My name is Cathy Cook; I am a 51 year old wife and mother to a daughter that I love dearly and without her I would not be here today saying that I am a TTP survivor.
Life was going well for me and my family when one day in May of 2007 it seemed to have come to an abrupt halt. I had begun to feel tired, my appetite had changed, I wasn’t sleeping well, had migraines, bruises, a rash all over my body and I was beginning to turn jaundice. With this happening to me I soon realized that there had to be something seriously wrong with me. I drove myself to the emergency room where I was seen by a doctor who had ran blood and urine tests. The results came back stating that my platelet count was very low and that there was blood in my urine. The doctors were trying to figure out what exactly was wrong with me. Leaving the hospital that day with a prescription of Prednisone to take over the next few days and instructions to go back in for several blood transfusions. While driving home that evening I had this feeling of uncertainty as to what was wrong with me but knew it was not going to be good. When my family and I arrived at the hospital a few days later they had done more blood tests and found that my platelet count had not improved much and my urine was still showing signs of blood in it. They began the blood transfusions that day but had difficulty finding a vein to begin the transfusion. I ended up spending the night in triage until the transfusion was complete. Leaving to go home in the wee hours of the morning, they asked me to come back the following day for another transfusion. I didn’t quite make it to that next appointment. While I was getting ready that morning to go for the next transfusion, I had lost consciousness and my daughter had to call 911. According to my daughter I had passed out, turned blue around the mouth, and kept coming in and out of consciousness until the paramedics arrived. I was rushed to emergency by ambulance and the doctors had ran more blood tests, urine tests, and scans getting the same results as earlier that week. The doctors knew it was serious but still did not know what was causing this; at this point my family and I were beyond worried.
After multiple tests, a hematologist at the hospital found the culprit- I had TTP. The doctor told my husband that I had TTP, and would need to be air lifted to a larger hospital a few hours away with a plasma exchange machine and that without this it was a life or death situation. Shortly after I was loaded into an ambulance, brought to the airport and air lifted. At this hospital I was sent to ICU immediately for 2 days until I was stable enough to be on a ward.
I had a total of 13 plasma exchange treatments, as well as steroid treatment afterward. I had begun the road to remission. I was feeling better, but not my same old self. TTP had worn me out, as the months and years wore on I never forgot about the disease. It was always in the back of my mind, not if it would come back but when. In the pit of my stomach I knew my battle was not won and boy was I right. It came back again July of 2011. Again I had broken out in bruises, rash, headaches, and was exhausted. I went to the hospital to get them to run some blood work to see if I was correct in what my body was telling me. I sat at one hospital in my town for 5 hours and no one took me seriously. At that point I went home. Later my daughter had called me and I told her what was going on. She told me to get ready and she was coming to get me and take me to the other hospital in our city and she wasn’t taking no for an answer. Off we went and we were seen right away. The nurse who took all of our information knew this was serious, she had heard of the disease before-thank goodness. They ran blood tests, and yet again found a low platelet count. I was brought by ambulance to the next city a few hours away again for my second round of plasma exchange. I had 10 treatments this last round along with the steroid treatments.
I am now again in remission. Even more tired and exhausted than the time before. TTP has changed me. I cannot do all of the things I use to do, I get tired easily. It has changed my family, they are very aware of the outcome of this disease; it scares both them and myself. For something we didn’t even hear about 5 years ago, we are very aware now of how precious life is, and each day is truly a gift. I now sit and wait, as doctors tell me it may be a matter of time before I fight the great battle of TTP once again; If and when that time will come I may lose my spleen. The chances are very likely I will have it again, the question is just “when”? If it was not for the amazing nurses and doctors at both the Moncton hospitals and Saint John Regional who gave their unconditional support, love and care I would not be here today living every day to the fullest. They are in my thoughts every day.
I hope my story can help someone else like me, or bring more awareness of how much more common this “uncommon” disease is.
I have TTP and I am 3 in 1 MILLION!