Lost in a sea of information! Please help!

Greetings all! I am desperate for some clear information. I was admitted to the hospital last Friday with a 0 count (after a gp quack told me the rash on my legs was an allergy - I insisted on a blood test and here I am). I've been here for a week and am on prednisone (sp?) and done 5 days of ivig. As of today my count is 38 and they are talking about letting me finally leave tomorrow or the next day.

I understand that everyone is different but what seems to be the way this plays out? It seems like alot of people end up admitted pretty often? Does it tend to be multiple rounds of ivig and other drugs or does yanking the spleen come up pretty quickly?

Not to sound clueless - but how much does this really impact daily living? I coach soccer for little kids, ride a motorcycle, basically I play hard - do I have to worry every time I get a bump or bruise? After an ultrasound they said my spleen is at the max side of normal- not quite sure what that means, an indicator that it needs to go? Or just that it has filled itself up on all the platelets?

I'm asking questions but my doctor keeps telling me he wants to focus one day at a time and we'll get to all the nuts and bolts once I'm discharged. Any information will be greatly appreciated.

Lisa, do you have a hematologist, one who is familiar with ITP? That's first priority.

Then, do you have any bleeding symptoms? Blood blisters in your mouth, bleeding gums, worst stuff?

There is a sea of information and the very best of it is this website and this discussion board. Start reading! You'll get lots of answers here.
Erica

Lisa:

Yes, number one rule - everyone is different. No, I wouldn't say that people are admitted often. Usually people are admitted the first time their counts are low, if they have an inexperienced hemo or if their symptoms are severe (uncontrollable bloody noses, blood in urine, etc). I've had counts of 3 and still went to work. Counts above 20 to 30 are considered safe counts for normal, every day living.

The way that it impacts daily living varies. I wasn't physically active, so it didn't really impact mine in that sense. I found it difficult to work with side effects of steroids, but got through it. Basically, if you find a treatment that gets your counts up to a safe level, you can be as active as you want to be. If not, you have to curb your activities to what your counts allow. No, you don't have to worry every time you get a bump or bruise, but you do have to be careful of head injuries and such.

Some doctors push for splenectomy fairly soon, but since ITP can resolve on it's own once in a while within the first year, that is sometimes a very premature suggestion. Some people consider it a last resort and after you do some research, you will come to your own conclusion about that.

Lisa - please read the first post in this section about the top 10 advice. It is so true and will really help you begin your ITP journey.

Thanks for moving that post to the top w a thumbtack, sandi! It's such a good one and helpful to re read again and again. I think I need to print it!

And stuck it will stay! Many thanks to Steve for taking the time to write it. He is one wise friend of mine! I really miss his input, BTW!

Thank you all for all the information. I started reading and just felt so overwhelmed!

I've been held in the hospital for another day - this time due to Atrial Fibrillation and uncontrolled heart rate on top of everything else. Has anoyone dealt with a similar situation?

I'm really really really struggling with the prednisone - I cry when someone walks into a room. I cried when they finally pulled one of the iv tubes out. I cry when people leave. I spent alot of time losing meals over the last 2 days. I'm sore, tired and just plain cranky.

Thanks again to everyone for making me feel that I'm not alone.

Lisa

Yeah, Prednisone will cause crying alright. Been there! In time you will see that your crying jags can be humorous. Try not to take yourself too seriously for now and keep repeating "It's just the drug, it's just the drug..." I have quite a few stories that I can crack up over now. If I think of it tomorrow, I'll post some to try to cheer you up!

I find that it's important to let yourself cry when you need to, even if it's just the meds. Sandi is right - eventually you get sort of used to it and know thats what it is. Prednisone would sometimes make me cry (especially between the 10-5 mg taper), but on high doses really made me get angry! I had to be careful driving.

But as time goes on, maybe you will come to appreciate some of the side effects, like always keeping busy and feeling the need to clean everything!

Hang in there - son you'll get that line it and it will be the best feeling ever.

Line out - stupid iPad.

OMG! I am not alone on the busy and cleaning thing! yeah!

My house was never so clean as when I when I was on pred. Maybe I ought to take a quick blast of it in order to do a spring clean.. haha.

Lisa, I also remember having a ridiculous heart rate on occasions. It would wake me at night and I'd sit and wonder whether I ought to go to hospital. I never did but my heart rate would thump it out so fast I could barely count it for an hour or so and then calm down. I hope you're better now.

Thanks for all the replies! I'm so tired - I can only wish for these energy bursts! I also have A-FIB and a major GI issue. The cardiologist doesn't want to talk to me until my numbers hit "normal" and the Gastro guy says the same thing. I just feel like I'm in a holding pattern.

Thanks again everyone!