Wednesday, 28 June 2017

Another denervation for PAH

Well Done David

No not for me but for a ph friend who has been number 13 I believe to have this procedure.  I had a long talk to him this morning and he is feeling fine after a good nights sleep.  He said he never fares well in the hospital as the beds are not made for somebody as tall as he is.

Regarding his denervation he felt it went really well.  The only issue he had was that his bum was going numb with lying so still for so long!  Understandable of course.  For him the relief came when he could move from cheek to cheek, bum cheeks of course! Once again he said all the staff that took care of him were so lovely and calming.  It sounded like most of the ones in the theatre that dealt with me dealt with him too.   This makes absolute sense as because it is so rare to have this procedure then yes, of course, make up the team that has seen it done before and knows how it goes.  

Katy and Faith were in with him and Dan so he was having the best care possible,  Of course Alex , our lovely main man was his usual calming self and all went well with the exception of there being a small problem with one of the catheters getting stuck in his neck.  This was handed over on to one of the staff from the Israeli group when it was retrieved and will be sent back to test why it failed.  No emergencies, no problems, just all smooth sailing.  This is what I expected as Alex is such a calming guy and so capable, of course, which is why we put our trust in him in the first pace.  

Dan, Katy and Faith were as always very efficient in their roles in the theatre so he felt at all times he had the very best care.  For him the relief came when he could move his bum, for me it was sitting up after being still in one position. for so long.  

So there we go, another one done and we wait to see how he goes on.  If he goes as well as me he will feel it was all worth it.  I did warn him not to expect to be feeling much difference in the next two or three weeks, just a slight feeling of being able to do a little more slowly slowly.  

I still continue to feel better than I did and and am hoping that it continues to improve.  We shall see at my next appointment.  I am sure you will all be wishing David a great result, as indeed I am.

Here is an interest link to PH

Woken to fire alarm

Certainly my day began slightly different to the norm as we were woken to the fire alarm in our apartment.  The time was 5.20 a.m. It took a second or two for us to realise it was the main alarm which meant we all needed to evacuate our homes and meet downstairs in the main foyer.  With all that had been happening with London and the fire in the apartment block there  none of us wasted any time, although our apartments are built of stone we are still three floors high, having only 24 apartments we knew we needed to move swiftly. 

Dressing gowns on and into the corridors we were met with one of our neighbours who told us the problem was in number 16   This was our floor though another corridor, we only have three apartments on ours.  We quickly made our way to the door of this apartment.  The lady living here had only moved in two weeks prior so I knew she must be so upset to be causing this, of course it was not her fault, I pressed the bell a few times until it opened to a very frazzled neighbour saying she could not sort out the problem.  I gave her a quick hug and told her all would be well.  Colin then got onto the case and spotted that there was a problem with a thermostat on the cylinder,  it had failed and the water had reached such a great temperature it actually was blowing steam out so much the apartment was full of it.  Colin dealt with the problem as well as he could and everyone was free to go back to their beds.  We however did not bother and we told the person who lives in this flat to come to ours for her shower and a cup of tea.  All sorted now but what a start to a day.  

Oh happy days!!!!!!!

We had Izzy for a few days last week as my daughter and her guy were going to Royal Ascot for ladies day.  I was full of anticipation as I knew that Chris was going to ask my daughter if she would marry him.  He had come to see us and asked us if we approved and of course we had both said yes.  It was a secret I had to keep from my daughter.  I knew she was very happy but marriage is a different thing so I just had to wait and see.  

Chris never mentioned this again and over the weeks I was never quite so sure if he had changed his mind, though seeing them together I could not see why he would.  I was in bed with Izzy the day before Ladies Day which is where he had initially intended to propose.  I heard the ping of my phone and read the message.  There in lovely colour was my daughters hand with a beautiful ring on her finger and the words, Chis just asked me to marry him and I said yes.  Oh the joy, I was ecstatic and told Izzy who was so excited she jumped out of bed and hugged her grandad so tight saying how amazing it was. 

Later when I had a chance to talk to my daughter she told me Chris had decided she would not have liked to be asked where it was so public in Ascot and he was right.  He talked to the manager of the restaurant and told him what he wished to do.  So here is how it went.   They ordered their meal and when the starters came they were presented with the big silver domes covering them.  Chris had his placed before him and the lid was lifted to show his first course.  Then came the turn for Danielle, hers was lifted to reveal an engagement ring surrounded by beautiful flowers.  She must of course have looked surprised and then Chis asked the question.  She of course said yes and then a cheer went up, the champagne was poured and so begins a new journey.

