Friday, 30 December 2016

Disgusting, terrible, terrible man

I read in the news today about a homeless man seeking some shelter from the cold was so badly abused when he lay on his bedding in the doorway of Debenhams in Portsmouth.  It seems that one of the security guards felt it was funny to throw water on this man, ruining his clothes and the food he had donated to him by kind generous people.  The security guard then went on to tell him to enjoy his water bed, that he deserved it.  My heart bleeds for a society that even has homeless people. let alone that they should be treated in such a dreadful manner.  For the security guard to laugh while this abuse was taking place is just too much.  I see many are saying that they will boycott Debenhams.  This is not what is needed.  This man so badly abused needs to have all his belongings replaced and the man responsible be made to pay for it, he may well think twice in future and then be sacked for such a callous act towards another human being.

I fear for a world where we have no compassion for other peoples suffering, where our thoughts are on ourselves and our lives that we cannot step out of it for a moment and see the reality of people around us who do not walk in our shoes.  Quite where this story will end I do not know but what I DO know is that this is not a one off incident.  Cruel acts are being carried out on a daily basis.  I hope, though doubt, that we can take a step back to when we did care about the person next to us, when it was the "norm" to care about our fellow human beings.  We can only pray that the man who was so badly abused has his life turned around now by the compassion of strangers this story touched.  We shall see.

The day before Christmas

We were out enjoying our annual meal with friends, we always meet on Christmas Eve and enjoy this time together.  Half way through the meal we received a message from a family member to say their boiler had broken and they had no hot water.  With family and friends staying over of the festive period this was a nightmare.  A call to the gas board and a man was sent around who sadly could do nothing, he needed spare parts.  Boxing day and still no hot water and no heating.  Fortunately we had a very capable man in the family, my hubby, who was able to wire up the emersion heater, this had NEVER been wired up in this house before strangely enough, and so hot water was to be had in abundance but still no heating until the following day.  How typical at this time of the year and this happens!  All is well now fortunately.

Family get together

Christmas day was so lovely as we had all the family around.  There was laughter and catch up talks and a drawing lesson given to Izzy from Anna.  We cooked way too much food and have been cooking the left overs ever since.  Fortunately I have plenty of recipes for this so we have eaten very well.  These times are so special when we are all together and I went to bed feeling at peace and warm with the thoughts of my family.

The following day we went down to my daughter and her partners house and we had a lovely time.  It was so nice to be taken care of by the younger generation, we just sat and had our every needs catered to.  As I looked out of their lounge window I could see the fence that is separating our two properties.   I cant wait to see the landscape change as our house takes shape.


For those that have noticed how this treat has now got gaps in the triangles so large that two slices of toast can be pushed in...... Iceland have still got the ones with all the chocolate, the ones where you struggle to break off a piece of this delicious treat as the chocolate is so thick, so if you want to buy the one very generous with the chocolate get yourself down to Iceland but be quick, stocks will be running low and when the new stock arrives it will be the ones with the huge gaps.  We had one of the ones from Iceland given and opened that and one of the new ones to show my son, he was not impressed with the new ones at all!!!!

House design

The plans have gone off to the planning department so we are now playing the waiting game.  One thing for sure is that the next door neighbours will not put in an objection as they are family.  We just LOVE the design and when we saw it in 3D we were blown away. I kept on saying stunning, just stunning".  Our architect has a good eye and has added many features within the bungalow that in my mind has the wow factor.   Hoping all goes well with it and that we can get the build underway as soon as possible.

Love Heart Building Team

 The bird table bought for Izzy was a huge success.  Yesterday was the day to assemble it and so of course Izzy needed to be involved.  As she saw her grandad with his case containing his electric drill she decided she wanted her own box, minus the drill of course.   Out came a carry case used for some tiny dollies and the case began to take shape.  The end result was a lovely case with the name "Love heart builders" on the front of her box and she then went on to fill it with the screws needed to do the job.  Out came grandads drill and Izzy helped with the job by putting the screws in the places needed and then whilst grandad held the drill she pressed down on the power switch.  Result one very proud little girl and a lovely table just waiting to be put in their garden.  This cannot happen yet though as there are two rabbits due to be placed in their "hidden" at this time,  cage in the garden so we need to stay away from there until they are ensconced in their new home.


