Monday, 6 January 2020


Our family next door had friends with children staying for a few nights just after Christmas.  The kids needed to blow off steam so as we were headed to my doctor we asked who wanted to go with us and three of the kids were well up for it.  Off we set and we had not gone very far before one of the group notices a squirrel looking very frightened and appearing to be stuck between a down pipe and a wall.  All the chidden begged Colin to free the squirrel so without ado Colin set about to do just this.  He was wearing gloves so it idid not appear to be a big issue.  How wrong were we.  The ungrateful squirrel (though of course just acting out of fear) bit Colin with a ferocity we would not believe.  Not one but five bites with the bigger one extending all around his finger.  The blood poured and poured which concerned the children a great deal and I must say me.  

What were the precedents for being bitten by a squirrel?  We headed off to a pharmacy that was close by to get sterile wipes and dressings as the wounds continued to bleed, not just a little but such a lot.  The chemist took one look and told us it was an A & E job, that he would not touch it.  We were on our way to my doctor anyway so decided to ask them as who really wants to sit in a hospital waiting room for hours on end.  No joy to be had at the docs as we were informed that as it was a squirrel bite it needed a different tetanus jab than they gave.  I continued into town with the kids whilst Colin set off for the hospital.  Fortunately he was only an hour waiting and he came home with all his wounds dressed, a pack of antibiotic tablets and a sore arm from the tetanus jab.  One thing became clear is that never again would he help a squirrel in distress.  His favourite walking gloves now have holes in them too so a disaster on all fronts.  

Out and about over the festive period

Well yes I did manage to go to the Indian Restaurant on the 23rd December but did not tarry, just ate and ran, well more shuffled out when finished.  The food was excellent and well worth the effort.

I managed a couple more meet ups with friends.  We attended our once a year catch up with the troops as we are called.  We do more than once a year at different times but this one is set in stone that on the 24th December we all meet up for a meal.  This year it was at a great Italian place we know and once again we were not disappointed in the food and service.  I managed to stay the course and was astounded that I did given quite how bad I had felt only a few days up to this meeting.

We also managed to meet up at a smashing fish place with the Captains (a group of about 12) and had the most superb halibut steak I have had in years. I feel sure it would have been cooked with loads of butter but my did it taste good.  So yes I was able to meet up with friends which was very pleasing.

My back improves daily.  Though there is nothing I can do about my deteriorating heart at least I am not in as much pain as I was and can see a light at the end of the tunnel.  Never do I wish myself nor indeed anyone else to experience such pain, in particular as I could not take pain meds to help to relieve it.  


Izzy had on her Christmas list that she wanted a fringe.  I truly did not want her to have one but her mom is wise and sorted Izzy out a pamper time at my daughters hairdresser.  The hairdresser was going to go over all the pros and cons of a fringe with Izzy to make sure she made the right choice for her.
The last thing I said to Izzy when she left us was please do not have your hair cut into a fringe.  See there is so much you can do with hair all one length and my fear was that a week or two after the hair was cut she would regret it.  We waited at hone until we heard the doorbells ring.  I stayed in the dining room whilst Colin answered the door  I dreaded her coming through but in actual fact she looked amazing,  When I told her she looked relieved that I liked it and kept asking "really grandma, really you like it.? Yes I did  though I think there is one person not quite as happy for her as we all are.  That is Chris.  Chris is Danielles partner and an amazing step dad to Izzy.  He truly loves her and I think when he saw her he saw is little girl was growing up.  She does look older with a fringe and he seemed to find it more difficult to see than we all did.  I think he has come to terms with it now but it did take a while.  

What will 2020 hold for us

I am hoping there will be more break throughs in medicines, not just for us but for the other rare diseases, and the ones not so rare.  I would love a year that sees more treatments, more options for us all.  Maybe if more money is thrown into the mix we just might do it.  Who knows.

One thing I hope it does not hold for me is another letter that dropped through our door dated the 31st December from Health Care At Home.  It stated that they were about to knock me off the list for my life saving meds as despite them trying to get me on the phone on numerous occasions I had not answered any of their calls.  We were livid. - in particular as we log all calls and not one had come from them.  Not just my own phone number had not been rung but neither did the house phone nor Colin's.  So they were lying and yet they informed me they were going to talk to my hospital to inform them.  Of course we immediately rang them up to ask them what the heck they thought they were doing and that the letter was so ridiculous as we could prove to anyone who cared to see that not one person had tried to contact us at all.  The lady on the end of the line was very apologetic and said she had had quite a few phone calls to say exactly the same thing. Clearly there was a problem at their end, somebody lying to say they had rung us all up.  She was getting the people in the know to deal with it. I was informed I should throw away the letter and my meds are now on their way. So who did this, who said we could not be contacted, who had the right to withdraw all my life saving meds. Quite scary and this needs to be sorted once and for all. I used to like this company but recently have had more and more issues with them.  Let us hope that 2020 they manage to get their act together and treat us with respect, not lied to or lied about.  

Need to sort it

This is my scooter that needs sorting.  I have no idea how far it will take me or whether the battery is good or bad.  Though it does charge to the top I am very nervous about being stranded outside with no battery power.  So this week I will set off on it and see how far I can go.  Remember we have a great deal of hills where we live so it needs to be able to cope well.  I shall just keep going and when I fear there is hardly any power left I shall ring Colin so he can collect both me and the scooter and take us home.  Though I have no issues on trundling along flat canal paths with it is has been quite a while since I tackled any hills and it is better to be safe than sorry.  That will be one of my tasks for this week.  Exciting life huh!!!!

So life is once again turning around and being good to me.  We have a few hospital appointments to get sorted and I have my yearly colonoscopy coming up shortly but I want to try to enjoy as much life as I can before I knuckle down and take the selexipag.  By the way my date to begin it has moved to March now as there are quite a lot on it and the monitoring of it takes the staff a lot of time so they want to trundle us out in batches.  I totally understand that.  In the meantime I will try to enjoy life to its fullest.

I wish you all the best for 2020.  I am not going to hope for world peace and all of that because that will never happen.  I will however hope for you all peace in your own lives and as good health as you can get.

Warm love to you all and many thanks for all the encouragement I received from so many of you when I really was in despair due to my back issues.  I think if I continue with the physio it will eventually clear up.  

