ITP Personal Stories

Night to Remember

My name is Amanda. I am currently 23. At the time of my diagnosis, I was 17 and a senior in high school. I had already picked out the college I would be attending in the fall. I was seeing someone and very happy. Then it happened...

Saturday night, I had date with my boyfriend. We watched a movie at my house, then he went home. At the time, my mother would spend Saturday nights at her boyfriend’s. So, that night when I went to sleep, I was the only one home. I did wake up to use the bathroom during the night and noticed I had a blood blister on my lip. I figured I bit it at some point. The next morning, I woke up with a nose bleed. This was not uncommon in the winter for me. Since I was young, I would often have small nose bleeds because of the dryness of the house. I did the usual kleenex thing and settled down to watch TV.

It got progressively worse. The bleeding became faster. I had to spit often because of it going down my throat. I became nervous. This wasn't right. I had to stand over the kitchen sink at this point. I decided to call my doctor, who is also my neighbor. His wife, who is a nurse, answered the phone. The first suggestion she gave me was to sit down so I would calm down. I told her I couldn't leave the sink. With that statement, she said they would be right over.

Upon Dr. Joe's arrival, there was so much bleeding, he could not figure out which side of my nose was actually bleeding. He decided to try to close my nasal passages off. Usually, a doctor would do this procedure using tongue depressors held together by an elastic and then pinch the nose with them. All we had were butter knives. Not very comfortable and it did not work. He decided my nose needed to be cauterized to close off the ruptured vein. Off to the hospital. I had to take a metal mixing bowl with me as a catch basin. To this day, I can’t look at that bowl the same way.

At the hospital, they took me right in and gave me my own room in the emergency area. The first thing they did was try to cauterize my nose through conventional ways. This involved shoving what looked like a piece of incense up my nose. Whatever was on the end of the stick was to burn the vein closed. When this didn’t work, they said they had another method. They brought in some equipment and told me to lift the back of my shirt. They attached a cold metal plate that had some jelly stuff on it and some wires. I asked what that was. The nurse told me it was the grounding wire. With that, I got a little nervous. So, they electrically cauterized my nose, and it worked. Then, they shoved 6 ft. of gauze up my nose. I looked good. At this point, my mom had arrived. I was moved into a curtained area with a bed. Mom did a typical mother thing and wet a tissue with her spit and tried to clean my face. Embarrassing. I heard her say that she couldn’t get a few spots off, but she would get them later.

The nurse, who was a friend of the family, came in and took some blood just to make sure I hadn’t lost too much. At this point, my nose had hemorrhaged for 5 hours and I realized I had not had a chance to pee all day! As I was relieving myself, I noticed spots on my legs. Strange. I also had my period, and it was heavy. That was not uncommon for me. Ever since I had started menstruating, I had been irregular and heavy at times.

I got back to my gurney and the nurse returned for more blood. She said there had been an error and needed to retest. As I waited, I noticed my arm where blood had been taken. There was a large bruise extending from the middle of my forearm to the middle of my upper arm. Strange again. My hunger was starting to overwhelm me and it was dinnertime at the hospital. They put me in another room again and gave me dinner. I didn’t care how unappealing it was, I was starving. Within seconds, a doctor came in. He said he needed to talk to mom and I about what happened. The doctor said that when the first vial of blood was tested, no platelets were found. With the second vial, they counted the platelets by hand. The found 2,000. I understood what he was talking about, but the numbers meant nothing until he told me I should have about 300,000. The first cause he listed was leukemia. I suddenly wasn’t hungry. Among the other three things he listed was ITP.

The first thing that needed to be done was to raise my platelet count. I was put in a hospital room of my own and they started treatment for what they decided was ITP. First, they gave me a transfusion of 7 liters of platelets. My body killed them instantly. I had no clue how severe my condition was. Emotionally and physically, I looked normal (aside from the red spots on my face and body). I could tell something was really wrong when my mom would leave my room, trying to hide her tears. She told me later that they doctors didn’t expect me to live through the night because of a possible hemorrhage in the brain. The next morning, the next course of action started. They started me on steroids (yes, prednisone) and gave me gamma globulin intravenously all day. Within 24 hours, my count went up slowly. Daily, weekly, monthly, and finally yearly blood tests show no problems. Apparently, I am one of the lucky ones.

Emotionally, this did a number on me later on. I gained about 20 pounds and had to go to the prom like that. Normally weighing 130, I thought I looked like a beached whale. But, I got over that. But what I didn’t get over was the insecurity aspect. I felt that at any time, I could hemorrhage through my nose. So, I carried tissues around all the time. After leaving college after one year, I started seeing a therapist and then a psychiatrist for an anxiety disorder. They were able to trace my problem back to my ITP. I am now being treated for my disorder and have learned to live my life one day at a time.

-- Amanda