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Spleen Removed 10 days Ago 11 years 9 months ago #3695

  • Beth
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I was diagnosed with ITP in January. I went to my regular doctor for a regular check up and got a call that my platelets were at 19,000. I saw my hemotologist who put me on steroids which were slowly lowered. I HATE EVERYTHING ABOUT STEROIDS...constant shaking inside, sleeplessness, toes and hands cramping, rashes, constant hunger, weight gain and puffy face, etc. My doctor and I discussed all the options.. I thoroughly researched all the treatments and I decided to go for having my spleen removed. I had my immunizations and met with my surgeon who stated my platelets must be at 50,000 for her to be comfortable about surgery. My counts had dropped to 55,000 so it was either go back on steroids and start infusions or take out my spleen. On day 4 after my spleenectomy, my count was up to 203,000. I have been visiting this site since being diaganosed, reading the posts and learning. The strange thing is, my older sister was diagnosed with "TTP" (a far worse condition - it caused her to have a stroke and a heart attack) at the exact age (month and year) that I was diagnosed with ITP. (She fought TTP for 3 years and no longer has it.) Our grandfather died in 1991 of what the doctors said was something "like" leukemia. He had been receiving chemo which didn't help. We think he had ITP. We also have a niece that was diagnosed at the age of 2 with ITP. She was placed on steroids and never has had it return. I was wondering if anyone has had relatives diagnosed? I think this website in invaluable. There is so much understanding and information here. I know my numbers might go down, but they might stay up. I'm still doing weekly blood draws so we'll see.

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3697

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Hi Beth. My sister had ITP in 1983. She went into remission after a year and has not had a recurrance. I was diagnosed with ITP in 1998. I've been in remission for 6 years - my last treatment was Rituxan, although I have been on Prednisone in varying doses since then for Lupus. TTP is vrey scary - I'm glad your sister is doing well.

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3698

  • farida
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sandi do you have time to be on the chat room for not more than 5 minuts please

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3699

  • Beth
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When I was told to go see a hemotologist, I immediately made an appointment with the doctor my sister sees. I feel like he saved her life when other professionals had no idea what was wrong with her. So, he immediately does all the testing and was very surprised at my ITP (not TTP). Is there a connection to ITP and Lupus? I know one of the first things my doc said to me was "you don't have cancer and you don't have Lupus." That was when I was still in the "diagnosis fog." What exactly is Lupus?

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3701

  • Ann
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Lupus is another autoimmune disorder which sometimes has ITP as a part of it.

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3702

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
ITP was my first Lupus symptom. I wsn't diagnosed with Lupus until 8 years after I was diagnosed with ITP. ITP produces antibodies that attack platelets and Lupus produces atibodies that can attack organs such as kidneys, lungs, heart, etc. Lupus can also cause a lot of inflammtion in joints and muscles.

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3703

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Farida - ha - I can't remember how to get there. I don't have time right now, maybe I can meet you later?

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3707

  • rere
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Good luck Beth I hope your platelets stay high.

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Re: Spleen Removed 10 days Ago 11 years 9 months ago #3731

  • tortie
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Good Luck Beth. I'll be hoping for the best counts for you. I have my surgery next Friday. Tick, tick, tick.........

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Re: Spleen Removed 10 days Ago 11 years 8 months ago #3735

  • Beth
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Thanks y'all. I'm feeling pretty good. I have a great doctor who has spent many hours with me answering questions and let me decide what course of treatment I wanted. At 59, I decided to go with the odds and remove my spleen. I get my numbers checked tomorrow. I've been coming to this site for 3 months just reading the entries. I also have a dear friend who had ITP some years back, had her spleen removed and has been in remission ever since. She kept telling me, "Just do it." One thing I've learned thru all of this (sitting in a hemotologist/oncologist office on a weekly basis) there are a lot of people far worse off than I am. The courage I have witnessed is amazing. My doc has a big sign that says "Attitude is everything." When I would get really down, feeling sorry for myself, I would think of that sign and those amazing people. Without knowing it, you all have helped me choose what options are right for me. I have no idea what my future has in store but I just say, "Bring it on!" Life's a roller coaster ride and I'm going to continue enjoying it. Thanks so much!

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Re:Spleen Removed 10 days Ago 11 years 8 months ago #3807

  • plopper
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On the topic of does it run in families. I was dxed in 1990, my uncle in 1998, and my other uncle in 2008, so it does seem to run in our family, on my mom's side.

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Re: Spleen Removed 10 days Ago 11 years 8 months ago #3812

  • Beth
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Torite, good luck on your surgery! My numbers today were 290...12 days after surgery. My only advice I would offer is don't take the pain medication unless you really need it. My hospital immediately handed me a button to push and told me to push it all I wanted. I told them no thank you I won't be using it. I had my gall bladder removed sometime back and it was too late before I realized what I was taking. It makes you goofy,slows down recovery time and really doesn't help the pain, just makes you sleep. All I needed was a couple of EX tylenol. I was walking around the halls that afternoon and I was up and dressed on day 4. The four incisions tend to be on the waist line so something loose is best. Of course, you probably know all this but good luck and let me hear.

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