Tuesday, 7 May 2019


PHA UK Conference

This was a very special conference fo us as it marked 20 years of our PHA UK setting up.  It works beautifully well with its dedicated team who are determined to do all that they can to make our lives living with such a devastating disease run as smoothly as possible.  Beginning with a small group of people sitting around a table, our own Ian Armstrong being one of the few the idea was born on how to move forward and this amazing group rose from the ground to become the fabulous group it is today.

All who were attending had waited in such anticipation as apart from the very essential conference where we all learn so much there is also the brilliant social side where we meet old and new friends.  I myself had been longing to meet my ph facebook friend George Gaskin and his wife Nicola. Though we had talked many times on facebook I really wanted to talk to him in person. He had become pretty special to me over the years as we shared our experiences. I felt I knew him and would enjoy his company. I was not disappointed as both George and his beautiful wife were as friendly and as easy to be around as I had thought. There are too many people to name on here but you all know who you are and I want to thank you from the bottom of my heart for making the weekend such a special one, probably my best one yet.

The talks were very informative as usual and I feel sure we all brought away from them something we had not known before, yes even us old timers.  I did not attend the afternoon session as the talks were about transplant, not an option for me and CTEPH, again not my form of ph but the one in the morning talked, among other things of the importance of exercise. We were asked right at the start to press the button on particular numbers to say if we exercised regularly, very little, never etc.  The number of patients who did not exercise very much was quite alarming but at the end of the talks I was so pleased to see that the numbers had risen significantly when we were asked if they would now exercise and that there were only 2 percent who said they would still not exercise.  Such a great result.  I hope that all do take it on board as it can potentially prolong lives and certainly make us feel fitter.  We were told not to worry about being breathless with exercise, that we do not die from breathlessness which I hope encouraged those suffering with ph to try to do more.  

Whilst the afternoon talks about organ donation and CTEPH were going on we both decided to join Tess and Terry in their music workshop.  We had so much fun and though I had no idea quite what to do with this instrument I did have fun trying.  We all had a singalong too which is always good for those of us suffering with bad lungs, as indeed it is for anyone.  

Once again we were all asked to talk to our families about organ donation.  I do not mean will they donate, though that of course is always in our minds but to talk to their family about their wishes on donation. Sadly in the UK even though the potential donor carries a card wishing to donate on their death often the families intercede and do not allow their loved ones last wishes to take place!  This shocked me as I believed my donor card would be my word and not that of my family.  So everyone who carried a donor card needs to discuss with their family their own personal wishes and ask them that if the time ever came when they were in a position to donate their family allows their last wish to be carried out.  I hope people take this on board and carry it through. 

The social side of these conferences are always great, we have a lot of fun and there is always a lot of catching up to do.  I must confess that all thought of exercise went out of my head as I knew that my time with all these amazing people, all suffering from this awful illness would soon come to an end for another year as we all went our separate ways.  I did not feel too much guilt though as these times are really special and cement our friendships even more.  It was hard talking to a young lady suffering with this condition as she is on the waiting list for new lungs but when offered the lungs of a smoker she declined. ( I do understand that ) but the worry for her is when is the time right to accept even lungs such as these - leave it too long and you are not well enough for transplant - take abused lungs and do you swap one set of problems for another.  (Yes we do know about the cleaning of lungs but the concern is still there)  My heart went out to her with such a dilemma and I wish so much the cure would arrive before this decision time goes on too much longer.

Another one of my friends is on the iv line.  I know well how hard this is as I too was on it for some time before I could be deemed safe to transition over to oral.  With England at last now being given the news that we can now join our neighbours Scotland and Wales in being allowed Selexipag he asked the question could he come off his line and take the selexipag instead.  As the drug is pretty similar the hope was strong that the answer could be yes for all my friends suffering the lines.  Sadly the answer was no.  As his doctor said if he could swap the line for a tablet he would give all his patients the selexipag but the simple truth is that nothing is as effective as holding back the progression and indeed helping to rest our hearts than the iv lines. One day though - one day - we all live in hopes. 

One thing I found particularly heart warming was a small conversation I had with the the fiancé of Sean, he runs the PH UK group.  She was saying how he arrived home one day  and she knew by his face something wonderful had happened. He told her that we had been allowed selexipag after a huge fight for our right to it and they both jumped around the room with joy. I don't know many people who care so much about us fighting a disease they do not suffer from. What a team we have, we are so fortunate. 


