CURED of ph? Sadly I think not

One of my ph friends lives in America and was able to be prescribed the drug selexipag.  We are still not to be allowed it in the UK.  This particular friend has been very poorly with her ph and she was put onto this drug. When she began this treatment her levels were in their eighties and after horrendous side effects which these drugs give is now happy to report has now gone down to 37. She says the doctors are telling her she is cured of ph and she will be written of in a book!  The doctors are calling it a miracle.

Now though I am thrilled for my friend my concern is that here in the UK we were always taught than any pressure in the lung over 25 was considered that we have ph.  I think that this is the standard level for anyone worldwide when being diagnosed with ph.  My friend will continue on selexipag and hopefully her symptoms will remain stable, It really does puzzle me that the doctors in America treating her are telling her she is cured of ph though.  Whilst I am happy for my friend I do not believe this to be so.   Many of us have had pressures way higher than hers and dropped even lower but are still not considered to be cured and certainly are not being written up as a miracle in a book.  Whilst selexipag does appear to help many with ph it has never been spoken of as a cure,  I believe it pushes back the pressures in the lung but if not taken these pressures will continue to rise .

Still although I disagree with the doctors telling her she is cured I just wish our NICE here would approve it for us, When we see how well this drug works in pushing back the pressures WITHOUT needing the Hickman line I am sickened that we cannot be prescribed it here in the UK,  NICE considers that the cost is too expensive for the gains we would have. I wish  they could read how well my friend  is doing on selexipag.  I would love to be given it despite the awful side effects.  We get horrendous side effects with iloprost and I believe the ones with selexipag are considered to be the same.  To get my levels down to one where I had energy again and could do more things would be amazing.  I am counting the days to my next study appointment when Charlie (my ph doctor) said we will talk about the line again.  Only twelve more days to go.  How I wish it was even sooner.

My fear now is that my appointment will be pushed on even further as the doctors strike has an impact on practically everything happening in the hospitals.  As I feel so bad these days after doing very little I will be gutted if I have to wait for my appointment.  As this is the end of my study appointment maybe it will not result in mine being changed.

Ph exercise classes

My class went well, much better than my last one where my heart rate struggled to get back to my considered normal.  Still though it totally wipes  me out and I find even the slightest task to be impossible after doing this class,  I had to smile though at the end of the exercises and we had our weekly talk.  This one was about nutrition.  We talked of lots of things, diet, water intake etc and how important it was to try to keep weight stable,  One rather large lady sitting next to me had taken a cup of tea after her exercise and I noticed she had taken three biscuits, a blue ribbon, a kit Kat and one I didn't see the name of. When we were being told of the need for weight levels to be lowered if we were overweight she spoke to me in a whisper that she didn't eat biscuits and cake and still could not lose weight! I didn't say anything but it made me wonder if she really did not consider kit kats to be biscuits!

Whitby

As Izzy was away with her grandad in the motor home my son very kindly said he would drive me and his girl Anna to the coast.  Tuesday was a beautiful day and off we went.  The big trial was trying to park when we arrived in Whitby.  I had intended to leave them to climb the steps to the abbey and drive off to visit with my godmother.  However due to the parking problems I dare not leave my space as I knew it would be equally as difficult to find another one after my visit with Enid.  I walked very steadily along the back street on the cobbles {very hard with ph} and left them at the bottom of the steps.  I knew they would be teaching for the pokemon creatures that seems to be so popular right now.  I went back to the car, opened both doors wide and with my pillow and my seat pushed far back I spent my time with my feet on the dash board and rested.

My son and Anna just loved the abbey and the history of it and spent a long time inside taking pictures of it.  Anna found a concrete "coffin" in the grounds and just had to lay in it!  She got some strange looks from people but she certainly will not be the first to do this.  They found a "rare" pokemon in the graveyard too were pleased about this.  

Whilst we we later having a meal, a very poor one as it happened} we decided we would take another trip out again before Friday.  So it was that Wednesday was us setting off again, this time to Knowelsey Safari Park, bad idea!!!!

Safari Park

I thought this was would be great as all I had to do was sit and watch, this would have rested my heart and I didn't need to walk far at all.  The journey over was really lovely.  I was getting to know my sons girl more and more and she made me laugh so much.  It was a long time since I had been here.  We had been when my children were small and we have pictures of a monkey on the car.  All of us were looking forward to seeing these cheeky chappies. Oh how wrong I was to be excited about this.

When we were in the enclosure for the monkeys and baboons we smiled as we saw them pluck a green P plastic square {indicating a newly qualified driver} from the car in front.  My smiles were to quickly turn to horror though as one, then another baboon jumped onto the bonnet of my mini.  Both  were trying to get the plastic nozzle out of its place and I was horrified.  I started to shout to my son and Anna to get them off the car!  They were both laughing so loud at the antics of the creatures and at me panicking.  They were both filming all of this whilst I was horrified and they just kept on laughing  I told Haydn to squirt water at them through the said nozzles hoping it would frighten them, not at all, such a bad move as they both put their mouths over them and began drinking the water.  I was horrified as first one and then the other baboons managed to pull out the nozzles and then began to try to destroy the pipes attached. Gosh I was banging on the windows and the kids just laughed louder!  It wasn't until we reached the end of the enclosure that both baboons were knocked off the car by the wardens with their big sticks.  The damage was done though.

Once out of their enclosure we parked to asses the damage.  Two holes where the nozzles should have been were very evident and as we did no know how much damage had been done to the tubes that sent the water to the said nozzles we decided to open the bonnet to take a look.  The bonnet was a filthy mess as one baboon had weed all over it and as they are not clean creatures it looked disgusting was their dirt mingled with the wee.   Though we tried and tried to open the bonnet only one side would open.  When my son googled it only then we discovered it was quite a common fault with the mini, the right side opened whilst the left did not.  This left me in even more despair as my concern was would it be safe to drive home on the motorway with the car like this.  I was worried that the wind would catch under one side of the bonnet and warp the metal. We went for something to eat after washing our hands which had been all over the mini bonnet and so of course they were covered with the baboons wee.

