I now know where I am going

My study took place over two days, Tuesday and Wednesday.  These are very tiring days and by the time I reached home I did nothing but crash out.  I was gutted not to have met up with Jacqy Harris but she was on her way out as I was on my way in, so frustrating as this was due to an unavoidable flat tyre!  I did get to meet up with Gem Cousins who had the best results ever for her ph.  Going from a stage 4 to a stage 1, her best walk test ever and to know that now they only want to see her once a year, what a result.  This now means that she can hopefully go back to Australia and continue with her medicine regime over there,  I couldn't  be more pleased for Gem. They have also said that they are not now going ahead with the hope of getting her on the transplant list.  Needless to say Gem was ecstatic and I was too for her, I always love to see people improving so much and this gives hope to so many more of our ph friends. 

 I missed out on seeing Steph Ingram as by the time my testings were done and infusion I just needed to get home, I was, as I said very very tired.  I have been in touch with Steph since who said she had a long afternoon and she has to go back for more tests so I hope that nothing sinister is going on and that something can just be tweaked.  Sending warm love Steph. xx

As far as the study is concerned I got it wrong last time when I was convinced that I saw a pouch that was very very dark, I wrongly assumed it was ferritin and that was what was infused.  Imagine my surprise then when I saw a similar bag being delivered yesterday, same colour etc. very puzzled I was.  The infusion is blind, meaning even my nurse did not know what was infused so she was required  to leave the room whilst another one took over and as I walked out of the door I saw a very dark bag, made out of material that they obviously cover the bags that come up!  Now I do believe I had the ferrinject yesterday as my eyes have more red when I lower the lid and this is a sign of more iron in the body than I had before.  I hope it gives me more energy but we shall see.

Talking to my specialist

I saw Charlie who many of you will know on here.  I love Charlie and he is always a very willing listener.  When he asked how I was feeling and I told him of my decline and that I now wish to have the hickman line he listened with a very patient ear.  Having been told I needed to go back on it over eighteen months by two doctors and being told by two others that it was too early I just coped.  End of coping now as I need to push back my levels.  Though my MRI and ECG showed very little change since three months ago I know full well, as indeed do our doctors that our lungs can still be getting more compromised.  Charlie said that if I wished to have it back then he knew there was something not right as I have been on the line before and to want it back means that I really must feel bad and we need to try to stop worsening.

We agreed that I would finish this study that ends in three months.  I don't wish to stop this as it fits in well with my plans for two holidays coming up.  He has said that when I return in September we shall discuss the line fully and go down that route.  I at least know what to expect and know of the benefits it gives us as it helps our lungs and consequently our hearts to recover somewhat.  I have been looking around the house trying to see where we will fit all this extra medical paraphernalia in.  When I had the line before we didn't have Izzy who seems to have taken over every corner of this place with all her cabinets full of crafts,, toys etc.  We shall sort it.

America/Orlando

Once again a bigoted person decided to take the lives of 49 and maybe rising people and injuring around 50.  The stupid thing is his father said he didn't like gay people yet it appears that he was gay himself!  My heart went out to all the families affected by this horrific crime and to America as a whole.  We shouldn't have to endure things such as these happening in the world.  I have hatred for his wife who knew what he was going to do and didn't ring the police.  For her part in this she should be given a whole of life sentence to my mind.  To see the guns in the house, to even go with him to suss the place out makes her culpable.  He was even planning on gunning people down in one of the Theme Parks.  I know there will be some who don't  agree with me but we need to get tougher.  Yes he lost his life, the ultimate price BUT he didn't suffer as many are doing now.  He should have been severely punished with many sufferings, tough ones first and then maybe show others that WILL come after him that it will not be tolerated.  Maybe tying him to two cars and pulling him apart whilst alive.  Barbaric I know, against human man rights I know but what of the rest left grieving,  others coping with terrible injuries  and America as a whole who feel the pain of what this man did.  Some countries have it right with their barbaric punishing ways of ending lives.  He did not care who he hurt, nor did his wife. He certainly didn't care about all the suffering caused in the aftermath of his deadly deed.  He laughed as he gunned them down.  My heart hurts for America. 

Poor little mite

Again America and in a Theme Park  Lake Buena Vista.  A two year old little boy Lane Graves was playing, enjoying splashing about at the edges of the lake with his four year old sister.  A lovely family day out turned into the worst nightmare for any parent when an alligator  snatched the little boy and pulled him into the water.  Though the boys father battled to pull his son free from the grasp of the alligator his fight was in vain and the boy was pulled further away from any hope of a rescue.  

An intense search for this little mite was made and 16 hours later on Wednesday he was found by divers only 10 to 15 feet away from where he was taken, six feet below the surface.  The story is that his body was completely intact which must be a mixed blessing for his parents.  Not that anything can make them feel better right now but I think in time it will offer a smidgen of comfort.  

There were signs up around the lake that said nobody was permitted to swim in the water.  Who would have guessed that just splashing about right on the edge could have brought such a terrible consequence.  My heart goes out to the family.  He looked such a lovely boy and the life he should have had has gone.  I feel very sad right now,  blessings to his family and every who knew him.

Selexipag

Once again when I asked my specialist about this drug on Wednesday his answer came back very swiftly that no, we were not having this drug.  As I said before NICE has said no but there was to be another meeting in June where our specialists were trying to overthrow this.  Has this meeting gone ahead and  and we are still being told NO.  I do not know but I will endeavour to find out.  This would have been the drug of my choice instead of the line but as there is nowhere else to go I will take the hickman line.

Holidays are ahead

I will be unable to post whist away as on the ship the wifi is very iffy I am told and I refuse to pay 55 dollars for a couple of hours of nothing which is often the case.  I am hoping to get updates when we are off the ship but we shall see. 

Packing is going on in earnest today, I hate this, so very stressful.  On this ship, Celebrity Eclipse there are no laundries as there has always been on other ships.  I love these as we dot need to take many things and a quick wash a few days into the holiday and we are all clean again.  So it will be that we shall have to send all our clothes to the ships own laundrette so I need to make sure I have enough clothes to last for a few more days as they rarely cone back the same day.  Underwear will be washed in the cabin and draped over the shower door, I hate this.  Never mind, such trivial things really.  My most important thing is to make sure I have a plentiful supply of my medicines, these are not the type we can find on board or in any port we enter.  I have checked twice to make sure all mine are correct and that my extra supply is all good to go.  I bet I check again later, quite paranoid about medicines but at the end of the day they are our life savers so we need to be. 

