Amazing PH News

My ph hospital visit astounded me!

This was a return visit after the ferinject study to see if I performed better, worse or the same.  My answer was the same and it appeared that the results available at this time showed that too except for a small change of my heart. However I wasn't there just to discuss the study but to talk about having the Hickman line fitted again as my condition deteriorates.  

I bumped into Charlie the day before my end review who said it would be David I would be seeing as he would be working over at the other hospital.  I was a little concerned about this as David was one of the doctors who did not want me back on the line so was a bit tense.  I need not have been as it happens.

My MRI showed very little change, a tiny margin for the worse and though my pressures were rising my heart was coping quite well.  However as we talked about where I was going next in my ph journey he dropped a bombshell that really made us stop and think.  Before I did the study for the ferinject I had been waiting for another trial called Transform Uk an open label study of Tocilizumab.  There are to be 21 people across the UK on this trial  At that time it was not available to us so I switched to the ferinject study.  Now I have completed it I can, if I wish, join the study for the tocilizumab as we are now allowed to trial it. I need a rhc and many other tests but if all goes well I should be on this trial at the end of October . If it seems my breathing gets worse he will take me off the trial and I will immediately get my Hickman line inserted and begin the iloprost treatment again.  I will be the first on this study from Sheffield so if anyone else across the UK  who reads this blog is on this study please tell me how you are doing.  

We discussed another study I had been on and completed and the results are out now but at this stage only to the specialists who were part of it.  For that reason I cannot yet divulge the name of the study or the meds but I can say that it proves that the medicine helps patients with ph so yeah!! By taking part in this study, there were only 20 in Sheffield on it has helped in the developing of another drug that will one day be a player in helping to push back ph.  It made me feel proud that my small part in agreeing to test the drug will lead to its use for many ph brothers and sisters worldwide.  

Whilst I was in his office he told me of another trial, only one person has had it done at this time.  This trial ( and he said I was not ready for this ) actually burns inside the pulmonary arteries to see if they can shrink the blockages and so aid breathing.  As it has only been done on a pig and one human we all agreed this was a very last resort.  

On one of the trials I did I developed dreadful neuropathy but I insisted continuing until the end.  The result of that trial showed many people on the high dose such as I was on did get neuropathy the same as me but that at a lower dose it was tolerated well.  My neuropathy has just about gone after two years so I am now told I can gradually wean myself of the meds for this slowly.  It will be good to get rid of one of the medications I take.

We discussed lowering my meds as they appear to give me a very low blood pressure ergo the dizziness and tiredness etc.  We all agreed though that as the pressures in my lungs are already rising more and more even with the drug then to halve this med would mean my heart would be even more under pressure, 

Selexipag

Again this was discussed and David said he was going into another meeting in two weeks with all banners blazing that we should be allowed selexipag in the U.K.  He is very disappointed at NICE and their decision  not to allow it us yet.  I know he will do all he can to push for us again.  It is going to be interesting to see how he gets on, who knows after my new trial ends I may be allowed selexipag, something to hope for.  

On leaving the office after being with David about one hour we bumped into the very lovely Paul Sephton, he is the ward manager,  A super guy he often had us laughing when he would come on the wards.  He came over to say hello and told me he had been at a conference with hundreds of others and lo and behold who should appear on the screen in front of their eyes  but me!  He pointed to a colleague and said hey look, that is Carole Ayrton.  I was talking about how it was ok to feel scared when first diagnosed but there were many people going through the same journey and through support groups we could become strong etc.  This is apparently going to all centres that deal with ph and will be shown at all conferences.  I as so pleased to play some part in supporting the newly diagnosed and helping them come to terms with their illness. 

So our visit ended with us saying goodbye to Mercy, my trial coordinator, and that I would be seeing her in a months time.  This  time I shall  be staying in a better hotel, one with lifts, the one  I have been staying in has no lifts so can be a struggle with stairs. For these trial visits we do not take up the NHS beds.  I shall continue to have Dean, my designated taxi driver to take me to these trial sessions so we shall see what happens on this drug.  All in all we came away feeling satisfied that we had covered all the options available to me and that we all felt the new trial was the way forward.  I can't think first hand of how many trials I have taken part in but it is a few now and the care I have taken of me on these is second to none.  I also had an hello from afar from Professor Martin Wilkins from The Imperial College in London.  He did some testing on me at the Imperial and always says hello to me via any of my team when they meet up.  