After eating truly terrible food, and I mean really bad we had a short walk to see the giraffes but my mind was on the car all the time.  I was worried about what Colin would say whilst the kids were laughing and saying they were going to put onto u tube the video of the whole experience with the baboons.  We got back to the car as I needed a rest and they decided one more time to try the bonnet, HALLELUJAH it opened.  Haydn assessed the damage to the pipes and concluded that they were fine whilst Anna looked up on ebay where we could buy more nozzles.  This turned out to be so complex I decided I needed to consult with my main dealer.  We set off for home after pushing the bonnet back and on arriving at my house Haydn said he really needed to wash the bonnet of the car as it looked so disgusting.  

The following day I rang BMW and have ordered two more nozzles from the scrap yard belonging to the company  They had got a 2015 mini in for scrap and I could have the nozzles from that one.  At a cost of £17 I did well as through the main dealer the cost was £80.  They should hopefully arrive today.  It will be lovely to then give the car a really good wash.  I dare not do it now though as the holes in the bonnet are rather large and at the car wash place they will not take care to avoid them and so all the felt underneath would be destroyed.  I will be pleased when the new covers arrive and this debacle is all over and done with 

Javea/Xabia

I was gutted to read in the paper that thousands or people have been evacuated from this town in Spain as this is where we had our villa.   Our home was built in the woods and we have many friends and family living here.  The fires were begun deliberately by youths.  At least 20 homes have already been destroyed.  I can see the pictures of the helicopters overhead.  They have huge water bags on the underside of them.  When they need water they drop low and scoop water from the swimming pools.  There are also water dumping aircraft busy trying to get these fires under control.  It sickens me that such a beautiful town is in danger of having such damage by young idiots out to create trouble.  Lives could have been lost were it not for the quick thinking of the authorities who have evacuated thousands of people.  I hope the home we lovingly had built and spent so much time in and created many memories is not touched by this but my heart goes out to each and every person under the threat  of these fires.  The woods would go up like tinder and so sad as the views looking out onto the mountains is so beautiful.  

Life is pretty rubbish right now

My condition seems to deteriorate daily.  My breathing is getting more and more difficult and we have now got a piece of paper  where we write down anything that is not the norm happening to me so we can explain to my specialist.  At my hospital visit on Thursday (my local hospital not my ph one) I felt as if I would faint.  My blood pressure drops down to low eighties so it is no surprise that I feel so light headed and poorly.  This happens even when I am resting in bed so I can't blame it on standing up.  Of course we can bet that on the days I go for my assessment study for the final time it will be amazingly good!  Sods law. 

So another week has gone by in the Ayrton household.  We have Izzy again today as the school she attends has a teacher training day.  Why they can't have one in the 7 week long holiday I will never know.  Colin will take her over to the park to fly the helicopter and  I will rest so that I have some strength to attend my ph exercise class again.  

I can hear Colin and Izzy in the kitchen as Colin is showing Izzy how to make crisps in the microwave, a healthier option.  One very excited little girl is helping her grandad.

So I shall get this posted and wish each and every one of you a good day.

Thank you soon much for reading and clicking the like button when you have done so.  My next blog will be after my visit with my specialist hospital so I hope to have something to tell you as to where I go from here.

Warm love to you all 

Carole xxxx

I salute all my ph brothers and sister worldwide

When I was first diagnosed in Spain with pah over six years ago to be honest I didn't really believe the diagnosis. Yes I I knew I couldn't breathe, couldn't walk, couldn't dress or shower myself and my heart hurt so bad but human nature being what it is I still didn't quite take it in that I was dying, even despite the fact I could not even be promised six weeks to live.  I was sure that once I was admitted to the Royal Hallamshire in Sheffield and they carried out their tests it would prove to be something different, something that could be cured with an operation on my heart.  As this condition is so rare  how could I truly believe that I was one of this breed.

If I am honest it was because of this belief that whilst in my local hospital waiting to be transferred to Sheffield that I could laugh and joke with my family and friends.  I just KNEW that I would surprise them, that my diagnosis wouldn't stand firm, it would be proved to be wrong. Maybe it would be an undiagnosed hole in my heart, or a blocked artery, something that could be rectified.  Alas it wasn't to be as test after test proved the first diagnosis, pulmary arterial hypertension at stage 4, the very worst it could possible be. So it was that I was to face the biggest battle of my life, to live, even whilst this disease continued on its progressive way.

I have always been a fighter, proving this as at the age of 4 being badly burned with third degree burns on a large part of my body.  My parents were told it was unlikely I would survive but 17 skin grafts later and a huge fight to live and I made it,  It was with this same wish to live, this same stubbornness that I faced pah.  I am still facing this fight today.  Despite my levels rising, my breathing becoming harder and harder I will not give in.  Nobody but Colin and my ph brothers and sisters and medical staff know how hard our days can be.  As our condition deteriorates we learn to adjust.  It isn't easy but we fight to survive to live, to trial new drugs, to be around for the one that cures.                                                                        

With all of the above going on in many of our lives and in view of the fact we have just had the Olympics I think that we should all consider ourselves gold medallists.  We certainly know what it is to work our bodies to the very limit under duress.  Without even a day off for us we struggle against such huge odds so to all my ph family yes, you certainly  deserve a medal. I salute each and every one of you fighting this disease. I award you the GOLD.

