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