Update on my trial and other weird things!

The visit to discuss my acceptance onto the trial for tocilixumbab did not go as we planned.  It is always very important when going on any trial or study to be honest and answer all questions correctly.  In this instance I did all that, ticked all the boxes but then told them I have been suffering from a few bouts of uti's.  The doctor taking down all my info went into more detail and said it may be that I won't be able to take part.  The reason being that apart from the uti's I also have yearly colonoscopies to remove polyps just in case they turn cancerous.

Now this drug I was hoping to trial works well for people who are on it who suffer from rheumatoid arthritis without too many side effects.  As for me well......... the medicine lowers the white cell count in the body so people are more susceptible to infections and if you are pre disposed to cancer amd uti's then his would not be great.

We need our white cells, our army, to fight infections so if there is somebody who already has certain issues regarding infections then for their own sake they will not put them at risk.  Still waiting to hear as they are talking to Papworth but I believe this will not be a trial for me.

We did discuss another treatment.  I have touched on it before.  This is where they actually burn the ends of the nerves in some parts of the lungs,  It is not a cure but there is the hope that once they are burnt they stop some of  the hypertension.  I believe the operation takes around an hour.  Only five people have had it in this country.  It is very much a last resort, very new, very novel.

I am certainly too well right now to go down this route.  I have read some people abroad have died about three  months after the op due to sepsis and other things so even if I was allowed it, which I am not, then it wouldn't be for me.

Holiday!

Yeahhh. We leave at 3.00 in the morning to take our taxi to the airport.  Though we rarely take the early flights this time we felt we should.  It means that we can be in and settled by early afternoon and this is very important as we have so many people we wish to see and so many bike rides, mountain walks etc for Colin.  I can't begin to tell you how excited I am to be going back to where we lived.  We made so many really lovely friends and we're fortunate not to have lost them since we left.  Packing is done so we just want our day to go well, sleep a little and away we go.  Bedding changed nice and fresh for our house sitter We just have Izzy to collect from school, always a joy and Colin will take her for her swimming lesson.  

With regard to packing.  I take a very easy option.  It is that time of the year when some of my summer wardrobe gets donated to charity shops, no call for them here now our weather has changed.  So here is what I do.  I get all the clothes I want to donate to a charity shop together, there is nothing wrong with them but will want a change next year, and I take these as my wardrobe for my holiday.  At the end I wash them and donate to charity in Javea.  Saves me carrying them back home and I come home to a wardrobe tidied out ready for winter clothes.

My INR clinic

My INR is very low due to all the antibiotics so my warfarin clinic came up trumps.  I attended the clinic at 8.20 and received my call from the phlebotomist at about 10.00 . She was concerned as to how low it was, changed my dose, asked me to have it done is Spain and then wished me a lovely holiday, and people knock our NHS,  I love it.

This is a very short blog as since I last wrote I have done very little due to hospital visits, two to my local one and then my wonderful Hallamshire.  I missed seeing Gem Cousins but we are sure our paths will cross again!

Now the awful woman that posted comments on my blog has been deleted. Well I hope so.  I deleted her remarks and then a lovely friend reported her to the admin side of Facebook so I hope to goodness she does not turn up again.  I had to smile at my lovely friend Mary who was very concerned and asked it if could be Roy's granddaughter.  Now I know she likes horses, she kept a couple but in fairness to her there would be no way she would post pictures of herself in such a compromising position.  It made me smile though at the thought.  So hopefully this is the last time this awful person will be mentioned in my blogs.

I think the fact I could not block her of my Facebook page is that I was using my apple iPad.  Whilst there is much that can be done on an iPad there are some things that cant and in this instance it only showed about ten people with the name Horseylady.  She no longer has access to anything I write hopefully so I can breath a sigh of relief.

So there it is, very short blog.  Thank you all so much for reading and for clicking the like icon, it means such a lot.  No ph news on here this week but i shall search and see what is on the ph media in my next blog for the newbies, and indeed all of us with ph.  

Warm love to you all

Carole xxx

I was really worried there for a moment.

Just taken a phone call from Papworth research team to ask if I had told anyone about my going on to trial the drug Tocilizumab.  Well the answer was an honest one, yes of course I had as I always try to keep my family and friends worldwide up to date with the news and this was my latest news.  I was concerned that I had broken a confidentiality rule and was horrified at what was to come next.  The answer was that all was fine.  It appears that somebody had read either my blog or post and asked about it at Papworth but they could not say where they knew about the trial and gave my telephone number!  Anyway it is all good.  Yes we are encouraged to speak about any trial we are on and she was pleased that I spread the word about each and every trial.  Her concern was that there had been a breach of confidentiality at Papworth end of things and this was not the case so everything is OK.  Monday is the day for my right heart cath and then holiday and back to begin the actual trial.

Just  beginning to get myself together again

We had Izzy for three nights.  What a delight she is but it is all go when this child is around.  She arrived bathed and ready for bed on the Friday when Danielle and Chris dropped her off and immediately began teasing grandad and getting him to play games with her.  She is so good but always busy busy busy, you know how it is with children.

