A little bit of this and a little bit of that

Well what a week to has been for progress into the treatment of ph.  There are numerous trials coming up or ongoing.  One is for a drug already in use for rheumatoid arthritis.  Another hopefully coming out to trial is a drug that sits in the lungs all day as opposed to the inhaled one we now take that must be administered up to nine times daily.  What a relief this one will be .  I was on that one for three months and though I did get used to it I must admit it was a drag to carry the things needed to administer this drug around with me at all times.

It seems to me that everytime I open my Facebook ph page there is something of interest to read in the development of finding or funding new drugs and treatments for us all.  I thank my lucky stars that at last the world of research has opened its arms to our condition and is working so hard for us.

http://pulmonaryhypertensionnews.com/2016/01/20/proposed-pah-drug-delivery-system-allows-controlled-release-medicine/

Our table arrived here this week, well not actually ours but one just like it from the shop along with a huge bunch of flowers.  Still no idea at all as to how long ours will be but at least we are sorted out now we have this one.  We managed to go and get some protector for it as we knew we were having the whirlwind Izzy for eight nights.

Friday was a hectic day.  I was going into Leeds to meet up with my son.  I don't know quite why or how but I always end up going shopping for him food before we meet up.  It is not as though he can't shop for himself but it is just something I do.  I think it must go back to the days he was at Uni and was so short of cash.  As a mom we always worry about our children.  It is no different now and so off I went to the supermarket to bu him plenty of food.  He went through a spate of just getting ready meals from M and S and this concerned me deeply.  However he is back on track now cooking good wholesome healthy meals from scratch so it was a delight o go around picking up fresh meat, fish and veg.

On returning home I was pleased to see that Colin had our evening meal, a new recipe, in the slow cooker.  It looked very tempting and as I had not eaten a thing except a banana all day I was so looking forward to have a very early meal, just the two of us before he hurricane {Izzy} arrived.  I thought it would be nice to have this out of the way so we could have a pleasant talk with Danielle and Chris before they headed off for their skiing trip leaving us with sole charge of Izzy. This was not to be however and I was gutted to hear the oh so familiar ring at our doorbell.

The ring was from our neighbour 87 year old Roy.  I love Roy dearly and we do lots for hm as indeed anyone would.  I had been up the night before to take him his second batch of fresh soup, this one being broccoli and stilton.  I knew he was ok as I had seen him Friday morning when I went up to make his complan drink.   I had hoped that we just had this small amount of time to ourselves as he knew our family would be arriving.  This was not to be.  I got up off the bed and we went to make him a drink.  His request this time was for us to find him the perfect trolley for his bedside.

Now this doesn't sound too onerous a task does it but indeed it WAS.  The height was important, it must not be or even look like a hospital bedside table.  He wanted a drawer in it but it had to have plenty space underneath to stand his bottles of water, it had to have a lip to stop things from being pushed off the edge.  Oh how hard we both looked, every site we looked a nothing was quite right.  It took one and a half hours before we found one that would suffice.  In the meantime our lovely meal we were both looking forward to was put on hold.  Whilst he was there my daughter Izzy and Chris arrived.  Roy sat through our talk of her homework etc and as he is deaf and his hearing aid was not working he spoke over our conversations time and time again  I was very very frustrated as this time with my family was taken up by Roy.  I sound a really whinging person but I am honestly not, all I wanted was a bit of time alone without him.Normally I love to see Roy but I just wanted this space for US!

He left after around two hours and as my daughter had to leave not long after we got very little time to discuss Izzy and the things that needed to be done.  By this time I was past caring about food and quickly just grabbed a piece of chicken from the slow cooker minus any veg as they had not been cooked then.   I shovelled it down with no appreciation just the knowledge that I needed to eat.  By this time it was 8.30 and Izzy was way overdue her bedtime.

I went to lay down by the side of Izzy and she asked me to make up a new story.  The one was very easy and it went along the lines of when Danielle and Chis left we discovered Izzy missing,  We searched and searched  for her to no avail. Her mom had already gone to France on the plane.  Colin in desperation flew over to their hotel to tell Danielle in person and he was given access to their hotel room as though their cases were there they had gone for food before unpacking.  As he sat on the bed he heard a thump coming from a suitcase he opened it up and there was Izzy!  When the story was finished, because of course it was filled with much more happenings she howled with laughter.  She said that it was a fabulous and funny story and she loved it!

Saturday and I have written a note to school to say that since she Izzy began there at the end of September she has lost three cardigans and one sweat shirt, all with the logo of the school and all marked with her name.  I have asked if they can send a letter to the other parents to check their childrens clothes.  At this rate it is turning out to be a very expensive term.

Today she wanted to look through her memory box, not our cabinet of memories but the box where I put in the journals I write her of her life and things that have significance to her in these boxes.  She loves seeing the teeny tiny clothes she wore for the first six weeks of her life, she was so tiny.  She had a ball with all these precious things surrounding her.  I now want her to make a card for her Uncle Haydn's birthday so I can send it off along with ours.  I have put everything back where it belongs and she is now playing with grandad where they ae driving to a park and taking the baby for a walk.

