Thursday, 24 November 2016

Denervation and PH

Two nights in a row I have slept for over six hours straight!  While it doesn't  sound such a big deal for somebody with ph who does not get much sleep it is HUGE.  The benefits of sleep are a hundred fold and I certainly feel like I can achieve something again today.  Colin is away in the motor home walking, biking and taking photographs so there is only me to deal with things so I am really pleased and looking forward to how it unfolds. 

It is a good job I am feeling good as just another thing has happened to stress me.  The loo in the en suite has decided to play up by not always wanting to flush.  I have had to resort to filling a milk carton with water and pouring that down.  Definitely a job for Colin on his return.  It certainly won't be on his wish list of things to do but a very necessary repair job definitely needed.  

Izzy has been poorly, she had a tummy bug on Friday and now her glands are up and throat is sore.  As her mommy needs to work and Chris is very busy decorating the lounge with his mom Joy  I am having Izzy here.  The carpets are due to arrive at the new house so it has been a busy time for the family, they can well do without a poorly child.  I am looking forward to having her here with me, poorly or not.  I have some lovely friends  who live two floors down  one of them was a matron when she was younger and is always  on hand if needed. It is very reassuring to know that she is so close. 

PHA UK Association

Wendy Hasnip shared this link from the above association and I am posting it on here as I think it is very concise and tells everyone clearly that because we look well it does not mean we are not seriously ill.  I always say the only good thing about ph is if it takes me at least I will look good dead!  

Denervation and ph

I have been researching and talking to somebody who had this done, and another ph friend who is having it done shortly .  Whilst at first I thought this was too scary a procedure, seeing Barbara, the first in the UK to have this procedure feeling so much better has made me look at this in another light.  As more people are having it done I believe it will become more popular IF we see people improving with their ph.  It must be said though that the criteria needed to have this treatment certainly  will not include many.  It is hoped to become a treatment for people who have tried the oral meds and the i.v. treatments and they are beginning to have no effect.  Transplant is not for them so they are hoping this is another option. 

This procedure works by deactivating some of the nerves around the pulmonary artery.   The hope is it MAY then reduce the pressures in the lungs.  It has been used to block the nerves in the kidneys of 43 patients so just maybe it will work for us. This is a roll in phase so the first three patients, our very own Barbara who was the first to have this here had two ultrasound treatments but they are hoping to go up to maybe eight as they see success with the treatment.  Some people show concern in that our body heals, will this heal and then go back to the normality for a ph patient.  We can't know yet, the procedure is so new but thanks to such as Barbara who was brave enough to go ahead with the first one time will tell.  She will be closely monitored to see and I for one look forward with bated breath to hear about her progress.  Go well Barbara C and thank you for going ahead with this.  Trying to find new ph treatments is always on our agenda so we are fortunate that we can learn so much more with this treatment. 

Black Friday

As this day looms I truly hope I can keep on sleeping well as I am hoping for a good day on Friday.  I know many now shop online when this day arrives but I like to go around the shops in the morning with my son.  He lives in Leeds so he can help me and also he gets a new outfit, jeans tops etc.  The shops are so quiet on this day , brilliant for mobility scooters.  It is so strange to see the usually bustling city of Leeds almost sleeping as people want to stay away from the shops for fear of it being so crowded, perfect for me as I can go "off" when trying to shop so the fewer people around to stress me the better.  

House design

We have not heard anything yet from the architects planning our new house.  I do hope they are getting on with it as we are hoping to begin the build in spring,  I am longing to wake each day knowing my daughter and granddaughter and family are just metres away, looking forward to when the children can just run backwards and forwards between the two gardens, so much to look forward to.  The fact that we will have a garden gives me so much pleasure too.  Our garden here is lovely many people stop and admire it but as it is shared it is not the same.  I read a blog by Kath Graham entitled All things garden and it makes me long more and more for our own.  We have been spoilt in all our houses with having lots of garden just for us.  Can't wait to be in that position.   again.  I just hope the stress of getting our house just right does not swamp the enjoyment of the whole project. 