Saturday we decided to take her to two museums.  I am hoping she learns to get to love these but not a chance right now. She refused to go into the rooms at Bankfield Museum as it was "full of dead people".  Despite us telling her again and again it was just  huge dolls dressed up she would not have it.  We went on to the toys of yesteryear.  Made us both feel old as most of them were from our era!  These amused her for all of two minutes and then we had to move on again and so it continued.  She did like the dressing up room where we both donned hats and grandad took our picture but that said, enough was enough so on we moved to Shibden Hall, home of Ann Lister and very beautiful it is too.  I began to go "off" in here and had to stop a while as the pain in my chest made me feel so sick and faint.  A short break later and we continued to the car where I said I would be happy to sit whilst they went on the train and the swings.  Izzy held my hand to help me back to the car and looked to be very concerned.  After a rest I came round again so all was well.

Sunday was party day for Izzy and I took her to her friends party and stayed to watch the magician, very good he was too and then on to buy her new school boots.  The two of us then, after bath etc went to curl up on my bed and we watched a film together, this is cuddle time with grandma and then off she went to sleep.  I must say it was hard getting her ready for school the following morning as I knew we would miss seeing her smily face and watching her skipping throughout the place.  I am sure that we will have her soon as the move to their new house is very imminent and we will come in handy then as babysitters.

PH exercise class

This was my penultimate class and so I had to go a few minutes earlier to have my assessment done before the rest of the class arrived.  They were thrilled as to how my times and levels of  being able to do or not do things had improved.  I really did not have the heart to tell them that it is just the nature of the beast for us.  When I went for the initial assessment it was not a good day so my level of being able or not able was not so good.  Monday was a pretty decent day as far as living in the ph world goes so I was not surprised at all.  They are a lovely team and I shall miss them very much.  I have signed on to Breathe Easy to see if that will help me at all.  I also met two people who I like very much and we have exchanged telephone numbers so  hope to keep in touch and see how they go on.  One of these ladies knowing how much I love lemon meringue pie, though rarely have it for calorific reasons had made me a pie!  How lovely that in a place we are all at due to health reasons I made two good friends.

Implanted pump study

http://www.phanews.org/news/implanted-pump-delivery-study#.V_6i1PS6t_o.facebook

Gosh, this sounds incredible.  Instead of changing and re filling pump every 24 hours with all the risks that come with it this one appears to only be filled ever 47 days!  I wish i could be offered that instead of the old ones we have.  Looking forward to this study moving forward and being available to all of us on iv lines.

Haiti

The level of damage and destruction done here is so horrific and the death toll continues to rise.  I still never found out the fate of the young boy we sponsored here for five years between 2006 and 2011 after the earthquake around six years ago. I continued to send my sponsor money but sadly never heard if he survived this quake or not.   I was surprised to read in the Independent that they are urging people not to give money to the appeal by the American Red Cross,  One would wonder why but the answer became clear.  The trust in them is low due to the 2015 report that shows a lot of money given by people such as us has been squandered.  Well I have news for them, they are not the only charity that squanders money.  I have refused to give donations here in England as when I see the size of their palatial buildings right in the heart of London I can see exactly where my money would be going.  It would surely make more sense to build or rent buildings out of the heart of the big towns where it is certain costs will be high. Move away to the edgers of the cities and obviously dave money on the land to build and the rates etc.  Surely as a charity the first thought should be about how much we can get to give away in aid, not how imposing can our offices be.  Of course there may be a perfectly valid reason for them taking up prime expensive space in the big cities but I cannot think of a single one.

Looking at house designs

Not that we are getting very far just yet but is is exciting to look, indeed we were told to by our architects we must be looking so as to give them an inkling of what we liked and what we loathed.  We are sill debating log burner in the house or just the one in the cabin outside.  See I hate the tiny log burners that some have, it is all a matter of preference and I like mine to be quite big taking up all of the fireplace.  I do not mind the hearth in front but I do not like where there is a space at each side.  As we are maybe going eco friendly though this may well be overkill.  Maybe we just decide on a different fire as after all we will have a log burner in our cabin, the type with a pipe showing that leads to the outlet.  I do find myself gazing into kitchen showroom windows just to get an idea of style etc.  I think we will have to really sit down and really consider lots of things we want in this house and begin making lists.

I wish I could be more like the young ones, more laid back.  Danielle and Chris do not seem to be too concerned with any of this, they just know they will sort it, they will find the right kitchen and bathrooms they want as they want to change the ones already in.  I am sure they are not stressing about this at all.  They are not even worried about being given a date to move at the last minute, me I stress! Aaaahhhhh what wouldn't I give to be that age again and know that I had the ability and the strength to just go with it.

Aberfan disaster

I cant believe that this happened 50 years ago.  For those that do not know the story October 21st marks the 50th anniversary of the terrible disaster that took the lives of 118 children between the ages of 7 and 10 and also 28 adults.  The children were waved off to school as usual and this school was close to the coal tip from a nearby colliery.  Not long into the morning, in fact just 15 minutes after the register was called  the tip collapsed sending down over 100.000 of waste and this engulfed the school and a few surrounding houses.   The children that were not killed instantly were smothered.  It took a week to reach some of the dead.  I well remember the horrific sight of row upon row of coffins laid out next to each other.  To make this even more sad is the knowledge that just a few hours later they would have finished for their October break and the school would have been empty.

As I reflect on this it makes me wonder what those children and teachers would be doing now had this catastrophic event happened.  More generations would have been born, more lives enriched by this.  Sometimes life is incredibly sad but the people of this village pulled together  to form a support group called Aberfan Young Wives Club. In the depths of despair they reached out to each other and gave love and support and that club still exists today.

