a day, then to every other day, until I was off completely. This experience forever changed me, at 21 I was lucky enough to realize how precious life is and how quickly it can change.
Since then, I relapse about every four years. I got sick again in 2006.
Two years later I gave birth to a healthy baby boy and then his little brother joined us two years after that. I get monitored regularly and just before finding out I was pregnant with baby number two, my Adamts13 test started to drop.
Then, a month after I quit breastfeeding, I noticed a large bruise on my arm, went to get my platelets checked, and they were at 13,000. This was in November of 2011. Same treatments as before, except this time I seemed to respond quicker, only to relapse a couple of days later. I was home the month of January and most of February, receiving pheresis daily.
Next, I came down with a fever and pain all over. Back to the hospital we went, where I was diagnosed with Endocarditis, Meningitis, a 4 cm mass in my right atrium, and two large pulmonary embolisms in my left lung. Again, I was sent to Northwestern Memorial in the city, my central line was removed, I was given 4 units of FFP to bring my platelets to a safe range, and I had open heart surgery on March 9, 2012.
I stayed on the chemo the whole time, and continued taking the chemo until October of 2012. It has now been four weeks of no chemo and my platelets are still at 250,000!
My family has been right beside me learning about the disease and what we can do to beat it! My husband has had to endure taking care of the kids, working, and getting to the hospital to see me, but we have survived. I am thankful to be here to see my boys every day!
I get so nervous whenever I have bloodwork done. Those are the worst five minutes of my day until they bring out the results. For now everything is good. I know that I will probably relapse in a couple of years, but I try not to let that dictate my life.
I am so lucky to have the support of my loved ones. I think that is what got me through every day in the hospital. I will not let TTP rule my life!
To all the other TTP survivors out there….stay strong, stay positive, and don't ever hesitate to get help when you notice something is wrong.
High platelets to you all!!