Update on my trial and other weird things!

The visit to discuss my acceptance onto the trial for tocilixumbab did not go as we planned.  It is always very important when going on any trial or study to be honest and answer all questions correctly.  In this instance I did all that, ticked all the boxes but then told them I have been suffering from a few bouts of uti's.  The doctor taking down all my info went into more detail and said it may be that I won't be able to take part.  The reason being that apart from the uti's I also have yearly colonoscopies to remove polyps just in case they turn cancerous.

Now this drug I was hoping to trial works well for people who are on it who suffer from rheumatoid arthritis without too many side effects.  As for me well......... the medicine lowers the white cell count in the body so people are more susceptible to infections and if you are pre disposed to cancer amd uti's then his would not be great.

We need our white cells, our army, to fight infections so if there is somebody who already has certain issues regarding infections then for their own sake they will not put them at risk.  Still waiting to hear as they are talking to Papworth but I believe this will not be a trial for me.

We did discuss another treatment.  I have touched on it before.  This is where they actually burn the ends of the nerves in some parts of the lungs,  It is not a cure but there is the hope that once they are burnt they stop some of  the hypertension.  I believe the operation takes around an hour.  Only five people have had it in this country.  It is very much a last resort, very new, very novel.

I am certainly too well right now to go down this route.  I have read some people abroad have died about three  months after the op due to sepsis and other things so even if I was allowed it, which I am not, then it wouldn't be for me.

Holiday!

Yeahhh. We leave at 3.00 in the morning to take our taxi to the airport.  Though we rarely take the early flights this time we felt we should.  It means that we can be in and settled by early afternoon and this is very important as we have so many people we wish to see and so many bike rides, mountain walks etc for Colin.  I can't begin to tell you how excited I am to be going back to where we lived.  We made so many really lovely friends and we're fortunate not to have lost them since we left.  Packing is done so we just want our day to go well, sleep a little and away we go.  Bedding changed nice and fresh for our house sitter We just have Izzy to collect from school, always a joy and Colin will take her for her swimming lesson.  

With regard to packing.  I take a very easy option.  It is that time of the year when some of my summer wardrobe gets donated to charity shops, no call for them here now our weather has changed.  So here is what I do.  I get all the clothes I want to donate to a charity shop together, there is nothing wrong with them but will want a change next year, and I take these as my wardrobe for my holiday.  At the end I wash them and donate to charity in Javea.  Saves me carrying them back home and I come home to a wardrobe tidied out ready for winter clothes.

My INR clinic

My INR is very low due to all the antibiotics so my warfarin clinic came up trumps.  I attended the clinic at 8.20 and received my call from the phlebotomist at about 10.00 . She was concerned as to how low it was, changed my dose, asked me to have it done is Spain and then wished me a lovely holiday, and people knock our NHS,  I love it.

This is a very short blog as since I last wrote I have done very little due to hospital visits, two to my local one and then my wonderful Hallamshire.  I missed seeing Gem Cousins but we are sure our paths will cross again!

Now the awful woman that posted comments on my blog has been deleted. Well I hope so.  I deleted her remarks and then a lovely friend reported her to the admin side of Facebook so I hope to goodness she does not turn up again.  I had to smile at my lovely friend Mary who was very concerned and asked it if could be Roy's granddaughter.  Now I know she likes horses, she kept a couple but in fairness to her there would be no way she would post pictures of herself in such a compromising position.  It made me smile though at the thought.  So hopefully this is the last time this awful person will be mentioned in my blogs.

I think the fact I could not block her of my Facebook page is that I was using my apple iPad.  Whilst there is much that can be done on an iPad there are some things that cant and in this instance it only showed about ten people with the name Horseylady.  She no longer has access to anything I write hopefully so I can breath a sigh of relief.

So there it is, very short blog.  Thank you all so much for reading and for clicking the like icon, it means such a lot.  No ph news on here this week but i shall search and see what is on the ph media in my next blog for the newbies, and indeed all of us with ph.  

Warm love to you all

Carole xxx

I was really worried there for a moment.

