PH Day 2023

HOW MANY TIMES WILL WE SADLY NEED TO SHOW THIS CANDLE AS WE LOSE YET ANOTHER TO PH. 

PH FRIENDS. Let us play our part in the fight to be diagnosed. 

Recently we attended our mini conference in Sheffield.  Since Covid we have not had a get together like this so how wonderful it was to see old friends and new.    

Our talks were varied and I found them very interesting indeed.  I certainly felt I could push myself more in the respect of exercise whilst not even leaving my home.  It’s not difficult and worth the small amount of effort it takes. We had a lovely lady who had flown over from Ireland to talk to us and to show us graphs of the benefits that just a small amount of effort made so definitely on my list of to do things each and every day.  

For me there were two stand out main talks  - one of those being that we discussed how long we were all waiting for diagnosis, the longer of which makes for poorer outcomes for us and everyone that was talked to agreed the frustration of waiting whilst attending doctor appointments after doctor appointments and being told the same thing..  It’s in our heads, nothing wrong with us or you have asthma ( even though the sprays NEVER MADE A BIT OF DIFFERENCE). You are lazy, get out and do more.  The list is endless as my ph family all know,  Oh the sheer frustration of banging our heads against a wall trying to get someone to LISTEN - JUST LISTEN  to us when nothing you give to us works and our hearts get even more damaged and our lungs continue to struggle to take in the air we need to live.  So how do we get it across to those very people we trust to help us to get a diagnosis and the medicines we desperately need quickly, before more damage is done and before more people die without even getting the diagnosis that could have extended their life.  I have often wondered just how many people were dismissed in this way and died and I wonder what the postmortem results showed. 

Like lots of you I have made friends with my ph family only to lose them to this illness.  The sense of pain seeing them suffer is overwhelming when now we KNOW that most of us could have better outcomes if the doctors that we saw at our GP surgeries had taken us seriously and asked for more testing than they themselves were not capable of carrying out.   

Our lovely media team have worked hard in respect of this, working with specialists and doctors they have made videos of patients  talking about their own personal journeys.  As a ph patient it was hard to watch, these are real people and I know personally the heartbreak of the journey to getting diagnosed.  These are the very people, myself included talking to doctors begging for help. In fact when we constantly get dismissed we end up almost screaming for help with none coming , making us feel we must be going mad if the very people we trust with our health just dismisses us like this. I have had the privilege of seeing these videos and I must confess both me and Colin cried.  It took us back to the horrors of the years before diagnosis, knowing something was happening yet being told it was asthma, 

My belief is that these videos of US ( meaning ALL my ph family worldwide as we speak for all  )  will be the voices that carries this message to doctors and specialists and is to be shown to physicians and researchers at a conference in London shortly and then at a round table event where it is to be shown to industry and healthcare professionals - being specifically held to show and discuss the issues we all have had and those still to be diagnosed by late diagnosis next month. Eventually it will be on YouTube and one can only hope the message spreads to all those in the medical world so more doctors can see we have real and very dangerous medical issues and move us along to professionals we need in order to get a better outcome,  

I myself was blessed to be diagnosed whilst abroad by a specialist in lung conditions who had never seen a patient with this very rare condition but had read about it. He quickly diagnosed me and before I knew it I was on a ward in my home town whilst they liaised with Sheffield who quickly admitted me and then I found my second home,  Hallamshire is where I am treated and where I KNOW I am listened to because this is their speciality.  I can only hope and pray others that were like me frustrated with how they felt but never being listened to find the answers and the treatment they so desperately need .  Let us spread the word far and wide  PULMONARY HYPERTENSION IS REAL AND LIFE SHORTENING SO PLEASE LISTEN. 

These videos will be shown on November 3rd where we all do our best to raise awareness about this rare disease,  When you watch them I hope you too see how hard our teams work to raise awareness and let’s hope that our voices are heard far and wide.

Research Video on the importance of trialling 

My health seems to be doing ok right regarding my ph now so I will take that.  I still put it down to the denervation I had as a trial and am so blessed to have been offered the chance to have it done. Research plays such a huge part in my life and I am always grateful to be given an opportunity to take part in any trial and study.  Even as I write this I am part of three studies which means that I have monitors working 24/7 and any issues can be dealt with quickly and efficiently.  

Each and every time I take any medication I give a silent thank you to the people that trialled the meds I am taking helping to extend my life and live to see family and friends that I love.  Some of the ones that trialled drugs for our condition are long gone from this earth but still I am getting the benefits of those agreeing to take part in the trials and studies,  My heart gets overwhelmed at the love I have for them and though I never met them they put themselves out for us all and trialled   I trial and whilst I know all trials do not come to fruition maybe in the  future others will be feeling exactly as I do whilst taking the meds that keep them alive - giving thanks to those that trialled their medicines,  

At our conference we had a talk about research from a lovely doctor from Cambridge and the importance of trialling and that we needed more patients willing to trial, Now it is not mandatory to trial but there are many benefits to yourself as well as to the future of people with ph.  To this end one of the videos made to be shown to the health professionals etc. is about trialling.  May I ask that when you see this video you take a moment or two to consider if you could trial or take part in studies,  I can promise you that first and foremost your health will always come first whilst doing research and who knows - you may become the first person to be cured of this disease by trialling the drug that not only extends our life but cures us - imagine that !!!   Somebody has to be the one, could it be you. 

