TTP and Me
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TTP Affects the Lives of Many Yet is Relatively Unheard of. This deadly disease is a platelet disorder that KILLS young people. Scientifically named, it is Thrombotic Thrombocytopenic Purpura, and I have it.


--updated June 17, 2000--
"I was translating at Fort Belvoir in 1993 for the CIOR tournament (international military olympics). During this time I discovered large bruises all over my body. Though I was out of breath and had a severe headache the medics at Quantico didn't feel that I was even sick at all. However, I convinced them to take tests after which they sent me back to duty. Before I knew what was happening, an ambulance pulled onto the field and I was escorted onto the back of the vehicle. The medic looked at me and said, "You're very ill young lady and you have to go to the hospital." I was told my blood tests proved that something was very, very wrong with my blood. I was hospitilized, had bone marrow removed from my hip for a biopsy which proved that I did not have lupus or leukemia. After diagnosis, I was attached to a machine that removed the blood from my body, separated the yellow plasma from the rest of my blood, and redeposited my own blood with the healthy fresh frozen plasma of another person. I have had 5 occurences that have drastically changed my life. No time have I have been hospitalized for less than a month. The second occurance was for three months. A month in April of 1999. I am currently in the hospital and have been here so far almost 3 months.

From March 10, 2000 to May 26, 2000. That is the extent of my last stay. My doctor treated me with Vincristine, Prednisone, Plasma Pheresis, Plasma Exchange and many other medications for secondary illnesses. My counts are not stabilized.

The doctors taking care of me were excellent. Currently I am seeing a civilian doctor. He appears to be cognizant of TTP, but he doesn't know me yet. On the one hand, this is a new experience, a new doctor and a new plan. On the other hand, I'm nervous in dealing with a new person in such a sensitive time in my relapse. Knowing my daily counts gives me the insight to know what is going on with my body. Having my count done less than daily makes me feel vulnerable but I have to rebuke these negative feelings because satan is busy trying to cut down my confidence.

Through the grace of God I have made it through each time. I will make it through this time.

This has been the worst case yet. I was admitted by my mother because I was so disoriented that I could not make the decision for myself. I was vomiting, slurring, and unable to form sentences. I could not walk straight. I had severe headaches. I was in and out of consciousness. I could have had a stroke, had severe bleeding, or died. There were days I was so weak that I could only grip whatever I was closest to and hope that someone would come and just make everything go away. I didn't want to be sick anymore. I didn't want to be hooked up to anymore machines. I barely wanted to be alive. I got over it. I prayed. People prayed for me. I got well each time. Yes, I gained a lot of weight from the medications. I had to take large doses of prednisone. After a while, a little of the weight came off. The majority I'm having to work off. Yes, I missed tons of school. Last semester I missed one whole month right before finals. I took "Incompletes" for a few classes, but in-between treatments, the nurses let me use their computer, and I studied. I did research via the web. I had friends pick up my assignments and turn them in. I did as much as I could. I am blessed, and I am here to tell about it."

June 2002
This is episode number 6. Wow. After 7 days my doctor released me from the hospital. I'm doing apheresis on an outpatient basis. This is so different than the past. Every day I'm driven to get at least a 2hour treatment of plasma exchange. At first my counts were rising and I thought everything was going to be ok. Unfortunately, the past three days my counts have fallen. Today I have around 38 (thousand) platelets. I'm back on prednisone, persantine, aspirin, and folic acid. I keep praying and hoping for that turn-a-round.
--6-17-2002

After a lot of stress and questions the platelets have slightly elevated. We are going to skip a day of treatment and see what happens. Maybe the upward trend will continue.

Prayer changes things! My docs skipped apheresis on thursday and when I had labs on friday my platelets were up to 218! Can you believe it? I'm skipping the weekend and despite this awful catheter in my jugular vein, I am determined to have a relaxing weekend. It is hard to sleep at night because I'm afraid of bending it, but maybe it will be removed soon? If it has to be replaced then perhaps a subclavian line will be put in. They are much easier to handle. Anyway, I am very happy that things are turning around!
--6-23-02

:-) 301 today! We are skipping two more pheresis treatments and I'll go back on Thursday! After a whole weekend without pheresis! Praise God!
--6-24-2002

What a day. After a weekend without pheresis my counts are somewhat down and my ldh is up in the 300 range. Instead of just pheresing me twice this week, I'll have treatments three times. I'm praying that things will turn around. The devil is a liar. Praise God!
-7-1-2002

I haven't written in a while but with the ups and downs of my treatment it was hard to pin it down. Between the last post and this one my counts have risen and fallen with no real explanation. Currently I have over 200 platelets. That is a great count, and I've kept it up this week sans pheresis. If all is well on Friday's labs the catheter in my neck will be taken out and I will be back on my way to a normal life. Whatever that means!
-7-17-2002


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