Wednesday, 21 November 2018


Andy Sweeney Lyndsey Childs. Love story with ph.

Those of us with ph know of the devastation on hearing the words.  Many of us will have questioned  our partners, husband or wives, can they stay the course?  - cos it sure gets tough.  If we are not in a relationship then will we ever find somebody to take on a partner with a chronic illness, one that is said to be life shortening.  I know there were many times when I told my own husband to cut and run when the going got really bad.  Fortunately for me he chose to stay but I read many posts from others whose partners just could not deal with it - they ran!!!  At the time when we really need a strong partner to be told they are off must be so awful, too much to contemplate.

Two such singleton people diagnosed with ipah were Andy Sweeney and Lynsey Childs.  Both single and both were given the verdict ipah.  Their lives in tatters they both envisaged a lonely road ahead as  they wondered what would be the point in being with somebody when living with the illness they had an uncertain future.  Battling on with the disease alone was the way their life was headed.  However a picture posted on one of the facebook ph sites changed all of that.

It was just an ordinary picture, one many of us post when we change our cars but this picture was about to rock the world of both of them without a doubt.  Andy was the one who posted the pic and Lynsey was one of the many who commented on his new mobility car.  

Before long they began to message each other asking when they were diagnosed, how did they know there was something wrong and the meds they were on etc.  The messages flowed back and forth, Talk continued about their families, friends etc.  As neither of them were in a relationship  the online friendship grew.  After a few weeks of talking and face timing they both began to look forward to their chats.  Lynsey had a bright idea.  She suggested Andy take his beautiful new car on a run, a long run as the distance between them was not inconsiderable, being 150 miles so they could meet up in person.  Andy was up for it so he drove to meet her and straight away Andy said he knew something was there between them and that the same something continued to grow.  They now drive backwards and forwards to each others houses and are planning on more lovely things, like nice weekends away and so forth.  The friendship turned to love and because they both know all the problems of living with ipah they both have an understanding that those not living with it or caring for somebody with it cannot ever really have.

In his own words Andy states that "yes, we both have ph but we also now have a life, a happy life and ph lives with us but it won't stop us being together.  In many ways ph found US"

I was more than thrilled to read this story as being a member of quite a few ph forums I have seen the sadness created when somebody is diagnosed.  Families that split and fall apart under the weight, friends that disappear once they learn the truth of how it changes our lives and families that think the poorly one is not fit to be invited out for meals etc so they stay home alone whilst the rest continue with their happy family life.  Yes  I have seen so much heartache on here so this story with the happy ending has cheered me up no end.  I also hope it serves to say to people that yes, you can find love with ph. Maybe take a look around your clinic at your next ph visit, your future just might be sat right next to you!

Go well Andy and Lynsey, may your life be filled with love and happiness.  I feel sure you will weather the storms thrown up by living with this disease.

Good on you Kevin.

I told you last time of the campaign now going on for making our politicians aware of ph and trying to get a little more help for us out there.  Well the upshot is that with the help of my councillor there are now two people attending on my behalf.  I received an e mail back today from Kevin Hollirake MP telling me he is definitely going to be in attendance at the PH event which will hopefully help to raise awareness of this disease and he sent me his best wishes.

At last we will have our MP's listening and learning of this disease, pushed under carpets for way too many years.  I thank our PH team for setting this up and hope that lots of good cones from it.  Sadly the other four that were invited have not bothered to respond to I must assume they are not going to go.  I pray for a big turnout.  Lots of work must have gone on behind the scenes for this to be put into place.  I thank them all from the bottom of my enlarged heart.


We did it.  We once again looked ahead and decided that we would fight ph and it would no stop us from enjoying holidays.  So we have booked another cruise next year for us and Izzy.  I am praying my ph holds up but we are taking out our insurance NOW because we all know well how it can change in an instant. On my last cruise, though I loved  it very much I was always in bed by 7.00.  I hope to see some of the shows next July and watch Izzy as her face lights up with delight.  I had the denervation since my last one so maybe I will.  

Delightful Liverpool

Izzy came around here last night with her piano bag to ask her granddad to help her with her homework!  Yes she can do this now because on Saturday to get a days respite from all the jobs that still need doing I suggested a day out in Liverpool at the music shop we like to buy him a new Keyboard.  I knew it would be the one thing to get him away from the house and I was right.  So a beautiful new Keyboard now sits in the study.  Izzy was delighted to see it and is looking forward to them both sitting at it playing pieces side by side.

The problem with Liverpool is that it is such an amazing place it appears to ALWAYS be crowded.  No matter what time of the year the shops are bursting at the seams.  Groups of people were gathered around the Cavern, as always.  Some were dressed up to resemble Cilla Black and also a few to look like the Beatles.  The Cavern is such an iconic place and one can always see some dressed as their idols who became famous after playing here. 

I went into Zara and I found a really fabulous dress for myself, really loved the style, colour and  length etc.  I looked at the queues to try on and they were almost out of the door.  Now I am not sure how those of you with pah are but though I can walk, standing still is a no no for me.  My oxygen levels plummet into my boots, my head hurts like crazy and I also get dizzy and feel sick.  I decided against trying it on and just going to pay for it.  We have a Zara in Leeds so I knew it could easily be returned.  Alas the queue even surpassed that of the one to try clothes on so I had to leave it.  I am hopeful, though not in a big way that I will see it on Friday when I am in Leeds and it turns out to be a nice little winter number for me.  

Thought I would finish with this cartoon I saw online today, sorry not sure where it first came from.  Very tongue in cheek, particularly as my hubby took on all the jobs in our home when I first was diagnosed.  Still it made me smile!!

The weather has turned from mild to cold so stay warm and dry.  After saying that I got absolutely wet through yesterday going to my dentist.  I then was diagnosed with thrush in my mouth cos of the inhalers and to cap it all off had to sit in my wet clothes for two hours before I returned home.  Though our house is toasty I took a hot water bottle to bed for a short time to warm my feet which had not recovered from sloshing around in wet shoes and socks.  

Right, headed downstairs now to take my chewable vitamin c.  I also made sure Izzy had her hand cleanser that wards off bugs for two hours.  I always remind her when she has rubbed her hands with some she should rub the bottom of her nostrils in the hope it stops the pesky germs from entering!  Not sure if it works but I try anything to protect myself from them anyway.  

Stay well everyone.  I send you all warm love and the hope that you stay as well as you can.  

Carole xxx

Sunday, 11 November 2018


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