My name is Susan. I live in Seattle, Washington, I'm 53 years old, and I am a TTP survivor. My story begins in November 2013. I had recently been offered a job to work with homeless people at a medical respite shelter. My job included helping them with arrangements for their daily nursing and doctor visits, as well as sorting out issues regarding state funding for their ongoing care. I loved my new job; not only did it give me a chance to help those in need, it was also very gratifying.
It was a Thursday morning, I was on my way to work and everything seemed normal. On this particular day, I was taking the train, rather than driving, due to car trouble. I remember waking up that day with a slight head cold and more symptoms that I passed off as a seasonal flu. I felt a little under the weather, but not feverish, so I thought it would be safe to be at work and that I would not be spreading anything to others. I really didn't think much of these symptoms because the flu was going around the office and everyone who had it recovered quickly. Since I'm rarely sick, I thought I would be among those who quickly recovered.
A couple of weeks passed and I was still suffering from flu-like symptoms. We were coming up on the week of Thanksgiving and I still wasn't feeling like myself. I finally decided to take a few days off to try and recover from whatever it was. I loaded up on some over the counter flu medications, lots of soup, crackers and juices, as ordered by the nurse at my doctor's office. This method worked, and after a few days, I was able to return to work.
For a few weeks I felt fine, with maybe a slight headache now and then, but nothing that seemed too serious to me. Then came the week before Christmas. It was Monday morning and I got up to get ready for work, as usual. I remember feeling dizzy, as though the room was spinning, but I thought maybe I got to my feet too quickly, thus the dizzy spell. But that wasn't it at all because another full on headache followed that dizziness. I also remember new symptoms of severe stomach pains and a purple like rash that began to develop on my neck, hands, arms and legs. The rash began to itch intensely, hurt and even bleed a little. My sister noticed this, and convinced me to go to a doctor.
My doctor was able to see me right away and I explained my symptoms to her. She sent me home with antibiotics for what she and I both thought was a sinus infection, and other medications to combat this so-called flu. She said the rash could be due to something I ate, and to just keep the area clean, dry and moistened. It should heal in a few days. That treatment plan stopped the itching, but the rash was still there.
Then came the week of Christmas and still, I wasn't quite myself. In fact by this time, I was feeling pretty rotten. The medication wasn't working and I felt even worse than before. That Monday, I went to work but found that I couldn't stay out of the bathroom. I was severely nauseous and I had blood in both my urine and bowels. That was when I realized something was terribly wrong. I called my doctor's office, spoke to the nurse and she said I needed to be seen as soon as possible. She scheduled me an emergency visit for the next day and said if I couldn't wait until then, to go to the nearest ER. I braved it out the night and went to my doctor the next day. I was in so much pain, that I could barely walk. This time, the doctor took some blood. She ordered different medicines, based on my symptoms, and again sent me home. Later that evening her nurse called me, she was trying to get a hold of me to tell me to go directly to the hospital to be admitted. By this time I was so sick, that I slept through multiple phone calls of them trying to reach me. It wasn't until the next day, Christmas Eve that they finally got in contact with me. I did what they said and went to the emergency room and was admitted.
At first, the ER doctor couldn't figure out what was going on and so they took more blood. I remember being very agitated because I was extremely nauseous, and tired of them poking me with needles. Finally, they received my blood results and my platelet count was extremely low. The emergency room doctor told me he had called in a Hematologist. He said the Hematologist was going over my blood work to determine my condition.
About an hour later, he came back to tell me that I had extreme anemia, and that they were going to give me some blood. I was admitted into the intensive care unit and given blood transfusions. By this time, I was really scared and I didn't get the chance to see the Hematologist until the next day. When I did meet the Hematologist the next day, he told me after further examination of my blood I had a condition called Thrombotic Thrombocytopenia Purpura, in short TTP. He then told me they were going to put a catheter line in my neck so that they could start giving me plasma. I asked him what would happen if I didn't get the plasma and he said I likely wouldn't make it through the night. I remember thinking “What? How could this be happening to me?” Naturally, I decided to go ahead with the treatment.
I don't know how much plasma I received, but I am very grateful to those who donated their blood products to the Puget Sound Blood Center. My emergency room doctor, my Hematologist, all of the nursing staff (including the apheresis nurses) were very kind to me during my hospital stay. Everyone took extra special care of me, making sure my experience was comfortable. I was in the hospital for 13 days, and over the holidays. But if it hadn't been for my doctors, the nursing staff, prayer, and, most of all, God, I wouldn't be alive today.
I know my battle with TTP isn't over, and that there's a chance for relapse, but with ongoing research I am hopeful that a cure can soon be found. Now I know what to look for when I'm not feeling well and when I should seek immediate medical attention. TTP has changed me forever. I no longer take life for granted, and live each day as God grants it to me.
Don't ignore your body when it tells you something is wrong, because it likely is. Seek immediate medical attention. For all of those with TTP, stay healthy, and high platelets to the rare 1 in 3 million of us with this dreadful disease.