Thursday, 15 March 2018


Rebecca said it straight!

When Others Don’t Understand How PH Impacts Our Lives

Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly don’t understand that some days are okay and you’re actually able to do things.
They may claim you’re a liar. An exaggerator. A hypochondriac.
In times like this, it’s important not to doubt yourself. Do not bend to fit their wishes, or their limited understanding of pulmonary hypertension. Instead, use it as fuel. Educate them. Talk to them. Tell them how some days are worse than others, just like for them. Doesn’t everybody have bad days?! Perhaps ours are just a little more severe sometimes. Explain to them that our lungs will be different on days when we eat too much salt, when the weather is too hot or cold, or if we are adjusting our medications.
Pulmonary hypertension is not a “one-size-fits-all” illness. Everyone is different. Sometimes that is frustrating. When you’re desperate to meet someone who is exactly like you — suffering like you, feeling the same — you won’t find that person because no one is the same. And I think a lot of times, when people hear an illness term being used, they expect it to be the same for everyone.
You’ll never be 100% understood, and it’s easy to be upset by that or become angry when people don’t get what you go through. But being weighed down by anger and frustration won’t do you any good. It won’t make them understand better, or apologize for their flip remarks.
Remember that you have control over only you. How you react. What you say. How you teach them. How you love them, even when you’re furious that they don’t get it.
They may question it, but we’re living it. So, let’s make it a life worth living.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

All of us struggle trying to get our family and friends to understand our ph.  How it affects us, why we can do something one day, hour, minute and the next it is an impossible task for us to do.  If you struggle to find the words to explain it, bang your head in frustration at them not really having an understanding then you could show them these words written by a ph sister who sadly just lost her life to ph.  Looking good, fit and well on this picture nobody outside could see what lurked beneath and sadly she has died. She was hiding a disease inside her body that most will never have to deal with, never have a true understanding of it.  The words she wrote are so profound, so very very true.   

So Rebecca has died, so suddenly another young beautiful girl taken from her loving husband, family and friends, taken from the ph community of brothers and sisters worldwide.  How my heart hurts for the pain and suffering others now will be going through with the loss of her.

For us as a community Rebecca left us this amazing piece of advice.  Please read it, take it to heart, copy it, do whatever you like but do not be afraid to thrust it into the faces of the unbelievers, the ones who say “ it can’t be that bad” or “she is making it up” etc.  “She/he just wants sympathy” is another  one thrown at us sometimes.  No we don’t, we want a life, a life where we can breath, where every day is not measured in “spoons”.  (read the spoon theory) or biscuits, my blog That’s the way the cookie crumbles.

So I say thank you to Rebecca who left us with this wonderful article about living with ph.  You inspired many on their ph journey and you leave behind many who are shocked and saddened at a life lost too soon.  Breath easy now Rebecca. xxx

Wake up, it’s a beautiful morning.

I woke early today and the air felt crisp and clean. I could have stayed in bed for a while, after all it was only 6. 15 a.m. but why waste the day.  I am always well aware that our days change in the blink of an eye so I decided to “go for it” .  Donning my outerwear to keep me warm and my trusty buff, a very necessary part of my outdoor clothing when the air is cool ( I use it as a balaclava to cover my mouth from the cold air) slipping on my light weight but warm RAB  jacket to protect me from weather in case it turned colder and my trusty boots I was away.  

It was 6.45 by the time I left our apartment.  The world was just awakening and sleepy dog walkers passed me by with a weary “hello” , commuters that began work early were on their merry way in the few cars that whizzed by  me.  An ambulance screamed past with its lights flashing but no siren was necessary as the roads were pretty clear.  As I passed the post office in the village I could smell the fresh bread just out of the ovens as this post office is a bakery too.  I almost went in thinking a nice hot t cake straight from the warmth of the oven would be a lovely start to the  day but I restrained myself and continued  on my way. Down the hill I wove my way, how lovely that lungs that cannot cope with the slightest incline can actually embrace the downward sweep of a hill.  Past the village school, empty now as it was too early for the children but I knew in another two hours  it would be different again, bursting with children, running, shouting and screaming with joy as they played their merry games before the  school day  began and onto the path I travel many times between the river and the canal.  Sometimes this is on my scooter but today I knew it would  be a day I could do it on foot.  Oh happy days. 

