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 46 - By: melissa angermeier - Post Date: 3/24/2011|
|My mother passed away last week from TTP. I wished that there was more of an awareness of this disease. I never knew it existed. She had all the signs and the hospital still turned her away....Where can I get more information on this disease?
|Post 47 - By: Emily - Post Date: 3/22/2011|
|I have been receiving plasma exchange since dec 4 2010- I have yet to go into remission and I am 2 weeks post rutixmab infusions- TTP has certainly changed my life- I went from being a healthy young woman to now not knowing if I will survive my next acute episode- I am still doing exchanges every other day and praying hard over the weekend hoping I do not start feeling "bad" and my platlets drop- as when this happens I begin with vomiting, severe HA, full body aches that feel like they go to the bone, my eyesight gets blurry and ect. - I finally have a GREAT hemalogist that is really looking after me- I have gone through hell and have had days that I thought I was going to die and felt like it too- spending hours in an ER in pain and to weak to open my eyes, lab results that would shock the most practiced physicians- platlets of 4, ldh > 1200, hemaglobin of 6, bilirubin 7, and cardiac enzymes greater than an active MI, and be refused pain medicine bc "this disease shouldn't cause pain" as
I have been told when I feel like my body is cramping, my head is going to blow off, abd pain so bad I don't want to move and nausea with vomiting that just won't stop- this disease seems to affect everyone different and I pray that someday everyone can be "fixed" and given back the quality of life they deserve. As for me, I am being told that I have an atypical form of TTP with normal ADAMS TS 13- no familial hx, and no known possible cause- with each episode it is begining to take longer for the exchange to stop the hemolysis and stop my platlets from falling- 4 months ago I thought that I had a kidney stone and some virus, I was just hoping to pass a stone and get through 4 days of a bad virus, little did I know I would be fighting for my life over the next months- god bless all and thankyou to the medical staff that continues to research this disease!
|Post 48 - By: Andrea Willy - Post Date: 3/17/2011|
|What are the benefits of IVIG and TTP? Does IVIG have longer remission effects? Can IVIG be used during pregnancy? My ADAMTS13 has been <5 since I was diagnosed with TTP and only rose to 7 since I was in remission would IVIG be something that could help me? My TTP is active again and have been receiving plasma exchange and am looking for more options.
|Post 49 - By: Andrea Willy - Post Date: 3/17/2011|
|My AdamTS13 has never been above 7. I was diagnosed with TTP May 10, 2010 and relapsed March 3, 2011, during that time my AdamTS13 has never risen above 7. I have read that there are abnormally low levels but would like to know what that actually means. Does a treatment like the Retuximab help with this? I was trying to conceive when I relapsed and am scared how this would impact my body, and future baby. All information is appreciated!
|Post 50 - By: patrick - Post Date: 3/13/2011|
|Thank you for the information and patient perspective on TTP. My wife was diagnosed three weeks ago. To compound the condition, she has had MS for the last 24 years. While undergoing treatment she has had at least one TIA event,had her body reject plasmapheresis, and contracted pneumonia. She has been a challenge to the team at Presbyterian/St. Lukes here in Denver. The knowledge shared is invaluable and I believe I know what to expect in the short and long term. Thank you again.
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