I had the pleasure of seeing and holding Archie for two hours!  I never put him down.  He now weights 6lb 4 oz and our Jessica and Brett brought him up to our place so  I could cuddle him.  The house though sill damaged by the flood is getting sorted, time will be needed to complete it.  I never wold have believed I would sill be around to see a fourth generation, me being the first, in our family.  Such a wonderful time I had and Colin took many pictures.  Cant believe this little chappie hit all the national papers and news rooms.

Parris Kelvey has been very poorly with a chest infection and was admitted to intensive care unit for treatment.  After many antibiotics, c.pap machine and oxygen daily she is feeling much better.  I am sure we all wish her a speedy recovery. Very scary time it must have been for everyone that knows her.

Coughs and colds are doing the rounds again.  I have not been able to keep myself away from people so I inevitably came down with one.  Fortunately mine was not a bad one and a day resting up with plenty fluids and paracetamol sent it almost on its way.  It is a time we need to be aware though as what is "just a cough or cold" to a healthy person can indeed even lead to death for us.  I always carry  around with me a bottle of anti bacterial gel and I rub my hands with it before ever using a supermarket trolley or handles.  This tells us we are guaranteed to be infection free for two hours.  I figure it is best to be safe than sorry but unfortunately we cannot help breathing in the air of people infected with a cold or cough.

I was so gutted to read in the papers today of the death of a Swedish asylum worker who was allegedly killed by a 15 years old migrant in the centre where she worked.  I am constantly opening my paper to read of the atrocities done to girls, groping and stealing etc by some of these people.  This gives a bad name for all the ones who are honest and respectful in their dealings with us.  I for one would round them up and send them back to where they say they are from.  I know they all throw away their papers and we have no proof but if they say they are from ..... and need asylum I would send them back.  If we or indeed any country are good enough to take them in, and indeed it surprises me as so many are young men with no family with them, then they need to learn that if we are not treated respectfully then off they go back to the atrocities they say they have left.  Though they report they have so many horrors to live with in the country of their birth surely we need to protect our own people in the country of their birth too.  Sorry if you disagree but I get so angry to see the way some of them think they can treat us.  For the many that are respectful I am sure they too are horrified that the countries willing to take them in are so badly abused.

Started on my head at my ceramics class, previously called pottery!  How I love this, it is amazing to see this come to life.  It is actually a caricature and I am well on with it though I need to decide on earrings, scarves and hair etc.  I could have stayed all day such was my enjoyment of doing it.  There were frustrating moments too of course such as getting the mouth how I wanted it and the eyes as I decided on a slight tilt of the head so this of course impacts on how the eyes are set in the face.  Cant wait to show you this when completed.

Right, must get on with cooking the dinner for later tonight.  Hope everyone stays well.

Thank you so much for taking time out of your lives to read my blogs.  You have no idea how this pleases me.

Carole xxxxxx

MUST WATCH - CURE COMING CLOSER

I have watched with interest the videos posted by Kath Graham and on the news on our television here in the UK. about the belief they have a cure in the offing for pulmonary hypertension.   I did post a couple of blogs a few months ago and a video from last year about this drug. So it was with delight I opened my Facebook page after a couple of days away to see another news bulletin and another video with an update on this saying we have funding in place now to move it further forward.

If I am fortunate enough to be around when they begin trials I have been told that I shall have the chance of trialling this new hope of a cure. I still believe that I will be around and will trial and will be cured. I have always said I won't die of this disease and so I remain strong in my belief. Now I know I have been criticised for "blathering" on about a cure by somebody who believes it won't be around anytime soon but I for one prefer to listen to the researchers and specialists who believe it will be rather than the sceptics who prefer to say it won't........  which camp are you in, a pessimist or an optimist regarding the words of the researchers?   I would love some replies to this blog.

Just returned from a couple of days in Whitby and what a lovely time we had.  Michael our friend who came with us enjoyed himself too which is lovely as he sadly lost his wife a few months ago so it was so nice to see him smiling and laughing, if only for a short while.  We can't know how he is behind closed doors but I am proud as to how strong he is being.

We went to Sandsend whilst we were at Whitby to see the 7 million pound project underway to build a defence wall as the road is in real danger of slipping into the sea.  We talked to some of the guys working on the plant machinery.  Everyone was well educated in the job they were carrying out and to our untrained eyes it all seemed to be going along very well.  We shall see as we shall return in six  months when the job should be completed.

It was so nice to spend some time with my godmother as this was the real reason for our sojourn up North.  She looked well which pleased me though of course incredibly sad to have lost her husband of 66 years.  Colin and Michael were able to help her out by putting a blind up for her and she was so relieved about this as it had been playing on her mind,  As somebody whose husband did all these type of jobs around the house  and  then to have lost him of course all these tasks small though they may be loom large in her mind,  It was lovely to be able to at least relieve her of this task.

My godmother bought me a pair of beautiful jet earnings.  I have always loved this mineral and it was made popular by our Queen Victoria who loved this and had many pieces of jewellery containing jet made for her.  These earrings will always mean so much to me now as I will never wear them without thinking of her.

I am posting this very short blog for one reason.  Lots in the UK on Facebook will have seen the video and the newsreel from yesterday.  Lots in America and others world wide though won't so here is the attached news link and video for your information:-  

https://www.bhf.org.uk/.../breakthrough-in-treating-rare...