I was also deemed fit to fly so hopefully  I will have my study visit, sign all the forms, go on holiday to Javea and return for the right heart cath and then begin the new trial.  Happy days. 

Idiot

This being me.  We had discussed and dismissed my halving my dose of Sildenifal. I take the maximum dosage.  Just to see if I would still get so lightheaded if I reduced the dose I halved one and took it.  Bad call.  Within minutes it took effect in a bad way.  I think that as the plastic coating around it was now only on half the tablet where I had split it the medicines worked in a different way.  I walked so strangely and my talking was rubbish,  Colin could not understand what I was saying.  I remember very little of the next few hours.  Colin put me to bed with my mobile at the side of me and the landline.  I was to remain in bed whilst he took Izzy to her swimming lesson.  On his return he told me he had rung me to check and I was still talking weird.  I can't remember this phone call at all but the strangest thing was yet to be revealed.

I don't eat chocolate as many family and friends know. I woke up when Colin returned home and saw at the side of the bed a chocolate wrapper bar and my mobile was full of chocolate finger prints and the bedding had chocolate on it.  I have absolutely no recollection of getting out of bed, going to the freezer where chocolate is kept, walking back to bed and eating it.  My mouth had no taste  of chocolate in it and when I brushed my teeth there was no chocolate remnants  so what happened, this remains a mystery.  I do not believe I ate it and my bed had loads on it but why did I get out of bed to get something I don't like. At one point we both believed I may have had a mini stroke but we have dismissed that idea and put it all down to my halving the tablet.  There is a reason our tablets are coated the way they are and my halving it and so exposing all the meds at the same time had affected me badly,  I shall never do this again, ever ever. 

Exiting Times Ahead

I have hinted a few times recently that I will shortly be telling you something and at last I can.  It may not be exciting to many of you but believe it for me this news is the best.  At last we are getting sorted with my wish to have my own garden.  We share one now and though very beautiful I really wished to be able to sit in my own in all weathers and breath in good fresh air.  This is going to be happening thanks to my daughter and her partner Chris.

Danielle and her guy are buying a house in a beautiful area with amazing views.  Now this house came with a plot of land attached that was also up for sale.  Currently being used as an add on to the house garden Danielle asked if we wanted to buy it as it has outline planning permission to build.  Wow, another opportunity to help design our own place to exactly how we want it to be.  I did this before I had children as we did a build a house in the allotments attached to the old village school.  My children grew up happily in this house until I married again and moved.  We then had the villa  built in Javea in Spain so this is certainly not new to us.  We now have the opportunity again to build exactly what we want.  We have both said we want a build with a bit of a twist to it, a house with oooomph!  I am so excited.  It won't be big, the plot is only small and neither of us want a big house now, just three bedrooms and of course bathrooms and a study is all we need. I want a kitchen diner and a lounge.  Ideally I would wish for an overhang to the roof with decking underneath so I can sit under it in all weathers.  This may not all be possible we shall talk to the architect.

The house Danielle and Chris are buying has a bedroom on the ground floor with an en suite. If for any reason I am on my own for a few days I can stay in this part of their house as no steps are involved,  Another great thing about it is that there is only a gate seperating both plots so Izzy and Harrison can just run backwards and forwards between us.

This makes me even more determined to live, to push back the darned pressure levels in my lungs.  I believe firmly that the hope we were given about a real cure from Papworth will be with us to trial at the end of 2018 so another goal to reach.  We all need goals in our lives and this is mine.

Our builder said he will be available to build this house in spring, perfect as we need time to take down two trees, one diseased and one the planning office has agreed can come down if we replace it with another one, no problems with that.  Then to talk  to the architect and tell him what we want, plenty of design and planning will be going in here before that as we need to put our own stamp on this house.

So all in all it has been an interesting week for us here and about to get even more interesting.  I will let you know how I get on with both items.

Thank you again for reading this blog, you know I have said before it means so much and thank you too for the likes.

Have a great day, I am going to my ph exercise class!

Warm love to you all

Carole xx