Laura Johnson


In 2008, I was diagnosed with TTP. I was 20 years old and a junior in a California college. I was nearing the end of winter break when I got a really bad cold. I was getting constant headaches, was really tired, and suddenly I started getting massive bruises on my hips, arms, and small red blood dots on my stomach. I could connect one bruise to running into a table corner, but not the others. My lips were cracked with blood scabs, my skin began slightly changing to yellow, and my urine was orange with blood. 

At first, I thought the headaches and tiredness was from my cold, but when the bruises showed up, I knew something was wrong. I went to my primary care doctor a day or two after the large bruises appeared, and after getting my blood tested, I was sent to the ER. My platelet count was down to 13,000 and my hemoglobin was also very low.

I was first sent to the oncology ward and told I most likely had leukemia. The next day they did a bone marrow biopsy, and thankfully, the test came back negative. My numbers dropped to 10,000 and I was given a red cell transfusion. As the mystery patient, I was tested for two days before they diagnosed me with TTP and started treatment right away. When the test came back a month later, it was confirmed that my Adamts13 was below 5%.

They gave me another two pints of red cells, started me on prednisone, and I started plasmapheresis that day. At this point, I was telling my friends I was bionic and being given superman blood. I was a quick responder, and after each plasmapheresis treatment, my platelet count doubled.

After a week of treatment, my numbers were normal. I was released from the hospital and taken off prednisone. I was determined to get back to school and my normal routine, so I pushed myself rather hard.

I was released on a Friday, and back to school on Tuesday. I had only missed the first week of classes, and I had wonderful teachers who worked hard to keep me updated and yet allowed me to rest. When I went back to school, I met a special man in one of my classes. My University is a two-hour drive from home, so I was going back every weekend for labs.

I had low energy as I was building my strength back up, and I continued getting migraines (which I had never had before). Four months later I started feeling tired again, getting small bruises, so I headed back to my doctor and was admitted to the hospital again. We caught it early, and my platelets never dropped past 16,000. My doctors think it was a continuation of the first bout never really going away, so this time I was released with the catheter and I continued a second week of outpatient treatment that was tapered. When I was hospitalized, that special guy called me each night to talk for hours and to tell jokes. When I was back to school, we went on our first date.

Time passed, and life returned to normal. I left the hospital determined not to take life, or my health, for granted. I graduated a semester early, moved across the US to attend graduate school, lived abroad for a summer, focused my thesis on peer mentorship in chronic illness, and took a job where my work is focused on improving the experience of healthcare. That special guy also went on to graduate school a couple states over, and we made it work over the distance. Then we got married, and honeymooned abroad before we moved back to the west coast for another adventure.

I hadn't seen a hematologist in a number of years, but with our new move, my gynecologist recommended I find a hematologist just to be safe. I did, and he said it'd likely never come back since it had been 6 years.

Two months later, I relapsed! I started getting small bruises, red dots, and my urine was turning orange. I didn't want to believe it, but I knew what it had to be. When I went to my doctor, my platelets were at 10,000 and my red cells were fine. The hospital I ended up in didn't have an in-house pheresis team, and apparently they had a very busy night, so I was "held over" until I could be treated.

My platelets dropped past 7,000 and my neck catheter wouldn't stop bleeding. My husband and I spent the night and most of the following day arguing with staff and a varying shift of doctors about where the plasmaphersis team was (first we were told "it will happen tonight”, then it was at 9am, then noon, then 2pm etc… and my doctor was out for the weekend). I was getting chest pain, and getting scared.

We were lucky to have good nursing staff that continued to argue on our behalf, and "held me over" until the pheresis team arrived. To hold me over I was given plasma slowly. I was given a red cell transfusion since I had lost so much blood from my neck catheter, and despite initial concern, I was also given a platelet transfusion since I was so low. I was told I had to get platelets due to being so low, even though a platelet transfusion can increase the number of clots. When I was finally started on plasmapheresis, I felt much better. I went through treatment for two weeks, tapering off on the second week, and continuing on prednisone for about a month. I was also given 4 treatments of rituxan to help prevent a relapse. That was about 2 months ago, and life has returned to normal.

My doctor has encouraged us not to be afraid of having kids in a couple years, as he has had other TTP patients deliver children with no problems. My message to other patients is that despite TTP, life can still go on and be a joy. TTP has continued to harden my determination to work hard to hold onto health, sunshine, and a good life - to always be alert to my body and to what it feels.

I feel very lucky for many things, and thankful for having a supportive & loving family, a wonderful husband, friends, and caring doctors/nurses that helped me through each struggle. I want to encourage everyone to donate blood, and to remember what author Viktor Frankl wrote, "The last of one's freedoms is the ability to choose one's attitude in any given circumstance."


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