Decorated sick bowls

I often take a sick bowl with me when I leave the hospital as I have been known to not tolerate the drive home too well.  Sometimes these bowls are not used but sit in my medicine cabinet in case they are needed.  One was well used the other day when we had Izzy here from school.  I made her a lovely tea but she said she real didn't want any.   She said she had a tummy ache.  After cuddles which she couldn't find a comfortable place and sitting and standing all over the lounge trying to stop her tummy hurting I sat with her on the sofa.  She said she felt sick so grandad leapt to the rescue and handed her one of our sick bowls.  Oh yes it definitely came in handy.  We have a couple more so next time she is here I shall get her to colour them nicely ready for if she needs one again.  Very handy they were!   

Sir Cliff Richard

I read in the news that at last  Sir Cliff Richard has been told there will be no prosecution taking place over the abuse allegations and he rightly slams police who named him a suspect before he had even been interviewed.  One of the young boys who made an allegation could not even describe where the offence took place.  I like Cliff  Richard and feel sad that he will no longer live in his home in the UK.  I feel that many people, on seeing all the furore caused by Jimmy Savile jumped on the band waggon.  Though it is true it has also brought to light many more creeps, Ralph Harris being one there are many more that have been proved to be innocent.  Cliff looks gaunt, who wouldn't be having this hung over his head for the last TWO YEARS,  I wish him peace now and a return to the life he had before all this reared its ugly head.  

Scotland

When this cruise is over we are going to Scotland so we have lots of things to sort out for that trip as we are going in our motorhome.  Sadly our friend who was to travel with us, though in his own motorhome will not now be coming due to having the need for a few tests.  Health is more important but I shall miss him.  All our plans for the holiday were for the three of us and now we are down to two.  Colin and I were talking barbecues etc and planning on what we would cook.  I also know how much he loves potatoes so I was planning some of the meals around him.   In the main though we will eat out but three and a half weeks is a long time to just eat out when it is such fun to cook in the motorhome or outside under the canopy.  Though our friend would have cooked some meals for himself I was having nice thoughts of the three of us cooking outside, well Colin cooking whist they had a glass in their hands and were talking about what the day had brought and what to expect tomorrow.  I am so sorry that he can not be with us on this trip but hope that health for all of us means that we shall do the trip again.  

House hunting

This is sill going on.  We did see an amazing one but all that needed doing inside was just more than we wished to tackle and in truth we would have been mad to take on a garden as large as this one.  My daughter wants to move too so we are looking for two houses, never easy pleasing  everyone.  We are all meeting tonight to look at a house both her and her guy likes so this should be very interesting.  The one we saw last Sunday Izzy was desperate for her mommy to buy it as in one of the bedrooms it had a model mini cooper remote control car.  She thought everything in the show house remained so claimed her bedroom with the toys in.

I shall be thinking of you all whilst I am away, you are all so much a part of my life now.  Generally when I have gone away something happens.  Kath Graham got her transplant, Stacie Pridden got hers.  We sadly lost Hazel Roberts who received her transplant but lost her battle due to uncontrollable bleeding, as a personal friend this was so hard to take.  Please let us hope when I return all is as it should be and nothing bad happening to anyone.

Once again my friends thank you for clicking like on this blog, for the shares if you so wish to do so and above all thanks for bothering to read my ramblings 

Warm love to you all

Carole xxx

 

Constant research.

Royal Hallamshire hospital at Sheffield has its own research laboratories and I was pleased then to see in the news this most resent update from them in their bid to find a cure for pulmonary hypertension.  It isn't that long ago that when speaking to a member of my team I was told that there have been some amazing breakthroughs in the search for a cure and/or medicines to hold it back in their own research facility, here is one of them.

Please see the link below about this research opening up a new insight into regulation of gene signalling and PAH. Follow Link below: -

Breakthrough could help sufferers of fatal lung diseasePioneering research conducted by the University of Sheffield is paving the way for new treatments which could benefit patients suffering from the fatal lung disease pulmonary arterial hypertension (PAH).medicalxpress.com

At last the dates for my study appointment

June 14th and 15th are now set in stone for my hospital appointment.  I had better get my trainers on as this is one where part of the study has me riding a stationary bike whilst attached to all the machines.  I feel they will see a decline in my condition since I was last there three months ago.  I know my breathing is worse, and my chest feels tight.  This is one appointment I am so looking forward to.  The MRI may show a change, we shall see as I am to have this on the 15th.  If anyone is around at this hospital on these dates on M2 please let me know and I shall get down from O ward, where I will be to meet up with you.  I have been booked into the same hotel as last time, one just around the corner and as I know it to be comfortable and the food good I am happy.

Will we won't we?

I stayed up until after 3 o clock, well I watched the tv, I was in bed listening to the arguments going too and fro in the Brexit campaign.  I have to say that nobody on the panel gave any clear or concise answers as I believe it is true there ARE no clear and concise answers.  The in campaign admitted that in truth they did not know quite what would happen if we went out.  Some even admitted that even though they wanted us to stay in they do believe we will do well even if we come out.

Food for Thought:-

If you don’t understand what all the fuss is about. Here is the EU put simply.

A son goes to his Dad having saved up some money from his weekend job.
Son “ Dad I’ve saved up £350 pounds to buy the new laptop I need for my college course”
Dad “Well done son, give the money to me and I’ll help you”
Son “Ok now what?”
Dad “I will allow you £185 pounds back less my handling fee of £5 so £180 which you may only spend on a new phone”
Son “But I need a laptop!”
Dad “No, we’ve decided you can only buy a phone and you may only buy a phone from Germany and it must be pink. You must also source the phone within 2 days otherwise I will not release the money”
Son “But it’s my money!”
Dad “I’m afraid you are a member of this family and you must contribute to everyone else’s needs. I will decide how the money is spent”
Son “So what happens to the £165?”
Dad “Well your sister needs a new dress”
Son “She has already had many new dresses”
Dad “We’ve put it to the vote and I’m afraid you’re outvoted”
Son “But I need a laptop to continue my course!”
Dad “My decision is final”
Son “But that’s not fair, will I ever have a say in how my money is spent”
Dad “No, and by the way we’ve got a couple more people moving into your room and you’ll have to pay for their keep”
Son “Well I’m leaving then”
Dad “Don’t be like that lad, we need your money. And if you leave you won’t be able to buy a pink phone from Germany you’ll have to buy one here instead”
Son “I NEED A LAPTOP!”