Just taken a phone call from Papworth research team to ask if I had told anyone about my going on to trial the drug Tocilizumab.  Well the answer was an honest one, yes of course I had as I always try to keep my family and friends worldwide up to date with the news and this was my latest news.  I was concerned that I had broken a confidentiality rule and was horrified at what was to come next.  The answer was that all was fine.  It appears that somebody had read either my blog or post and asked about it at Papworth but they could not say where they knew about the trial and gave my telephone number!  Anyway it is all good.  Yes we are encouraged to speak about any trial we are on and she was pleased that I spread the word about each and every trial.  Her concern was that there had been a breach of confidentiality at Papworth end of things and this was not the case so everything is OK.  Monday is the day for my right heart cath and then holiday and back to begin the actual trial.

Just  beginning to get myself together again

We had Izzy for three nights.  What a delight she is but it is all go when this child is around.  She arrived bathed and ready for bed on the Friday when Danielle and Chris dropped her off and immediately began teasing grandad and getting him to play games with her.  She is so good but always busy busy busy, you know how it is with children.

Saturday we decided to take her to two museums.  I am hoping she learns to get to love these but not a chance right now. She refused to go into the rooms at Bankfield Museum as it was "full of dead people".  Despite us telling her again and again it was just  huge dolls dressed up she would not have it.  We went on to the toys of yesteryear.  Made us both feel old as most of them were from our era!  These amused her for all of two minutes and then we had to move on again and so it continued.  She did like the dressing up room where we both donned hats and grandad took our picture but that said, enough was enough so on we moved to Shibden Hall, home of Ann Lister and very beautiful it is too.  I began to go "off" in here and had to stop a while as the pain in my chest made me feel so sick and faint.  A short break later and we continued to the car where I said I would be happy to sit whilst they went on the train and the swings.  Izzy held my hand to help me back to the car and looked to be very concerned.  After a rest I came round again so all was well.

Sunday was party day for Izzy and I took her to her friends party and stayed to watch the magician, very good he was too and then on to buy her new school boots.  The two of us then, after bath etc went to curl up on my bed and we watched a film together, this is cuddle time with grandma and then off she went to sleep.  I must say it was hard getting her ready for school the following morning as I knew we would miss seeing her smily face and watching her skipping throughout the place.  I am sure that we will have her soon as the move to their new house is very imminent and we will come in handy then as babysitters.

PH exercise class

This was my penultimate class and so I had to go a few minutes earlier to have my assessment done before the rest of the class arrived.  They were thrilled as to how my times and levels of  being able to do or not do things had improved.  I really did not have the heart to tell them that it is just the nature of the beast for us.  When I went for the initial assessment it was not a good day so my level of being able or not able was not so good.  Monday was a pretty decent day as far as living in the ph world goes so I was not surprised at all.  They are a lovely team and I shall miss them very much.  I have signed on to Breathe Easy to see if that will help me at all.  I also met two people who I like very much and we have exchanged telephone numbers so  hope to keep in touch and see how they go on.  One of these ladies knowing how much I love lemon meringue pie, though rarely have it for calorific reasons had made me a pie!  How lovely that in a place we are all at due to health reasons I made two good friends.

Implanted pump study

http://www.phanews.org/news/implanted-pump-delivery-study#.V_6i1PS6t_o.facebook

Gosh, this sounds incredible.  Instead of changing and re filling pump every 24 hours with all the risks that come with it this one appears to only be filled ever 47 days!  I wish i could be offered that instead of the old ones we have.  Looking forward to this study moving forward and being available to all of us on iv lines.

Haiti

The level of damage and destruction done here is so horrific and the death toll continues to rise.  I still never found out the fate of the young boy we sponsored here for five years between 2006 and 2011 after the earthquake around six years ago. I continued to send my sponsor money but sadly never heard if he survived this quake or not.   I was surprised to read in the Independent that they are urging people not to give money to the appeal by the American Red Cross,  One would wonder why but the answer became clear.  The trust in them is low due to the 2015 report that shows a lot of money given by people such as us has been squandered.  Well I have news for them, they are not the only charity that squanders money.  I have refused to give donations here in England as when I see the size of their palatial buildings right in the heart of London I can see exactly where my money would be going.  It would surely make more sense to build or rent buildings out of the heart of the big towns where it is certain costs will be high. Move away to the edgers of the cities and obviously dave money on the land to build and the rates etc.  Surely as a charity the first thought should be about how much we can get to give away in aid, not how imposing can our offices be.  Of course there may be a perfectly valid reason for them taking up prime expensive space in the big cities but I cannot think of a single one.