Life is for the Living - my transplant story

Now I have a mountain of washing to catch up with so I shall talk nicely to Colin in the hope he sends this blog out for me

Keep well everyone.  Carole xxx

Another trial. Let's hope it works!

My hospital visits post trial drug are now over they have decided.  Instead we have discussed other options as my levels are rising and we want this to stop!  I was so surprised then when I spoke to my specialist who said there was nothing else for me with the already established drugs.  Other than going back on the line which right now we do not feel I am bad enough for that.  He saw by my notes that inhaled iloprost did little for me despite my being on two other therapies.  I was a bit gutted it was fair to say and then he went on to say.........

We have three other trials yet, you could start on one!  Yeah.. He wants me to wait for four weeks and then go back for tests and talks to see which trial will be the most favourable one for me. We know there are certain criteria to be filled before we can do any trialling.  So we shall see.  On talking to Paula one of my ph friends she discussed a particular one I may be interested in.  I promptly forgot it once I was home as I was so exhausted.  So it was lovely then to open my Facebook and to see that Paula hadn't forgotten and had tagged me into a post about this particular trial, I am not going to post which one as I don't want to rock the boat, after all we have not discussed any of the trials yet with my ph doctors but I promise you that as always when I have spoken to them I shall post and keep you all  informed.

I am so grateful to Paula for sending me this info.  She herself is trialling and has been trialling a drug for three years.  She seems to be doing pretty good on it and it may well be that it will get licensed.  I do hope so.  The more the merrier in the world of ph.

Alan Rickman

How I loved  this guy.  I went to see him when he did something called An audience with Alan or words to that effect.  He sat on the stage and we sat in the auditorium and we could throw questions at him and he replied.  One thing he did state though was that he wouldn't discuss his personal life other than telling us where we could get the best curry in Leeds!  He talked about his acting career and I was so thrilled to be almost touching him.  He had so much charisma and charm.  So I was gutted to read today on Facebook he had died.  I wrote on many of the posts how sad I was but then I decided to see online if it was in the paper.  No it wasn't , not right then.  I then read that it was a spoof, yet another of them saying somebody had died that had not,  As was the case with David  Jason to oh the relief!  He wasn't dead!  Then I read with horror that indeed yes he was, the spoof was so wrong.

How I wish people wouldn't post spoofs, why do they do it, it certainly doesn't make sense to me.  So we have lost another great actor.  Such a huge loss to our world of theatre and television.  An amazing guy who played many different rolls,  R.IP. Allan, you will surely be missed. His wife must be very lonely, they had just married after being together over 50 years. Had no children.  He kept a low profile in his private life.  My thoughts go out to her and to all who loved this guy.

Change in organ donation 

At last the government is doing something about people dying and their organs with them too.  I was always an advocate for the opt out of donating organs, seemed sensible to me.  However our government felt otherwise and we carried on with the total waste of life through lack of donated organs.  Now though some sense is to be had of death and the sheer wastage of good healthy organs as the government is passing a bill through whereby if a person carries a donor card then they go ahead and the family cannot object.  Up to now despite a donor card being found if the family objects the donor is not listened to.  Surely at last sense has prevailed and we listen to the last wishes of the donor.  I feel sure that when the grief has subsided a little even those that would have objected will find some comfort in knowing part of their loved ones is working strong in the body of another .

Snow snow go away!  

In this case ice but the snow is sure to follow.  I wanted to try a small walk as my breathing has improved a lot since coming off the trial medicine. All kinds of things go through your mind such as ..... has my breathing improved a little because the trial drug pushed back my levels, even though it made me feel terrible? Or maybe it is just that I could do very little once the trial drug kicked in that now it is gone anything feels better than I did whilst on it.  Who knows but away we went to the canal and did a short walk.  I had on my walking boots but no crampons.  It seemed a little overkill for what we were planning on doing,  Oh I was so wrong as when walking down a slight slope on the ice my feet slipped.  Colin was holding my hand and tried to stop me but to no avail.  Down I went and we both heard the CRACK.  I lay there in shock and Colin said he heard my wrist crack.  I too felt there was something bad happened as my wrist had hit the hard ground twisted somehow and we both feared a break. 

Now breaking bones is bad for anyone but as we with ph cannot have anaesthetic without suffering severe complications we were horrified.  I know that mostly they just put it in a cast but I also know many people who have had to have operations and metal pieces put in, my daughter for one after slipping on the ice.  Anyway Colin managed with difficulty as the ground was slippy to get me up.  I said I would be ok and off we went to complete our walk.  My wrist felt painful but I could move it so knew it wasn't broken,  How  fortunate for me.  It began to hurt more as the day wore on and by the time it was bedtime I was using pain killers and wondering if I might have chipped a bone.  Woke this morning with relief to a wrist that feels so much better,  I managed to wash my hair with my sore hand and wrist so the relief is great.

We are now preparing for a couple of nights in Whitby.  Let's hope we get over the moors,  A shovel will be put in the boot of our car for sure and plenty of warm clothes and yes ....... the  crampons for my boots!  We are not risking another accident like that again.  

What are they thinking of?