If you feel you can trial then please do, all it takes is a word to your specialist doctor and he/she will see if there is one suitable for you.  Not everyone will be suitable to take part in trials but very very many of you will.  Please think about playing your part in research the next time you take your medication, think about what went into getting that one to you, the part you can play in research and hopefully getting more meds and yes THE CURE FOR PH,  It can’t be done without real people suffering from ph.  The circle needed to reach that stage would have a vital piece missing and these are the ones that trial meds for ph so the circle could not close and the cure or the meds needed to slow this down not be reached.  IT IS VITAL WE DO ALL WE CAN TO FIND A CURE OR SLOW DOWN THIS DISEASE.   Please please we need more people involved in these trials. Can you play a part in this,  I do hope so.  

Laughter after the tears. 

Our families know we are not having funerals ( preferring the ones where our bodies just get taken away and burnt without the cars and churches and the eulogies etc ) but whilst all sharing a meal on Saturday night all the daft things I have done throughout my life made for good joking and laughter around the table.  I said to my daughter “ see all these things you have thought I was mad to do or silly etc will be all the things you will remember me by at my Celebration of Life party. It was funny to remember where I was and what I was doing at the time to create such funny memories for my family.  Not for a while yet though hopefully.  

My daughter and her husband tried a drop of my home grown plum gin.  They declared it gorgeous but very strong.  I did warn them so I think they will be taking something with it rather than neat but nice to know our own plums created such a flavour.  

An accolade at last

Yes I have an accolade.  Whilst this won’t mean anything to you, for me it is the best as Izzy looking round the dinner table pointed out to each and everyone their place in cooking. I was declared the very best chef which made me smile and made my heart warm.  She isn’t too friendly with me right now, we have had a few weeks of tiffs.  I believe I am correct and she believes she is.  However she thawed just to say I was the best chef.  Tonight I cooked for her and her friend before they went to football practice.  Whilst she was happy to take the food and said thank you she thinks I am weird for wanting her home straight from school.  Sorry Izzy if I care too much but these days a young 13 year old is not safe to be trolling the streets.  Wait until you have children of your own.  Anyway your mom says it too so it’s not only me.  Colin of course is more laid back so he is good grandad and I am weird grandma. I will take that if it keeps you a bit safer for a while longer.  One of my friends granddaughters was trafficked at Izzy’s age and became part of the group of girls being used by those in Rotherham.  Thankfully she came through it but not every story has an happy ending.  Life was so much easier when she was younger.  She was so compliant but she has done what we all hope children get a chance to do, grow up.  We can’t keep them young more is the pity.  

So quite an emotional  ride for me these last few weeks,  Still I am here to tell the tale and so give thanks once more to my A Team at the Royal Hallamshire, Ward M2. You all know I love you.  I will end this now  and try to get it out today before November 3rd which is our PH Awareness Day. 

In the meantime I send warm love to each of you and thank you for reading this.  

Carole,xxxx

DOCTORS WORLD WIDE. IT IS TIME TO WAKE UP AND LISTEN TO US

PH FRIENDS. Let us play our part in the fight to be diagnosed. 

Recently we attended our mini conference in Sheffield.  Since Covid we have not had a get together like this so how wonderful it was to see old friends and new.    

Our talks were varied and I found them very interesting indeed.  I certainly felt I could push myself more in the respect of exercise whilst not even leaving my home.  It’s not difficult and worth the small amount of effort it takes. We had a lovely lady who had flown over from Ireland to talk to us and to show us graphs of the benefits that just a small amount of effort made so definitely on my list of to do things each and every day.  

For me there were two stand out main talks  - one of those being that we discussed how long we were all waiting for diagnosis, the longer of which makes for poorer outcomes for us and everyone that was talked to agreed the frustration of waiting whilst attending doctor appointments after doctor appointments and being told the same thing..  It’s in our heads, nothing wrong with us or you have asthma ( even though the sprays NEVER MADE A BIT OF DIFFERENCE). You are lazy, get out and do more.  The list is endless as my ph family all know,  Oh the sheer frustration of banging our heads against a wall trying to get someone to LISTEN - JUST LISTEN  to us when nothing you give to us works and our hearts get even more damaged and our lungs continue to struggle to take in the air we need to live.  So how do we get it across to those very people we trust to help us to get a diagnosis and the medicines we desperately need quickly, before more damage is done and before more people die without even getting the diagnosis that could have extended their life.  I have often wondered just how many people were dismissed in this way and died and I wonder what the postmortem results showed. 

Like lots of you I have made friends with my ph family only to lose them to this illness.  The sense of pain seeing them suffer is overwhelming when now we KNOW that most of us could have better outcomes if the doctors that we saw at our GP surgeries had taken us seriously and asked for more testing than they themselves were not capable of carrying out.   

