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