Thursday, 23 February 2017

Hospital follow up ..... denervation

Second time of trying. I wrote this blog, we published it, ten people read it and then came the comments it had gone!!!   Despair!!!!!!!!!  So here I go again.  It is important for me to get this out today as I know there is somebody waiting to hear about how my visit to the Royal Hallamshire went.  

We arrived at the hospital early as we prefer to be early rather than risk being a minute late.  A cup of coffee was in order so we went to the cafe just to waste a little time.  Eager though to get down to the MRI scan thinking I would be early for my 9.00 appointment but I could begin to get ready we arrived at 8.35.  Our greeting was " you are late, did the wind hold you up"?  This was said with a smile in the voice of the radiologist who spoke it.  I was quick to point out that we were in fact early as my appointment was 9.00.  She was quick to come back with the news that no, indeed my appointment was for 8.30.  Anyway no worries really as I am well versed in the art of MRIs having had too numerous to mention  so I was quickly ready to go and slid into the machine.  It hardly seemed any time at all before this was reversed and I was slid back out again all finished, or so I believed.  When I smiled and said "all done then" he smiled and said no, not with this research they now need you to turn over and lay on your front and we do it all again.  Was it April the first, no so I thought well this is a first but was happy to comply when he burst out laughing and I knew I had been had!!!!

Little things like this are what make our hospital visits a pleasurable rather than a painful scary experience, the friendliness of everyone we come into contact with,

Back up onto O ward and we had barely time to sit before we were greeted by Katy, my research nurse, and Alex, my specialist doctor who performed the denervation.  With hugs all around  we retreated into the back of the offices to discuss how I was feeling and the ecg, blood tests, six minute walk test, stats etc.  So it began.

Alex asked me first of all how I was feeling and I was delighted to say that the last few days I felt I was a little better, though slight any upward feeling of being better is good.  I feel that my breathing is slightly better and that my breath now goes "further in" than it has been doing of late.  My ph family knows exactly what I mean by this and some of the distress I had been feeling the last few months seem to have taken a slight turn of the better.  My cough is still much better, something that really pleases Colin.

I had always noticed that by afternoon and all throughout the evening and the night when I had to stand it was as if I was an old lady.  I may begin the day feeling quite steady on my legs but never later into the day,  however I had noticed that this had improved greatly the last ten days or so.  I had never voiced it before now as it seemed such an odd thing to remark on.  I have also found myself able to stay up for a bit longer, watching a film in the evening with Colin instead of going to bed very very early.  

I attend an exercise class preferring to try to do something rathe than sit and be the blob in the chair.  These are gentle exercises called Better Living classes but I had not competed even one of the 7 classes I had attended in this session.  Before denervation I was just too tired, too out of breath and after the denervation, well my legs had been so rubbery when I attempted to walk I was so sure that this had not helped me at all, rather made me worse.

This week was to prove the turning point as I completed all the exercise class!!!!  Now I do not do the weights when the time is taken up doing them but I do do all the moves so when the short period is put aside for the weights I just go through all the motions, I also do not swing my arms above my head but instead moderate the moves to temper my condition.  Everyone in the class noted how well I did and I could not wait to get home to tell Colin.  I decided to call in at the supermarket to pick up one or two bits and ended up doing a reasonable sized shop. very pleasing indeed.  All these things Alex noted and wrote down and was pleased to see that there was a little progress.  Of course we needed the all round figures of the further testings and these were about to begin.

Bloods taken and blood pressures etc taken and away we went for the six minute walk test.  I was determined to just walk at my normal speed, I was not going to try to run and so away I went, nice and steady but with an easy gait and before it seemed two minutes was up I was told to stop, my six minutes had been competed.  My stats when I ended were 98 oxygen room air and around 92 heart rate.  Happy with that.  My other pressures were fine.  My breathing was not laboured at all so a very satisfactory result with those tests.  ECG was performed and Alex declared it to be no change to the last one.  This in itself made me happy as no change meant no deterioration from the last one, always a result I think.  I always prefer to feel positive about these results and be upbeat about them rather than feeling all sorry for myself.  Anyway these results WERE all good so I was very pleased, as indeed was Alex.  

I told Alex about my ph friend who was abut to be number 10.  Well not anymore as things have moved on since then and more have been done, one being done in Vienna last week.  I believe my friend will be number 13 up to date when he gets his done in March.  So we are moving on and more people are happy to try this newly developed procedure.  We were never given any promises the it would help, just a hope as indeed all research is but I truly hope it makes a difference.  We talked about this and that re my health and Alex was very happy, particularly as my walk test showed that I had walked 50 metres more than before denervation, result I think.  

I know ph is progressive, i know it is highly unlikely that I will ever again enjoy the walks of up to 11 miles daily I so enjoyed less than two years ago, I think those days are behind me now, unless of course a cure is found  but I am sill determined not to be a couch potato and do all in my power to keep on top of things.

I left O ward feeling happy and I know Alex and the team were happy too.  I headed off to M ward where I wanted to see two of my ph friends.  Alas I only managed to meet up with one of them, the delightful Christine Fowlie and I am pleased to report that she is feeling much better and is hoping to be going home tomorrow.  I hope there are many ginger biscuit days now for Christine.  


