The long and lonely nights and the goals goals goals

2.10 a.m.

The norm for me these days is that I am  awake for hours in the night.  My breathing is laboured and I sit up to enable the air to reach deeper into my lungs.  Every minute seems to stretch into an eternity and I am bored, bored bored.

The night doesn't begin too badly as I use this time to catch up with my admin for the ph website that I help to co admin.  Following on from this I then read the newspapers online, but what then...... the night stretches on and on.  I hear an occasional car passing as I like all the windows open as wide as possible and I wonder who is in the car, where they are headed, where they have been etc, boring but not enough to get me back to sleep again.  So what do I do, well get up, sit at the desk and begin this weeks blog.

Hospitals, hospitals, hospitals!

What a week it has been.  It seems almost every day has necessitated with me going to the hospital for one test after another or to a ph exercise class.  I generally attend once a week to my local hospital for a warfarin check and as this time I also needed a fasting blood test I decided to do them both together.  How stupid was I then that on the morning that I was to attend my weekly warfarin check up my husband handed me the tiniest piece of a banana that was left after slicing the rest to top off the porridge for Izzy.  Without giving it a thought I popped it into my mouth and continued to get ready to attend the said appointment.  It wasn't until I sat in the car that I realised what I had done.  That tiny mouthful of banana meant that I could not take my fasting blood test, beggar!  I could not leave the two tests until the following day as my weekly warfarin one was needed now.  So it was that I attended one day for warfarin and the following day for my fasting bloods.

Between these times I attended two ph exercise classes and one day I went for my flue jab.  I just could not get away from anything to do with hospitals, damn ph for this.

Izzy and dentist

Following on from my being bloods taken we were to take Izzy to a specialist dentist got a small filling.  No she is not given many sweets at all, far from it but having been born with no enamel on the back of her teeth we were told she would more than likely need these before her baby teeth fell out.  On a visit to have her teeth checked and painted with a form of fluoride to help protect them a cavity was detected.  In our family we do not believe in lying to our children about pain so when she asked if it would hurt we told her it may hurt a little as they would need to scratch her gum to numb the area where they were working.  She accepted this and my heart skipped with pride when we saw her happily skipping into the dentist for the said procedure.

The two dentists taking care of her were amazing!  They explained to her what would be done though they called each piece of apparatus being used by a different name to the norm, i.e. the drill was a vacuum cleaner cleaning all the bad from her teeth, the water jet was a jet steamer wiping up the mess etc.  She was very happy to don the glasses and waited relaxed in the chair for the process to begin.  They began by numbing the mouth with the anaesthetic ointment and then proceeded to inject the area.  No problems here, even her little hands did not move in the chair as she was so calm. Drilling commenced, again easy as pie and the filling was soon in place.  She got out of the chair and we proceeded to go into the office next door to make an appointment for another two tiny fillings that they had found  and needed to be seen to and then ......  she burst into tears.  The problems was she said he mouth felt funny.  No it didn't hurt but it felt fat!  well most of us have been here and yes our mouths do feel odd after the injections used.  We told he it would wear off in two hours but she was not happy.

We took her back to ours afterwards as I wanted to give her a drink and a bowl of soup before taking her back to school for the afternoon session.  No drink, no soup was eaten or drunk, she flatly refused. We did have her laughing over a game of snakes and ladders and then I said she must get back to school for the afternoon session.  Tears again, though she loves school so I think she wanted to be molly coddled for a while longer but I am pretty tough when it comes to schooling. I  believe every day lost is a day of schooling that needs to be caught up with so better not to miss in the first place. Off she went to school amidst a few tears.  When we spoke to her later though she was happy and had been the centre of attention at school and admitted the whole experience had not been that bad.

PH research confirmed

All is in place now for me to go and have the first of my appointments for my trial . I am to go to Sheffield, my specialist centre to sign all the paperwork and to have the usual pulmonary function tests, bloods, 6 minute walk, urine and ecg.  Following on from that we are to have our holiday and then return for the two days of intense testing and my right heart cath.   I am so hoping for some improvement whilst on this trial as the alternative its the hickman line but we shall see, what will be will be.  My wish would be to go for a while breathing without thinking, taking deep breaths with no effort, will it ever happen in my lifetime, well I remain ever optimistic about this.  If we have no hope then we have nothing and so with that hope in mind we need to set ...........