We have some friends who live in Spain and they are over visiting the English side of their family.  They had hoped to surprise us with a visit but wisely, realising that my denervation was coming up shortly rang us instead.  Why....  well they are staying with family that are full of colds and they know how colds impacts on my breathing and knew that if I was full of cold this denervation would be unlikely to go ahead.  We caught up instead on FaceTime.  Thank you for being so considerate and lovely to hear family news. If this treatment works I may well be joining them next year for a holiday, roll on.

You will all be busy at this time so I wont go on and on with this blog.  Have a great new year and keep safe and well.

Will write in the new year, 2017, it is almost upon us!  Thank you so much again for the likes, the shares and the comments.  I send you all warm love and hope for a cure in the coming year.

Carole xxx

Thursday, 22 December 2016

.This poor overworked heart.


Thursday began with a pretty bad event when I woke in the early hours of the morning feeling like I had a ton weight on my chest.  I also did not feel well and I felt sick.  There was nothing too specific other than that I could put my finger on but I felt I needed to see a doctor rather than let something brewing spiral out of control.  For sure I did not want to reach for the antibiotics as I try to take them just when absolutely necessary.  A phone call to the doctor and an appointment was made for later in the morning.

I decided that I would attempt to get a few bits and pieces we needed from our supermarket so off we went.  Big mistake as  each step I made I began to feel worse and worse until when we reached the till even the girl putting our purchases through noticed it.  With a great deal of concern she asked if I was ok.   I told her I would be but was going to sit down.  Before I knew it she had somebody else on the till whilst Colin bagged our things and came over to see me, she asked if I would like a drink of water which I gratefully accepted.  A slow and steady walk to the car hugging the handle of the trolley and then I was taken to the doctors whilst Colin went to unpack our goods as there were frozen items. amongst them.  I was too early for my appointment but we both decided it would still be best to take me, drop me off and him to return when things were all put away.

As I sat I began to feel worse and so asked for a sick bowl.  By the time Colin arrived my face was puce.    The doctor was very thorough and told me I had a sore throat and she suspected a gastric problem.  anyway away we went with meds, {not antibiotics thank goodness} but with strict instructions that if I got worse I must ring the surgery.  Get worse I did with a cough that threw up green gunk and my voice totally left me, {no bad thing the latter for Colin} but I decided to see how I went as I was sure I did not want the antibiotics.  My body is doing well fighting it and my chest no longer feels tight, though still a little green gunk but not so much as before.  The last thing I want/need right now is an illness that may impact on my denervation, though of course if I felt the need I would definitely ring my doctor before things worsened too much.   I do feel though that I am on the mend thank goodness. I hope my voice gets better before Saturday as our annual get together with friends is always lively with discussions.  

PAH association

May I just remind all my ph friends that this group is for people with ph and their carers as it clearly states in the paragraph on the website.  I mention this because of late I have had quite a few instances of people adding, or trying to add all their family and friends.  Now when you try to add it has to come via an admin site and then we need to send them messages, sometimes even four as they often go unanswered,  to ask of their condition. As these messages are rarely answered it then leaves us  with the task of writing yet another message to say that as we have had no response to all our messages we can only believe that this is not the group they perceived it to be so we are therefore deleting their request.   HOWEVER if indeed they do have ph and wish to join us then please feel free to request to join again. I even had a message back from one girl from a group with the same surname saying that she did not wish to join the group, she had been added by a family member who she does not even speak to.  Now I am saying this because if we add anyone connected to you all this group would be totally unmanageable and leave behind the very essence of the group.  Whilst all the messages are being sent out time and again the very ones who need our help can be pushed back when they needed our support NOW!

It may sound petty but that is the way the group was set up and so we must abide by all the rules.  Please, if you wish to add somebody think hard, are they your partner/carer and the answer then to their request will be yes, if however they are not really closely connected to your care we will have to sadly refuse their request.   I am asking you not to add people who are not involved in your care directly.

I hope you understand the need for this post and take it in a good manner.  I mean no harm I just do not wish this group to be diluted by adding members who have very little/if anything to do with ph.  Thank you.


The callous action of yet again a likely extremist has once again left a country, no a world, lost in the depths of despair   The people out shopping all happy and looking forward to a festive season ahead were mown down with no thought at all for the pain this would leave behind to everyone.  The poor driver who was so brutally killed whilst they took his waggon  had only been talking to his wife minutes before they took his life.  Bodies strewn under the tyres and thrown all around, it is such an unbearable pain.  Will these acts ever stop, can we ever stop them, I fear not, I think we have gone too far in the wrong direction.  By interfering in the politics of a world that is so far behind us in culture we have brought this terrible disease upon us,  The politicians should be bowing their heads in shame.

