SAD DEATH OF FIRST DENERVATION PATIENT FROM UK

Barbara Cherry R,I.P.

Sadly we recently heard of the death at the hospital of the first patient in the U.K. who had denervation for her pah.  Barbara Cherry just wanted to change the world of PH - wanted to put her body forward to trial this.  She said she wanted to do it for the sake of all the young ones suffering PAH. After the denervation she had a new lease of life for a while. Sadly her PH was advanced and she lost the phight over two years after this procedure. PAH owes her a debt to be the first to agree to this pioneer treatment. Barbara will not be forgotten in our world.

I remember speaking to her a few months after her denervation and she said that at last she could walk up the hill to meet her friends in the coffee bar without feeling her lungs were about to explode. It was after talking to her that I made the decision I wanted to try this procedure and was able to talk to my team that same day and ask to be put forward  for it.  I have never regretted it and my life has been easier because of it.  All of this I of course owe to the team that made it possible but also to Barbara for her words of encouragement.  Had she not been so positive about the whole experience I may well have not asked to move on with it.  My heart goes out to her husband and family now as they will be grieving for their loved one.

PH and MP’s

We have been asked if we can get our MP’s to attend a PH Awareness talk at Porticullis House, London with goals in mind.  These goals are:-

Reduce time to diagnosis

Improve quality of life

Ensure equity of access to treatment

Reduce financial hardship

Raise the profile of PH in Parliament

Get MPs to ask parliamentary questions to ministers about disease management

My MP is on maternity leave so I talked to my local Conservative Councillior Mike Payne.  Boy has he come up trumps.  Though of course as a councillor he cannot speak for me in London he has asked 6 MP’s to see if they can /will attend.  Immediately Andrea Jenkins came back to say the date was entered into her diary with the hope of attending,  The other five acknowledged the e mail and reasons behind it, we are just waiting to see if any of them will be in attendance.  PH needs to have its voice heard and I hope this talk and photocall helps with this, we deserve it.

Focus Group for PH

Colin and I, along with others with ph have been asked if we can attend a focus group session on Thursday 29th November.  We are to be joined with representatives of Hallamshire Hospital asking us questions  designed to gather our thoughts on the concept of a particular model of care, which will be introduced to us at the beginning of the session, so I have no idea yet of what it will be about.  The session will be filmed and recorded to allow then to look back on the discussions the the recordings will not be made public. Should be interesting and we look forward to this.

Threw out our unwelcome visitor

This was one of our first visitors to our new house.  He/she appeared very shortly after our move but when I saw it there was no way to capture the blighter as he was about 14 feet high in the void in our bedroom. This void is over our bed so it was interesting to see him run backwards and forwards across the ceiling he seemed to like it up there as I saw him often,  fortunately I am rather fond of spiders, the bigger the better so I was not unhappy about him but Izzy was. I kept on changing the colour of the lighting in the void hoping it would make him scurry down but no joy with that one, in fact he rather seemed to like the green one as he was more prominent when that one was on! This weekend I saw him for the first time in our hall on the floor. At last I could catch him and place him safely outside - hopefully never to roam our house again. Result one happy Izzy, personally I shall miss seeing our visitor around, he did us no harm but at least we have a happier little girl.  

Eyam. We did it.

Though we did go to Eyam last year we sadly did not manage to get into the museum. I wanted to know more about this village that made the huge sacrifice to keep the Black Death from spreading to the outlying villages. The museum is well set out with an amazing video outlining the way they  managed to do this. Worldwide the Black Death killed one third of the worlds population, yes you saw it right, worldwide one third!!! Eyam kept it contained even though it meant that more could have been saved had they fled. There were many deaths and the museum talks about a few individuals along with dressed up dummies to depict them. Izzy hates dummies so we had to move quite quickly past each and every one of them. This was a pity as I could have spent hours in here. Never mind, it means another return one day which I will look forward to.

Whilst in Castleton, just outside Eyam Izzy climbed to the top of Mam Tor and was elated on her return.  One of the three peaks is next on her list to walk with her granddad ready for Snowdon sometime next year.  She also did both the caves and came back telling me how in one of them, named locally as the Devils Arse the entrance to the cave is so big that rope makers carried out their work here. She watched a demonstration and bought a piece of rope. It sounded fascinating but it was one cave I could not do as there are over one hundred steps to go down into this and that means of course one hundred to climb out.  Certainly not for me.

Not sure of this paragraph because I doubt know if it will work but if it does here goes.  This is a video of Izzy when she was very young.  We had taken her to see her very first pantomime, Dick Whittington.  I remember putting the bows in her hair and her excitement as we set off.  She soon learnt to scream and shout at the villains in the play and had a wonderful time.  Now it is set in stone that yearly she goes to see a different pantomime and really looks forward to them.  I love this video and the way she pronounces grandma and Grandad.  

Modern Technology scared me witless

As with most people nowadays we have lots of gadgets designed to make our life easier, or lazier in fact.  We have Alexa in all the rooms and yes, to a point it has been great to keep in touch with family in different rooms of the house without my using the stairs.  I can ask Izzy to come down from playing in her room with her friends, always easier to use Alexa than my lungs.  I can coax Colin down from the study, { almost finished now} for dinner etc so I was quite happy with her.  However I was scared out of my mind one evening when home alone.  I was in bed and a blast of classical music belted out from the kitchen, loud, I mean REALLY loud.  How had this happened, there was nobody else at home.  I went in to check all was well and to turn her off.  My thoughts were had somebody entered the house, were they playing a sick game with me.  Then I realised our dishwasher, that opens on its own when finished so it can air dry was open.  Had a gust of steam, or the click of the door opening caused Alexa to turn on. Off I went back to bed but had not even stepped foot into the room when off she went again! Back I went and this went on around four times until she went quiet. I must confess to being shaken by this and was very happy when shortly after Colin arrived home. I told him something weird was happening with Alexa and he laughed! It was him setting her off from the home of our friend to ease my mind with classical music.  He is lucky he is still attached to his head!!!

At last we have chosen new furniture for our lounge, really pleased as right now it is not really a cosy place as the furniture we had was not right.  It is not an easy room to furnish because of the slopes and angles of the roof so we needed to live in it and think about where we would go with it. It needs to be cosied up so in around five weeks we will have now sofas.  Then down to us to get side tables and lamps etc to complete the job.  We are almost there with the house, just the finishing touches. 

All for now, so sorry to have to spread the awful news of Barbara, always sad to lose a brother or sister to ph.  

Warm love to you all and as ever, please comment or click like, it means a lot.

Carole xxx