One of my ph friends lives in America and was able to be prescribed the drug selexipag. We are still not to be allowed it in the UK. This particular friend has been very poorly with her ph and she was put onto this drug. When she began this treatment her levels were in their eighties and after horrendous side effects which these drugs give is now happy to report has now gone down to 37. She says the doctors are telling her she is cured of ph and she will be written of in a book! The doctors are calling it a miracle.
Now though I am thrilled for my friend my concern is that here in the UK we were always taught than any pressure in the lung over 25 was considered that we have ph. I think that this is the standard level for anyone worldwide when being diagnosed with ph. My friend will continue on selexipag and hopefully her symptoms will remain stable, It really does puzzle me that the doctors in America treating her are telling her she is cured of ph though. Whilst I am happy for my friend I do not believe this to be so. Many of us have had pressures way higher than hers and dropped even lower but are still not considered to be cured and certainly are not being written up as a miracle in a book. Whilst selexipag does appear to help many with ph it has never been spoken of as a cure, I believe it pushes back the pressures in the lung but if not taken these pressures will continue to rise .
Still although I disagree with the doctors telling her she is cured I just wish our NICE here would approve it for us, When we see how well this drug works in pushing back the pressures WITHOUT needing the Hickman line I am sickened that we cannot be prescribed it here in the UK, NICE considers that the cost is too expensive for the gains we would have. I wish they could read how well my friend is doing on selexipag. I would love to be given it despite the awful side effects. We get horrendous side effects with iloprost and I believe the ones with selexipag are considered to be the same. To get my levels down to one where I had energy again and could do more things would be amazing. I am counting the days to my next study appointment when Charlie (my ph doctor) said we will talk about the line again. Only twelve more days to go. How I wish it was even sooner.
My fear now is that my appointment will be pushed on even further as the doctors strike has an impact on practically everything happening in the hospitals. As I feel so bad these days after doing very little I will be gutted if I have to wait for my appointment. As this is the end of my study appointment maybe it will not result in mine being changed.
Ph exercise classes
My class went well, much better than my last one where my heart rate struggled to get back to my considered normal. Still though it totally wipes me out and I find even the slightest task to be impossible after doing this class, I had to smile though at the end of the exercises and we had our weekly talk. This one was about nutrition. We talked of lots of things, diet, water intake etc and how important it was to try to keep weight stable, One rather large lady sitting next to me had taken a cup of tea after her exercise and I noticed she had taken three biscuits, a blue ribbon, a kit Kat and one I didn't see the name of. When we were being told of the need for weight levels to be lowered if we were overweight she spoke to me in a whisper that she didn't eat biscuits and cake and still could not lose weight! I didn't say anything but it made me wonder if she really did not consider kit kats to be biscuits!
Whitby
As Izzy was away with her grandad in the motor home my son very kindly said he would drive me and his girl Anna to the coast. Tuesday was a beautiful day and off we went. The big trial was trying to park when we arrived in Whitby. I had intended to leave them to climb the steps to the abbey and drive off to visit with my godmother. However due to the parking problems I dare not leave my space as I knew it would be equally as difficult to find another one after my visit with Enid. I walked very steadily along the back street on the cobbles {very hard with ph} and left them at the bottom of the steps. I knew they would be teaching for the pokemon creatures that seems to be so popular right now. I went back to the car, opened both doors wide and with my pillow and my seat pushed far back I spent my time with my feet on the dash board and rested.
My son and Anna just loved the abbey and the history of it and spent a long time inside taking pictures of it. Anna found a concrete "coffin" in the grounds and just had to lay in it! She got some strange looks from people but she certainly will not be the first to do this. They found a "rare" pokemon in the graveyard too were pleased about this.
Whilst we we later having a meal, a very poor one as it happened} we decided we would take another trip out again before Friday. So it was that Wednesday was us setting off again, this time to Knowelsey Safari Park, bad idea!!!!
Safari Park
I thought this was would be great as all I had to do was sit and watch, this would have rested my heart and I didn't need to walk far at all. The journey over was really lovely. I was getting to know my sons girl more and more and she made me laugh so much. It was a long time since I had been here. We had been when my children were small and we have pictures of a monkey on the car. All of us were looking forward to seeing these cheeky chappies. Oh how wrong I was to be excited about this.