For many months now we have campaigned to keep our A and E as there was talk of amalgamating it with Huddersfield,  Now though the distance between the two hospitals is not great being only around six miles that six miles is a bad one.  The stretch of road always seems to be clogged with so many cars, always hold ups for many many minutes.  Selfishly I wanted to keep ours as it is just around the corner from me and for the first year of my ph and my Hickman line it was the first place I went when trouble occurred.  They would then ring my ph team at Sheffield and either get me on the right track or an ambulance would take me to Sheffield.  

Petitions were signed and reasons for opposing this were put forward to the powers that be and at last it seems that we may be keeping our A and E.  On hearing this  we thought RESULT but then.....we heard that it seems they are still  going to amalgamate the two and get rid of Huddersfield one.  This means that the boot is on the other foot and now they will have all the same objections as we did.

What bugs me so much is that we send so much money abroad to countries that admit they don't need the money as much as we do, thank you very much UK.  We did it for a country that had been flooded, it may well  have been Slovakia, but don't quote me on that one as not quite sure if this is where we sent it to.  On receiving our money they said themselves they were shocked to receive it as our flooding was greater than theirs.  Our own valleys are flooded so badly it will take years to recover from and lack of money is a problem.  The same goes for hospitals.  We close them through lack of money or lack of nursing staff as we can't afford to employ people to work in them. 

I have no problem with helping countries anywhere in the world.  I feel we should, if we can, help others less fortunate than ourselves.  What I do object to is how we just seem to send it to all and sundry who have more than us but the corruption in their countries is  great.  Lots of what we send end up in the coffers of the corrupt governments and not where we intend it to go, to help the ones that need it badly.  So it goes on.  We send money when we badly need it ourselves.  Our hospitals are closing, schools overcrowded, not enough houses, quite where it will end I do not know but it is scary.  

If the money we have in our coffers was looked upon as money in our wallets I think the government would think differently.  If you have ten pounds in your purse and need to pay bills or put food on the table then spend the ten pounds "in house" so to speak.  Set your own house up safe and sound and then, when you and yours are sorted then and only then see what is left in your wallet or purse and help the others that need it. What we wouldn't do is send our ten pounds away to help others ignoring our own needs and so leave us with nothing to pay  our bills or put food on the table!  

We just don't seem to look at it this way and spend money madly whilst we ourselves are sadly lacking in the things we so badly need for our own country,  

Well I know I shouldn't talk politics and maybe I should delete this but no I won't, in this instance I shall say what is on my mind.  

This is only a short blog as I now need to pack my bag ready to set off for Whitby,  Pray that we are not blocked by the snow anywhere.  This short break will do us good as on our return we will have Izzy for eight nights.  How exhausted we shall be after that.  

Go well everyone and let us keep up the good fight against ph.  How I am looking forward to my next hospital visit to discuss my next trial, let's hope it is a good one!  

Love to all and many many thanks for bothering to read my ramblings.  xxxxx

Famous name in the pah world

Natalie Cole

How very sad to read of the death of this beautiful and accomplished lady,  We are now told that  she died of the condition I suffer from, idiopathic pulmonary arterial hypertension,  One question I would ask though is why ipah,  Idiopathic means just that, it means they can see no reason for it.  Sadly Natalie had issues with drug abuse and this led to kidney failure for which I believe she received a donated one,  This in turn led her to have ph.  Whilst yes she went on to have heart failure as one can do with ph it surely it can't be called ipah.  We haven't taken drugs which have caused our bodies to suffer this terrible condition.  There are five different forms of ph, ipah being the first one,  I don't see how Natalie could have ipah. I believe she had another form of ph. 

Other forms of ph are due to many reasons.  Sometimes blood clots in the lungs, sometimes copd from smoking, sometimes from scleroderma, so many reasons.  For some it may be due to taking diet medications. All so sad when the result is ph   but ipah means no reason so I wish they got the story right. (Of course this precludes the kidney damage due to being caused by undiagnosed ipah?  Our bodies do get damaged due to lack of oxygen.  Just trying to cover all bases here as you can see.

It is also a pity that she didn't become a spokesperson for the ph society,  Somebody with such a high profile could have done much awareness of ph and so raised people's understanding of it. I can understand her though not speaking up, we do not want to be defined by our illness but be defined who we really are, though masked by ph.  There are many of us not famous trying so hard to raise this awareness in people, she could have done it so easily.  Maybe a simple change of lipstick to blue for a day and telling the to crew just why she was doing this would have shown to many what ph means.  Anyway she had her own reasons for not raising awareness and we will never know why.  So sad to lose this incredibly talented woman, her dad would have been so proud of all she achieved in her life.

Gosh Davie Bowie!

How awful this news was this morning,  The music industry has lost a great guy who made music to the end. I grew up in the era of David Bowie being right out front there in the world of music.  How many of us didn't sing along to his songs.  Such a shame and way too early to leave this world.  My condolences  go to his family and his friends and indeed anyone who liked and admired this guy for his music.  I loved how he kept re-inventing himself, he was certainly never boring.  

Wow, such power and such destruction. 

