Hi there---Welcome to the group! You aren't Gill, are you? This sounds so similar to another story we heard where a woman had recently been married and then had TTP.
On the scars, they will go down....or they should. I had my cathetor in for a year and a half and my scar was pretty bad. It's gotten a lot better.
You will find lots of great support and information here!
Glad to hear you are doing so well! Take care,
Lisa
mcarr2 <mcarr2@...> wrote:
Hi, I just joined. I would like to tell you a little about myself.
I was diagnosed with TTP June 04, 2004. I had gone to the doctor's and was dignosed with a UTI (even with the purpura and vomiting, numbness, etc.) and a few days later I was literally hours from death when my husband came home for lunch and called the ambulance.
On the ride to the hospital, I couldn't tell the ambulance driver what my phone number was and I was drifting in out of conciousness.
When I arrived in the emergency room, I had only 1/4 of the blood you're supposed to have, I was so johndassed I was pumpkin orange, and my platelet count was 7. Yes, that's 7,000. They told my husband (we had been married less than 3 months at the time) that if I had gone to the small local hospital instead of Dartmouth Medical Center, I would have died.
I
spent 6 weeks in the hospital receiving daily plasma exchanges and undergoing surgeries. During this time, they tried to wein me off of the plasma exchanges 3 times. Each time, my platelet count plummetted.
When I asked for a second opinion, one of my doctor's called down to U Mass General in Boston (where they are doing most of the research on TTP). It was then that he found out about Rituxan. It's a drug that's used mostly for Leukemia patients.
I started having infusions of Rituxan, once a week (5 hour infusion) for 4 weeks, along with my plasma exchanges. Almost immediately, we started to see a change. I was slowly weined off of the plasma exchanges and by the time 4 weeks was up, I was completely off of the plasma exchanges and had spent 2 weeks at home, finally.
Boy, did it feel good to not have a catheder in my chest. My skin was finally able to breath again and started healing from the damage the
tegaderms did to it.
Since then, I have had blood tests every day, then every other day, etc. Now, I only go every other week. All my blood levels are normal and there are (so far) no lasting effects of the TTP - well, except for the scars (looks like I've been shot).
Well, I didn't mean to go on like this, sorry. But, if any of you have any questions, feel free to e-mail me at khunt@... or if you have AIM, my screen name is VTCowgirlAppy. And, of course, I'll be online checking up on this message board.
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