Chris Hart – His ITP Story

Hi my name is Chris Hart. I am 66 years old currently living in retirement in Cornwall. My story starts back in 1995 when I noticed my body was covered in bruises and blood spots, a day later I had started to bleed from my gums and nose. My wife took me to our local hospital where they gave me blood tests and told me my platelet count was 1. The Dr’s then took a bone marrow sample from my sternum to check for leukaemia this showed a healthy production of platelets. 

After numerous people coming in to look and take photos for the records (there apparently there had never been anyone with a platelet level of 1 in the hospital) by this time my mouth was covered in blood blisters. The decision was taken to give me high dose steroids and admit me to the ward. After four days of steroids my count was still 1. They then decided as the steroids had no effect they needed to give me plasma this was administered via a cannula over 5 days one bag per day. This seemed to have the desired effect and my levels increased to double figures I think high 30’s.

On the 10th day I was discharged from hospital having been told by the Dr they think it was ITP the I then being idiopathic and if it happens again like this get yourself to hospital. The downside of the steroids was it induced diabetes which I have had ever since.
In the following years on many occasions I would bruise easily or suddenly see blood spots on my arms or legs but didn’t do anything about it as it wasn’t as bad as that first time and usually disappeared after a few days

Roll on to June 2022 I awoke to find my body again covered in bruises and blood spots, I had a blood test at my local surgery and within 12 hours had a call to get down here asap. My platelet count was 3 The haematology dept had contacted my GP and told him to give me steroids immediately I explained last time 27 years ago they had no effect but he said this is what he had been told to do and I was to report there in the morning unless I felt I needed to go to A&E if I had any bleeds.

That night I started to bleed in my mouth so got my wife to drive me to hospital after a wait of an hour I was seen by a triage nurse who I saw googling ITP. I was then fast tracked onto a day ward where my bloods were cross checked for a plasma infusion. Just as the plasma was being set up a Dr and nurse from the haematology dept came rushing in explaining we don’t do this anymore we look to treat the cause not the symptoms. I spent a few hours whilst more bloods where taken they came back with platelet level at 1. I was given a course of Eltrombopag and sent home to come back two days later. These drugs were giving me horrible side effects, nausea, dizziness, itchy skin and fatigue. On returning for my next appointment my level was still 1 they wanted to up the dose but I said I wasn’t happy to do that so the suggestion was to try an injection Nplate (romiplostim) this was given on Fri 24th June, it’s now Sun 26th June and I’m sitting writing this hoping my levels go up on this drug.
The one positive out of all this is that there is much more knowledge and options available than being left for 27 years with no support even though it shows on my medical records from 1995.