Angela Smith – An ITP Journey

My first encounter with ITP was in 1997.  I was in Northern India with my husband at the time, our travels there were adventurous and filled with the unexpected, so a few bruises didn’t really make a big impact.  It was only on the flight home when I found I had mouth blisters and realised the extent of my bruising that I knew something was seriously wrong.   Spending just enough time at home to have a bath, I presented myself to my local A and E.  I was dismayed when they didn’t hesitate to admit me, apparently my platelets were undetectable and my iron levels extremely low. It took a few days for a diagnosis and I was referred to as “this week’s interesting case”. It was suggested that the condition had been triggered by quinine based anti-malarials.

There followed a year of intermittent transfusions and treatments with Prednisolone.  Each time my platelets were raised to a satisfactory level the improvement lasted about three weeks, then my platelets would plummet to below five again.  Then suddenly, they went up and stayed up and I was able to discontinue all treatment. At that point I imagined I was cured, that was the end of ITP for me!

Not so!  Fast forward to 2004, six years later.  Suddenly I noticed the tell-tale rash on my legs.  I have no idea of the cause of my relapse.  Could it have been that it was around the time my husband was diagnosed with cancer?  I would be interested to know if a diagnosis has ever been related to stress.  So, I was again having Prednisolone and again each time when it was decreased my platelets dropped.  Eventually the platelets stayed up and I appeared to be in remission once more.  I can’t quite remember the exact timing, but this lasted for two or three years.  Then the platelets were down again and this time nothing seemed to help for very long.  At one time I experienced being an inpatient in a Spanish hospital which was interesting, the care was excellent.

The ITP came and went for several years and at one point I had a course of Rituximab, which had no effect.  Splenectomy had been mentioned to me several times, but I had always rejected it, thinking it too drastic.  However, in 2011 I finally made the decision.  I had a transfusion before the operation, which was done by “keyhole surgery”.  I was in hospital for three days and was fully recovered in about two weeks.  No ill effects, but I do keep a supply of penicillin in case I feel I am starting with a severe infection.

Now after ten years, aged 77, my platelets are still checked annually, and my last count was a wonderful 210.  For me, splenectomy was the answer and I know how very fortunate I have been.  It is not unknown, I think, for a relapse to occur after splenectomy but, so far, so good and I’m incredibly thankful for all the excellent care I’ve had from the NHS, not forgetting the very helpful ITP Support Assoc.