I applied for and was sent a letter telling me I  had been successful in getting two tickets to Wimbledon on the Saturday before it closed on the Sunday.  I was all ready to take up the offer when I read the small print.  Yes our tickets were for Court 1 but alas there was a problem with the roof and on the day of the match there would be no roof on to shelter from too much sun or rain.  I do not do well sitting in the sun, even with a hat on and so decided we will let these go and apply again next year in the hope the roof has been fixed.  

Quiet week

Izzy and the family are skiing in the French alps this week.  As Izzy has progressed she has now been given her own ski pass and I am interested to see how she got on, after all what goes up must come down!!!!  This child is not noted for loving exercise and yet she seems to have taken to skiing well so we are very proud of her.  Anyway this bodes well for all the family as with two adults skiing mad she really needs to be able to do this.  So looking forward to her face timing us again. 

Well that is all for now.  Am back at Sheffield in three months time when we shall see how I am doing.  Alex will ring me when he has had time to take measurements etc from my MRI and tell me how they are looking.  

In the meantime I send you all my warmest love and as usual a huge thank you for the likes, for the shares and for reading them.  I get an average now of 400 views which is good as I do not do twitter or all the other media pages so just from ph I think this is a good result as it shows people are interested and people care and want to be encouraging. 

Take care each and everyone

Carole xxx   

Wednesday, 15 February 2017

Three weeks denervation

Sadly still not a lot to report.  I take heart in remembering that another ph friend took a few weeks to pick up.  I spoke to Alex a few days ago who wanted to know how I was getting on.  He was  surprised that I was not feeling a little bit better but said he is still quietly optimistic.  He did say that the week before when my heart was flopping around all over the place that I should have gone to my local A & E as they could have done something to get my heart back into its natural rhythm.  I did know this and was considering it but as I had a friend who had died having this done I naturally have a reluctance about it. 

I THINK  there may be slight changes for the better.  Definitely that silly cough we all suffer from is not nearly as bad.  This is something I had not given a thought to as we with ph just live with it all the time until we just don't really notice it.  Once Colin pointed it out to me, as did a friend, I was quite shocked really and yes, of course, pleased.  My breathing is still not the best but hey, I do have ph and this was never going to cure us of ph at all. just hopefully reduce some pressures. My stats remain around the same generally at around 100/79 with a heart rate of around 89, I wish I could slow down my heart rate a little lower. This is the rate when I am just sitting but of course it raises up to around 115 when I stand to say get a glass of water,  again not too bad but it takes quite a while for it to drop once I reach this stage.  If I have done anything energetic it raises to around 130 but it does drop swiftly to the  115 stage again. where it remains for quite a long time.  This is when I have tried to do light exercises.  

I do go out, but do not feel I dare go out on my own just yet as when my battery drains it does so totally that I can't even get into bed myself and need help, even to remove my own socks.  This has not happened for the past three days though so again are we on the up, who knows.  I go for my MRI and check up one day next week and will also see Alex so that will be very interesting.  If they are asking for an MRI after just a month then I presume that they hope to see a change, we shall see.  

I find that when I stand still for any length of time then I go grey and need a hand to walk back to the car but his is nothing new either, I was hoping to get rid of this.  

If it does not work was it worth it?  Heck yes it was!!!!!!  I still believe I will improve but if I do not then anything going on in my body will be measured, looked at and it all goes down into research, of course I am pleased I did it.

Colin also reminds me that unlike some people who have immediate responses to drugs and procedures  I do not with one exception.  He reminded me that when I was first diagnosed and was thankfully admitted to Royal Hallamshire  I could not walk more than a few steps.   Colin had been showering me and dressing me as I could not do this for the week before I arrived at the hospital. When I was admitted I was told bed rest and there I stayed for a week, of course going for tests etc but pushed in wheelchairs or beds. Given the iloprost infusions immediately I arrived, well almost, I was shocked, pleasantly when after the said week in bed I was able to get up and walk around!!!!!  This was a great day on my ph journey and though I have never said the pump is a lovely thing to deal with I have always thanked god and my specialists for it as without this I would not be in the place I am in now.

Once my heart settled and I went onto oral meds we again realised it took two to three months for me to react to the new regime so is this going to go down the same road?  We hope so.  

There has only been one time and one drug that I reacted to swiftly apart from the iloprost and that was too a detriment.  It was a drug I trailed that had no name, it was just numbers.  More or less as soon as I began I became very poorly and had no energy at all.  This was so bad that even when I went to my clinic appointments my research nurse asked that I lay on the bed for all of the visit.  I tried, really I did to continue with it and managed three months before my ph doctor pulled me off it.  Oh the joy!!!!!  Since then I have been told that this drug has been discontinued for people with ph, the trial ended way before it was initially hoped to end and some people have said to me that they too suffered the same problems on this drug.

So there we go, I do take time, or my body takes time to get on with new things and so all we do is wait and hope for a different day.  I have noticed I am staying up a little later than I did too, I would often have been in bed in the afternoon but this is not happening much now so onwards and upwards.

I have never been one to moan and groan about my ph preferring to just get on with it as moaning wont get me anywhere.  I feel this philosophy of not feeling sorry for myself and my lot has helped me on this ph journey.  I hope it helps me now I have had the denervation and I see an improvement for myself and the others coming after me.  

The person about to be number 10 { I will not mention names here as I have not asked if I may} has promised me that when in theatre he/she will shout to the staff that number 8 says hello!!  This should raise a smile I hope.  