Our lovely media team have worked hard in respect of this, working with specialists and doctors they have made videos of patients  talking about their own personal journeys.  As a ph patient it was hard to watch, these are real people and I know personally the heartbreak of the journey to getting diagnosed.  These are the very people, myself included talking to doctors begging for help. In fact when we constantly get dismissed we end up almost screaming for help with none coming , making us feel we must be going mad if the very people we trust with our health just dismisses us like this. I have had the privilege of seeing these videos and I must confess both me and Colin cried.  It took us back to the horrors of the years before diagnosis, knowing something was happening yet being told it was asthma, 

My belief is that these videos of US ( meaning ALL my ph family worldwide as we speak for all  )  will be the voices that carries this message to doctors and specialists and is to be shown to physicians and researchers at a conference in London shortly and then at a round table event where it is to be shown to industry and healthcare professionals - being specifically held to show and discuss the issues we all have had and those still to be diagnosed by late diagnosis next month. Eventually it will be on YouTube and one can only hope the message spreads to all those in the medical world so more doctors can see we have real and very dangerous medical issues and move us along to professionals we need in order to get a better outcome,  

I myself was blessed to be diagnosed whilst abroad by a specialist in lung conditions who had never seen a patient with this very rare condition but had read about it. He quickly diagnosed me and before I knew it I was on a ward in my home town whilst they liaised with Sheffield who quickly admitted me and then I found my second home,  Hallamshire is where I am treated and where I KNOW I am listened to because this is their speciality.  I can only hope and pray others that were like me frustrated with how they felt but never being listened to find the answers and the treatment they so desperately need .  Let us spread the word far and wide  PULMONARY HYPERTENSION IS REAL AND LIFE SHORTENING SO PLEASE LISTEN. 

These videos will be shown on November 3rd where we all do our best to raise awareness about this rare disease,  When you watch them I hope you too see how hard our teams work to raise awareness and let’s hope that our voices are heard far and wide.

Research Video on the importance of trialling 

My health seems to be doing ok right regarding my ph now so I will take that.  I still put it down to the denervation I had as a trial and am so blessed to have been offered the chance to have it done. Research plays such a huge part in my life and I am always grateful to be given an opportunity to take part in any trial and study.  Even as I write this I am part of three studies which means that I have monitors working 24/7 and any issues can be dealt with quickly and efficiently.  

Each and every time I take any medication I give a silent thank you to the people that trialled the meds I am taking helping to extend my life and live to see family and friends that I love.  Some of the ones that trialled drugs for our condition are long gone from this earth but still I am getting the benefits of those agreeing to take part in the trials and studies,  My heart gets overwhelmed at the love I have for them and though I never met them they put themselves out for us all and trialled   I trial and whilst I know all trials do not come to fruition maybe in the  future others will be feeling exactly as I do whilst taking the meds that keep them alive - giving thanks to those that trialled their medicines,  

At our conference we had a talk about research from a lovely doctor from Cambridge and the importance of trialling and that we needed more patients willing to trial, Now it is not mandatory to trial but there are many benefits to yourself as well as to the future of people with ph.  To this end one of the videos made to be shown to the health professionals etc. is about trialling.  May I ask that when you see this video you take a moment or two to consider if you could trial or take part in studies,  I can promise you that first and foremost your health will always come first whilst doing research and who knows - you may become the first person to be cured of this disease by trialling the drug that not only extends our life but cures us - imagine that !!!   Somebody has to be the one, could it be you. 

If you feel you can trial then please do, all it takes is a word to your specialist doctor and he/she will see if there is one suitable for you.  Not everyone will be suitable to take part in trials but very very many of you will.  Please think about playing your part in research the next time you take your medication, think about what went into getting that one to you, the part you can play in research and hopefully getting more meds and yes THE CURE FOR PH,  It can’t be done without real people suffering from ph.  The circle needed to reach that stage would have a vital piece missing and these are the ones that trial meds for ph so the circle could not close and the cure or the meds needed to slow this down not be reached.  IT IS VITAL WE DO ALL WE CAN TO FIND A CURE OR SLOW DOWN THIS DISEASE.   Please please we need more people involved in these trials. Can you play a part in this,  I do hope so.  

Hamas and Israel  

I take sides with none of them as I do not take part in politics but I do see the tragedy of the innocents on both sides of every war.  Can you believe the ruthlessness of the fights taking place, the killing and now beheading of babies and children.  Our world is an absolute mess right now and it is heartbreaking,  We have war after war throughout the world.  What kind of a life are those still alive living in such a horror story.  Children with burns and bomb after bomb.  It makes my heart hurt for the innocent that suffer so much on both sides of each and every war.  For goodness sake, religion or nationality should not end in such things. Were  lessons not learnt during World War 11. I fear another war coming our way in the not too distant future which would mean our young men and women prepare to go to war.  When will the world learn that wars solve nothing long term.  I despair of the world we live in but truly cannot see an end to war after war.  I can’t even write more about this such is my hatred for it all and my heart hurts for a war where children and adults  are paying the price of a war that ends in heartbreak. 

