For the newbies, revisiting my past.

Back to the Future

Some of the newbies coming on here have asked me to write a blog about what happened in the time after I reached my A Team at the Royal Hallamshire so here goes. Now before you read it I need to tell you NOT to get scared, it gets better, honest. So here it is.  A catalogue of how I  got from there to here, now living a life as you can see from my blogs.  I am doing things I could not do when first diagnosed,  It took time to get here but step by step, baby steps at first here I am.

Now remember this goes back five YEARS.  It is what most of us go through at the very beginning but it is all very necessary to get us on the right track.  Please leave this page now if you know exactly how it goes, I don't wish to bore you as you too will have been through mostly the same things. 

The three days I spent in my local hospital were pretty tough as I was given no medicine, though they wanted to give me morphine as the pain in my heart was bad.  I refused as I am not good with this medicine, or indeed any of the medicines from this family.  Colin had to come and shower  me each morning as the staff were too busy,  I remained in bed the rest of the time BUT I had my family and friends around me, the staff were marvellous in that they allowed anyone and everyone to visit so in fact it was quite like a party.  Despite the pain I made people laugh at the fact I was dying.  I remember making a joke and my sister in law Linda asked how I could laugh at such a time,  I said I didn't want everybody to say when I died well wasn't she miserable just cos she was dying!  All I wanted though was to get to Hallamshire and the day arrived and I was told the ambulance was on its way for me.  Oh the feeling of relief. 

On my arrival I was immediately given a bed in the room opposite the nurses station so they could keep a close eye on me,  I went through the routine of answering all the questions to a lovely junior doctor, Richard who I remember had his arm in a sling as he had broken his shoulder by being hit by a car whilst on his bike and he was finding it very tricky to write all info down.  Then the professor Iain Sabro came to see me. After an examination and a look at the X days of my heart sent over from Spain and Halifax he sat down, held my hand  and said it was very serious.  I said I knew and begged him to keep me alive longer than the six weeks I had been given in Spain, almost a week ago now.  I told him my daughter was having a baby in six weeks,  I needed to see this baby and see if it was a boy or girl., He promised to do his best but warned me I would be very busy for the next two days as I would be going for so many tests.  I had been put at the top of all the lists to have these done,  meanwhile I must not get  out of bed as he feared a heart attack. I was pushed in my bed or wheelchair to all of these.

I then met the nurses who would be caring for me for the next five weeks and oh what  a joy they were, as  was the sister, how I loved them all.  There were no surnames used on this ward, not from the cleaners to the specialists, first name terms were used  all around. I liked this as it made everyone taking care of me feel like a friend and indeed they did become good friends. Though some have left over the five years we still keep in touch and I love that they follow my progress and I can see into their lives too.  Sister Taylor was kind and loving and wiped my tears when I asked if I would ever hold my grandchild.  She assured me that I would,  Allison was the nurse always singing and must have known every song known to man. Liz had problems with her partner but was always a tower of strength and the list goes on and on,  

I was immediately put on a drip into my arm and given the drug iloprost,  I had to sign a form to agree to it as it was not, at that time, approved by the UK though it was in America.  As ipah is what they call an orphan disease, meaning very rare we could use these drugs whilst awaiting approval from our medical federation.  We quite simply didn't have the time it takes to approve the drugs through normal channels.  

Then began all the tests,  so many and the fear of them.  I know now there was nothing at all to be scared of but I was so poorly and as my body was being pushed from one department to another, one machine  to another it was scary.  I was terrified of the right heart catheter.  I had no idea of where I was being pushed to when I went from the cat scan to the theatre for this. There were so many people in the theatre and three people behind the screen doing what needed to be done with computers,  huge cameras  over my head were moved into place and the procedure began.  My fear quickly turned to a feeling of peace as a doctor I had met on the ward was performing the operation and a nurse from the ward was holding my hand and monitoring my blood pressure.  The atmosphere in the theatre was lovely, calm and dare I say it loving.  I felt very little, just the injection into my neck and around twenty minutes later I was being helped back onto my own bed in the theatre,  it took longer than the twenty minutes performing the right heart catheter to set the theatre and cameras up for it.  I never feared them again and have  had many,  

My next fearful one was the MRI, Having being told I was so poorly the thought of going into that tube was terrifying, really terrifying,  Here again the staff came up trumps,  As I had a line into my arm with the iloprost they needed to extend this line and have  the drip outside of the room as it was, of course  metal,  A huge line, metres long was attached to my drip so I was never without the iloprost and a nurse, Lisa from my ward stayed in the outer room where, as they were setting up the MRI she talked to me and calmed me down,  I knew I would be in this machine for at least,45 minutes. How did I cope, well I closed my eyes and thought about my grandchild about to be born, my husband who I love dearly and is my rock and my children.  I knew I didn't want to leave them, there was so much more to say to them. I also wanted to make peace with special people from my past soI  knew I had to let them do this, to see all there was to see so I was determined to stay strong for this test. I also made sure to listen intently to the instructions given to me, to breathe as and when told to and was determined NOT to press the panic button.  Again I have now had many MRIs and know there is nothing to fear.  It's warm in  there and now my only fear is that I will fall asleep and miss the instructions about when and how to breath.  It is truly not scary.

On then to another machine that was to find out, through radiation, where the blood was going to from the artery leading from my heart to my lungs.  So large was the right side of my heart that it had actually pulled and stretched this artery and torn a hole into it as it was so stretched,  I was  told later it was ready to sever!  That would have  been certain death!  As I lay quiet and still in this machine I was waiting so long for them to start I was getting fed up.  After around half an hour one of the team came into the room to do some adjustments to the machine and I asked him how long it would be before it began.  He smiled as he told me I was half an hour into it already,  it was unlike any other machine so quiet was it.

Then onto the breathing test, or the lung function to give it its correct name,  Now this was a bit traumatic as they were running late and my iloprost was almost finished,  I knew it was supposed to be continuous and I was terrified it would run out, as indeed was the nurse that was with me,  Here is where my amazing hospital showed how they made sure I was kept safe at all times,  I went into the room for the test and was horrified to see a bike, I truly believed they expected me to ride it and I begged them not to make  me get on it as I could barely sit up by this time,  they smiled  and assured me I was not doing that but I was to breath into the machines that tested my lung function. I did so poorly at these tests that they told my doctor it was impossible to measure my function at that time,  The  nurse who was with me was horrified to see just how little iloprost was left in my pump and rang ahead to the ward so they could prepare me another syringe to be ready when I arrived back.   A porter went ahead opening doors and another held the lift as I was wheeled back to the safety of my room and the new syringe applied.  Then came the nights and the machine beeping all the time.

The problem was the machine was very sensitive and every time I moved my arm the alarm went off and the nurses came running.  My lovely friend Maggie, who has sadly since  died, would be scared to go to sleep at night so worried was she that the nurses didn't hear the beeping so she was always pressing her buzzer to attract the nurses attention.  Her husband Bill Hamilton is still is on our site and I want him to know I loved her and cherish the times we spent together.  

Having to be hoisted into the bath and being physically washed was a tough one for me.  Care had to be taken not to wet the line and as I was in the hoist movement was not easy,  the nurse bathed me and washed my hair, I found this hard and oh so tiring. One would think that having everything done for me in the bath would be relaxing and not strenuous, how wrong was I.   On being taken exhausted back to bed I had no strength to brush my teeth and I cried.  When I was asked what was wrong and I told the nurse she replied '"well I can brush them for you" and so she did. 