Take care

Carole xxx

Thursday, 19 December 2019


Royal Hallamshire yesterday

Such a long day.  To ensure we arrived in good time as we were told the roads would be very busy we left home at 6.30. Yes we missed the traffic and arrived in time to have breakfast in their cafe.  We went onto the ward early so that I could get to talk to Patricia Nelson who is a patient there at the moment. I had barely spoken to her when I was called out to begin all my tests 40 minutes early which was a bonus.  

I did pretty well in the breathing and the gas test scoring higher than they predicted which was a bonus but let myself down badly on the walk test. This was because my knee on the right side where my back is still bad just kept on caving in and I was fearful of a fall onto their hard floors. A fall is not something I would relish at all.  Anyway it was noted as to why I had stopped and even so my score was not a bad one.

On then for bloods and ecg and then a wait for my MRI.  This MRI was different to the norm for me. The machine is one I have never been in and is bigger that the normal one.  This was being used to get a 4d flow to see what is happening with my heart.  The whole process takes way longer than the normal one but it was so cosy in the tunnel and the time just flew.  We were advised that it would take some time to process these and so back to the ward to play the waiting game.  I did get to see
Alex and Jen for some form filling etc and was to wait to see Prof David Kiely.  

I was anxious as we were to collect Izzy from school but the time just kept rolling by.  Anyway we rang Daniele who said she could collect her so we were able to wait without the panic.

So some good news and some bad.  Yes my heart has deteriorated as we all expected but my lungs were coping pretty well with this though my resting heat rate has gone back up again which I am gutted at.  We all went into David's office and Jen was able to point out what was happening when my monitor took account of all the abnormal things happening with my heart.   We all agreed that maybe it was due to my back and the pain was pushing up all of my levels and I was having more heart episodes through this.  Jen was quick to point out that I had said having the monitor put in place did not hurt a bit and Alex was quick to shoot back that it was because he had done far more invasive things to me which were painful so hers would seem a doddle. 
On then to my levels in my lung which though they fluctuate quite a lot had come down over the past ten days.  A good sign we all felt.  Still though was the deterioration to my heart which needed to be sorted sooner rather than later when the meds might not just work as well with a failing heart.  So yes selexipag it will be in around eight weeks time.  They want my back to be better and pain free before I begin another med that can cause some side effects. We all agreed that the denervation had helped a lot with stopping my pressures rising over the last two years.  

My bloods looked ok and my BNP was measured at 6 which is not too shabby for a patient my age, height and with my condition and weight.  It was seen though that my white cells were rather low a lot of the time and they asked if I had been poorly all of these times.  The answer was no so quite why they drop so low I do not know but I shall ensure I take vitamins which should help to push them up a little.  

So was I happy.  Well yes and no. Clearly I would rather we had not seen a change for the worse in my heart but thankful and grateful to those that trialled selexipag and all our teams that pushed for us to be allowed it.  See we need to work together to get things done and this is once instance that all the hard work being done by the many and the lovely people that trialled it just could have given me a chance to help my heart to recover for a while. So from the bottom of my stressed out heart I thank you all that helped us to get this medicine.  

Now it is back to the real world where I really want to get on and do things on a daily basis instead of just doing very little ` and very rarely.  I hate just sitting and feeling useless and I hate that my back is still painful but  shallop push through until I begin the new med.

Cla ire Jones

I feel sure you were all shocked and sorry to hear the news that we lost Claire to this terrible disease. She was way too young to die and she was such an inspiration in the world of ph as she showed her determination to continue her work tuning pianos despite having an oxygen tank and feeling rotten.  She would not let her illness define her and most of us saw her on the television where they were showing her going about her work in Wales and always with a smile on her very pretty face.I am not sure what happened as I last saw a post of hers in August but clearly something changed in her condition and we lost her on December 13th.  Such a sad day for us all and the world of ph and I am sure we all send our condolences to her family and friends.  Claire was a remarkable lady and she will be missed so much. 

Will I make it.

We have been invited out for an Indian meal tomorrow evening and I am hoping I will make it as I do love the restaurant and the food is divine.  I will see how I go but it would be lovely to get out for a while.  Whatever even if I cannot go then Colin will have a nice time and will come back and regale me with all the news and happenings going on.

So another blog with nothing of interest to tell as  clearly am not up to doing much but  thought if I sent it out at least you will know where we are up to with this silly heart of mine.

Swell it is that time of year where lots of parties are goiing on and lots of fun to be had for those that go mad at Christmas!  Do not work too hard ad remember to let others help you in the kitchen if you are playing host.  

With that I will sign off and hope my next blog is far more interesting than this one.  I just might have improved so that I can at least get some exercise in which would be lovely.

Take care one and all and mind how you go if we do get the snow as forecast. 

Warm love

Carole xxxx 

Wednesday, 11 December 2019


It is certainly true that the last few weeks have not been kind to me in the least.  For quite a while I have felt a change in my pah and that was confirmed by my specialist who said my pressures had risen to a big degree and they were just not coming down.  I think I already knew as we get to know the symptoms and mine were not improving.  On top of that my heart rate (resting) had risen by quite a lot and again never moved downwards at all which was not a good sign.  This was a huge blow but I knew I had the best team working with me and they are trying to get me an MRI appointment to see just what is happening to my heart.  

Selexipag was talked about and it may well be that is the best chance to get my resting heart beat to lower but there are so many ifs and when's right now that we are in a sort of limbo. On the good side for me is that as I have both the chip in my pulmonary artery and the one measuring any abnormalities in my heart at least they are being checked daily which is quite reassuring.  

On top of that we went on holiday with friends in our motor home and I lasted only a night before I just had to come home.  Somehow before we went away I had done something to my back which  I thought would just go away in time.  I was so very wrong and one night in the motor home had me almost screaming in pain.  With a heavy heart I left to return home which was very sad as I had been having a nice time.  In fact I had just had my first ever flavoured gin ( I am not a drinker but decided to try it and loved it) and the holiday seemed set fair for us. My back swiftly worsened until I could no longer put my right leg onto the floor, I had to hold onto surfaces and hop, excruciatingly painful.  

A visit to the doctor was a must so off we went.  Now it is known and on my records that I cannot take opiates at all. They make me so incredibly ill and no amount of anti sickness medicine can combat that at all.  I have it imprinted on my medical alert bracelet too so well documented. The doctor examined me and said I would need to take co-codamol and I very quickly refused telling them to read their notes. She however was adamant that despite my notes I would be just fine with these. Now you might ask me why I listened and accepted the meds. Well believe me I was in absolute agony 24 hours a day so was willing to believe anything that would stop the pain. This was the beginning of a nightmare that is still to a lesser degree affecting me now.  

