Not super scared, but slightly frustrated.

Last year, on April 15th, I was hospitalized with a really bad case of vaginal bleeding, low platelets (37,000) and 7 of hemoglobin. After a few days of my doctors thinking that my plts were low because of the bleeding, they realized that it was backwards, I was bleeding because of my plts. I was diagnosed with ITP after all the tests were done, treated and finally stopped bleeding after 19 days.

So I've been lurking around this site for a year and never realized how much it helps to have a place where there are other people dealing with the disease, until now.

I'm currently back at the hospital with a count of 2,000. 2,000! And it feels surreal because the lowest I've been aware of having my plts has been 20,000. Of course I knew this was a possibility thanks to all of you who have shared your stories with us, but I really never expected this.

I've been tapering down from Pred and now I know that even though I respond to it -managed to have a count of around 100 with 10mg- as soon as I hit 5 mg, my count drops like crazy. Just never this low.

And to top it all off, I'm supposed on go on a cruise next Sunday. We'll see about that.

I've been started on Solumedrol and with doctor wants to transfuse plts before trying IVig -the reason for my frustration, because I'm not going to the OR or anything, but what can you do when you live in a country like this.

But just wanted to said that all of this has helped me to be calmed. Thank you.

Oh I hate to see that you are in the hospital! Hopefully, those platelets will rise in time for your cruise! Since you respond so well to prednisone, couldn't you just take it each day on your cruise temporarily and then find a more long term treatment option after your vacation? Rest up and stay positive! You can always "lurk" as you say, these boards and find some more answers! Good luck!

Natalie

Thanks for your wishes, Natalie.

I was already planning on going up the Pred until my next appointment with my Hema, after I get out of here. Luckily, I don't usually bleed, not trough my gums or nostrils and this time I have very little petachiae and just one bruise because I'v been doing mega doses of vitamins C and D3 and that seems to help with the bruising.

Hopefully, I'll get to go on my cruise!

Hi Jey---
Most docs don't transfuse platelets because they're 'eaten' up just as fast as your own, and can lead to complications themselves.

But your story sounds very familiar--the same thing happened to my 14 year old daughter in 2001, only she had to have surgery to stop the bleeding, as well as 2 units of whole blood (she'd lost alot on her extended, very heavy menstrual cycle). This was our initiation into ITP, and she was diagnosed at 2K. :dry:

Steroids are something you apparently respond to, so at least you have something quick to save your vacation! Maybe the Solumedrol will make the IVIg and platelets a moot point. Nice you haven't had to treat until now, but what timing! :blink:

Hopefully, you'll respond quickly and be by Sunday! Ann, Caitlin's (23) Mom

Ann,

Mine was a very short account of my diagnosis episode as I call it. I was indeed operated to stop the bleeding, but it wasn't successful. Had 12 units of red blood cells. It was crazy. But I can't imagine your daughter going through.

Although, I've always have had trouble, I have POS, I'm 35 and have a daughter. Fourteen is so young.

I know what you say about the platelets transfusion, but I live in Puerto Rico and medicine is slightly behind down here, if you know what I mean. Hopefully, like you say it would be unnecessary.

Hi there you sound just like me . I had the same case scenerio had a bad period was at 6,000 and rush to emergency room. Was given platelets transfusion , steriods, gamma, that was three week ago. I left with 60,000 than the next appt 25,000 than 14,000. Up 60 mg of steriods went to 60,000 again. than 40mg of steriods back to 30,000 . Now 58,000 so go figure whats next week count is. We all are experiencing the same stuff. Think positive its hard at times but we have to. Good luck hopefully u get to your cruise! Liz