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

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