Hickman Line.

Lisa my ph nurse arrived and pulled the curtains around my bed.  Colin was with me, as indeed he was every day, being allowed in all day long. The look on my face was a terrified one as she asked if I knew  what she was coming to talk to me about,  I said yes I did, it was about my dying.  She said oh no I am coming to talk to you about living!  She then showed me a piece of felt made to look like a human diaphragm and explained where the Hickman line would be put into my body, where it would come out and where the pump would be, around my waist,  This line was to be with me forever and pump the iloprost into me through the line every two minutes to the end nestled close to my heart.  It was to allow all my blood vessels  in my body to dilate  and so help the blood to flow better into my lungs, in this way it slows and can even stop the worsening of the ph.  We were to be taught how to fill the pump daily. We were told that infection was a very real danger and we must not get blasé when doing the procedure, cleanliness was soooo important, 

I won't go into all we needed to do to change the pump daily but it would take around twenty minutes daily and twice a week half an hour as we needed to change some more of the line,  It was hard to learn but a hugely important lesson, that once you began this routine you must not scratch your nose if it tickles or put your hand, even when gloved anywhere you had not  disinfected. If you did you began again as just by carrying on the procedure with hands that were not now clean could introduce an infection which would travel down the line to my heart, 

I found it hard when they increased the iloprost,daily,  it hurt all my body badly and my head ached so bad,  painkillers that others could take I could not, I had once been hospitalised after being given codeine so anything of that group was a no no for me.  Richard my junior doctor worked hard to find a painkiller I could take and it took him four hours to come up with one and what with the pain killer, two paracetamols and an anti sickness tablet we got there and after five weeks I was allowed home!  

Before going home though David, my doctor wanted me to leave the safety of the ward and have a couple of hours out.  So it was then that Colin arrived with my clothes and a picnic and we left the ward.  How I hated it.  My body hurt, walking was hard, I didn't want to eat but most of all I was terrified. I had left my warm, safe cocoon.  How could I ever get any semblance of a life back outside of my hospital, away from my nurses and doctors.  I despaired and if truth were told if I was told I could have stayed in the hospital forever at that stage I happily would have.

Life at the beginning was tough, Days were spent just lying on the bed or settee.  I wrote out my funeral wishes, my husband hated me doing that but I needed to get it done as I knew he would be distraught and would find it difficult if the worse happened and I died, I spent a lot of time in the hospital as every time I had a cold I was admitted and given huge doses  of antibiotics through a cannula.  If my skin looked red or broken where the line came out it was back to the hospital and more antibiotics.  The microbore that covered my chest where the line came out of my body was irritating my skin so I would scratch it and hence back to the hospital as they did not want  an infection to grow. I  truly believed I would never get a life back. I stared out of my window and looked with envy of people walking by, just walking without giving it a thought. How envious was I whose every move was difficult.  My feet felt as though I had big chunks of wood attached to the bottom of them, a weird feeling that was for sure. Steadily though over time the medicines worked on my poor broken heart and after twelve months I was changed over to oral medication, something nobody thought would happen. The  doctors, nurses and Ian my pharmacist were jubilant when they saw the scans of my heart as the  right side had reduced to almost normal and so began the gradual change over.  How lovely it was to not have achy limbs!   The iloprost made my joints hurt and I had to learn that when eating it was important that with your first mouthful of food move it round all your mouth. It hurts but after that I could eat all my meal with no pain,  Getting the line out was simple, though it was not taken out immediately but had  sat closed off hanging from my chest for three months just in case the oral meds didn't take.

At first I hated my heart and lungs, feeling they had let me down.  Now I actually love them because they are working so hard, despite my condition to keep me here and stable. It was a terrible struggle for my heart to pump blood and my lungs to receive it but they valiantly worked away when they could so easily have failed.  It's not their fault I  got ipah and it has made life so difficult for them but they struggle on breathing and beating for me so I owe them so much.

Gradually I began to do things again.  Go out for meals, walk, shop, all the things I believed I would never do again.  I don't lift my granddaughter, lifting is a no go area for our hearts.  It doesn't stop me cuddling her though and she knows I have a poorly heart.  She once got a tissue and put it  over my heart and told me it was a plaster and that tomorrow I would be better, oh how I wished! When she was a baby and I would give her a bottle she would twiddle my line around her fingers! When I have been stupid enough to carry heavy bags of shopping in from the car I pay the price and end up in bed so most of the time I have somebody else come down to the car to do the lifting. 

When I was first diagnosed there were very few medicines for this disease, I believe there were three.  Now there are many more and all in the short space of five years!  It is an exciting time for development into drugs for our condition,  More and more is being learnt. And so much more research is now being done.  Now if one medicine does not work for one person they can be switched over to try another.  Trials are going on all the time both for cures and for medicines to hold back the ph whilst waiting for the cure.  Try to be positive.   I do believe this has helped me to come so far.  Allow yourself to grieve for the life you had but embrace the life you have. 

Five years on after diagnosis here I am living a life, not the one I would have wished for, and waiting for a cure  but a life non the less. I have learnt to listen to my body, not to push beyond when it tells me to slow down. There are things I can't do now but know  I will when the cure comes and I have learnt to take each day as it comes, sometimes good, sometimes bad. When first diagnosed it was all doom and gloom.  I now know that there is a life to be lived with ph.  I know this ph won't beat me and I'm having a ball watching my grandchild, a girl, my darling Izzy,  now five grow up!  

I believe we in the ph world are very fortunate with all our A Teams who work so hard for us to keep us as well as can be.  I believe they really care about us as people and not just a number.  I know I am fortunate to be cared for, and have been cared for, by my amazing team.  I owe them so much more than a few words can say, I know I owe them my life.  I love them all.  

I am thankful daily for my husband who loves me so deeply and hurts for me when I hurt.  I have a strong marriage to a really lovely good man who would do anything to help me and make my life easier whilst living with ph.  It was more than I could have ever dreamt of when I met him and we married.  I don't quite know where I would be without him and I don't want to, he is my rock and one I know I can always depend on.  An amazing step dad to my children and the very best granddad to his darling Izzy.  I say his cos of course she is my grandchild too but honestly if you saw the two together.  The bond they share is soooooo strong and he really throws himself into playing with her, it's so lovely to see. He totally understands ph as much as anyone not living with it themselves can do and does so much for me.  

So there you have it, I hope it helps and for you to see that the procedures are nothing to be afraid of and that we have new medicines coming out all the time, If you are put on a Hickman line it will certainly help your heart to recover. If I were told tomorrow I needed another I would embrace it as I know it gave me a chance to rest my broken heart . 

Live the life you have, enjoy each day and know that there is a future with ph.  I never could have believed I could have climbed out of the abys I was thrown into with this ph but fortunately I am a fighter and with all the help I received from everyone I began the steady climb back.  Yes there are times when I may slip a little back into the hole but changing meds etc helps me then to climb back out. 

If I achieve nothing else other than encourage people to stay strong, be as positive as you can and enjoy life then I have done my very best.  Take care everyone and remember to always raise awareness.  If we can catch anyone else with this disease at the beginning instead of when all the damage is done then we will have earned our stripes!     