House news

We went back to one of the kitchen places to check over the design they had done for us and it was rubbish!!!  I know we all like our own way of doing things and I hate huge cupboards etc, preferring to have everything low level if it can be done.  Ours is a large kitchen and once we configured it correctly we had everything we need and no eye level units.  This was really thanks to Colin rather than the designer but she did have the 3D so we could keep changing things around to get the design that works for us. Not sure if we are going with this company but we need three quotes so at the moment it is something we need to do.

Colin is going to our land to begin to clear some of the huge edges etc as soon as his chain saw is back from its service.  I am looking forward to this as it will seem that at last we are moving in the right direction.

Ray of sunshine

We are having Izzy tonight, or as it will be when you read this post, last night.  I cannot post it until tomorrow as there is a secret going on for Valentines day and the other party who I know reads my blogs will see it and the cat will be out of the bag!!  So looking forward to seeing her and for the time we will have telling stories and cuddling.  Her favourite chicken dinner with all the trimmings and plenty of broccoli and carrots and other veggies will be cooked for her.  

Being spoiled

I have received many many cards to wish me better that I have been quite overwhelmed, plus the flowers!!!  I had them in every room and three vases in one room at one time.  People are so kind and I am also enjoying the lovely Molten Brown bathing products that were given to me before my procedure, still some left so I am smelling gorgeous!!   It is nice that we can all do nice things for each other to boost our spirits. 

Follow on

All of this was yesterdays news so I will close with this.  Izzy has decided to become a vegetarian but will eat chicken, tuna and an occasional chicken nugget meal!!  I cannot see this lasting very long as she has school lunches and they will not be in a position to change her meals around.  This has come about after watching programmes on the tv called Planet Earth, she hates to see animals killed and eaten. We had a great night and I took many pictures.  

She woke up being her usual happy smiley little girl and went off to school in a joyous mood.  She had read her book to me the previous evening and we laughed as it was about a boy named Kipper and his antics.  I love to see her enjoying her schoolwork.

I just went into town to buy more oranges, { I eat so many } and could not park outside this particular store as no spaces.  I went up the next road where I managed to park but was worried about walking back to the car with my heavy oranges and nectarines.  I was pleasantly surprised to see that I did it with barely a worry and was pleased that my breathing quickly returned to normal once I sat down.  Dare I believe an upward trend, a lowering of my pressures. ?  we shall see. 

So I leave you to get on with your day  Not sure what the day holds for me but I have told Izzy that as it is such gorgeous weather  I may go and collect her from school on my mobility scooter, such a treat for her!!  Have a lovely day, enjoy  spring like temperatures we are experiencing and stay well.

Thank you again and again for reading my blog, for bothering to click the like button, this means more than you know and for any comments.

Warm love to you all

Carole xxx

Sunday, 5 February 2017

11 days post Denervation

Here I am after 11 days post denervation with nothing much to report.  I had hoped to feel some improvement by now but I bear in mind that Alex told me it will take time IF indeed anything changes at all.  I will be talking to the team on Wednesday to report how I have got on since I had this procedure.

I had an absolutely shocking day last Wednesday.  I knew as soon as I got out of bad that it would not be the best, certainly if not a wafer biscuit day then it would be a mix between wafer and rich tea.  I was very unsteady on my feet and there were a few times when I was standing that I felt I was about to fall forward.  My heart and blood pressure were all over the place falling as low as 84 over 47 with a heart rate of almost 100 beats per minute.  This same heart rate was very erratic indeed jumping around in my chest wall like a ping pong ball on a table, flopping around and missing beats.  I hated this feeling.  

As the day wore on I decided that I was not going to move from my bed, even to get a drink.  I was taken well care of and to be honest was not even bored as I was feeling too bad to even feel this.  Colin had a previous engagement at a friends house and was going to cancel but as we with ph know what good does it do to keep cancelling engagement after engagement, nothing would get done.  He was only six minutes away in the car and I promised to ring and ask him to come home if I wanted him to.  A couple of times he rang me to ask if he should return and I said no but on the third ring I said yes, he should,  as I was thinking of heading off to my A & E department though very reluctantly.  Minutes later he was home and we discussed what to do.  I hate going to hospital and hate spending tax payers money in the A & E but sometimes needs must.  However I also know how ph works and I know that we can change from minute to minute and it would be typical that  I would go only to have a calm heart with a clear and steady heart beat!  

We decided to wait until after midnight and if no improvement then we would go, it is only two minutes away in the car.  The reason for this is simple.  If we have had a night in hospital with our condition (other than elective as my denervation was} then we are punished when taking out holiday insurance.  The price hike can be enormous and as we are hoping to go abroad again this year I did not wish for this.  Had we arrived at even one minute to midnight and left one minute after midnight  then we fall into this category, on paper we had spent a night in hospital as an emergency patient.   Obviously if I was having a heart attack then we would have gone immediately.  I just kept hoping for an improvement.  Midnight came and no change but I sill wanted to hang about.  Eventually we both fell into a light sleep with many periods of wakefulness but again a new day emerged, my heart had settled somewhat and my blood pressure had risen a little to a 92 over 54, certainly more acceptable.  The thing that is so awful about pulmonary hypertension is that it is so unpredictable and without doubt this is annoying when we cancel so many events.

Most of us with ph can feel our heart beats easily.  I find a simple way to monitor mine is to clasp my hands intertwining my fingers    By doing this I feel each and every beat and I also of course then feel if they are inconsistent. I  am happy to report that today the beat is a nice and steady one,  hope this continues.  I know our blood pressure machines also show how many beats per minute as do our oxygen monitors but they do not show the irregularities that my hand clasping does,  simple but effective.  