Denise Reich

Denise is a blogger too and wrote the piece below, I just found it and I love it.   Please open and read it. It is entitled I won't apologise for having fun while chronically ill. 

https://www.facebook.com/l.php?u=https%3A%2F%2Fthemighty.com%2F2016%2F08%2Fwhy-i-wont-apologize-for-having-fun-while-sick%2F&h=-AQFYEy0o&s=1

Den building

 Last week was the time for this event.  I have to say I was amazed at just how good this den was when finished.  Surrounded by small dens being built by other groups the two grown men and their intrepid willing helpers {3} fetched and carried branches, ferns, leaves etc and the den kept on growing and growing until it reached such lofty heights.  Other groups making their own had been and gone yet still the children were sent to gather more material to cover the said den.  I think the result was amazing as can be seen in the picture below.  When the builds were completed they were then taken down by the rangers at Hardcastle Crags, an amazing day out and a useful skill to learn too. 

Italy 291 victims 

How heartbreaking it is to continue to read the news and see more and more of the horror that has fallen on Italy.  With the earthquake taking so many lives and destroying this small village forever we see how fragile life is, how easily taken.  We read of heroic actions of children who died by throwing themselves on top of their younger siblings, saving the lives of the young whist the quake took their own lives. We read of the refugees helping to pull people from the rubble.  There are stories of heroism among all of this but the fact remains, so many deaths.   Nature can be cruel.  We need to live as well as we can whilst we can.  Stories such as this one surely bring this message to the fore. 

My heart goes out to all of Italy as this small village and the horrors will have an impact on the country as a whole.  Such a terribly sad time.

Stacie Pridden

Stacie continues to fight the rejection of her new heart and lungs  The heart is doing well but the lungs sadly are not.  In a quirky twist of fate she received a letter from the donors husband last week .  She rightly does not reveal all that he said but she does say that this woman sounded to be a brilliant lady and her husband was pleased that she helped Stacie to live.  Now Stacie feels she has let down her donor and her donors family as her body is rejecting the donated lungs.  Of course this is madness, but she feels such guilt.  If anyone on here reading this knows Stacie please please can you all try to reassure her not to worry in the least about this, she must not stress over it.  When she gets some new donated lungs she will still retain the heart of THIS donor.  

Sadly rejection of new vital organs is too common which is why there are so many tests to go through before this can happen, so many physiological talks to be done too.  It must be a hard road as indeed even when the transplant is given there are no guarantees how long the donated organs will last.  I look forward to the day when medical science has come so far on that for all diseases stem cells, made in a lab, is the answer and once they are given our bodies regenerate the bad things.  This is already here for some illnesses and moving ever nearer for others.

Do you remember when you were young, well some of you will still be too young to remember but the comics that showed moving stairways etc.  We never believed it would happen but so much of what I read about is now in place.  So yes, this too will come, diseases will be eradicated.  Oh brave new world indeed!

A day in Whitby

On Tuesday my son is driving me to Whitby to visit my godmother.  This will be the first time EVER he has driven me further than to and from the supermarket.  Both he and his girl then intend to climb the steps to the Abbey, of which there are many and I just know whilst they are doing this they will be looking for the pokeman creatures. I wonder if the ones they will find in the graveyard will be Dracula ones!

I love Whitby, a place we have visited many many times over the years.  An unspoilt fishing town with its uneven streets with the original sets of stones and the tiny little shops, many of then selling and making the jewellery from the jet found here.  I look forward to this time spent with my family.  I will not be climbing any steps though!. I shall spend my time of the sofa of my godmother Enid and playing catch up with her news.

The day is dawning, I can see the sun coming up over the hills and the birds are crying out with the early morning chorus.  I think all this is telling me it is time to go.  I shall take my medicines now and  let you all get on with your day.  I hope it is a good one for each and every one of you.

Next week I shall share some exciting news (well for us anyway!) Just waiting for final papers to come through.  I will tell you though that it involves a lot of digging! 

Once again thank you all so much for any comments, shares or for clicking like.  

Warm love to you all.

Carole xxxx

Does anyone know of a good "Hit Man"?

Does anyone know of a really good foolproof way to kill somebody please?  I want to kill a friend of mine.  This friend and I were  in the Thespians together so I thought a good way to kill her may be that I could be in a play with her.  One that has a gun and I could  accidentally use live bullets in the prop.  Messy that though.  Another way would be to make sure we were working together on a play where the trapdoor was being used and she was the one that needed to fall through it and make sure that the mattress isn't  waiting at the bottom of the drop, that may do it.  I would though prefer a way where it isn't seen that I am involved in any way and preferably one that is a slow and painful death. Why do I want  to kill her?  Well it was Polly Bryan  that "got me" with one of those posts where they ask a question, we respond only to find we have been "had" and now need to send out a silly message ourselves. The object is to raise awareness for cancer, always a great cause to raise awareness for but I am rubbish with things such as this.

Now Polly is a good friend of mine from when I was a member of the Thespians with her.  When we left to live in Spain I was gutted to leave this theatre and all of the theatre company behind.  Polly and I became Facebook friends instead. She wrote a post yesterday asking if anyone knew of a good cure for foot fungus. Being a good friend I advised her to go to Boots chemist, they would sort her out and then I got the sting.  Because I had responded to her message I now had to write one of my own, there was a list of 9 I could choose from, post it and then send a message to those that responded to my post. Below is the message I received from Polly, not a message thanking me for my prompt response to her problem, oh no. I received THIS: -

Sorry, You shouldn't have commented/ or liked my last status Hahaha! Now you have to pick from one of the below and post it as your status. This is the 2016 Breast Cancer Awareness game. Don't be a spoil sport. Pick your poison from one of these and post it as your status. 1 Diarrhea again? 2 Just used my boobs to get out of a speeding ticket 3 How do you get rid of foot fungus? 4 No toilet paper, goodbye socks 5 I think I'm in love with someone? 6 I've decided to stop wearing underwear 7 It's confirmed I'm going to be a mommy/daddy 8 Just won £900 on a scratchy 9 I've been accepted on master chef 10 I'm getting married Post with no explanations. Sorry, I fell for it too. Looking forward to your post. Ahhh don't ruin it. (Don't let the secret out). And remember it's all for the 2016 Breast Cancer Awareness....Be a good sport ok?... 😊 🙂

I can't do things like this, I truly can't  so had to engage the services of my long suffering hubby, divorce proceedings will begin shortly!  He was so busy but took time out to help but as the messages came in thick and fast congratulating me and he was getting more  and more  impatient  with me  I thought it was time to draw a halt to the proceedings after mailing around 12 people.  