I do like that we have different cultures here in the UK.  I like that we have different colours too BUT we are in grave danger of losing our own identity in our own country.  This is my thoughts on it and it may well not be yours, indeed I know a few of my friends disagree with me but we all will be able to get our say shortly.

For myself I think Australia has it right the way they control their own borders and the points system for allowing people to live there.  If we left the EU we would be allowed to trade as and where we choose outside the EU, not allowed now.  We would I believe have two or three tough years, but we have weathered years like this before and come through it.  We are the fifth largest economy in the world here in the UK.  We receive back only half of what we send abroad.  I think we can make Britain GREAT again when we can rule this country again.  Sadly I don't believe we will win the vote.  I hope I am wrong.  The problems here will get even greater when you see the countries that are to be allowed in next.  None of these countries have much to offer to the EU so why on earth would we allow them to enter.  Again a huge cost to our purses coming up here I think.  Anyway we all have our own agendas regarding our wish to stay in or come out, my own family is divided so such is life, very interesting though.

More Food for Thought: -

https://www.facebook.com/136101146405483/photos/a.170859326262998.47609.136101146405483/1350021565013429/?type=3

This post made me smule, well an ironic smile regarding the Brexit campaign.  I would love to post something on a similar nature for the STAY campaign but nobody has posted one on Facebook that I can see.  If anyone in the other camp has something please share and I shall post next blog.

Izzy is on her way home!

The short break for her is over and as I write this the motor home will be travelling homeward bound. I was told yesterday that she had made friends with a little girl in the motorhome next to ours.  This little girl is called Lilly and they got on so well that they were even planning to see how they could have a sleepover in one or the others vans!  Of course it didn't come off so there would have been one  unhappy little girl last night I reckon, we shall see.  Once she arrives here Chris, my daughters boyfriend is to come and collect her as mommy is working  Fortunately for me he understands Facebook accounts and will sort out why I have once again got two accounts!  It drives me mad.  So looking forward to getting it straight again.

Update........  she is back, our house looks like a bomb has dropped as clothes all over from the short break away, waiting to be washed or put away.  Her lego has been all split up now so table strewn with it and once again the fishy smell assails my nostrils as I go into the kitchen as yet ANOTHER tuna sandwich has been made, she eats so much of this stuff.  Sticks are in the hallway, she collects so many sticks, in fact her pockets of jackets could belong to any boy too, any young lad would be proud to have such collections as she has in her pockets.

Mohammad Ali

Sadly we have to say goodbye to this amazing boxer who lost his fight to life recently.  He himself lived with a terrible illness Parkinsons disease for over 30 years.  Do any of you remember him going into the ring and saying "fight like a butterfly sting like a bee" ?  The greatest boxer of all time he was actually a gentle giant they say.  I do not  know as I was never into boxing but I am sad to see yet another famous name leave us.  What a year we have had up to press with the deaths of so many.

What were this couple thinking of

In the news these last few days has been the story of the boy left DELIBERATELY in the forest in Japan by his parents.  This forest has bears in it.  The parents were punishing the boy for throwing stones and so they left him for a few minutes.  On their return they couldn't find him.   After searching for a while they had no option but to call the search and rescue.  It took 6 days for this 7 year old boy to be found.  What went on in his head I would not want to know, the terror of being alone in this situation.  He found an old military hut and went in where he managed to keep safe and he had a supply of water but no food.   Each of the days he was lost I opened my paper  to see if he had been found  but as time passed I began to be sure the outcome would be a bad one.  I am so pleased that he is now safe and well.  

Tess Dunn

She did it!  Lots of you reading this blog know of our delightful and beautiful Tess Dunn.  A young girl stricken with ph has had a tough journey.  She didn't however let this deter her and has gone on to get her Masters Degree in music therapy.  A very accomplished musician she so deserves this.  Tess has a great deal of people behind her, not least her mom who always said she knew she could do it and her dad did too, he has sadly passed away but he would have been so proud of his girl.  We in the ph world are so proud of our gorgeous ph sister.   I have posted a picture of Tess and her gorgeous fiancee Terry who encouraged her all the way.  

The day here is beautiful, definitely summer weather so time to all get out your sunhat, sunscreen and go and enjoy it.

Wam love to you all and thank you in advance for clicking LIKE!

One important note to a special guy, Many Happy Returns of the Day 

Carole xxx

i

Will she won't she?

Wainhouse Tower

This tower is the tallest folly in the WORLD standing proud and having 403 steps inside to climb before the viewing platforms can be accessed.  Costing £15.000 in 1870 there are a few debates that have gone on over the years about this tower.  We are so proud to have it right on our doorstep.

Izzy has always been fascinated by this, living just a few hundred metres away from it and has asked time and time again to be taken up it.  Of course the answer has always been that she should wait until she is older.  Well now she has decided the time is now here and she must go up it.  This folly is open every Bank holiday and as Chris is taking care of her today as her mommy is working they have decided now is the time!  Grandad has said if he is available to help at the time they try to ascend it he will happily join them,   I wish we could take bets on just how many steps Izzy manages to climb.  I know my granddaughter well and I do not believe it will be many.  I shall add on an update at the end of this blog today and we shall see. 

Searching and searching

For a good while now we have been house hunting but not really in earnest as I was always too concerned about the welfare of a good friend that I saw and helped to take care of daily.   Even when he was in hospital I told him we were looking and that we would ensure that it would have a bedroom on the downstairs and that he could come and spend weeks with us and sit in the garden.  (sort of like a holiday for him away from his own 4 walls)  Anyway through circumstances that you will have read about this is no longer my concern and now it is has changed  our search as the needs of this gentleman are no longer a part of our criteria.    So it is that we are now looking with new vigour and can now eliminate some of the things we need in a house.   (I must add here that he is not gone from my mind, oh no of course not.  When given gooseberries by a neighbour the other day I added an apple and sugar and stewed them for him. I was halfway through the process when I remembered that of course I could not give them ) and so we began to look again for suitable properties.    

