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Conditions and Diseases > Spleen Forum > Thrombocytopenia & low platelets + gamma treatment +spleenectomy
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Q: Thrombocytopenia & low platelets + gamma treatment +spleenectomy
asked by: leslieh on November 16th, 2007
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Crying or Very sad hi my name is leslie i'm 16 years old and live in texas. i have been dealing with thrombocytopenia since february of this year and i have went through many treatments and have had surgery already to try and fix the problem. since february 4th (at this time my platelets went down to a 1,000 )of this year i have been getting gamma treatments in a nearby hospital almost every 2 to 3 weeks . after having to get so many frequent treatments my doctors decided to go ahead with the spleen removal and see if i would be in the 80% that spleenectomy usually works on . well after getting the surgery my platelets shot up to around 600,000 i was so relieved i actually thought it cleared well about a week later my platelets had already dropped to 12,000. it had started back up again but it wasn't my spleen causing it . the doctors ran test on my liver and checked for a smaller spleen the surgeon could of missed. there was nothing , the doctors told me maybe it was a phase that it would take about a year to clear up all the way. but ever since then my platelets have been droppin more and more every treatment this past treatment my platelets actually went down to zero. i was scared for my life. my platelets never go over 50,000 unless right after a gamma treatment. but now the treatments are lasting less and less. the treatments also leave me with ugly side affects such a vomiting migranes and weakness. i just got out of the hospital last week and they went up to 170,000 and in 7 days they are down to 1,000 again. this disorder has ruined my life i used to be a powerlifter and also involved in track i got to hang out with my friends and now its like im on a leash always getting held back from something. now i can't lift because of the straining part of powerlifting and i can't do track because of my fluctuations so much. i miss so much school i have teachers working with me, but they can only help me for so long. im a straight a and b student but its hard not knowing everything when you have serious tests to do. i just want some answers of any kind i want a answer or a consideration to look into something else please if anyone has answers please reply it would be greatly appreciated.

thanks, leslie
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ramdesi
replied on January 21st, 2008
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Hi
I really feel for you. My mother is suffering from ITP. All I can say is I will pray Sai for you
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ramdesi
replied on January 21st, 2008
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Hi
I really feel for you. My mother is suffering from ITP. All I can say is I will pray Sai for your recovery.
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leslieh
replied on January 26th, 2008
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hi
sorry about your mother. stay strong. thanks so much. i will pray also.
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snazzaro
replied on February 2nd, 2008
New User
hope things are going better for you. Have your doctors thought about plasma exchanges? I was diagnosed with TTP in July 07 and had plasma exchanges for nearly 4 months. I have been free of treatments and medications for nearly 3 months! I went into the hospital with platelets of 25,000. It was the scariest time of my life. I really do feel for you.
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macgregor
replied on November 14th, 2008
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ITP
Leslie, I am so sorry to hear that you are having to deal with ITP at such a young age. It's a hassle at age 73, but not fair that a 16-year old should have to deal with it. Sound like you have had a hard time with thrombocytopenia.

In April 2008, I was diagnosed with CLL (chronic lymphocytic leukemia) when my platelet count was 7,000, and I had extensive bruises over all my body. I was given platelet transfusions, whole blood transfusion, put on 60 mg of prednisone daily. I got off the prednisone 3 months ago. I had 4 treatments of Rituxan (intravenous). With frequent CBC blood tests since April, my platelet counts have ranged from a high of 160,000 (one week) down to the present 42,000.

Today I saw a new doctor, who has given my malady the new name of ITP (immune thrombocytopenic purpura). He proposes to give me a single dose of WinRho, an intravenous of immunoglobulin, to raise my platelet count, so that he can do surgery to remove my spleen (spleenectomy). He says that will solve my problem of low platelets. I plan to do lots of research on the internet before agreeing to surgery.

I was disappointed to read that having your spleen removed did not solve your problems and that you have had bad side effects from your treatments. I would like to hear more from you, and others who are dealing with similar problems.
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BKW
replied on May 15th, 2009
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ITP
Hi Leslie: I was just diagnosed with ITP on April 11th, 2009. I went into Acute Care with blood running out of my mouth from brushing my teeth and blood under most of my skin. They rushed me to the hospital with a count of 3,000. I was so scared being diagnosed with something I never heard of in my life and such a weird thing that won't reverse itself. I could only think of my three children I have let to raise and a husband that was more frightened than I was. In my hospital stay I was given a platelet transfusion in which I reacted horribly so they won't do those anymore. I was also put on Prednisone and the gamma treatments. The Prednisone did nothing and the gamma treatments would only raise my count slightly. I was put on a higher level of steroid which had horrible side effects and I think I got every single one of them. My doctor suggested doing the Rituxin and in the first week my platelet level went from 32,000 to 338,000. I just did my second treatment today with two left. I pray my levels will remain high and I won't have to think any longer about having my spleen removed.

Your message is quite old so I hope everything is going well with you today.
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