We too reach out to each other and offer knowledge, hope and support but I pray this and sites like it are no longer needed in the near future because a cure is found that makes us redundant.  

What is with the clowns!

In the news the craze that began in America of the scary clowns has reached us here.  I feel they already have two big scary clowns already in the form of Trump and Clinton so why do they need more.  We too have many in our parliament here in the UK, way too many.  Many people have phobias regarding clowns and to deliberately target young children with scary faces means that now even the big smiley faces seems to be so cruel.  Here we are beginning to fine them around £70 for each one found but our police force has more important things to do than to catch them and fine them.  I hope it all goes away after halloween, though I doubt it.  Once people realise they can have an impact, even a bad one then these trends hang around awhile.  I hope my sons girl is OK  She has a real phobia and lives in London where we are told there is quite an influx of these spooky costumes.  One idiot even ran after children with a real chain saw!  How very cruel is that.

OK enough said, sorry to my American friends, not really knocking your candidates for the upcoming election but the debates I have watched in the middle of the night seem not to be about politics but to be about point scoring.  I hope whoever wins does a great job for you in the coming years.  I love America and its people and wish them all the best.

Met up with Marc and Mary Dyer this morning for a coffee.  Mary is doing OK, one or two things going on so back to clinic in a month but still ok.  She says thank you to all those wondering where she is.  She just needed a break from Facebook to concentrate on her studies for the time being and wishes you all well and says thank you for thinking of her.

Go well each and everyone of you.  Thank you again for clicking the like button and also or those that send a comment.  All gratefully received except for one I found only this morning on one of my earlier blogs .  It said something like this.  This lady lies, rubbish and was signed by horsey lady.  Now I know some of you will look her up but trust me you shouldn't,  She is a disgusting low life creature, not on my friends list for sure and the pictures are terrible. If you ever see her on my blog again believe me I have no idea who she is or where she comes from.  All I will say is the horses butt looks better than her face.

Warm love to you all

Carole xxx                

Please give us a break!

I had three "good days".  Good for a person with ph can be likened to somebody without ph that you think maybe, just maybe this flu is going away, its on its way out.  It is still tough to do things and the lethargy is very much still to the forefront but you manage to push past this and get a few tasks done. So there I was living in cloud  cookoo land and feeling that maybe my ph exercise classes were helping and I would not go back to the bad ph days.  Not a cat in hells chance as I realised on waking this morning after the strangest dream.( more of that later) and the knowledge that yes, here we go again, another bad ph day.

Typically today is the day that we are having a family meal. Why couldn't I have just been granted another good ph day.  My daughter is going away for the weekend with her guy for a well earned break and we are having Izzy so I thought it would be nice to have a family meal and to see where we are all up to with regard to our house sale and land.  I have planned a very simple meal, easy to cope with as Colin is doing a school run for Phoebe and will not be back until 6.00.  I need the meal to be at least almost ready for when he returns.  Chicken and ham pie is the order of the day with tiny roasted potatoes and vegetables.  The pie is now prepared, it just requires cooking, veg is prepared and the potatoes cannot be started until 40 minutes before serving so they are a last minute thing to deal with.  So now I need to rest, will think about dessert later. 

 We are beginning to line things up for us to do with Izzy starting with a concert on Friday night to see her cousin Phoebe perform singing and dancing.  Izzy will love this anyway as she enjoys concerts but with Phoebe being in it then the will be the icing on the cake.  As I don't "do" nights very well these days I will stay home and rest.  We have not got around to planning the other two days we will need to get together and have discussions and of course check out the weather.  So busy times ahead and I now need for my ph to give me a break family time is important so go away please!  

Strange dreams

I read once somewhere that we do not dream in colour.  I know for sure this is not true as I mostly remember my dreams and they are always in colour.  So I woke this morning after having a strange dream. I was with Mary Dyer, another ph patient and for some reason I was taking her to look around the house I lived in with my children until I met Colin and then all changed.  Now  loved this house as we had it built for us, we added on rooms and bathrooms over the years as the children grew.  I remember being excited in my dream as we walked to the door.  I noted the red of the drive and that the door was lovely and clean.  We entered into the kitchen and was invited to sit down immediately as lunch was ready.  This was a surprise as we were not expecting to be fed.  On looking around the kitchen I noticed that they had changed the units and they were an eclectic mix of colour and design, it looked amazing.  First course of this meal was salmon mousse and as  I was eating it I distinctly  remember thinking that I would not be hungry when I woke from this dream!  The second course was cumberland sausages with a rich onion gravy, I did not see what was to accompany this  as I never lifted a serving  dish lid.  The man that owned the house said to his wife he would take "this" out to the van, "this" being two huge slices of pork that he carried out speared on just a fork, no plate.  He was wearing a lovely crisp blue and white striped shirt.  

Unfortunately before I had a chance to see round the rest of the house I woke up!  I knew as soon as my eyes opened that it was going to be "one of those days"  With wobbly legs I managed to make the pie between resting at each stage of the making of it.  After an hours rest I decided I was not going to waste  even more time out of my day so began my blog.  