Following instructions to take with food was difficult as due to the pain I could barely eat.  However I forced down food and took both the pain meds and anti sickness ones too.  This began a nightmare I never wish to endure. The sickness came, every sip or bite of food came straight back up or if I was fortunate and thought I had kept it down it would come up whilst I was asleep and I would wake to find myself throwing up all over the bed.  It did not have a chance to ease my pain so it was just one big nightmare.  Sick bowls were placed all over the house and still l sometimes  I could not make it to reach one. Three o clock in the morning was the time when I would be screaming in pain whilst Colin would try to help me to walk around the house in the hope of relieving the spasms but that was no good either.  I must admit I felt a despair so big I do not believe I have ever felt before.        

We returned to see another doctor who insisted I continue with the meds but we were just as adamant that could not happen.  By this time I had lost eight pounds in weight as not able to keep anything down despite not taking the meds.  We rang my specialist to tell him what was happening as my pah meds were coming straight back too.  He was very concerned and made sure that certain blood tests were done to check potassium levels etc.. In the meantime I was referred to an MSK specialist who was very lovely and very thorough in his examination of me.  His name was Sam and he was very concerned.  He said he would send me for an MRI urgently but that even so it would take weeks to come through.  I despaired so we agreed that we would go for one privately at a cost of just under £1000.  We had let our private health insurance lapse one I was diagnosed with pah as it will not cover it so we just let it go.  I was also refereed for urgent physio too.  By now I could see no end of this torment.  It seemed my body was letting me down in so many spectacular ways. I also would find my bed covered in blood on waking and i was having many nose bleeds.  A trip to the INR clinic showed I had a INR level of 5.8.  It seemed nothing about my body was working  

For those of you with the heart monitors I must confess I was clicking mine rather a lot throughout all this and it was reassuring ( in an odd sort of a way ) to learn that all of these clicks by me had been monitored and checked out so you are blessed to have such care.  I was told that each time I clicked it I really had had an abnormal happening with my heart so it is good to know they could check them all out without seeing us.   

Well done Michelle Wood who had hers fitted yesterday.   I hope you feel a little more reassured now.                                      

Despite not taking the pain killer meds as they were clearly not doing me any good but in fact harming me greatly the sickness just did not stop. Every bite of food just came back up.  

A MRI scan appointment was put in place but they needed a referral letter. Colin took the very detailed report from the MSK specialist into he unit.  This apparently was not acceptable as it needed to come from my very inept doctor. Clearly this takes time to organise so I lost the place for that scarn whist we waited for them to send the much needed letter.  My appointment was moved to today but I received a call yesterday on my way home from the physio.  This was from the private scan guys who said that as I had said I had two chips in my body, one in my pulmonary artery and one near my breast I needed to let them know the numbers of the chips and all sorts of detail I just did not have.  In frustration I asked them to let my appointment go and I would get back to them when I found out the info. Though I know I can have MRIs with the chips in they of course have to cover their backs so I do understand. 

Once I got back home I discovered to my horror that I had also lost my engagement ring.  The weight loss would have accounted for that and to say we were gutted is an understatement.  No replacement ring can ever replace the original one so yet another blow.  Of course we have rung up the hospital and asked them to look out for it but my hopes of getting it returned are almost zero.  

Last night my pah specialist rang to see how I was feeling.  He said he could furnish the clinic with all details needed for an MRTI  but I said lets just wait a while.  He said he could see by all the readings they were getting for me that I had been very very poorly.  I said I assumed it was all because of the pain being so intense all my other issues but he said no, sone would be because of my pain but they were quite confident that some was because of my pah rising as quickly as it did and my heart rate not coming back down. So we play the waiting game and some small part of me thinks I have done ok to make it so far but another part of me thinks heck - I have not made it far enough.  I have a little girl Izzy, my grandaughter that needs to see more of me.

Izzy has been a star. She comes around and helps me with my physio exercises and makes sure I have things to drink close by me. To be honest she has made me want to keep going when my mind was saying enough but that was the pain, not the pah. I still have lots to do re pah as they are getting loads of info from both my chips and trials and studies are coming up all the time for us.  

So I wish you all well and  will shortly be returning to facebook. I do thank all for the messages that were sent to me and phone numbers if I wanted to chat. I thought these were so sweet but to be honest I had felt so poorly I just wanted to isolate myself. I am however coming out of that slowly and will I hope soon be pain free Regarding the pah well I will work with my doctors and let you know the outcome when I know more myself. I really miss exercise but right now anything like that is out of the question. I will return though one day to it as I know it is very important for us. 

Warm love to you all

Carole xxxxx

Friday, 1 November 2019


To be totally honest I have not felt the best for a few months but as we ph fighters are tough I have tried to carry on without showing the outside world. I still achieve most of my daily goals as I push myself but then the price is a very early night or even afternoon in bed.  I tell everyone who asks I am doing OK and I am - sort of.  I know I am blessed.  I see many in such a worse place suffering with this but I also know my own body and I know how I feel.  My right lung is quite painful now but not so sure of why. My breathing is getting more laboured and you know how it feels when it just seems too much effort to do that so small thing - well I have now hit that mark.  I am hoping it is that I did so much on holiday it is just my body's way of getting me to take a break but we shall see.  If no improvement soon I shall definitely discuss adding another med, maybe the selexipeg that we did discuss before.  Yes I know the awful side effects having had the infused version at the beginning of my journey but I also know if I can bear to ride out the storm the future should look more rosy.  We shall see.  I do have an appointment coming up next week to check the new chip inserted so I shall discuss this with the team when I see them.  I know to look at me I look fine, to talk to me I do not let it show but oh my word inside, well I know how I feel.  Who knows maybe upping my water tablet could be the answer though how anyone can wee out more than I do is beyond me with the dose I take now.  

A good friend Taylor who lives in the USA contacted me to say that one of her young friends, a married mom with twins has been diagnosed with ph. Clearly they are all gutted but I know if she comes onto our closed pah group she will get much support from our community who will do all in their power to help, advise and comfort. I get so much support from the PH UK Support group here and other ph groups I have joined. We are all in this together.