Carole  xxxxxx

See - There is life with PH

Friday evening with good friends

We have two good friends and we go to each other's house for dinner around once every couple of months,  It began as a simple supper as our friend was once talking about his love for corned beef and I told him my mom was famous many years ago for her corned beef stuffed potatoes, and so began our dinners together! 

Simple suppers soon became a thing of the past and it now entails three courses, cheese board and copious amount of good wine drunk by three of the crowd, not me though.  We try to make these dinners as easy as we can though so to that end this time I decided the theme was Thai, I actually hate Thai but I do like these recipes strangely enough.  I made the Thai soup a few days before and the dessert was a very simple pear frangipani so that was made on the morning of the dinner,  Colin was to be responsible for the main course which was a delicious prawn stir fry dish served with wild rice.  He did an amazing job and the dish was truly delicious and  the rice was just as it should be , fluffy, al dente  and each grain separated, not a big sticky mass, except......... We learned that the one member of this party does not like rice, we knew he did not like veg so deliberately went for rice!, The dinner went well though with lots of good talking going on.  Next time it will be back to corned beef hash!  

Out with the old, in with the new.

For five years we have lived with a table and chairs we hate.  Quite why we  lived with them for so long is hard for either of us to understand.  When we moved over to Spain we took with us our beautiful oak table and chairs, The  table was large and oval and had angel wings in the middle that folded out to make the table even bigger.  Many games were played on this table, many meals eaten. We sat at this table and talked the nights away from time to time.  We loved it.  When we sold to come home we left the table, as indeed all our furniture with the house and apartment in Spain.

When we moved over to Spain we kept an apartment in our home town.  We furnished it but did not buy a table and chairs as we were only going to be using it for short periods of time when on holiday in the UK.  However after a time we were asked by a neighbour who was renting another apartment if we would be interested in her taking on ours, The rent she was being charged was too high so we agreed she could rent ours at a more reasonable rate.  That being so we had to go out and buy her a table and chairs.  At the time glass tables were very much in vogue and she requested one.   It didn't matter to us so we bought said table and six chairs and all was well.  That is all was well until we returned to our apartment and had the awful table and chairs!  

We both hated it so why did we live with it.  I think it was just when we first came back there was so much more to be thinking about, I had the Hickman line and was dealing with getting some sense of normality back and the best news was we had our new granddaughter.  The hideous things were only thought about really once or twice a week.  So quite what prompted me to say to Colin on Friday "I hate this table and these chairs, let's buy new ones". He immediately agreed and so we are off off  shopping tomorrow, taking with us our Izzy who will be with us for the day.  

New table here we come 

We set off to look for tables believing we would be mowed over either in the roads or in the shops. How wrong we were and it was so nice not to be hustled and bustled about. So it was we began our table hunt. 

We saw some pretty bad ones that would have dropped apart in a short time but we knew what we were looking for, a good strong round table with angel  wings to turn it into a bigger oval for when we had  company,  We wanted six good chairs with some padding on the seat and back as we can sit for ages when we have company and we both hate unpadded wooden chairs.  There were only two serious contenders and lots of measuring went on to ensure we had the correct size for our space. Things look smaller in the huge showrooms but the reality is once they are in your own home they can appear huge!  We both loved the one we decided on and after some haggling, I am the one to do this, we reduced the price.  I just can't bear to pay the price the shops ask.  I know that even when they say no, there is no discount above what we have already offered that there generally is if you go about it the correct way.. So it was with us.  I asked what his best price was and was told there was no more movement in it  as it was the best quality wood and they had done me the best deal.  I said my usual "well we will just go and look elsewhere then and maybe come back if we can't find something better suited". The salesman looked at me and knew he had met his match and off he went to juggle the figures again!  It's really a farce.  He came back with a deal I felt better about and the deed was done, well almost, it's never so straight forward is it.  

" Right madam he said,  we can have your table delivered in four weeks but the chairs in TEN! "   We were gutted as we were so looking forward to ringing the heart foundation and having them come round for the table and six chairs.  There was no point in giving them a table and then weeks later  offering the chairs to go with it.. We have agreed to get the full package delivered in ten weeks.  We both hate the old table even more now we know it is to go! It does give us time though  to get some felt protector for the top for when we do our crafts on it, again always a silver lining. 

On leaving we decided to go out for lunch.  I was so proud of Izzy who, when presented with the menu asked for water to drink as opposed to sugary drinks, jacket potatoes as opposed to chips, and corn on the cob, though she did have two sausages. For dessert she chose fresh apple, strawberries and grapes and thoroughly enjoyed them, good for her, she has better eating habits than I do! 

Well who would have  thought it.

I received a message on Saturday  from Paul, the administrator  of the Pulmonary Hypertension Facebook page set up by our own very much loved Anthony Roe who sadly passed away in August,  He asked if I would take up the post along side of him.  His reasons being I am termed to be a long time survivor and he knew that I had known Anthony personally.  I was rather fearful at first as I am not very good with computers but I asked him if I could keep running to him for  advice until I got my head around what it entailed.  He was so kind and explained things I needed to know, said he would always respond to my queries and away I went. Very early days but I blocked a couple of people requesting to join as it turned out they did not have ph at all, just wanted to be admitted to as many groups as possible. I approved a couple of people too and I hope they get much help, guidance and reassurance from our members,  I actually feel quite honoured and I hope Anthony would have approved Pauls choice of administrator.  

Lazy Sunday afternoon.

I am just so tired, my battery pack is drained,  After shopping for the table yesterday I came home and made twelve packets of soup, from scratch, for my elderly neighbour, these I put in his freezer so I know he always has good food in. I also made him ten packs  of stewed and puréed apple  so that I know he is getting enough vegetables and fruit, So it was that today I am exhausted.  I went to church and fell asleep!   Fortunately I am assured I did not snore.  So it is that I am sitting here typing this feeling very lazy, but why not.  Tomorrow will be a busy day with blood tests and pottery etc and then the worst day on Tuesday being a witness in court for an harassment case. Wednesday will be a very full day at Hallamshire before I leave with my trial meds so it is better that I  rest now.  

Just so you know quite how boring our day was I should tell you we also tidied under the lift up of our bed!  It contains shoes and fold away travel bags etc and hand bags, much of which is never used.  It also has spare pillows and clean bedding  etc.  We tidied it out and I feel better knowing things are neat now  underneath my body when I rest at night.  Ahhhhhh. It's the little things!!! 

Colin bleached and steamed our shower, a job we do around every three weeks.  We do clean it every time we use it but a steam  clean is always nice to do and very simple.

I am telling you these silly, inconsequential things so you know we are not always doing exciting things as some of you seem to imagine!  We are like you all, sometimes busy, sometimes catching up with boring everyday jobs. 

Pottery class

Well that's how much I know about pottery.  Arrived at my class today, just second one, to find that my pot had not even dried yet!  The process is a long one and I have a long way to go before it goes into the kiln.  Today I wore a mask.  Though you don't see the dust with the clay there is lots of it.  To protect my lungs it seemed sensible for the mask to be in play,  I was ribbed a little that I wanted to pretend to be Chinese as they often wear masks as the smog is so bad where they live and they have brought the custom over here.  My teacher though had told,them a little of my illness so they were asking me questions about it, I am always happy to spread awareness of  this disease. 