Statins

I was horrified when my doctor rang and told me that as a result of blood tests my cholesterol was 6.4.  As a result of this she wanted me to go on a low dose of statins,  20 mgs and see how I get on.  I instructed her to first of all ring my primary carers for my ph and discuss with them first before I began this as I am never sure how one medicine reacts with another.  The end result is I am on this dose and then will take another blood test after three months.  We are both a bit shocked that my cholesterol is higher than Colin's  being that he is the one that eats cheese and butter and dairy products, I rarely touch them.  If we have red meat once a week it is the most that we eat this.  We use olive oil too on salads etc so we are perplexed.  Maybe I am just one of those people who have this in my genes, who knows. Anyway there it is, yet another tablet to add to the mix of the ones I already take, it does make me wonder sometimes how it can be that we can take so many tablets and not somehow be poisoned by them all to the point of death.

In trouble again 

I was told off yesterday by a member of the support group who said that she was not receiving as much sympathy as she expected by the group as she was very poorly with different problems to cope with.  At first she had my sympathy as I care very much for each and every person we have on our support page but after sending a few messages back and forth I began to realise that this was going nowhere,  I was supposed to get onto the site and tell everyone to give this person more sympathy, she was cross that I had asked details of her diagnosis to begin with and so it went on and on.  In the end she said she was leaving the group.  I explained that there was nothing  I could do if people did not respond to her posts.  If she had received abusive messages or bullying then that would be different.  As she went on to tell me how sick she was, and yes she does have different conditions I needed to tell her that we ALL have problems on here, we are ALL very poorly and we all have our own problems to deal with too.  As she had only been a member for around three weeks her name would not be recognised yet by everyone and to give it time.   I begged her to stay awhile and see how it went but no, she has left us.  

Of course it appeared that it was my fault as I did not monitor her post closely enough to see how people responded to her.  Now with the best will in the world we have over 1600 people on here.  I think Paul and I do a good job all things considered.  As others on here that admin ph support groups we that do this also suffer from ph.  We do not just spend a few minutes a day on this site.  We spend a big chunk of our days adding people to the support group, sending messages asking for details of those wishing to join, we take pride in trying to sort out any problems that do come along but we too have ph.  We have our duvet days, we have all the appointments that come with this disease.   So with the best will in the world we cannot monitor each and every post and then monitor each and every response.  We trust that where there are problems they get reported to us and we try to deal with these problems fairly, listening to both sides of the argument.     So it was that she left the group, I had two minutes of regret but then decided that I must move on, I was not got to get poorly stressing out when she clearly had made her mind up.  Very sad to lose her but we all want something from this group but I feel she expected just too much from us all.  

Down and out for the count

I left the blog yesterday as my condition deteriorated as the day progressed.  I was gutted to have to ring my ph exercise class and say I would not be attending.  I know I would not have been able to do a single exercise and I love this class.  I sat in the chair feeling terrible.  

Time to collect Izzy from school, something normally done by grandad but he was busy collecting our other granddaughter from school miles away. It would have been irresponsible to drive my car so opted for my mobility scooter instead.  Sods law that when I took it out I realised it was low on the battery power.  Still I just hoped I could make it to school and back.  Izzy was happy to see me and jumped onto the scooter with me,  I explained the situation about having not much power and she was happy to keep checking the battery indicator for me all the way home.  On arriving at the garage and parking the scooter she told me to hold onto the walls and she would open all the doors for me.  Lovely but sad too that a girl of six needs to take care of grandma.

The meal went well, everyone enjoyed it and I even managed a tiny piece of the pie before I one again took to my chair.  Eve when not feeling well family can make you forget yourself for a while.

PH news

This link came up on my newsfeed and I think it says it just how it is.  I believe for the newbies it would be great for you to show family and friends as it explains all.

Every Breath Matters with Pulmonary HypertensionGet to know about pulmonary hypertension, with this video featuring patients and team Phenomenal Hope as they take you in a journey through their...pulmonaryhypertensionnews.com

Sad sight to see

I attended my warfarin clinic today and was sickened to see a young, very expectant mom stood outside the maternity unit wearing her dressing gown and slippers and smoking.  Now the very fact that she was so young told me that she obviously knew of the dangers of smoking for her own health but to put her baby at risk made me feel very sad indeed.  Enough said.

Time to go as se have an appointment in town today.  Go well and warm love to you all.  Thank you for reading the blog and a huge thumbs up to those that click like .

Carole xxx

                                                                       

The long and lonely nights and the goals goals goals

2.10 a.m.

The norm for me these days is that I am  awake for hours in the night.  My breathing is laboured and I sit up to enable the air to reach deeper into my lungs.  Every minute seems to stretch into an eternity and I am bored, bored bored.

The night doesn't begin too badly as I use this time to catch up with my admin for the ph website that I help to co admin.  Following on from this I then read the newspapers online, but what then...... the night stretches on and on.  I hear an occasional car passing as I like all the windows open as wide as possible and I wonder who is in the car, where they are headed, where they have been etc, boring but not enough to get me back to sleep again.  So what do I do, well get up, sit at the desk and begin this weeks blog.

Hospitals, hospitals, hospitals!

What a week it has been.  It seems almost every day has necessitated with me going to the hospital for one test after another or to a ph exercise class.  I generally attend once a week to my local hospital for a warfarin check and as this time I also needed a fasting blood test I decided to do them both together.  How stupid was I then that on the morning that I was to attend my weekly warfarin check up my husband handed me the tiniest piece of a banana that was left after slicing the rest to top off the porridge for Izzy.  Without giving it a thought I popped it into my mouth and continued to get ready to attend the said appointment.  It wasn't until I sat in the car that I realised what I had done.  That tiny mouthful of banana meant that I could not take my fasting blood test, beggar!  I could not leave the two tests until the following day as my weekly warfarin one was needed now.  So it was that I attended one day for warfarin and the following day for my fasting bloods.

