We all know Anthony Heard and appreciate all that he does for his fellow ITPers through the ITP Foundation in the UK. But have you heard or read about his introduction to ITP?
Here is your chance to read his fascinating story...
My adventures with ITP started on Friday July 28th 2006. That date is etched into my memory as my life changed dramatically from that day.Probably like many other ITP sufferers I had never before had any serious illness, andcertainly nothing more than the usual wear and tear we all experience in our lives.
I had reached the ripe old age of 45 relatively unscathed.The diagnosis of ITP was a complete shock, although on reflection I had probably been suffering from the condition for about a year . I had been reluctant to report mysterious bruises that I had been getting on my arms, legs and torso to my GP because I simply put them down to my usual clumsiness. I had no idea that they could be anything serious. At no stage have I had any other symptoms like bleeding from the nose, gums or in the bathroom.
What actually made me visit my GP on that fateful day of July 28th was that I had been feeling very tired, run down and lethargic. As soon as my GP saw the bruising on my arms and legs I could see her visible concern and she took me straight through to have a blood test. She gave me no indication of what the problem might be but admitted that it could be serious. At 5pm she telephoned me to confirm that my platelet count was 4 and that I must report to the Royal Berkshire Hospital, A and E without delay.
After about 4 hours of tests at A and E , ITP was diagnosed and I was prescribed 100 mg of Prednisolone and 20 mg of Omeprazole. I was given detailed information by A and E about the possible side effects of the steroid but nothing prepared me for just how sleepless the nights would be, how hungry I would always be and how wildly my moods would swing.
On meeting my specialist the next week I was thankful that my platelet count had responded well and was up to 75 . I was kept on a reducing steroid dosage for 3 months and told to carry on as normal. I managed to carry out my normal work duties and as I was only 1 year into a 3 year Open University BA degree, I simply carried on. The challenge of my degree and the daily routine of work took my mind away from the unpleasant side effects of the steroids. Studying helped to fill the wee small hours and was actually quite productive.
The positive response that I had to steroids saw me taken off Prednisolone by November 2006 but like so many other sufferers by February 2007 my platelet levels had fallen back to 10 . At this stage no alternative treatments were suggested and I was put back onto 60 mg of Prednisolone and 20 mg of Omeprazole . Once again my system responded well and the vital number went up from 10 to 78 within a week but 4 months after withdrawal of the steroid the platelet levels collapsed again.
This pattern was repeated in 2008 and 2009, so that overall I had 4 attempts at steroids, which always gave the same short term response but had no impact in solving the underlying problem. In 2008 I was introduced to Azithioprine but within 2 hours of taking a dosage of 10 mg , I was violently sick, dizzy, feverish and probably the most unwell I have ever been. So until August 2010 my life became 3 months on Prednisolone, Omeprazole and Alendronic acid, then 4/5 months off and so on. As an added Christmas bonus in December 2009, I contracted shingles, which really has been the gift that just keeps on giving as even now I am still itching to stop itching.
In June 2010 my specialist and I agreed that we had to break the steroid cycle. By this time I had managed to understand a bit more about ITP. I had finally accepted that I would control it and it would not control me. It had to be ITP POSITIVE and not positively ITP. Anyway I was given Rituximab treatment in July 2010. The 4 treatments lasted about 6 hours each, albeit the first was 8hours. The worst part of the Rituximab treatment was having a bone marrow biopsy beforehand. I can only describe the biopsy as the most painful experience of my life.
I responded very well and very quickly to Rituximab, my platelet count has stayed over 100 ever since August 2010. The most recent count was 153 a month ago. I have not taken any medication at all since September 2010 and I hope that I can be steroid free for a good while yet. Having said that I realise that as usual with anything ITP related, the only thing that is definite is that NOTHING IS DEFINITE.
I have come to view my ITP experience as a positive one. I would not vote for it if it were standing for election BUT I have learned so much about myself, my wonderful wife and family and the generosity of other people as a result of my illness. It has absolutely changed my life.
I am ITP positive, I have completed my BA Open University degree with it and I will continue to enjoy my life. The phrase Carry on Regardless springs to mind but perhaps it should be Carry on Platelets.
Finally my best wishes and thoughts go to all those fellow ITP sufferers who have taken the time to read my story. I am eternally grateful that my response to the treatments I have had has been positive. I can only conclude by saying.....
My name is Anthony Heard
I am 51 years old and I am ITP POSITIVE !
Contact email Anthony@itpsupport.org.uk
TWITTER @ITPSupportAssoc orTWITTER @AnthonyH7