Hi! My name is Candice and I am 27 years old. I live in Walton, KY - a small town just south of Cincinnati, OH. I live with my 5-year-old daughter and I am currently working as the Sales Manager for some hotels in my area.
The first time I was diagnosed with TTP was August 2006, and had never heard of such a disease before. I was 21 years old and had just found out I was pregnant for the first (and only) time. I was in college, had just broken up with my boyfriend and working in a credit card call center, so getting pregnant was not planned.
Driving to work just a few days later, I had what I thought was a panic attack. Both myself and the ER nurses assumed it was from stress and I was given a mild sedative and sent home. Within a few hours, I became violently ill. I visited my family doctor the next day where he drew some blood and gave me a prescription for nausea and sent me home. A short time later I was called and asked to come back so they could re-draw my labs - they thought they had messed them up. I returned, had more blood drawn and before I could return home, they called again saying I needed to go to the ER at our local hospital. I remember going to sleep in one of the rooms in the ER that evening and woke up about 4 days later in the ICU at University of Cincinnati Hospital. I did not fully comprehend what was happening for a few days. When I was finally lucid, I was told my platelet level was approximately 6,000 - and they may have to terminate my pregnancy if it didn't improve.
After another week in ICU, my numbers slowly climbed enough to move me out of the ICU to the Critical Care Unit, where I spent the next 4 weeks or so. When I was finally stable enough to be discharged, I still had to return for daily visits to the dialysis unit for plasamapheresis! I spent the remainder of my pregnancy continuing to feel as though I lived at the hospital, either pheresis treatments, hematologist appointments, or OB visits.
Thankfully, though, I delivered a healthy baby girl in March 2007 – truly my miracle baby - 2 weeks before her due date, weighing only 4 pounds 11 ounces and entirely perfect - just tiny :).
During my last few months of pregnancy, I had consulted my OB about birth control since I was told my pregnancy triggered my TTP. I asked about a hysterectomy but being only 21, my OB refused as she did not want to throw me into early menopause. I then asked to have my "tubes tied", which she agreed to do - she told me that had I been pregnant in high school and this happened, I most likely would not have survived, but in time, with the more that is learned about the disease, maybe it would not be so life threatening for me to have another child.
In August 2007, I relapsed. I was violently ill one morning and became disoriented while driving. I somehow managed to call a friend who found me using landmarks! I was admitted with 7,000 platelets, and this time, most definitely NOT pregnant. During this episode, my hematologist approached me about an experimental treatment called Rituximab. I agreed and went through 4 rounds, which was about as fun as the plasmapheresis!!
I was in remission until August of 2012. I was in London, KY for work when I woke up tasting blood in my mouth and feeling very sluggish – I got in my car to begin the 2 hour drive back home when I became disoriented. I was taken to the local hospital, where the ER doctor yelled at me and told me to "stop it" that I was having a panic attack - even though I wear a medic alert bracelet After the lab work came back that yes, my platelets were at 9,000 - they arranged to fly me to University of Kentucky Hospital as they were the closest hospital equipped to treat me. While being prepped to go, someone had read that I need "fresh frozen plasma" - so they proceeded to hook an IV into me and put it in there!!!!!!! It was unbelievably painful and by the time we reached UK Hospital, I looked like I was 9 months pregnant again and felt like I was going to burst at the seams!! When UK drew my blood my platelets were at 4,000 and dropping.
They tried to put a port catheter in my neck where the previous ones had been but after much stabbing, decided that area would have to wait until the radiology department 'opened' the next day. I needed treatment immediately however, so they opted for the next option - my femoral artery - in my leg! OUCH. I never thought I would actually MISS seeing University of Cincinnati Hospital, but after those two, I was begging to go there!!
I finished my pheresis at UK and about a week and a half later I was finally able to go home. I have now been in remission for about 4 months, and my hematologist says that if I relapse again, it’s more Retuximab, since that kept me in remission for 5 years.
I was tested for Adamts 13, which was negative, so I am told that there is no way currently to test my daughter for the disease. All I can do is watch for the signs in her and educate her when she is older.
Some days I feel like a hypochondriac. Occasionally, I'll taste blood in my mouth or days will go by that I am just constantly tired or I find new bruises, and I have an internal struggle - do I go to the doctor, or is it all in my head. What if it happens while I am driving again? I was extremely lucky before. What if my daughter is in the car with me? Barring regular doctor visits, I try to remain aware of my body as best I can without overreacting. I wish we had a tool like diabetics testing meters, because I believe a little part of all our stress as survivors is the relapse paranoia. It happens so fast and signs are usually so subtle that by the time it happens, we are already an emergency case.
I am not sure what the future holds for my daughter, or myself and as I have already learned (3 times) life is precious and tomorrow is never promised. I still stress about things I probably shouldn't, but if I let it take over my life - then I won't have one!!