Holidays and friends

We saw so many friends when we were away which was really nice and a chance to just sit and catch up was truly lovely.  We feel so blessed that all these friends take time out to add us to their already overflowing schedules and meet in new places to us to show us how things in Javea and surrounding districts continue to develop.  I am always happy to see that Javea continues with its rule that they will NOT allow high rise buildings.  It is such a peaceful serene place and the views are amazing, high rise would take all of this away.

Freda and Arthur took us to a new bar for us on the 29th floor (no not Javea as I have just said no high rises here) but in Calpe.  There we met up with Ro and Tony and spent time on the amazing sun terrace at the top of this new build hotel..  The views were truly stunning looking all over calpe and the water,  it was a great experience and one I hope to do again.  Afterwards we went out for a superb meal and I swear my waist band grew two inches.  

Lots of meals and meet ups followed and my lovely friend Christine who I did all of my genealogy research with cooked us a most delicious meal, so good I have taken the recipes and will cook them this weekend when we have our friends over from Canada.  I am sure they will love it. 

We went with Christine to the Marina in Denia where the 26th largest privately owned ship in the world was moored.  It looked amazing and by the side of it was just one of the two small ones owned by the same man but costing a mere 8 million and 5 millions respectively.  The main ship is called Lady Moura and the name and emblem showed in mighty splendour on the front of the ship is made of 24 carat gold.  It cost 250 million to build.  At the time it was the 8th largest privately owned ship in the world but time has pushed it lower down the ladder.  

At the same time as we saw this ship we also saw them removing the last of a ferry that crashed into the harbour wall when sailing in.  There were many people on board and it must have been so scary.  It took three weeks to get the cars off, some damaged beyond repair.  It was decided the ferry was old and so they dismantled it piece by piece in the harbour.  The cranes and dismantlers must have been busy day and night with the divers working below water level by the time we got to see it,.  I reckon the captain would have been in a bit of bother!!

One really good friend Rhonda did us the best service she could ever have done  She introduced us to the new owners of our Villa we had built.  We were unaware that the people who bought it after us had sold it on but she knew and got in touch with Paul and Jules to tell them we were on holiday and would they like to see us.  They were more than happy to show us around our old home and it was interesting that we could actually show them some things about it they did not know!  They were both anxious that we would be ok looking around as clearly the villa meant so much to us that changes can sometimes hurt.  We are not that type of people though and to be honest there was no changes really just furniture etc.  We all got on soooo well we felt like we had known them both forever.  On going down from the villa to the apartment I said how we had loved sleeping here when the villa was full of guests that were elderly so we let them stay upstairs in the main place while we were more than happy to decamp to our apartment. I said how we always came around to look at the villa when we were on holiday and I used to wish we were still in it.  To our great surprise both of them said we must stay there the next time we are over - in fact the most generous offer of all is that we house sit their cat when they are due back in the UK early next year!  Now they know nothing about us but trusted us with their precious house. We were overwhelmed and I must confess to crying a little.  However as we just might be facing Colin having his fourth hip op we cannot give any dates and times until he sees his consultant next month. Should all be well though it would be an honour to cat sit and take care of their beautiful home. We can assure them it will be left in good hands, the villa and the cat will be spoilt as Colin is a cat lover.  

The apartment we rented this year was the same one we had last year but my oh my the change.  We thought it would be for the better as she told us she had decorated all throughout.  We had hoped she had got rid of the many vases - huge ones - of the plastic flowers but sadly no, they  remain in the apartment, lots in every room.  The cleaner had certainly not done a good job of the cleaning.  The three of us ( we took a friend) all felt the bedding had been slept in before us so we washed them all, plus the floor was so filthy we needed to sweep and wash all the floors.  Kitchen surface needed cleaning before we could use it and so it went on. There was an issue with the water pumping out into the toilet all night, such a waste of water but that could not be resolved whilst we were there.  The owner was gutted to hear this and told us she was in Spain and would check it out.  She said she had a few complaints about her cleaner and clearly needed to find another.  Anyway she checked out the place when we left and thanked us for leaving it in such a lovely clean way.  She told us she was replacing sone of the things that were so awful, sticky and tacky as she had a five month let coming in.  Such a shame her cleaner was not up to the job as the place itself is lovely.  Anyway we had a smooth journey back to the UK and home.

Home to reality

Well back to hospital visits, MRI for Colin bloods and check ups for me.  Life goes on and we quickly step from holiday mode to getting on with it mode.  

The house is fine and we actually had the architect come around unexpected yesterday to take pictures. Fortunately we are both naturally tidy so all was in its place and he took many pics for a brochure and he promised to come back and take some with his wide angled lens or some such thing and that we could have copies.   He loved how we had finished the house off after the plans were handed over.  I now need to write a testimonial about his company and the great design he did for us.  We continue to love living here next door to our lovely family, 

Today we have a guy making us a barbecue area and sitting area just behind the house.  Then the last thing will be in two weeks fencing and we should be able to say ENOUGH, all done.  

The fox or foxes as there are many did no damage when we were away but I do fear most of my tulip bulbs planted in our beds have now gone for food for the squirrels.  We shall see in the spring when they emerge or don't from their beds. 


First to call for Halloween, Izzy and brother Harry (I think) heading out for the evening.

So back to reality with a bang though we do have a holiday in our motor home coming up with friends. We will take up our life of normal every day stuff. Izzy starts her piano lessons again next week plus she has moved up to yet another grade in her swimming class. We take her to these and we love to see how she progresses. She is just so happy to have us home where we belong she tells us. Though we face timed her every day she still likes to know we are just next door.  

Am going now, I feel rather sick!!!!!

Warm love

Carole xxx

Thursday, 3 October 2019


Minimal invasive phentotyping of arrhythmia in idiopathic pulmonary arterial hypertension

Quite a mouthful for sure but I am so proud to be able to say that I have had this fitted and there are many ready and waiting to to have theirs done go so before long we will see more and more people joining this study. I know Mandy Vickers is waiting for hers as is Andy Sweeney. Just let me tell you a little about how easy this was.

I met Alex and Jen in the coffee bar of the hospital where we discussed life in general etc and we moved down to the bowels of the hospital when the room for the procedure was ready for us.  All was so smooth.  I signed the consent forms and I was told how inserting this device would be carried out.  The device is small and slender and very neat.  About the length of an aaa battery.  I was given a  device to hold and feel it etc and was amazed that this would be capable of teaching our pah specialists so much about our hearts whilst struggling to live as normal a life as possible with pah.   

