I CERTAINLY OWE THIS LADY MY STABILITY - DO YOU?

As most of you know we have been away again in our motor home.  One lovely consequence of moving around means that I just might be fortunate enough to be in the vicinity of another ph patient.  This time we were in Norwich.  Beautiful place this certainly is and we spent a night on the drive of our niece and her hubby.  This couple certainly have the green finger touch and I was so shocked as to how their garden had come on since the last time we saw it.  Veg were growing in abundance as was fruit, the chickens were laying well and I can testify the fennel was certainly showing who was boss as it kept catching around me as I went from motor home and into their house.

Our welcome was a very warm one and made all the better as they had no idea we were going to park on their drive until the evening before. Whilst I was there I wrote a post asking if anyone lived close by. Mandy Leonard wrote that she did, in fact only around 7 miles from where we were. Without ado off we went  to park on her drive and have my first ever look at this lady that I owe so much to.

Now yes I know about my A Team, I mention them so much but I knew just what a huge debt I owed to Mandy.  You see Mandy was diagnosed with PAH around 2005 after having symptoms for years before that. Now those of you with PAH know that the new meds are slow to come onto our space, slow to be allowed etc although as we are are a rare breed we do get special allowance from the government to say that ours can be given to us without all the delay needed for most meds.  That is because without our meds we absolutely will die.  

So think on this -  here we have a lady who had never heard of PAH, scared for sure and not really much out there other than channel blockers, bosenten and iloprost etc.  The specialists got their heads together and after talking to Glaxo Klyne who was hoping to trial a new drug they believed would help they asked Mandy if she would be willing to trial it.  There were just 6 people trialling this med.  Generally when I trial there are around 20 so only a small number for ambrisenten indeed.  Well long story short really as those of you on it know the success of this particular drug and that also unlike Bosenten which has a greater danger of the two drugs to cause liver and kidney damage this med appears to be a good one for PAH.  I myself switched to it after coming off the hickman line and have been so grateful ever since.  

After the trial the drug was expensive and the government just could not, or were not willing to pay for such an expensive medicine right there and then. It all needed to go before boards and talked about at length. The drug company though saw just how well Mandy for sure was doing on it, I cannot say about the others as I have no knowledge. They allowed Mandy to continue to take it without charging the NHS who would not then have allowed it and always asked how she was doing whenever her packet of this life saving drug was ordered. In time of course the drug was approved and the money found to allow the drug to be available for the many of us.  Thank goodness for that.  

Mandy looked great, here she is 15 years after diagnosis keeping a beautiful home for herself and her hubby and son. By the way her son is really gorgeous if there are any young single girls around that area!!!!!!  He just might kill me for that. Anyway the crux of the matter is without this drug I just might not have remained as stable as I am. I might have liver damage or kidney damage etc.  So yes to me Mandy is top of my list for helping me to remain alive after my initial diagnosis.  It is thanks to people like her that I decided to trial as I knew of the benefit I was getting from drugs trialled by those before me.  So yes  - Mandy a HUGE thank you to you and I hope you continue to do as well as you are doing. I will not give up trying to persuade her to attend our conference.  A lot of the newbies can see how well she looks 15 years after her initial diagnosis.  It will certainly be a huge boost to their minds.  

Home again

My family next door are home again after their holiday.  It sort of felt lonely for the few days we were home and they were not.  Nobody running around the garden, no rabbit hopping merrily around in the sunshine and no faces at the window.  To welcome them back I took them flowers from our garden for their family room and a few sweet peas for Izzy as she loves the smell of them in her bedroom.  They asked me to get them bread and bacon as they were craving a bacon butty!  Turkey of course does not serve pig and though they rarely have it here I think it is what you cannot have you miss. So up got Chris early this morning and made bacon sandwiches for breakfast for himself and Danielle.  Happy faces for sure.  

We appear to have got rid of Mr Fox as he has not been seen for over two weeks now!  I hope it continues.  I am giving the box of bone and fish meal we bought for the garden to a friend as studies show that foxes are attracted to it, anything to stop it coming.  So there you have it, it appears that male urine, lots of it, in particular the first morning wee and my smelly dousing of all the plants with boiled up garlic and scotch bonnet chilli seems to have worked.  I am very relieved.  I used to see it in the driveway at 4.10 am each morning. Strange how it always came at the same time and I always seemed to be up making a call of nature. Anyway I saw it three times in the same place at the same time.  It must then have run around and came back to attack our plants from a different angle.  Well no longer does our drive smell of fox pee and poo.  