Strangely enough though through all this I did not get stressed,  unlike the day before my denervation when I brushed my teeth with a steroid cream!  Don't try it, not at all nice!! 

Friday we decided to go to a kitchen showroom to see about designs for the new house.  Though we are a long way off yet it is better to know what we want in it now.  At this stage we can move a window here, shift a wall or a door there but once they are built we will be more limited.  I was getting stressed at seeing Colin moving bits of paper representative of cookers and freezers etc and just wanted to get it looked at by a professional.  Now do not  get me wrong Colin is great at this, he has a "seeing eye" to where things will look best and is very good with a scale ruler but all it does to me who does not have this vision is send my stress levels through the roof.  So off we went.

I did not do too badly for the first hour and was loving looking at kitchens and appliances but without warning it began, the sliding of my feet over the floor as I had not got the strength to lift them and the floppy feeling in my heart again so I needed to sit down.  I had hoped it would go after a few minutes but no, it was home again to bed but this time with the lovely visions of what was to come instead of pieces of paper on a scale map.  

Saturday we had our darling Izzy for the day and this is always a pleasure.  She is rarely without a smile and this day was no different.  Colin had to go down to our land to meet up with tree surgeons so it was just the two of us.  Of course at six years old she dresses and washes herself but it is her honesty about this that always amazes me.  I know she must brush her teeth for two minutes each time and at our home she does not have the toothbrush she does at her own home where it switches off after two minutes.  Instead we have a timer and in she went to get ready.  She came out with the timer in her hand and was bushing her teeth, she could so easily have just come out of the bathroom and said "I did it" but she did'nt, she wanted me to see she had brushed for the correct two minutes needed.    There was lots of water splashed around the basin and the floor but she got some paper towels and mopped it all up so "I would not slip on it".  Once she was ready her grandad was home and then it was backpacks sorted with flasks of hot chocolate, a biscuit etc, binoculars, bird book and pencils and away to our local Nature Reserve to see if more birds could be ticked off in her book.  

Things did not go to plan as when they arrived they were told the bridge was out of action so the detour needed to walk was about one and a half miles each way.  Not being deterred with backpack on her back she walked around by the river until they reached the Hide.   She was so excited to tick off in her book and Orange Bullfinch so a very happy little girl returned home giggling as she told me how her day had been and laughing as she said how her grandad had tripped over a root and lost half of his crisps!!!!  

Today I have not had the time to assess how my day will be.  I am not getting despondent though as I know well from a friend who had the same procedure it took a while to feel any improvement at all.  After all our lungs have been damaged, we need time to heal.  We shall see in time if it helps but improvement or not I will never regret trying, I will not give in to this disease though it may knock me down a few times.  I always seem to find the strength to stay and fight another day and  will continue to do so.

On the Pulmonary Arterial Hypertension support group page we only had two admins for the group, one here in the UK and one in USA.  Though this worked it did make me think about the "what if" aspect of hospital stays etc and then only one to cope with all the admin requited.  Paul and I decided we needed another two as there is strength in numbers.  I knew of an ideal candidate here in the UK,  Parris Kelvey as she is always wanting to help people and I knew she would be great in the roll of admin.  I asked her and she happily accepted so we now have three.  If there is anybody out there away from the time zone here in the UK who would like to take up the other admin roll we have then please message either myself or Paul.  

A very short blog I know but as I am still recovering we are not doing much at all.  I still felt you needed an update though as I know you will be wondering and the longer times go with no news then we can always fear the news is bad.  This is not bad news, just a "no news to report" blog. 

Thank you again for taking the time to read, for actually  bothering to click the like button and for the comments.  

Go well each and every one of you and I send you much love.

Carole xxx

Friday, 27 January 2017

I am Home

Denervation news

What a day it was!!!!!  It began at 8.00 as I was wheeled upstairs to get into  my gown and the very lovely (not) hospital nickers! I wasn't even given time to say goodbye to Colin, a chair appeared, I was told to get on it and then I was whisked away with the speed of lightning.   As I was sitting just waiting in my gown I must admit to feeling a little nervous, though I never at any stage wanted to back out of the procedure as we had talked about it all again the day before with Alex and we put our trust in him totally.  

Alex came to see me and asked how I was feeling, the answer was excited as I so wanted to see if this was a game changer in the world of people living with pulmonary arterial hypertension.  He was joined by another person and they walked me into the theatre.  So there I was, I had the main man, Alex and the main event was to begin.  I had been told the theatre would be full and so it was.  I was introduced to all of them but I admitted that I would not remember their names,  It was a pleasure to see Faith was in the theatre too as well as Katy who was the research co-ordinator and the many many more.  Alex told me not to get worried about there being so many in but as  have said before as an ex member of my local theatre I loved an audience.  This made them laugh and I immediately felt I was in good hands.  

Geting all ready took a long time.  Obviously there was all the sheet covering etc but the biggy was getting the sheath and all that was necessary into my neck.  The machine being used for this procedure was designed and made in Israel which is why there were a few people from there in the room as they were doing part of all this,  the burning part, which was done by a machine behind me by pressing buttons.  but it was Alex was the one by my side and moving the catheters into the correct position.  This does not sound much but honestly a tiny slip and it could have been disaster for me so it was very time consuming.  There was an awful lot of machines taking readings and a lot of talk going backwards and forwards as to what the readings were.  Most of this went over my head as I just lay there and thought about what was about to happen.  A Professor Jud lifted the cover of the sheet to say hi but I couldn't see him.  He is a very well respected man and I hoped to at least see his face afterwards.  