This week I have begun a new piece of work, this time done in two halves, like and Easter egg.  I have only done one side yet and will do the other half next week.  I was really pleased with the design when it was taken off the mound for me to see.  Now I think I think I shall do the other side a different pattern so that it will be two sided.  My head is working away with ideas for the other side.  I may put a heart in it somewhere as I think it may be for my sister who has asked me to make her something.  When I told my daughter today I might make something for her her eyes rolled in her head,  I think she believes it will be like the offerings they made for me whilst at  school, very precious to me but she can't bear the thought of having a clumsy effort on display in her home,  I do believe she will be quite shocked at the results, I know I am.

Week after next I am told I will be making a bust, just from the neck upwards, ME, I can't quite believe it but will give it a go nonetheless.   I really am enjoying these classes and already know that I shall enrol for another course after this one.  Some of the ladies doing these have their own painting studios upstairs, they are very talented people.

Right all for now BUT there will be another blog going out immediately after this one.  This was specifically asked for by a few newbies who have read my blogs and wanted to know just what tests etc  were performed once I reached my specialist hospital and how I climbed out of the abys we are thrown into at the start of this ph journey,  For many of you the story of my journey at the hospital will be the same as yours so I am telling you now to save you from reading your own journey.

Have a good day everyone and thanks for reading this blog.  Please share, once again it is all about awareness.

Carole xx

The Good the Bad and the Ugly - but not necessarily in that order!

Our PHA Conference

The good, well that has to be our amazing PH Conference.  Once again they excelled themselves with the way it all worked and the circus theme certainly looked magnificent.  All the volunteers that manned the various stands and did the well being talks after the conference on various techniques of health were amazing I am told, I was too tired to attend any of these sadly and went for a rest after the conference itself.  

How lovely to meet so many old and new friends from our ph world, in particular it was lovely to meet the children we had heard about on our Facebook when talking to their moms.  I met so many new ph people this year that I am not even going to attempt to name them all but I must say it was lovely to spend so much time with Liesl and her husband Stuart, Tess and Tina were a delight to see {twinnies) and Catherine Makin who does not live that far away from me so I did enjoy talking to her and her mom.  Dawn Shelley I can never think of you again without thinking of “mom” as I kept on calling her.   Anna Caroline Bowen was there with her delightful family and I was happy to give a donation to Mark towards his fundraising for the ph society.  What an amazing young man he is and so very lovely to talk to.  We at last saw Harry who was an absolute treasure bounding around with his sister following closely behind, Karen Farminer was there too and It is always a pleasure to see her as she has helped lots of us ph friends over the years, such an inspiration. There are just too many to mention but it was so lovey to see you all.

The conference itself was, as is usual, amazing.  I was so proud to see our Stacie talking about blogging to Ian Armstrong, the chair of the PH Society.  She did very well and I am sure her boyfriend was very pleased to see her on the stage looking as always very beautiful and explaining about how and why her blogs first originated. It is hard to believe that it is such a short time since she was given the gift of a new heart and lungs, she looked the picture of health 

 For me the star of the show was our very own David Kiely, this guy is so very lovely and his talk was informative but also very funny.  I am so proud that he is my own Professor from Sheffield and the one I mostly see.  He has taken calls  from me whilst he has been on holiday and sorted out a problem at my local A and E and the measures he goes to for his patients goes over and above that expected of him.  David is a star and always will be.  I saw him again yesterday in his scrubs in clinic and told him how others with me said they wished he was their doctor.  I am so honoured that he is mine. 

The Ugly

We decided to leave a day early to get to the conference so we could see a bit of Oxford itself.  We had both looked at the hotels and pretty much decided on one with a pool and a gym called Oxford Spires.  For whatever reason we decided to book it the following day after finding it.  On going to bed that night the last thing Colin said to me was don't book the hotel, I shall do it in the morning.  Well he said he said this though I truly don't recall.  So it was that in the early hours of the morning I decided to save him the job and book the hotel.  I found it and looked at the pictures and it really did look nice and I turned to the reviews and they were all complimentary so away I went, or so I thought.  Quite how I will never know but I clicked on a different hotel, well it said it was a hotel, and I believed it to be the one we had decided on, The Oxford Spires.    On I went with the booking and I was very proud when I had completed the task and decided to look again at the pictures.  Imagine my horror when I discovered that I had not booked this one at all but had booked one called Dial House which calls itself a hotel on some sites and a bed and breakfast on some others!  Colin HATES bed and breakfast accommodation and I was dreading telling him.  The price was quite high though being actually more than the FULL price would have been for Heythrop Hall had we have had to all pay the full price for the conference and so I felt all may be well. 

On the way down I did get a few “well I told you to waits” from Colin but my expectation was still quite high but how wrong was I.  Trust me NEVER frequent this place, read my reviews on trip advisor and booking.com.  As soon as we pulled up and saw the grubby curtains hanging from a room, closed, with all sorts of things showing where they were not closed properly should have warned us.  The entrance to where I pushed the bell to gain access to the foyer was grubby and the bell itself looked really dirty I scarce managed to press it.  The door opened to reveal a lady who was maybe from China, in truth I was not sure but a more unwelcoming lady you could not wish to meet.  She gave us our keys and told us our room number without a smile crossing her face and told us not once but three times that we must vacate our room by 10.30.  

Our room was large and overlooked an add on to the hotel with all pipes running down, so we were looking onto roofs, though we could see a tree in the far distance.  The bed was so lumpy and they must have had complaints about it before so they tried to rectify it by putting mattress protectors, NOT toppers on it, not one but two, but they were not the correct size for the bed, being double and the bed king.  The craters in the bed were really bad and we spent a very uncomfortable night trying to sleep. The duvet was really strange.  I asked Colin to pull out the sheet as I am always throwing off the covers in the night but despite this I could not move my feet, it was as if they were in a vice.  I got out of bed to see what the problem was and discovered that all the padding from the duvet had spread itself all around the edges of the duvet so there was none on top of us but this heavy weight all around the edges.  it was awful..  No way was I showering in the bathroom as it just felt grubby so I had to manage with a quick wash and wait till I got to Heythrop for a shower.  

Breakfast from hell.  On entering the room for breakfast it looked very dismal and lacked any warmth.  We were told to SIT so we did do but as nobody came to ask us about our order after a while we went to help ourselves to fresh fruit.  On going back to my seat I realised I did not have a fork so I asked for one and was looked at with disdain, it was quite uncomfortable.  Eventually we were asked what was our breakfast order.  By this time we had seen the full breakfast and it looked grey and unappetising so we thought we would have soft poached eggs on toast.  We asked for them and then realised I had no side plate for toast.  We eventually caught the eye of the only other girl serving, the original scary lady  was obviously the boss and was serving too.  It was this lady that rolled her eyes, gave a loud TUT and went and got me one.  Then the eggs arrived.  I swear they must put poached eggs on as soon as they enter the kitchen in the morning so hard were they, totally unappetising.  Toast fell from the plate that was being passed to my husband onto the tray and was picked up and just shoved onto his plate, he took it off and laid it on the table.  No way was he eating it as we could see the tray was not clean.  We watched as a table was “cleaned” with a j cloth that should've been consigned to the bin many sessions ago.  It was just sooooo bad.  We were leaving straight after breakfast and bumped into another guest who said she too had a very bad back from the state of the bed and couldn't eat the breakfast it was so unappetising.  

The problem is though that they will continue to collect their £118 a night as the hospital was just up the road so people will need to stay close by to family or friends.  It was truly ugly and never would we return.