Laughter after the tears. 

Our families know we are not having funerals ( preferring the ones where our bodies just get taken away and burnt without the cars and churches and the eulogies etc ) but whilst all sharing a meal on Saturday night all the daft things I have done throughout my life made for good joking and laughter around the table.  I said to my daughter “ see all these things you have thought I was mad to do or silly etc will be all the things you will remember me by at my Celebration of Life party. It was funny to remember where I was and what I was doing at the time to create such funny memories for my family.  Not for a while yet though hopefully.  

My daughter and her husband tried a drop of my home grown plum gin.  They declared it gorgeous but very strong.  I did warn them so I think they will be taking something with it rather than neat but nice to know our own plums created such a flavour.  

An accolade at last

Yes I have an accolade.  Whilst this won’t mean anything to you, for me it is the best as Izzy looking round the dinner table pointed out to each and everyone their place in cooking. I was declared the very best chef which made me smile and made my heart warm.  She isn’t too friendly with me right now, we have had a few weeks of tiffs.  I believe I am correct and she believes she is.  However she thawed just to say I was the best chef.  Tonight I cooked for her and her friend before they went to football practice.  Whilst she was happy to take the food and said thank you she thinks I am weird for wanting her home straight from school.  Sorry Izzy if I care too much but these days a young 13 year old is not safe to be trolling the streets.  Wait until you have children of your own.  Anyway your mom says it too so it’s not only me.  Colin of course is more laid back so he is good grandad and I am weird grandma. I will take that if it keeps you a bit safer for a while longer.  One of my friends granddaughters was trafficked at Izzy’s age and became part of the group of girls being used by those in Rotherham.  Thankfully she came through it but not every story has an happy ending.  Life was so much easier when she was younger.  She was so compliant but she has done what we all hope children get a chance to do, grow up.  We can’t keep them young more is the pity.  

So quite an emotional  ride for me these last few weeks,  Still I am here to tell the tale and so give thanks once more to my A Team at the Royal Hallamshire, Ward M2. You all know I love you.  I will end this now  and try to get it out today before November 3rd which is our PH Awareness Day. 

In the meantime I send warm love to each of you and thank you for reading this.  

Carole,xxxx

WHY I DECIDED I WONT BE HAVING A FUNERAL

WHY I DECIDED I WONT BE HAVING A FUNERAL.   ( Do not read this if you have a fear of dying - these are MY thoughts and everyone has their own ) 

In my life there have been many awful moments, some of these hurt so much even today over 50 years later.  On top of those there are also the deaths of loved ones.  We all lose someone  we love in our lives and as well as much loved grandparents, aunts and uncles I lost a brother when I was around 40.  It still hurts to this day.  As time moved on in time I lost my father who struggled illnesses for many years whilst my mom hurt her own health taking care of him.  Then came the time my mom felt she had done enough, she wanted to go.  Suffering from the beginning of a disease that would - had she lived long enough - have taken a lot of her memories she just gave up.  She said all the food tasted too sweet so refused to eat.  We promised her everything if she stayed with us but it was not to be, she slipped away when we had only been gone for a short time, just before we returned to sit with her again.  

On losing each and every special person in my life one thing I will never forget is following  the funeral car holding the coffin whilst I was in the car behind.  I struggled so much with this each and every time.  There was also the knowledge that one day I would be the one in the car in front, the one in the box.  It made me shudder to think of it as I hate being enclosed.  

On being diagnosed with pah and being very very poorly indeed it seemed my time was running out.  When we returned home from quite a long stay in hospital I researched giving my body to medical science as two people I knew had done so,  it’s not so easy.  Indeed I was informed that my body could not go to the facility I wanted it to go to which was research for ph.  Then came another other blow as I was informed that they had a surfeit of bodies so likely would not take mine.  This was something I never expected so I had to change direction.

I knew that I did not wish to go in a heavy wooden box so set out to deal with my own funeral.  Colin cried as I sat in the study researching what I wanted.  It had to be simple, it had to be quick and it had to be done the way I wanted it to be.  To this end I chose my coffin, one made of white wickerwork and I chose my own music.  All very simple.  No fuss which is the way I like to live.  Even today thirteen years later  I know that my wishes are still written down and in a file in the study waiting for the day they would be put into place, all was well.  I say WAS well because since then I have changed.  

I decided I do not want a funeral.  Why put my family through the pain I always hated when I attended them.  To that end I, along with my husband, decided we would get rid of my remains using one of the companies that does it all quickly and efficiently with no drama and nobody attending.    The company gets paid whilst we are alive and we know exactly what will happen.  So no coffin, likely a shroud and nobody waiting behind my coffin.  My body will be taken away and disposed of.  I have no issues with that, to me when I am dead I am dead.  Sorry if you disagree but as I said these are my thoughts and not written with intent to cause distress or argument.  

