10 Years of Living with TTP

I've said before that I won't go too deeply into my own TTP treatment experience.  Anyone reading this who has experienced TTP will already know what it's like, and I don't believe that anyone who hasn't experienced it for themselves can be expected to understand.  

10 years ago I was transfered to a main TTP treatment hospital,  now called a Specialist Centre.  At the time I didn't know what TTP was or how it was treated.   I felt like a lab rat.  It seemed as if everything was being thrown at me.  And maybe it was.  There were days of Plasmapheresis and steroids before being given a new drug at the time, Retuximab.  I believe it was ground breaking and not available to everyone. I remember Plasmaphereis Nurses coming daily to my bedside and then as I improved being transferred daily to the Blood Donation Centre for plasmaphereis.  There was a heat wave and the air conditioning just didn't cope, patients' families were bringing in fans, when they could get them.  There was a shortage apparently of fans nationwide. 

Much has changed in 10 years, let alone the 100 years since TTP was first recognised.  There is another new drug, Caplacizumab, now.   

So here I am, 10 years on!  Back in 2013 I didn't expect to leave hospital, let alone live life again.  It changes your perspective.  I no longer feel the need for possessions,  its enough to go for a walk, to spend time with family and friends.   Don't get me wrong,  I like nice things, but I'm happy to buy just what I need and I dont hoard or have collections.   The idea of shopping as a form of therapy has gone.

It's more than 10 years since I had a full time job.  I gave that up before TTP.  10 years to recover and be in a much better place.  10 years that the government expected me to continue working (it is annoying that I'm still waiting for my state pension!).  10 years of living my life with a degree of anxiety. 

Today is blood test day and I'm calm.  A few butterflies but under control.   10 years ago I had to put earphones in and listen to soothing music just to sit in a waitingroom.   I had a real panic attack the first time, following my stay in hospital.  I've come such a long way, and I really want those following me to know that they can make the journey too.  

My blood is not taken locally because it has to make its own journey.   Some of it is sent on to the Specialist Centre where the all important Adamts 13 Enzyme is tested.  That's not a quick test.  If anything the hardest part is waiting between the blood being taken and getting the results,  it's days and sometimes more than a week.  When your Adamts 13 is high that's fine, when you know its sinking it is more worrying.  But the safety net is there.  Adamts 13 falls before platelets,  but its not a standard test.  Blood tests are all important.  

So the deed is done, and it's waiting time.  One day there will be a test that gives instant results, of that I'm sure.  In the meantime, we get tested, we wait, we watch for signs, and we live.

Early diagnosis saves lives!

TTP Network

Updated to say that my Adamts13 levels are all good!  🥳