Jen explained that she would use a scalpel to cut a hole in my skin and then something she called a push to make a hole large enough to take this device.  Once the hole was made she would then push through the monitor and then stitch or use sterra strips to close the insertion hole and all would be well.  She also said a sheet would be used to prevent me from seeing what was going on. I asked if I could see as things like this fascinate me.  Jen was a little wary until she asked Alex if he thought I would be ok and he said I would be fine watching it.  I have always enjoyed watching things on he monitors like the cardioMNEMS and the insertion of my hickman life etc. 

All  that was to no avail though as once i was laying dow with the blood pressure and ecg monitors going and I was covered on the site with sterile sheeting it was impossible for me to watch anyway.  I could not see at that angle.  However Jen was great and showed me the scalpel she would be using and the pusher etc to form the hole.  All was well.  An injection to numb the site that I did not feel at all and away we went.  Once I was sheeted and numbed the procedure took about two  minutes and it was done!  Last thing was some sterra strips to bond the site back together and a dressing that will stay on for a week  Up and dressed again it was back out to see the monitor that will sit at the side of my bed to take readings and send them off to be checked and monitored.

The other device I have will go on a lanyard around my neck and under my jumpers etc and be used if I am out and have any problems, palpitations etc.  I will just press it to my device and then let the team know of any concerns.  So with that and my cardioMEMS machine I am truly computerised at last. I have a card  to carry with me saying what has been fitted and can be shown at airports etc as it will set off a monitor or hospital admissions and so on. This was such an easy procedure to have for such an important device.

This study will go on for three years.  After that though it will be possible to remove the device it is highly likely that most will just leave it be where it is. After all the skin and muscle will grow around it and it will take more time to remove it than it did to put it in.  It will not cause any harm so I for one will just leave well alone after the study finishes.  If anyone is having it done and wants to ask me any more questions then please do not hesitate.  

We discussed the cardioMEMS and all agreed it was time to up my game a little now and take more readings daily so they could see my pressures at different times. They are also looking forward to seeing my readings once I am off the airplane when we go on holiday to see any changes in lung pressures. Alex fancies doing a study on the effects of air travel and ipah patients.  Thus will give him some insight.  

Fox Watch

Our lawn has grown really well since Colin spent his six hours patching up the mess after one of them thought it would be fun to make so many holes and pull up strips of the newly laid grass.  We were fortunate we had some rolls left and once all was back together we did take a couple of the rolls and lay them on top of my new and unused raised bed.  There it has taken really well so if we have any more problems we will at least have some decent bits to patch a little of it.  So far one fox has a been captured but we still see a few each night and cannot resist doing a bit of fox watching.  We do not mind them coming in as long as they do no damage. Our fences will be going up in the next week or two and they are too high for them to climb over so maybe all will be well.  Time will tell.  I suppose at least if they are busy round by us they are leaving the sheep alone etc.  The sheep are only a field or two away and I do worry about them when they are carrying their lambs.  Anyway the garden is fine but it does need dead heading and yet unless I use planks I cannot stand on the lawn yet so it will have to wait.  It is all knitting together nicely now and already growing down into the soil below to form a solid mass. This too will hopefully stop the foxes playing with the turf.  We shall see.

Going against my better judgement

For me I love school uniforms as the children cannot try to outdo one another with the latest trendy pieces of clothing or the designer gear some like to show off with. I have never believed small children should be dressed in designer gear - this is a personal thing and I do not intend to get at anyone who thinks differently but small children are not in clothes long enough to warrant the high price tag in my humble opinion.  

Every year we have enjoyed buying our grandchildren the school coats.  I actually look forward to getting the winter ones and seeing them set off to school all warm and cosy.  The parents appreciate this small gesture and I enjoy looking at all the different styles etc.  We like to get them something functional but nice too and not boring. This has never been an issue until this year and Izzy.  She is quite tall so we like her coat to be long enough to keep her warm, not one to just below the waist as too cold on the horrible cold mornings.  Well she has just turned nine so I bought her a decent coat for aged 9/10 thinking it would be fine.  No a bit of it.  The cut was so wrong she looked so frumpy in it and though she said it was fine it clearly was not and her mom and Colin both agreed with me too.  

Off I went to exchange it. Though it only cost £38 I still wanted it to look right so I looked for one aged 10/11 only to be told they did no do that size. They did all the rest but that size most manufacturers did not do as they felt 9/10 and 11/12 covered it all.  WRONG!!!!  I wanted a 10/11. I went to numerous shops and was shocked to be told the very same thing.  I rang Colin in desperation and told him how poorly I felt with the stress and was going to go against my principles and buy a designer coat aged 11/12 just cos the 9/10 clearly would not do and the store I bought the original one did not have that size in the same coat. Well the designer coat  I reluctantly bought her when we tried it on her fit great except for the sleeves which were way too long.  This one was a Jasper Conran coat and once again Izzy said it would do!!! Well it would not do at all so back to the drawing board.  I haver at last found another coat and this one is actually for a ten year old so maybe it will do but heck - it rankles buying a child a Ted Baker coat.  I so resent this but what option do  have, she is just at the in between stage they do not cater for.  So Saturday will see us all set off to Leeds and to the shop where I ordered the coat in. If this one does not fit then I have no clue what else to do.  I have tried supermarkets , M & S and all the other big stores plus Next etc.  I will give in and hand the task over to her mom if Saturday does not go down well.  If it does fit though I swear this will be the last designer coat I will ever buy for a child.  To me the price tag does not match the coat and she will not get any more use or wear out of it than the £38 coat I wanted her to have.  So wish me well for Saturday, make or break time. 

Such a small thing to take so long

AT LAST!!!!!  For a year now we have been promising to get some of those felt protectors for the bottom of our dining room chairs. Oh the grating we have had to endure every time we pulled out a chair over our porcelain tiles. It has been awful and set my teeth on edge. We kept on saying we really needed something on the legs of the chairs to stop it but time and time again we forgot  Today we had a few minutes to spare before leaving for the hospital so we used the time very wisely in my eyes and we bought some of those felt things that just stick to the bottom of the chair legs.  What a difference this cheap fix makes.  A year we endured the noise and a £3.49 fix has sorted it - its the little things!!!