Yesterday we ringed around five houses and bungalows that were of interest to us.  Our search is a difficult one as we do not want to move very far from my daughter and grandaughter and also we love the area we live in.  Overlooking moors and parks and five minutes away from lovely walks along our oh so flat canal paths yet just a 20 minute walk into town we want to remain close to where we are now.  As we were driving to just take a look at the outside of two of these properties we were seen by the sellers.  We were invited in and immediately shown around them  No appointments had to be made and this made our search so much easier as we hit two nails on the head in a few minutes.  Property number one was in an ideal spot, having only four houses in its avenue and we were excited to see that the garden was private and not overlooked.  Alas it was not to be the house for us.  It needed much work once we looked behind the lovely neat and tidy top show.  Were we younger and I was not so poorly it would have been a great project but the thought of all that entailed ruled this one out.

Property number two.  Oh what a choice spot and once again as we were driving slowly and looking at the exterior the lady of the house came over and asked us if we were looking at her house.  When  I said yes we were and that we always wished to see the exterior of properties we were interested in before we made appointments to view the insides she was happy to allow us to go in and see the rest.  Oh the garden was so lovely.  I could see myself sitting here with a glass of water resting on the table beside me and enjoying all the flora.  The house itself was ok but again though she didn't seem able to see it there was quite a lot of work needed to be done to it.  Kept in the 1920's style when it was first built  for a very prominent person Wilfred Pickles there were many interesting features .  Wilfred rarely used this house spending most of his time in London.  On looking around  I liked a lot of  it, though not all.    However my partner sees things I don't,  looking at it with a more professional eye and so we have (maybe) discounted this one.  I truly don't  even think she saw that the front door had around half an inch of light shining through it.  

Two others we drove past and decided they were not for us and so on we went to one we kept looking at online but somehow never getting around to view.  On driving by this one however and discounting it immediately we saw a board just erected outside a bungalow.  Magnificent gardens to this one and the most amazing grounds at the back taken over to veg and fruit patches.  It just went on and on!  We both immediately decided we must make a viewing for this bungalow  so I shall try for one as soon as possible.  As it will be down to me to make the first viewing cos I will be on my own for a few days Wednesday onwards I shall see if I can make the appointment for when my daughter can join me, two sets of eyes are better than one .

Of course gardens alone would never sway us to buy a bungalow.  However I was so excited about this property that I googled to see if there was any possibility that we could get somebody to continue with the allotment type area at the back of the house.  I was pleased to see that due to a shortage of allotments in the UK we could actually let somebody use and tend our back plot and we could take a share of the produce they grow!  We would not pay any money out and nor would they pay any rent, just a mutual agreement.  This would so work as there is way too much land for us.  More than likely though the bungalow, looking picture perfect from the outside,  will be hideous inside.  Interesting viewing coming up.

Who could resist this

I just loved this picture sent in by a ph patient Being a grandma myself to our adorable Izzy this is so true. When Izzy and I were looking through her memory boxes she took out a pad and pen and began to write.  I had no idea of what she was writing and she asked me how to spell grandma.  I told her and carried on with what I was doing and after a short while she asked me how to spell grandad.  Once again I told her and she completed her task and then showed it to me.  It read  Grandma I will never forget you or grandad.  Wow, my heart swelled as it is for this very reason I write her journals, so she is always aware of my love for her.  Believe me this piece of paper is now in with her box of memories for the two of us to take out and read whenever we like.  Such special memories, though small mean everything to me.  

PH world

I try to always include something of the ph world, new therapies, new breathing techniques etc but this week I have not seen anything to post that hasn't already been posted.  However as I am over at Sheffield next week for my study review and infusion I shall ask about the new therapy they believe they have found in their research side of the hospital.  If I get a glimmer of anything new coming up I shall give you all the heads up on this.

Steven Baker - hickman line 

Steven has had his hickman line fitted for a few weeks now.  Initially he was not too pleased to be told he needed this line but knew he had to go for it.  We talked at length about the line and the benefits of it, plus the adverse reactions.  Just a few weeks on from him having his life fitted I was talking to him about insurance for our holidays.  He CASUALLY mentioned that he walks 11 MILES daily since he got to grips with the line!!!!!!  His one gripe, and it isn't really a gripe is that he gets the purple ph face when he ups the dose and people come up to him and asks if he needs help.  He is so thrilled at the difference the line has made to his life.  Take heart anyone heading down this road.  This was a guy who couldn't walk hardly at all before he go his line fitted.  11 miles daily is an amazing result.  

Must go, new dryer is coming today and once in situ I need to go over to Leeds to a shop to get my watch fitted with a new battery and a new strap.  I  tried my local jeweller who said he could not do it, it needs to go to the specific dealer so hope to get it sorted today.  I bought it on one of our cruises and it was lovely, a really slim watch but when the battery went it was put back in its original packaging  and sat for two years doing nothing in my  jewellery box.  I found it again when looking through this box with Izzy and decided to resurrect it. I hope they can do it in a day, otherwise I shall entrust the collection of it to my son who lives in Leeds city centre so not far for him to walk at all. 

Enjoy your bank holiday, Stacie Pridden enjoy your holiday coming up and your one year post transplant, what a great anniversary that one is!   

Kath Graham, good for you getting your book on sale in the very hospital that you had the transplant. Always a good read even if you are not a recipient or hoping  to be the recipient of an organ.  Life Is For The Living can also be found on Amazon.  Kath has already raised so much awareness about organ donation and through the sales of her book has made lots of money for the ph world.  Well done. 

Thank you for the likes and the shares, where would I be without you all.

Warm love teach and every one of you.  

Carole xx

Selexipag for UK?

USA has decided to allow Selexipag to be used in the fight for better outcomes for patients with pulmonary hypertension.  Now don't quote me on this as I cannot remember where this following info came from but I feel confident that I read that there was a 37 percent better outcome for patients being given this drug whilst at the trialling stage.  We however in the UK have, up to press, been denied this drug as NICE which is the controlling body with regard to such new medicines have decided that there is not sufficient evidence to support us taking this drug.  Of course money does come into play here and I wonder if they realise quite how expensive Iloprost is when the facts are taken into consideration ALL ROUND.  Many of us with ph are on this infused drug that could be easily switched over to this oral drug.  