Between these times I attended two ph exercise classes and one day I went for my flue jab.  I just could not get away from anything to do with hospitals, damn ph for this.

Izzy and dentist

Following on from my being bloods taken we were to take Izzy to a specialist dentist got a small filling.  No she is not given many sweets at all, far from it but having been born with no enamel on the back of her teeth we were told she would more than likely need these before her baby teeth fell out.  On a visit to have her teeth checked and painted with a form of fluoride to help protect them a cavity was detected.  In our family we do not believe in lying to our children about pain so when she asked if it would hurt we told her it may hurt a little as they would need to scratch her gum to numb the area where they were working.  She accepted this and my heart skipped with pride when we saw her happily skipping into the dentist for the said procedure.

The two dentists taking care of her were amazing!  They explained to her what would be done though they called each piece of apparatus being used by a different name to the norm, i.e. the drill was a vacuum cleaner cleaning all the bad from her teeth, the water jet was a jet steamer wiping up the mess etc.  She was very happy to don the glasses and waited relaxed in the chair for the process to begin.  They began by numbing the mouth with the anaesthetic ointment and then proceeded to inject the area.  No problems here, even her little hands did not move in the chair as she was so calm. Drilling commenced, again easy as pie and the filling was soon in place.  She got out of the chair and we proceeded to go into the office next door to make an appointment for another two tiny fillings that they had found  and needed to be seen to and then ......  she burst into tears.  The problems was she said he mouth felt funny.  No it didn't hurt but it felt fat!  well most of us have been here and yes our mouths do feel odd after the injections used.  We told he it would wear off in two hours but she was not happy.

We took her back to ours afterwards as I wanted to give her a drink and a bowl of soup before taking her back to school for the afternoon session.  No drink, no soup was eaten or drunk, she flatly refused. We did have her laughing over a game of snakes and ladders and then I said she must get back to school for the afternoon session.  Tears again, though she loves school so I think she wanted to be molly coddled for a while longer but I am pretty tough when it comes to schooling. I  believe every day lost is a day of schooling that needs to be caught up with so better not to miss in the first place. Off she went to school amidst a few tears.  When we spoke to her later though she was happy and had been the centre of attention at school and admitted the whole experience had not been that bad.

PH research confirmed

All is in place now for me to go and have the first of my appointments for my trial . I am to go to Sheffield, my specialist centre to sign all the paperwork and to have the usual pulmonary function tests, bloods, 6 minute walk, urine and ecg.  Following on from that we are to have our holiday and then return for the two days of intense testing and my right heart cath.   I am so hoping for some improvement whilst on this trial as the alternative its the hickman line but we shall see, what will be will be.  My wish would be to go for a while breathing without thinking, taking deep breaths with no effort, will it ever happen in my lifetime, well I remain ever optimistic about this.  If we have no hope then we have nothing and so with that hope in mind we need to set ...........

Goals, goals goals

It would be so easy for us all to just sit in a chair all day, easy but boring and senseless.  We have been given a life and no matter how compromised we need to try to use it to the best of our abilities.  So for me I like to have a goal, something to achieve, something to work towards.  In the beginning it was to meet Izzy who had not been born at that time, then to see her go to school.  My goals alter as months and years go by and now my latest goals are ..... seeing lots of my friends from Javea in Spain.  To that end we are so fortunate as two of my friends have volunteered to get in touch with people, set a date and time and book a couple of venues for a catch up and meal so very happy days ahead.

One of these lunches will be in the golf course restaurant that was very close to where our villa was.  In fact it was on the walk back from lunch here where we all realised the gravity of the situation with regard to my health.  The beginning of the walk back through the grapevines, on through the fennell fields, a stroll back through the almond orchards was fine and then as we began to climb up toward the villa my heart just wanted to give in.  My face was sooooo red it took 24 hours to calm down.  Anyway the rest is history and here I am but from where we are meeting for lunch and catchup I will be able to see my lovely villa nestled into the hillside amidst all the woods. It will be sad but at the same time lovely to know we have made a mark on the landscape

We shall meet with other friends over the course of the holiday and Colin is hoping to join in some of the walks the Costa Blanca mountain walkers are well known for.   Whilst he is doing this I will be resting under the naya and friends will visit me there.  We are so fortunate that friendships made when we first arrived in Spain are still going on, wonderful times ahead.

Our new build

Very early days here yet but we have met up with two lovely architects who will have the responsibility, along with us of course, of designing the new house.  We told them we wanted something a bit different and though too early to say for sure there is a strong possibility we shall have an eco house built.  They love the land, the position, the views and so bearing all of this in mind and our needs we will work together so once again, another goal.  This goal being that I am determined to live in this house and enjoy all that it has to offer us.  I will update on all of this as things become clearer.

Sad news

We lost our Canadian ph sister Cindy Mallory a couple of days ago.  Her husband came on and told us that her fight was over and that she was resting peacefully now.  How heartbreaking to see the post but of course we must see them, we need to acknowledge that the fight is a tough one and that we lose friends along the way.  Our hearts go out to Cindy's family and friends who saw her battle on unit the fight became too much.

