hospitalized again and feeling confused

I'm new to itp, well its new to me at least, and I just got out of the hospital 8 days ago and now I'm back again. I went for my first apt with the hemo today and my labs said that my count is at 6 (8 days ago it was at 95) and so he said I had to be readmitted. I'm receiving ivig. They were going to give it last time but decided not to. I'm just wondering what is next. I feel like the drs and the hemo don't know what they're doing bc they arnt familiar. I haven't met the hemo yet. He didn't even see me. He just made the nurse send me to the ER. I'm so fustrated and confused. Please offer me advice and tell me if this is normal for them to do this. Is this disease ever going to calm down? My first count the first time I was admitted was 1 and now its back down to 6 in 8 days. I just want it to be over and I barely got ITP. How do u guys do it?

Destiny
I am new to ITP too. I have to say it is not fun. But when I was DX my counts were at 8000 and they did not put me in the hospital. I was sent home with high dose of steroids. I do not know anything about ivig because I have never had it but usually a hematologist starts with steroids. I hopw your counts come up. I am praying for you,

My counts lately have been all over they came up to 200000 on steroids then 5 weeks later were at 11000 soooo I was put back on them for a week and they are up to 66000 today. Maybe they will come up more. But if there is anything I have learned the last few months is that if you let it this will drive you batty.

Educate yourself on all treatments and procedures and be your own advocate.

I wish you luck and know that everyone on here cares!
Shannon

Well I read about the standard protocall and I guess they are doing things right. I'm just so fustrated I'm back in the hospital after I just got out. I knew i'd probably be back but not so soon. Its my sons 3rd birthday this month and I just want to be home with my children and husband. I don't know if this hemotologist (that I have yet to meet) is very experienced with this disease or if he has other patients with ITP but I just wish I had some control over my situation. They had me on dexamethasone and it was working but it made me short of breath and made my heart beat harder (not faster just like I felt it beating throughout my body, hard to explain) so the dr I had originally (not a hemo) said to stop taking it bc I was going to see the hemo a few days later, but then my count crashed so here I am.I hope u can follow what I'm explaining:blush: how do I know if I can trust the hemo (when I finally meet him) to know what he's doing? How do I know he has some experience with this? Am I just worrying too much?

Hi, Destiny. Pretty name, that's my niece's name, too.

Ok, first of all, take a deep breath. Yes, it does get better.

I have never let ITP frustrate me, I got it, now I have to live with it. I was down to 3 once and never landed in the hospital. Every doctor is different just like every one of us is different.

You'll probably get lots of encouraging replies. Your best defense is to read all you can and get yourself educated. Hopefully, when you finally meet your hema, he'll be one who will listen to you. Think positive and relax.

Destiny:

I think the hardest part for any of us was feeling like we lost control. I felt that way when my hemo dictated the treatments (which I hated), but being new, you don't know any different. Once you learn more, you can become an active part of the decisions. If you have a doctor that won't allow that, find a new one. You have to live your life and live in that body, so you should be able to make suggestions regarding what you treat with.

How are your symptoms? All doctors are different. I was never hospitalized either and was working with counts under 5. I had bruises and petechiae, but no bleeding. I'd question being hospitalized by a doctor who hasn't even examined you. It isn't always necessary. However, certainly it won't hurt.

It is trial and error to find a treatment that works for you and the side effects are not always pleasant. Steroids can make your heart beat faster, among other things. For now, you have to just take one day at a time. It does get better...for some reason, there is a sense of panic at first with most patients. Things will simmer down.

How do you live with it? It can take a while to accept, but once you do, you'll do okay. In time you realize it's not the worst thing that can happen and you just fit it in to your life. There are remissions, so hopefully you can achieve that soon. Most people do. If not, they manage to find something that will keep their counts at a safe level (20 to 30) and go on. There are so many more options available now than there used to be.

Well now I know why I got hospitalized. They said that bc I just moved to a new county and my insurance is still being transfered they weren't able to take me in the clinic and so bc she wanted to give me IVIG they could only achieve that by hospitalization which my insuance covers. Next time I hopefully won't go through this. I didn't meet the hematologist I thought I was going to. I met his partner instead and she was very nice. She made me feel better. I realize that I'm lucky I didn't get a much worse disease, but I'm still not happy about ITP either. I guess I'll feel better when my insurance and dr can work together so I don't have to get hospitalized. My count has gone up to 23 from one round of IVIG and now I'm doing 3 more rounds over the next few days and I'm back on decadone. I guess I just have to get use to living with ITP and accepting it as a new way of life. Thank you for your advice and encouragement. Its great to hear others experience and get advice from people who have been where I am.