On discussing this with my daughter I was surprised that she seemed a little upset.  She asked if she would be able to just go to the crematorium, the answer was no as I could be taken to any crematorium, it would not be named.  She asked if she could have the ashes.  I told her yes if she wished but that I had no particular place where I wished to go.  She can keep them under the bed if she chooses.  I think she understood a little more when I explained that there would be a bit of a do at some stage as a celebration of my life, everyone can have their say about me for good or bad.  For my son I think it matters not what happens.  He will just go with the flow where my daughter is way more sentimental than he is.  So we have paid up.  We have the card that will be  used to inform the company on our deaths and then leave it to them.  We both feel relieved and it takes a burden from our families.  Not to everyone’s taste I agree but it is what we both want.  We both hope this will be a long time coming, we are not anticipating our demise and I hope to be talking to you all for a long time to come.  

HOLIDAY. 

We had never been to the Isle of Wight so decided to take a holiday and check it out.  Driving down taking our time our first stopover was at Bicester,  Of course we had to go to the Designer Village though quite why as I did not need or want anything and nor did Colin.  Hunger though needed to be satisfied so we managed to get a table in the Village at a neat looking restaurant.  Fortunately we ordered a starter to share,  I say fortunately as when it was time for the main course Colin’s salmon arrived but my chicken was nowhere to be seen,  I really prefer when we are eating to eat at the same time,  I hate that one eats whilst one waits,  Time moved on and I begged Colin to begin as his salmon was going cold.  When he finished the waitress came over and I asked about mine,  She had forgotten to order it.  Huge apologies followed with me saying it was fine but not to bother putting it on now as we were ready to leave,  We did not make a  fuss and demanded nothing but the manageress insisted on taking off the service charge and also our shared starter.  Out  we went with Colin feeling full but me not so much.  Fortunately there was Pret close by so I got a sandwich.  Onwards to our hotel for the night,  

The day after we headed down to Southampton so we could easily catch the ferry over to our hotel the following day,  I was looking forward to seeing our hotel which was called Luccombe Hall in Shanklin.  What a place and what a room.  We had a garden room which was very private with its own hot tub outside on the terrace.   I hate them but Colin made much use of ours after his morning exercises.  Our  hotel overlooked the sea and it was all very gorgeous.  Shanklin is a lovely place with lots going on but in an old fashioned laid back sort of way.  The houses looked lovely with the thatched roofs and we did so much with our time   

Just metres from our hotel was the Shanklin Chine.  How we loved it at night all lit up with the waterfall and amazing fauna.  Well worth a visit.  Each day we tried to do something new though a had a bad ph day one day and then another half a day.  It did not concern us too much as I went to bed with the sun ( yes it was t shirts all the way ) shining through our patio doors.  Colin enjoyed a small whisky and dry whilst in the hot tub and I rested ready to enable me strength to get ready to go out to eat.  Though the restaurant in our hotel was fabulous and we ate there the first night when we are away we like to try different places.  We were advised well and had some really super meals.  

Shanklin Chine

The miniature village was really good,  I have seen many but this one was exceptionally good.  See some of the pics Colin took.  You could believe they were of Shanklin itself but no - they were of the miniature village.  

Model Village

The Needles looked good but I was too poorly to go and have a proper look and I was disappointed to see some tacky amusement’s around.  I know people expect them but I felt they were rather old and not the best maintained but as I was not using them what the heck.    We both agreed we loved Cowes and wished we had had more time to spend there.  It was quite a novelty to go over on the Floating Bridge.  

Before too long it was time to head off back home.  We were sorry to leave such a lovely Island and my sister and my mom had been a couple of times so we hopefully followed in some of their steps. Both of us agreed we need to return, still a lot to see on this beautiful tiny island.  

Initially we had said we would stop overnight on our way home - this did not happen.  Once we started driving the roads were pretty clear and Colin just wanted to keep going so away we went.  We stopped once just before we reached home so we could eat.  It was silly to drive so far without getting out to stretch our legs but it just seemed so easy and we wanted to get back.  It had been Izzy’s birthday when we were away ( the big 13). so we wanted to see her at least before she went back to school as a teenager.  

Since arriving home I have had a couple of lousy days and all ph related.  You know how it goes.  Heart rate way too high, blood pressure way too low, headaches and dizziness and fatigue but today I seem to have come out of it,  I have an appointment coming up shortly at Sheffield so will see what they think of state of health.  I recently bought some barefoot shoes which I love so it will be interesting to see how my walk test goes wearing them.  

BAREFOOT SHOES

The reason I bought these is that I have a lot of trouble with my toes bleeding.  My systemic scleroderma specialist was concerned as she said it was a flag for sepsis.  As I was already immunosuppressed due to my meds for this condition my immune system dropped even lower to a dangerous level.  Anyway these shoes are great as my toes do not touch each other and they as soooooo comfy.  I love them and no more bleeding toes and no more spending lots of money on compseed plasters so a win win for me,  

GARDENING

On arriving home from holiday it was evident that there had been an awful lot of wind and our garden needed a thorough sorting out,  I was not good so it was all down to Colin. I decided I wanted him to take our strawberry bed out,  It produces loads of big juicy berries but I struggle to bend down to pick them and then standing up again and Colin seems always busy with the rest of the garden. So no more strawberry patch but I shall use it to grow other veg.  No idea what yet so will leave it lying fallow until spring.  In the meantime our turnips we planted are almost ready, the winter cabbage is growing well and the onions I planted around the sides are growing well. I have copious jars of plum jam made along with plum gin and plum brandy liqueur so that tree was a blessing.  