Our Little Valley

Please watch the above video Link.  This is the valley where I live, all my family live here too.  So much destruction by water.  Bridges that have stood for four hundred years are gone, houses ruined, barges thrown so far they are now in the woods.  So much horror and yet as you can see so much beauty in these valleys.  I am so proud to see the spirit of the communities all pulling together and working hard to try to get some semblance of normality back in all their lives.  There is much work to be done.  Houses need to be repaired and decorated. The bridges need to be put back exactly as they were as they are listed. All this work will take over a year.  In the meantime everyone has to go a longer way around to get from A to B.  I haven't heard any complaints as people go about helping each other, just a great sense of companionship. I am so proud of my Yorkshire brothers and sisters showing their true grit. There is strength in numbers and we have surely shown this over the last few weeks,  

Where am I headed next

Most of us with ph need to change medications as our bodies get used to them and so stop working efficiently.  I do wonder where I will go from here.  I began this journey on the Hickman line for twelve months, I then went onto the oral medication I take now, 300mgs sildenifil, or Viagra whichever name you call it.  Along with this I take 10mgs ambrisenten plus the water tablets and warfarin etc.

For three months on top of these meds I also took inhaled iloprost 9 times a day.  This treatment took about twenty minutes each time as we had to wash the filter each and every time it was used.  Doing this nine times a day certainly takes it out of you, there was never a let up whilst on this regime.  I remember having to take it whilst on airplanes too, something that had the people round and about ogling at this going on. 

I took this medicine as a third drug and we are only allowed three drugs if we are waiting for, or hoping to get on the transplant list,  I was  rejected on the transplant list but truly believe I don't need one yet anyway,  Due to the laws that govern our drug regime I was only allowed this drug for three months,  For me I am not sure it did me much good anyway! 

I have never complained about any drug regime I have been on, always thankful that my A Team are working so hard to keep me stable.  Now though it appears one of my meds is not working hence the rise in my pressures.  I am so looking forward to seeing which medication I shall  take next, once the trial drug is completely out of my system of course. It will be very interesting to see and it makes me thankful we have come so far that there are now options available to us.  

Talking through the long nights

I am always awake in the night and this is where I generally catch up on admin etc.  It was so lovely then that last night I was fortunate enough to have long conversations with two ph friends.  Lucinda Duxbury-Smith lives in Kent and  was awake so we private messaged a few times, so lovely to speak to her.  I also spoke to Jane Campbell who lives in America for quite a  while.  When we had finished our conversations I wondered what my ancestors would have  thought if they could see me now, talking to people all over the world by just a click of a few buttons.  So grateful that we can do this.

Being LIVID

Our table and chairs which we purchased ten weeks ago now were due to be delivered.  Due to a hospital appointment I asked for next delivery date which was Monday 18th, this was agreed.   On ringing to pay balance we were told they have given our  table to somebody else now as we didn't want the Thursday delivery slot and they have NO IDEA when the new one will arrive, though we are informed we can have the six chairs.  Initially we could have the table but no chairs.  When we asked them to speak to their suppliers to see when the table would be ready they told us they have no phone number, just an e mail address!  Rubbish.  My husband was in business for many years and knew his suppliers numbers very well.  I just cant believe that a company so well known have no access to their suppliers phone number. They offered us £130 good will gesture but I said we don't want money, we need a table and chairs NOW as promised,  If no joy in the next few hours we shall cancel, though this means we go back to waiting weeks at another company. If this needs to happen we shall purchase something cheap to make do and then donate it to charity,  I am soooo cross I can't put it into words.

Snow or no snow Whitby visit

We are heading off over the North Yorkshire moors to Whitby next Sunday for a couple of days.  My god parents have lived here most of their lives but sadly my  godfather died a few months ago.  I want to go and visit my godmother and we have booked to stay in a hotel for a couple of nights.  If you have never been to Whitby  I can highly recommend it.  It is an unspoilt seaside town, none of the brash coin operated amusements here except one.  Well known as a fishing port it is so nice to be able to walk onto the harbour early morning and see all the fish caught.  Locals buy their fish nice and fresh daily.  Whitby kippers are well known throughout England, a super treat.

Bram Stoker the author of Dracula lived here as well as our very own Captain James Cook who lived here whilst not at sea.  The town is famous for its 199 steps at the East Cliff  leading to the ruined abbey, it's most prominent landmark.  

I love to see the swing bridge open to allow the boats to go either go out to sea or return.  The whalebone at the top of the cliffs is another sight to see.  I love the museums of Whitby.  I always find something different to see each time I go.  

We are so looking forward to this though unfortunately I cannot take my mobility scooter, the hills are very steep and if we have snow then there will be no point. so this does mean the car will come into play for most of the time,  Also if it snows it is not the easiest place to get to.  The moors we need to cross get really bad with ice and snow and I do not wish to be caught up in this weather sitting in the car whilst waiting for the snow ploughs.  I know the weather is supposed to change from rain to snow but please let it hold off for a while yet.

Shall get this blog off now. I will let you know how my next visit on Wednesday goes re trial meds.  

Everyone have a great day and so lovely to be able to reach out to my family and friends worldwide.

Much love to you all and thanks for reading and for sharing.   Carole xxx

The trial is FINISHED!!!!!

