Symbol of the Zebra and Trials and Tribulations

Now most people who read this blog will know what the sign of the zebra means.  Doctors are told if they hear hoof beats think horses. As we know to our cost sometimes hoof  beats can mean something else.  PH specialists are trying to reach doctors with the message that sometimes hoof beats can mean zebra.  Ph is often mistaken for asthma, COPD and other diseases and often, no matter how many times we try to say, no it's something else, I feel it, the doctors go along with the horse theory. This leads to a worsening of our disease and sometimes this is fatal. If you are constantly having trouble breathing, tiredness shortness of breath, fainting, feeling sick etc and despite the doctors telling you it's just asthma etc ask them to look at ph.  This just MAY save a life or severe worsening of the disease.  Most of us with ph have struggled for years to get a correct diagnosis.  As ph is a rare condition many doctors will never have heard of it so bear this in mind if you or a loved one have symptoms that do not improve despite medical intervention and ask them to think zebra.  In other words think outside of the box medically speaking.

I have received the paperwork for a trial I am hopefully going to be part of if all goes well with preliminary tests.  This study is going on with 120 patients in 70 medical centres worldwide and can last up to two and a half years. At the start I will have all the usual tests, MRI, ECHO, ECG. RHC, lung function test, 6 minute walk test and various blood tests plus weight and height and liver function tests.

The end result of this study will be to see if the trial medication we have been taking has stopped or slowed down the progression of ph.  Now this is not a cure, that will come at a later date but if we can halt the progression of the disease it means we can stay stable long enough for the cure to be found.

There is no specific name for this study/trial, it is just letters and numbers.  It is a double blind trial with a placebo and three different strengths of the drug.  For the first six months this is how it will be but after six months those on placebo will come of this and also take the drug.  There is the usual waiver to be signed at it also says that side effects maybe death!!!  It has been tested on healthy humans and on mice but they do not know how the drug will react to our ph medicines we already take. If it is deemed advisable to halt the trial along the way then they will, of course do so.  It maybe that they decide it is a great drug for us and they will begin to take steps to market it.  Just watch this space ............. I shall,  through my blogs,  inform you of anything noteworthy re this trial/study.   I do believe it is an American study.  My last trial was a Canadian one trialling DCA.  If you choose to look it up online then google trials for ph  ASK 1 and then look for GS US 357 1394.

Tribulations......  Well in the grand scheme of things it does not sound much but we live opposite a park called Manor Heath, deeded to the people of  Halifax by the John Crossley family, wealthy factory owners of Dean Clough Mill, reputed to be the largest factory for making carpets in the world.  It is for the people to enjoy and indeed it is a pretty place to go to for picnics, to see what I call the secret garden, an amazing space growing numerous flowers and fruits or indeed to go to see the butterfly park where there are Terrapins and any number of birds and butterflies plus amazing sub tropical plants.  The children play here and there is a children's park with the usual slides and swings etc.  Our granddaughter Izzy loves this park and calls it "her park" and she and grandad are very regular visitors to this place.  Surrounding this Manor Heath is a wall centuries old and well maintained

 On leaving here we are then surrounded by a large  moor  73 acres, again given to the people by the Crossley family.

The Crossley family also built an orphanage, a beautiful building and they took in children and educated them well and placed them into apprentishops on reaching 14.  The children were dressed well and taken good care of.  The home later became a school for the blind and is now a grammar school.  Surrounding this school is the moor and it is well used by the children of Halifax for playing football and other games. Again picnics are taken here and people run around it for exercise, it's a pretty place.  Three times a year it is used to hold annual shows that benefit the people of Halifax as the proceeds are for charity.

There is a dark side to this moor too as Josephine Whittaker was killed here by the infamous Yorkshire Ripper, only yards away from her home.  She was a nineteen year old pretty girl who worked at The Halifax Building Society, one of the very few people he killed who was NOT a prostitute.  He later said he regretted killing her, big of him (NOT).

A few weeks ago we were horrified to see travellers taking over this space.  Not sure of their nationality but that matters not. They all had big cars and very big caravans.  They proceeded to drive over the beautiful wooden edging that has stood the test of time of many years, breaking and splintering it into thousands of pieces.  They then parked and immediately hung washing over the beautiful walls of Manor  Heath and slung out their rubbish, which they must have brought with them from their last stop, quite why is unknown as they left all their rubbish here with us.   What a mess it was.  We will never be sure where they emptied their toilets.  The result was no ball games could be played on this part of the moor and matches were cancelled.  Such a shame as games and exercise is a big part of the school curriculum . Driving past the site looked an eye sore with washing draped everywhere and rubbish slung around and churned up grass.   The police came and told them to leave but to no avail,  and there they lived for a month. They paid  no rates and spoiled  the moor and made  it unfit for the use it was intended for.

The thing is we DO provide a park for them just three miles away in Ripponden but this site is never used by them.  I don't know why as Ripponden is a nice place.  It is not as though they can't  buy a small house as the cost of their very expensive cars and caravans would pay for a house, bigger than the vans they live in. This is obviously the lifestyle they have chosen so there must be a way made for them to pay for the destruction they leave behind in their wake.  It should not be for the people of whichever town they choose to live in to pay for the removal of waste and clean up operation, plus the tidying up and making sterile again the sites used when they move on.

Now before I get an outcry of "everyone has a choice of lifestyle" I totally agree, of course we do.  We must, however be prepared to pay for it and to pay for the removal of sewage and waste.  We all do this by paying rates and taxes.  Nobody gave me land to use for free.  We have a motor home and regularly go away in it but we pay for the sites we use.  Along with this payment money goes out  to pay for the removal of waste and sewage.  We also pay for the land we are using.  Fair play all round I believe.

The mess left behind when these travellers left was horrific, requiring not one but two lorries from our council to remove the mess and then try to repair the damage done to the moor and make it safe for our children to use once more  There is a tip not far from where they were staying, their cars were huge so would easily have accommodated their rubbish so it would not have been hard.  The council did go around regularly to remove waste so why such a lot was left amazes me.

It was with great relief that on the day the court order to remove them they just up and left.  Imagine our horror then when a couple of days ago looking out of our window we saw the SAME  vans  returning!  This time though quick phone calls from local residents had them removed the following day, once again leaving behind the destruction of the beautiful wooden edgings, plus all their waste.  I don't expect this is the end, quite what the answer is I do not know.

I am having a lazy day after having not one but two hospital visits to two different hospitals over two days.  The first one being to Leeds General Infirmary to meet with a great doctor about my neck and the severe spondalitus I have.  No real outcome as I can't have surgery, he said it could kill me but he has referred me for physio so maybe that will help the pain.

Yesterday I went to my specialist hospital in Sheffield.  Again my A Team were warm and welcoming, (it may be to do with the fact I always bake cakes for them)!  Anyway after my MRI, lung function and ECG plus six minute walk test they were happy with me and my heart does not appear to be much worse than six months ago when I had my last MRI, relief all around.  Next  step is all the tests required for trial so screening visit will be arranged for after our holiday.

Must get some work done now as we then collect our Izzy from school.  We must give her huge hugs as she did the best ever in her swimming lesson yesterday.  So relieved as she was a reluctant little swimmer initially but now loves the water and is doing very very well.  I have overripe bananas so I will bake a banana cake and the glut of carrots is calling out to become a carrot and coriander soup. These will be my tasks for the day.

Have a lovely day, the weather is super here today and I hope it is where you are too.  xx