The rain that had poured in the night had left many big deep puddles.  I had no choice but to splodge through many of them but my trusty boots could take the pace.  From time to time I walked around them onto the grass that was still white with an early morning frost, the crisp sound of my footsteps splintering the ice was lovely.   The river flowed and splashed merrily against rocks and the sound was very soothing.  Onwards through a thick blanket of crunchy fallen leaves, beginning their journey back to the earth, turning to mulch to help sustain new growth and on I went  until I reached the canal.  Oh my life felt good this morning,  

The world was  coming alive the more I walked,  I saw the builders in their high vis jackets beginning work on the mews houses being built overlooking the canal. Runners were passing me by at a fast pace, one that even were I well I could never have dealt with.  The ducks and mallards were embracing the day, preening their feathers.  I saw a pile of feathers at the side of the tow path that could only mean one thing, one bird had been taken for a meal.  Was it a fox or a mink, I will never know but life goes on.

As ever I gave thanks I am still alive to see these things, to smell the  fresh morning air to all my ph team.  I know without them I would long ago have been dust, gone, taken with ph. Also I am always thankful for my husband, who, when I wanted to give  in, when the pain became too much would make me pull my socks up,  always with the hope of a new day.  That was at the beginning of my journey, before I learnt just how much strength and stamina I had, before I decided to fight this ph.  

It took time, I won’t deny to get to  this stage.  After a year of doing nothing to begin to get back into the world and try to become a person again, not the blob in the chair.  It would have been so easy to just sit, let the people around me take care of me but I couldn’t do it.  I began slowly to build up stamina, you cannot do it in a day, you need patience.  Excercise CAN be done in a chair I learnt.  So over time my life has changed.  Like everyone I go through  periods where I can do very little, my husband takes over without asking, he knows I need help.  Then when I can do I DO!  Like today, I knew I could so I did it.  Tomorrow may be a different day, our future is not guaranteed.  

It did remind me of the day I went for lots of tests  when I was first diagnosed.  They did not make me do the walk test as I was bed bound but they did put me on the machine that tests how much air we can breath out.  I thought I did well and it was years later when reading something in my notes that I saw that they counted the test invalid  as I could not even blow enough to register, on the machine.   My stubborn streak helps.  I try not to give  in, to strive  to push myself.  If I leave this world tomorrow I know nobody can say I did not do my best, that is all anyone can ask of  their bodies, do your best for yourself and the people around you. We are all different with ph and I am aware some can do and some can’t do things, all anyone asks is that we try.  Tomorrow may well be a duvet day, how well we know we push ourselves one day and pay the price the next but it was so worth it.   My day was a true ginger biscuit day and I thoroughly enjoyed every minute of it.

PH and Pregnancy

I have just received my magazine from Sheffield, my pulmonary specialist unit.  One paragraph was so lovely to see for those with ph who are  wishing to have babies.  It states, and I quote - 
Staff at Sheffield have reduced the risk of pregnancy related deaths from 30 -50 per cent to about 10-20 percent,  Members of the team have been involved in developing international guidelines for managing PH in pregnancy.  

Just one more reason to be proud of my A Team at Sheffield, they break boundaries. 

Lyz Clements
Lyz returned from her visit to her transplant clinic and all is good.  Her lungs look great.  Her feet still are painful and she still has six weeks to go before she can drive so she is now  accepting visitors as she cannot go to them.  For obvious reasons your health needs to be good if you are considering visiting, colds and coughs are a no go zone for Lyz so take care.  I am hoping to go and  visit myself in the next few weeks, I can’t wait to see her, and this because a donor was thoughtful enough to put their name on the register.  Becoming a donor can  transform many lives. 

Keith Andacky - Denervation 

All went well with his denervation.  He has been told it may take months to notice any improvement and I second that but I know he is pleased to have had this done and now looks forward to a better life,  His lovely wife said  she has lots of jobs lined up for him when he does feel better LoL,  Hopefully easier walking when his pressures  drop. Go well Keith, onwards and upwards now. 

Waiting for it’s hat!

Our house is really coming along but we have  now come to a standstill as we await the steel that is needed for part of the roof that will form our covered terrace,  So most of the tiling us done but that part will be the brim of the hat, it will keep out the worst of the wind and rain over the terrace.  The waiting game begins again but hopefully not for too long. I know the windows are going in shortly and then the joiners can begin. 

We were invited out for a meal with our family for Mother’s Day and it was the first time I had seen the new house in a while.  Colin decided the site needed a tidy up and the contractor agreed so hopefully that job can be done whilst they await this final piece of the roof.  It has been difficult for the  builders as our plot is not  the biggest and what with their comfort cabins, scaffolding etc there has not been much room to store things enabling the site to stay tidier.  Also a lot of railings are up to keep the site safe taking up even more space on an already restricted  site. We are aware that this is a small cul de sac and we need to make sure we keep the place neat for the ones that live on it.  