Another post that was equally heartbreaking was one where we learnt of the death of a very young girl Erika Cowie from Swindon in England.  She had only just celebrated her 18th birthday and Stacie Pridden who posted the news was, of course, devastated as they were good friends.  To lose any of our family affects us all deeply, we all feel it as a personal loss to our community. To lose one of our ph sisters at such a young age is so cruel a blow.  Once again our thoughts and prayers go out to the family and friends of Erika, such a brave girl who fought the fight so hard until the end.

Lyric Parsons the baby born with severe ipah was so incredibly poorly.  The medications were not helping and so in the end they had just one more action they could do.  This was to put this tiny new baby on a very toxic medication flolan.  It was very much a last resort for this beautiful baby and thank goodness a post was sent for all to see that she is responding well to this medication.  Her parents can now hold her at last, how wonderful this must be.  I hope and pray that she continues to respond well to this drug and that in the not too distant future all these ph treatments become redundant as we come ever closer to achieving that goal.

PH Conference UK

What an absolute delight it was to hear the news that a date has been set for our longed for conference again.  The venue is the same as we have had for the last few conferences as it would be hard to beat.  This beautiful hotel lies nestled on a golf course in the beautiful Oxford countryside.  Our diaries have no doubt been pencilled in with the two days in May, babysitters are being called on to put these dates in their diaries too as they will be needed so their family member with the condition can attend this very important event. These conferences are a source of information but equally as much there is the association, we meet up with ph friends we have spoken to on faebook, we meet and make new friends too.

Well it is time for me to fill in the paperwork needed so I can once again get my bloods done.  This time it is the full blood box that will be then sent off to Sheffield laboratories with my blood to be analysed and check that my liver function is not impaired with the toxic medications we take and a host of other things that this blood is checked for.  Most ph patients have this done monthly along with their inr blood test that can be done as often as weekly in my case.

Once again I take leave of you all and hope that you stay as well as you can do.  Thank you again for the likes and the shares, it shows me that you actually do read the blog!!

Warm love to you all

Carole xxx

Heartbreaking to see these PH babies

Can you tell me you can watch without crying?

Waiting on a cureNovember National Pulmonary Hypertension Awareness Monthyoutube.com

I never post my memories from years ago that show up on Facebook, never until now.  I watched this video again and I did wonder just how many of these children are still alive today, how many had transplants and how many died before their transplant could be done.  If you are a parent, a ph sufferer, a carer or have brothers and/or sisters please please if you watch nothing else today watch this video.  it is truly heartbreaking to see this but it shows why we are in desperate need for a cure.  

Meeting PH friend at last

Marcmarydyer, another ph patient and I talk often on Facebook ph pages and we have spoken a few times on the telephone, always a joy to speak.  One of us, don't remember which one, made the discovery that we didn't really live too far apart, particularly if we both drove towards each other!  So it was that we set the date to meet one morning in the lovely village of Hebden Bridge.  Both having ph we could not be sure either one of us would be fit to meet when the day actually arrived so it was a pleasure that the disease gave us a bit of a respite and we managed, so very pleased.

I felt an instant rapport when I met both Mary and her hubby.  Mark left us too it whilst he wandered the cobbled streets and strolled in and out of shops whilst Mary and I sat down with a hot chocolate.  If either of us had any worries about there being stilted silences they were quickly dispelled.  This was a ph sister that I felt at ease with instantly and the conversation just flowed.  Of course the constant hospital visits came into our conversations, we are never far away from another appointment or blood test, we talked of the amazing staff at Hallamshire Sheffield where we both attend, we talked about children and oh so many things.  I don't even remember how long we were in the cafe.  We both spoke of how fortunate we were to have our lovely husbands to help and support us and we took our hats off to the ones coping with this terrible illness without a partner,  we acknowledged neither of us could do this alone.

My sister joined us for a while as we needed to exchange presents and she lives in the village of Heptonstal so this was a very convenient place to meet and we all laughed about so many things. Gill my sister had bought me a gift.  It was actually a heart shaped piece of jewellery with beautiful colours imbedded into this heart.  These were actually my moms ashes!  It sounds a bizarre gift but it is really pretty and it actually feels nice to know that my mom is close.  She rang me afterwards to say what a lovely person Mary was and that we should meet up often.  She need not worry on that score, Mary is now a real friend that I know in the flesh, she can't get away from me now!

The beauty of meeting up with somebody else with ph is that we know exactly how it feels, we know of the tiredness and the lethargy that comes with ph.  We know of the pain in our hearts, the palpitations and of the sheer debilitating condition we live with all the time.  We also know that we have to live the life we have and make every moment count so we were certainly not feeling sorry for ourselves!  We laughed over the slightest things.  For sure there will be man more meetings, this is a friendship meant to last.  Thank you Mary for a lovely morning and thank you Mark as I know you are her carer and the chauffeur also!

Following on from this meeting I decided to see if we could meet up with more of my ph brothers and sisters and so to that end we are now in the middle of sorting out a date for a christmas lunch and catch up face to face.  So looking forward to this.

Holiday booked

Well we risked it and we have booked or holiday to Javea in October.  We have begun messaging or telephoning our friends to ask about a meet up.  We were looking for a villa to rent for a week and hoped to put ourselves on our family Mike and Gill to see if they could let us stay with them for the first four nights as our holiday is for 11 days.  The e mail that came back said that they are not in their villa and so we were welcome to use it for the whole length of our stay with the proviso that Colin cleans the pool.  No problem with that so we booked our tickets and we fly out on the 19th October.  Oxygen has been approved on board {I take my own concentrator but still need to get permission from the airline } fit to fly letter has arrived so I am so looking forward to going back and to make more memories in this place that is so special to us. 