Now if I had thought more about it I should have done a different one. It seems all of you love Master Chef and are excited for me. My great friend Martin Connelly though saw through this as he asked the question "so why is Colin doing all the cooking then, too clever for his own good this guy.  Anyone that knows me well knows that I wouldn't be able to stand long enough to boil an egg without collapsing let alone cook a meal, and under so much pressure too. So the truth is I am NOT doing Master Chef, it was just a way to raise awareness for cancer.  Now I have done my bit I hope I never get stung  again.  

I still am friends with Polly really so don't send in your ways to kill her!!! 

Ph rehab classes.

 I have done my second class today and it went well.  I did all I had to do and more as I did a six minute walk test at the end instead of three.  When they asked why I did I told them that I just automatically set my timer for six minutes as that is what we always do at the hospital!  It was tough though as I swayed from one obstacle to the other.  I did think I would faint a couple of times.  The oxomiter went a bit wrong though as it registered my heart rate at 41 after all the exercises.  Gosh with a heart rate like this my name should be Mo Farah!  After a couple of false starts it read five beats more than they would have liked but due to the six minute walk test it was understandable that it was raised higher than it should be. I like the class, like the exercises and the physiotherapists that take care of us.  The other patients seem friendly too,though as we are all exercising we don't talk as we just don't have the puff! 

Den building

We are taking Izzy den building.  I certainly will  not have the puff or stamina to help out with this but friends of ours have their grandchildren at home for the summer holidays too so we all decided to meet up and the  grandads take the kids building dens and Moira and I will sit in the tea  room at Gibson’s Mill and enjoy a nice piece of cake! I reckon I got the best out of this deal, though had I not had ph I would have loved to have done this exercise. Loved things like this when mine were  

Juncker 

Loath this man as I believe his attitude towards Great Britain and the EU as a whole will be the reason why the EU (in my opinion) will collapse.  Yes I know I voted Brexit and no I don't wish to change my mind but as he heads the EU his unbending ways and his oh so clever attitude towards my countrymen is the reason many of us fought, and won the vote to leave.  He has faced repeated calls to quit since Brexit but  appears to be doing a " Jeremy Corbyn and is still in place, now saying all borders should be open. This despite all the terrorist attacks,  Oh yeah, it makes sense Juncker, open all borders and allow even more of the murdering swine that are intent to kill as many as they can, whilst sending 12 year old children to do their dirty work for them. Idiot! We still need to monitor people in and out of our country.  Maybe we can allow everyone and anyone over the border and not bother to check luggage etc, makes it easier to get bombs across.  Tell you what, how about the murdering swines ISIS just drive into our country off the ferries in their tanks and carrying all their weapons of war, that would do it. After all lets  make life as easy for them to kill is as we can. Juncker is mad and bad 

MarcMarydyer

This isn't her name of course just her name on my Facebook page.  Mary and I have been Facebook friends for a few years now but never got a chance to meet in person as she has never made it to a conference yet.  Well at last we have made arrangements to meet for a coffee in a few days time, Our ph friends know that this may well not come off as either of us at any time may be having a duvet day or a ph episode, they hit without warning often but we both know this so all we can do is hope that we can manage a sedate coffee in a place central to us both.  It is so lovely when we manage to meet up with another ph friend as it is such a rare disease.  I am so looking forward to this and praying that ph finds something  else to do for the time we are hoping to meet.  

PH news weekly digest.

Link to PH News

http://us5.campaign-archive2.com/?u=52c64784d386bd00ea57ee792&id=43807a1aac&e=0946a865ff

Well so much interesting things this week in the above so I decided that for those that do not receive it I would post it all.  We get so much info in this weekly digest and I look forward to reading it as soon as it comes in.  Always reminds me just how far we have come in the race for the cure or the better meds that help us with ph.  Still looking forward to the day though when ph is eradicated for us all, it's coming, just believe it.  

I think I will bother Colin again one more time to get this blog out today as I also have Izzy's journal to update and e mails to friends and  I just don't seem to get around to doing,  Spent all Saturday having a duvet day and it takes some catching up, not that I do much, Colin takes such care of me but he can't do my journal and he can't do my e mails.  

Take care each and every one of you.  Thanks for liking and or sharing my blog.  Warm love to you all and a huge thank you for taking the time to bother to read.  It does matter so me, truly it does.  Wish I could get as many likes for this as I did for my Master Chef post!!!!!

Carole xxx

Update on the hope of a cure

By the above title I mean the hope of a cure that was on our news channel over a year ago. Doctor  Nick Morrell and his team felt that they had found a cure for pulmonary hypertension but of course further work needed to be done.  I know that on mice and rats AND human tissue their testing showed that the condition was reversed.  We were told that this is a new way to look at ph and so through their searching a different route they strongly believed that we had a very real hope of a cure.

Now I am pretty impatient kind of girl when it comes to my health and as I can feel daily a deterioration in my condition I just knew I needed to follow up on this.  I sent Dr Morrell an e mail and asked how much further on they were with this.  He very kindly came back to me the same day with this.

Dear Carole,

Thanks for the enquiry.  I assume you are talking about the BMP9 potential treatment that was in the news last year? This potential treatment in now being developed by the biotech company (www.morphogen-ix.com} and we hope to be trialling the drug in patients by the end of 2018 if all goes according to plan.  The trial will be conducted in the UK so all PH centres will be kept informed when the time comes.  Please watch this space.