The bad, well sort of!

I went to my hospital yesterday for evaluation to begin my trial next Wednesday.  It all depended on the results of my right heart catheter, were the results too good then I could certainly not be considered a suitable candidate to trial.  I had been what I call “off” since last April as I could feel myself losing my battery pack earlier than ever so to speak.  Anyway the badness is that it was as I had said all along, my heart is showing more signs of damage and my levels in my lungs up by another 11 since the last time I had a rhc.  I knew this would be the outcome though my MRIs had not shown significant signs of deterioration, the rhc said it all, there was deterioration.   I am not too concerned though as I shall trial the drug, it may well work and if it doesn't then I shall come off and change my meds to either another oral one or, if necessary go back on the hickman line and give my heart a rest.  And so it is…… I go back next Wednesday to begin my trial of the new drug, first of its kind to try to stop the protein that destroys our lungs, it is not an endetholin receptor antagonist as the others are  so I should maybe feel the difference soon IF it works and IF i am on the drug and not the placebo.  As it is a double blind study even David Kiely will not know.

It was so nice on going into the theatre for my right heart catheter to see one of the nurses from my ward and she smiled and told everyone in the room that I was their best patient and always had a smile on my face and l always tried to give encouragement to the other patients.  She said that they knew on the ward a few days earlier that I was to be a day patient and all said how well I was liked and how much they looked forward to seeing me again.  Such a pleasure to hear this as I do my best to always be thankful for the care I receive and always try to help others. This was something our dad taught us when we were very young and we saw how he was liked when in hospital for four months before his death.

Bits and bobs.

Finishing on a good note.  Once again I have been given my own designated driver to my ph hospital after the fiasco of last time and so I was happy to hand over the flapjacks I had made for Dean, my driver. However on reaching my ward so many nurses asked which delights I had brought in today and I had to tell them I had not baked at all for them.  The conference had left me tired and what with that and helping out my elderly neighbour I just hadn't the strength to bake.  There were sighs all around and they said they always looked forward to my  appointments as they loved the cakes I made that they enjoyed with their cups of coffee!  See I always knew it was cupboard love! I had better begin another bake off and start freezing as I shall be gong to the hospital once a month now for seven months, then every three months for two and a half years!   This is if the trial is proving to be worth carrying on with. 

 Daniel  who talked to us at the conference about stem cell therapy explained to me that it cost on average one and half BILLION dollars for each medication from trial to completion, yes you read right BILLION not MILLION and of these generally 39 will prove to be of no use to us and the 40th with be the hallelujah moment.  No wonder our drugs are so expensive and in truth they may never get their money back but they do make a lot on other drugs. 

We went to the hospital with Colin to give blood after we collected Izzy from school.  What a softy she was, so unlike her mommy who used to sit on the edge of the bed for many years when I gave blood and called out "faster mommy" as she saw that with each squeeze of my hand the blood flowed into the waiting pouch, She had been so excited looking forward to seeing her grandad being “stuck with a needle” as she called it but the reality was she hid her head under her cardigan!  What a wimp!!!!

Back to our place after the hospital Izzy wanted to "make a book" so of course granddad obliged,  out came all the paper, the thick red cardboard for the cover and the big slicing machine to cut all the papers neatly.  Table laid with the craft table cloth work commenced . Very carefully Colin cut the pages to size, so neatly, all measured correctly and then glued and bound the book for her.  It looked really good.  Then she, of course, wanted grandad to draw on the cover a picture of a whale so out came the iPad and whales were typed in, plenty pictures to choose from so she decided on the one leaping out of the water.  Undaunted granddad set too to draw said whale taking a great deal of time to get it right,  the end result was really good and Izzy loved the book. It was then time for bed so book and pen went with her for a few minutes before sleep time,  What did she do, she drew over all the front cover of this lovely book where granddad had spent an endless time making sure the whale looked as good as could be!  Grandad looked a little shocked when he saw it but didn't say anything, just walked away with a wry smile after a last cuddle before sleep! 

Now morning and Izzy has just GOT to go into granddad for a cuddle.  When she stays here here takes over grandads place in bed and this is our cuddle time and story time.  Grandad gets banished to the other room to sleep!  I can hear them now discussing what they will do on Saturday when we have her for the day as her mommy is working. The following weekend we are taking her away overnight to a hotel with a swimming pool, here they will both spend hours having a good time in the water. She is telling grandad what she will pack for our weekend away. So lovely to have her here. 

Oh and I forgot to tell you about my pottery class.  It was brilliant, I enjoyed it so much and have a bowl ready for firing that I shall paint next week. I was so amazed at quite how much pleasure I got out of working with clay and cant wait for next Monday.  One day I shall post pictures, quite what you think may well be another matter!

Go well everyone, thanks for reading and I hope you found some enjoyment out of reading my blog.  xx   

A great potter in the making, probably not!

I have been getting some really nice comments about my blogs and this is so lovely.  I was scared that people would just see them on their pages and push past them and in most cases this appears to not be  so.  Thank you so much for taking the time to read and thank you for these comments, they do make my day.

Will these be the pressies from hell?

When out with some of our friends yesterday we were fortunate to meet with one of our neighbours who is an artist and she was about to go into her studio, part of a whole complex of arts and crafts.  Linda was very welcoming and asked if we would care to look around and of course we all said YES.

What a super time we had.  We were amazed at just how much is being done there.  There was a section where people could be taught the art of creating the most beautiful glass jewellery, so pretty we could hardly believe that we too could be shown how to do this.  Onto the arts rooms where they had beginners and then progressions up to the high level my friend is now at.  Other rooms were taken over to the still life paintings, one of our friends said he would volunteer, very much tongue in cheek.  My husband said he would too were he to be able to be holding the hand of another model, a very beautiful naked woman!  We then progressed into the small one man studios where we saw so many different styles of painting, so diverse and all so beautiful in their own forms.

On visiting my friends station she was not doing art at this moment but instead pottery.  We were all stunned at the beauty, not the normal pot vases and mugs going on here but intricate hand painted bowls and busts of people, animals in all shapes and sizes and everything just sensational.  I was shocked, as indeed we all were at the beauty of these and almost fell over in surprise when she told us this was only her second term of pottery.  Feeling encouraged by this, though she is in fairness arty to begin with whilst I am more a clod hopping kind of girl I decided to sign up. Classes begin mid November.  Bet my family are dreading this as they will be sure I shall bombard them with clumsy attempts of making pretty things.  They need not worry.  I shall be happy enjoying the experience.  Should I be fortunate enough to throw anything worthwhile I will most likely keep it for myself as a testament to what man can do if they really try!

We were also told we could try a session of the glass making and for sure I am going to attend this one,  So pretty were the things and I am assured that I shall leave with something at the end of the session,,,,,,,,, watch this space.

Colin too was impressed and he is going to enrol on a course of sketching.  He felt he could never do art but a holiday whilst living in Spain with another member of his walking group proved otherwise.  His friend, also called Colin, taught him a great deal about how to see perspective and to sketch and he came home with some very credible drawings.  I feel sure sessions with real artists helping him to see through an artists eye will help him tremendously and we both look forward very much to these classes.

