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.

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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