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Recent Entries

Post 46 - By: Shanna Maness - Post Date: 9/9/2011
I am a 35 year old female who was always very healthy until I was diagnosed with TTP in July of 2009. I was 8 months pregnant and my placenta abrubted about 5:00 am at 9:30 am I had an emergency C section and by 3:30 in the after noon my kidneys a liver were both failing. I dont have much memory of the first 3 weeks. I know that I started dialysis that night around 9 pm. I had dialysis and Plasma Pherisis daily for several weeks. When my counts all returned somewhat normal I was released from the hospital. I take medication daily for extremely high bp (this started with TTP).I also take meds for problems with my stomach. I have had gullbladder removed, Nisan wrap(sp) (to stop constint vomitting) ERCP with stint placement in the pancreatic duct and MRCP now the stint has been removed and I still show signs that my stomach is still not digestung properly(This all started with TTP also).I have had a hard time with my memory since then, wear down and get tierd very easy and have joint pain that gets very severe. The last few weeks my memory loss is getting much worse, somedays I cant remember in the afternoon what has gone on in the morning. I have to write my days down to be able to recall what I have done. I am having a very hard time with speech. I will think I am saying something and my husband will look at me like Im crazy b/c my words were jumbled. I even write our type the same way. This is getting much worse and very fast.I am having trouble with my vision, again each symptom started with the TTP and has only gotten worse.I dont have a Dr. that follows my TTP. I actually moved about 1 1/2 yrs ago and have just been sent from one specialist to another for different surgeries or procedures ( for GI promlems). I have even been sent out of state to see a certain dr. for GI procedures. My questions are is this normal at all after TTP. I have had blood work done that always shows anemia sometimes abnormal liver enzymes ect. What kind of Dr. do I need to look for? Or is this just normal? I have tried to keep as much of this to myself as I could so that I dont worry my family. Things are just to the point that I need some kind of answers. Any Information would be very appreciated.
Post 47 - By: Charlotte Maher - Post Date: 9/8/2011
I am interested in finding alternative treatments with less side effects as Prednisone. I am 24 years old and was diagnosed with ITP 3 years ago. Upon the initial diagnosis, my platelets were at 50k and I began a 60mg dosage and was weaned off within 6 weeks time. It seemed to work. The ITP did not return for a couple months, and I then became pregnant with my son. My entire pregnancy went well and my platelets held in normal range. After giving birth in Dec. of 2009, I had some complications with a hematoma from birth and my hemoglobin levels dropped (6 weeks after delivery) resulting in a heavy bleeding incident in which I had to go to the hospital. Since then (around Feb 2010) I have been on Prednisone for ITP every other month with my platelets plummeting to 5k-6k each occurance. I do not feel young anymore, I hate feeling sick or not well all the time and I believe Prednisone has a lot to do with that. Im still young, I have a son, I just want to feel normal again.
Post 48 - By: Glenna Bays - Post Date: 8/12/2011
I want to first of all thank all of the people in this article, those writing it. I suffered with TTP around 2006, although I had some of the same symptoms, mine was a result of taking Plavix. I was scared, several people around me with TTP died, there was an article in the Columbus Dispatch about a 16 yr. old girl who died from it. And I truly thought I'd die too! I thank Dr. Chiciak, and workers from the Red Cross, Mt. Carmel 2nd flr. outpt IV staff for their help and support!! I only lost my spleen, not my life!!! Keep up the good work!!! Also my daughter Desiree for taking care of me when I couldn't!!!
Post 49 - By: Tammy Long - Post Date: 7/10/2011
I had a massive stroke Sept 2010 I then became very ill almost close to death in Oct2010. One minute the er Dr. was discharging me home the next minute i was put into ICU next day i was transerred to Indianapolis for about a month. I live in pain and fear. I have TTP. I cant find anyone in indiana with a support group. Nobody told us when my mother was diagnosed and died after diagnosed with vwd. Is there any support groups in this area?
Post 50 - By: Kathy Munger - Post Date: 6/20/2011
My daughter is now 23 years old, and has had a low platelet count since birth. She started out in her early years with 20,30,even as high as 40 thousand platelets, and now as she has gotten older her platelets seem to stay very low, between 5 - 10 thousand. She's had bone marrow aspirations to determine if her marrow was producing platelets and they are. Treatments they've tried are platelet transfusion,prednisone,chemo therapy for 4 weeks, the transfusion with 10 different donors would incease platelets by 20000, bringing them to a total of 30000 but after 8hrs, they'd drop back to the usual 10000. Prednisone same thing, and the chemo therapy didn't work. She's working and living on her own now, but I have noticed that everytime I call her she's sleeping, I'm concerned because she is at that child bearing age and I'm a worrid mom. She even had the ivig treatment you refer to and on my way home , 30 minutes after the treatment she complained of a vise sqeezing her head, the worst headache she had ever experienced. She is a very rare case because I've never met or spoken to anyone who was born with this and would still have it at age 23, unheard of and doctors are puzzled. She's seen several different specialists, and for lack of a better term they call it ITP, but it doesn't follow all of the signs of ITP. She had a great pediatrition that noticed petechia on her back before she was discharged from the hospital. Perhaps others have had it since birth but no one picked up on it. I had a c-section with her and so the petechia was not related to trauma from birth. Any thoughts on this. I'm sure she would love to have children someday but without a way to increase and keep the count up to a satisfactory level I don't see how it's possible without risking her life. If you can think of anything she hasn't done or know of someone who has had it since birth and is now cured please email me with this info. Thank you for listening. Concerned Mom, Tampa,Fl

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