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 131 - By: Gwen Blankenship - Post Date: 1/7/2010|
|I look forward to Jan. 21st in Columbus, Ohio @ the Ohio State University. I emailed you in 2000 concerning my 1st TTP episode. You gave to me great in sight concerning my condition and this disease. I am now a patient of Doc. Sperio Cataland. Thank you for the work all of you do. I will see at the 2nd reunion. Gwen Blankenship
|Post 132 - By: Cheryl - Post Date: 1/6/2010|
|My husband was diagnosed with TTP in Jan 08. He has the Adamst13 deficiency. He has psoriosis, diabetes, and a small blockage in his heart. He was treated with approximately 35 plasma exchanges from Jan-May 08. He has had three strokes since Oct. 08 with the most recent one in Nov. 09. Neither his hematologist or neurologist is sure of the cause of the strokes. We are still looking for answers and would like to communicate with others with this disease. Thanks for this site.
|Post 133 - By: Tracy Hilburn - Post Date: 12/31/2009|
|one of our neighbors was recently diagnosed with this condition. I'm reading to find out more about it. Looks to be a pretty serious condition.
|Post 134 - By: Susan Richardson - Post Date: 12/26/2009|
|My mother was diagnosed with TTP/HUS Sept. 3. She had renal failure, high LDH, low platelet count. She began daily plasmapheresis and dialysis 3 days after hospitalization. She began to improve after 2 weeks but developed complications after a central line was placed. She was transfused and her platelet count dropped. Cryo plasma was used without success. Rituximab treatment used along with daily plasmapheresis without success. A splenectomy was performed 6 weeks after diagnosis. Her platelet count was 17,000 at the time of surgery. An auxilary spleen was found and she began to show signs of improvement. Platelet counts continued to drop after splenectomy and a final Rituximab therapy was tried in addition to cyclosporine. 2 weeks after her splenectomy she went into Heparin induced thrombocytopenia and was rushed back into surgery. She began to slowly improve and was no longer receiving plasmapheresis. She was transferred to rehab. After 2 weeks in rehab, she became unresponsive. An MRI and EEG were performed which didn't indicate a stroke. She was checked by her hematologist after receiving phone calls from her family. She was diagnosed with cyclosporine toxicity and cyclosporine treatment was stopped. She was released from the hospital 2 days before Thanksgiving. Her prednisone is down to 10 mg. and must receive dialysis 3 times per week. She is now using a cane and continues to improve. We are hoping for a return of renal function or a kidney transplant. Remember, as long as there is breath in your body there is always hope.
|Post 135 - By: Jenny - Post Date: 12/24/2009|
|My brother passed away on 12 Dec 09 of TTP and he also had pneumonia and Acute Respiratory Distress Syndrome. His BP was to low to do the plasma exchange.Prior to him becoming ill on the 29th of Nov he was a very healthy 60 year old man with no medical problems. He NEVER drank alcohol, smoked or used any drugs.He ate well and exercised dily. For him to become so ill and die so quickly was such a shock and very devastating.
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