See the link attached.  Very good read and raises points for and against this drug.

https://www.engage.england.nhs.uk/consultation/clinical-commissioning-wave6/user_uploads/a11-x04-selexipag-policy-prop.pdf

I remember well being on the hickman line and being given iloprost.  My hospital stay to get me to the stage where I could leave was almost five weeks in total.  Five weeks at the cost of (on that particular ward £500 per day), expensive to say the least.  The drug itself was still within the five year boundary so it cost £168.000 per year.  In itself incredibly expensive, {I always suspect that I was allowed it cos they didn't think I would need it for too long as I was so near to death !!!!}   In any case  I was to be on this drug for a total of 12 months.  It worked incredibly well for me as many of you know and allowed me to come off this drug as my levels dropped dramatically.  I must stress though that on top of this initial set up there were all the hospital stays in between.

 When we have the line in we are very susceptible to bugs, infections etc.  Our bodies see the line as a foreign body and whenever we get any kind of illness it requires swift action by our ph team to protect our heart.  As our natural defences take over to kill anything seen as foreign in our bodies it would also see the line as a problem.  The end result could well mean it attacks our heart as that is so close to where the end of the hickman line lays.    As our bodies fight the illness, be it a common cold or a high temperature I would be admitted to my lovely M2 ward and be administered huge doses of infused antibiotics.  My stay would never be short of one week.  Take into account the cost of my bed for these seven days and the price keeps rising.  

Iloprost is well past the five year marker where the cost is so incredible high due to the pharmaceutical companies needing to get back some of the costs of the research needed to get this drug out to us.  Cheaper versions, and indeed the original version is now much less expensive. however for me right now it is where I want to be headed.

Selexipag is taken in a tablet form, how easy as there will be no problem with an infection travelling down the line, how simple.  There would be no more taking a pump attached to our bodies everywhere we go.  All the gloves, sterile equipment, lines etc would be gone, going out would be a much easier  process.  Sleeping with the line would be eliminated and bathing would once more be allowed!  Swimming too would be back in the game  Once we are on the line for most of us there is no chance to go in a swimming pool as without speciality wet suits it is a definite no go area.   So many problems associated with the line.

After saying all of the above the line is so good for our hearts in every other respect.  It works so much better for some of us than any form of tablet, getting straight to the heart and making every two minute infusion count.

There is much to consider by everyone due to have a say in making this final decision.  We in the UK await the result (in June) with bated breath.  It will be so interesting to see the end result.  I for one hope that despite the cost we are to be allowed to have it.  We are an orphan group, there are not very many of us here in the UK with ph and for so long we were way behind in the fight to get us a cure or even more medicines  We are well up there now though and so I hope that a good and right decision is made when all these knowledgable folk get together.  I feel sure that there will be specialists fighting strongly for us to have this drug in the UK as it is allowed now in the USA and other countries.  See link below

http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.nursingtimes.net%2Fnews%2Fprimary-care%2Fnew-drug-on-horizon-for-pulmonary-hypertension%2F7005019.fullarticle%23.V0MJ9F2oNXk.facebook&h=WAQE-4kOt&s=1

Ceramics

Back with a vengeance to my class to be told I was to make a BOAT.  This means design too so we were all put to the task of deciding which type of boat and what was needed to be added to mark it out as so personal to each and every one of us.  I have decided on a fishing boat so part of yesterday was spent going around the Range to see what I could find that could be added after the glazing and firing had been done.  I have come up with a few ideas.  My hulls finished and I now need to make my cabin compete with widows and I shall make that this afternoon.  As my ceramic head went down well I am hoping this does too and I learned such a lot when doing my lady so I hope to improve on this greatly.   { gosh just had one of those moments when you think you have deleted all the post} pleased I hadn't.

Shoes

Like most women I believed I had too many shoes so I resolved to set about sending some to the charity shops.  My shoe rack in our storage room was full as was the one in our wardrobe and so too was under the storage box under our bed.  I piled them all on the floor and set too, I was determined to be ruthless.  However as soon as I saw just what had been lurking under the bed I decided on a different strategy.  Yes the shoes that had been easily accessible over time I did look at with a new eye, I have indeed taken many to the charity shop but the ones lurking under the bed have been given a new lease of life.  Most of them had only be worn once, twice at the most because they were inaccessible to me with ease as even though the bed has a gas cylinder to help lift the bed and the mattress  it is still too heavy for me so there the shoes stayed, untouched and unloved  - but no more.  I now have shoe racks filled with shoes that are "new" to me so I look forward to wearing them at last.  Result.  

Izzy

Izzy has begun swimming lessons at a new class this week and I am told that it is much better.  The teacher is stricter, this is so needed with Izzy who doesn't listen to what she is to do.  When she so clearly was too busy looking around her this week when given instructions the teacher was so swift to tell her to LISTEN.  Hopefully she will come on even better now that this is the case.  After the lesson she stayed in the pool in the other side and had playtime. She enjoyed this very much and had chance to practice what she had just been taught.

Holidays are upon us again, school is set to close for over a week.  Izzy will be going away in the motor home for three nights so she is excited about this.  I will be home alone!  I don't mind this at all and it gives me a chance to catch my breath, or not in the case of ph patients.  I shall take time out to look through my wardrobe and get rid of any clothes not been worn over the last two years.  I know they say a year but no, not for me as I know that as soon as  I get rid of the article I decide I need it.  I am sure most women know this feeling well.  Izzy will come back happy and refreshed after a few days away and I shall have a much needed updated wardrobe as it maybe necessary to buy some new ones if I get rid of enough old ones!!!!! well I do have holidays coming up!

Old friends

We were able to catch up with some friends of ours not seen for years.  Well technically they are my daughters friends and have been for many a year, they all worked together.  Now one of the couples live in Glasgow and so none of them catch up much any more.  This couple have just had a new baby, Daniel, adorable he is too and so they came to visit my daughter and to show her the new addition to the family.  Izzy was so excited to see Brooke, her friend since birth and to also see Daniel.  I was invited down to my daughters to meet up with them as the last time I saw them was at their wedding when my daughter and my grandaughter were bridesmaids for Lisa.   It was lovely as a third friend of the group went also and Chris was there with Harrison so all in all it made for a large very merry group.  Such a lovely end to the weekend.

