My name is Vickie Gordon. I live in Iowa. I am 57 years old, retired, and married with two sons who are married with families of their own.
Before being diagnosed with TTP in 1981 at the age of 24, I had never heard of this blood disorder. I was very sick and very scared, my husband and parents were told I might die, which was very scary for them. I am so thankful for my parents who were there to care for my sons who were 3 and 9 months at the time.
The first time I had an episode, I had been sick for a week when I went to see a doctor. I was very tired, sleeping a lot, and nauseous. The doctor thought I had the flu. He told me to go home, rest and drink lots of fluids. Although I did as I was told, I did not get better and, in fact, I began feeling worse. I went to see the doctor again. This time he said he thought I was anaemic and proceeded to give me a prescription for iron pills before sending me home. On Friday of that week, I could barely stand. I was not eating, yet throwing up so my husband took me back to the same doctor. The doctor told me I had not given the medicine enough time to work, but took more blood to send to the lab.
The next day was my parent’s 25th anniversary. I was standing in my driveway holding my 9 month old son when I had a stroke. Thank god someone was standing next to me and caught my son. My husband took me straight to the hospital. It was the emergency room doctor who diagnosed me with TTP after looking at the lab results from the day before. He immediately called in a doctor of internal medicine to confirm. I spent the night in the ICU, getting blood transfusions and was air lifted to the University of Iowa Hospital the next day. I received many plasma exchange treatments, as well as shots of heparin during my stay in the hospital. Because my kidneys malfunctioned, I was hospitalized for six weeks. I returned home and for six months I had monthly follow up appointments at Iowa City. During this time, my husband’s aunt and sister were a big help watching the boys for us. After the initial six months, I began seeing another doctor, monthly, who monitored my blood results.
I was never told I could relapse, so I was surprised when it happened. Since I knew the symptoms of TTP in my body - severe headache, fatigue, rash, and bruising – I knew when I began experiencing some of them. I asked for blood tests to confirm. I was then sent to University of Iowa Hospital for plasma exchange, because the plasma is frozen and is not available in my area.
Since my initial diagnosis I have relapsed twice, at age 33 and 43.
I am very thankful for my GP, who listens to what I say, and if I am not feeling well, will order a blood test to put my mind at ease.
I do not feel TTP has affected my life, as far as working, traveling and enjoying life. My only concern is I do not know what caused it. The last time I was in the hospital, the doctor told me he thought it was hereditary, but I have never been tested for this.
As I age, I worry about different health concerns and the medication or treatments that could result in another episode.
TTP is both physically and emotionally painful to go through as a patient. But it is also very hard as a patient to watch your loved ones go through it with you. It was very hard to watch my husband and family take this journey with me.
Today, I feel blessed to be here, to enjoy my husband, sons and grandchildren. I am thankful to all those who give plasma and hope for a cure so others do not have to experience this disorder.