When we were in the enclosure for the monkeys and baboons we smiled as we saw them pluck a green P plastic square {indicating a newly qualified driver} from the car in front. My smiles were to quickly turn to horror though as one, then another baboon jumped onto the bonnet of my mini. Both were trying to get the plastic nozzle out of its place and I was horrified. I started to shout to my son and Anna to get them off the car! They were both laughing so loud at the antics of the creatures and at me panicking. They were both filming all of this whilst I was horrified and they just kept on laughing I told Haydn to squirt water at them through the said nozzles hoping it would frighten them, not at all, such a bad move as they both put their mouths over them and began drinking the water. I was horrified as first one and then the other baboons managed to pull out the nozzles and then began to try to destroy the pipes attached. Gosh I was banging on the windows and the kids just laughed louder! It wasn't until we reached the end of the enclosure that both baboons were knocked off the car by the wardens with their big sticks. The damage was done though.
Once out of their enclosure we parked to asses the damage. Two holes where the nozzles should have been were very evident and as we did no know how much damage had been done to the tubes that sent the water to the said nozzles we decided to open the bonnet to take a look. The bonnet was a filthy mess as one baboon had weed all over it and as they are not clean creatures it looked disgusting was their dirt mingled with the wee. Though we tried and tried to open the bonnet only one side would open. When my son googled it only then we discovered it was quite a common fault with the mini, the right side opened whilst the left did not. This left me in even more despair as my concern was would it be safe to drive home on the motorway with the car like this. I was worried that the wind would catch under one side of the bonnet and warp the metal. We went for something to eat after washing our hands which had been all over the mini bonnet and so of course they were covered with the baboons wee.
After eating truly terrible food, and I mean really bad we had a short walk to see the giraffes but my mind was on the car all the time. I was worried about what Colin would say whilst the kids were laughing and saying they were going to put onto u tube the video of the whole experience with the baboons. We got back to the car as I needed a rest and they decided one more time to try the bonnet, HALLELUJAH it opened. Haydn assessed the damage to the pipes and concluded that they were fine whilst Anna looked up on ebay where we could buy more nozzles. This turned out to be so complex I decided I needed to consult with my main dealer. We set off for home after pushing the bonnet back and on arriving at my house Haydn said he really needed to wash the bonnet of the car as it looked so disgusting.
The following day I rang BMW and have ordered two more nozzles from the scrap yard belonging to the company They had got a 2015 mini in for scrap and I could have the nozzles from that one. At a cost of £17 I did well as through the main dealer the cost was £80. They should hopefully arrive today. It will be lovely to then give the car a really good wash. I dare not do it now though as the holes in the bonnet are rather large and at the car wash place they will not take care to avoid them and so all the felt underneath would be destroyed. I will be pleased when the new covers arrive and this debacle is all over and done with
Javea/Xabia
I was gutted to read in the paper that thousands or people have been evacuated from this town in Spain as this is where we had our villa. Our home was built in the woods and we have many friends and family living here. The fires were begun deliberately by youths. At least 20 homes have already been destroyed. I can see the pictures of the helicopters overhead. They have huge water bags on the underside of them. When they need water they drop low and scoop water from the swimming pools. There are also water dumping aircraft busy trying to get these fires under control. It sickens me that such a beautiful town is in danger of having such damage by young idiots out to create trouble. Lives could have been lost were it not for the quick thinking of the authorities who have evacuated thousands of people. I hope the home we lovingly had built and spent so much time in and created many memories is not touched by this but my heart goes out to each and every person under the threat of these fires. The woods would go up like tinder and so sad as the views looking out onto the mountains is so beautiful.
Life is pretty rubbish right now
My condition seems to deteriorate daily. My breathing is getting more and more difficult and we have now got a piece of paper where we write down anything that is not the norm happening to me so we can explain to my specialist. At my hospital visit on Thursday (my local hospital not my ph one) I felt as if I would faint. My blood pressure drops down to low eighties so it is no surprise that I feel so light headed and poorly. This happens even when I am resting in bed so I can't blame it on standing up. Of course we can bet that on the days I go for my assessment study for the final time it will be amazingly good! Sods law.
So another week has gone by in the Ayrton household. We have Izzy again today as the school she attends has a teacher training day. Why they can't have one in the 7 week long holiday I will never know. Colin will take her over to the park to fly the helicopter and I will rest so that I have some strength to attend my ph exercise class again.
I can hear Colin and Izzy in the kitchen as Colin is showing Izzy how to make crisps in the microwave, a healthier option. One very excited little girl is helping her grandad.
So I shall get this posted and wish each and every one of you a good day.
Thank you soon much for reading and clicking the like button when you have done so. My next blog will be after my visit with my specialist hospital so I hope to have something to tell you as to where I go from here.
Warm love to you all
Carole xxxx
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