I am watching the wonderful gardening programme by Carol Klein, she is an amazing gardener and her knowledge of plants is just phenomenal.  I wish she was a friend of mine,  She would create just the  perfect garden for us.


I have a few friends who are just going  through reassessment for this benefit.  I can see first hand the stress this creates leading up to the day of this.  I find this such a cruel assessment as we know we are not getting better.  Why do they insist on torturing people like this and thereby making the condition even worse.  I know Ian Armstrong who heads the PHA UK  association gets so angry at this and the damage done to patients needing to keep going through this.  I just thought I would tell you of one thing he told us at our PH awareness day.  He said you must NOT put down on your form the result of the 6 minute  walk done in the hospital.  This walk is done in a safe environment and we are being pushed and our hearts deliberately worked much harder than is the norm for us.  It is certainly not how we could perform on a day to day basis without the medical equipment and the people who do these assessments have no idea of the strain on our hearts and lungs as we are such a rare breed.  Before you fill in this form think carefully, maybe talk to your ph nurses to make sure you get across to the assessor just how difficult doing anything is with this illness.  It is not right  that they can judge us  as they do not understand our condition many are treated unfairly when going through these forms and are deemed to be fitter than they are.  I hope something can be done to raise the awareness with the people who make the decisions that effect the lives of our ph family. 


I have never understood why people bully online or troll people.  I don't have the mentality that they obviously have,  The fact that they do not show their profile shows to all that they are just liars, needing to get attention from people  they have never met and are unlikely to ever meet in their lives.  They are incredibly sad people who really need help physiologically BUT not everyone is strong like me and we see more and more young people actually committing suicide because of these terribly sick people.  I wonder if anyone has set up a society for the young being trolled so that they can get support and come to understand that these are sick people and that they are not worth the time spent thinking about the nasty things said to them.  Trolls are insecure people who can't stand to see others happy and try to ruin their lives.  Personally they make me laugh when I am trolled as it means I am getting to them in some way, the more they write the more I know it niggles them to see my blogs.  If I was well enough I would love to set up a society to help the young who are so hurt by being trolled.  Does anyone know if their is such a society and if so please post on your Facebook pages to give the young ones the help needed,  

To any young vulnerable people reading this just always remember that if the people saying bad things about you can't show their faces and cannot show where they are from, who their friends are etc then just ignore them, they are just sick, sad individuals who do not deserve a second of you time.   


Izzy came for the day feeling unwell as I said above.  We had a lovely time together cuddling up on the bed and watching planet earth, we both love this,  When she began to feel a little better she helped me to frost a cake, she loved it!  Later on through the day we went to her house where Chris had made a lovely dinner for us all and we could all admire the lounge, now all lined for the final decorating, Izzy did tell me she wished she lived at her old house though!  I think that as all is still not completed and her bedroom is not yet finished she doesn't feel the sense of belonging she had at her old home.  It won't take long as things are moving at a fast rate to get the house as they want it.  


What would we do without good friends. I have been surrounded by my lovely ones whilst Colin has been away, always lovely to know they care about me.  We have two of our friends arriving from Scotland for dinner tomorrow night, Jamie Oliver has an amazing fish tray recipe when you want to enjoy your friends company and not spend all night cooking. We serve this often and the recipe  has gone to America and also our friend in Canada when served this enjoyed it so much he asked for the recipe to take home with him. . We were rewarded a couple of weeks later when his wife rang to say they just loved this dish and it would be a dinner party favourite.  

All for now.  I am waiting the arrival of our computer being returned from the Apple repair shop today. When it arrives then this blog can go out. 

Thank you so much for reading,  My likes are getting more and more and that pleases me.  I had a lot of shares on my That's the way the cookie crumbles so I hope it helps to show how we feel differently from hour to hour, for people to explain it easily to their friends, Izzy had a hand in helping with this particular topic.     

Warm love to you all

Carole xxx

Wednesday, 9 November 2016

PH awareness month.

That's the way the cookie crumbles

I make no apologies for the posts I have put on Facebook this month.  It is ph awareness month so I feel it is my prerogative to post about life with ph, after all that is initially why this blog came to be in the first place, to get across to my friends and family worldwide that I am living, even whilst my body is steadily deteriorating with this invisible disease.  I have had a few up and down days as we do with this disease and as each day, hour, minute changes I liken it to a cookie, or as we say here in the UK a biscuit.