Best wishes
Nick Morrell

So what is my plan now.  Well of course to keep as well as I can so that I can trial the drug.  I am not sure why it is just being trailed in the UK, maybe it will be trialled worldwide too though he just mentions the UK.  I know the trials I have been on have been from Canada and America so I do know they share all their trial results etc.

We now we know where we are up to.  I think we all need a goal, something to work to and one of mine is to still be here when the cure comes.  If you open up the link, well actually you will have to google it then there is some pretty interesting stuff about it. Lets hope we are all here when the breakthrough is made.

Gosh car trouble in spades!

I took my car in as it had a slow puncture, well the computer on board kept saying it did.  After months of it being blown up around every three weeks I finally decided I needed to get it repaired.  My local garage were very efficient and said they had found a piece of metal and so sorted out the problem.  Right, good job done.

Friday I went over to Leeds and received a parking ticket.  Though  was parked correctly in the bay and my badge was clearly on display a jobsworth parking attendant looked a my car around four minutes after I parked up and noticed I had forgotten to set the clock.  Despite being in a disabled bay where I could stay all day he issued a ticket.  I was gutted.

The following day I again went to Leeds and went in the wrong way.  Anyone who knows Leeds knows it is a nightmare to get around with all one way streets and bus lanes.  I followed the loop but eventually turned too soon and found myself in a bus lane!  So I know I will receive a ticket for being in a bus lane next week.

On my way home, and no I made sure I put the time on my clock this time, I saw with horror the light came on that told me to drive carefully as my tyre was under pressure again!  Gutted I decided to drive straight to the garage and ask them to look at it again as I needed the car the following day.  They were perplexed but settled me in a chair with a cup of hot chocolate and went to work on the car.  In minutes a guy returned with the tyre to show me the problem.  There was "bubbling" around the valve and this meant that there was a problem as this is what tells the computer there is low pressure.  Nothing they could do, it had to go back to the BMW dealership.  A call to BMW and I was told that the service department was closed but she did put me onto the recovery team.  The result was that my  car was taken away on a car carrier and I have been loaned a Renault Megane.  When he asked me what would be my preference for a car I said I didn't mind, automatic or stick made no difference but it MUST be clean.  It must not smell!  I know this sounds daft but I have had loan cars that still had dirty tissues in the pockets and had tons of dog hairs that went all over my clothes.  Also I have had loan cars that smelt of cigarette, ugh!

I am told it may take up to four or five days to sort my car out!  What!!!!!!  Well at least I am mobile again.

This turned out better than we could envisage.  Colin's car was due for service on Monday so went over with him as my car was in the same dealership service department  My car was ready at the same time as his so I drove it home.  When I took my loan car back to the company they asked why I bothered with getting the car as I didn't drive it more than the few thousand yards to their office.  My reply was well as I had been told it may take days for my car to be returned I needed a car.  Only afterwards did I think to myself I should have told him to mind his own business, particularly as he tried to get £24 off me for insurance on the loans car.  As I had to give a £50 deposit when I hired it this concerned me but I argued that I did NOT take out this insurance.  Reluctantly he said he would refund the £50 but it would take a few days to reach my account.  I do not understand this as they told me that though they take details of the £50 they don't actually take it.  I shall watch my account with interest.

Roy Taylor

Sadly Roy died yesterday at 1.30 in the morning.  Not sure where he died but I think it was his own home.  Of course the family have chosen not to tell me anything of this so I was not able to say my farewells to him.  unbeknown to them however Roy and I did have a talk as I went up one evening and rang his bell, no response as he is deaf.  I looked through the letter box and he was just coming up his hall to go to the loo.  I shouted and banged the door and he opened it.  He let me in and we had a pleasant time chatting about old times.  He dare not tell his family as they said they would not speak to him again!  So sad but pleased we had this final talk.  Can't  wait for the place to be sold now.  On the plus side though with regard to property we have some exciting news of our own that I will share in due course, just waiting for final  signatures!!!

Andy Murray and Olympics in general

Well I am so pleased that Andy won another gold medal but fed up with all the stations commenting that he was defending his win after his previous win.  I never saw or heard them saying that about any other medallist who had won a gold previously.  They just said they were hoping to win yet another gold medal.  Why the difference for Andy.  Anyway he has won a second gold medal and I was so pleased for him. His opponent played a great game and this is a man to watch , this great tennis player from Argentina showed just what a formidable player he is, Juan Martin Del Pitro, what a guy to follow.  Both men were understandably emotional after the game and very tired.  They both cried and it was said that one news reporter said it wasn't macho!  what the heck,  they had fought a brutal game for over 4 hours, tiredness and elation and disappointment was at the heart of tears.  I have no problem with seeing a man cry, stop being such and old fart whoever said this.

I see that now we have some of the cheating Russians out of the game it leaves it open for other countries to really show off their skills.  Of course as Britain is doing so well there are people wondering if we too have followed the lead of Russia.  I think not, I believe we have just upped our game and shown the mettle Great Britain is famous for, well done you guys. so proud of each and every one of you.

Well enough from me as I had a dream that somebody wrote on the bottom of my blog that they were nice blogs but too long!  I woke up really believing that I had seen it so keeping that in mind I take my leave of you all again but not without once more thanking you all soon much for reading them.  It means a lot as does the clicking the link for like and comments too is always a huge bonus.

All have a great day and Stacie go well with your tests at the hospital today with regard to your lung function tests, I pray they have risen and that you do not need another transplant.

Much love to each and every one of you.

Carole xxx

.

Stop the World I want to get off.

