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.  

Wimbledon

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