What if . . . .?

I have tried to avoid the “What if?” questions but with my subterranean platelets it was perhaps wise to ask ‘what if I was in an RTA or otherwise had to be tended by the emergency services and was  incapacitated  so unable to warn them of my condition?’. After all bleeding to death is not on my bucket list. Actually nothing has got on to my bucket list although I did have a mental list of things I was going to do when I retired. Can’t remember everything that was on it but we did get round to tidying out the garage a couple of months ago. It was looking good until a load of toys and urns got exiled there.

Anyway back to today’s first “What if?” question. The obvious answer is that I need a Medic-Alert device – a bracelet or necklace. So time to search on the internet. Firstly I looked at shops such as chemists to see if they had anything but disappointingly it seems that they can only be bought on-line.  I found plenty of suppliers of jewellery  which either came ready engraved with “Diabetes Type 2” or similar or where you could specify the message. I wasn’t quite ready to commit to a specific list and wasn’t sure that I wanted a metal bracelet, not being a blingy type of person (just a wedding and engagement ring).

I did try searching on ITP Medic-Alert and found a couple of interesting sites and discovered that PDSA doesn’t always stand for the Peoples Dispensary for Sick Animals. In the USA it is the Platelet Disorder Support Association. In the UK the equivalent is the ITP Support Association and they have wristbands saying “ALERT I have ITP, a bleeding disorder” so for a small donation I sent for one. I also discovered that the ITP charities use purple for their awareness campaigns and that it is a rare disease with an incidence at a similar level to Rett syndrome (which also uses purple).  So I am now officially a one in ten thousand type person (not quite as impressive as one in a million but one can’t have everything).

Other than jewellery there are Velcro wristbands with small pockets for notes and even watches which seems to be a good idea (but I’ve already got a watch so don’t need to get another one at the moment). Unfortunately the Velcro wristband has a few sharp corners (unlike my Velcro watchstrap) so looks like it will rip my sleeve to shreds.

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The next “What if?” question is ‘What if the numbers don’t go in the right direction?’. In Numbers 2 I asked “What comes next in this series 11, 10, 22, 44, 44, 30?”. The hoped for answer was something between 35 and 100. Today we got the answer – 16. Sixteen was not what we wanted and the other number  we were looking for (and which we wanted to drop) was unchanged at 68. So the steroids are not fixing the platelets and are causing problems elsewhere (blood sugar levels). The quandary – up the steroids in the hope that they might fix the platelets (unlikely since they didn’t give them any great boost to start with) but mess up everything else, or try a different approach.  Looks like we are heading for the different approach; a course of intravenous rituximab over a few weeks. Think I need a season ticket for CCHU.

Now for the final “What if?” question. Well actually I don’t have one at the moment, but I might think of one by next time.

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5 thoughts on “What if . . . .?

  1. Have you put your details in the fridge? Not quite sure how it works bur I think you put something on your door so when the ambulance men come they know to look in your fridge for a small plastic cylinder containing your life story (or maybe just a link to this blog!) Very useful if you collapse at home when alone…..so I’m told.
    Good luck mate.

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    1. I had heard about this scheme. Apparently you have a green sticker on the fridge and another near the front door (inside not outside). It was started by the Lions and the stickers can be obtained from them. Not that I am planning to collapse at home or anywhere else for that matter.

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  2. I don’t know if you are much of a mobile phone person, Tim. My apple phone has an app called “Health”.
    Once you set it up it has an “emergency” button on the login page of the phone. It can be accessed without your login. If you are involved in some incident someone can press that button to see your name, contact details of family and pertinent medical history. You choose what you put in. Some people might see it as an invasion of privacy. Obviously if someone nicks your phone they can see this info but who cares. What can they do with the information.
    What you want is that hospital staff can see it. You choose exactly what level of info to give. I have it on my phone and believe that more good will come of it than bad. Every little bit helps.
    Sorry to hear the struggle is continuing. I hope it gets sorted for you.

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      1. I have now discovered I don’t need a small child to show me the Health app, just a newer phone! So for now I shall continue to use old technology (i.e. words on a piece of paper).

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