Update on the hope of a cure

By the above title I mean the hope of a cure that was on our news channel over a year ago. Doctor  Nick Morrell and his team felt that they had found a cure for pulmonary hypertension but of course further work needed to be done.  I know that on mice and rats AND human tissue their testing showed that the condition was reversed.  We were told that this is a new way to look at ph and so through their searching a different route they strongly believed that we had a very real hope of a cure.

Now I am pretty impatient kind of girl when it comes to my health and as I can feel daily a deterioration in my condition I just knew I needed to follow up on this.  I sent Dr Morrell an e mail and asked how much further on they were with this.  He very kindly came back to me the same day with this.

Dear Carole,

Thanks for the enquiry.  I assume you are talking about the BMP9 potential treatment that was in the news last year? This potential treatment in now being developed by the biotech company (www.morphogen-ix.com} and we hope to be trialling the drug in patients by the end of 2018 if all goes according to plan.  The trial will be conducted in the UK so all PH centres will be kept informed when the time comes.  Please watch this space.

Best wishes
Nick Morrell

So what is my plan now.  Well of course to keep as well as I can so that I can trial the drug.  I am not sure why it is just being trailed in the UK, maybe it will be trialled worldwide too though he just mentions the UK.  I know the trials I have been on have been from Canada and America so I do know they share all their trial results etc.

We now we know where we are up to.  I think we all need a goal, something to work to and one of mine is to still be here when the cure comes.  If you open up the link, well actually you will have to google it then there is some pretty interesting stuff about it. Lets hope we are all here when the breakthrough is made.

Gosh car trouble in spades!

I took my car in as it had a slow puncture, well the computer on board kept saying it did.  After months of it being blown up around every three weeks I finally decided I needed to get it repaired.  My local garage were very efficient and said they had found a piece of metal and so sorted out the problem.  Right, good job done.

Friday I went over to Leeds and received a parking ticket.  Though  was parked correctly in the bay and my badge was clearly on display a jobsworth parking attendant looked a my car around four minutes after I parked up and noticed I had forgotten to set the clock.  Despite being in a disabled bay where I could stay all day he issued a ticket.  I was gutted.

The following day I again went to Leeds and went in the wrong way.  Anyone who knows Leeds knows it is a nightmare to get around with all one way streets and bus lanes.  I followed the loop but eventually turned too soon and found myself in a bus lane!  So I know I will receive a ticket for being in a bus lane next week.

On my way home, and no I made sure I put the time on my clock this time, I saw with horror the light came on that told me to drive carefully as my tyre was under pressure again!  Gutted I decided to drive straight to the garage and ask them to look at it again as I needed the car the following day.  They were perplexed but settled me in a chair with a cup of hot chocolate and went to work on the car.  In minutes a guy returned with the tyre to show me the problem.  There was "bubbling" around the valve and this meant that there was a problem as this is what tells the computer there is low pressure.  Nothing they could do, it had to go back to the BMW dealership.  A call to BMW and I was told that the service department was closed but she did put me onto the recovery team.  The result was that my  car was taken away on a car carrier and I have been loaned a Renault Megane.  When he asked me what would be my preference for a car I said I didn't mind, automatic or stick made no difference but it MUST be clean.  It must not smell!  I know this sounds daft but I have had loan cars that still had dirty tissues in the pockets and had tons of dog hairs that went all over my clothes.  Also I have had loan cars that smelt of cigarette, ugh!

I am told it may take up to four or five days to sort my car out!  What!!!!!!  Well at least I am mobile again.

This turned out better than we could envisage.  Colin's car was due for service on Monday so went over with him as my car was in the same dealership service department  My car was ready at the same time as his so I drove it home.  When I took my loan car back to the company they asked why I bothered with getting the car as I didn't drive it more than the few thousand yards to their office.  My reply was well as I had been told it may take days for my car to be returned I needed a car.  Only afterwards did I think to myself I should have told him to mind his own business, particularly as he tried to get £24 off me for insurance on the loans car.  As I had to give a £50 deposit when I hired it this concerned me but I argued that I did NOT take out this insurance.  Reluctantly he said he would refund the £50 but it would take a few days to reach my account.  I do not understand this as they told me that though they take details of the £50 they don't actually take it.  I shall watch my account with interest.

Roy Taylor

Sadly Roy died yesterday at 1.30 in the morning.  Not sure where he died but I think it was his own home.  Of course the family have chosen not to tell me anything of this so I was not able to say my farewells to him.  unbeknown to them however Roy and I did have a talk as I went up one evening and rang his bell, no response as he is deaf.  I looked through the letter box and he was just coming up his hall to go to the loo.  I shouted and banged the door and he opened it.  He let me in and we had a pleasant time chatting about old times.  He dare not tell his family as they said they would not speak to him again!  So sad but pleased we had this final talk.  Can't  wait for the place to be sold now.  On the plus side though with regard to property we have some exciting news of our own that I will share in due course, just waiting for final  signatures!!!

Andy Murray and Olympics in general

Well I am so pleased that Andy won another gold medal but fed up with all the stations commenting that he was defending his win after his previous win.  I never saw or heard them saying that about any other medallist who had won a gold previously.  They just said they were hoping to win yet another gold medal.  Why the difference for Andy.  Anyway he has won a second gold medal and I was so pleased for him. His opponent played a great game and this is a man to watch , this great tennis player from Argentina showed just what a formidable player he is, Juan Martin Del Pitro, what a guy to follow.  Both men were understandably emotional after the game and very tired.  They both cried and it was said that one news reporter said it wasn't macho!  what the heck,  they had fought a brutal game for over 4 hours, tiredness and elation and disappointment was at the heart of tears.  I have no problem with seeing a man cry, stop being such and old fart whoever said this.

I see that now we have some of the cheating Russians out of the game it leaves it open for other countries to really show off their skills.  Of course as Britain is doing so well there are people wondering if we too have followed the lead of Russia.  I think not, I believe we have just upped our game and shown the mettle Great Britain is famous for, well done you guys. so proud of each and every one of you.

Well enough from me as I had a dream that somebody wrote on the bottom of my blog that they were nice blogs but too long!  I woke up really believing that I had seen it so keeping that in mind I take my leave of you all again but not without once more thanking you all soon much for reading them.  It means a lot as does the clicking the link for like and comments too is always a huge bonus.

All have a great day and Stacie go well with your tests at the hospital today with regard to your lung function tests, I pray they have risen and that you do not need another transplant.

Much love to each and every one of you.

Carole xxx

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