Before the conference I had had a few days on the coast in our motor home. I decided to go into Scarborough on the bus and I was happy just sitting watching the world go by. I heard a noise and looked to the side of me and a little to the front to see that the gentleman sitting across the aisle had dropped his wallet.  Thinking I was doing a good deed I got up and went across to touch his shoulder and told him.  The response was not what I had wished for. With a vicious swing of his arm he growled "GO AWAY" and pushed me across the bus.  I was fortunate to land on a padded part of the bus where parents with prams stand. I was shocked though and so were the people on the bus. The bus driver without ado stopped and told him to get off, that he would not tolerate bad behaviour.  However when I looked at the guy it became obvious he had some mental health issues so I asked the driver to let him stay.  The busses were every one and a half hours, what could happen to him in that time. Reluctantly he allowed him to remain with the proviso that he did not cause any more trouble.  He behaved!

One day I went for a walk on the beach.  It was a good day for my lungs, we know how our days and even hours can change.  The sun was beating down, the gulls were circling and life felt so good.  The beach had a smattering of people who were walking their dogs and a few children were playing with the pebbles.  It was an amazing feeling that I felt so well, really well.  The waves kissed my boots as  I walked along the shoreline and I could have cried with the sheer joy of  being alive after the last almost nine years since diagnosis. I wanted to ring my specialists and tell them just how grateful I was for all their hard work and dedication given to us all who suffered this. These days, these times are so special and the memory of that walk with my lungs actually feeling to fill with air will remain with me forever.  

Back to reality

This is my first day back from the conference and I am exhausted.  I know there is dead heading to be done in the side gardens, the only ones done so far,  I know there is washing to be hung out in the hope that the slight wind dries it but the sheer effort it would take is just too much.   Colin is outside tilling our top garden ready to order 10 tons of top soil to be delivered ready for the turf to be laid.  Our landscape gardener is calling in tomorrow with the plans for the new garden so we want it ready for him to see where we are up to.  If we can get him to turf it soon at least it will look neat and stop the weeds from growing.  I know that the top soil needs heeling in and we have to wait two weeks then before turf is laid but I just so want to see it looking neater than it does now.  Still we cannot hurry the process.  Once the turf is laid I will try to be patient until October when all the walls and beds can be built.  I know Tim the gardener said it would be the soonest he could get around to our garden.    

On arriving home I saw I had a letter from the DVLA re my fit to drive.  I felt sure it must be the one with the absolute decision as the last one I received said they were waiting for my specialist hospital to complete for the second time the letter they had sent them asking their" opinion on my fit to drive. The first one had not been completed fully.  Anyway sadly not, it was to inform me that they were sill waiting for the letter back from Sheffield and so the wait continues.  

We have a friend arriving next week to stay with us for a few days.  We met both herself and her husband when we lived in Spain.  Sadly he died just weeks after their return to the UK.  We have much to catch up on so I need to check the bedroom she will be using is ready and tidy.  Izzy does go in it and so - We shall see.   


We collected her passport from her home yesterday as our cruise comes ever closer.  We need to send off all our passport details now and copies of our insurance which they really DO check to make sure all passengers are fully insured.  I did ring her up when we got home to tell her we were back and though we got an excited squeal when I said we were home she did follow up this with "well it is raining" so clearly she was up to more exciting things than visiting with the grandparents.  On Sunday she will be walking the highest of the 3 peaks along with other members of the family ranging in ages from 5 to 70.  This is to gear her up for her long awaited walk up Snowdon later in the year.  It was lovely that all the family on both sides want to do this together, despite many of them having done it umpteen times before.  

Gentleman Jack

At last the long awaited production will begin on the 19th May on BBC 2.  I am looking forward to this as Shibden Hall where this story begins is in my home town.  Its is a place we visit often as it lies only two miles away from us and has beautiful grounds to explore.  She was an extraordinary woman and I for one will be taping it as soon as I am able.

Its no good, I just have to move.  Aside from all the other things that need doing I have remembered I need to make 24 savoury mini pies for my church!  Though I could do without this today I need to get on with them.  

So all for now for this blog.  I really will try to hang out the washing!!!

Much love to all

Carole xxxx

1 comment:

  1. That's a rather large violin ;)
    Glad to read that all is well, sensibly I've carried a donor card for years and have made it very clear that I'm all up for grabs.