We have created this Guestbook to allow our website visitors to ask questions and express their opinions. These comments are a valuable source of information about platelet disorders. We may respond to some of the inquiries when it is appropriate, but we will not respond to most questions or comments. The Guestbook cannot be a source for medical advice; patients must get their medical advice from their doctor.
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|Post 96 - By: Lisa Sponcel - Post Date: 10/24/2010|
|I live in Southern Indiana and had Ecoli 157, now have kidney failure and am on dialysis; and secondary TTP-HUS. I would like any information/connections to other doctors specializing in the TTP-HUS syndrome that I could possibly go to for follow-up. Thank you.
|Post 97 - By: Katherine - Post Date: 10/24/2010|
|I am diagnosed withthrombocytopenia in pregnancy; platelets dropped from 140 to 124 by week 30, keep checkin every 2 weeks. Any advise? I do not want to take Prednisone. Thank you.
|Post 98 - By: Gary Urednick - Post Date: 10/20/2010|
|My youngest son, Blake, has the genetic form of TTP. He received Retuxin during his last visit to Riley Children's Hospital in Indianapolis, IN, and has been in remission for the past 14 months. His latest blood tests show that he is relapsing again. Is there anything known that might help surpress the TTP for a longer period of time?
|Post 99 - By: Angela - Post Date: 10/7/2010|
|Thanks for this site as have been searching for online resources.
I was diagnosed with TTP on 9/10/2010 but was only in the hospital for 5 days, 3 of them including plasma exchange (and 2 bags of blood and 2 high doses of prednisone "just in case"). Unlike many others, I did not have any illness, headaches or general malaise prior to being diagnosed. The only reason I went in was due to lots of bruising, purpura on my feet and legs and cloudy, dark urine. I found out my platelets were down to 5k along with Hemolytic Anemia, high LD, etc and I would have to start plasma transfusions. Considering I had never been hospitalized, I was scared to death!
Thankfully my counts all reacted very well to the plasma exchange treatments. All of my counts were essentially normal after 3 treatments with my platelets actually overshooting the high end of normal (they were ~636k when I was discharged).
The results of my first ADAMTS13 tests using blood from when I was first admitted have shown that I likely have an increased chance for recurrence: ADAMTS13 activity <5.
I was going on twice/wk for blood counts and now down to once/wk. My hematologist will be sending out for another ADAMSTS13 test in about 6 wks so I guess I'll just wait on see....
Pretty nervous though!
|Post 100 - By: Lisa Randle - Post Date: 10/6/2010|
|Do some of your research patients have nerve damage to their legs? I have TTP diagnosed in June 2010 and now I have Polyneuropathy.
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