Looking at house designs

Not that we are getting very far just yet but is is exciting to look, indeed we were told to by our architects we must be looking so as to give them an inkling of what we liked and what we loathed.  We are sill debating log burner in the house or just the one in the cabin outside.  See I hate the tiny log burners that some have, it is all a matter of preference and I like mine to be quite big taking up all of the fireplace.  I do not mind the hearth in front but I do not like where there is a space at each side.  As we are maybe going eco friendly though this may well be overkill.  Maybe we just decide on a different fire as after all we will have a log burner in our cabin, the type with a pipe showing that leads to the outlet.  I do find myself gazing into kitchen showroom windows just to get an idea of style etc.  I think we will have to really sit down and really consider lots of things we want in this house and begin making lists.

I wish I could be more like the young ones, more laid back.  Danielle and Chris do not seem to be too concerned with any of this, they just know they will sort it, they will find the right kitchen and bathrooms they want as they want to change the ones already in.  I am sure they are not stressing about this at all.  They are not even worried about being given a date to move at the last minute, me I stress! Aaaahhhhh what wouldn't I give to be that age again and know that I had the ability and the strength to just go with it.

Aberfan disaster

I cant believe that this happened 50 years ago.  For those that do not know the story October 21st marks the 50th anniversary of the terrible disaster that took the lives of 118 children between the ages of 7 and 10 and also 28 adults.  The children were waved off to school as usual and this school was close to the coal tip from a nearby colliery.  Not long into the morning, in fact just 15 minutes after the register was called  the tip collapsed sending down over 100.000 of waste and this engulfed the school and a few surrounding houses.   The children that were not killed instantly were smothered.  It took a week to reach some of the dead.  I well remember the horrific sight of row upon row of coffins laid out next to each other.  To make this even more sad is the knowledge that just a few hours later they would have finished for their October break and the school would have been empty.

As I reflect on this it makes me wonder what those children and teachers would be doing now had this catastrophic event happened.  More generations would have been born, more lives enriched by this.  Sometimes life is incredibly sad but the people of this village pulled together  to form a support group called Aberfan Young Wives Club. In the depths of despair they reached out to each other and gave love and support and that club still exists today.

We too reach out to each other and offer knowledge, hope and support but I pray this and sites like it are no longer needed in the near future because a cure is found that makes us redundant.  

What is with the clowns!

In the news the craze that began in America of the scary clowns has reached us here.  I feel they already have two big scary clowns already in the form of Trump and Clinton so why do they need more.  We too have many in our parliament here in the UK, way too many.  Many people have phobias regarding clowns and to deliberately target young children with scary faces means that now even the big smiley faces seems to be so cruel.  Here we are beginning to fine them around £70 for each one found but our police force has more important things to do than to catch them and fine them.  I hope it all goes away after halloween, though I doubt it.  Once people realise they can have an impact, even a bad one then these trends hang around awhile.  I hope my sons girl is OK  She has a real phobia and lives in London where we are told there is quite an influx of these spooky costumes.  One idiot even ran after children with a real chain saw!  How very cruel is that.

OK enough said, sorry to my American friends, not really knocking your candidates for the upcoming election but the debates I have watched in the middle of the night seem not to be about politics but to be about point scoring.  I hope whoever wins does a great job for you in the coming years.  I love America and its people and wish them all the best.

Met up with Marc and Mary Dyer this morning for a coffee.  Mary is doing OK, one or two things going on so back to clinic in a month but still ok.  She says thank you to all those wondering where she is.  She just needed a break from Facebook to concentrate on her studies for the time being and wishes you all well and says thank you for thinking of her.