Now I have another goal, to see my daughter marry and yes I will be around to see that as I am fighting back the ph.  When I consider how bad I was when first diagnosed to now I could not be more pleased.  Of course I still have ph, of course I am limited in what I can do, of course I do still suffer BUT I am here, I can join in celebrations, I can talk to my daughter about her dress, flowers etc.  I could have missed it all and of course the birth of Izzy without all my A Team at Sheffield, without the care and attention, without all the research, without all the knowledge.  What a huge debt of gratitude I owe to each and every one of those responsible for my care. I am truly blessed.  

Have you heard of Bakewell pudding?

We went to meet some friends of ours in Bakewell,  this was a halfway mark for the four of us.  These particular friends are some we made whist we were living in Spain and we just jelled as you do with some people.  Whenever we are in Spain we meet up so what a joy it was to meet up with them in Ye Olde Pudding Shoppe and have a catch up. This cafe was the very first place to bake a bakewell pudding. I do not like them, way too sweet to my taste but they are very popular and people flock to Bakewell daily. We spent a few hours together taking in the beauty of the scenery around us, spoke to a few cows in the fields, took a few pics for our albums and then had lunch before we left them.  We did take up some time discussing how we were falling apart too with our various ailments, there certainly is no joy in getting old but better than the alternative.  

We then decided to see if my ex nurse was in as she lived close by.  Now Liz Pinky Wright was a star at putting me at ease when I was first admitted to M2 ward at Hallamshire and along with another nurse Allison we actually found ourselves laughing sometimes.  This was amazing after being given such a devastating diagnosis.  I kept in touch with these lovely people and so it was so nice to walk to her door and be greeted with the biggest warmest hug.  We caught up with all that had happened to us all in the almost 7 years since diagnosis and we talked about how she herself was coping with the loss of most of one arm.  Now she too is not a quitter and is looking to see what she can do to help others who have lost, or about to lose a limb, what a star she is.  Now a grandmother herself we of course compared a few notes with each other.  I could barely believe it was 7 years since I had first met Liz and we intend to try to meet up with her later in the year. 

Now time to look forward

My colonoscopy went ahead as planned and once again how very grateful I am for the care and diligence given to me as yet again 4 polyps were found  Not all were the type that turn cancerous but two were and it only takes one after all.  So yet another hurdle over for the year, just my pain clinic to get to me and deal with my injections into my neck and I will be hunky dory for the next few months.  Oh my, one thing after the other!!  Again though no complaints from me, just a huge thank you to all of those taking care of me.  

I know it is nature but so sad.

I know some of you have enjoyed the picture of the geese with their goslings.  I went to see how they were doing last Sunday on my way to church and was pleased to see how they have grown, floating by on the water.  I then realised that there were two mothers and only one male with them  The previous families had two parents and three goslings and two parents and five slightly larger goslings.  Now there were a group of eight goslings and three parents paddling on the canal.  I looked for the other male one but to no avail.  Then I was told by somebody else that sadly one of the fathers was taken by the minks that roam our canals and river beds.

Many years ago we had a mink farm a few miles from us.  The minks were set free by some animal rights people and though some were caught many escaped. They now spend lots of their times on our waterways and though I am happy that we rarely see a rat these days they do also kill off our geese, voles etc.  I know it is nature but when it was pointed out to me the big pile of feathers that was all that was left of the father of these goslings I felt so sad.  

House plans got a bit pear shaped

Sadly our much anticipated fire cannot be installed into our house as it is eco.  Apparently having a fire would not work in an eco house as it is so sealed.  There is just one that could go in but it is one I hate.  It would look ok if we had a barn but not in a modern house so that is out of the window.  We have enough wood to burn for years so we maybe will get rid of some and save all we need to have our outside fires as we used to do, plus of course the kids living next door (Chris and Danielle) will have easy access to it should they want to burn wood in chimmeneor or some such thing.  Never mind it has not put me off and I am beginning to believe all will be well with the house.

We are now discussing house names so that is one of our next hurdles, plus of course dealing with all the services that need to be installed before the build.  I forgot just how much there was to be done before we can move forward but move forward we surely will.

