Thursday, 3 October 2019


Minimal invasive phentotyping of arrhythmia in idiopathic pulmonary arterial hypertension

Quite a mouthful for sure but I am so proud to be able to say that I have had this fitted and there are many ready and waiting to to have theirs done go so before long we will see more and more people joining this study. I know Mandy Vickers is waiting for hers as is Andy Sweeney. Just let me tell you a little about how easy this was.

I met Alex and Jen in the coffee bar of the hospital where we discussed life in general etc and we moved down to the bowels of the hospital when the room for the procedure was ready for us.  All was so smooth.  I signed the consent forms and I was told how inserting this device would be carried out.  The device is small and slender and very neat.  About the length of an aaa battery.  I was given a  device to hold and feel it etc and was amazed that this would be capable of teaching our pah specialists so much about our hearts whilst struggling to live as normal a life as possible with pah.   

Jen explained that she would use a scalpel to cut a hole in my skin and then something she called a push to make a hole large enough to take this device.  Once the hole was made she would then push through the monitor and then stitch or use sterra strips to close the insertion hole and all would be well.  She also said a sheet would be used to prevent me from seeing what was going on. I asked if I could see as things like this fascinate me.  Jen was a little wary until she asked Alex if he thought I would be ok and he said I would be fine watching it.  I have always enjoyed watching things on he monitors like the cardioMNEMS and the insertion of my hickman life etc. 

All  that was to no avail though as once i was laying dow with the blood pressure and ecg monitors going and I was covered on the site with sterile sheeting it was impossible for me to watch anyway.  I could not see at that angle.  However Jen was great and showed me the scalpel she would be using and the pusher etc to form the hole.  All was well.  An injection to numb the site that I did not feel at all and away we went.  Once I was sheeted and numbed the procedure took about two  minutes and it was done!  Last thing was some sterra strips to bond the site back together and a dressing that will stay on for a week  Up and dressed again it was back out to see the monitor that will sit at the side of my bed to take readings and send them off to be checked and monitored.

The other device I have will go on a lanyard around my neck and under my jumpers etc and be used if I am out and have any problems, palpitations etc.  I will just press it to my device and then let the team know of any concerns.  So with that and my cardioMEMS machine I am truly computerised at last. I have a card  to carry with me saying what has been fitted and can be shown at airports etc as it will set off a monitor or hospital admissions and so on. This was such an easy procedure to have for such an important device.

This study will go on for three years.  After that though it will be possible to remove the device it is highly likely that most will just leave it be where it is. After all the skin and muscle will grow around it and it will take more time to remove it than it did to put it in.  It will not cause any harm so I for one will just leave well alone after the study finishes.  If anyone is having it done and wants to ask me any more questions then please do not hesitate.  

We discussed the cardioMEMS and all agreed it was time to up my game a little now and take more readings daily so they could see my pressures at different times. They are also looking forward to seeing my readings once I am off the airplane when we go on holiday to see any changes in lung pressures. Alex fancies doing a study on the effects of air travel and ipah patients.  Thus will give him some insight.  

Fox Watch

Our lawn has grown really well since Colin spent his six hours patching up the mess after one of them thought it would be fun to make so many holes and pull up strips of the newly laid grass.  We were fortunate we had some rolls left and once all was back together we did take a couple of the rolls and lay them on top of my new and unused raised bed.  There it has taken really well so if we have any more problems we will at least have some decent bits to patch a little of it.  So far one fox has a been captured but we still see a few each night and cannot resist doing a bit of fox watching.  We do not mind them coming in as long as they do no damage. Our fences will be going up in the next week or two and they are too high for them to climb over so maybe all will be well.  Time will tell.  I suppose at least if they are busy round by us they are leaving the sheep alone etc.  The sheep are only a field or two away and I do worry about them when they are carrying their lambs.  Anyway the garden is fine but it does need dead heading and yet unless I use planks I cannot stand on the lawn yet so it will have to wait.  It is all knitting together nicely now and already growing down into the soil below to form a solid mass. This too will hopefully stop the foxes playing with the turf.  We shall see.

Going against my better judgement

For me I love school uniforms as the children cannot try to outdo one another with the latest trendy pieces of clothing or the designer gear some like to show off with. I have never believed small children should be dressed in designer gear - this is a personal thing and I do not intend to get at anyone who thinks differently but small children are not in clothes long enough to warrant the high price tag in my humble opinion.  

