TURNING INTO LIVING COMPUTER ALL FOR PAH

Another research study

This study involves placing a insertable cardiac rhythm monitor under the skin near to my heart.  The device is small, less than 1 centimetre in size. The purpose of this study is to assess the nature and burden of abnormal heart rhythms in patients with PAH

As those of you suffering this awful disease knows we often get palpitations or odd things happening with our hearts.  Most of you will have been given the ECG monitor at your local doctor that is kept on for up to 72 hours.  This new study will be able to monitor any abnormal beat for the length of the study.  The study lasts for three years.  With this, along with my cardioMERMS the specialist will be able to learn so much more about PAH affects us.  I am hoping to have this procedure, which is nothing of a job it seems quite soon. All approvals are now in place so  am just wait for the call.  It does not involve a stay in the hospital other than a short rest after this is in place.  I will have a small device that I can place on my key ring which I place over my heart when I feel odd things going on.  As well as that a larger piece of equipment, though not huge will sit on my bedside cabinet and in the night will take off all the data gathered to be assessed.  I will not feel anything and actually it will likely collect data when I am asleep.

I feel blessed to help in studies this way as I - along with you all want to further the studies into this rare and little known disease. One day we will beat it, that day comes ever closer.

My watch - which also is logged to Sheffield has stopped showing its face to me, though they can still see how many steps, heart rate etc.  To this end a new one is being sent out from Apple and I will at last be able to see the time!

Trial

There is also a trial I am hoping to be able to get on but the truth is I know very little about it at this moment. My specialist is looking into it for me to see if I am eligible to be on it.  I believe I would   have been able to normally but the problem is as my pressures are measured daily they are quite dramatic in the ups and downs. It may well be that one day my pressures are too low, the next day too high! So though there is all the good that comes with having my pressures monitored daily the downside could be that I miss out on the trial that just may be the cure!

I have been waiting with bated breath for the trial from Papworth, the one which Nick Morell is playing a big part. Sadly I was told it is still way off. It might even be up to two years away yet so we will just have to be patient and all try to join any other trial we can get onto as one of them might be the eureka moment we are all praying for.  In the meantime we must all live our lives to the best of our ability and enjoy each day as it comes.

My normal ph appointment

This time I had the great pleasure of meeting for the first time another ph patient called Nigel Wilson.   What a lovely guy and it was such a pleasure to have a natter to him about his journey through these ph roads. Nigel also suffers from schleriderma ( feel sure I will have spelt this wrongly) In between both of us having our ecg's, shuttle test, bloods and seeing our doctor we never stopped talking!  It is always  pleasure to see a facebook friend in the flesh and this was no exception. Sadly Nigel was in the middle of his shuttle when I left so Nigel  hope all went well. 

My shuttle was hampered by this silly machine they now put round our necks to measure oxygen.  I never minded the one round our wrist and then fastened to our finger.  It was not intrusive and we just did the best we could. With this contraption they now use it was a nightmare.  Every move I made the silly thing bounced around from aide to side, banging into my arm or hands. It was not nice so after a while I said I just could not cope with it and was told to stop.  I could have done more on the shuttle but for this so was very disappointed indeed. I wish they could go back to the older method.  

It was a coincidence as the doctor I saw here was the same one I had seen the day before in a different clinic at Sheffield. This did mean that she already knew most of the things she was to ask me so it did mean our meeting was quite short. I think it had been  27 hours since I last saw her. This particular doctor is very heavily involved in the heart thing I am to have inserted so we had already dealt with all of this.  

Progress

At last our lawn is to be laid on Saturday.  I am so excited as it seems we have been in limbo with it for so long, though the reality is we wanted it right and it takes time to lay a really good lawn and to get all the prep done correctly first. The final count of crocus bulbs laid now is 360 of varying kinds so we should have a lovely display come the spring time, though quite how many are left depends on how hungry the squirrels are and they are foraging for food  now for winter.  I already saw a few had been dug up by the holes they left behind.  Lots of tulips have been planted in the beds now too, again all varieties so another thing to look forward to. I always plan ahead as I like to have something to reach for, some goal.

Our paths are all indian stone and we needed to protect if from dirty feet, frost etc.  This involved cleaning it all well and painting each slab twice with a sort of paint that seals the slabs.  I did do some of it on my own a week or two ago but the rain came down after two hours.  It must not be allowed to get wet within six hours so that was a wasted effort and a waste of money. This time Colin and I did it together working as a team.  As I could actually sit down on the slabs while doing this it was not as bad a task as I thought it would be.  The good thing is that now even the old slabs that once laid had been walked along by many builders in their muddy boots etc is now as clean and nice looking as the new ones laid recently. I have filled some big pots and laid them at the back of the house and they look really nice so all in all things are moving on very well.