OK all for now as I feel I have a virus not ph related at all but it has made me feel a little odd and a little sick.  I do hope you are all feeling as well as can be.  Colin has gone to collect Izzy and I feel I will need to keep my distance from her.  Never mind she will be staying over one night just before we begin our Scottish holiday so many cuddles then I feel sure.

Go well and thank you once again for the likes, comments and shares. 

Love to you all


Friday, 16 June 2017

Denervation news - the results are in for this stage

Shattered but pleased

I can't  believe how exhausted I feel today after my hospital follow up for the denervation.  I think it must have been all the pent up thoughts and questions etc going around in my head.

Anyway here goes........  the news is good, not amazing but good,  I will take that.  My walk test was really good which astonished them so much they checked and re checked the measures on the floor.  Now not to say I could do this all the time, remember I was high on adrenalin but nonetheless a pleasing result.  

After lunch we were taken to the day care ward prior to my right heart cath and given a bed, oh the joy of getting my feet up at last but it was not long before I was on the move again.   All proceeded very quickly and efficiently as it seemed in no time I was taken up to the room next to the theatre.  Here I had a wonderful surprise.   Dan, the nurse who was with me throughout my denervation and who also took care of me for the 4 hours afterwards when I was waiting to be stable enough to return to the ward walked in.  Oh the joy of being enveloped in his arms and be given a huge squeeze.  He said he had seen my name on the board and wanted to try to get into theatre with me.   This proved not to be possible due to an emergency they were expecting but hey, so lovely to see him again after the lovely support he gave me before.  

Onwards then to the theatre.  The right heart cath holds no fears for me so no sedation was necessary. What a lovely lot they were in the theatre too.  All very pleasant and so well versed in their own roll.  Alex covered me up but left a little of my face exposed and on we went.  Now if I expected this to take only around 20 minutes I was so wrong.  Being part of research they needed a lot more than the normal pressures, wedges etc.  Once again I wore the mask after the initial pressure and wedges were taken and breathed in the nitric oxide for ten minutes and then more readings were taken. 

One hour and twenty minutes after being taken off the ward I was back in recovery.  This time I was greeted again by Dan who was staying with me to do the blood pressures necessary etc.   Alex came in and took all my notes so he could compare them to last time.  Dan, well versed in procedures of the a similar nature very kindly got me a box of tissues ready should they be needed when the results came in.  I did not have long to wait before Alex returned and told me that my pressures had dropped by 6, my heart was coping ok with the pressures though no real change there.  Alex was also pleased and relieved that nothing done concerning the denervation had had a detrimental effect on my ph. or my pulmonary artery.  We need to remember that this is all research and a learning curve so again a good result.  

Pushed back to the ward I was able to get off the trolley and walk to my bed.  No pat slide needed this time as there was after the denervation.  Colin had been concerned as I had been gone by this time for two hours.  We had then to wait to see Alex who was at that time doing another denervation patients' right heart cath.  At six o clock he came to see us and explained to Colin the results of the tests and we were allowed to go home.  We will return again in four moths time but no right heart cath needed, the last one will be at the twelve month follow up so who knows, my pressures may continue to drop a little.  I know too they may rise so I have no expectations, just pleased this step of the research is over and now on to living with ph and coping from day to day.


Today we are seeing the builder we gave all our plans to to discuss his prices etc for our new house.  I am very interested in this so I am fortunate enough that though still tired it is not such a day where I need to stay in bed.  We both have many questions buzzing around in our heads so need to keep our wits about us as we go through this very crucial stage. 

Just the sweetest thing these last few days

As you know I love to trundle on our canal and river banks, especially at this time of year when there is so much happening.  I had watched with interest a family of Canadian Geese on a certain stretch of the canal.  I saw their three goslings following the mom as they went gliding effortlessly by.  

Well on Wednesday Colin went with me and we saw these same goslings nestled under the wings of their mommy on the bank.  We both stopped and took pictures and as we looked around we saw yet another group of goslings, though slightly older than the first. They were so cute we snapped away at them and were happy to see that they had no concerns that we were so close.  

It is days like this that I am so extremely thankful we have the researchers, the doctors and the nursing staff that takes care of me.  I know without a doubt that their care watching over me  watching over me the sight of these goslings would not have been afforded to me.  I would have been gone, lost to all of this.  I love nature and the smell of the fresh air, the beauty that surrounds us and was once again so grateful to still be here to see such beautiful things. 

