Newly Diagnosed

Morning all

I hope you dont mind me posting my story.. I know Im no diferent from anyone else who has ITP but Im scared and just want to talk to someone who can relate to this.

My story starts back in February last year. I was 5 months pregnant and went for my routine bloods. I had a phone call the followinbg morning saying that my platelets were low at 45 and that I had to return to speak to a consultant. My consultant explained all about ITP in pregnancy and that it was very common. He told me that there was a small risk of this crossing over to the baby but that was very rare. Once id given birth he reasured me that my platelets would return to the normal levels. To be honest, i wasnt really worried at all as all the doctors I spoke to said it would be fine. Anyway, I had regular weekly blood tests for the remainder of my pregnancy.. they never went under 40. As a precaution, I was told I couldnt have an assisted birth and no epidural. Anyway, on 13th June 09 my baby girl was delivered via an emergency csection. She had a blood test as soon as she was born. Two hrs later, at 4am in the morning all doctors rushed in to my ward and took her to special care. Turns out my antibodies had crossed over and her platelets were 4. She was given emergency transfusions and came out with the horrible rash.To try and cut a long story short this went on for a month. Thank god all the scans came back clear. She was discharged a month later and only had to go back in on one other occasion for a transfusion.

My bloods returned to the normal level all most immediately as predicted.

Now 3 wks ago, in the space of 24hrs, I came out in over 50 bruises. My monthly period that normally lasts 4 days was still going strong 3wks in. I went to the doctors who gave me a bloodtest. He called me the following morning to tell me that my platelets were 9. He had spoken to the consultant hematologist who had advised him to start me off on 60mg of prednisolone and made me an appointmet to see him the following Tuesday. When I went to see him the following week my platelets were the same level. He then upped my dosage to 80mg. I went back this week and theyve now dropped to 5. He wants to give me another week on this higher dose to see if it works and mentioned that I may have to go in for transfusions next week.

I hate these steroids. How they make me feel and Im already starting to put weight on. They are obviously not working. From anyone elses experience, if you dont respond to the steroids will they take me off them? I really would prefer that. It seems pointless taking them if theyre having no effect.

My hemo also mentioned about having my spleen out. A couple of years ago that wouldnt have phased me. Ive always been a firm believer of whats meant to happen will happen but since Ive had my little girl it puts a whole new emphasis on things. I know the chances of anything happening are very slim and youll probably think Im being silly but Im scared of something happening to me and leaving her without a mum..

Anyway, Ive bored you enough now. I just feel really alone. My other half has been brilliant but I dont think he understands just how low I feel. I just wanted the chance to speak to others with the same condition.

Look forward to getting to know others and reading your stories

Lindsey x

Lindsey great story and I understand your concern. The steriods did nothing for me either, you will have to continue to take then anyway because they have to be tapered down. Plain and simple they S**K. Your hemo shouldn't just jump to spleen removal immediately there are other effective treatments to try. If he keeps insisting find another hemo, because removal of the spleen isn't always effective either and there are problems that can occur with it's removal. As for the boring story, talk all you want that's what this group is for. Got concerns or questions post away thats what it's there for. Your not alone we all understand. take care Rodger

Lindsey,

So sorry you have to deal with this crap, especially since you just had your baby! Everything you talked about made since to me and we can all relate to your story. I am so glad your little one is OK. Now, let's focus on getting you better! As you said, a splenectomy can be risky, but nowadays they do the surgery laparoscopically (sp.) and it really isn't too bad. I haven't had my spleen out, but many people on here have opted for that. Keep in mind, having your spleen removed does not always fix the ITP problem. Many people will go into a remission for a while, but occasionally the ITP will resurface. With the spleen removed, they have a harder time finding other treatment options. My biggest concern for you wouldn't be the surgical part (if you went through childbirth with low platelets, a laparoscopic splenectomy should be a walk in the park)but the exposure part. As you know, the spleen is responsible for a portion of our immune system, in that it helps keep you healthy. Without it, you are more susceptible to common viruses, colds, etc. With that new baby, it may not be your best bet yet. You could get sick easily and pass that on to her and vice versa. I agree with Rodger, if that is the only method your dr. is pushing, find a new hemotologist. There are several different options out there. Also, in regards to the steroids, they are horrible and I think it's safe to say that everyone here on the forum HATES them. Give them time, though, they may raise your count slowly. They probably won't let you just "go off of them" because steroids must be tapered off slowly. I also don't really understand the transfusion part of your post. Your hemo wants to give you a transfusion? Usually we don't get transfusions unless we are actively bleeding and in desperate need of more platelets. Usually, if you were to receive a transfusion, your antibodies would more than likely attach onto those platelets too and mark them for destruction, thus making the transfusion a mute point. Has your dr. considered IVIG or talked to you about it? Many people on here have tried that for a "quick fix" to get their numbers up in order to buy them more time to consider more permanent options. Read up on the different treatments on the forum. We have all tried different things and we have all had successes with different forms of treatment. We are here to support you! Your story was not boring...just all too familiar to us. Ask anything you want! Good luck and enjoy your new daughter!
Natalie

Hi lindsey, Congratulations on your baby! I think your heama is rushing it, you've just had a baby, your body and hormones are in shock, it seems quite common for people just had babies to have ITP but once their bodies calm down hopefully it will turn itself around. If not there are lots of other treatments out there, id try them before rushing into spleenectomy. Good luck hun
Julia

Thankyou all so much for your replys. Its so good to know there are people here I can talk to.

Im going to read up on all the different treatments and talk to my hemo about it next Tuesday.

Thank you again and look forward to talking to you soon xx

Hi Lindsey. I think everything has already been covered by everyone else but I wanted to say hi and let you know that we never get bored with stories! We all take comfort in knowing there are other people out there who can relate to what we're going through. Can't wait to hear what the doc says next week.

Thank you. Your right, it is comforting knowing you can share this with others.

Look forward to hearing what the doc says too... hopefully be some good news