Go well each and everyone of you.  Thank you again for clicking the like button and also or those that send a comment.  All gratefully received except for one I found only this morning on one of my earlier blogs .  It said something like this.  This lady lies, rubbish and was signed by horsey lady.  Now I know some of you will look her up but trust me you shouldn't,  She is a disgusting low life creature, not on my friends list for sure and the pictures are terrible. If you ever see her on my blog again believe me I have no idea who she is or where she comes from.  All I will say is the horses butt looks better than her face.

Warm love to you all

Carole xxx                

Please give us a break!

I had three "good days".  Good for a person with ph can be likened to somebody without ph that you think maybe, just maybe this flu is going away, its on its way out.  It is still tough to do things and the lethargy is very much still to the forefront but you manage to push past this and get a few tasks done. So there I was living in cloud  cookoo land and feeling that maybe my ph exercise classes were helping and I would not go back to the bad ph days.  Not a cat in hells chance as I realised on waking this morning after the strangest dream.( more of that later) and the knowledge that yes, here we go again, another bad ph day.

Typically today is the day that we are having a family meal. Why couldn't I have just been granted another good ph day.  My daughter is going away for the weekend with her guy for a well earned break and we are having Izzy so I thought it would be nice to have a family meal and to see where we are all up to with regard to our house sale and land.  I have planned a very simple meal, easy to cope with as Colin is doing a school run for Phoebe and will not be back until 6.00.  I need the meal to be at least almost ready for when he returns.  Chicken and ham pie is the order of the day with tiny roasted potatoes and vegetables.  The pie is now prepared, it just requires cooking, veg is prepared and the potatoes cannot be started until 40 minutes before serving so they are a last minute thing to deal with.  So now I need to rest, will think about dessert later. 

 We are beginning to line things up for us to do with Izzy starting with a concert on Friday night to see her cousin Phoebe perform singing and dancing.  Izzy will love this anyway as she enjoys concerts but with Phoebe being in it then the will be the icing on the cake.  As I don't "do" nights very well these days I will stay home and rest.  We have not got around to planning the other two days we will need to get together and have discussions and of course check out the weather.  So busy times ahead and I now need for my ph to give me a break family time is important so go away please!  

Strange dreams

I read once somewhere that we do not dream in colour.  I know for sure this is not true as I mostly remember my dreams and they are always in colour.  So I woke this morning after having a strange dream. I was with Mary Dyer, another ph patient and for some reason I was taking her to look around the house I lived in with my children until I met Colin and then all changed.  Now  loved this house as we had it built for us, we added on rooms and bathrooms over the years as the children grew.  I remember being excited in my dream as we walked to the door.  I noted the red of the drive and that the door was lovely and clean.  We entered into the kitchen and was invited to sit down immediately as lunch was ready.  This was a surprise as we were not expecting to be fed.  On looking around the kitchen I noticed that they had changed the units and they were an eclectic mix of colour and design, it looked amazing.  First course of this meal was salmon mousse and as  I was eating it I distinctly  remember thinking that I would not be hungry when I woke from this dream!  The second course was cumberland sausages with a rich onion gravy, I did not see what was to accompany this  as I never lifted a serving  dish lid.  The man that owned the house said to his wife he would take "this" out to the van, "this" being two huge slices of pork that he carried out speared on just a fork, no plate.  He was wearing a lovely crisp blue and white striped shirt.  

Unfortunately before I had a chance to see round the rest of the house I woke up!  I knew as soon as my eyes opened that it was going to be "one of those days"  With wobbly legs I managed to make the pie between resting at each stage of the making of it.  After an hours rest I decided I was not going to waste  even more time out of my day so began my blog.  