OUR ROAD STATUS

We live in a cul de sac and the road we have to enter to go anywhere has started to collapse and has been closed to traffic at the half way point - which is just below our cul de sac.  Well we could not believe our eyes when on Sunday despite this being very dangerous one idiot of a driver decided he could make it through using the pavement and the tiny space left open in the road for a water course.  How they made it I will never know. Just inches to spare and they were fortunate that our neighbours dry stone wall which is beginning to collapse due to the road collapse did not fall on them.  My friend lost a two year old son many years ago due to a wall such as this collapsing on him bless him,  She never got over it ( who would ) and forever would not allow the mirror on her wardrobe be cleaned as it had his hand prints on it.  So my anxiety to be fair was NOT for these idiots, were the wall to collapse on them then they were fair game BUT the path is used for prams and walkers and Izzy uses it daily.   Their stupid action could easily make the wall even less secure and lead to it falling on an innocent passer by. Colin took a very clear picture of the culprits and since then big stones that can still allow water to run clear have now been placed strategically to stop idiots such as these.  So back to normality with all that it entails. My appointment at M2 Sheffield is on October 4 so if anyone else has an appointment on that date please give me a heads up.  Colin has something to do here on the 4 th October so is unable to attend sadly. November  will mean another trip but this time to my systemic scleroderma clinic.  I always feel reassured after these visits and hope I do these times too.  

Just a quick heads up.  Lyz Clements who had a transplant has written a post about how at last her pressures etc are doing better. She puts this down to a particular diet she is doing and her specialist is happy with this.  It sounds interesting so maybe check it out.  It is always good to see reassuring posts such as this one.  .  

Well I feel I have just about caught up so I will leave you now and wish you all as good health as one can have.  I also send warm love to each and every one of you.  Take care.  

Carole xxxx

FILMING FOR PH

A few days ago we spent a delightful couple of hours with Mary and Jules from our PHA UK Association.  The object was to film seven people and their journey to get diagnosed.  When finished this will be used as a teaching tool and for many things ph related.  I believe many of us had a struggle living with this disease and not being listened to by our general practitioners.  I sincerely hope it helps in some way as I know for myself had I been diagnosed sooner my outcome would have been better.  I know I am fortunate that my A Team got on the ball and rescued me just in time but my concern is for those people still not being listened to.  I do wonder how many are suffering but not being diagnosed.

The filming went very well and though a little nervous at the beginning I quickly was put at ease and we had a super time.  I have been filmed for ph before so really I should not have had any concerns but there it is, I do occasionally get stressed about even small things,  Mary and Jules were kind enough to send us some photos that they took of us in our garden.  Sorry about the state of my hair but it does seem to have a mind of its own and it was a little windy in our garden.   

 Catch up with PH family

October 21st should be a fun time as our PH group at Sheffield is having a lunch for up to 100 ph patients and one carer each.  This is at no cost to us and I am so looking forward to this as we all miss our conferences we used to have before the dreaded covid.  I don’t believe all the tickets have been taken yet so should any ph patient that attend Hallamshire wish to attend please get in touch with Shaun at the PHUK organisation who will be able to issue tickets.  Having been a patient there for many years I do know there are plenty of hotels around and about should anyone wish to attend the lunch and  wish to stay overnight.  Not sure of the range of prices but well worth a look to extend your time in Sheffield.  This gathering and lunch will be a super way to reconnect with patients or make new acquaintances.  I believe each specialist hospital will be having their own this year so keep a look out for any info that comes your way.  

                                                                                       Gardening. 

We are at the stage of harvesting our crops.  Small though they are it is very  rewarding picking our own things.  Haul yesterday was another pile of onions, strawberries for breakfast, potatoes, some for the next two meals but some already in potato sack whilst still loads to be harvested.  Tomatoes are ready for picking now.  Yesterday we picked a pile of plums from our tree and I made plum jam.  This was very satisfying indeed.  In the morning we had collected blackberries and though we had already picked 2 1/2 pounds from the hedge opposite us we decided to go to our special blackberry picking spot in Copley in our way home from shopping,  In 15 minutes we had picked 3 1/2 pounds easily between us,  we had enough for our needs so left for others to collect.  Once home and plums jam made I then moved on to make Colin his favourite topping for his yogurt.  This is a very easy blackberry syrup.   Way too sweet for me but I was happy with the result.  A beautifully clear syrup.  So easy to do and now in four jars ready to see him through most of the year.  He only has a little at a time.  The spare blackberries will do well in the freezer and are going to be used as a blackberry  and apple sponge to have with custard over the Christmas period when we have family over.  That is the end of my black picking for this year.   Now I just need cooking apples to pick and stew to freeze .  I don’t grow these just eating apples and this year they have not done well at all with most of them dropping off the tree whilst still small.  I think it is the weather but who knows,  our blueberries were poor this year too.  Our herbs have done well and the rabbit next door benefits twice a week by eating a little of these.  She squeals with pleasure when she smells them. 

