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

http://bit.ly/2reGzGb

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

Carole