The beginning of my ph journey after diagnosis left me just lying on the sofa for a year, yes feeling sorry for myself I admit but in fairness waiting for the meds to do their work.  Take heart newbies as to where I am today.  Fighting ph, of course but living a life too.  I am doing, or going to do things I maybe would not have ever got around to doing had I not had ph.  The fact that my illness took me past this art gallery with good friends that day is a fact.  Were I in really good health this would not have happened as the group I was with would not have been formed.  Not only would I have missed out on such opportunities but would have missed out on the friendship of this so lovely group.  Try to look for the silver lining, there generally is one.

Two minute video to help the newbies

As I  always want to help and encourage the newly diagnosed I was so pleased and delighted to be asked by our PH Society if I would take part in the raising awareness for ph.  This for me means a two minute video, I feel there are to be five of these in total.  These videos will hopefully encourage the newbies to see that there is life after the diagnosis.  I hope I use my two minutes well and that what I tell them about my experience of life after ph helps them whilst living in the world of ph.  I feel sure it won't be forever so convinced am I that the cure is around the corner.   On the Friday of the conference weekend I am to meet with Shaun Clayton who is the Director of Membership Support and Andrew who is the cameraman.  I don't photograph well or video well so this will be a bit of a trial for me who tries desperately to avoid cameras but in this instance I am so happy to help.

Weekend away with good friends.

There is nothing nicer than being in the company of really good friends.  Ones where I can feel comfortable if I am having a bad time, ones that have no great expectations of me and understand my condition can change so suddenly.  

So it was that Colin and I and four of our really close friends went away for just one night to Sherwood Forest.  We stayed in a nice hotel with enormous rooms and decent furnishings.  On the way down we stopped off at Hardwick Hall for lunch and to look around the house.  Lunch was amazing but the house, oh those stairs!  I was expecting some but just how many I could not have comprehended.  Did I get up them all, yes I did, did I pay the price, of course I did! The house was not to my taste being not cosy at all and filled with tapestries everywhere.  I could not have ever visualised myself living here though I did love the kitchens {woman know your place}  They had a lot of apples on a table of different varieties and a lady cutting us off pieces that took our fancy.  We had never heard of any of these apples but believe me the blenheim ones were so delicious.  We were told that we could walk into the orchard and pick a few so of course we tried.  They were so high on the boughs it was impossible and when I walked under one tree and enormous one fell on my head!  It was diseased though so I could not even have the joy of eating it, it was not fit for eating.

We decided to go on to the Tram Museum on the following day at Critch.  Just before we arrived it happened, yes the nose bleed again.  It was everywhere and it was what is called a rolling nosebleed meaning the drops were huge and thick and fast.  I must confess to both of us beginning to panic as I had, on previous occasions, been admitted to hospital with such bad bleeds and had to stay in overnight.  I used up all the tissues and hankies in the car and then resorted to the newspaper.  My trousers and jumper were soaked and Colin was just about to take me into a cottage hospital when I felt it slowing.  Just as we reached the car park of the museum it stopped.  My friends came to the rescue with more tissues and wet wipes as my hands and face were covered.  Not being daunted by this though we continued into the museum and had a really lovely time.  Homeward bound we decided to head off over the Strines, a really lovely way to go home with the beautiful vistas all around us.  We all had a thoroughly good time and are so looking forward to our next jaunt.  You can't beat good friends.

Great news for our ph community

We heard that Steve Horn is home after his successful second operation to remove the clots in his lungs.  Steve and Aimee have an integral place in our Facebook community and I have had the pleasure to have met them at a conference.  I am so pleased and relieved to see he came through this operation in such a great state and he is now where he belongs, safe in the bosom of his family.  As a father of two young children there will be huge relief all around.  They are hoping to attend the conference too so that will be so lovely to meet up with them again.

Oh my word what horror is this! We  don't feed our families this!

Reading the newspaper this morning I came across a snippet and a photograph.  This showed the tail of a furry animal that was tipped out of a bag of frozen vegetables bought from Iceland.  The mom was cooking dinner and as she looked into the pan where she had poured  the veg she came across this horrible sight.  In shock she threw them across the room.  Hopefully nobody was in the flight path but it has put me off frozen veg for the time being.  Of course the mom complained to Iceland from where she had bought these veg.  She received an apology and the store asked her to return the veg and the packaging plus the foreign object.  Bet she never buys that particular brand again.

Must go now as I can smell the flapjacks cooking.  These are for my taxi driver Dean who does an amazing job when I am trialling to get me to and from the hospital stress free.  He takes a big weight off my mind on the early morning trips and then he is always around to bring me home, well worth a few flap jacks wouldn't you agree.

Have a lovely day and hoping to meet up with many of you at the conference this coming weekend.

Carole xxxx

New memories and hopefully encouragement for the newbies!

Information and Encouragement

We have been seeing newly diagnosed patients with ph on Facebook recently who are, and rightly so, unsure of the world of ph.  Of course they always fear the worst, maybe it is because they have been researching in the world of Dr Google.  Though we are all warned NOT to google ph I feel sure we all did.  How well we wish we hadn't as just reading the so outdated research terrifies us.  How I wish we could get rid of the old and just have the new, the encouraging data that is out there for all to see.

We need to remember that fifteen years ago very little was known about ph but that is changing fast.  Now I am sorry if I am repeating myself a little from older posts but it hurts my heart when I read of how scared these newbies are, after all we have all been walking in their shoes.  Here in the UK we have a Pulmonary Hypertension Society and we can join for free.  It has an amazing wealth of information and it also has a ph forum which we can join and on here we can connect with people to talk about anything, ph related or not, share our fears and dreams and encourage others who are asking questions.  I would advise anybody who is NOT a member to take up the offer of free membership.  It may be that we feel we know all there is to know about ph, of course we don't, but the point is we can help the ones who know little, if anything about it and I feel we owe it to them to help as much as we can in answering questions and giving support.

Telephone number for Pulmonary Hypertension Society UK is  01709 761450

This is a number to keep in your phone books.  The advice they offer is so helpful and they can get you onto the forums needed.

For most of us the beginning of the ph journey is hard, and I like to explain to others that though the journey can be really tough initially hopefully the medicines can help them get back on a more even keel. Now I know not all  ph patients respond to the medicines and that alone saddens me.  Even with the thought that new medicines are coming out all the time it does not make the ones not responding feel any better.  I am always encouraged to read of all the research now going into ph and how it has come on leaps and bounds,  in this way a medicine that does not suit one may suit the other struggling.  Above all I really do believe positive thinking helps us and trying to stay strong, not always easy I know, but there is strength in numbers and we have, as mentioned above, the ph forum and our Facebook page where we try to help one another with this disease amd this hopefully helps  us to cope.  A better understanding of the disease, the stages and what the medicines do is always good too.

When we read of a death of a ph patient we all react with horror, sorrow and many other emotions.  In every illness there will be deaths but by the very nature of our illness being so rare the death of one of our ph family  touches us all so deeply.  We are a small family and it hurts to lose a member in this way . Our hearts go out to family and friends who have lost a loved one to this disease. I have said before and I say again we owe these people so much.  Lessons are learnt about this disease from the ones who lost the battle, we owe them All so much and we should never forget that. They deserve to stay in our memories. It is the very least we can do.

MarcMary Dyer has begun posting on Facebook now.  Maybe she posted before but I just read her story of being so very very poorly but after 18 months she is actually going to night clubs again!  Now if this isn't a story of hope and encouragement what is. Never despair.  Together we are strong and can fight for a decent life. 