I am so cross that I never thought to take pictures of Izzy when we went out for Mother’s Day.  She looked a picture in a fabulous skirt and top, very pretty,  All three moms were given a drink of prosecco when we went to the restaurant but of course not Izzy.  She did leave with two bunches of daffodils tied with a silver bow from them restaurant so they will now be in her bedroom. Izzy is sleeping here this weekend and I am not sure how she is going to feel when one of her tasks is to pull apart all her Lego structures and re box them.  Very necessary as the whole apartment is being decorated ready for when we leave,  All pictures, memory box, ornaments are coming down ready for painting.  I see no point in rehanging them so they will be boxed up ready for our move.  

Thank goodness for all the masks I bought when the flue season was here.  When the paintwork is being sanded down it really gets to my lungs. It was driving me mad coughing until I remembered them and I am wearing one now as I type this,  Yes I may well resemble a rooster with its red valve and red straps but if it saves my lungs from being filled with the detritus of old paint I do not care.  

It is beginning to seem real at last, our  moving.  We have been and still are happy here but my dream to live next door to Izzy and to have my own  terrace is beginning to get more real with each passing  day.

Spring is in the air yet we are told to expect snow again this weekend.  We are surrounded here with crocuses covering en masse all the verges and parkland, how beautiful it all is,  Right now life is good, I intend to cherish every minute,  As you can see by my opening paragraph it can so easily be gone,  Make the most of your time, as the saying goes.......wake up and smell the roses.

Once again such a sad way to start my blog with but necessary I think to show how this young girls writing relates to us all.  

Take care and warm love to you all.  Please remember a comment, no matter how small means so much to me and,  I love them  all.

Love Carole xxxx

P.s.  as suspected today an almost duvet day but well worth it for my beautiful morning.  

Wednesday, 28 February 2018


This  blog will not be of much interest to many of you as I have been on holiday so not really much PH related news to report except for news of Lyz Clements and sadly the death of yet another ph sister.    I made a conscious decision to not be on Facebook too much as my time with friends in Spain was so important to me. 
I do know that the denervation for Keith, our ph brother in America has had to be postponed as he had the flu.  Obviously they need you to be as healthy as possible to get all the correct readings.  He is now scheduled for the 15th March so he is eagerly awaiting that in the hope of lowering his levels in his lungs.  I certainly wish him all the best but know he will be in good hands.


Lyz Clements had a nasty shock when a bronch test showed there was an issue with the top of her lung  after transplant.  They are hoping that strong iv antibiotics can help this but to be fair it is now just a waiting game.   I have messaged Lyz today and she tells me that it is a small hole at the top of her right airway to the  joining of her lung. Latest scans show some sign of healing but they are pleased they saw it when they did and a careful eye needs to be kept on this.  It is causing air to leak at the bottom of the lung and this in turn can lead to an infection.  Despite this there is a plan in place for her to go home next week but to return every coupe of days or so to have the progress of this checked out.  A scan of the lung will be done in two weeks in the hope that it is much improved.  Though there is still a way to go for Lyz she is still staying very positive.  She also sends you all her love and said the messages she receives from you have been so lovely and so welcome .  She is a trooper is Lyz and I do hope this setback resolves shortly.  

Sadly another loss

I was so gutted to see when I was on holiday that we lost another ph sister.  This was Janet Ayton who lived in Leeds, West Yorkshire.  I believe she had been quite poorly before her death but this would still have been a shock for her family and friends.  It is desperately sad that we continue to lose our ph brothers and sisters to ph, a very cruel disease.


Well how this has moved on.  We now have the roof felted so this hopefully means that we can shortly be in a position to get the contractors in to get the walls done with plaster board , underfloor heating etc.  I do look forward to the day we can actually move in.    

We kept changing our minds about our kitchen and we believed just before we went on holiday that we had got it nailed.  That was not the case as when I was in Spain I decided I wanted to go back to the drawing board yet again!  The problem is, as I have said previously is that it is rather a large kitchen but it has three doors leading of it so getting proper runs is impossible.  We also have a huge corner window to take in the views of the hills so did not want to encroach on this with kitchen cabinets.    However I think I had a light bulb moment (though Colin says it was his! !)  So away he went to his drawing board and came back with a drawing I actually I really  love instead of thinking it would do.  A quick email to my daughter to get her thoughts and she too really likes it so hopefully we have at last got it cracked.  Yes I know I have said it before but this time I have no reservations.  We need to make sure we get the correct granite now and I think we will have a gorgeous kitchen. 

Izzy went into the house just before we went away and climbed the ladder to upstairs.  She was very impressed and we got the seal of approval from her about her bedroom so we are well pleased. Of course the house is still very raw, no plaster board in the rooms, no joinery, no electrics or plumbing but the outline is all there.  Now my task is to find the best lighting for rooms that are not conventional as the roofs have different slopes to them, some are open up to the eaves and some slanted.  It all goes to make for a house design that is different which is what I asked for.  Will have some fun with this. 