How profound

I was watching a programme last night and in it one of the characters said to another something like this.......  there are not enough good days in front of us to make up for all the bad days so we must make the most of each and every day.   It made a lot of sense to me so we really should cut our the rubbish in our lives and make every day count.  It works for me.  

Enough now, I have to get to the hairdressers to get my fringe cut ready for the holidays.  I hate the new cut feel of my hair before I go on holiday, I can never manage to get it how I like it so a fringe lopping will do. 

Have a good day everyone and once again thank you so much for liking this blog, clicking the like button and for those that share,  again thank you so much.

Warm love to each and every one of you. 

Carole xxx 

You just have to smile.

We are busy here trying to get all jobs and things out of the way ready for our holidays.  Five weeks holiday with just one week in the middle after the first two weeks seems such a lot to get my head around but I am doing it.  I think all is under control.  I did remember to tell my lovely cleaner Anna that we would be away but that of course we wouldn't dream of stopping her from coming and would find jobs for her to do.  However this actually worked well for Anna who said she could do with a few weeks herself to help her hubby move forward in his business so we were all delighted at the outcome.  Now all I need is a pair of shoes that will go with lots of different outfits, trousers and dresses etc.  Not as easy as it sounds as my feet always slip  out of shoes so it needs careful consideration.

The funeral of my cousin Chrissie was really lovely if you can say a funeral was lovely. She requested that people did not wear black so I went for a striking orange jacket and I feel she would have approved my choice,  it was lovely to catch up with family old and new.

  I even met up with a cousin I had not seen since schooldays so we had a bit of a natter about some of our old teachers, some good and some very bad.  One so bad that were he here today he would have certainly been on the pheadaphile register.  He is the reason why even today geography is a no no subject for me. I was terrified in his class as indeed were many of us girls.  History on the other hand has many pleasant memories for me as too does english  as my teachers were so lovely and kind and informative,  We talked about our enjoyment of learning shorthand and typing and how we put those skills to the test in later years.  Another cousin and his wife and daughter were there too and it was lovely to meet up again. This particular cousin Barry took me on his motor bike when I was around 16  whilst our families were on holiday together and the thrill of the ride was so good that  I was  happy to buy the leathers and helmet etc when I began to date Colin as he too had a motor bike for pleasure.

Went to the meeting to talk about my pulmonary exercise class and I am to begin these classes in three months,  Sadly it means I cannot do ceramics whilst these classes are on as for the eight week course I need to be at them Monday's and Wednesday's, Monday being my ceramic class.  However needs must and my health does come first, particularly as I have been so stressed recently with all going on with my neighbour so roll on August and I hope I get a lot out of them.

It has been a bit weird here these last few days as for no reason whatsoever my granddaughters dolls have begun to cry.  Not together, not at all, and sometimes one cries even whist her dummy is in her mouth.  They are on a shelf and away from anything touching them so this was a bit disconcerting.  If this keeps up they will find themselves being banished to another room, real babies crying is one thing but dolls, oh no.  

I had rather an unpleasant encounter with the son in law of my neighbour at lunch time.  He had not been welcomed in the family, neither by my neighbour nor by his own daughter due to his conduct over the years.  They are  however closing ranks so something good has come out of this scenario as now daughter and father are friends and I hope it is to the benefit of my friend, who at one time changed his locks so scared was he of this man entering the house.  Anyway the encounter went something like this........ Carole can we draw a line under all this now and we are all never to speak to one another again.  (I had already decided this so had blocked them so no problem there and I told him he had no worries as I never wanted to see any of them again,)  I did however ask just what had I done wrong, his reply was that everything I did for Roy was to the benefit of me!!!!!!  Now quite how that works I will never know as I never took or wanted to take  a penny from him, something my friend  remarked a few times was a refreshing change.  Everything I did was out of love.  Anyway I managed not to laugh as I walked to my car and then he told me my last blog was at the solicitors!  Well suits me, nothing in it  that can't be proved with a good solicitor on my side so bring it on,  I do not appreciate however being accosted in my own car park whilst the neighbours are looking down but at least I do have witnesses as to the accusation, is it called slander the spoken word, I believe so.   

Now this family has judged me by their own standards,  My standards however are bible standards so I know my motives were always pure and good, everything I did I did for him, not for gain and indeed it took it out of me plenty times but I still carried on.   The family were always happy to leave him to me from week to week, year to year until he asked for this blessed kitchen!  Two years I had fended off this as I knew the work would all be down to me.  Indeed when going through all this at the hospital Colin even asked if they would take it on only to be told no, they had no time! My neighbour who had this kitchen company fit hers told us where to get in touch with the company. it was not my doing and he was offered a very generous £5000 discount too.

Now sadly all this could have died a death we could have ignored each other for ever but no, he had to be the bumptious person he has always been so right, I am up for a fight now too.  

Javea.  We used to live here, we had our villa built here and have not been back for the last three years. It is always a bit sad to see our lovely home that we planned, designed and loved now not in our possession.  We are hoping in October all being well to go back, taking our time driving down and enjoying the trip as we know this route well, having done it on numerous occasions in the past.  It will be lovely to meet up with our family and friends that live out there and so this is a wish I truly hope comes true, though much depends of course on my ph and the changes that will be coming about.

Thank you so much to Marcmary Dyer , Anne Caroline Bowen and Jayne Venables for your comments.  I can assure you that your trust in me and knowing that I have no stain on my conscience means such a lot.

Well weekend coming up again, how quickly they are upon us.  I do hope you all have something nice planned.  We need to make the most of our time, enjoy it and live each day to the full.  Everyday brings us a step closer to a cure, that is how I look at it.  Cant come soon enough for me and I am sure it can't for you too all my ph friends.  

Warm love to you all and than you for liking and sharing this blog.

Carole xxx

Its been a funny old week

There hasn't been any change for the better with regard to my ph so roll on Monday for the 24 hour monitor.  I return to Sheffield for a further part of the study to infuse us with ferrinject, or not as the case may be.  It will be great to talk to my specialist  team then and see where I should go next with regard to my ph.  You all know by now that I hope to go back on the hickman line.  I know of all the disadvantages but for me by far the best way forward that I know of at this time.