Winter is really setting in

I can tell this as we have for the first time since we met each other bought a new duvet of a different tog rating.  We always liked just a 4 1/2 winter through to summer, it was always fine, we were always snug and warm. This year though for some unknown reason I have felt just not quite warm enough in bed.  Off I went and bought a size 7 tog rating, high enough for us and it does the job well.  I am now feeling warm enough without over heating and without all the weight of a heavy duvet on top of me. It has brought it home to me though how the weather is changing and the lovely warm balmy days we enjoyed so much this year have gone.  The leaves are all falling off the trees and the last of my apples have now been picked and waiting for us to devour them.  The last of the strawberries need picking and a few odd tomatoes and that is it for this year.  Time to batten down the hatches for the weather ahead. 

The good news is though that we will be spending some part of winter in Spain so we are really looking forward to that. Already we are planning barbecues and lazy nights listening to the waves lapping on the shore whilst we catch up with good friends.  Lucy and her hubby will once again move in here for maybe the last time as her baby is due in January. We will miss her so much. She is looking for a bigger place as her flat does not allow babies. I hope they find one close by.  

Well Colin is out - pint night - a once a month thing with my daughters fiancĂ©, Colin and his son and another lovely guy who is friends with all of them.  They go to a local pub so no need for cars though in fairness they drink shandy mostly so they could get away with going further should they wish.   This is my night to be totally lazy and quiet as no interruptions of my favourite tv channels.  So I will leave you all now and tomorrow when I see Colin I will get him to take some pictures of the new piece of equipment now in my chest wall.!  

Now going to do a bit of fox watching before my tv programme comes on.  

I wish you all well and send you my best wishes and hope you all stay as well as you can.

Love as always

Carole  xxx

Thursday, 19 September 2019


Another research study

This study involves placing a insertable cardiac rhythm monitor under the skin near to my heart.  The device is small, less than 1 centimetre in size. The purpose of this study is to assess the nature and burden of abnormal heart rhythms in patients with PAH

As those of you suffering this awful disease knows we often get palpitations or odd things happening with our hearts.  Most of you will have been given the ECG monitor at your local doctor that is kept on for up to 72 hours.  This new study will be able to monitor any abnormal beat for the length of the study.  The study lasts for three years.  With this, along with my cardioMERMS the specialist will be able to learn so much more about PAH affects us.  I am hoping to have this procedure, which is nothing of a job it seems quite soon. All approvals are now in place so  am just wait for the call.  It does not involve a stay in the hospital other than a short rest after this is in place.  I will have a small device that I can place on my key ring which I place over my heart when I feel odd things going on.  As well as that a larger piece of equipment, though not huge will sit on my bedside cabinet and in the night will take off all the data gathered to be assessed.  I will not feel anything and actually it will likely collect data when I am asleep.

I feel blessed to help in studies this way as I - along with you all want to further the studies into this rare and little known disease. One day we will beat it, that day comes ever closer.

My watch - which also is logged to Sheffield has stopped showing its face to me, though they can still see how many steps, heart rate etc.  To this end a new one is being sent out from Apple and I will at last be able to see the time!


There is also a trial I am hoping to be able to get on but the truth is I know very little about it at this moment. My specialist is looking into it for me to see if I am eligible to be on it.  I believe I would   have been able to normally but the problem is as my pressures are measured daily they are quite dramatic in the ups and downs. It may well be that one day my pressures are too low, the next day too high! So though there is all the good that comes with having my pressures monitored daily the downside could be that I miss out on the trial that just may be the cure!

I have been waiting with bated breath for the trial from Papworth, the one which Nick Morell is playing a big part. Sadly I was told it is still way off. It might even be up to two years away yet so we will just have to be patient and all try to join any other trial we can get onto as one of them might be the eureka moment we are all praying for.  In the meantime we must all live our lives to the best of our ability and enjoy each day as it comes.

My normal ph appointment

This time I had the great pleasure of meeting for the first time another ph patient called Nigel Wilson.   What a lovely guy and it was such a pleasure to have a natter to him about his journey through these ph roads. Nigel also suffers from schleriderma ( feel sure I will have spelt this wrongly) In between both of us having our ecg's, shuttle test, bloods and seeing our doctor we never stopped talking!  It is always  pleasure to see a facebook friend in the flesh and this was no exception. Sadly Nigel was in the middle of his shuttle when I left so Nigel  hope all went well. 

My shuttle was hampered by this silly machine they now put round our necks to measure oxygen.  I never minded the one round our wrist and then fastened to our finger.  It was not intrusive and we just did the best we could. With this contraption they now use it was a nightmare.  Every move I made the silly thing bounced around from aide to side, banging into my arm or hands. It was not nice so after a while I said I just could not cope with it and was told to stop.  I could have done more on the shuttle but for this so was very disappointed indeed. I wish they could go back to the older method.  

It was a coincidence as the doctor I saw here was the same one I had seen the day before in a different clinic at Sheffield. This did mean that she already knew most of the things she was to ask me so it did mean our meeting was quite short. I think it had been  27 hours since I last saw her. This particular doctor is very heavily involved in the heart thing I am to have inserted so we had already dealt with all of this.  


At last our lawn is to be laid on Saturday.  I am so excited as it seems we have been in limbo with it for so long, though the reality is we wanted it right and it takes time to lay a really good lawn and to get all the prep done correctly first. The final count of crocus bulbs laid now is 360 of varying kinds so we should have a lovely display come the spring time, though quite how many are left depends on how hungry the squirrels are and they are foraging for food  now for winter.  I already saw a few had been dug up by the holes they left behind.  Lots of tulips have been planted in the beds now too, again all varieties so another thing to look forward to. I always plan ahead as I like to have something to reach for, some goal.

Our paths are all indian stone and we needed to protect if from dirty feet, frost etc.  This involved cleaning it all well and painting each slab twice with a sort of paint that seals the slabs.  I did do some of it on my own a week or two ago but the rain came down after two hours.  It must not be allowed to get wet within six hours so that was a wasted effort and a waste of money. This time Colin and I did it together working as a team.  As I could actually sit down on the slabs while doing this it was not as bad a task as I thought it would be.  The good thing is that now even the old slabs that once laid had been walked along by many builders in their muddy boots etc is now as clean and nice looking as the new ones laid recently. I have filled some big pots and laid them at the back of the house and they look really nice so all in all things are moving on very well.