Statins

I was horrified when my doctor rang and told me that as a result of blood tests my cholesterol was 6.4.  As a result of this she wanted me to go on a low dose of statins,  20 mgs and see how I get on.  I instructed her to first of all ring my primary carers for my ph and discuss with them first before I began this as I am never sure how one medicine reacts with another.  The end result is I am on this dose and then will take another blood test after three months.  We are both a bit shocked that my cholesterol is higher than Colin's  being that he is the one that eats cheese and butter and dairy products, I rarely touch them.  If we have red meat once a week it is the most that we eat this.  We use olive oil too on salads etc so we are perplexed.  Maybe I am just one of those people who have this in my genes, who knows. Anyway there it is, yet another tablet to add to the mix of the ones I already take, it does make me wonder sometimes how it can be that we can take so many tablets and not somehow be poisoned by them all to the point of death.

In trouble again 

I was told off yesterday by a member of the support group who said that she was not receiving as much sympathy as she expected by the group as she was very poorly with different problems to cope with.  At first she had my sympathy as I care very much for each and every person we have on our support page but after sending a few messages back and forth I began to realise that this was going nowhere,  I was supposed to get onto the site and tell everyone to give this person more sympathy, she was cross that I had asked details of her diagnosis to begin with and so it went on and on.  In the end she said she was leaving the group.  I explained that there was nothing  I could do if people did not respond to her posts.  If she had received abusive messages or bullying then that would be different.  As she went on to tell me how sick she was, and yes she does have different conditions I needed to tell her that we ALL have problems on here, we are ALL very poorly and we all have our own problems to deal with too.  As she had only been a member for around three weeks her name would not be recognised yet by everyone and to give it time.   I begged her to stay awhile and see how it went but no, she has left us.  

Of course it appeared that it was my fault as I did not monitor her post closely enough to see how people responded to her.  Now with the best will in the world we have over 1600 people on here.  I think Paul and I do a good job all things considered.  As others on here that admin ph support groups we that do this also suffer from ph.  We do not just spend a few minutes a day on this site.  We spend a big chunk of our days adding people to the support group, sending messages asking for details of those wishing to join, we take pride in trying to sort out any problems that do come along but we too have ph.  We have our duvet days, we have all the appointments that come with this disease.   So with the best will in the world we cannot monitor each and every post and then monitor each and every response.  We trust that where there are problems they get reported to us and we try to deal with these problems fairly, listening to both sides of the argument.     So it was that she left the group, I had two minutes of regret but then decided that I must move on, I was not got to get poorly stressing out when she clearly had made her mind up.  Very sad to lose her but we all want something from this group but I feel she expected just too much from us all.  

Down and out for the count

I left the blog yesterday as my condition deteriorated as the day progressed.  I was gutted to have to ring my ph exercise class and say I would not be attending.  I know I would not have been able to do a single exercise and I love this class.  I sat in the chair feeling terrible.  

Time to collect Izzy from school, something normally done by grandad but he was busy collecting our other granddaughter from school miles away. It would have been irresponsible to drive my car so opted for my mobility scooter instead.  Sods law that when I took it out I realised it was low on the battery power.  Still I just hoped I could make it to school and back.  Izzy was happy to see me and jumped onto the scooter with me,  I explained the situation about having not much power and she was happy to keep checking the battery indicator for me all the way home.  On arriving at the garage and parking the scooter she told me to hold onto the walls and she would open all the doors for me.  Lovely but sad too that a girl of six needs to take care of grandma.

The meal went well, everyone enjoyed it and I even managed a tiny piece of the pie before I one again took to my chair.  Eve when not feeling well family can make you forget yourself for a while.

PH news

This link came up on my newsfeed and I think it says it just how it is.  I believe for the newbies it would be great for you to show family and friends as it explains all.

Every Breath Matters with Pulmonary HypertensionGet to know about pulmonary hypertension, with this video featuring patients and team Phenomenal Hope as they take you in a journey through their...pulmonaryhypertensionnews.com

Sad sight to see

I attended my warfarin clinic today and was sickened to see a young, very expectant mom stood outside the maternity unit wearing her dressing gown and slippers and smoking.  Now the very fact that she was so young told me that she obviously knew of the dangers of smoking for her own health but to put her baby at risk made me feel very sad indeed.  Enough said.

Time to go as se have an appointment in town today.  Go well and warm love to you all.  Thank you for reading the blog and a huge thumbs up to those that click like .

Carole xxx