 General News

My ph still appears to be stable though my breathing is not the best.  We are trying to get to the bottom of this and many tests are being done or have been done so hoping for news soon.  I do have a tilt test and barium meal thingy coming up which is sadly on the day of a dear friends funeral,  Richard was a great boon when I began at my local Thespian  group and taught me so very much and we had such a laugh too.  We are hoping I can get my testing done asap and get to the wake in time to see his partner and lots of other good friends too,  I am hoping it goes well at my appointment with no hitches.  I don’t want to postpone it as we need to get to the bottom of my issues so we will try to do both.  

I am waiting for the full breathing test appointment which again will be at Sheffield and also  to be seen about a silly thing on my face.  It is just to rule out cancer which I don’t believe it is but my doctor wants to have me seen quickly so Tuesday it is for this one,  On the same day I also  have an appointment to check my white cell count which is extraordinary low.  I do take immunosuppressants which do lower them a great deal but mine is way too low so they test us for all kinds of things, leukaemia being one but again I am confident I don’t have this.  Anyway tests being done on Tuesday and then another two weeks later so should be closer to finding out what is  going on.  My specialist is being very thorough and I am also being checked out for diabetes and my thyroid.  I am waiting for an appointment to see a chiropodist due to getting way too many blisters on my feet despite my walking boots being made specifically for me, my specialist is concerned the blisters may lead to sepsis.  What a struggle as I try to keep fit by walking yet this may lead to serious consequences to my health,  It never ends but I am blessed with the care I receive and leave any worries on their shoulders. 

Football

I have been loving watching the Lionesses playing football this year.  Today they play Spain in the final so the result will be over by the time you read this but it will be a great March to watch.  Colin is out on his bike this morning as I write this but will be back to watch with me as he too has been very interested.  One thing that does disappoint me though is to see once again fouls being carried out.  I was hoping that as it was women playing they would be more bothered about the game than fouling to try to win but there it is.  Let’s hope it does not go the way of the men’s football that to me got too physical it put me off watching,  OK I suppose I should accept it is the way it goes but for me I would prefer not to see people being deliberately stood on, pushed or hurt in any way.    

Add on.  Awwww we lost.  Gutted but must admit Spain played a great game though still too many fouls,  Well done Spain. 

My daughter and husband and two grandchildren are still away on their holiday in Spain.  We have missed having them next door but the holiday appears to be going well.  Colin has enjoyed looking after the cats as he gets lots of cuddles in.  As it is next door it is doable.   Nice and easy, just a quick walk through the gardens and into the house.  It works.  We wouldn’t be doing it if we still lived where we lived before we built next door to them so another plus on our move.  

Another add on. As we were watching football we looked up to see a smiling Izzy.  She had just arrived home from holiday a day earlier than I had thought but at their scheduled time.  We said she had not been home, just came straight round which was nice.  I did. not get to see our Harry who was dropped off at his moms house on the way home.  Hopefully I shall see him soon. 

It is almost time for the children to begin another year at school. We can’t believe Izzy will be starting year 2.  From the shy scared little girl she is now confident.  She catches busses too and from school and catches busses to meet her friends in town for lunch etc at weekends,  Scary to see how quickly she has grown but very necessary for her to be independent as she grows and develops.  We have an app  on our phones so we can see where she is when we need to.  

Right now she is very much into history and requested for her birthday pictures of all Henry V111 wives and also Queen Elizabeth as she was his daughter.  Not sure why she has not requested one of Mary his eldest child who though declared illegitimate as a way for him to divorce Catherine of Aragon went on to become Queen Regent.  I must ask her on her return.  Anyway all pics are now delivered and just been returned from the framers ready for her turning 13 in September, yes a teenager, now the fun begins…………..

Well I must now get on and maybe prep our evening meal, sea bass, our own potatoes, lots of veggies etc.  nice and simple.  Colin cooks the sea bass and honestly he does such a great job they would approve on master chef.  Beautiful crisp skin and lovely and flaky flesh, not dry not raw, but perfect, with brown butter and capers drizzled over it is a delight.  He will finish with yogurt and his gorgeous blackberry sauce I made him yesterday,  I may make a jelly for me.  Sort of gone off sweet things.  

I hope you all go well with whatever you are up to right now.  Thank you for taking time out to read this.  

I send warm love to each and every one of you.  

Carole xxx 

PROMISED FOLLOW UP - AND A LINK TO MY TRIAL:

I posted yesterday about my pressures when I returned home from my penultimate trial date.

Of course it raised interest as I expected it to do that.  At that time I could not share any more details of the trial drug with you for reasons I will give below.  I do hope that it will explain  little more and to stop a particular person from believing that those that trial and do not share too much are not very nice .  There are valid reasons behind why they do not share.