We are so proud of her as she has again skipped a level in her piano lessons as she is doing remarkably well.  She enjoys her time playing it and even recorded a video playing happy birthday to one of her friends!  She coordinates two hands beautifully and appears to be quite assured when sitting playing. I hope this enthusiasm continues as we may buy one when we move so that grandad and grandaughter  can both play together.  

She did so well skiing this year, such a shock as she really was not on keen to go.  What a difference a year makes and it has shown just how confident she now is.  She did not want to come home as she was loving the slopes and at the end of her holiday was confidently going up the ski lifts  and down the nursery slopes. She was following her mommy like a duckling and we were sent  videos of her and we were so impressed.  

When she arrived home she cried and said she missed her grandma and grandad!  Danielle rang us and we spoke to her and said she could stay the night here on Tuesday  if she wished after swimming lessons.  She was then happy to go to sleep.  We enjoyed a lovely evening with her and she happily went off to school today through the snow after a good nights sleep.  I am so pleased she still wants to spend time with us as I am aware that the passing of time will make a good deal of difference and other things will be  more important in her life so we make the most of what we have.  Though of course she will never stop loving us of that I am sure. 

Enjoying her half day off school due to the bad weather. 

Our holiday

What a joy this was.  It’s was so unexpected too.  I woke in the night a week before we went with the idea I wanted to see our friends  in Javea, Spain where we used to live.  A nudge to my sleepy hubby at 6 in the morning to get his ideas on this.  He was not so keen as he was heavily involved with the house build and felt he had too much to do.    I left it that day but did set about finding us somewhere to stay,  just in case. There were quite a few places where we could use our friends  villas but in the end we opted for a two bed apartment right in the heart of Javea.  It meant that it was all flat and we could move from the Port of Javea, a beautiful place, to the Arenal where there was much to see as the surfers were out in full force or sit and take a coffee looking out to sea and  watching the people walk by.  

We were so blessed with how many friends we managed to get to see.  In total it was 15 as some were away on holiday or about to go on holiday.  We spent leisurely days talking over coffees or having late afternoon meals with our very precious friends.  We are so pleased that the friends we made whilst living in Spain are still in touch with us and  so it was as if it was only yesterday when we had last met and enjoyed each other’s company.  We still miss Javea and said we could not have picked a better place to build our villa.  

We went up to where we used to live and we were fortunate that the gardener was working there that day.  We told him we were the ones that had the villa built and always went to see it when  we were back.  He was lovely and let us in to see the gardens.  Both of us were delighted to see that both the house and gardens had been kept to the high standard it was  when we left it.  The only small difference in the garden was that they had removed some of the fruit trees, the  fig tree, persimmon, nectarine  and pear trees had gone.  It did make sense as they were not there long enough to use the fruit.  They will retire to it in due course.  Our grape  vines, both black and white  so lovingly planted were still there as were the passion fruit, pomegranate  and the oranges and lemons.  They had put a cover over the pool.  We never needed one as the pool was used so often but I get that it was a great option for them.

I did get a pang when we left but life moves on and we cannot hold back time.  Had we continued to live there we would not have seen much of Izzy, the house being built next door to her  would not exist and getting appointments for my ph would have been incredibly hard so the decision to sell was the correct one.  

Sadly all good things have to end.  We needed to return from our holiday as we had appointments to attend and house build to see to.  I did ask Colin if he was happy he had gone and the reply was a resounding yes.  Our home here was lovely and warm and tidy, Lucy had done a great job so we were swiftly landed right back into our busy life here.

I did need two days in bed to recover from our holiday but to me it was very well worth it for all the memories that were made.


Just got a phone call from a friend so say she was so concerned about me as I had said I was driving into town today to collect my medicines.  She was worried as the snow is really thick today.  I reassured her that all would be well but I am so touched by her concern.  Good friends  are worth their weight in gold 

So there you have it.  Certainly not the most interesting blog for you but I needed to get one out so you did not think I had fallen off the face of the earth.  At least you are up to date with where we are going  with the house over here.  Of course now the snow has arrived so no quite sure if they are in any position to wok inside right now, we shall see.  

Keep warm and keep safe those of you in the UK being hit with the snow.  If you live abroad and are enjoying lovely weather think of us here freezing cold!  Definitely ham shank and pea weather here so i will go out today to buy ingredients.  

Warm love to all and I promise I will try to have more things of interest to tell you in my next blog!!!

Carole xxx

Tuesday, 6 February 2018


R.I.P. WILL ACRES - The cruelty of PH

With a heavy heart I need inform  you that we lost Will Acres aged 22.  He sadly lost his battle to this awful pulmonary arterial hypertension on the 1st of this month.