Do you dunk biscuits in your tea?  If you do here is a picture for you about my day with ph.  Imagine a biscuit, well not just one but three different ones.  Now the first one is the incredibly thin wafer used to put on the top of your ice cream sundae dessert or used to make an ice cream sandwich.  Now on a really bad day I am this wafer.  I look OK but try and dunk me, or in my case try to do anything and you would find that like the wafer being dunked in your tea that I very quickly fold,  there is just no substance, nothing solid to hold on to, nothing to work with.  For me that is a ph day, my wafer day.  It is called a duvet day where I literally do nothing, even the effort of going to the loo is incredibly hard.  I am not ashamed to say that on these days I sometimes do not even wash, let alone brush my teeth, the effort it would take to lift my arms to carry out these tasks, so easy for most of you is beyond me.  Like the wafer you put in your tea, before you dunked it then it looked just fine, the slightest dunk and it folds. It is useless.    

Now try a rich tea biscuit, a more robust biscuit and can be dunked in your tea or coffee quite easily and still for the first time come out looking whole, like the biscuit you first dunked.  Dunk it again and it will not be quite so stable but still you will be able to lift it out of your tea without it crumbling into a soggy heap into the bottom of your tea cup.  Now this day for me is a day I can actually manage a shower AND to wash my hair and get dressed.  I can amble quite nicely around the house. Try to overdo it though and like the biscuit dunk it for the third time and it is gone.  You overdid the dunking and now you pay the price as you watch your biscuit disappearing into the depths of your cup, urgh, not nice.  At least though you got two good dunks out of it before it was rendered a useless mess, some kind of a result I think. 

Well what about the ginger biscuit, a hard robust biscuit just crying out to be dunked!  Now this is a biscuit that loves the action of dunking and  then you enjoy eating a little before dunking again.  This can go on for quite a while as the biscuit becomes only slightly softer each time you dunk.  At the end you will be left with a small piece of very hard biscuit you hold between your finger and thumb and this piece you pop into your mouth and enjoy the crisp crunch of what is left of your biscuit treat.  Now for a ph patient, well for me anyway ginger biscuit day is a really good day.  Though my breathing is still not the best my legs do not wobble.  I manage quite easily a shower and hair wash.  After resting a while I can then manage to dress myself and after another rest I can style my hair.  Like the ginger biscuit though my day has not yet done.  I can manage to do a little shopping, walk a little on the flat and maybe even meet up with friends for a lunch out.  'This ginger biscuit day is a day to be cherished. Sadly though like the ginger biscuit cannot keep on being dunked, getting less stable each time so my day goes.  Slowly I begin to crumble until at last I have to concede, my day is done by early afternoon.  Like the ginger biscuit though and that tiny morsel of deliciousness left at the end what I have left is a delightful head full memories.  The taste of the day, of feeling able to do things stays with me when I take to my early bed and I smile at what I have accomplished.  

Everyday living taken for granted before the world of idiopathic pulmonary hypertension came my way talked about in just three simple paragraphs and referring myself to a biscuit!!!!!  Well so be it and maybe the next time you dunk one of your biscuits you can have a thought for my ph family living with this and hoping each and every minute that a cure is found.  This is what November is all about, binging awareness about each and every one of us living with this disease so please just bear with me this month when you see my posts about ph.  

Moving day

Saturday was the day my daughter and her partner moved two houses into one.  Everyone involved with the move worked incredibly hard to make this as easy as possible,  Whilst there was absolutely no way I could carry boxes or move furniture I did help a little where I could.  Though this only involved being at the house to let the guys delivering new electrical appliance in and going shopping to get more cleaning tackle I did feel a sense of achievement that I had played my part, albeit just a tiny part in the move.  I also saved some time for them collecting Izzy from school, a role normally left to her beloved grandad.  He was unavailable to collect her as he was on plumbing duty and had gone to collect a vital piece of equipment needed for the washing machine. 