A hand appeared under the sheet and Katy held a mask in place and I was then breathing something, I don't know what but nitro?? comes to mind, may be totally wrong and again another reading was made.  At last we were about to begin, Alex squeezed my shoulder and told me to prepare for the first one.  Did it hurt, in truth yes it did, the burn began slowly and built up to a crescendo not just where the burn was but all over both lungs and up into my throat.  I know I groaned, did'nt mean to but I could not help it.  Alex asked me if I was ok and I said yes.  I knew I had to do this, had to give it my best shot.  I was in a very privileged position being the 8th person in the world to be offered this and I  knew there was no way I was backing out.  I also knew that two of my Facebook friends had had it done, one I knew personally so this helped, I had to do this.    

Before it began Alex told me until he got into my lungs he could not say how many he could do but he did say he had a plan.  Again I trusted him.  So on it went, readings being taken all the time and everyone doing the job they were in the room to do.  Each and every time a burn was made (actually we were told not to call it a burn as what they were doing was damaging the nerve) I was given huge doses of heparin to prevent blood clots forming.  Through all of this I needed to remain still.  I had a great team and all worked together to achieve a hopeful result, even taking my socks off as my feet got too hot!  

The sheath placed in my neck to allow all this to take place was a third bigger than the one used for our right heart catheters.  In truth it felt like I had a cucumber stick down my neck.  It felt weird.  The TIVUS catheter was placed  in the main, right and left pulmonary arteries and ultrasound energy was used to damage the nerves.  I was told that the number of treatments sites in the pulmonary arteries would depend upon each patients anatomy but the number of treatment sites in the right and main pulmonary arteries should be between 2 and 8 and no more than two in the left pulmonary artery.  In total I had 7 done so I am truly hoping for a difference in my levels.  I overheard them saying that my levels would not be tested until 4 months so this is the milestone I am working towards now.  I know one of the catheters failed halfway through so this had to be taken out and removed.  I do remember Alex telling the guys from Israel he would give it back to them, I suppose to see why it had failed.  

When it was all finished, four hours in total I saw the trolley coming in to take me to recovery.  I asked if I would now be doing the bum shuffle to get onto it and was told in no uncertain terms that I was doing nothing, I was being chauffeured everywhere today and a pat slide was used to transfer me onto the said trolley.  Once on it they lifted up the back so I could sit up and oh the joy of this, I groaned with pleasure this time as four hours in one position is very trying.  Before I left the theatre I called out a big thank you to each and everyone of them who had taken part, I knew I owed them a huge debt.  Smiles were all around me and I felt such relief.  I heard the banter that was going on now  it all was over, I know Alex came into some stick from the mess he made around the theatre bed, I think it would be blood as he had to do so much work in my artery.  I felt truly happy at his stage.

I was pushed around to recovery where I expected to stay for around half an hour.  How wrong was I.  I could see the board opposite me and I was acute care.  I needed a one to one care and again how blessed was I.  Danny who had been in the theatre came and asked if he could take me on as he had been there all the time and wanted to see it through.  Now Danny was a star.  He brought me food, I tried but could not eat it but talked to me and made me take my mind off things.  I told him I was worried abut Colin as I knew he would be in a panic as I had been away for so long.  Without ado he rang the ward and got Colin on the phone.  I immediately burst into tears and told him I had been so worried about him as I knew he would be wondering where I was.  Danny pulled the curtain around whilst I talked to Colin and then began 4 hours of working on my bloods before the sheath could come out. 

Alex came to see me in recovery as too did Professor  Jud so I actually saw his face.  They were both happy about how it went.  I know Alex is quietly optimistic as he has seen all the progress of the others.  One guy in Belgium has even been taken off his ph meds.  

Blood had to be taken about every 20 minutes and put onto a machine to test its clotting ability.  This blood was taken from my neck by Danny and each time we hoped it would reach the acceptable level of 180.  Well it just would not go down to this magic number.  Once we thought we were very near only for the next lot of bloods drawn showed it had actually risen by about another 50!  The reason was the huge doses of heparin given through the procedure that kept on releasing itself into my body. It took four hours to get the number needed.  Eventually the number needed was set  to go and Danny  expertly removed the sheath from my neck, oh the relief.

Another step reached and we were able to go down to the ward where Colin had sat for over 8 hours!!!!  He had been kept informed from time to time being told I was still in theatre but all was well etc.  Alex had got down to talk to him once I was out and in recovery, as too did Katy.  Once again I was not allowed to bum shuffle onto my bed, another pat slide was used.  Danny bless him told Colin he had never seen such a brave person in theatre as me, he said he did not think he could have done it being awake and having to keep still for four hours.  I gave him a big hug because he was such a big part of keeping me happy and relieved when in recovery.  

Alex came to see us and told me he was pleased with how well it had gone.  I was given an ecg and my pressures were taken.  Alex was given these and was happy.  He told me he would be back in the morning, he would be sleeping not far away if he was needed but did not see that there would be a problem.  