My hospital visit

It has to be said that I have been getting increasingly worse with my symptoms since beginning the trial medication two months ago.  On going over to Sheffield today for another trial visit I wasn't sure where we would be headed.  Echo, ECG and the blood tests needed, plus six minute walk test and still not quite sure what the outcome of the visit would be.  On the one hand I hate to give in, on the other hand how much longer could I go on with steadily worsening conditions.  If it was the ph worsening I was snookered whilst on the trial, though as was told to me the symptoms certainly were the ones linked to the trial medication.  Charlie my doctor said he could not make the decision but as far as he was concerned he was shocked to see me still on the drug as he knew how bad I had been one month earlier.   He said he knew how tenacious I was, testament to how I carried on with the DCA drug even whilst I was having horrid side effects.  Whilst on DCA though in myself I felt better, though I did have consequences and still do.  On this medicine I had nothing but bad  bad and even more bad effects.  As he was quick to point out I wouldn't be getting any medals for carrying on and indeed if it was a worsening of my ph it could take it beyond where any change of meds would help. He reminded me this was what trialling was all about, some would tolerate the drug, others wouldn't. 

So decision made and I am off the drug.  Not the visits though as I will continue to be monitored for months to come yet.  In itself I think this is a good thing.  I return next week for more of the same tests.  I hope I feel a little better then.

I asked if it would spoil my chances of trialling any other drugs and was told emphatically no as I had proved both before and now I take them very seriously.  He said it wasn't as if I stopped just because I couldn't be bothered.  Anyway as I said before I still make the visits.  I do hope that my condition improves and that in a short while my normal ph meds can be adjusted to try to stem the rising tide of my levels once more.

Our very famous little one!

I wrote in an earlier blog about attending my first ever baby shower that was thrown for our Jessica by her mom.  Little did we know then quite how famous our little chappie would be on his birth.  Unfortunately the family live on Park Row, one of the places hit so dreadfully by the floods.  Barges were washed up on the banks of the canal opposite them and their house was filled with water, right from the cellar up into the lounge.  Unfortunately nursery equipment that was about to be assembled was destroyed before they had a chance to move it.  The water came in so fast.  All kitchen has gone, now needs all new, such horrors.  They couldn't get insurance as they were flooded back in 2012.  Let us hope the government goes ahead with their promise to help all these people in such a predicament.

On January 2nd whilst still reeling from all that the family now faced Jessicas' waters broke.  Fortunately they had just been loaned a courtesy car as theirs, along with Jesses' mom and dads cars  were destroyed in the floods.  Amidst the mud and the water Jess and Brett made their own way to our local hospital.  There after being examined she was told to go home, she was in early stages of labour.  As the labour progressed they rang the hospital and she was told to take a bath.  It became apparent rather quickly that Archie would not wait for his arrival into the world.  With horror Jess realised he was arriving there and then.  Towels were quickly gathered and the fun began!  In minutes his head was born and a neighbour arrived along with the paramedics to deliver the rest of this bundle of joy.

Being born at any time certainly is an upheaval for any family but to be born when the house was in such a state, mud all over and furniture ruined, carpets floating etc.  Not fun at all.   They had no means of washing or drying clothes and towels.  I gathered up a few towels today along with my steam mop  took them to the house only be greeted with the phones constantly ringing.  It was all the newspapers hoping for a scoop.  That, along with all the news channels made me beat a hasty retreat.  I left them to the joys of all these people trawling all over their house amidst all the destruction.

Off I went, through the mud on the roads and into my car.  Now I am home and feel so sad that a time so precious, and of course it is still so precious is marred by the total ruin of their things.  One good thing though is that both Jess and Archie are safe and well.  Another addition to our family and one so very much loved already.  {oh and I got to give him his bottle} such a lovely little face he has.

I have attached a link below which shows Archie with his dad and neighbour.  Pity they didn't get his birthday right, he was born on the 2nd January.

http://www.mirror.co.uk/news/uk-news/miracle-boxing-day-baby-born-7118549

Are they MAD!

I saw with horror the news today that a gorgeous four year old girl had been stuck to the toilet with superglue!  Somebody idea of a good time was to go into the girls loo at a Mc Donalds and apply this to the seat.  Very quickly after they applied this a little girl went to the loo.  Her mommy waited outside the main door as she had two other little ones with her.  She did note that her daughter was taking a long time and when the little girl arrived distraught it all came out why.  This beautiful girl had been unable to get off the toilet as she had been sitting on superglue.  After a huge struggle she did manage but left behind skin!  What kind of people can do this type of thing.  My wish would be, though of course it can't happen as human rights dictates otherwise, that the two people responsible are stripped naked and be made to lay on a floor totally covered with the stuff.  Let us see just how funny they find it then when they have to be almost rendered skinless.

Orphan disease status

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm478599.htm

The above link is to information on how we are given orphan status and just what it means for us with ph. More funding and more incentive for the pharmaceutical companies to research our condition.  Please read it and once again it sure gives me hope that I will, thanks to all this going on, be here when the cure arrives.

Download video in Kath's garden

https://www.facebook.com/rob.graham.503/videos/1079019482127180/

The final link above, is a video from one of our PH friends, Kath Graham. This time we were told by the researchers that at last a cure may be close!  Once again we play the waiting game whilst more tests are being carried out but they believe than in the next year or three they will be ready to trial.  I love that this video ends with them saying, on national television that AT LAST we have REAL hope.  Please watch this video.