I went to our local nursery as they are in the middle of being taken over.  So many plants were reduced and I was able to procure two clematis reduced from £20 each ( I never would have paid so much, they would have been overpriced down to £1 each. I also bought plants for some tubs and some winter cabbages.  

Colin is painting our bin store today. It has needed to be painted and shelves put in for so long but is low priority.  It will look nice when finished and I will be able to use it to clear some of the shelves in the garage of all the gardening stuff accumulated over the year.  Then the next task is to complete my raised bed, already in place but needs so much soil and compost added. Last but not least will be our barbecue area and so we move onwards to our goal of total completion so we can get more holidays in!

Away with friends

We have just booked a few days away in our motor homes with friends. One of them has never been away in a motor home before so is really looking forward to it. We have chosen a place we know well, where we can get good walking in. Also great for mobility scooters and wheelchairs.  A golf course close by offers really great food at a very reasonable price, all home made on the premises and a deli around the corner bakes delicious cakes (sin free of course - not ).  We are really looking forward to this as it comes right on the back of our holiday in Javea so the blow of returning back to normality will be lessened somewhat.  

Poo day

Not literally of course but you know how it goes. We have had an incredible few days with places to go and people to see.  All enjoyable but Saturday was a bit too much.  We began with a ride over to York to return a suitcase to a store and went straight onwards to Leeds to get a new case for an apple phone. Quickly back into the car and off to Huddersfield to collect a parcel.  Before we had time to catch a breath we went to visit with a friend over with his family from Australia.  We had a lovely time and a quick visit turned out to be a party with rather a lot of guests. This family is well known for their great skills in the kitchen so the food was just so delicious, chicken curry or goulash, all very tasty followed on by home made scone and cream and jam made by a new to me friend.   We had a thoroughly good time and it was so nice to catch up with the family again as their visits to the UK are not as frequent as we would all like.  All the family were over this time though and it was a very special time.  

Sunday turned out to be a day from hell.  My oxygen level was way too low so out came my portable oxygen and very pleased I was to have it too. I never left the bed all day as I knew my body needed to rest, it had just been too busy a time and sadly we just can do so much and we have used up all our spoons as we say with pah. So yes Sunday was my phat day (pulmonary hypertension arterial torment) and was wasted!  How I hate these days. OK maybe not wasted really as I knew my body needed to recover but it so annoys me that after a busy time we know we will hit the lows and need to recover. As it happened Monday was a bad day too but so much rest did me well.  Fortunately Tuesday was ok and I was able to resume my normal working function - as good or bad as it is. 

Izzy

She turns 9 on Saturday and she is very excited indeed.  Colin has asked, though in a tease, if he can join in her party and was given a very disparaging look. I do not do birthdays, gave them up quite a while ago! She is hoping for an LOL house from her parents but she will just have to wait and see.  

We are just in the middle of getting her more piano lessons as her teacher left from school.  This gentleman we are looking at has performed in many televised orchestras and is also often on the Proms so he should know what he is doing.  I have explained she is not one of the pupils who will do too much out of class except with her granddad which is a pity but even so any learning is good. She is a member of Stage Coach so we believe being able to play the piano will come into that quite well too. 

I always smile when I see her pick an apple from the tree in passing.  So my garden has come into its own for sure.  I now want to add a pear tree, again on a pigmy stock and hope it takes well.  

So there you have it,  a catch up on what we have been or going to be up to.  We also bumped into a friend we have not seen in a while and we have been invited to their new house to join in with a t party for cancer charity.  Colin will love this as her husband Martin and he can talk for ever about photos and photoshop or whatever all these things are on the computers these days.  I am really looking forward to this.  

We have friends due to arrive here in the next few weeks from Canada and we always enjoy them staying with us.  They have two grandsons who are just mad about dinosaurs so I have bought them two huge dinosaur eggs which hatch out somehow and also - I know this sounds daft - but some dinosaur plasters.  Clearly they are little boys who will always be getting scrapes etc.  They live in the wilds of Canada so I do not think they will get with ease all the things we can get here.  Anyway it is the thought that counts and if they are anything like Izzy it will not be long before they will be sporting one or two of these!

Whose baby is this

A walk - well a gentle stroll along the canal bank the other day had me wondering when I saw this in the water.  Whose cherished teddy is this. The poor thing came to a watery grave anyway.  I remember us losing a teddy Izzy had and we had to retrace our steps for what seemed like miles, though likely it was not to try to find it as we know how much she treasured it. We were fortunate but sadly the child that owned this will not be so lucky.

Anyway I am rambling as my friend would say so time to go and take my lunchtime meds.  I shall then pop into my local chemist to have my flu jab.  

Take care all and warm love to you all.

Carole xx