I knew I could not get out of bed and was busting for a wee.  A bed pan was brought but no way could I use it, try though I did.  Nothing for it but to just try and hang on another two hours.  Eventually when I knew I could get up I did so with the help of Colin, I was wobbly.  back to bed and Colin left to go to the hotel.  There was a lovely lady opposite me and we had lots to say.  She said she knew that something special was going on when she heard people talking to Colin so was longing to find out.  We talked about it and she was hoping to friend me of Facebook so she could see my progress.  Unfortunately the wifi was not very good so it did not come through.

In the middle of the night at around 1.00 an elderly lady was admitted to the ward, she was 92.  She was confused and asked to be moved upstairs into a corridor,  The nurse taking care of her was very patient in explaining to her why she was in hospital and why she could not go home.  When the nurse left the lady in an undertone said "what a load of b....cks! "  I was so shocked I laughed out loud.  it was certainly not the language I associated with somebody coming up for 100 years old!  So my sleep was not the best but I hoped to be feeling quite well in the morning.

I knew Alex was coming at around 7.00 so I got up at 5.30 in the hope of taking a shower and settling down before he arrived as I knew another ecg was to be taken.  I was shocked to the core when I found  that I could barely stand let alone take a shower.  My legs were like a baby just learning to walk.  I washed as well as I could, taking great care to hold on with the other hand to any appliance that was near.  I went back to bed gripping chairs, beds and walls along the way.  When Alex arrived I  told him how I felt and he assured me that it was normal, that it was huge what had been done to my body so again I felt reassured and again the ecg done whilst he was there was acceptable.  

Colin arrived and could see immediately that I was not too well but I told him that I also had not been allowed my tablets by the staff nurse so  was over two hours late for them.  Eventually I got them 2 and a half hours late and this was because Faith, the research nurse got them for me and watched whilst I took them.  The staff nurse was not happy about this at all as she said she need to see me take them.

I got up and she asked if I was ok, it was obvious by my face that I was not feeling well.  I told her that as I was almost 3 hours late for my tablets by the time I took them it would be affecting my ph.  Anyway the good thing was my driver home was Dean, my usual taxi driver when doing research.  He was well known by the staff and he made a joke that he always took me to appointments as nobody else would cos I was usually drunk by this time!  He took the bags whilst Colin helped me get to the door and into the taxi.  I was shocked that I was as weak as a kitten.  When I got home it was straight to bed for me and a very restless time but I have woken to a new day and feel so much better than yesterday.  

I promised Alex that I would take my time to come round from all of this and I promised Colin too.  I am very badly bruised on my neck and a nick larger than the normal one when we have a right heart Cath but these will disappear in time.  Now it is onwards and upwards.  

It was so lovely to read all of your good wishes for what was to happen and I promised to write my blog as soon as I was able, so here it is.  If you are offered this procedure then I would not hesitate to say go ahead what do you have to lose.

Go well everyone, I was bolstered by knowing that you are all rooting for me, it meant so much.

tons of love to you all


Thursday, 19 January 2017

Cursing Not Allowed

Good morning,  This blog is a little late but better late than never!  

We had to let a member of the pah group go this morning due to her excessive bad language and the way she spoke to the people on the group trying to help her.  All her messages back were abusive to a degree I  have never seen on Facebook before.  She had been asked to temper her language before as we  hate to ask those those that need our help to leave.  In fact as far as I am aware she is the only one we have blocked from here.  I apologise to all those that were shocked and offended by her.  We got to her as soon as we could once we saw the problems she was causing.  My thanks go to those that alerted us and be assured  that she cannot ever come back on this page.  It may be she can see you and talk to you on another site but I cannot do anything about that, I would just advise you to block her totally. 

Some questions were asked as to why we allowed her on here in the first place.  Well the reason was that without knowing her we could never have known that she would treat us all so badly.  She said she had ph, she told us her meds, we had  no reason to believe she would treat us so badly.  I myself had blocked her before as I hated the language but of course she still came up on the admin side.  This time she went too far.  I hope this was a satisfactory conclusion for you all and that we never  again see the likes of such abusive derogatory comments on this site again.  It is for helping, advising and giving support.  This behaviour cannot be tolerated so she has paid the price. 

Dinner off

We had planned to go to dinner with some of my ph friends in Hebden Bridge a couple of weeks ago. I was  so looking forward to this but watched Facebook with dread as I could read the posts of the ones  that were coming and could see that one by one the dreaded illness that is so rife here at the moment hit them.  The cough and cold that does not sound much has sort of mutated to a bug that really strikes down even the fittest in such a way that for a while it renders them helpless.  With our immune systems already badly compromised it leaves us just too poorly to even think about getting out of bed.  As the morning progressed  my messages or phone calls became another and another person ringing to cancel.  In the end there was only myself and Catherine Makin fit to make the journey.  Sadly we decided we would call it a day and make another arrangement in the spring when hopefully we are all free from these bugs.  So once again ph had the final word and something  so looked forward was not to be. 

Exercise class

I might have ipah but that does not mean thatI am happy to sit around on my good days, those days are left for the wafer biscuit days.  No my ginger biscuit days are meant to try to do all that I can to try to maintain some form of normality.  With this in mind I joined another exercise class for people with breathing problems. Again it is hard to get across to the teachers that my heart and lungs do  not work as the "normal persons" and that I must temper my exercise to my own issues with my breathing.  Fortunately I found my teacher to be willing to listen and we discussed a regime that hopefully I could manage. 