Such an accolade for me

Who did I receive such an accolade from, well none other than Izzy herself.  Now for those of you that know about Izzy she is very much a grandads girl, in fact me rarely getting praise as it is all grandads doing when he sorts out anything to do with play.  However I had received rather a large box in the post containing a gift.  I took the gift down to the store room and was just about to get rid of the box when Izzy decided it was perfect for a dolly bed.  Then she said she needed two as her grandads baby needed one as well.   My brain was working overtime trying to think of just he right thing when I hit on a brainwave.  Off I went into the cupboard and pulled out one of her drawers from the storage unit that houses some of her toys.  It made the perfect bed and I was well rewarded by Izzy who said to me "well done grandma, you have such good imagination"!  Such praise indeed.

Visiting my ph friend on the ward

As some of you will know Laura Parker was admitted to Hallamshire a couple of days ago.  I called in to see her and she was fed up, and who can blame her.  New treatment is beginning today to try to get rid of the fluid in her legs.  They looked extremely painful as they were so swollen.  I do hope it works.   I know when I had been in before a lady in the next bed had legs even worse than  Laura's and the meds did nothing for two to three days and hen, hey it was like a miracle.  She ended up with the most beautiful slim legs, indeed we called her Jane lovely legs.  Do hope the same will happen to Laura. 

Discussed when seleixipag would be given over here as it is in America but was told not yet, though we were headed in the right direction.  This drug works the way iloprost does though not given through hickman line or nebuliser but just a straight pill.  I believe it doesn't have as many dire side effects as when given via the other two methods.  We shall see.  

Well my chair calls for me to rest, hospital visits are so tiring aren't they.  

If any of the above links do not work please copy and paste the URL into internet browser.

Love to you all  Carole xxx

Awareness

Such sad news.  I wrote in a recent blog about a young man with many health issues and one of them believed to be ph.  He wouldn't accept it and wouldn't accept advice from his oh so loving girlfriend, She did research this disease and somehow found me and private messaged me about it.  She was at her wits end when she contacted me and we spoke at some length about him.  She asked which questions needed to be asked and answered at his next appointment as she so wanted to go with him and talk to the doctors.  I was expecting our next conversation to be about her going with him for his next appointment and where he was now headed with regard to more tests etc.  I was devastated to read this morning of the death of this young man!  His girlfriend is of course lost, she said it is the hardest thing she has ever had to deal with.  They were talking about having a family.  How my heart goes out to this young girl coping with this.  I feel so bad that I wasn't able to help more.  He couldn't accept that he was so poorly, that he could have this condition.  He didn't want her to find things out about ph, didn't want to discuss it, telling her he wasn't really ill. Even his family did not believe this girl when she spoke to them about the severity of the illness. Could he have been saved if diagnosed sooner, I don't know, but I do know that he closed his mind to anything really bad happening to him, despite all the warning signs. His girl could not have done more. 

 I will still campaign to raise awareness about ph.  I pray the doctors begin to take heed of our symptoms and diagnose us sooner. In the meantime I send much love to this girl, I won't name her but she does read my blog and knows who she is.  Her boyfriend was fortunate to have such a kind and caring girlfriend and she has the peace in knowing she was with him at the end.  There was nothing more she could have done for him but he had her love, support and loyalty right to his last breath.  He couldn't have had a more loving girlfriend.  

Right now she is lost.  As indeed we all are when we lose a loved one.  She is totally devastated.  I pray that she finds some peace in her life.  She has a lot to deal with sorting out funeral arrangements etc.  I hope she finds the strength to cope. It is such a sad place she is in right now. 

Wrinkles and crinkles

Izzy, our granddaughter told me that when we get old and have lots of wrinkles we have to die!  Of course she isn't wrong, we can't live forever but after her comment it did cause me to look frantically in the mirror at my face searching for wrinkles with a furrowed brow!

I try to teach her to be right and fair in the world and not to judge etc.  On going to the shop this morning she saw her first ever dwarf.  She was rather surprised as she had never seen a person with this condition before and said "grandma I have just seen a little person". I explained to her that we are all the same just with some people their bones do not grow so tall.  This satisfied her and how I wish we could live in a world where we are all as accepting as children about the diverse people and things we have around us everyday.  This would be heaven.

Cinderella 

We had tickets booked many months ago for myself, Colin, Danielle and Izzy to see the pantomime on at our Victoria Theatre.  Izzy just loves pantos's and so looks forward to them, this year even more so as it is the first time her mommy was going too.

As the day progressed it became obvious that I would struggle to get there,  not least as there is no lift and the stairs right now are not the easiest things to deal with.  We asked Danielle if she could see if Izzy's best friend could go instead of me.  Unfortunately it wasn't to be and so with a sad heart I saw them leave.  Colin said it was probably one of the best ever performances he has seen so I was really pleased for them all.  Danielle told us later that on reaching home Izzy was replaying it all in her bedroom for her! Hopefully next year I will be sitting with them all screaming "its behind you" once again. 

Awakenings

I was watching this film starring Robin Williams and Robert De Nero.  A true story it resonated greatly with me as the story centred around a man who had been lost to this illness for 30 years.  Robin Williams  played  the specialist who discovered the drug that brought people back into the real world after years of having this terrible affliction, one of being catatonic. Robert De Nero took on the roll of the main patient who after being "brought back" for a while so to speak the drugs then seemed to cause problems.  Knowing how he was going back to the catatonic state and suffering terrible things happening to his body  he still insisted that the doctor continue and record everything that was happening to him. He  knew how important trials were for others.  So it is with all of us happy to trial drugs, take surveys, allow bloods to be sent to researches, take part in the genetics testing, do the cohort study  etc.   I know it can be a nuisance filling in surveys, having the blood taken, trialling etc but look  what we are all doing for the future of ph.  You should all be so proud of anything you do to let the researchers and doctors move forward.   

