My Name is Nicole. I am 30 years old and I live in Massachusetts. I have been married to my amazing husband John for 13 years, and we have 2 sons, ages 15 and 11. I work at Lahey Clinic Hospital as a Medical Assistant, I have worked there for 8 years. I am a TTP survivor.
I was first diagnosed with TTP when I was 24, in January 2006. I was having some bruising on my body, had blood in my urine and felt run down. Luckily I work at an amazing hospital and had blood work done and saw a doctor quickly. The doctor sent me home after the blood work and told me she would call me with lab results. Shortly thereafter, the doctor called me at home and said to go directly to the ER. I was never so scared in my life.
While I was laying in a bed in the ER with my husband and parents by my side, a doctor came in and told me that I had a rare blood disorder called TTP and my platelets were 11,000. That night they inserted the line in my neck and started treatment, I recovered with plasma pheresis after about 3 weeks. I thought that I was better and it was a one time thing that I would never get back. Later that same year, in July I was having the same symptoms so I went to see my hematologist, I was admitted again and started plasmapheresis. I wasn't responding like I did the first time so my doctor started me on Rituxin, my miracle drug! After receiving Rituxin and pheresis I finally went into remission and this time I went into remission for 3 years. I relapsed again in January of 2009, treated with plasmapheresis and Rituxin and responded immediately. I want to mention that I have an amazing Hematologist, Dr. Neil Weiner, Lahey Clinic who takes wonderful care of me! As I sit here and write this, I was just discharged from the hospital 3 days ago....On May 25,2012 I went for my 6 month follow-up with Dr. Weiner and after I got my labs done he always comes in and as soon as he opens the door tells me my numbers...this time he opened the door and said "how are you feeling?" I knew when he said that, that something was wrong...I had NO symptoms this time, no bruises, blood in my urine, fever, or fatigue. He continued to tell me that all my labs were normal except my blood smear and my platelets were 106,000...my usual count is between 240,000-270,000. The good news was that we caught it this time REALLY early so I was admitted for TTP for the Fourth time!!! This admission was for only 5 days because of how early it was, I received plasma pheresis that same day and everyday since then. I am 7 days out after being admitted, so far had 7 plasma exchanges and 1 Rituxin infusion and today my platelets are 232,000!!!! Tomorrow I will go for my second round of Rituxin and another pheresis and I will be weaned off the pheresis hopefully with in the next few days. TTP has given me horrible anxiety that I've been dealing with since the first time I was diagnosed. I consider myself extremely lucky to work at such a great hospital and to have such a compassionate and smart team of doctors that take wonderful care of me. Lastly, I just want to say that the Rituxin really helps put you in remission quicker and for a longer period of time.....I am always hoping that this is my last struggle with this HORRIBLE disease and I can live the rest of my life without getting it back, but I know its always a possibility and its just so hard to accept but I know I can beat it every time, I've beaten it 4 times already!!!
I'm happy I found Answering TTP Foundation and appreciate raising awareness because more people need to know about this.
Thank You for reading my story,