This was the day that I met for the first time the mother of Chris, Danielle's partner and we instantly felt at ease with each other.  It is lovely to feel such a rapport with Joy  as obviously  in the future we will meet often and I am sure will have plenty to talk about.  She liked the house too, as indeed I did and will be very interested to see the work evolve as they change things about to put their own stamp on it. Thankfully it was a ginger biscuit day!

PH awareness day at Sheffield

Well there will be merry time going on at the Hilton this coming Friday as the above day is to be held on the following day at this hotel.  A few of us attending, aware that we get extremely tired travelling etc. have decided to book a hotel room so we are refreshed when we attend the above event.  We are so looking forward to meeting each other again and I am sure we will have a lovely time playing catch up.

At the event talks will be held on the future of ph, new research and other things that involve us all.  I know there is to be a section about the importance of trailing but as you must know by now I trial often as and when I can.  There is a trial I am keen to talk about with them but will not put it on here just yet, I want to get my head around this particular trial.  I shall definitely be going into the room marked trial after the talks to discuss this particular one in some depth.  

Tooth fairy

I did a post about Izzy losing her tooth.  Well there were suggestions as to how much the tooth fairy would leave her.  Izzy wrote a letter to the tooth fairy and I believe she was rewarded with a £1 coin, that is plenty I believe, after all there are lots more teeth to come out yet!  

House plans

The architect now has his contract signed, sealed and delivered by us so he is going to go up to the plot to take measurements.  I cant say I am excited yet as of course there are no plans drawn up at this stage.  My excitement will be when we get the preliminary plans and then have to jiggle things around to make them to our liking.  In the meantime all we can do is sit tight and hope he takes into account all of our wish list for this build.

Finishing on a post from Chris LaRose Mev

As this is ph awareness month I want to start and finish on ph related matters.  Please open the link to read this as it gives an insight into ph, I pray you are never in a position when posts such as this become part of your daily reading as you try to get your head around this terrible affliction.  

Another PH Message

Sending warm love to you all, I hope that if you have snow as we do here in Yorkshire you keep warm and well.   

I make no apologies for asking you all once more to click like if you have read and approved of this blog, it means so much, it truly does.  

Carole xxxx  

Tuesday, 1 November 2016

After a fraught start....... great holiday

Stress levels HIGH. 

I have to say my stress levels reached a peak when Colin rang the taxi company we had hired to take us to the airport at 3.30 in the morning.  He began ringing around seven hours before just to make sure all was in place, no response to his messages.  After trying a few times he received a curt message from the owner of the said company saying that "he was on holiday but his wife would ring us in the morning". WHAT, we were leaving at 3.30 a.m. and supposedly in their taxi! Colin rang again and left a message telling him this and the guy in question got back with the reply, "oh yes I remember now, don't worry you will be picked up by another driver, he has a pick up first but it should be ok!   Revisions and contingency plans were made so that if needed we would go in our car to the airport and leave it in the long stay car park. This would not be our preferred choice due to the walk, my oxygen, all bags etc. so we hoped all would still be well and our taxi, booked weeks in advance would turn up and away we would go.   We left our place and went down into the lobby at around 3.20 and waited, and waited and waited.  At 3.50 a taxi driver pulled up and said he had a problem, there was an elderly gent in the back that needed running home, a round trip of around eight or nine miles.  Smoke was pouring from Colin's ears by this time so ready was he to blow! 

Once we dropped the gentleman off we then had to negotiate not one but three diversions on the motorway to the airport.  On arrival it was tough getting through customs on time etc and we made  it to the aircraft just as they were boarding.  We showed the air hostess our permission form sent from the airline to carry my oxygen.  Apparently it turned out that the airline had not notified the staff on this particular flight of it but after speaking with the captain they allowed me to use it.  The rest of the journey went well and collecting our car and heading towards Javea went fine.

For the rest of the holiday it was just great.  We met with many of our friends either for coffee on the Arenal or for long leisurely lunches in some gorgeous restaurants.  Colin went biking and walking the mountains with his friends whilst I spent time doing nothing whilst he was doing these activities but just resting under the naya  and one day talking to Rhonda who used to live close by us when we had our place.  She took the time out to come and visit and get me up to date with all the local news.  It was such a lovely time.  Here  is a picture of the villa where we lived for the time we were away. 