Accidents happen with low oxygen

Because we with ph have a problem with our lungs not being able to oxygenate our blood as much as the norm we do suffer memory loss.  I know I can be told something one minute and forget it the next.  So it was the case with the oven saga and how I was hurt.

Colin had decided to clean our oven and when he had finished a tradesman called , so he had to go and talk to him, leaving the oven door open to air. Although I KNEW he had been cleaning the oven I should have taken more care but I just forgot. The result was I walked around into the kitchen and slammed into the cooker door HARD with my legs. I felt so sick as it had really hurt me with the force. When I could stand to lift my trouser legs up I saw that one leg had the flesh torn away and was bleeding and the other had a big swelling and the blood underneath was clearly visible. 

I just know that these bruises will take weeks to clear. I have declared that when we have our new home and my new kitchen my cookers will be higher up and with the doors that push under so this cannot happen. I know my friend Roy who lived upstairs often banged his legs on his oven door and I worried so much about him but it never crossed my mind would do a similar thing. It does emphasise though that we really are vulnerable due to oxygen shortage and need to take particular care.

My breathing is pretty rubbish today so I am feeling very lethargic.  However there are things I must do so I need to muster up the strength to get bathed and dressed.  Nothing I do though will give me the energy needed to wash and dry my hair so I will just wet it and leave it at that.  The resultant curly mass will upset me but straighteners are out of the question.  

I must confess here before I leave that I did question to Colin if I was making the right decision to trial yet another drug instead of going immediately back onto the iv hickman line.  After talking about it we both decided to stick with our decision knowing we had a promise from Prof David Kiely that he would take me off the trial and immediately onto the line if he felt that my condition demanded it.  All I can do is trust my A Team and hope for the best.  

The weather here is beautiful, would love to do a canal walk, here is hoping my pressures get pushed back one way or another to allow me to do these walks again.  In the meantime thank you all once again for reading, for the act of clicking like and or for sharing.  I feel I know most of you well through Facebook so these likes mean a lot.

Love to each and every one of you and have a good day.

Carole  xx

Amazing PH News

My ph hospital visit astounded me!

This was a return visit after the ferinject study to see if I performed better, worse or the same.  My answer was the same and it appeared that the results available at this time showed that too except for a small change of my heart. However I wasn't there just to discuss the study but to talk about having the Hickman line fitted again as my condition deteriorates.  

I bumped into Charlie the day before my end review who said it would be David I would be seeing as he would be working over at the other hospital.  I was a little concerned about this as David was one of the doctors who did not want me back on the line so was a bit tense.  I need not have been as it happens.

My MRI showed very little change, a tiny margin for the worse and though my pressures were rising my heart was coping quite well.  However as we talked about where I was going next in my ph journey he dropped a bombshell that really made us stop and think.  Before I did the study for the ferinject I had been waiting for another trial called Transform Uk an open label study of Tocilizumab.  There are to be 21 people across the UK on this trial  At that time it was not available to us so I switched to the ferinject study.  Now I have completed it I can, if I wish, join the study for the tocilizumab as we are now allowed to trial it. I need a rhc and many other tests but if all goes well I should be on this trial at the end of October . If it seems my breathing gets worse he will take me off the trial and I will immediately get my Hickman line inserted and begin the iloprost treatment again.  I will be the first on this study from Sheffield so if anyone else across the UK  who reads this blog is on this study please tell me how you are doing.  

We discussed another study I had been on and completed and the results are out now but at this stage only to the specialists who were part of it.  For that reason I cannot yet divulge the name of the study or the meds but I can say that it proves that the medicine helps patients with ph so yeah!! By taking part in this study, there were only 20 in Sheffield on it has helped in the developing of another drug that will one day be a player in helping to push back ph.  It made me feel proud that my small part in agreeing to test the drug will lead to its use for many ph brothers and sisters worldwide.  

Whilst I was in his office he told me of another trial, only one person has had it done at this time.  This trial ( and he said I was not ready for this ) actually burns inside the pulmonary arteries to see if they can shrink the blockages and so aid breathing.  As it has only been done on a pig and one human we all agreed this was a very last resort.  

On one of the trials I did I developed dreadful neuropathy but I insisted continuing until the end.  The result of that trial showed many people on the high dose such as I was on did get neuropathy the same as me but that at a lower dose it was tolerated well.  My neuropathy has just about gone after two years so I am now told I can gradually wean myself of the meds for this slowly.  It will be good to get rid of one of the medications I take.

We discussed lowering my meds as they appear to give me a very low blood pressure ergo the dizziness and tiredness etc.  We all agreed though that as the pressures in my lungs are already rising more and more even with the drug then to halve this med would mean my heart would be even more under pressure, 

Selexipag

Again this was discussed and David said he was going into another meeting in two weeks with all banners blazing that we should be allowed selexipag in the U.K.  He is very disappointed at NICE and their decision  not to allow it us yet.  I know he will do all he can to push for us again.  It is going to be interesting to see how he gets on, who knows after my new trial ends I may be allowed selexipag, something to hope for.  