What a mistake to make

When I am feeling well enough I make pastry, different kinds and freeze for later use.  I decided to take out some of this to make sausage rolls and mince pies.  I was very pleased when the sausage rolls came out of the oven, they looked so delicious I decided to try one.  Arghhhhhh I had used the sweet pastry I had made for the mince pies for the sausage rolls and the savoury for the mince pies.  Now it does not matter for the mince pies, they tasted just fine but the sausage rolls..................another matter entirely.  I kept them to one side and my sister called to visit me.  Seeing them she took one and popped it into her mouth.  I did not say a word and at first neither did she.  When she was leaving I asked her if she wanted to take some sausage rolls with her and she said no.  I confessed to mixing up the pastry and she said yes she could tell but did not want to offend me by telling me!  This is the first time I have done this and I hope it is my last.

3D plans

Received a phone call from our architect yesterday.  It was not an easy conversation as my voice is barely non existent so he only got one or two words I was speaking.  Colin was  up the ladder with a paint brush so he could not help.  Anyway the most important thing is that our plans have now been put into a 3d form and we can go down and look at them on Thursday.  I am so excited by this.  We have chopped and changed one or two things but I now believe we have everything the way we want it to be, busy times ahead now.


Colin has taken Izzy to Eureka today as Santa will be making a stop off to see some children, his elves will be busy in the museum too.  I was asked if I wished to join them but the thought of a pleasant day home alone appeals very much.  Izzy is here daily whilst the school holiday is on which is very lovely but a day off.............. without a doubt.

Home again after spending a very pleasant five hours in Eureka and seeing Santa.  One very happy little girl.  We are just awaiting her arrival today and will be going down to her house as her bed is being assembled today.....  oh happy days.

She has arrived here today wanting to go swimming!  Very nice but so many things to do today, we shall see.

Thank you

I would like to thank YOU, yes YOU.  If you are reading my blog you are supporting me as I can see how many people read it.  For the likes I receive thank you and for the comments a HUGE thank you too for taking the time out to do this for me.  You have been with me through 2016.  You have shared my good times, my bad times and 2017 is looming where I HOPE I get some ease to this ph after the denervation.  If this proves to be a good move for patients with pah it will eventually be offered to many people and I so hope it does.  Keep reading the blog as I will definitely take you with me on the journey through the op and also through  the tests to see if it has indeed helped to push back the pressures.  Who knows, it may be your turn next if you suffer from pah. It is so nice to see that there are so many people who are supporting me on this journey and also to the ones with ph sharing their journey too.  Lets us hope the cure comes soon.

I hope all the festivities ahead go well, no hospital stay overs for any of you.  Enjoy your family and friends, none of us know what is around the corner, hopefully wonderful things.

Tons of love to each and every one of you.

Carole xxx

Thursday, 15 December 2016

Jubilation!!!!! Yes it is on.

In all honesty I was nervous yesterday when we were on our way to Sheffield to meet up with Alex, the man who would, if I passed the rigorous criteria,  be doing the denervation.  I had already met him at a conference we had attended and was so pleased that I had.  We both felt very comfortable talking to him.  He explained that he had read my notes very thoroughly, discussed me and my deterioration with David, my specialist ph doctor and they had both agreed that if the tests carried out whilst I was there were within the markers needed for the denervation were in the boundaries then it was ON!  
Well wouldn't you know that the MRI machine was broken, I needed the MRI before the operation was carried out.  Alex though had checked back to my many many MRIs and with that he could see by the latest one done only about five weeks ago that I would fit well into the band.  That said he has agreed that he will still carry one out on the day of my op in the morning and then do the op in the afternoon.  I asked how many he would do and he said that as I was tiny!!!!!!!  he would do less than the 8 that had been done for one person on the trial.  I said I was by no means tiny, standing at 5 feet 4 and a half inches and weighing in at 9 stone 8 pounds.  He explained that he meant that our lungs obviously  vary from person to person so my lungs would not be as big as some that would have all 8 of them done.  His explanation of the op was very precise and specific and I liked that he told me why I would be having this in the Northern as they have such a great cardiac team that if needed, though he did not foresee any problems all the best specialists  would be on hand.  I would then stay the night, Alex would too in the emergency call room just in case.  All being well I will return home the following day.

