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Re: Thrombotic Thrombocytopenic Purpura

Re: Thrombotic Thrombocytopenic Purpura

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Posted by Cheryle Tate on July 06, 2000 at 15:49:21:

In Reply to: Re: Thrombotic Thrombocytopenic Purpura posted by Stacy Horn on November 28, 1999 at 15:39:44:


I don't have TTP but my boyfriend was just diagnoised as having it. Want we don't understand is what is TTP and where does it come from. I have tried to read all the different web sites about
it but, I am not getting a clear understand at all. Can someone please e-mail back and answer my questions if you can. Thanks


: Hello

: I am 31 and am now awaiting to go into remission from my second bout of TTP. I have 3 children and I am having a very hard time recovoring. Both time I almost died. I recieved daily pherisis with 3.5 liters of ffp. I have had 32 treatment already and spent 24 days in the hospital the second time. I need to talk to other who have TTP. I am lucky and have had no kidney problems. I live in fear of this daily. Tell me about how you came about having renal faliure. I was in remission the first time for over 18 months. I desperatly want to have another baby. I am scared to death of relapsing because of pregnancy. My TTP is idiopathic...both times. Where do you live and how are you feeling. Did you ever have vinchristine? I can't wait to talk to you....if you have ICQ mail me your # and we can chat. Please respond.

: Stacy

: : : : Carla, my mother was diagnosed with TTP in November of 1998 and I would be very happy to talk with you about this and share experiences with you. You can e-mail me at [email protected] I had your e-mail address at one point, but this board has a moderator that removed your orginal message and I was unable to respond. There used to be a lot of messages of people diagnosed with TTP or relatives with TTP - but they have been removed. I can provide you with the e-mail addresses of several persons with TTP that I have corresponded with on a weekly basis. Hope to hear from you soon.
: : : : : I am 28 years old. Two years ago I was diagnosed with TTP. As a result of this disease, I had to have a kidney transplant. My transplant was successfully performed on December 1, 1998. THANK GOD!! I am looking for information regarding TTP, especially any information concerning women who have been able to have children after their initial bout with TTP has gone into remission. I am also interested in hearing from anyone who has had to have a transplant due to the TTP. So anyone out there with any information to offer, please reply. THANK YOU!!
: : : hi my mother was diagnosed last week ttp. she had no symptoms other than blod blisters on her legs and hands. doctor has put her on Prednisone and will recheck her platelet count in another week, try that 2 weeks if not he stated probably a splenectomy. she had been taking a bone density enhancer and decided to stop that as that was the only connection she could think of and hates pills anyway. any suggestions????

: : :Maureen, you do not need to let the platlet count go unchecked. My mom's platlet count plummetted in just a short period of time - the sooner they know that it is continually dropping the sooner than began plasmapheresis and presumably the less problems will occur. Sometimes a splenectomy is the only option, but I wouldn't not go that far until plasma exchanges were done to see if that would clear up the episode of TTP. I hope your Mom is being treated by a Hematologist or someone whom is very familiar with TTP. There are plenty of drugs and different types of plasma that may clear the problem up without the removal of organs. You really need to stay on top of this, we learned right off that if we didn't Mom would not have been transferred or referred to Doctors and Hospitals that avidly treat TTP. Mom is almost a year free of TTP - she was diagnosed Nov. 21, 1998 and was put on maximum life support on Nov. 26, 1998. She is doing real well now but it took a 43 day hospital stay and a $550,000.00 doctor and hospital bill before she was ready to come home. I wish your Mom the best, please let me know how she does. Best wishes, KN

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