My name is Ashlee, I am 27 years old and from California. At the age of 25 my husband and I received some exciting news, we were expecting a baby! We couldn’t be happier. 25 was a great year we did a lot of traveling, ran a half marathon, and now having a baby. Life was great!
Around 10 weeks along I started getting bad headaches, bloody noses and couldn’t hold anything down and I also had weird rashes all over my body. I called my OBGYN and they told me to take some time off work and just relax and gave me some nausea medicine. Still feeling ill I went to a walk in doctor who diagnosed me with a viral infection.
Two weeks have passed and I was getting worse. I was to the point drinking water or Gatorade made me sick. We went to our local ER and they drew some labs. Something was abnormal so they thought maybe the test was inconclusive. They drew my blood once again. Same thing, something was wrong. After two ER doctors checking me out, talking to me and not being able to figure out what was wrong they thought the best option was to transfer me to Stanford Medical Center which was 3 ½ hours away.
I was transferred via ambulance and once I arrived I had already 5 teams of doctors. I had kidney, OBGYN, Hematologist, Dermatology and Primary doctors. That first day was all a blur. I had test after test done. I had platelets of 13, hemoglobin 7, kidney failure, high calcium levels and this rash. All the labs were looking like I had leukemia so they did a bone marrow biopsy. I had X-rays, ultrasounds, MRI and tons of tests done. The rash ended up being eczema which I have never had before. After the bone marrow biopsy came back negative and blood levels getting worse they started treatment for TTP. What is TTTP we were all thinking, never heard of this before. ? That is all I could think about the first day starting treatment.
I was being treated by plasmapheresis, and high doses of prednisone. I was starting to feel better and my platelets were looking better. Being at a teaching hospital my hematology team switched doctors and the new doctor wanted to stop plasmapheresis for a day. That day had been Thanksgiving and that afternoon I started to feel sick again. Platelets started dropping again. Started treatment again and once again started getting better.
After 17 days in the hospital I was released to outpatient treatment. We had to stay in the area as the treatment I received is not available where I live. Treatment was every other day or every three days. Lab work was still done every day.
I went in for my 16 week ultrasound to find out there was no heartbeat. Just when we thought things were looking up. After recovering from losing the baby we were up there for another two months. It was quite the scare and quite the journey. I was told this could come back in future pregnancies and we still have yet to find out if mine was congenital or acquired. I had a genetic test and there was some abnormalities but none that could really determine. My adamsts13 has always been low and is still low a year later. My spleen is still slightly enlarged as well. Some of the hematologists think it was acquired some think congenital. We do know it was pregnancy induced.
This definitely has changed our life and our thoughts on becoming pregnant again. We still go back and forth about wanting to try again.
I can now live my life normal and I still feel like my body is not as strong as it was when it comes to working out, hiking, the stuff I did before I became sick. I now try to host as many blood drives as I can and try to bring awareness to this disease.
In total I had about 21 treatments which equals around 220 transfusions. I not only had plasma, I also had red blood cells and platelets transfusions.