Will was only diagnosed in 2016  at Brompton with severe pulmonary arterial hypertension and received amazing care. In the beginning he did really well with the meds and went on to graduate.

He was a D.J. and his earlier story can be found in the Spring Magazine Emphasis, a well loved  young man who enjoyed life to the full.

Sadly  his condition  deteriorated and Will desperately needed a heart and lung transplant.  He was blue lighted to Harefield where he received his  donated heart and lungs, there were many complications for Will and he went on and off the ECMO machine to try to keep him alive.  He had to lose a leg above his knee in an effort to keep him with us.   As his body fought all of this he endured so very much.  Sadly he developed a reaction to the Heparin and had an infection they could not locate.  He endured surgery to remove blood clots and two cardiac arrests.  At one time is seemed he was winning the battle.  He could react to his parents , squeezing hands and blowing kisses through his mask.  Staff did all in their power to help  but it was not to be.  I could tell you much more but to be honest my heart is breaking.  

I have spoken to his mom Lea, who is willing to share this story so we can raise awareness and support for all with this terrible condition.  So we lost a lovely young man, his parents and sister lost their beloved son and brother.  His girlfriend, who was very supportive lost her guy too.  How awful the we still need to endure losses like this.

So with a heavy heart I will put this post to the top of the blog and then share it.  I long for the day  there is no PH.  This post is just so bad and life can be so cruel.

Lyz Clements

Our latest lung transplant patient continues to do well.  This morning she was even doing some admin for the group!  I have to take my hat off to her.  She is on dialysis but that can be normal after transplant so all is great with her recovery and the doctors are very pleased.  It is such a huge thing to undertake, to accept anther persons lungs in the hope it gives a few more years of life.  Sadly with ph that is often the only option available for some.  My hope is that there will become drugs available that will stop total rejection of new lungs forever.  Lungs are the worst organ to transplant successfully as they are open to infections so the person receiving the new lungs has to take a great deal of care to protect their precious gift. Fortunately we have a few n our site that have had successful transplants and are leading wonderful lives.  I feel sure Lyz will have a very successful time pre op and go on to enjoy life to the fullest.   

Medtronic's Synchromed 11 Approved to Pump Remodulin into Veins to Treat PH

I am not sure how long this will be before being used at last for those on the pump.  Once it has FDA approval as this has, I pray the powers that be get on with putting it out there to be available to the patients.  Too often we read horror stories of how  the pump has had to be moved and the pain the comes for days with a new site.  I fortunately never had this, I had the IV meds but that itself could lead to many complications due to infections.  In the world of ph please spare a thought for those that have to be on either  or these pumps and pray that this new way to deliver meds can be offered to our ph brothers and sisters sooner rather than later.  

A skeleton arises

This skeleton is our new house.  At last rising like a skeleton from the bowels of the earth it is reaching its arms to the sky to embrace the world.  It has taken its time but we see so much progress now.  Alas though just as we thought we were close to the roof being fitted of course the snow is predicted to come down!  Though in fairness the lads work through the most horrendous weather if the temperature drops too low they cannot, the cement would not set.  Our weather men are saying this month is going to be really bad, really cold.  I am hoping that as so often it happens here that it passes over us.  Being in the valley as we are it often does.  Once again we play the waiting game.

Kitchen is sorted at last, fire sorted and the heat exchange system we need to keep the house fresh all the time is well on the way to being understood too so the fitting should not be too onerous.  It is beginning to get exciting now as we can se the rooms and actually walk on the upper floor, if wearing a hard hat and a viz jacket, I have not done so as it means i would have to climb a ladder.  Hoping to see great progress when we return from our  holiday.


Yes we did it.  We have booked a flight for Friday and we will return to our beloved Javea in Spain to meet up with our friends and some family.  Colin will get a few walks in.  Sadly we will have missed by two days the lovely walk called appropriately The Almond Walk. I know I have posted here before about this walk.  This was the last walk I ever attempted before diagnosis.  I love this walk and I tried, I really did to keep up.  It became apparent even before we walked up a slope that it was not to be as blood came into my mouth and each steep was so very difficult.  I was sick in the hedge, a bloody foamy mess and I knew that we needed to look further to a diagnosis of my problem.  We aborted the walk. 

Sadly it was to take still another five months and a lot of heartache and wondering before I saw the doctor that diagnosed me.  We still keep in touch now as I owe him so much. Today I am going to buy him a really nice tie and take it to him when I return to Spain.  Last time I saw him we took him a really good bottle of whiskey but it turns out he does not drink.  As a doctor he will have many occasions when he will need to wear ties so it seems a good option.  So that will be my "to do thing" today.  