As most of you will know we have been on our holidays to Scotland.  Though we rarely managed to get wifi or indeed even a signal for our telephones we did most of the time get television so it was great to keep up with the news worldwide.  I was shocked and horrified as each day yet another extremist either opened fire, ran lorries into crowds, or even decided to use an axe to kill people.  It was so shocking that I actually dreaded each news item but felt compelled to watch nonetheless.  I am sickened at the world we have become and it has to be said, and  yes I know I have said it before that it can't be denied that most of these atrocities are carried out by Islamic terrorists and they say it is the name of religion.  No religion I have ever known goes about the barbaric acts of killing as they do.  They are just cowards, absolute cowards and I hate each and every one of them.

Also upsetting is the fact that most of them get shot and killed themselves after carrying out such cruel acts and then we are left to pick up the pieces.  The families they leave behind are still allowed to continue living in the countries their sons abused so badly.  Maybe if the people that are leading up to carrying out such terrible things knew that once their deadly deed is over ALL their family left in the country they have so abused would be sent back to where they came from they just may think twice.  It is easy for them to just die knowing that the tab for bringing up their children or taking care of their elderly parents etc would for the most part fall to the government of the country they have so badly abused.  It just may make them think twice. 

I read the headlines after the most horrendous killings in France  by the Islamic terrorist and the headline said A Night Of Terror, well it wasn't just a night of terror.  Anything like this has consequences that travel far and wide.  It is like throwing a pebble into a pool,  The ripples start small but they grow.  So too the effects on all the families, neighbours  and the countries as a whole.  So much pain, so much suffering, so many families destroyed forever.  Time will not dim the pain.  It is so sad.

Whilst reading the Scottish papers I read an article about a family who had been welcomed onto the Isle of Bute.  They sought sanctuary and were greeted with open arms as part of the refugee programme.  They were given a house and promised money for the next five years.  One would have thought they would have been so pleased to be out of their war torn country but no....... Not at all.  The family were saying they were bored.  They said this island was a place people went to to die.  It was full of old people.  They had hoped to have been given sanctuary in London where they would have been able to talk to their own people.  There were four families welcomed onto Bute.  Two were very grateful but two wanted to go back to where they had fled from.  It had cost a lot of money to bring these families over as part of the refugee resettlement.  For me I would spend a little money and send them back.  I found their moans and groans to be so ungrateful it shocked me to the core.  They had not managed to master any English and said if they could only go to London or Manchester where there were others like them they would settle with them and learn English.  Now is it me or does this sound mad.  If they were re settled with a community of their own nationality do not tell me they would then be able to learn to speak English whilst they couldn't learn in Scotland.  Yes send them back, in the long run it will be cheaper and see how they then like going back to the place they fled from, after all it is what they are now asking for, give them their wish. 

Scotland

How could anyone not love the majestic views of the highlands of Scotland, such amazing scenery around every corner.  With our motor home we moved on from day to day mostly and each place we went to we gasped with the splendour of what we were seeing.  We spent days with our van parked beside lochs where Colin fished, no he didn't catch a thing but had fun trying.  He went mountain biking on the most splendid trails and I meanwhile lay on our sofa and just took in the views and read.

On one site Colin went for a walk taking his camera.  He came back to show me some pictures that were rather unexpected.  I have posted them on here.  On the first we see the pure white rabbit popping up out of its burrow, where did this rabbit come  from, an escaped pet I assume or are there pure white rabbits in the wild, would love to know.   

In the second picture we see a Jack Russell with its bum sticking out of the burrow where it was trying unsuccessfully to capture the rabbit.  We know he didn't manage it as he following morning we saw the same rabbit seemingly oblivious to how close he had come to being torn apart chewing the grass.  What did upset me is that the camp site we were on had a very specific sign up saying that dogs MUST be kept on a  lead at all times.  This dog was from the site as we saw it later with its owners who seemed to think that the sign was for everyone else but not their dog.  It pleased me so much that the dog did not get its prey.  

We managed to get to see our friends Mark and Toppy in their beautiful home in Ardfern where we were very warmly welcomed. After almost three weeks of barely not speaking to another soul it was lovely to talk to somebody else.  It was then time to head down towards home.  The scenery changes so dramatically when leaving the Isles and the highlands.  Though the lowlands are fine they cannot compete with the highlands.  It is almost instantaneously  how quickly the change is from one to the other and we both remarked on it.  Roll on next year when we hope to do a similar trip again, this time spending even more time in the highlands before heading home.

Something for the memory box

In one village we went for a short walk and I was wearing the wrong shoes so my feet were getting wet walking through the puddles from a down pour that had occurred just before we arrived.  How fortuitous then to see something for our memory box that will forever remind me to check my footwear before leaving the van.  I know some of you manage to wear footwear similar to this type and I take my hat off to you.  Yes they are beautiful but not for me, I would break a leg in them.  These miniature  ones will remain for me the only form of high heels I shall own!  

Where I  breath a huge sigh of relief.

My daughter and Chris went on holiday with Izzy to Turkey just days after the coup.  I was horrified and begged them to get their money returned but Thomas Cook would not and also would not even move their holiday to another destination.  In fairness they were on the other side of the country but I was still so worried all the time  they were away.  To make matters worse as I had said before we had very little telephone signals we found it difficult to catch up with how they were doing.  I scoured papers daily to see if there were any more problems but to be honest it wasn't until I managed to find out they were home and safe did I breath a huge sigh of relief.  They said the hotel was amazing as was the service received and they all had a fabulous time which of course I was pleased about but I pray they never again go to a country that has so many problems.  That said Belgium, France and America have had so much heartbreak with their terrorists so quite where one is safe nowadays who knows.  Anyway they are home safe and well and we are having Izzy daily from tomorrow for a week so no doubt she will tell me all about it. 

Didn't get to post this yesterday so,we learnt from Izzy all about how,she can now jump into the sea from a very high pier.  So proud of her.  

