ukadultitpregistry.com

[veronica]

Hi all, I am seventeen
I had my spenectomy on 12 november 2009 but to be honest it was't successful enough as we expected. Three days after the operation , my platelets were about 3000. A compete failyre. I took other medicine and now I am fine, I have about 370.000 platelets. I would like to say that spenectomy is essentianl and a person with itp has to do it because splene is the main place in our body where plateles are destroyed. So it has to go out because it helps us to be cured. 80 per cent of the patients are cured just after the operation , the other cotinue to have itp and their blood platelets are low(I was one of them) but the absence of the splene hels them to adjust to other trials and gives them the potential to be cured sooner contrary to those who have not done a spenectomy! Splenectomy has to be done whether is a success or not! sorry if i hav some mistakes with my english because I am greek!

[Rhiannon]

Hi there

I check in from time to time so sorry about the length of time in a reply. Seems quiet around here.

First things first, I first developed Idiopathic Thrombocytopenia Purpula back in 1994. Platelets were right down to 1 and after treatment they would raise to 2 or 3 but be down again. So after six weeks of this as an in patient they removed my spleen. Everything went well and was discharged on the promise it would never happen again.

Things went well and I forgot all about it. 18 month later or so the rash came back etc and my mum drove me upto casuality - forgetting all the instructions about contacting the specialist - after all I had been discharged then.

A week in my local hospital as the consultant was on holiday then redirected back to the county hospital and after tests the impossible seemingly happend and my spleen had grown back. That got removed and at first it seemed to no avail. For some time afterward about every 18 months there abouts they would drop to below 5. Though over the last five years or so I hadn't had anything. I may have had the odd drop but not enough to be reported.

Until this week actually because on thursday I went into A&E because whilst at voluntary work I'd gone light headed, pale and wasn't talking in full sentences. A little bit lost and having been seriously ill in the past I don't hang around wondering. When they got the results of the blood test it was 10. They called me back and it gone up to 37. I don't know what really happend that afternoon but have an appointment on monday afternoon with the consultant and may never know what happend thursday afternoon but something did.

Hang in there because it may take time to clear up. I wont promise you anything like I initially was. ITP for me is no real big deal though I don't like its uncertainty. But once its dropped below 5 I know exactly what is going to happen. It don't hurt. Sometimes am tired because it affects red blood cells but that picks up once platelets pick up. I see it better than a cold because it don't hurt like a cold is very trying.

Hope you have proper advice about how to look after yourself without a spleen though - and follow it through!

[Ann]

I hadn't seen Veronica's post before now but I would say that doctors in the UK don't believe that a splenectomy is necessary for everyone. For some it's mostly the liver doing the destroying of the platelets so removing the spleen will do no good.

Seems like you, Veronica, have found a good treatment to get such a good count. Hope it continues for you.