I went to our local nursery as they are in the middle of being taken over.  So many plants were reduced and I was able to procure two clematis reduced from £20 each ( I never would have paid so much, they would have been overpriced down to £1 each. I also bought plants for some tubs and some winter cabbages.  

Colin is painting our bin store today. It has needed to be painted and shelves put in for so long but is low priority.  It will look nice when finished and I will be able to use it to clear some of the shelves in the garage of all the gardening stuff accumulated over the year.  Then the next task is to complete my raised bed, already in place but needs so much soil and compost added. Last but not least will be our barbecue area and so we move onwards to our goal of total completion so we can get more holidays in!

Away with friends

We have just booked a few days away in our motor homes with friends. One of them has never been away in a motor home before so is really looking forward to it. We have chosen a place we know well, where we can get good walking in. Also great for mobility scooters and wheelchairs.  A golf course close by offers really great food at a very reasonable price, all home made on the premises and a deli around the corner bakes delicious cakes (sin free of course - not ).  We are really looking forward to this as it comes right on the back of our holiday in Javea so the blow of returning back to normality will be lessened somewhat.  

Poo day

Not literally of course but you know how it goes. We have had an incredible few days with places to go and people to see.  All enjoyable but Saturday was a bit too much.  We began with a ride over to York to return a suitcase to a store and went straight onwards to Leeds to get a new case for an apple phone. Quickly back into the car and off to Huddersfield to collect a parcel.  Before we had time to catch a breath we went to visit with a friend over with his family from Australia.  We had a lovely time and a quick visit turned out to be a party with rather a lot of guests. This family is well known for their great skills in the kitchen so the food was just so delicious, chicken curry or goulash, all very tasty followed on by home made scone and cream and jam made by a new to me friend.   We had a thoroughly good time and it was so nice to catch up with the family again as their visits to the UK are not as frequent as we would all like.  All the family were over this time though and it was a very special time.  

Sunday turned out to be a day from hell.  My oxygen level was way too low so out came my portable oxygen and very pleased I was to have it too. I never left the bed all day as I knew my body needed to rest, it had just been too busy a time and sadly we just can do so much and we have used up all our spoons as we say with pah. So yes Sunday was my phat day (pulmonary hypertension arterial torment) and was wasted!  How I hate these days. OK maybe not wasted really as I knew my body needed to recover but it so annoys me that after a busy time we know we will hit the lows and need to recover. As it happened Monday was a bad day too but so much rest did me well.  Fortunately Tuesday was ok and I was able to resume my normal working function - as good or bad as it is. 


She turns 9 on Saturday and she is very excited indeed.  Colin has asked, though in a tease, if he can join in her party and was given a very disparaging look. I do not do birthdays, gave them up quite a while ago! She is hoping for an LOL house from her parents but she will just have to wait and see.  

We are just in the middle of getting her more piano lessons as her teacher left from school.  This gentleman we are looking at has performed in many televised orchestras and is also often on the Proms so he should know what he is doing.  I have explained she is not one of the pupils who will do too much out of class except with her granddad which is a pity but even so any learning is good. She is a member of Stage Coach so we believe being able to play the piano will come into that quite well too. 

I always smile when I see her pick an apple from the tree in passing.  So my garden has come into its own for sure.  I now want to add a pear tree, again on a pigmy stock and hope it takes well.  

So there you have it,  a catch up on what we have been or going to be up to.  We also bumped into a friend we have not seen in a while and we have been invited to their new house to join in with a t party for cancer charity.  Colin will love this as her husband Martin and he can talk for ever about photos and photoshop or whatever all these things are on the computers these days.  I am really looking forward to this.  

We have friends due to arrive here in the next few weeks from Canada and we always enjoy them staying with us.  They have two grandsons who are just mad about dinosaurs so I have bought them two huge dinosaur eggs which hatch out somehow and also - I know this sounds daft - but some dinosaur plasters.  Clearly they are little boys who will always be getting scrapes etc.  They live in the wilds of Canada so I do not think they will get with ease all the things we can get here.  Anyway it is the thought that counts and if they are anything like Izzy it will not be long before they will be sporting one or two of these!

Whose baby is this

A walk - well a gentle stroll along the canal bank the other day had me wondering when I saw this in the water.  Whose cherished teddy is this. The poor thing came to a watery grave anyway.  I remember us losing a teddy Izzy had and we had to retrace our steps for what seemed like miles, though likely it was not to try to find it as we know how much she treasured it. We were fortunate but sadly the child that owned this will not be so lucky.

Anyway I am rambling as my friend would say so time to go and take my lunchtime meds.  I shall then pop into my local chemist to have my flu jab.  

Take care all and warm love to you all.

Carole xx

Tuesday, 27 August 2019


As most of you know we have been away again in our motor home.  One lovely consequence of moving around means that I just might be fortunate enough to be in the vicinity of another ph patient.  This time we were in Norwich.  Beautiful place this certainly is and we spent a night on the drive of our niece and her hubby.  This couple certainly have the green finger touch and I was so shocked as to how their garden had come on since the last time we saw it.  Veg were growing in abundance as was fruit, the chickens were laying well and I can testify the fennel was certainly showing who was boss as it kept catching around me as I went from motor home and into their house.

Our welcome was a very warm one and made all the better as they had no idea we were going to park on their drive until the evening before. Whilst I was there I wrote a post asking if anyone lived close by. Mandy Leonard wrote that she did, in fact only around 7 miles from where we were. Without ado off we went  to park on her drive and have my first ever look at this lady that I owe so much to.

Now yes I know about my A Team, I mention them so much but I knew just what a huge debt I owed to Mandy.  You see Mandy was diagnosed with PAH around 2005 after having symptoms for years before that. Now those of you with PAH know that the new meds are slow to come onto our space, slow to be allowed etc although as we are are a rare breed we do get special allowance from the government to say that ours can be given to us without all the delay needed for most meds.  That is because without our meds we absolutely will die.  

So think on this -  here we have a lady who had never heard of PAH, scared for sure and not really much out there other than channel blockers, bosenten and iloprost etc.  The specialists got their heads together and after talking to Glaxo Klyne who was hoping to trial a new drug they believed would help they asked Mandy if she would be willing to trial it.  There were just 6 people trialling this med.  Generally when I trial there are around 20 so only a small number for ambrisenten indeed.  Well long story short really as those of you on it know the success of this particular drug and that also unlike Bosenten which has a greater danger of the two drugs to cause liver and kidney damage this med appears to be a good one for PAH.  I myself switched to it after coming off the hickman line and have been so grateful ever since.  