I am being sent a watch, something like a fitbit that monitors all I do, all the readings that they need so they can see exactly how my levels lower from time to time in a day.  I will wear this watch for two weeks, send it back to be “processed” and then have it returned and so on and so on.  I had been so scared that I would be deemed too well for this operation so the relief when he said I was just what they needed for this op was great.  

He did explain that they do not expect our levels to drop immediately, even if at all though they are hopeful.  Rather it will take around 4 to 6 months to see a marked improvement and they HAVE seen this in others.  We agreed that I would return on the 24th January to have this done and believe me my relief is huge, I feel like I have been given an amazing gift.  I will of course keep you updated when there is anything to add on to this.

We touched on other studies and would I be excluded due to having this done and the answer was an emphatic NO i would be able to trial after 12 months.  Selexipag reared its head again and I was assured that WHEN and he did say when and not IF we get it approved here then my having this op would not put up walls to receiving this medicine so it seems a win win situation.   It will either work or it wont but we will be moving ahead with the research needed to see if his can be offered to their other PAH patients or not.  Barbara Cherry was the first to have it in the UK, there were two before her in Belgium so we are now 10 months into this op being carried out and the signs, so far, though very early days, are good.

Colin rang my daughter last night as she really did not want me to have this op done just yet.  Her relief when all was explained to her was great and she says she feels a lot easier now she had this talk with Colin.  It did worry me that she had been so concerned so it is nice to have eased this for her.  

Meeting up with friends

I always love to met with my friends when I get to Sheffield.  The nurses are almost like family as they take such good care of us and we all know them so well.  I generally get a cuddle or two from them and then on to the individual wards to see my ph friends.  Parris was looking rather glum though I did get a huge smile when I walked in.  Poor love is so fed up and just wants to be home.  I believe she will be allowed home on the 23d  I did not get much time with anyone as a taxi had been booked to bring me home.I managed to catch a few words with Christine Fowlie for the first time face to face.  This was so lovely and it changes how we feel about them on the facebook page, we now feel we know them better so this was so nice.  Patricia Nelson always seems to be in when I am so again a very swift hello, goodbye but it was lovely to see her nevertheless. I do hope we all meet up at the conference in May, always a delightful time 

What is on your child’s Christmas list to Santa?

Izzy loves Club chocolate orange wafer biscuit and when she was given one after her meal the other day she whispered to me “grandma I just LOVE these and have put them on my list to Santa.”  She also told me she had put on that she wanted a bag of mini cheddars!  Well nothing too onerous there then.  The RSPB binoculars and the bird book and seed ordered from the RSPB website where Izzy is a member has arrived.  Sadly the bird table has not yet so we do hope it arrives in time.  She will get much pleasure looking onto the garden with her own  binoculars and recognising the birds in the book she has.  We always encourage her to enjoy wildlife and she does.  She jumps for joy when we show her documentaries about whales, frogs, elephants etc.  We just know this is a wonderful gift that will bring her much joy and teach her so much.  


Just heard our fabulous cleaner talking to Colin in the kitchen and she said “do you think human skin would make good leather”!!!!!  If we ever disappear maybe you should be looking for us in the leather bound new editions.  Will really need to ask her in a while why she asked such a bizarre question.


The first person I wanted to ring when  arrived home yesterday with the news about my future op was my mom, I was so excited to tell her the news.  Sadly she is no longer with us, nor is my dad and my elder brother Antony.  Please please think about others, some we have never known who will no longer be around to share in the festivities of the season.  

I sponsor a child who lives abroad, it doesn't cost much, £15 a month and also send money to Great Ormond Street children hospital monthly too but I also try to send a little to ease the suffering of others at this time of the year, as well as filling my boxes with the much needed food or toiletries they badly need.  Please spare a thought for them whilst you are busy getting all in place for a very festive season.  A little goes a long way and if we can help in any way then how lovely it is.  It may be that you just pop a packet of biscuits in the big tubs they have after check out at the supermarket.  Just a small thing makes a huge difference.

