My daughter Kaitlyn was first diagnosed with TTP in July of 2015. We had noticed several small bruises all over her legs and arms during her daughter’s pool party. Kaitlyn scheduled a doctor’s appointment the following day but was unable to make her appointment since she felt too sick to drive. The following day she was feeling worse, she had always had migraine headaches and thought she was having a bad migraine. I told her we should go to the ER and get her rehydrated since she had been sick for two days.
July 15th, 2015 the ER doctors at Mid Coast Hospital in Brunswick were amazing; within 1 hour they had a preliminary diagnosis of TTP and were consulting with a hematologist at CMMC, a neighboring hospital. Kaitlyn’s platelet count was down to 7000! She was transferred to CMMC hospital where they had the equipment to perform plasmapheresis. When I arrived at the CMMC Kaitlyn was mostly unresponsive, later she said she remembered nothing from the time I took her to the ER and for several days afterward.
July 16th 2015, the doctor came in and had me sign a release to put in a central line needed for the plasmapheresis; she said Kaitlyn could bleed out because of her low platelet count. I didn’t realize the severity of the disease until then; I had no idea that my daughter could die from this disease! Fortunately, my sister, Pam is a nurse and she came to be with us at the hospital. Kaitlyn had her first plasmapheresis treatment from a wonderful, caring Red Cross worker named Sarah. Sarah was at the hospital daily for 16 days giving Kaitlyn her treatments, later she would attend my daughter’s funeral.
Kaitlyn’s organs were failing, she was in kidney failure for several days, and we feared she would need to start dialysis. Around the 5th day of plasmapheresis treatment, her creatine levels finally started to decline and her platelets numbers were improving.
July 22, 2015, was a rough day for Kaitlyn, her platelet count started declining, and she was very discouraged.
July 23, 2015: Plasma exchange day 8. Kaitlyn's platelet count has decreased over the last two days despite the plasmapheresis. Steroids were added to stop the immune system from fighting against treatment. The setback reminds us all of the seriousness and unexplained characteristics of this disease.
July 24, 2015: Day 9. Kaitlyn’s platelet numbers have decreased for the last 4 days which is troubling, plasma numbers close to count when she was admitted.
July 26, 2015, Kaitlyn was told that tests confirmed that she had a couple of strokes, damaging her brain. She was very distraught when she called me, thank goodness for Sarah, the Red Cross nurse for being there when the Dr. shared this news with Kaitlyn. Additional tests were done, no deficits found from the strokes.
July 31, 2015, after 16 days in the hospital receiving plasmapheresis, Kaitlyn was finally discharged. With a bagful of meds for her newly acquired HBP, steroids for the TTP, and a host of other meds she was on her own to treat her disease. She had a few follow-ups with her hematologist who told her she was doing fine and to go to the hospital if she had symptoms like the ones she had before. And she did go to the ER a few times when she was having a bad migraine or was feeling really sick. Always telling the staff about her TTP diagnosis, every time the diagnosis was negative for TTP – she was in remission.
April 25, 2017, Kaitlyn drove her daughter to school and came back home and laid down, saying she didn’t sleep well the night before and she had a headache. I had errands to run and later picked up Jayden from school for Kaitlyn. When I got home Kaitlyn was still sleeping on the couch, I told her I thought she should go to the hospital and be checked out. We left for the hospital around 4 pm, arriving at the CMMC around 4:30 pm; we checked in and waited to be seen. When Kaitlyn was being evaluated we told them about the TTP diagnosis from 2015, she was put in a room and blood was taken. The blood work came back with a platelet count of 7000. The TTP was no longer in remission. A hematologist was called, the Red Cross was called, but no treatment was done. She was not even on a monitor when she coded (still in the ER) at 9:25 pm. I was with her when she said “help me” two times, and then she was gone. The ER staff worked on her for an hour to no avail. She was pronounced dead at 10:30 pm – just hours after taking her to the ER. Cause of death on her death certificate was an ischemic stroke.
So many questions run through my head.
Why didn’t I take her to the hospital sooner?
Why didn’t I question the Dr. and Nurses and ask why they were not doing anything for her?
Why hadn’t I done more research on TTP and relapse?
My beautiful daughter died at 28 years old, leaving behind a 6 year old daughter. My heart is broken; I am angry and frustrated that hospitals don’t know how to properly treat patients with this disease.