The first week went fine, I turned up and did all that everyone else did.  Oh I thought this would be a doddle and looked forward to the next class.  Sadly this one did no go so well and I had to sit down as I felt very sick and clammy.  I really must try not to push myself so hard I know but it is difficult when you see people around you who look like they would not have the strength or the energy to be able to do the exercises who just nailed it!  I felt gutted and left early.  Will try again on Monday.

Fun fun all the way

Well that is if you have children or grandchildren or even access to others children.  I saw a post on Facebook that showed animals etc made out of vegetables for children.  They looked such fun that I decided Izzy and I would make them.  I had one very excited little girl sit down at the table wearing her chefs apron and hat looking at the array of food in front of her.  Now Izzy is a tuna lover so I used a can of tuna which I mixed with mayo very well to a bit of a slushy mush.  For fruit and veggies I used celery to make the body of the animal.  Fill with tuna and then build your own snail, Loch Ness monster etc.  She made an aeroplane,  The cucumber filled tuna was the plane with blueberries on top as the people in the plane.  The cockpit was a grape and the wings were made of cucumber,  She took great delight in eating first the pilot and then the people and then the wings and finally the body of the plane.  On then to make a snail etc.  All the time we laughed and had such fun.  I cant wait to do his again with her and a lovely memory was made.  

Wearing the watch

This watch monitors heart rate, sleep pattern etc.  All the things that are needed for the study I am taking part in, the denervation.  Yes it is ugly being big and bulky but I do not have to recharge it as the charge lasts for two weeks.  All data is then downloaded to the hospital computers.

I received a letter from the hospital with the word URGENT on the front in big bold letters and written in red.  I opened it and had a shock!  This letter advised me that I was to be admitted onto the cardiology ward on the day of the 25th and must make sure that someone was on hand to take me home the same day!!!!!  What!!!!!!  oh and I  also needed to be on the ward at 7,15. This meant getting up at 4,30 for a shower, hair etc and then setting off for the drive over to the hospital, I would be exhausted.  Then the MRI and then the denervation.  The fact also that Alex who is doing the denervation had promised he would be around for the first 24 hours went out of the window,  I panicked and rang Alex who was quick to reassure me that it was wrong.  All was as what had  been promised,  A hotel had been arranged for the night of the 24th for me and the 24th and 25th for Colin so that he would be close by, whilst I spent the night of the denervation on a cardiology ward.  I will arrive on the 24th, have bloods and the MRI and then be free to do whatever we want until an early appointment of the 25th as the theatre is booked for an early morning start.  Alex will stay overnight to monitor me and if all is well I will be allowed home on the 26th.  I am so excited to see if it helps and if this is the way forward for others like me who have exhausted all other forms of treatment.  

Plans going well

Quite nail biting to see if there have been objections.  The highways department have passed them, they just stated things about the water pipes etc so nothing onerous on their part.  We keep checking to see if there are more but  none so far and in fairness as it already had outline panning permission we do not really expect any.  We should get the final say mid February. I have meanwhile advertised on Streetlife, that we have many many plants and hedges free should anyone wish to take them.  I have had two enquiries so hopefully some of them will be of benefit to somebody. I hate the thought of all of these just being destroyed.  The two trees that will come down will provide much wood for such a long time. I am already looking at furniture!!!  Silly as it is a long way off yet.  Kitchens next!!!!!

I must leave now as a gentleman is coming to the land to see if he wants any of the hedges etc.  I will write again when I return from Sheffield hospital and tell you how it went. 

Warm love to you all, thank you once again for reading, for the likes and shares and most of all the moments, i so love reading them.

Take care

Carole. XXX

Saturday, 7 January 2017

Good news on the denervation for my friend

Going the right way 

Got an update from Jo, she had the denervation about five weeks ago.  She showed us a message that was sent to her after her four week follow up.  All tests results were showing a better, though tiny improvement!  super excited for her and myself and of course Barbara Cherry who was the first to volunteer for it.   

The blossoming bruises.

Quite why I should have gone to bed almost {never totally} bruise free and wake up to many many bruises on both legs is a mystery.  It is like mushrooms, you look under the trees and there are one, look again in the morning and glory be, many have poked their heads above the ground nestling in clusters. So it is with me, evening routine done, legs moisturised and all is well, wake to find  many many of them.  I try to be careful as I know how quickly and badly I do bruise, I never carry one of those metal baskets for instance at supermarkets.  They bruise my legs dreadfully when they get knocked against me.  So here I am once again with what must be the worst looking legs ever for me and seeing no reason for it.  I hate ph cos even apart from all the terrible problems with breathing, lack of energy etc these seemingly small, inconsequential things come with it too.  Fortunately it is winter so thick jeans are generally the norm and so they are seen by nobody else but still ...................

Local man shot dead

Recently in the news was the story of a local man shot dead by the police.  Of course as is the norm his friends held a vigil for him and said he was an angel, a lovely man, a kind man and oh so many other lovely things about him. It soon transpired that the police were to blame for the killing.  {well in truth they did kill him} but this guy was responsible for so many major crimes and when he was shot he DID have a gun in his car.  He had previously been accused of attempted murder.  He was a known "big guy" in the world of drug dealing and flew drones over prisons and dropped in the stash of drugs for the inmates.  Lovely man huh.  His friends who were travelling in convoy with him were also in very high end cars.  I do not  know yet if they stole cars to order but whatever he was certainly no angel.  I did read that he bought posh cars in order to launder his dirty money. He was 28 and was seen bragging sitting on the bonnet of his lamborgini car, plus he had others.  He lived in a very modest house and yet he had 10 surveillance cameras around the walls.  I doubt very much if this guy really was a saint and yet there will now be a huge probe into his death.  I just bet the policeman who was doing his duty will come in for a lot of criticism and hatred but for me I just thought that I hoped it would be a lesson to others, that we are cracking down and that as this is seen people think twice before carrying out such atrocities.  I doubt it.  For every one taken down there will be another one to take his place.