Love this post

This so applies to most moms and dads I suspect.  It is just what we want and need to say to our children no matter how old they are.  It is a mothers prayer I believe.  I have no idea who wrote it originally, it appears to have been passed around, and rightly so.  Exactly what I need to say to my  two: -

My children each year ask me the same question. After thinking about it, I decided I'd give them my real answer:
What do I want for Christmas? I want you. I want you to keep coming around, I want you to bring your kids around, I want you to ask me questions, ask my advice, tell me your problems, ask for my opinion, ask for my help. I want you to come over and rant about your problems, rant about life, whatever. Tell me about your job, your worries, your spouse, your kids, your fur babies. I want you to continue sharing your life with me. Come over and laugh with me, or laugh at me, I don't care. Hearing you laugh is music to me.
I spent the better part of my life raising you the best way I knew how, and I'm not bragging, but I did a pretty darn good job. Now, give me time to sit back and admire my work, I'm pretty proud of it.
Raid my refrigerator, help yourself, I really don't mind. In fact, I wouldn't want it any other way.
I want you to spend your money making a better life for you and your family, I have the things I need. I want to see you happy and healthy. When you ask me what I want for Christmas, I say "nothing" because you've already been giving me my gift all year. I want you.

If you feel the same way, feel free to copy and paste... I did!

Thank you Karen Reams who found it and shared it.  


They certainly are nothing like the ones we used to have when my children were small.  Izzy just had hers and was a cowgirl!!!!!  Se did make a very pretty one though and her singing and her actions were very good, very well rehearsed. I was just in her eye view so she sang to me the whole time, she makes me very proud. 

Her carpet is being laid on Tuesday which means her bed can then go up.  Her mommy has bought her a desk to do her homework on and this room will be really pretty, girly and so very lovely when finished,  I am so excited for her. 

Well it is a busy time of the year so I wont hold you up any longer.  I hope you manage to stay stable those of you with ph and for the ones that do not have ph then I hope that all goes well for you in the next few days as everyone seems to go into overdrive to get things done ready for the festivities ahead.

Warm love to you all, again thank you for the likes, the shares and the comments.  It means so much to me honestly.  

Carole xxx

Thursday, 8 December 2016

THE phone call

THE phone call

Well today I knew as soon as my phone rang and it was an unknown number that it would be my trial co-ordinator Katy.  She asked if I could attend next Wednesday at 9.00 for a very full screening appointment, MRI included and then a talk with Alex, the guy who carries out the denervation.  Of course I agreed and the day was free except for an eye appointment to change and ask Danielle to collect Izzy from school, (generally our pleasure on Tuesdays and Wednesdays) I keep thinking well I WILL if I pass screening agree to this procedure, then I hear something about it and think well no I won't, I will have the line.  The truth is I will probably change my mind time and  time again until the final say.  Anyway the talk with him should be interesting and I will have many questions to ask.  

December 4th was our wedding anniversary. We have made it to 18 years.  When we married after just four months, we were also engaged after thee weeks, people thought it could never last.  How wrong were they,  We have had our ups and downs but we are still strong together.  My hubby is my rock and an amazing stepdad to Haydn and Danielle and the best grandad ever.  

Both our lives changed dramatically after being diagnosed with ph and it is such a scary time on all fronts.  We had to make a change in where we lived, our lifestyle due  to my limitations and leave friends behind, though of course we are all still in touch.  The fears with my health were huge, such a shock and could we ride this roller coaster and stay firm together.  Six years on from diagnosis we are here, still happy and still "getting on" with this darned pulmonary hypertension. 

We decided to go out for lunch to celebrate at a very nice restaurant we frequent and we were fortunate to get a table.  We rarely book much in advance as we never know if we will be able to make it due to "off" days but make it we  did. Not a drinker in the alcoholic sense I did succumb to a lovely glass of mulled cider, it was absolutely delicious.  I love that it is often available at this time of the year.  I always have this treat if we are in Howarth at Christmas time as it is served in the local pub and as I drink it I always try to go back in time in my head  to when Branwell, the only boy in the Bronte family would frequent this very pub and drink too much and take his drugs. anyway I digress,  back to our meal.   I wasn't too impressed with the food  which is unusual for this lovely restaurant so we decided Sunday was just a "bums on seats day" for them. I only got a sniff when I pointed something out to the waitress that was not as I asked for with my meal.  We will return but never on a Sunday.  Just before we left I had the feeling that overwhelms me when I am going off.  Colin took one look at my face and could see immediately what was happening to me so we got the bill and  left,  I hate this about ph.  You can never know if you will see the whole experience through or will ph raise its very ugly head.  My legs were like jelly and I was hugging the wall on the way out.  Colin laughed, in a nice way, and said that the other diners would be convinced I was drunk and yes, he was right they would have absolutely thought that, I would too if I saw somebody walking as I do when I have gone "off" and so it was home and pyjamas and a rest.