We are having 15 nights so no excuses to not see as many people as we know.  I am so excited but of course first comes he worst part of travelling, the dreaded packing.   I am tired just thinking about it.  We do not take much as we always go where there is a washer.  Easier than carrying loads of suff to see us through our 15 night holiday.  Always there is the thought in the back of our minds of how I will be, how will the plane journey go, the transfer through the airport.  To be honest we hate it, we hate all about travel but we do know the end result will be worth it.  

The big plus in this is that our cleaner, Lucy is more than happy to move into our place for the length of time we are away.  I know we will return to a house bottomed ready for the spring.  She has told  me  that she will go through all cupboards etc with a fine tooth comb.  We are truly blessed! 

So blessed

Izzy and I were dropped off at the door yesterday as Colin had a job to do.  No problem except we saw our Helle Fresh box waiting for us.  This box only contained three meals but they are heavy.  I was not sure how I  would get it into the kitchen but I need not have worried.  As I was picking up Izzy's coat, flung with wild abandon onto the hall floor and taking off my own she disappeared into the kitchen pushing the box ahead of her.  Ah so sweet so she got off without a telling of about hanging up her coat.  Clever girl.  When I got into the kitchen the box was not only in there but she had pulled a chair out from the table and lifted the box onto it in her attempt to get it on to the kitchen  top.  Top marks for thinking ahead.  She struggled though to lift it all the way to the top so we saved that until we emptied the box. I hugged her for her help and she old me the she loved me ad that she kew i could not lift heavy things so in future I must leave them all to her!.

 I asked her which two her mommy should have {we mostly get five and my daughter pays for and takes  two but due to holiday we were only having one}  She looked at the pictures of the three meals and pointed to the two she wanted her mommy and Chris to have.  She said "they will have those two because they eat too much and the meals do not look too big"!  I must confess I laughed.  I need to point out neither her mommy or Chris are over large so not sure where it came from but anything that causes a smile is good. 

Since writing the blog I have added the sad news about Will Acres so this time I leave you all with a heavy heart.  I know you will send much love to the family of Will.  I am sorry to leave this blog on such an un happy note but Will deserves our thoughts and his family our love.

Carole xxx

Tuesday, 23 January 2018


Home again after a three day stint at the hospital for the final testing since my denervation, excluding a few follow on telephone calls.  So in the space of a year my pressures  have dropped quite well and my blood flow has improved marginally.   Any improvement, drop etc is great news for those suffering with PAH and this could just be the procedure to push back those numbers in our lungs.

I can't speak for anyone else as to how they are doing but for me I have to say having had this done it has been a success.  The truth is we have no way of knowing if they will continue to drop since the small bronchi that caused a lot of the pressures have been damaged.   Deliberately of course to try to stem the rising pressures.  As we are not very long into this procedure, (actually only 13 done so far as opposed to the 15 I thought) it is early days but we can hope that this proves to be a game changer.  I feel blessed to have been one that was able to participate in this vital research and I pray it continues.  

I know that this procedure is now being done in America and my doctor that performed it here is carrying on the work over there.  Trust me if you are offered this have no fears.  The procedure itself, though it sounds daunting is really not and the end result may quite well be similar to mine.  Nobody can say at this stage that it will work for all but maybe you give it a go!!  I await with you all the day we can say we USED to have pulmonary hypertension 

One lovely thing was when I was waiting to go into the theatre for my extended right heart cath was that I once more saw Dan, he was the nurse that took such good care of me both in the theatre working with the team and afterwards in the after care.  I have seen him each time I have gone back to Northern General and it was great to catch up with how things were.  When I  was being wheeled out of theatre I said to the gentleman pushing me I really needed to see Dan as I wanted to tell him my pressures had dropped, I knew he would be thrilled.  How blessed I was that once again he had swapped patients and took care of me.  We with ph are truly blessed with the people that care for us.  

Back at the hotel I was obviously elated so I rested for quite a while and then we went out for a nice meal to celebrate.  It did not take long for me to drain of all energy which surprised me but I think sometimes even good news can tire us out! 

Monday was my MRI date and so I expected it to be a rather long laborious time in the machine.  I have no fears of them but I just knew I wanted to get home as I have so much to do!  Actually it did not take too long and tacked onto the end was another bit that was actually something they needed to begin another trial, not one I am to be involved in but they just needed a willing patient!  

I managed to get up onto M2 to meet up with Lucy Smith who is to  begin to change over to inhaled medicines as she has had many problems with the iv line.  She looked to be in high spirit though missing her children very much.  Sadly I could not spend long as I needed to get off but once agin I have put a face to the name of one of my ph sisters which is always lovely.