The mountain behind this villa is called the Montgo though locally we all called it the elephant mountain as seen from a distance it resembles the head and trunk on an elephant with a cave just where the elephants eye would be.  In the past Colin walked this mountain many times and once, but only once explored the cave which he said was terrible.  It was thick with the droppings of hundreds of years of bat poo etc.  Many years previously some very old jewellery had been found hidden in this cave.  

We took a morning to go and look at the villa we had and is still so close to us in our heart and memories, and to take a walk in the woods opposite,  I wanted to go to the abandoned house where we always used to walk and take friends to see it and to wonder quite how they managed with an outside kitchen, no drains and a well for water. This old derelict property always intrigued me as inside there were rooms housing a great deal of rusty old beds, and I mean a lot all set up in one of the abandoned rooms. It looked as I would imagine  the dormitory of a garrison housing many people.  I would always in season take and eat a pomegranate from the tree outside this house in the woods too.  Sadly I just could not make it to see the old dilapidated villa which shocked me.  We reached the bee hives which were not far from the house but I just felt I had to turn back.  I was gutted as it brought it home to me just how badly my lungs were now affected by this ph.  A walk so easy, so beautiful among the pine trees with the scent of these so heavy in the air was now beyond my capabilities. 
I will return, hopefully with lower levels of pressure in my lungs and go on this walk again and complete it, I am so determined to do this.  I know the time is not right now for me but one day it will come and I will once again be walking this route easily.  I have a plan about this but I can't speak of it yet but if it happens and all is well I shall tell you all.  

All too soon the holiday came to an end and once again we were on our way to the airport and our journey back to the UK, sporting rather a lot of mosquito bites I must say, still a small price to pay for the lovely memories made.  

House news

Well at last all is in place and my daughter and her guy sign for the house and the completion date is the 4th November.  We had already signed ours so at last we can really get on with the plans for our new build,  It is going to be  a very busy year ahead of us so I can only pray that I get some treatment that pushes back my levels. Colin has so far refused to look at any house designs as he never wants to look too far ahead in case something happens to scupper our plans.  Now it is all hands on deck as we deal with the various departments to get us exactly the build we want.  

Friday is moving day for the kids so we will help all we can.  Izzy will sleep here on Thursday night so that her bedroom can be packed up ready for the move.  Removal men in place for first thing Friday morning so we shall take Izzy to school and then help out wherever we can.  We will then collect Izzy from school and take a very excited girl to her new home.  It will be a mess for a few months as they intend to do so much to the house so boxes will be piled high I fear in the garage whilst they are waiting for changes to be made but I know it will all turn out well in the end.  They know exactly what they want and I know my daughter has a great sense of style so between them they will end up with a stunning home.  

Awaiting calls as to where I go next re PH 

 I am waiting for a call from Hallamshire to tell me where we are up to with regard to where I go next.  I am ever hopeful that in the time I have been away something new has come along!  I am still so gutted that we cannot be allowed selexipag, so fed up about this but there is nothing our specialists can do, they fought hard for it but to no avail. Still I have November 12th to look forward to as Hallamshire is having a ph day to keep us up to speed with anything on the horizon and a get together so that  will be very nice. 


How quickly does this come around, is it really a year since I saw Izzy dressed to go out trick or treating.  I have no idea of how  it went as not seen them yet but I love the outfit.  She makes one lovely witch does Izzy and I love the  broomstick.......  

As it is a teachers catch up day or whatever Izzy is coming here and should arrive any minute,  She will be very excited as she tells us of the holiday she has just had in Crete.  I know my daughter said she was so proud as Izzy showed off her underwater skills, I am sure she will tell us all about it when she arrives today.
We are having a family dinner  tonight so we will be able to find out all that is happening or is due to be happening re the move and where we fit in with regards to how we can help them with this.  I have a cake made and in the freezer to help to stave off hunger pangs on the day of removal so I am already up on that one.
Baby news

I am so pleased to be a  great aunt as my nephew and his lovely wife Sue are now the proud parents of this beautiful baby girl they have named Anaisha Jade.  I just love the picture of her, she is so cute. Not sure when I will get my cuddle though as they live in London.  I feel sure I will  at some stage.  With her fabulous colouring she looks so lovely and her hair is gorgeous. She gets her colour from her mommy who is from Mauritius and I so envy her this, she need never think of trying to get a tan or using all the fake tans we now have.  I well remember my nephew when he was tiny, I used to love taking care of him and now he is a daddy himself, where does the time go. 