After the trial the drug was expensive and the government just could not, or were not willing to pay for such an expensive medicine right there and then. It all needed to go before boards and talked about at length. The drug company though saw just how well Mandy for sure was doing on it, I cannot say about the others as I have no knowledge. They allowed Mandy to continue to take it without charging the NHS who would not then have allowed it and always asked how she was doing whenever her packet of this life saving drug was ordered. In time of course the drug was approved and the money found to allow the drug to be available for the many of us.  Thank goodness for that.  

Mandy looked great, here she is 15 years after diagnosis keeping a beautiful home for herself and her hubby and son. By the way her son is really gorgeous if there are any young single girls around that area!!!!!!  He just might kill me for that. Anyway the crux of the matter is without this drug I just might not have remained as stable as I am. I might have liver damage or kidney damage etc.  So yes to me Mandy is top of my list for helping me to remain alive after my initial diagnosis.  It is thanks to people like her that I decided to trial as I knew of the benefit I was getting from drugs trialled by those before me.  So yes  - Mandy a HUGE thank you to you and I hope you continue to do as well as you are doing. I will not give up trying to persuade her to attend our conference.  A lot of the newbies can see how well she looks 15 years after her initial diagnosis.  It will certainly be a huge boost to their minds.  

Home again

My family next door are home again after their holiday.  It sort of felt lonely for the few days we were home and they were not.  Nobody running around the garden, no rabbit hopping merrily around in the sunshine and no faces at the window.  To welcome them back I took them flowers from our garden for their family room and a few sweet peas for Izzy as she loves the smell of them in her bedroom.  They asked me to get them bread and bacon as they were craving a bacon butty!  Turkey of course does not serve pig and though they rarely have it here I think it is what you cannot have you miss. So up got Chris early this morning and made bacon sandwiches for breakfast for himself and Danielle.  Happy faces for sure.  

We appear to have got rid of Mr Fox as he has not been seen for over two weeks now!  I hope it continues.  I am giving the box of bone and fish meal we bought for the garden to a friend as studies show that foxes are attracted to it, anything to stop it coming.  So there you have it, it appears that male urine, lots of it, in particular the first morning wee and my smelly dousing of all the plants with boiled up garlic and scotch bonnet chilli seems to have worked.  I am very relieved.  I used to see it in the driveway at 4.10 am each morning. Strange how it always came at the same time and I always seemed to be up making a call of nature. Anyway I saw it three times in the same place at the same time.  It must then have run around and came back to attack our plants from a different angle.  Well no longer does our drive smell of fox pee and poo.  

Today I woke up feeling good, no PHAT day for me {pulmonary hypertension arterial torment} or at least very little.  Would that all days were the same. So as we had just had more indian paving stones put down at the back of the house I decided to jet wash all the ones that were already down.  They were certainly grubby compared to the new ones.  I ended up with sand in my hair, face and I will not tell you how bad my clothes were as they were unbelievably bad.  Chris said, and he was correct, I should have worn my outdoor wet weather gear but the sun was blistering hot and I think I would have died!   The problem is that doing one job sets up another.  The sun terrace threw all its sand onto the bi-fold windows and so another job to do, plus all the glass surrounding it needed to be sorted out.  Fortunately I did manage to complete the job and did not have to hand it over to Colin who himself was working very hard cutting all the hedges.  So I am rather proud of my accomplishment today and thank you pressures for staying good whilst this was going on.


Talking about pressures as you know I have the cardioMEMS machine.  I thought I was doing pretty well, I really did so it came as a shock whilst we were on holiday to be rung by a member of the team and be asked to make an appointment to see Alex.  It appears my pressures have been steadily rising for some time.  Strange how today must have been good for me to do the job that I did.  Yes I do get  tired a little earlier, I do puff a little more than I did and yes that annoying cough is showing its ugly head a little more but generally I have no complaints.  Anyway the top and bottom of it is that I have an appointment at the Northern General in Sheffield on the 12th September.  

At the same time I attend this appointment  I believe we are talking about two trials and hopefully one that just might be ok for me to join.  I know many of you  - like myself - are still waiting for Nick Morells trial from Papworth but I have heard nothing about it being that one though I will of course post if it is.  Well of course I will post no matter what trial so watch this space.  

Looking ahead

Loads of lovely things to look forward to which I believe gives me a huge boost.  Our niece is coming to stay, though just for a couple of days. I have a lovely ph friend called Paula Joanne Smitham and her fab hubby coming to stay for a few days in September too and just maybe, in the offing a friend who lives in America might be able to come over and stay with us for a while.  We also have a holiday booked a little later back in Javea and have already pencilled in lots of diary dates to catch up with our many friends who live in this beautiful town.  So I will certainly do my best to keep on top of things, to stay healthy and well.

Ah there goes the bell.  I am hoping it is a small package containing the sheets that are now used on top of the barbecue grill. Chris uses them next door.  The food cooks well with the lovely lines on that come through from the grill and no need for a messy clean up.  You just wash the sheet or sheets out with hot water and put it away until the next time.  We were amazed when we saw him using them and for sure the worst part of any barbecue is the clean up.  Now it will be made so easy we might use ours much more than we do.  


Well now she is home tomorrow I will have her pick her first apple off our tree, pick her first strawberry and cut green beans for tea. I want her to learn to enjoy the garden and I believe if there are nice things growing it just might encourage her more.  Colin is still to make me my raised bed to grow more but I have done ok.  When the bed is in I will ask her to help me to choose which fruits or veg we plant.  She loves her veg so we should get a good variety.

Right all for now, I made a curry for tea yesterday, yes even in the blistering heat and now we are taking it down to our friends house and will all enjoy it whilst sitting in his beautiful garden. As we are still without a lawn we cannot do that here yet.  I am so hungry as I have put myself on a diet since hearing my pressures have risen, maybe that might be the reason, who knows. Anyway we have also just been out to buy a water butt which seems to fascinate Izzy, I do not quite know why and that needs to be fitted today. We also purchased lots of crocus bulbs to plant as it is a perfect time once the top soil has been laid and she can do all the bending down to plant! Slave labour for sure.  Just maybe I might buy her an LOL if she does well.  

Take care, enjoy the sunshine and I will speak again after my appointment at Sheffield and let you know about new trials and my pressures etc.  

Warm love to all.

Carole xxx