Phil Marshall

I am sure most of you like us here were glued to the little blue dot with the number 182 on it as we watched Phil run over six days and nights to raise money for the ph charity.  His aim was to raise £3000 but this was soon smashed and it rose to £5000 which was his new total.  Even as he began his run he could have had no idea as to how enthralled we all were with what he was doing.  This was no normal marathon, no this was a run across the spine of England, one of the most brutal races in the world, in the worst weather conditions and the race was 268 miles!!!  All of this for us because his lovely wife Sarah has pah and is awaiting a heart and lung transplant.  Well he has almost reached £10000  yes ten thousand pounds!  Mind you this was so enthralling  and most of us sat watching the blue dot with tears in our eyes as we saw just how hard this race was.  I know myself and Helen, another ph sister were messaging each other in the middle of the night whilst watching how he was doing. We saw people dropping out like flies as the going got way too tough for even the hardiest of souls who had completed this race before.  At once stage I must confess I even willed him to stop as he was racing in waist deep snow drifts and with sickness and diarrhea and my heart wept for him.  Did he give in, not on your life, he battled on through all the weather threw at him, all the tummy bugs he coped with and with jubilation we saw the blue dot reach the end!!!!!  Words cannot really explain the awe in which we hold this young man in.  I hope the donations reach to the £10000 mark, he truly deserves every penny raised for our Pulmonary Hypertension Support Group. 

Steph Ingram

We were all wondering and worrying about Steph as we had heard very little since she had her lung transplant before Christmas  Fortunately we now know that the lungs have taken well.  Steph needed a few bronchopys { wrong spelling } and a tracheotomy but now is coming on great.  She has lost an awful to of weight so an aim is to get some of this back.  Right now she is still residing in critical care but at last things look to be on the up for her.  This news was met with relief all around for many of us who have been waiting with bated breath for news.  Of course she has just been too ill to post, she did not forget us and our support is helping her enormously to cope with all that a transplant throws at the recipient.  We all wish her well and now things are moving forward a speedy recovery.

Skiing and buffs

We bought Izzy a new buff ready for her skiing holiday next month.  She absolutely loves being able to do all the various things with just a twist of the material here, a tuck there.  The one she hates and says she will NEVER use is the ones that goes over her head and sits beneath her chin.  She says she looks like and old woman but was quick to follow that up with "but not like you grandma"  Thank goodness for that.  Though now knocking on in years I do not want to look like the grandmas we had in the 50's.  

So once again she will shortly be heading off for her annual skiing holiday.   Though she goes reluctantly cos she is lazy she actually loves it when she moves on with her skiing and her and Harrison talk about their day when they all meet up after their lessons.

A holiday she is looking forward to though is one with her Nanna Joy and Harrison.  Joy is taking them both to Centre Parks and it is one we have taken her to before so she will remember so much of it and will look forward in particular to the slides in the pools. She tells me they have added another slide so she will be in her element.  I think it is so lovely of Joy to take them both together but brave at the same time, I have got out of the habit of looking after two little ones together.  I look forward to hearing their news on their return.  

So I will leave this blog now as I want to get if out today. and I want to go down and see how our house build is getting along. At least we are almost at the end of choosing our kitchen!   Love to you all and once again please comment or at least click the like button so I know you are interested!!  

Warm love

Carole xxxx

Tuesday, 9 January 2018


Apparently I MIGHT get another year to live!!!!!

No this is not a doctors advice to me at all, no statement as to the longevity of my life.  This was a statement told to me by my granddaughter Izzy.  I have had a lot of nosebleeds, 7 in one particular day and they were not tiny ones, well at least five of them were not.  She takes all this in her stride as she has lived all her life with me having ph and all it entails.  However I  had to smile at her latest remark  to me.  I was in bed with the sick bowl and blood dripping merrily into it through all the tissues I had stuck up my nose, I had run out of tampons that I plug my nose with generally as as I had had such a run on nosebleeds.  She came into the bedroom and calmly told me to rest.  She said "rest now grandma and you might get another year of me, then with a shrug of her shoulders she followed that up with "but you might not" and blithely ran out of the room to see grandad!!! 

We have always been honest with her with regard to my illness and she takes it all in her stride.  I hope she is wrong and that I have many years to live, that the cure is found for EACH AND EVERYONE OF US, we certainly all deserve it.

Thank you Jayne Venables for this.

Opening my computer this morning I saw this old post from Jayne.  I have no idea who wrote it in the first place but for any ph fighter it is a very profound piece of work.  I wanted to share it with you, it deserves to be seen by as many as possible.

"What It's Really Like to be Chronically Ill
Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.
I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.
Being sick isn’t as glamorous as they make it out to be in the movies. And unlike cancer perks, there are no “chronic illness perks.” Except maybe those really good lollipops at the doctor’s office. Those are definitely a perk.
The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?
The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?
Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.
There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal.
I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.
You learn to love every good second, every good minute, of any of those few good days you might have. You don’t fear death because you’ve already stared it straight in the face quite a few times. You know it’s not important to dwell on the little things. You have more important things to worry about.
So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular teenager.
Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end."