Of course his family and friends said he was a saint but go a little further and man many people said they were terrified of him.

We went into Leeds yesterday and had to drive past the end of the slip road where this man lost his life.  There were many many flowers laid on the side of the verge.  That section of the motorway had to be closed off whist the vigil for this him was taking place.  What are we coming to in this world. Of course the race card will be played, isn't it always, will be interesting to see how this story goes.


We needed to go to Leeds to collect something so off we went and I did not feel too bad.  I decided to look for a few bits and pieces and actually did find a lovely ice blue jumper and a very lovely tunic thingy from Monsoon.  I still felt ok ish and we decided to go for a pasta lunch at one of our favourite places to eat in Leeds.  It wasn't long after that my heart, {having to work harder since I ate} decided it was not happy at all.  My face flushed in weird blotches and my legs were jelly.  The tiredness that overwhelmed me was huge so it was back to the car and home, via a slight diversion.

We needed to call to see about the alloys on our wheels.  Two were damaged when a kerb had the cheek to jump into the road and scrape two of them!!!!   I wont say who was driving when this happened but the damage was pretty bad.  The cost for this  little episode is going to be £200!!!!!!  It makes me feel as if we should be driving in the middle of the road.  These wheels stick out beyond the tyre wall, we will never buy wheels like this again that is for sure.

So it was home and straight to bed for me by 3.00.  I thought if I rested my heart would get back into a natural rhythm quickly but I was so wrong,  It just kept on jumping and flipping all night until I eventually went to sleep around 1.00.  I did not eat again either after our lunch so I cant blame that on it not getting back to my "normal"  Typically I was thinking that I wished the watch that I am to wear for two weeks before my denervation was here and on my wrist  but of course it has not yet arrived.  Alex, the guy carrying out the procedure told me he was sending it straight off to me on Tuesday so it should be with me soon.

Update on this watch, it has just arrived, no instructions and nothing to see on the watch face so I can only assume I just strap it on and wear it and the work it does is done behind its closed doors!

My car is going

We always said my sister could buy my mini when it was three years old and we are coming up to that time.  This car has been a gem, our run around but it was a shame that we had a beautiful car sitting in the garage doing nothing.  When we sold it a couple of months ago it was 5 years old and had 23,000 miles on the clock, most of this was done in the two years before we bought my mini.  It seemed sensible then to go down to just one car.  Of course decision made we then decided we would build another house in not quite an easily accessible location as this one.  The one we are living in now is minutes from my local hospital, a twenty minute walk into town for those that can walk it and right opposite a magnificent park and heath.  Typically we are now questioning if we will be able to cope with one car!  We shall see but I do hope so.

Do you know?

A quick off the cuff question of very little interest but it is to me.  I love tulips, my favourite flowers of all of time so I love this time of year when I can buy them.  The best part for me is when they all droop over the vase and lay their beautiful heads on the table or window ledge, all at different angles. So why then are the ones I am buying standing straight up and proud, I hate them looking like this.  I googled it to see if I could get an answer but I could only see how to make your tulips stand straight!!!!!  I would love the answer if anyone knows please,  I just do not like the look of them right now.

So funny

In this modern world we rely now on computers etc.  We rarely seem to pick up a phone to talk, preferring to send messages etc.  I saw this on my messages one day and was so amused I just laughed and laughed.  I could feel the horror of the hubby as his desperate texts to his wife seemed to go so far over her head.  In the house was their very young son.  The horror must have been unimaginable to the hubby who was too far away to intervene.  I must share it with you, I bet you too laugh as I did.  

Being nosy

We know that there is much to be done with regards to our new house so we have decided to go and look around show houses.  This is to give me some perspective about sizes etc.  I truly cannot visualise spaces and so get worried about how big or small.  I walked into a show home kitchen and was blown away, the size was very generous, the colour scheme to die for and was  must admit  to being envious.  Then Colin got out his tape measure to show me something.  The kitchen I was looking at was in fact slightly smaller than the one we will be having!  I was so pleased about this as I sat on the sofa in the kitchen looking across the dining table and the beautiful cupboards and granite work top.  One less thing to worry about then.

We have opted for log fires after we looked around a showroom and saw the most beautiful under stated fire blasting out its heat.  It is super swish and will truly blast out more heat than we need.  As our house is being eco it will have its own blanket wrapped around it and under it BUT, there is nothing nicer than sitting in front of a real fire, smelling the wood and hearing the spitting of it as it burns away.  So another job done and now we need to discuss this with our builder as all needs to be dealt with during the building process.

So I will leave you now.  We have Izzy staying over tonight so I am looking forward to that.  I hope the you are rested after all the festivities, all your late nights, all the food and drink now eaten. Back to normality once again.

Love to each and every one of you.  This is a boring blog but truly I have done very little and seen barely anyone since my last blog.  I had in fact considered giving up my blog as I did fear it was getting  boring but this is the only way to reach family and friends world wide.  

Thank you again for the shares, the likes and the comments

Carole  xxx


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