Our weekend

We have the had as you know the plans for our new home but no building is yet going on.  We cannot leave the site to  overgrow with grass as this would be so disrespectful to those that drive past.  This weekend will be spent mowing the grass and repairing a gate that was damaged when all the tree felling went on.  No easy job for Colin as there is a lot of digging to be done and a new post to concrete in position. 

Stacie Pridden

Most of us on here will know our lovely Stacie, and  will have followed her journey through her heart and lung transplant and seen the remarkable recovery she made.  We will then have gone on to see how she then began to deteriorate to the extent that now she has been told there s nothing to be done, no magic cure, no second chance of a transplant.  If we follow her blog "LifeisWorthTheFight" we will also see how she is still enjoying life to the best of her ability.  In order to do this she has the help of course of her family and friends but she also has her wonderful partner Mark.   

In order to do even more in the time left to her she has set up a go fund me page.  Now I would not normally mention them in my blog but as she is so remarkable coping with all of this I want to give you the opportunity if you visit her page to donate a small amount of money if you wish,  She is hoping to raise enough to buy one of the wheelchairs that cope with harder terrain than the norm so that she can be pushed up mountain sides, on the sands and rocky beaches etc.  When the time  comes she no longer needs this it will be handed over to another person to benefit from his wonderful gift.

Please read this blog. It will have you in tears so have your hankies ready and consider if you can think about helping her reach her goal.  

Well all for now but I must finish with saying a huge thank you for all your well wishes and support.  I really can't begin to comprehend how all those not  in a support group manage to cope without all the back up we have, all our brothers and sisters with ph who really get "how we feel". I am always thankful too to my other friends who are supportive when they themselves do not have ph.  They still offer their support and love and I feel so humbled.  

Warm love to each and every one of you

Carole xxxx

Tuesday, 6 June 2017

Denervation - am wearing the watch.

Not so sure about this any more

I am going for the right heart catheter on the 15th to see if there is any improvement in my levels since my denervation.  I truly do not know what to think any more.  The first three months were great, well after the first three weeks anyway.  I  felt so much more alive and was able to do more things without all the effort it normally would have taken me,  Since I had an episode of not feeling the best a few weeks ago I feel I have not picked up as I would have liked.  I did ring Alex and he reminded me I do have ph, we do have these stages but I truly hoped it would have passed.  It hasn't save for an odd day or two along the way.  My lethargy is huge, everything is so much of an effort.  I hate feeling like this.  Then watch has arrived that monitors so many things for me over the next two weeks so we will see what it reveals on the 15th.

I decided to push myself a little yesterday.  The day was terrible with the weather so I wanted to pull out the boxes that hold all Izzy's craft things and with a huge effort I managed to pull it out a little.  I pushed my way behind them to find a new lego, unopened had fallen down the back, great joy for Izzy.  I foolishly got onto my knees to dust round the back and just could not stand up.  I had no way to push my legs upright  at all, just no energy.  I shouted for Colin to come and rescue me.  Quite what I would have done if he was not around I do not know  There was certainly no way I could have got back up then as I was so firmly stuck behind the boxes, no strength to do anything.  How I hate ph.  

Bloods and David Cameron

My weekly blood test for warfarin was quite amusing today.  There were quite a lot of people waiting for the other bloods, not warfarin fortunately or I would have spent rather a long time in the department  I saw a man queuing in front of me wearing shorts, the weather was appalling and this man was obese.  I am not saying anything abut him being obese, there could be many health issues here and I also saw he had another one, his legs were just full of scabs, drying ones that made me wonder if he had a skin condition.  It must have been very severe to cause such a mess on his legs.  More than likely that is why he was wearing the shorts as material touching them could have caused him pain.  This is not the reason I smiled at the clinic but what happened next, a name was called and it was David Cameron, Of course all eyes turned to see who this was and then this guy wearing the shorts, so unlike David Cameron stood up and went into a cubicle.  I could see the smiles on the faces of the many in the waiting room.  He was so unlike our ex Prime Minister.  It was what happened next that set us all off into gales of laughter.  The next name to be called was Diane Abbot, the shadow home secretary in the labour party.  Most of us who knew  the name of the members of parliament were just in howls of laughter.  One "famous" name was funny enough but two, one straight after the other!  