 I went for an early doors appointment to my local warfarin clinic on what I assumed was my allotted day.  Blood taken the nurse said "you do know you have come a week early don't you?"  Fool that I am I didn't,  I suppose that as I am mostly at this clinic weekly I just never gave it a thought.  As it happens I think it will be fortuitous as my level of INR  was rising  above what they like, though only slightly but I still think they will reduce my weekend warfarin a little.  I have learnt to attend this clinic at around  8.20 as there are rarely more than a couple of people in front of me, sometimes none at all. This is great though I do miss listening in to other people's conversations as  sometimes they can be very interesting!  

On the way home I stopped to look at the old nurses accommodation they are now converting into houses.  When I pass it always brings back memories of many years ago when I nursed and lived in this home.  I can't believe it was almost fifty years ago I shared a room with three other nurses.  How time flies. I always look up and see the room I shared, strange to think somebody will be living here.  I wonder if they will ever think about the ones that lived there before them, listen for the ghosts of the past, wonder about their hopes and dreams and wondering in which direction their lives have taken them.  Gosh how time flies, I could never have known then how my life would unfold to where I am today, some good and some bad.  

Arrived home to a lovely breakfast of scrambled eggs on toast.  Colin does the best eggs, soft and lovely and just as we finished eating the phone rang,  It was my daughter to say she had taken Izzy to school and then went on to work. She then received a phone call to say the heating  had broken in all the school so could Izzy be collected. This is a bonus as it means more time together, though we will do some school work, very important when children miss a day and are well enough to be taught.  I have no day clothes for her here though so she will have two choices, remain in her uniform or put nice comfy pyjamas on, her choice.  So we will see how the day unfolds.  

8 hours later, the day went well. Two hours of teaching and then much playtime with grandad, two meals eaten and a bath...... home time!  Now we can catch up with the things we need to get on with.  Had a lovely time with her, we shall see if the heating is back on tomorrow at school.

Is it only men? 

I can't believe women do this, it surely must just  be men!  Why do they leave the last dregs in the bottom of the twiglet  bag, biscuit  tin or sweet bag!  If it were me I would leave the empty bag in sight so that the item could be put on the shopping list,  Once again I went in the cupboard for something to find a teaspoon full of crumbs at the bottom of the twiglet  bag!   It makes no sense to me at all, I wish he would stop this habit, annoying for sure.

Brain fog.

I went to a funeral  last Friday (well I went to the church) only to discover that I was a week early.  Strange that this week I was a week early for bloods. So angry with myself as I had got ready when really I was so exhausted .  Now I will do it all again as I will attend this Friday, correct day, and pay my respects to a very elderly lovely neighbour.  I know the church will be packed so I will arrive early to make sure of a seat.  I hate that my brain does not work right and yes, of course I know I should check my diary but the truth is ......... I forget to look at it!  I know my ph friends will totally get how frustrating it all is.

  I hope I remember on Thursday that the garage is taking my car over to Leeds for yet another repair on a faulty valve that speaks to the computer,  Would hate to be out when they come for it. I could do with a talking diary that tells me as soon as I wake up what is on the cards for the day without me having to remember to turn it on. 

Telling family and friends of diagnosis

I have seen a post by one of the newly diagnoses ph patients asking how to tell family and friends of their diagnosis and even if they SHOULD tell them.   

This is a tough one as ph is so difficult to describe just how bad we feel when we look so good on the outside.  For me it was important that everyone I knew or came into contact with knew just what I was dealing with,  I ran off some of the relevant details of pulmonary hypertension, the ones describing it  in more layman terms  were the best, along with my doctors letter stating the seriousness of the illness and my meds.  I would then tell my family and friends of my disease and then show them the articles I had run off that were pertinent to me.  After saying all of this it did take a year to get this far as I was way too poorly initially to do very much about it and had to leave it to Colin to explain as best as he could this truly terrible devastating illness.  I think I was helped by the fact that I also had a Hickman line,  When they saw and  they could actually hear the pump zipping out the meds every two minutes, it was easier for them to understand the seriousness of this condition, that this contraption connected to you 24/7 is your lifeline, without it you undoubtably WILL die sooner rather than later it did help the process. 

