Skip to main content

Early Diagnosis Saves Lives

When I was first diagnosed with TTP I was told that any subsequent episode would be like walking down a hill.  With regular Adamts 13 blood checks there is a safety net, but it’s background, it doesn’t show up in routine tests.  Although a full relapse does, you really don't want to wait that long.   Even with a diagnosis, if you begin to feel unwell, it’s important to be tested early rather than sit and worry, or brush it under the carpet. 


It seems to me, and I might be wrong, that many people’s Adamts13, slip rather than walk.   Of course, we are all different and we all get colds, tummy upsets etc, and you have to be realistic that we are not immune from more ordinary things.  I was also told that any headache that wasn’t relieved by paracetamol needs listening to.   If it really does feel like more then we do need a blood test for reassurance if nothing else.


I’ve had a busy time recently.  This weekend we’ve been away camping again, just for one night.   We spent a day at the races, not a regular occurrence for us, but a new experience.  Not a bad one, the horses were just beautiful, although I do like to stay the other side of fence.   I’ve had a cough, and a cold, and I’m feeling shattered.  Today is a lazy day, not a day in bed, that’s not my way, but another rest day of taking things easy.   But I am confident that any feelings of tiredness are down to my body just needing a rest.  And the reassuring fact that my Adamts 13 was high just a month ago.  I'm enormously grateful for the care given to me.


I know that some will say I bang on about TTP, and I've had people unfriend me on Facebook.   It doesn't bother me.  I admit I'm happier writing here, rather than constantly pushing it under friends' noses, but my real friends support me and know why I do it.   Early diagnosis saves lives!


Sadly people do die when TTP is not recognised early enough for emergency medical treatment to begin.  I've been told that in the past patients have been turned away from emergency rooms because their symptoms have been mistaken for drunkenness.   Others have received incorrect treatment or no treatment at all while investigation takes place.  Early diagnosis saves lives!  I will continue to say this.


TTP Network for info


My mindfulness photo from this trip away is two Peahens with their chicks.  Such a surprise,  and a first for me.  The chicks appear to be very young.  New life, always a joy and a leveller 🥰.  


Hope you all find your mindfulness moment today.  Be kind and listen to others.   Life can be fragile.   ðŸ˜˜


Comments

Popular posts from this blog

10th Dec 2024, Trees

There's something about trees that is ultra calming.  Just looking them, but walking through them is just amazing.   They are timeless.   When family come to stay we always walk in the woods.  It's something everyone should do, I recommend it for exercise and wellbeing. At this time of year, many people are thinking about trees.  Our Christmas Tree has been decorated since 2nd Dec, and it certainly helps brighten our home during this darkest month when the daylight is at its shortage.  Our tree is artificial, we've had it for years.  It's carefully packed away each January and reassembled at the beginning of December.  It's decorated with ornaments collected over the years, gifts from friends and family, near and afar, and souvenirs from our holidays  We love our tree 😊. Trees come in all sizes 😊 Another favourite tree in our garden is our Acer.  It's beautiful all through the year, especially autumn, ...

31st October 2024, I'm A Halloween Grinch 🎃

I don't like Halloween.   It's origins or the 21st Century version. Right from it's beginnings it has been about death and spirits of the dead.  I always say I'm not superstitious,  but somethings shouldn't be messed with.  Halloween, or All Hallows Eve, has been turned from a Celtic tradition to ward off evil and spirits, to a commercial nightmare.  I know that many will say that nowadays it's just a bit of fun, but like my fear of spiders, its maybe instinct.  Maybe its the near death experiences that TTP survivors have, a little too close to home. Winter in this part of the world brings darkness and cold, something that the Celtic people took seriously.   If any misfortune befell them in the winter, they likely didn't survive.  For a while the Christian form of All Hallows Eve became a time when the poorest folk would beg at more wealthy folk’s doors for food, in return for offering prayers.  Now children are encouraged to trick ...

21st October 2024, Newcastle, Gateshead, Angel of the North

This weekend away was not my choice but my husband's.   To be fair I've had my weekends away and it was his turn.   Of course,  it involved football.   BHA v Newcastle.  It's on his list of dreams.  What would my grandfather,  a supporter,  think of us flying to Newcastle to watch a match? We flew with Easyjet, cabin bags under our seats, and limited amount of cloths.  I've never travelled for a weekend before knowing that I would need to wash undies.  My meds (not TTP related) took up more space than my toiletries!   We arrived exhausted, but driving would have been so much worse. We ignored our own travel tip and landed after sunset.  It's disorienting to land in the dark when you have no idea where you are.  Flight delayed at both ends, we took the Metro from the airport to the city centre, it was delayed en route, and then we left the station by the wrong exit.  It resulted in us walking more t...