More tales from our memory box.

When we were on our travels through Cornwall and Devon is is fair to say that sometimes I was very sluggish going about my activities!  It touched a cord then when we went  into a shop to see if we could find something to remind ourselves of this and also the fact that I eventually managed to do everything we set out to do.  Well there it was!  A slug made out of glass with huge eyes just sat there looking at me, it had to go in the memory box and so it did.  Not sure how well the picture comes out but I think it is rather cute. 

Another memory in here is a very special memory.  It belonged to a little boy, {long since a man as now in his mid forties}. It came out of a cracker he pulled whilst surrounded with family at christmas.  It is just a tiny little piece of a train.  He was only allowed to play with it for a short time as fear of it getting into his mouth was very much to the forefront of our minds. When he left I kept the train and over the years it was kept in a special box but when the memory box came into play it just HAD to belong in the box.  If this person reads this I want him to know that he was never forgotten, always in my heart and head. 

A colourful tiny mask rests in here, great memories of one of our many trips to Venice, I love this place and we knew it would just fit perfectly in the box.  I love the colours and the hat is made of merano glass.  Venice is well known for making this beautiful glass. They also do the most amazing masks and who could ever leave Venice without one.  We bought a big one with lovely black feathers.  It now hangs on one of our walls.  It is a talking point when new people come to our home. 

Colin has posted some pictures on here.  Can you see the teeny tiny boxes for a dolls house.  I mentioned before how lovely they are with jewels and scissors and mirrors, hairbrushes and perfumes in it.  Now you can see why we love them.  The pound coin is so you can see just how small they are.  I love the train so much too. 

Just everyday stuff!

Nothing exciting happened this week.  I baked a christmas cake for my ex boss.  In truth they are like an extended family to me having worked for them for around 24 years.  It was a total different job to the one I had had previously but it worked and we built up a relationship built up on trust at the beginning to a real love for each other.  We share each others good news and bad news alike.  A nicer family you could not wish to meet and I am so proud that they are our friends and a part of our lives, I love them all so much.  Not everyone can say that about their employers so I know I was very fortunate.

I took my neighbour, aged 86, out shopping as he was tired of seeing just four walls.  All ph friends can relate to this.  He had had a tummy bug and was confined to his house for days on end.  It was awful that on leaving the supermarket his pants fell down.  Fortunately he had a long coat on and nobody but us saw what happened but it brought it home to me how frail he had got, how much weight he had lost and how I must help him to build this back up.  To this end I shall ensure he drinks complan, making it for him myself if I have to do.  I truly love this guy and so want him to be with us for a long while yet.

I have been trying online to buy a book written by Sue Dietschmann.  I am struggling with this I must say.  I feel I shall have to go to  my Waterstones store to order it.  This book I know will make you cry but I must tell you newbies that it is rare for this to happen to a ph patient.  Sue had a daughter who died at a very early age from ph.  She was the mother of an 11 week old baby and there had been no talk or symptoms of ph.  It was related to another very rare illness so not a straight forward ph.  The sadness of Sue finding her daughters lifeless body bears no thinking about but this lady has touched me so much when I read her post.  I want to get closer to her and I feel reading this book will help me to do this.

And so the end and hope you enjoyed my blog.  If you did please share it.  Raising awareness of ph is so important.  If we can help any way we can we need to.  If we can reach out and get another patient with undiagnosed ph read this and force the doctors hand to search further we must do this too.  

Have a lovely rest of the week!

Carole xx

Just chilling weekend - and why not.

At the Ayrton household we seem to have been busy busy busy these last few weeks. What with our holiday, lovely but tiring and hospital appointments for both of us there seems to have been very little time to sit back and relax.  My mobility scooter was a blessing but even then I was tiring out very quickly even when I was on it!

This last week we went to Royal Hallamshire for what I believed to be bad news, i.e. being  told that the trial was off.  I was so wrong and indeed I even had some of my trial exams, more to follow.  Sitting down with my specialist David Kiely was rather daunting as he went through the conditions needed to trial and signing the forms.  When I trialled the DCA two years ago it wasn't so daunting as it was a drug that was currently being used, though for a different condition.  My doctor went to great pains to explain that this was something totally different.  This drug was a new one and had not been used on ph patients at all.  Phase 1 had been tested on paying HEALTHY volunteers but they have no idea how it will work, or even if it will cause problems for patients with ph and that, in conjunction with the very potent drugs we are already taking,  it is fair to say I did wonder if I was doing the right thing.  There is nobody else at my hospital trialling this drug and indeed I am only one of five in the UK to trial it,  The other 118 patients are mostly from the USA.  There are 119 people in total taking up this trial.  Two spots were given over to the Hallamshire but only one, myself, have taken it on.

I was told they have no idea what may happen when on this drug in the future too.  I understood this as with DCA I have ended up with exfoliative celitus and neuropathy so yes, I do understand there may be a price to pay but what do we do.  Refuse to trial potential new drugs, that can't work or we will never move forward,  All I can do is hope for the best, put my trust in my A Team who will check me and take care of me along the way, stopping this trial if they see too much damage going on.  I am also selfishly hoping it works to help me live life in a better condition that I am currently doing.

A long, long drive.

The day following my hospital appointment we went down to Birmingham to visit the Motorhome

Show.  This was a hard day, my batteries were drained and I felt so tired it took me all my time to manoeuvre my scooter around,  I just wanted to go to bed and sleep.  Though we looked at all the motor homes in show we both agreed that as yet we have not seen one that betters the one we already have so we decided not to change it until we see one that can beat it.  As the one we have is still under warranty it is not a problem. I don't travel well on long journeys and this certainly took it out of me.

Weekend away for the guys so just chilling! 

Friday Colin set off to Budapest with his friends for a weekend,  seems a long way to go but once a year a member of the group has to pick a city and do all the organising.  It is a place Colin, and indeed most of the lads have not been to so I feel sure they will have a lovely time.  I went to my granddaughters school to see her receive the head teachers award for good maths, a very proud grandma, and then out for lunch and then went home to rest and I felt I needed it,

Saturday I did very little but a bit of shopping for my elderly neighbour who was quite poorly.  I was very lazy and bought myself a ready meal from Marks and Spencer and was in bed early, though not to sleep, sleep eluded me and if I slept two hours it was as much as I got.

Sunday, church in the morning and then I must confess to going straight to bed and here I am whilst typing the beginnings of my blog,  Colin should arrive home about 11.00 pm and I hope he does  not make too much noise putting his things away!

What a bloody mess for a Monday morning!

Woke up after quite a reasonable night.  Colin arrived home at a respectable 11.00 but he was tired and as I was too we decided to talk about his trip to Budapest in the morning when we were both rested.  I woke before him and put a wash on of his dirty clothes from the weekend.  My husband just looks at clothes and then into the wash they go.  Hence we had a huge pile of the things he had used in Budapest, some he would have only worn for around an hour or so but then into the wash they went.  I am all for being clean and fresh but this guy takes the biscuit, honestly.  I have seen him put a t shirt on and then change half an hour later and that shirt is in the wash, even though he may need to put another one on when he returns from wherever he felt the need to change. Anyway I switched the washer on and went back to bed to talk about his trip.  I turned over in bed and felt it, the dreaded nose bleed.  A little blood goes a long way and in this instance it went through to our mattress protector, which served its purpose well and indeed protected the mattress.  Now I am left with sheet soaking and two more washer loads of washing to go in.