Just a pic

I read somewhere that posts with a picture on are read more than those without so I shall add this picture as I certainly like my blog being read by you all.  It is just a pic of my darling Izzy.  She is staying overnight with us on Monday, I am just pleased to have her here, to know we will be snuggled up in bed whilst I make up stories for her as I used to do with mine when they were young.  

Well time to rise and shine, a new day has dawned and things to do people to see and all of that.  Thank you all for reading, again for the likes and the shares.  I just LOVE the comments and I will write next Thursday after we have talked to the specialist about the denervation telling you where I am next headed on this ph journey, one I would never have believed I would still be in a position to be talking about over six years later.  Though life is hard with ph it is still good.  So many new discoveries in the ph world on the horizon to look forward to.

Warm love to you all and hope your day is a good one. 

Carole xxx

Friday, 2 December 2016

My ginger biscuit days just left............


Please just walk with me through the past few days.  As I have already said my daughter and her partner have just bought a new house and as parents we all want to help.  Colin along with Joy,  the mom of Chris decided to redecorate the lounge.  This is no mean feat as it is a really large space.  Stripping and relining was done by Chris and his mom, three walls were lined in readiness for painting and the front wall was to be a feature one.  I wanted to help, of course I did and so began my week of ginger biscuit days.  { read my blog That's the way the cookie crumbles}

I was the gofer, the one to collect things, pick up Izzy from school as my days were pretty good etc and I was pleased that I could help.  Even stairs, and there are many at this house I managed, albeit with sometimes a push up from behind but also by using my arms on the hand rails to give the extra surge needed to climb them all.  Adrenalin plays a big part sometimes in what I can manage to do.  I was useful, I was needed, such a joy.  I even managed to paste a few lengths of the lining paper for the front wall!!!

In-between helping I was seriously looking into the denervation that had been talked about by two of my specialist team.  I at first dismissed this as it seemed to be too new, too novel and though I have trialled drugs many times and taken part in many studies this seemed a step too far.  I never really discussed it at length with my family and friends, it was too "off the wall" to take seriously, though I knew my meds were no longer working efficiently for me.  So it was that the first time I really discussed it properly was with my good friend Rhonda whilst I was on holiday in Spain.  The day was lovely, sitting under the naya and discussing anything and everything that popped into our heads, such a lovely friend it was so easy to move onto this subject.  I told her of my fears, the research I had done, the hopeful benefits versus the negatives, it all came out in a rush.  Rhonda listened and then said "well you are strong, you can do this and if the meds are not working efficiently what do you have to lose" Of course she was right and so I returned to the UK with a resolve to take this suggestion by my doctors further but still not totally convinced.    

Barbara Cherry was really good in giving me feed back to my questions.  Being the first to have this operation she obviously is a font on knowledge on the subject and then when later I saw a Facebook message from my friend Jo Smith saying she was going ahead that was it, mind made up, well almost. After all I was doing OK, I had gone into my ginger biscuit days, the wafer ones were gone it seemed.  

Sadly the ginger biscuit days came to an end and I struggled more and more to even stay in the room with Colin as he decorated, I kept having to go and sit down.  The act of climbing the stairs became so hard, it was as if I was making my way to base camp at Everest.  Each step was incredibly difficult to climb as my oxygen starved body found it difficult to send the much needed oxygen rich blood to my legs.  They felt soooo heavy, and I actually had to help to lift each leg with my arms up each step when I decided  I needed to go home.  Still I did have that last crumb, that little bit of deliciousness left after the biscuit had been dunked and eaten too many times.  I feel I had made a difference, albeit a small one.