Today I woke up feeling good, no PHAT day for me {pulmonary hypertension arterial torment} or at least very little.  Would that all days were the same. So as we had just had more indian paving stones put down at the back of the house I decided to jet wash all the ones that were already down.  They were certainly grubby compared to the new ones.  I ended up with sand in my hair, face and I will not tell you how bad my clothes were as they were unbelievably bad.  Chris said, and he was correct, I should have worn my outdoor wet weather gear but the sun was blistering hot and I think I would have died!   The problem is that doing one job sets up another.  The sun terrace threw all its sand onto the bi-fold windows and so another job to do, plus all the glass surrounding it needed to be sorted out.  Fortunately I did manage to complete the job and did not have to hand it over to Colin who himself was working very hard cutting all the hedges.  So I am rather proud of my accomplishment today and thank you pressures for staying good whilst this was going on.

Pressures

Talking about pressures as you know I have the cardioMEMS machine.  I thought I was doing pretty well, I really did so it came as a shock whilst we were on holiday to be rung by a member of the team and be asked to make an appointment to see Alex.  It appears my pressures have been steadily rising for some time.  Strange how today must have been good for me to do the job that I did.  Yes I do get  tired a little earlier, I do puff a little more than I did and yes that annoying cough is showing its ugly head a little more but generally I have no complaints.  Anyway the top and bottom of it is that I have an appointment at the Northern General in Sheffield on the 12th September.  

At the same time I attend this appointment  I believe we are talking about two trials and hopefully one that just might be ok for me to join.  I know many of you  - like myself - are still waiting for Nick Morells trial from Papworth but I have heard nothing about it being that one though I will of course post if it is.  Well of course I will post no matter what trial so watch this space.  

Looking ahead

Loads of lovely things to look forward to which I believe gives me a huge boost.  Our niece is coming to stay, though just for a couple of days. I have a lovely ph friend called Paula Joanne Smitham and her fab hubby coming to stay for a few days in September too and just maybe, in the offing a friend who lives in America might be able to come over and stay with us for a while.  We also have a holiday booked a little later back in Javea and have already pencilled in lots of diary dates to catch up with our many friends who live in this beautiful town.  So I will certainly do my best to keep on top of things, to stay healthy and well.

Ah there goes the bell.  I am hoping it is a small package containing the sheets that are now used on top of the barbecue grill. Chris uses them next door.  The food cooks well with the lovely lines on that come through from the grill and no need for a messy clean up.  You just wash the sheet or sheets out with hot water and put it away until the next time.  We were amazed when we saw him using them and for sure the worst part of any barbecue is the clean up.  Now it will be made so easy we might use ours much more than we do.  

Izzy

Well now she is home tomorrow I will have her pick her first apple off our tree, pick her first strawberry and cut green beans for tea. I want her to learn to enjoy the garden and I believe if there are nice things growing it just might encourage her more.  Colin is still to make me my raised bed to grow more but I have done ok.  When the bed is in I will ask her to help me to choose which fruits or veg we plant.  She loves her veg so we should get a good variety.

Right all for now, I made a curry for tea yesterday, yes even in the blistering heat and now we are taking it down to our friends house and will all enjoy it whilst sitting in his beautiful garden. As we are still without a lawn we cannot do that here yet.  I am so hungry as I have put myself on a diet since hearing my pressures have risen, maybe that might be the reason, who knows. Anyway we have also just been out to buy a water butt which seems to fascinate Izzy, I do not quite know why and that needs to be fitted today. We also purchased lots of crocus bulbs to plant as it is a perfect time once the top soil has been laid and she can do all the bending down to plant! Slave labour for sure.  Just maybe I might buy her an LOL if she does well.  

Take care, enjoy the sunshine and I will speak again after my appointment at Sheffield and let you know about new trials and my pressures etc.  

Warm love to all.

Carole xxx