About one year ago, it will be one year in august, I was diagnosed with ITP. That was the day my life changed a lot more than I thought it would or ever possibly could.
I was suddenly extremely sick with an upper respiratory infection, coughing up blood, and hocking back blood as well. I was absolutely covered in bruises. This wasn't too unusual considering I've always been much more pale than almost anyone else. But this bruising was different. I was also covered in petechiae and didn't understand why. My bleeding was also getting worse. I had figured that it was from being on the pill on and off for a while.
I had never had my blood drawn prior to this event and had always been terrified of needles. Honestly, I still get pretty upset when they have to draw my blood and can't stand looking even in the general direction of the nurse. I had also never needed to go to the hospital for anything except a cat scan as a kid from falling.
Within the last year I have been hospitalized twice due to my ITP acting up. The first time I went into the hospital my count was 2,000. The second time I went it was 5,000. My mother being a registered nurse, and a bit tight near the pocketbook, decided that I was only to go to the doctor when my symptoms told me that my count was low. Needless to say, my doctor wanted to strangle me for not coming in for a follow-up after my first hospitalization, and I've had to get my blood drawn once a week for the past month. I've also been tapering down from a high dosage of Prendisone since June 16th or so.
Lately I've been doing alright. I've had to drop out of college due to financial issues. I was trying to get my bachelor's in culinary management. I do not let my illness suppress my dreams. Even though working in a kitchen has the capability of being very dangerous to someone with ITP, I refuse to stop what I love doing, I just know how careful I truly have to be. I also know that I have to stop smoking eventually to keep myself as healthy as possible. What I don't know is if I'll ever actually be able to want to do it, in order to be successful in quitting. I also fear the prospect of a splenectomy.
Honestly I'm scared out of my mind as far as ITP goes. I know that I can't let the fear control my life and the things that I do. The thing is, that's very difficult. The prendisone is one of the things that bothers me most. I hate the breakouts, the migraines, the aches, the fatigue, the heartburn, and the changes in my mood. There aren't a lot of opportunities to talk to anyone who would come close to understanding any of what I'm going through. Hopefully someone reading this could. Part of me just needs to know that I'm not alone, even if, in retrospect, that's a terrible thing to want. I wouldn't wish any of this upon anyone.
Adrianne, you are not alone!!! ITP was scarey for me for the first few years also. Try not to let it stress you out. In my opinion, prolonged stress can affect ones body in many ways and I believe this stress can affect Platelets in some people. Keep that thought of not letting this suppress your life/dreams. That is a good attitude to have!! We all pretty much know when something is not right and feel the need to have a Platelet check. Some wait for symptoms to show others go by physical feeling. For me I did not have visible stmptoms, I went in depending how I felt physically. Understand what you are going through.
It would probably help to stop smoking.
Sorry to hear you had to drop out of college. Is it due to ITP related finances?
it has been 3 years alreay since my knowledge of my ITP. it took a year but everything is back to normal and on 10-29-12 i gave blood so that i can help somone in the same condition i was in or worse. it is just a good deed that paid off in the short run.
Thank you received: 3
i have dealt with ITP for last 3 years. even though it has gotten easier and just after a years i was cleared i still get scared. we put our dreams on hold and we reach them but not just when we would like. i was a freshmen in high school when mine hit and it hit me hard. i went through plenty of hardships, treatments, and struggles. now 2 years after i was cured life is still not back to normal but what is normal in the long run.
Your not ALONE!!! I feel so much better reading this knowing that there are other kids my age with ITP.
I'm Savannah Johnson & I have had ITP for 14 years now.
When I was five I had a terrible virus, this virus affected me differently than my brother and mom. Afterwards I had t-ball practice, I lightly picked the ball up from the ground & the next day I was black-and-blue with bruises. I also had petechiae. During this first episode my platelets dropped down to 3. My ITP is different from most. 80% of people have one episode and never have to deal with it again, however; I am the other 20%.
Most of my life my ITP has been manageable, until my junior & senior year of high school. Most of my episodes (when i did have them) would only be a few months of low platelets and then I would get better. But not this time I have had low platelets for two years and its still going. This year my platelets dropped down to 12. This was the first time I had been on prednisone, since my first episode. I HATE Prednisone, the side-effects are horrible; the headaches, insomnia, mood swings, weight gain, can't have foods high in sodium content, etc. I was accepted to four major universities, had scholarship money to these schools; but chose to go to community college because of ITP. Now my hematologist is talking about different treatment options that a 19-year-old shouldn't even have to worry about. So I may try the natural doc. route.
So just stay optimistic, things do get better. My mom did research and some lady in Canada was cured of ITP due to a vitamin D deficiency, it would be wonderful if I could be cured from something this simple. I hope this helps I know it helps me reading other people's comments knowing that there is someone else who can relate to what is going on.
I guess you could say that i am the other 20% to, my body had turned itself around came back within just a few months. And then same thing happened about a year later (this year), it had turned itself around and then came right back and currently my levels are at 5.
Each day i come on here an dthink about this disease but when i get home from school and im judt doing what i normally do i dont ever really think about it, unless i start bleeding or something like that happens.
Is that odd or is that a good thing that i dont stress about it all the time every day. ?
I was never really into sports which is a good thing now i guess; I did gymnastics for about 7 years like 7 years ago, but now my body is so fragile and weak i cant even think about getting back into it like i wish i could.
I like how i can relate to every single person on here but everyones got there own story and there own life and problems to worry about.
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