Stacie Pridden

Most  of you will have heard of Stacie who after waiting years for her transplant was given one just in the nick of time. She became a celebrity of sorts and could be seen on many tv channels initially after her transplant.  The speed of her recovery was huge.  She surprised the doctors taking care of her and all we with ph too, as well as of course her family and friends.  She was invited to Wimbledon  where she enjoyed at first hand all it had to offer, a dream of a lifetime for her.  Stacie then went on holiday for the first time ever abroad with her lovely boyfriend Mark, she was so excited.  Well things are not going so well now unfortunately as she has been told her lung function is seriously low and they are considering another transplant if the medicines they are giving to try to turn this around do not work.  She is a lovely young girl who I know personally and has gone through so much in her short life.  She has done much to bring to people's attention of the need for more organ donation.  I know Stacie is sleeping a lot now as her strength has gone.  One can only hope that the meds do their trick, another transplant would be such a huge blow.  Please keep her in your thoughts and wish her well. 

PLEASE. Don't tell us we all die!!!!!  

Pulmonary hypertension and Serena Lawrence.

http://l.facebook.com/l.php?u=http%3A%2F%2Fpulmonaryhypertensionnews.com%2Fblog%2F2016%2F07%2F12%2Fthe-worst-advice-you-can-give-to-a-pulmonary-hypertension-patient%2F&h=dAQG1Cx4J&s=1

Serena wrote an article a few weeks ago that I saved knowing I would want to repost it for anyone reading my blog to read and digest.  She puts into words much better than I could ever write about things NOT to say to a ph patient.  How many times have we heard these same things said to us, how many times have we wanted to scream in the faces of the people saying these things to us so easily.  Ph is so hard to live with, knowing what we have each day, waking up to another difficult day and hearing such crass remarks sometimes gets just too much.  Thanks Serena for this.  I think I will copy it and hand it out to the next person that says such things to me.  It just may make people think twice before they open their mouths.  Here is what Serena wrote.  

In the papers today

I was saddened to read of the death of a young man in his 20's who was hit by a train when he leaned too far out of the window of the train he was in.  Some who saw the incident said he was beheaded   the police said he wasn't but he was so badly damaged by the incident.  I am so sad that a young life ended so quickly due to a tragic accident.  I pray others take note of this.  I was always terrified of my children when they wished to lean out of the train.  Fortunately on most trains it is now impossible to open the windows far enough but some still have the capacity on the older trains.  My heart goes out to the family of this as yet unnamed young man.  

So touched

On one of the very rare times we managed to receive messages I opened one that pleased me more than any of you could know.  It was from a vey special guy Tony who asked if I was ok as he had not seen my blog for a while and wondered if all was well with me.  Without you needing to know the whys and the wherefores this guy means so very much to me.  Though he is often in my thoughts I could never be sure I was  in his so to see that message meant so much to me.  

I also received a birthday message from my son.  Doesn't sound much I know but believe me my son is rubbish at sending messages such as these which is why I treasure so much a Mother's Day card he gave me around ten years ago, they come so infrequently.  I am one of these moms who saves the cards from my children for years.  I have many of the ones they did for me when they were very young.  My daughter picks the most thoughtful cards ever, I never seem to be able to find these myself so she gets a rather boring card from me though I do personalise them.

My pulmonary rehabilitation exercises begin on the 17th August for eight weeks, twice a week.  It will be interesting t see if they help me with my breathing.  Oh I do hope they do as I know my breathing is getting shallower and shallower.  We shall see.

The injections into my vertebrae seem to have helped a little though not as much as I had hoped.  The spasms appear  to have stopped which is a blessing as they were horrendously painful but I still suffer some pain and I had hoped that would have eased rather more than it has.   Well we cant  have it all can we so I am grateful for the relief I do have. 

Time to see about getting this blog posted.  I have responded to requests to join the pah society and answered facebook messages so this is the last thing I need to do, tomorrow then I will reply to e mails as I have got behind with all my computer things and I need to do this a.s.a.p. Sorry things have taken so long but I should  be back on track now I have a signal.

Oh one message I did receive was from somebody who wished to join our closed,pah group.  He was a member of 667 groups already and admitted he did not have ph but wanted to join as he was "curious". When I said we could not admit him he told me we were foolish he told me we were mad to not have it open so people such as he could talk to people with this disease.  The exchange of messages went on and on whilst I tried to explain why we wanted it closed, in the end I was not getting through to him so told him I was blocking him.  He had told me he liked talking to people who were dying!  How sick is this guy.  Anyway we are all LIVING with this disease, we stay positive. 

One little girl will be arriving around now so I must get organised.  Go well everyone, thanks for reading and if you click like a huge thank you for that, you can have no idea just what a simple act such as that means to me.  

Carole. xxx

Thank goodness for our NHS

I have been waiting months now for my injection into two vertebrae in my neck to help with the pain I am getting.  Making sure an appointment did not arrive in the post whilst we were away  I rang the appointments centre and told them.  All was well I believed so imagine my shock when we arrived home from our cruise to see a letter stating that I could go in on the 22nd July, yikes......... we are away in the motor home touring Scotland, as I clearly told the girl on appointments.  Something went wrong so I was gutted that it may be I go to the back of the queue for refusing a date.  Well somebody was on my side.

I rang the pain management clinic and spoke to a lovely lady and asked if I could be given a cancellation.  Problem was I needed to know five days in advance as I was to come off warfarin and go onto self injections of heparin.  Was the time scale workable.  Yes it was, they had just that morning had a cancellation so today with an INR of the accepted 1 I went down for my injections.

The whole procedure went very smoothly and I had a laugh with the surgeon that carried out the procedure and the staff.  They said I was easy to work with which pleased me.  It wasn't a painful procedure, more uncomfortable as he needed to press down on the very place where my neck hurt to begin with.  Well actually that isn't  quite true.  While I thought he would inject into the side of my neck on the left he explained that no he wouldn't .  Pain is a strange thing, where we perceive the pain is coming from is often not the place so he actually went into my spine on the right.  He was very pleased as he showed me on the x ray where the needle went right into the joints of my spine, a brilliant result.  So after a short, very short in my case rest as I had not had any sedation it was home and here I am.  I have to rest today and not allowed to drive for 24 hours.