On leaving the office after being with David about one hour we bumped into the very lovely Paul Sephton, he is the ward manager,  A super guy he often had us laughing when he would come on the wards.  He came over to say hello and told me he had been at a conference with hundreds of others and lo and behold who should appear on the screen in front of their eyes  but me!  He pointed to a colleague and said hey look, that is Carole Ayrton.  I was talking about how it was ok to feel scared when first diagnosed but there were many people going through the same journey and through support groups we could become strong etc.  This is apparently going to all centres that deal with ph and will be shown at all conferences.  I as so pleased to play some part in supporting the newly diagnosed and helping them come to terms with their illness. 

So our visit ended with us saying goodbye to Mercy, my trial coordinator, and that I would be seeing her in a months time.  This  time I shall  be staying in a better hotel, one with lifts, the one  I have been staying in has no lifts so can be a struggle with stairs. For these trial visits we do not take up the NHS beds.  I shall continue to have Dean, my designated taxi driver to take me to these trial sessions so we shall see what happens on this drug.  All in all we came away feeling satisfied that we had covered all the options available to me and that we all felt the new trial was the way forward.  I can't think first hand of how many trials I have taken part in but it is a few now and the care I have taken of me on these is second to none.  I also had an hello from afar from Professor Martin Wilkins from The Imperial College in London.  He did some testing on me at the Imperial and always says hello to me via any of my team when they meet up.  

I was also deemed fit to fly so hopefully  I will have my study visit, sign all the forms, go on holiday to Javea and return for the right heart cath and then begin the new trial.  Happy days. 

Idiot

This being me.  We had discussed and dismissed my halving my dose of Sildenifal. I take the maximum dosage.  Just to see if I would still get so lightheaded if I reduced the dose I halved one and took it.  Bad call.  Within minutes it took effect in a bad way.  I think that as the plastic coating around it was now only on half the tablet where I had split it the medicines worked in a different way.  I walked so strangely and my talking was rubbish,  Colin could not understand what I was saying.  I remember very little of the next few hours.  Colin put me to bed with my mobile at the side of me and the landline.  I was to remain in bed whilst he took Izzy to her swimming lesson.  On his return he told me he had rung me to check and I was still talking weird.  I can't remember this phone call at all but the strangest thing was yet to be revealed.

I don't eat chocolate as many family and friends know. I woke up when Colin returned home and saw at the side of the bed a chocolate wrapper bar and my mobile was full of chocolate finger prints and the bedding had chocolate on it.  I have absolutely no recollection of getting out of bed, going to the freezer where chocolate is kept, walking back to bed and eating it.  My mouth had no taste  of chocolate in it and when I brushed my teeth there was no chocolate remnants  so what happened, this remains a mystery.  I do not believe I ate it and my bed had loads on it but why did I get out of bed to get something I don't like. At one point we both believed I may have had a mini stroke but we have dismissed that idea and put it all down to my halving the tablet.  There is a reason our tablets are coated the way they are and my halving it and so exposing all the meds at the same time had affected me badly,  I shall never do this again, ever ever. 

Exiting Times Ahead

I have hinted a few times recently that I will shortly be telling you something and at last I can.  It may not be exciting to many of you but believe it for me this news is the best.  At last we are getting sorted with my wish to have my own garden.  We share one now and though very beautiful I really wished to be able to sit in my own in all weathers and breath in good fresh air.  This is going to be happening thanks to my daughter and her partner Chris.

Danielle and her guy are buying a house in a beautiful area with amazing views.  Now this house came with a plot of land attached that was also up for sale.  Currently being used as an add on to the house garden Danielle asked if we wanted to buy it as it has outline planning permission to build.  Wow, another opportunity to help design our own place to exactly how we want it to be.  I did this before I had children as we did a build a house in the allotments attached to the old village school.  My children grew up happily in this house until I married again and moved.  We then had the villa  built in Javea in Spain so this is certainly not new to us.  We now have the opportunity again to build exactly what we want.  We have both said we want a build with a bit of a twist to it, a house with oooomph!  I am so excited.  It won't be big, the plot is only small and neither of us want a big house now, just three bedrooms and of course bathrooms and a study is all we need. I want a kitchen diner and a lounge.  Ideally I would wish for an overhang to the roof with decking underneath so I can sit under it in all weathers.  This may not all be possible we shall talk to the architect.

The house Danielle and Chris are buying has a bedroom on the ground floor with an en suite. If for any reason I am on my own for a few days I can stay in this part of their house as no steps are involved,  Another great thing about it is that there is only a gate seperating both plots so Izzy and Harrison can just run backwards and forwards between us.

This makes me even more determined to live, to push back the darned pressure levels in my lungs.  I believe firmly that the hope we were given about a real cure from Papworth will be with us to trial at the end of 2018 so another goal to reach.  We all need goals in our lives and this is mine.

Our builder said he will be available to build this house in spring, perfect as we need time to take down two trees, one diseased and one the planning office has agreed can come down if we replace it with another one, no problems with that.  Then to talk  to the architect and tell him what we want, plenty of design and planning will be going in here before that as we need to put our own stamp on this house.

So all in all it has been an interesting week for us here and about to get even more interesting.  I will let you know how I get on with both items.

Thank you again for reading this blog, you know I have said before it means so much and thank you too for the likes.

Have a great day, I am going to my ph exercise class!

Warm love to you all

Carole xx

CURED of ph? Sadly I think not

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

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

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

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

Ph exercise classes

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

Whitby

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

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

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

Safari Park

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

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

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

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

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

Javea/Xabia

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

Life is pretty rubbish right now

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

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

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

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

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

Warm love to you all 

Carole xxxx