Present for me or him indoors.

Colin had brought me back a present.  We don't do presents for such short trips so I was intrigued.  He said he bought them for me to use up his Bulgarian money at the airport.  It was a box of chocolate things of all flavours.  I don't really eat chocolate so I ask you, who gets the present!  He also bought for Izzy a rather intriguing little wooden box, very pretty that has a secret way of opening it.  Very very clever as it takes some doing to find the hidden key.  I would never have found it in a million years.

Now I am off for my routine bloods to my local hospital. On Thursday I have my dental appointment followed immediately by my flu jab.  I rang and asked if I was allowed flu jab due to trial and was told yes.

And so begins another riveting day (not) in the Ayrton household.

Enjoy your day xxxxx

Happy days are here again

We are halfway through our holiday around Cornwall and Devon in our motor home.  We were blessed with amazing weather for the first week but as I am typing this it is a wet and miserable day outside, though I am toasty and warm in my very comfortable bed.  We are just planning where to go today as we will be leaving our family who live here in Poole to begin our slow, steady way home, stopping when and where we please.

Our first stop on this journey was in Bristol where we went onboard the amazing SS Great Britain for a look around.  This was the first ship of its kind to have a metal hull.  What an experience this was.  We were taken on a journey back through time and saw how the people travelling on this ship heading for a new life in  Australia had to cope.  It shocked me how even the wealthy lived in such tiny cabins, not much bigger than the poor ones.  The life on board though was then very different in that the food was so poor for the ones in steerage and quite good for the higher echelons of society,  it shocked me to see how many live animals were on board at the beginning of the journey, though those in steerage saw none of this meat

If babies were born on board and died they were just thrown overboard.  The rich could go on the top deck to take the air but the steerage were not allowed this privilege.  There was also a room set aside on this ship for just the ladies too!

One day the crew were shocked to wake and find the captain had committed suicide.  He had locked himself in his cabin, moved the lamp that hung near the porthole, also removed the screws to said porthole and let himself drop into the water below!  So many stories to be read aboard this ship.  If anyone is interested I am sure you can google it.  We loved this experience immensely.

Well we didn't expect that!

Whilst we were heading to Salisbury on our motorhome journey the phone rang.  I saw it was an unknown  number and expected it to be from Health Care @ Home so was surprised to hear it was my trial co-ordinator.  She had been asked by my specialist David Kiely if I could go the the hospital immediately for a right heart catheter as he wanted to bring my trial date forward by a month.  I was shocked but pleased to be told it would be earlier than the expected date but there was no way I could get back as we were too far away. Anyway the upshot is that I am now going in on Tuesday for a couple of days for all the tests needed to be done before I begin the trial medicine to take place.  When I asked today why they have brought it forward I was told the date for the trial is closing.  So I shall head off in my taxi and hope that when I return home it is with a bottle of the trial tablets. Then, of course, I hope it helps with my condition.  

I heard we lost another two patients to this terrible disease. One is called Sarah who I don't know but one is Kim  Pierce, a really lovely lady who helped others with ph often. This is why I trial.  I am fortunate to still be here five years after diagnosis but I am aware that the disease is progressive.  Some do well with the medicines to stave off clinical worsening but others do not fare so well and lose their fight for life.  Others still live a life but with oxygen and wheelchairs being part of every day life.  All any of us want is the life we should have had if we had not been stricken with this disease. If I can be part of helping to get the cure for us by trialling then it is worth all the hassle that comes with it. 

Old Sarum

Also we stopped to look at the ruins of Old Sarum, a castle built by William the Conqueror.  King John lived here and indeed Henry 1 and Henry 11 all used the castle at periods in time.  Sadly it was allowed to fall into disrepair and stones were taken and used to build other fortresses and homes over time,  still there is quite a lot to see and we could get a flavour of the size of the place and in such beautiful surroundings.  I can't be alone in touching the stones and wondering who placed this one here, where did he live, what was his home life like and so forth.  When looking at ruins I always think of the people that built the castles, not the people that lived in them, that is reserved for when I look around castles that still stand and are furnished.  

When I look around castles such as Warwick Castle I see a different picture.  I see the wealthy family living within these walls and the lives they led,  so different to the servants that cared for them.  The furnishings are often lavish and the paintings alone would have cost a pretty penny.  On looking around these places I also like to look into the kitchen and the laundry rooms.  So much we take for granted these days and I must admit I am so pleased we do have all mod cons.  Just looking at the apparatus used for the crimping and the ironing of the tiny pleats so often found on ladies blouses makes me so relieved I live in modern times.  Though I do starch my linens the job is nothing like as arduous as the servants had it then.  I do like to see a little history on holiday.  We are so fortunate that in Great Britain we have so many wonderful places preserved for us to enjoy.  We are both members of the National Trust who do such a wonderful job in restoring and taking care of these amazing places for us, as indeed do English Heritage and all the other associations we have to help us keep these places going for all to enjoy.

Oh but the SMELL! 

When we are away we try to catch buses where we can,  it's so nice to travel on all the country roads without giving a thought as to where we will park in the towns.  On visiting Salisbury we did the same and enjoyed our walk around the town.  On going back to our motor home though it was not the enjoyable experience we had when going into the town.

A man got on the bus and sat opposite us.  It was apparent immediately that he was very scruffy, maybe he was homeless, who knows but the stench emanating from him was sooo horrific.  It actually made us both gag and we had no escape, the rest of the bus was full.  I know there was nothing maybe he could do if he was homeless.  Where do they wash their clothes or have baths.  I haven't really given it much thought but it must have been dreadful for him too, or maybe he couldn't smell himself.  Now I am fortunate to live in a decent place with enough money to stay clean as indeed most of us do.  It did make me reflect on what happens to these people who are homeless. Is it through choice, through drinking or being on drugs.  I can't know the answer to why this man was as bad as he was and though he made me gag I must confess I also felt sorry for him.  Life  on the streets must be very hard, it's not something I would wish to do so I try to be tolerant of these people.  Who knows, maybe it could have been me had I be born into different circumstances.  It's a sad world.  

Exercise and ph.

All of us read all the time in the papers how absolutely essential it is for us all to exercise more,  now I know it's not so easy for us with ph, we can't just jump on a bike and ride up hill and down dales, unless we have mild ph.  For some of us it is exercise enough just to get dressed or washed each day.  However we do know the importance of exercising if we possibly can.  Even ten minutes a day is better than none.  I know I get encouraged by our own David  Stott, a ph patient who regularly runs and indeed, he smashes the six minute walk test!  We saw how on the death of Hazel Roberts last year he wrote her name on his vest whilst running to raise money and awareness for ph.  I have a ph friend in America called Katty Perazza who runs at least four miles daily, despite having suffered no less than three heart attacks before she was discovered to have ipah.  She was determined not to let ph rule her and indeed it seems she is doing a good job of being the boss in her fight for a stable life whilst living with this cruel disease.  Both of these ph friends inspired me to take up walking eighteen months ago, despite being scared of maybe making my heart worse.  I managed a year of doing really well before a deterioration in my condition forced me to curb my activities.  Maybe, just maybe the trial might bring me back to the health I need to succeed in walking again. 

Right enough of my ramblings, I will get this  latest blog out and hope I haven't bored you all.

Keep well and will speak later once my trial has begun.

Carole