On returning home I decided I wanted a lovely warm bath, just to soak and relax.  Not a bad idea but in truth the effort it took was huge.  The bath water was drawn, pyjamas and dressing gown at the ready and then it hit me,  How could I get in, the bath sides looked huge and my legs were not co-operating.  After a few attempts, and making sure I had unlocked the door in case I needed to shout for help {not something I would have been happy to do though as my body is not that of a 17 year old any more) I settled down to enjoy a soak.  I relaxed and enjoyed the feeling of warmth and the lovely scent of the bath oil used, stupid me!!!!!  After giving my face and body a lovely exfoliating scrub I decided to get out. Oh no, the oil had obviously made the bath slippy and the sides that had seem huge to climb into had grown even higher I am sure.  How could my legs get over the side of Ben Nevis!!!!  I tried and tried even to stand up, draining the water "just in case".  I tried to get on my knees first, no could do, tried to stand up by pulling myself up with the handles, no joy with that one either.  Just as I thought I would be in the bath for at least an hour until Colin arrived home one last huge effort had me standing up!!!!!  Yeah, but then it hit me, I still had to climb over the bath sides.  If Ben Nevis seemed hard then Kilimanjaro was a thousand fold. I had already left the towel and dressing gown etc on the floor of the bath so decided that if I fell at least my landing would be a soft one.  It took time and effort but I managed to get out. I laid on the bed to dress myself, no energy to stand, I was done.

Colin arrived home and made our evening meal, he is getting to be pretty good at cooking and his knife skills are now amazing when chopping.  Jamie Oliver had a hand in this with his lessons!   Meal eaten and we watched a little tv and then I decided it was time for my bed.  I just could NOT get myself out of the chair.  Colin pulled me up and helped me to bed and there I lay but it was then that I decided for definite that IF my screening goes well I want to go forward with this denervation.  I need to give it a chance, I need to push back some of the pressures in my lungs, to help them to help my heart.

Then came the call from my research specialist who asked me if I had read all the paperwork I had had sent and did I want to go ahead.  Without reservation, though some trepidation my reply was a resounding YES so I have been told that in the next couple of weeks all arrangements will be made for my screening, hotel booked and she was going to talk to Alex, who will be carrying out the procedure, of his availability. My daughter is a little upset, she wants me to wait until more have been done but I feel I cant wait, this is my time.  Maybe the actual procedure will not take place until after Christmas, I really do not know but I do know it can't come soon enough for me.    

Jo Smith had the op a couple of days ago and though there were a few issues she is now home and told me it will  be fine,  Barbara is still on hand for me to ask any questions and now I just await the date. I believe I will be the 8th person worldwide to have this procedure.  Jo tells me there will be many people in the room but as I say I always did like an audience, flash back to my Thespian days.
Of course I will be nervous but there is nothing wrong with a few nerves.  When I used to parachute I was always told that if I did not have nerves before jumping I should not be doing it.  We need the nerves and the adrenalin, our bodies need it to cope wth what lies ahead.  I was always nervous before a jump wondering if I would be quick enough if my chute malfunctioned, roman candled, to cut away that chute before employing my reserve.  If I did not have the presence of mind then the two would tangle, it is right to be nervous.  right to have nerves before going on stage at a theatre, will you remember your lines, will you deliver them correctly.  right to be nervous when stage managing productions, BUT once the show begins or the  jump is under way the nerves dispel and all thoughts are on the process unfolding.  So it will be for me IF I meet all the criteria for this procedure, and there is still a chance that I will not, the criteria is very high and the screening very thorough.  We shall see.   


Christmas is coming, lots of you have children, grandchildren, brothers and sisters.  Please please read this story.  Sorry about all the rubbish posted on the right but concentrate on Elle.  Aged 10 she is dying, she needs a transplant.  She thanks her team for the care they have done for her but her time is running out. I pray NONE of you are in a position to have to sign the forms donating the organs of a loved one BUT  please, please if you have not done so then sign the register for donation on your own behalf.  She could be your child, you would be hoping that somebody would have the generosity of spirit to have signed the register and that you would get your wish, an organ that can save your child instead of it being thrown away, destroyed.  If you have not signed the way to do it is easy, go online to organ donation and there is a form, sign it and become part of the organisation that SAVES peoples lives.  A few minutes is all it will take you, please please, I am not scared of begging when it comes to such a huge thing, to save a life.    There can't be a bigger gift.

Rich tea day

A new day has begun, a rich tea day I think.  I know I am capable of getting up and dressed as that is done.  Now all I am doing is getting this blog out and attending the funeral of a friend of mine who sadly died last week.  I shall then rest and hope tomorrow is a ginger biscuit day as we are having Izzy and I would love to be able to do something with her, even in a small way as spending time with her is so precious.  

So I love you and leave you all with once again a huge thank you for reading my blog, for the likes and the shares that mean so much to me.  the comments are read and re read I can assure you too.  

Warm love

Carole xxx

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