Today we decided to head off to Leeds to pick up a few bits needed for our cruise which is looming ever so close now.    As my study is on the 15th and 16th June and we leave on the 18th to head down towards Southampton I do not  want to be rushing at the last minute.  We never know what lies ahead so always best to be prepared so there are no last minute hitches.

The weather here is lovely today so later this afternoon we are heading off for a cabin fire and a light tea whilst warming our toes!

 My daughter and her guy Chris will be joining us along with Izzy and maybe Harrison, I don't know if he is over or not but I hope so.  I am looking forward to some family time and we already know how much Izzy loves these times.  It struck me that I have mentioned cabins and fires before and I am not sure if I have made this clear.  The cabin is NOT ours, it belongs to a very good friend of ours and he has in fact for three cabins in his very extensive garden.  Plenty of fire pits too are around so we can choose which cabin to use. So you can see that though we at this time do not have a cabin, having left it behind at our last UK house we can still enjoy these times.

Follow up.......  as you can plainly see we had both the children and their parents.  A good time was had by all and so lovely to catch up with the news.  Diaries were out at the ready to pencil in dates for ours and their holidays and the dates we can have Izzy over the seven week holiday period.

How lovely too to see how times change.  Instead of me being the mom and preparing food etc for all it was my daughter and Chris that shopped and made the delicious meal that was served.  So nice to have somebody else take up the making of a meal.  One of the joys of our children growing older and taking responsibilities.  

The fire was a great success though to be honest the children loved going around watering the flowers with their water pistols and riding on the handles of the brushes like a horse on its way to Banbury Cross.  Time to go home once the children began to flag and now we too are home for a well earned bath.  The smoke does make for stinky people.  We tidied away everything from the cabin before we left and now it just needs a quick visit tomorrow to tidy away the debris from the fire, too hot right now.  

We are still house hunting but alas there seems to be very few around that meets our criteria being private as we hate being overlooked by neighbours with a garden that can take a cabin but not be overlarge as we do not wish to spend all our time gardening.  We shall continue to look, surely one day we will find the right one. 

I read a post this morning sent in by Lori Wilhelm Belmont who is asking what keeps us going  when we are tired mentally and physically from phighting ph mentally.  The answers were all so interesting and it appears that most of us won't give in to ph.  We must keep on the snakes and ladder game of the ups and downs.  We must not be defined by our illness.  We have to learn to accept that our journey is one wth many highs and lows.  Ph is a strange disease, unseen, unheard but silent and can be deadly.  We not only have to fight the disease itself but the society that doesn't understand it as it is so rare.  We have to phight for or rights constantly.  For me the key word is phight, yes I phight for the joy of living even when I can't get out of bed.  For seeing my grandchild Izzy growing up into the beautiful little girl she is, for watching her milestones, for watching my children enjoying life with their respective partners.  I won't lie though.  Yes I too have times when it seems too hard, when the burden seems too heavy.  We also feel for the people around us that have to see out struggle, for our partners/carers who carry such a load. All of this is very real but we MUST keep going, we are making memories for the people we love and care about, we can't give in.      

Living with ph is hard, no doubt about it, it is a scary place to be in and we can see no end to it, just a steady decline but I still do believe the cure is around the corner.  We have to be prepared to trial the drugs, to be the warriors taking the new meds to the next level.  We can't lie back and let the phight go on around us without determination to take up the phight  again when we have recovered some of our strength.  We must keep going. We need to be be prepared to take to our beds when we have to so as to get our strength back enough to get up and phight again and again.  Remember we with ph all understand how hard this is but we are a family and we take up our weapons and phight.  There is strength in numbers and the encouragement we give and receive on our ph page is amazing.  Lori stay strong my friend.  We are all here for you. 

I found this on my computer Facebook page this morning.  It seemed so apt due to the trauma and hurt I have gone through in the last few weeks.  Oh how this made sense so I thank the person who first posted it and I now pass it on to others who are in the same place that I was recently.

I finally plucked up the courage to say goodbye to a very good friend.  All the things going on around him were so terrible and hurting for both myself and him but family is family and of course he must  stick with his through thick and thin.  He cried when he read the letter that Colin took down for me but he must surely have understood why I had to break ties.  He himself said his grandchildren had got too far with all they were doing.  It wasn't just to me but to the wonderful hospital staff that care so much for him.  I can't begin to tell you quite how much trouble they have caused for them but I will say it is huge. For my own health and the stress I have been under it is good it has ended.  All I can now hope for is that they arrive daily around 7.00 to make him a complan and take him shopping and make him soups and be there through thick and thin and also every evening for two hours and the weekends.  I say this tongue in cheek because of course they won't.  I have no doubt they will book a holiday for all the family, my friend paying of course and then tell him again, as they did at Christmas that is is quite unsuitable for him to go. This is when they would likely wish I was still on the horizon but I can assure you all that I will not.   You have all seen me so upset on here and I have received so much support and now realise that my life has to come first.  

I took back the keys, placed his Baileys, which he keeps at ours or he said he would drink it all too quickly {we don't drink it}in his fridge and also took his garage key and put them all back where they belonged.    Two days after this my phone rang and it was his cleaner asking me where her money was as she had cleaned and she was told to come to me for money!  She also asked where the vac was and I told her to ring my friend.   I cannot feel any responsibility now as I am no longer a key holder and as I have blocked all the families calls as they were so vicious I now have peace. It does still hurt that lies have been too about me and believed.  This is the saddest part of this whole scenario.  I have accepted though that I cannot change who chooses to believe, those that know me well know the lies are just that, lies and to that end I just now walk away with my head held high and my integrity intact.   

I got to see my son this week too which was a bonus as his oh so gorgeous girlfriend Anna was up for the weekend.  When I asked what had made her come up from London for such a small amount of time she looked at my son, smiled and said "for this face" oh how cute is that.  Uni will be over in a few weeks for three months so she will move back in with him and find a job and earn some money.  I am blessed with both  partners of my two children.

Well all for now and I hope you are all enjoying your weekend as much as we are here.  

Warm love to all and thank you for liking and/or sharing, you have no idea how the simple act of clicking the like button or going on to share this blog means  to me.   It means that I can see you do read it, that you acknowledge that you have done so, it makes me want to keep writing and connecting with you all.  

Go well my friends.