Goals, goals goals

It would be so easy for us all to just sit in a chair all day, easy but boring and senseless.  We have been given a life and no matter how compromised we need to try to use it to the best of our abilities.  So for me I like to have a goal, something to achieve, something to work towards.  In the beginning it was to meet Izzy who had not been born at that time, then to see her go to school.  My goals alter as months and years go by and now my latest goals are ..... seeing lots of my friends from Javea in Spain.  To that end we are so fortunate as two of my friends have volunteered to get in touch with people, set a date and time and book a couple of venues for a catch up and meal so very happy days ahead.

One of these lunches will be in the golf course restaurant that was very close to where our villa was.  In fact it was on the walk back from lunch here where we all realised the gravity of the situation with regard to my health.  The beginning of the walk back through the grapevines, on through the fennell fields, a stroll back through the almond orchards was fine and then as we began to climb up toward the villa my heart just wanted to give in.  My face was sooooo red it took 24 hours to calm down.  Anyway the rest is history and here I am but from where we are meeting for lunch and catchup I will be able to see my lovely villa nestled into the hillside amidst all the woods. It will be sad but at the same time lovely to know we have made a mark on the landscape

We shall meet with other friends over the course of the holiday and Colin is hoping to join in some of the walks the Costa Blanca mountain walkers are well known for.   Whilst he is doing this I will be resting under the naya and friends will visit me there.  We are so fortunate that friendships made when we first arrived in Spain are still going on, wonderful times ahead.

Our new build

Very early days here yet but we have met up with two lovely architects who will have the responsibility, along with us of course, of designing the new house.  We told them we wanted something a bit different and though too early to say for sure there is a strong possibility we shall have an eco house built.  They love the land, the position, the views and so bearing all of this in mind and our needs we will work together so once again, another goal.  This goal being that I am determined to live in this house and enjoy all that it has to offer us.  I will update on all of this as things become clearer.

Sad news

We lost our Canadian ph sister Cindy Mallory a couple of days ago.  Her husband came on and told us that her fight was over and that she was resting peacefully now.  How heartbreaking to see the post but of course we must see them, we need to acknowledge that the fight is a tough one and that we lose friends along the way.  Our hearts go out to Cindy's family and friends who saw her battle on unit the fight became too much.

Another post that was equally heartbreaking was one where we learnt of the death of a very young girl Erika Cowie from Swindon in England.  She had only just celebrated her 18th birthday and Stacie Pridden who posted the news was, of course, devastated as they were good friends.  To lose any of our family affects us all deeply, we all feel it as a personal loss to our community. To lose one of our ph sisters at such a young age is so cruel a blow.  Once again our thoughts and prayers go out to the family and friends of Erika, such a brave girl who fought the fight so hard until the end.

Lyric Parsons the baby born with severe ipah was so incredibly poorly.  The medications were not helping and so in the end they had just one more action they could do.  This was to put this tiny new baby on a very toxic medication flolan.  It was very much a last resort for this beautiful baby and thank goodness a post was sent for all to see that she is responding well to this medication.  Her parents can now hold her at last, how wonderful this must be.  I hope and pray that she continues to respond well to this drug and that in the not too distant future all these ph treatments become redundant as we come ever closer to achieving that goal.

PH Conference UK

What an absolute delight it was to hear the news that a date has been set for our longed for conference again.  The venue is the same as we have had for the last few conferences as it would be hard to beat.  This beautiful hotel lies nestled on a golf course in the beautiful Oxford countryside.  Our diaries have no doubt been pencilled in with the two days in May, babysitters are being called on to put these dates in their diaries too as they will be needed so their family member with the condition can attend this very important event. These conferences are a source of information but equally as much there is the association, we meet up with ph friends we have spoken to on faebook, we meet and make new friends too.

Well it is time for me to fill in the paperwork needed so I can once again get my bloods done.  This time it is the full blood box that will be then sent off to Sheffield laboratories with my blood to be analysed and check that my liver function is not impaired with the toxic medications we take and a host of other things that this blood is checked for.  Most ph patients have this done monthly along with their inr blood test that can be done as often as weekly in my case.

Once again I take leave of you all and hope that you stay as well as you can do.  Thank you again for the likes and the shares, it shows me that you actually do read the blog!!

Warm love to you all

Carole xxx