It can take up to 4 weeks for the full effects to work and I was also told that it may feel worse before it gets better.  I can go with that, just grateful for our wonderful NHS staff who made it all go swimmingly. So another job done.

Heart monitor results

Well not good but not unexpected either.  I have said I knew I was deteriorating so when the results came back and said there was a deterioration in how my heart was coping, sometimes slowing down, palpitations, speeding up too fast, all of these things made sense to me.  So where do we go from here?   My local doctor was going to talk to Sheffield about the results and also send them on.  The secretary of two of my specialists have told me that they will make sure these results get put in front of the two I have been seeing most of recently, Robin who ordered the tests and Charlie, my doctor who is in charge of the study I am on and who rang my local doctor to try to chase up the results.  I am due in for my last study appointment in the middle of September for two days and I have no doubt something will be decided on and will begin to be put in place then.

Very good U tube explanation of ph for the newbies

Some of the new ones that come onto Facebook have difficulty in showing or telling their friends just what PH means.  Many have family and friends who believe they are "putting it on" so I was pleased to see this on u tube today and would ask them to show it to anyone who has no concept of ph.

Pulmonary Hypertension: A challenging cause of shortness of breathK. Akaya Smith, MD, a pulmonologist at Penn Medicine, discusses dyspnea, shortness of breath, and how it is one of the most common presenting conditions of p...youtube.com

Even for the patient themselves it does give an insight into just how our hearts and lungs work and why we are so compromised when we get this disease.  It is rather a long explanation but it has diagrams and the woman talking about the condition, and indeed other conditions that affect the heart and lungs is very good at explaining it in a clear and concise manner.

Scotland

As we head off to Scotland for around three weeks I have once more got to have my INR done en route.  The first time we went we had to do this and it worked well.  I hope it works as smoothly this time and there are no complications with trying to get my INR up to an acceptable level, there shouldn't be but it is always a worry when we are not in familiar places.

Packing again, and how I hate this but at least once I have decided on the things I need, very little as we do have laundries at most sites I shall leave it up to my better half to load up the motor home and I shall go over to Leeds to meet up with my son and hopefully his delightful girlfriend Anna for a bit of a natter as we won't see one another for almost a month.

America

Once again the pure evil that was carried out in Dallas four days ago is so hard to comprehend.  It appears that this was about race and creed, blacks versus whites.  Yes I  know there is so much more underlying but I am not a journalist just somebody sad to see killings such as these.  Where will all this madness end.  I wish somebody had the answer but I don't  believe there is one.  Every day when I open my paper or read the news I am expecting to see such terrible things, such atrocities carried out in the name of religion or colour, it saddens me.  I fear for our children growing up in a world like this.  My son told me I wanted an ideal of going back to the 1950's, well yes he is right.  There has never been a time in history when killing didn't go on but now it is just so common place we all expect it and just turn the page, or turn over the news.  The world has become a place of corruption and argument in almost every avenue.  That to me is the saddest thing.

Andy Murray

Andy Murray went on the win Wimbledon again for the second time  This Scot, who I make no bones about saying I just love did Great Britain proud.  He has learnt how to accept the publicity, how to talk to the people behind the cameras and now comes across as a nice guy and a great ambassador for tennis.  Well this is how I think but my doctor will say differently, she can't stand him!  Oh well I love him and am pleased he came through.  Since becoming a husband and a father he has grown up more and become more comfortable in his skin, i hope he goes on to win many more grand slams and another Wimbledon winner, we shall see.  I hope so.

Sports Day

How I would have loved to have been able to go to this as it is the first sports day for Izzy but alas I am told no, I need to rest and anyway I struggle to stand for any length of time.  Grandad has gone and her mommy so I look forward to the tales when they return afterwards.  I love my grandaughter very much but would be the first to admit she will never be an athlete, she takes after me in this regard.  My only hope is that she enjoys it and doesn't get upset if she gets beaten and that she always congratulates the winner with good grace.

Archie

This is our baby, born during the horrific floods in Calderdale in the bathroom of his grandparents house.

How time flies.  Now six months and a few days old he has two teeth, loves to pull himself up and stands holding onto furniture, rolls over, but not yet mastered the art of rolling back and has the most beautiful big eyes.  He is a sunny natured baby and I am so very proud of him.  His mommy Jess takes him swimming too so that is a great thing to do at such an early age.  I just love this little man.

Update of sports day

One first, one second and one third.  One very proud grandma here writing this!  So unexpected!

Rory her boyfriend is not in love with her now, he loves Violet and Daisy but Harry still loves Izzy so she is fine about that. Kids, one for the journal.You can see how happy she was at her sports day, she is the one with her mouth open wide with laughter.

Onwards then to swimming and she did so well that we are all soon proud of her and she is taking the intensive swimming lessons over the school holiday for one week.  Well worth the effort to raise her game.  

Ending on a funny, well I think so

When I had finished having the procedure on my neck the nurse pushed me into a side room.  She asked me if I could raise my legs and was shocked as my legs were immediately raised almost to her face.  She obviously didn't expect this but what she said next made me realise why she didn't expect it.  She then said "well you can get dressed now but I make no apologies for saying this to you.  I always stay in the room when really old people like you are getting dressed after having the injections in case they take a turn!"  I always thought I looked ok for my age.  Now old maybe to her, she is around late thirties but REALLY OLD, I ask you.  I bit my lip to stop from laughing.  Wonder what she will think if people consider her really old when she reaches my age.  

Warm love to each and every one of you and thank you for the likes and shares.  All keep well.

Carole xxx