I have trialled many many times, sometimes being on two at one time and on each and every paper I sign the forms that say these trials come with risks, side effects and even death.  Yet these people continue to trial for the same reason I do, we know too well the devastation of ph, this unseen disease, we need a cure not only for ourselves and our fellow ph brothers and sisters but for the ones that come afterwards.  We long for the day a person suffering with this is told that there is a drug that will CURE them.  This is why we trial.  I do wonder if the person knocking the ones that do not share has actually trialled.  I ask because if she has done she should know there are strict rules put in place by the Pharmaceutical companies about sharing information until we are told.  If we do so we risk not being allowed to trial again.  Lots of money is invested in each trial, how would it be if a rival company took hold of the trial and made their own drug, remember it takes years for each trial to come to fruition.  There are loads of reasons why we are not allowed to say too much which is why I only said how my pressures had dropped.  Now however I have permission to share as I have spoken to the main man concerning this drug, a guy I have huge respect for and would not  wish to go against him in this.  You would have seen me write about him before and our regard for him, his name is Alex Rothman.  Yes this is a Sheffield Doctor of cardio thoracic and this isis own baby.  .

What we all need to remember is that 

a}  I do not know which dose I was on or even if I was on the placebo, though both myself and my doctor believe it is too much to expect my pressures to have dropped like that, after all I have been on the same meds for 12 years so why suddenly drop in the last eight months since taking the drug if not the drug responsible..

b} We need to remember that  I am the first person on this drug to have come so far.  There are only another two on the drug and they are not as far on in the trial as I am so they may well not have the same result as I do, who knows in this trial -way too early to tell. 

c}  If I wish to continue to trial and I certainly do then  it is up to me to share only that which I am allowed to, nothing else.  I never wish to be taken off a trial or be told I am not responsible enough to take part.   This goes for anyone trialling so please respect them, do not knock them for not telling you the ins an outs. Remember they are doing this to benefit us all.  

d} Trials are NOT easy.  Much time is taken up with hospital visits, numerous tests which lots of people find scary and invasive, right heart caths for instance have seemed to me to be a constant though I know not all trials require these so check them out first.  The side effects may sometimes be bad but always discuss again with doctors if this is the case.  They do not wish us to suffer from doing these trials, our health and well-being is always at the forefront of their minds when working with us.   Remember it is a team effort.  There are generally studies around if you wish to take part in one of those.  I have been on two for many years.  

Who knows if this drug is the game changer we have been waiting for, all we can do is hope, pray and wait.  I still expect many ups and downs, life is a roller coaster with ph and for no reason we can suddenly change for the better or the worse.   This along with my systemic scleroderma makes life a balancing act of making the  most of the ups and just getting on with the downs as best we can.  

This trial for me has been very interesting as through it all I battled covid where I tested positive for 20 days, no fun when you are immunosuppressed , and then RSV which after a three week hospital stay I was still recovering from up to two months later,  one would have thought my lungs would have called it a day and worsened so I believe as does my doctor that this drug is responsible.  

Now I can tell you that the link to the drug is:-

LTP001 

https://clinicaltrials.gov/ct2/show/NCT05135000

I do hope you find this of interest.  Now for the money shot.  Whilst we KNOW pharmaceutical companies make a lot of money out of drugs we all know that before they reach them the work needs to be done to get it to that stage.  This is where our specialists teams, our researchers etc come in and actually work to get a drug they believe works for us.  Remember this work is not funded at this stage which is why we need money.  The following paragraph relates to Colin and it will be the end of the link to Just Giving.  We shall then close it down.

Must share with you all, though i suspect a few of you have seen this amazing poem received today from our own Tess Jewson.  Colin was washing the motor home when I read it to him and tried to hide his tears cos of the water but the truth was he did shed a tear or two.  We were overwhelmed.  This lady has quite a talent methinks.  

Colin is happily back at home and is getting on with all outside jobs such as edging, not for me to wield those huge electric shears and washing the motor home, blowing all the paths and garden etc.  So far he has not gone into any detail of his next adventure though I did overhear him telling Alex my doctor who led my trial he is considering Ireland.  Watch this space.

Below is a video -  very short - of him coming through the gates at Leeds station where I collected him from after his epic fundraising ride.    He tells you all thank you for donations etc.  

Link to `Colin's Just Giving Page: -

bit.ly/LeJogForPHAUK

At the hospital yesterday he said he felt like a media star as it was already known he had completed the challenge and they were so impressed with him - I was too. 

So after reading about trials which are so important to us if you wish to donate ( I know many of you have for which a huge thank you ) please feel free to do so.

If you are interested in trialling drugs for ph then ask your specialist who may well be able to put you on one he deems suitable.  Remember not everyone can trial, there are some trials which your specialist would deem you unfit for so do not be disheartened but just remember we are grateful to all who at least try and in he meantime there are those who do, all we ask is you not to disrespect us for not telling all you feel we can.   

Now I must walk and then return home to clean out a couple of cupboards as I have bought new glass double walled mugs but need to make way for them!   It will be odd walking without the watch and phone that I had to keep with me 24/7.  

Wishing you all the best day and sending big hugs.

Warm love

Carole xxx