Every year we have enjoyed buying our grandchildren the school coats.  I actually look forward to getting the winter ones and seeing them set off to school all warm and cosy.  The parents appreciate this small gesture and I enjoy looking at all the different styles etc.  We like to get them something functional but nice too and not boring. This has never been an issue until this year and Izzy.  She is quite tall so we like her coat to be long enough to keep her warm, not one to just below the waist as too cold on the horrible cold mornings.  Well she has just turned nine so I bought her a decent coat for aged 9/10 thinking it would be fine.  No a bit of it.  The cut was so wrong she looked so frumpy in it and though she said it was fine it clearly was not and her mom and Colin both agreed with me too.  

Off I went to exchange it. Though it only cost £38 I still wanted it to look right so I looked for one aged 10/11 only to be told they did no do that size. They did all the rest but that size most manufacturers did not do as they felt 9/10 and 11/12 covered it all.  WRONG!!!!  I wanted a 10/11. I went to numerous shops and was shocked to be told the very same thing.  I rang Colin in desperation and told him how poorly I felt with the stress and was going to go against my principles and buy a designer coat aged 11/12 just cos the 9/10 clearly would not do and the store I bought the original one did not have that size in the same coat. Well the designer coat  I reluctantly bought her when we tried it on her fit great except for the sleeves which were way too long.  This one was a Jasper Conran coat and once again Izzy said it would do!!! Well it would not do at all so back to the drawing board.  I haver at last found another coat and this one is actually for a ten year old so maybe it will do but heck - it rankles buying a child a Ted Baker coat.  I so resent this but what option do  have, she is just at the in between stage they do not cater for.  So Saturday will see us all set off to Leeds and to the shop where I ordered the coat in. If this one does not fit then I have no clue what else to do.  I have tried supermarkets , M & S and all the other big stores plus Next etc.  I will give in and hand the task over to her mom if Saturday does not go down well.  If it does fit though I swear this will be the last designer coat I will ever buy for a child.  To me the price tag does not match the coat and she will not get any more use or wear out of it than the £38 coat I wanted her to have.  So wish me well for Saturday, make or break time. 

Such a small thing to take so long

AT LAST!!!!!  For a year now we have been promising to get some of those felt protectors for the bottom of our dining room chairs. Oh the grating we have had to endure every time we pulled out a chair over our porcelain tiles. It has been awful and set my teeth on edge. We kept on saying we really needed something on the legs of the chairs to stop it but time and time again we forgot  Today we had a few minutes to spare before leaving for the hospital so we used the time very wisely in my eyes and we bought some of those felt things that just stick to the bottom of the chair legs.  What a difference this cheap fix makes.  A year we endured the noise and a £3.49 fix has sorted it - its the little things!!!

Winter is really setting in

I can tell this as we have for the first time since we met each other bought a new duvet of a different tog rating.  We always liked just a 4 1/2 winter through to summer, it was always fine, we were always snug and warm. This year though for some unknown reason I have felt just not quite warm enough in bed.  Off I went and bought a size 7 tog rating, high enough for us and it does the job well.  I am now feeling warm enough without over heating and without all the weight of a heavy duvet on top of me. It has brought it home to me though how the weather is changing and the lovely warm balmy days we enjoyed so much this year have gone.  The leaves are all falling off the trees and the last of my apples have now been picked and waiting for us to devour them.  The last of the strawberries need picking and a few odd tomatoes and that is it for this year.  Time to batten down the hatches for the weather ahead. 

The good news is though that we will be spending some part of winter in Spain so we are really looking forward to that. Already we are planning barbecues and lazy nights listening to the waves lapping on the shore whilst we catch up with good friends.  Lucy and her hubby will once again move in here for maybe the last time as her baby is due in January. We will miss her so much. She is looking for a bigger place as her flat does not allow babies. I hope they find one close by.  

Well Colin is out - pint night - a once a month thing with my daughters fiancĂ©, Colin and his son and another lovely guy who is friends with all of them.  They go to a local pub so no need for cars though in fairness they drink shandy mostly so they could get away with going further should they wish.   This is my night to be totally lazy and quiet as no interruptions of my favourite tv channels.  So I will leave you all now and tomorrow when I see Colin I will get him to take some pictures of the new piece of equipment now in my chest wall.!  

Now going to do a bit of fox watching before my tv programme comes on.  

I wish you all well and send you my best wishes and hope you all stay as well as you can.

Love as always

Carole  xxx

1 comment:

  1. A great read, as usual. Thank you for insightful commentary, especilly about the equipment. xoxo