For every illness now cured there had to be researchers working hard, doctors getting the diagnosis, pharmaceutical companies prepared to spend the money on trialling drugs, patients willing to take on the trial drug and all that it entails.  If you can possibly find this film somewhere please try to watch it. It was a sad harrowing  and yet heart warming film at the same time.  I feel sure you won't feel you you have wasted your time.  It will also let you see just how valuable your input is for getting to the root problems and finding the cure.  

Great idea!

On buying our new wooden table and chairs we rang British Heart Foundation to donate our old glass table and chairs.  The condition is excellent, so we knew they would not have a problem selling and the proceeds would boost their coffers. We were told to ring a couple of weeks before we wanted them to go. I believed we would have to wait a while for them to collect and we could get rid of it a couple of days before our new one arrived.  However when I rang  they said that they were sending furniture and electrical goods to the valley a few miles from us so badly affected by the terrible floods. Would we have a problem with this or did we want it to be sold and the money put into the heart foundation. This was a great idea, so good to know our things were going where they were so badly needed right now.   I had felt so bad that I couldn't be any real use other than donate money.  I felt in this way we were going some way to helping even more. We of course also sent other things we had just sitting in the store room.  Again there was absolutely nothing wrong with them we just changed the colour scheme of our electrical goods.  All the things we sent will be very much appreciated.  Though no money will exchange hands for the heart foundation I feel this to be a very worthy cause.  I hope whoever is given our things can get back to normality quickly, though I fear it won't be the case. I was shocked when they said they needed our items immediately!  Would we mind, could we manage?  Of course we said yes, after all their need is greater than ours.  Our new table and chairs won't be here for another couple of weeks but I think we will be ok.  So it was that the day following my ringing them that two very efficient guys arrived and within minutes we had a big empty space where our table and chairs had stood.  

We did keep the floor protectors once they took the table and  we now  have Izzy running around going clickety  clack with them.. Very creditable horse hoof sounds going on around here today. . 

The Crying Game

I am not quite sure who sang the record, though I know my ph nurse Allison will without a doubt!  We feel it was Dave Berry but could well be wrong.  The song begins I know all there is to know about the crying game.  Well which one of us with ph DOESN'T know all there is to know about this.  I woke this morning, New Years day with really bad breathing.  I suppose it wasn't the ideal thing then to begin my day with a glass of champagne, in particular as I rarely drink but it did go down well with the scrambled eggs.  My breathing has been hard these past few weeks, getting worse day by day.  I am convinced it is the trial medicine so am sure that on Wednesday I will be taken off it.  However Wednesday seems a long way off to me right now when I am struggling so much.  I must confess to having a cry.  I am not super human, I try to always be positive and to that end I still believe with every fibre of my being that I will be here when the cure comes BUT.......... sometimes, just sometimes I weaken and cry.  Today was one of them and though I didn't cry for long I will admit to feeling a little, yes just a little sorry for myself.  

Wednesday before Christmas I had rung my trial co ordinator to tell her of my worsening breathing and my weak legs.  I was so sure she would say come off them as my doctor had initially told me he wanted me off them if no improvement in another week.  I was so shocked then when she told me to stay on the drug unless my oxygen dropped to 88.  Still I do as I am told and here I am still taking he meds.  It could well be that I can't now just stop the, it may be gradual.  

I am always trying to show to my family in particular that it isn't so bad, that it isn't so hard.  I don't want them to see all that it entails.  My children don't read my blogs so I can at least be honest on here. My family are so used to seeing me flopping around in my pjs as they are so comfy being elastic in all the right places.  Bras and waist buttons and zips constrict our already constricted bodies so as soon as I am able off come my day clothes to be replaced with comfy floppy ones.  I don't wear  the traditional ones though as I don't wish them to appear to be pjs, indeed anyone seeing me would think they were some sort of lounging suit.  I have three pairs of these and bought my fourth yesterday.  We never know when we will be admitted to hospital and I don't want to be seen in the normal type of pyjamas so need to have plenty of my type of these. So today will be a floppy pj day for sure.  I shall do nothing but finish this blog and then rest, rest and more rest.  Tomorrow will be another day, hopefully a better one and maybe my breathing will ease a little.  It is not the best start to the new year but I know it will get better, its just a blip!

So then here is the first of my blogs for 2016.  I wish each and every one of you a happy and healthy New Year.  Lots of encouraging things will be seen on our sites to do with research, new drugs etc. through 2016. Will this be the year of the final breakthrough, the one to conquer ph once and for all.  We can't know but we can hope.  

I thank each and every one of you for the love and support I have received throughout my illness. 2015 saw the ph website growing almost daily. Thank you too for the support given freely to others on our site faced with this devastating illness and their fears when initially diagnosed.  You have all gone on to become great ph buddies and help and encourage one another.  I am so proud of you all my friends.  

Take care, love always  Carole xxx