On returning home I saw a guy in the street eating an ice cream!  The time was 8.45am, I wondered where he managed to buy  one so early as it was not one you could've taken from your fridge.  It was so obviously one of those that have a lot of air in them, Mr Whippy maybe.  I was so intrigued as to where he got it from at a time most of us are eating breakfast and not ice cream  that I looked up into the park opposite me to see if I could see an ice cream van.  I know a van does go in but not generally until the afternoon.  There was lots of activity going on as they are setting up for our annual charity gala, maybe he managed to get it from there.  I came home and ate my muesli!  

To pot or not to pot

I have a problem with my ankle.   It is called something like peroneals tibias anterior.  It is extremely painful and I have no idea why it occurred.  I do have a problem though in striking down with my foot onto the right side, as opposed to the middle or the left.  Now one way of fixing this is to pot it for six to eight weeks.  I do not want to go down this route so instead have had a special insole made which will force my foot to turn the other way, giving the tendons a chance to heal.  To have this made we went to a place called Whalley as there is a fabulous outdoor shop and upstairs a separate clinic for foot problems.  After my insoles were moulded and we were done we decided to take a look around Whalley.  Though we have visited many times we never got to see the place really.  We were very impressed and a little envious of our ph sister Catherine Makin who lives here.  If you are ever in Lancashire and near this place go for a look around, a small village but very sweet with lovely hills surrounding it.  (picture is the river in Whalley)


As we live quite close to York we decided when the weather was lovely to take a drive into the City.  Well a 40 minute drive took us over two and a half hours due to traffic and road works.  I wanted to go visit the Jorvik Centre now it is up and running again.  I was not disappointed.  The "street" and its inhabitants were still there, with two new ones added.  We discussed what to do with Izzy when Colin brings her here again in August and this is still on our list as she loves it.  Another one for her is the "dig" where she can join an archaeological dig and see if she can find some artefacts.  York has a wealth of history and there is still much to be discovered.  She has begged to go to the Treasurers House when in York to see if she can see the ghostly Roman Army  said to haunt the cellars.  This is a surprise to me that she wants to do this as we took her to the Thackray Museum last week which is a medical museum in Leeds she was terrified!

Thackray Museum has won many awards and is an amazing place to visit.  There is a street with all the foul smells one would have experienced back in the late 1800's.  It takes you on a journey following various people, some quite well off and some being the desperately poor in the city.  On setting foot on the street you are immediately taken back as you walk in between houses and shops, seeing the ones inflicted with such terrible diseases.  There are quite a few workshops where you can learn about many medical operations that went on and how they carried them out.  Some of the pictures are quite graphic but for the not so squeamish it is a great place to take the children with much learning about how things used to be.  

Colin did take her to the Wakefield Mining Museum which is where one actually goes down the lift shaft and into the mine . I was surprised that she actually loved this, even leaving her grandad on a few occasions when the man showing them around asked the kids to go into some of the tunnels that were too small for the adults .  She came home happy but black.  The guy that showed them around asked all the children when they came back up from the pit face to put their hands into a barrel of the coal dust, of course all the children complied and then he told them to rub their faces with it!!  Result very filthy kids but it did give them a picture of just how the men working down the mines day to day would come to the surface.  I took mine to this when they were small and they too loved it.  This one is in Wakefield for those looking for somewhere to take the kids through the long summer holiday. 


I can't bear to talk about Manchester and London and the terrible things that have happened to the innocents.  It just makes me too sad and I am leaving this out but they are all in my thoughts. 

I don't know if it is all this going on that is making me feel so down but down I definitely do feel.  I can't seem to summon up much interest or enthusiasm for things right now.  I just feel to be a bit separated from the world if you know what I mean.  I cannot  explain it but there it is.  I hope I begin to pick up soon.  Maybe when we hear from our builder about the price for the new house I might get some enthusiasm again., though in fairness I can't even summon up any enthusiasm for that.  It doesn't help that our boiler is leaking and that is quite a big job to be changed, shelves need to be emptied and unscrewed, carpet taken up, just mess and more mess.

Well I hate leaving you on a sour note so I do apologise!  I think I am calling it a day for now, putting my floppies on and am looking forward to seeing Izzy who is staying over for the night.  she does make me smile so I do still have a few smiles in reserve for which I am thankful for.

Warm love to you all for reading this, for bothering to click the like button when you have and for any comments.

Carole xxx.