Carole xxxx

He is going nowhere!!!!!!

To say it has been a few days of deep despair to exhilaration would not be a lie.  I have spoken of Roy before and lots of you know he was very near to death when taken into the hospital two weeks ago.  A rally came about after two days and then only last week we were told again that he had no chance of recovery.   Stubborn guy that he is he has defied the doctors and is now even walking to the toilet on his own!  We are all so pleased about this as you can imagine.

Plans for his new kitchen are now well underway after a few sticky moments.  The family sat with us whilst Roy told them he had always wanted an american fridge freezer and he also wants a nice new kitchen as he is aware that he will be spending much more time in the UK now.  Once everything had been explained as to why he was going to the company he was and to why he wanted to get rid of his old but hardly used cookers etc all was understood and so let us hope now for a smooth ride and a lovely kitchen for him.  I must confess that the stress of all this did make me take a duvet day which was awful as the weather was brilliant.  

Duvet days come as part and parcel to patients with ph.  My problem is I can't sit in the garden and just laze, well I could but it is rather exposed being an apartment.  We do keep looking for bungalow type houses with a private garden but nothing is ever just right  of course most of us can't have everything right, compromise is the key.  We do not want a big house.  I hanker back to the one we had before we moved to Spain which was a big one but the beauty of this was that it had the secret garden.  In this garden we also had a cabin and in front of that we had a fire built so we could sit in the cabin and pile the logs on the fire. I am hoping to find a place where we can replicate this but on a smaller scale.   Such wonderful memories I want to bring back.  

Now don't get me wrong here, I would hate you to run away with the idea that our apartment is just a tiny space, far from it.  People coming here for the first time are always very surprised at to how much room we have and how much storage.  This then leads to the difficulties in some of the houses we have looked at.  Our furniture, quite new and to us very lovely just won't fit!!!!!!  I really hate the thought of getting rid of any of it as it took us months to find just the right pieces.   So here we are, back to the drawing board.  I know it was always said we would buy the penthouse from the family of Roy should he no longer need it but in truth that leads us back to the no garden problem so we have decide to veto that idea.  Though just yards away from us is a lovely park we overlook it does not give me my own space.  

Are we in or out?

The debate goes on for in or out  Brexit.  It is no surprise really that people are confused.  All the figures thrown around by both sides drive me mad, who do we believe, which one has the correct figures, will we really be throwing ourselves into a situation as the stay in ones say of even  having genicide in the future going on here if we dare to vote for out!!!!!  All very scary stuff and it appears that the voting at the moment will be around evening the for or against battle.   I won't be sleeping the night those votes are counted, oh yes I will, just realised we will be on our cruise!  Anyway it matters not for the vote as for many years now Colin has sorted out a postal vote and they arrive early enough for people to get them posted and received in time.

Help given across the miles

I have it is fair to say been quite distraught over circumstance going on in my life with Roy and other things. I posted in rather a confused state and it came across that I needed somebody.  Immediately I posted the phone rang and it was Marcmary Dyer {Mary} to talk to me and calm me down.  Now if that isn't friendship I really don't know what is.  She talked to me for quite a while and at the end she promised she would ring me later that day to see how certain things had panned out and so she did.  It astonishes me time and time again to see all the offers of help and support  we all receive on here.

Sue Reid my friend also private messaged me and then rang later in the day, George Gaskin said he is always around as did Steven Baker who is just getting used to his line.  Julie Taylor and I have many private conversations and she said she was there should I wish to talk. Kath Graham was very supportive and talked sense! I had many many messages posted on the thread from people all over the world.  How heart warming and so it makes me aware that NONE of us on here are alone.  We have people that really care and want to give support.  What a group of ph friends and also personal friends that are there for us, thank you one and all.  

Disney on Ice

How the children love this.  Izzy is no different and Saturday was spent watching it live along with Harrison and their respective parents.  I am told that they both had an amazing time {the children I mean} though in fairness the parents appear to be having a great time too.  We often take Izzy to these ice shows and she is mesmerised as to just how quickly they can skate without falling over.  Maybe one day she will be able to skate too but not right at this time.  Izzy with her usual 'silly' posing smile.

What is happening here right now

We go for years and years here with no breakages.  We have taken things to and from Spain when we lived there with only one breakage.  Why now do we keep breaking things.  Mugs I have cherished for years have now lately been reduced to three instead of the six, one breaking after the other and now I heard a crash in the kitchen and have been told another wine glass gone.  It just seems weird that we go for many many years with none and then one after the other,  puzzling.  A trip to the shop then for more wine glasses as we hate giving friends all different types.  Another set of six is called for I think.   

Farewell may dear cousin and farewell to a walking buddy

Over the last few days I have lost my cousin Chrissie to cancer.  The illness was short and I believe she bore it as well as one can with much courage.   She died with her family around her and he funeral is to be on the 16th, the day I have my 24 hour monitor fitted.  Chrissie wants us to wear bright colours so bright colours it shall be when we go to say our final farewells.  

I picked up the phone from one of our walking group called Anne who had rung to tell me of the death of one of our walking team. Irene had problems with her lungs having been a smoker in her earlier years.  This developed into other problems but my did she fight.  She walked the hills even though it took her time and sapped her energy.  When we returned to base the exhilaration on her face was lovely to see, yes she had done it!!!!!  Now sadly she has died and we are waiting for news of her funeral.  So sad to lose her but we now have to say goodbye.

Ceramics

Blood test this morning, visit to Roy to follow and then on to my ceramics class.  I am hoping to glaze my last two pots today as time in marching on and I will not be attending the next course.  Of course I shall return, I love it but a two week break for the cruise and then this being quickly followed by a three week tour of Scotland means I would be foolish to spend so much money on a class I would rarely be in.   Of course these holidays could change due to the results of my 24 hour monitor which I know will show drastic changes in my heart as I go about every day business.  On the plus side we are ALWAYS encouraged to take holidays.  The staff at my hospital work around our holidays as well as they are able.  Should they however decide the line is a must and a quick one inserted at that then of course things will alter but  doubt that will happen yet.  

Hospital here I come.  Blood test out of the way then I shall visit Roy.  The day is a beautiful one and I hope it is where you are, enjoy it please.  

Warm love to you all and a huge hug for liking and sharing this blog.

Carole xxx