Izzy has arrived

She arrived whilst I was at the hospital having my bloods done. This is really good because if I am with grandad when we first see her then she ignores me and runs straight to him.  Now because I was not home when she arrived  she was so pleased to see me, running over and giving me big hugs. She was so excited to show me her loose tooth.  I am not so pleased myself as that is another  stage of her development moving forward, which is of course good but it does mean I am losing my baby. 

We left to go to  Leeds to meet up with my son  and to see the new shopping centre just opened in the city.  Reputed to have the largest John Lewis store in the UK I must say we were very impressed with the appearance of the mall.  The shops inside were the ones with the high end items for sale and the cafes were really lovely.  One of the small stalls inside were selling all hand made chocolate that was a little different to the norm, being chocolate bottle tops for £2.50 and £6.50 for a chocolate nut and bolt! I reckon some people have more money than sense!  On the down side the mall was on a slope, not so good for people with breathing problems,

Izzy and I went into the House of Fraser to look at some bits and pieces.  I had been looking at some tiny outfits by Ted Baker and Izzy was around six feet away from me looking at something that took her interest,  Well I could not settle as even with there being such a short space between us I was  concerned that somebody may snatch her!  I left the baby outfits and held her hand as we left the store via the escalators.  On the ground floor just before leaving  I said we should put our coats on.  With horror then I saw that I had the hanger of a baby outfit I had been looking at over my finger with the said baby outfit attached!  Another few feet and I would have been through the door and could have been accused of shoplifting,  How easy it would have been as my mind was not in gear.  Fortunately I realised in time and left the outfit behind.  

It is an education shopping with Izzy. She would always ask whenever I stopped to look at something "do you really want that grandma?  When I said. O she told me to leave it then and move on!  X

The day ended with a lovely family dinner and excited talks of all plans going ahead for all of us.

Ph. Ask trial 

This was the trial that I abandoned earlier in the year after only about three months into it, so unlike me as I like to finish what I start but as I wrote in my earlier blogs I felt so very very poorly on this trial. My breathing became very laboured and the headaches were so incredibly bad plus other debilitating things.  I was pleased then to read in the pulmonary updates this month that this trial had been abandoned as it was not showing any good effects at helping our condition, read the link to this here: -

This is unlike the other trial medicine I was on and completed that I mentioned a blog or two ago when that particular med showed it worked well for patients with ph.  I loved being part of that particular one, feeling almost normal again whilst on this drug.   The one in the above link was such a hard trial to be on so it showed I was justified in coming off it after just a few months.   

There you have it, I have had good trials and bad trials.  All these are necessary to move us forward.  I do not know if I am headed towards oxygen all night as I struggle so much with my breathing but we shall see, what will be will be but oh how I long for a cure, it is such a struggle for us with ph, an invisible disease that is so hard to live with.

When we were on holiday everyone remarked on how well I looked and apart from bags under my eyes due to lack of sleep I do not show any sign of being so very poorly.  Our MRI's show a totally different picture though so only we suffering ph knows what a struggle it is to do even the most mundane tasks.  Our day will come though, just wish it would hurry and come sooner rather than later.  

I am leaving you now as I need to catch up with a few requests to join our support group,  Thank you so much for taking time out to read my ramblings.  I hope you are all in a good place right now 
but if you are not then for those of you with ph all your ph family is here for you.  Strength in numbers.  For my family and  friends that read this I am so grateful for the support you all continue to show me, particularly when this journey seems too tough a road to be on.  It means so much knowing you are there for me.

Warm love to each and every one of you, take care and once again your clicking the like or adding a comment means more to me than you will ever know, it shows me we are connected.  It matters.  

Carole xxxx