Denervation news

As many of you know I was the 8th person out of 15 worldwide to have a procedure called Denervation. . This is with the hope that it lowers the pressures in my lungs  If it proves to be a success it may become another procedure to help us all to live longer whilst fighting ph.   At the last testing it had lowered slightly by 6.  Now my appointment has arrived for the final MRI and Right Heart Cath.  

 The denervation watch has arrived, (I need to wear it two weeks before my tests so it will be interesting to see how the results are. This watch monitors so much of what is happening in my body.  I cannot see any of this.  After two weeks the results are downloaded and sent off to Israel,  It was Israel who came up with the idea and it is them that pay for all costs relating to this procedure. To be honest I have not been the best these past few weeks so I am not expecting amazing result.  This is sad as I so wanted it to be another option for lowering the levels in our lungs.  Anyway I should not jump the gun and we will see what we will see.

Alex ( the Doctor who carried out the procedure) is currently in America but will fly home in time to do the right heart cath.  There has been a great deal of difficulty getting theatre time and MRI time so I believe my right heart cath is at 7.00 a.m. on Monday the 22nd January.  This means an overnight stay at a hotel on the Sunday and Monday. Sunday we will do all the usual things, bloods, walk test etc so I am ready on the Monday for the cath.  Tuesday I am having my MRI and then after talking with Alex it is home and the end of any more testing for denervation, though I believe they will follow up for two years with phone calls.

I am looking ahead  to my next rial.  Not sure which one et though I have been in touch with one of our specialists who has always hoped to trial one this year.  I have asked him how far off he thinks his is, can I get another one in before his goes to fruition, we shall see.

Update on that.  Nick who is hoping to trial a new drug said it will be another 1 to 2 years before it is ready to trial so said I have time to get another trial in!  Hey ho here we go hopefully.  

Count your blessings

How easy it would be to go into another year with our hearts downcast at the life we now lead with ph.  However I feel sure each and everyone of us have some things in our lives to count as blessings.  I know I have many and when I am feeling downcast because of the things I can no longer do I sit and count my blessings for the life I do have.  I could have lost the last seven years of my life without my amazing A Team who have taken such good care of me, without the research always going on etc.  So I have much to be thankful for, seeing Izzy growing up, my daughter getting engaged to a guy I really love and my son so happy with his gorgeous girl.  All of these came since I was diagnosed.

We did not do anything much to mark 2018 but we were invited down to our friend's house and cabin  There were six of us in total and we had cheese and biscuits, mince pies etc and of course champagne to mark the beginning of the new year.  It does not take much to make me happy at all, just small delights now, just enough for me to cope with.  Nights at the theatre are long gone as they are too late for me and certainly I can no longer  travel too far to enjoy the lovely musicals I enjoy so much.  So just the small things make me happy to be alive.  I count my blessings every day for sure. 


This is getting scary really.  It has now been seen in almost every part of the UK, though strangely enough not in London.  We are being advised not to shake hands, operations have been cancelled and doctors are working flat out to try to manage the demand after being told to keep patients out of hospital if they possibly can.  After suffering flu once when I was healthy I cannot bear to think of the consequences if I was to come down with this now.  I lost a good fried, a previously healthy 34 year old man to flue around 30 years ago.

I have given Izzy her own little pot of hand sanitiser which is supposed to kill all germs of up to two hours, I also told her to rub a little under her nose.  No idea if it can help to stop bacteria going up her nose but I will try anything.  Our mouths are a different thing entirely.  Yes I always knew it would be scary when we were first told about it but now seeing the facts laid out before us of even the young, fit and healthy succumbing to this dreadful disease I am even more aware than ever of trying to stay away from bunches of people than ever.

At my church yesterday I told them  would not be attending for the next two weeks.  If I get something like this then the testing of the denervation will be off and so many people are involved I would hate  the careful planning to go to waste.  I pray you all keep safe from this, take all precautions necessary and dodge a bullet.

Trump and Kim

I am not getting involved with any of this except to say GROW UP.  To read and see the headlines on the television where they are trying to outdo each other with the size of their nuclear weapons is so awful..  "Mine is bigger than yours" is a line Trump has used.  I think it is so scary to have two power hungry people in charge of a button that can kill so many.  We are way off living in a world of peace and harmony I know but I sill think it is so sad that we cannot get on together, that the world is filled with wars, starvation, despair and all the rest.

Periwinkle Candle

Over the last two weeks we have seen this candle a few times.  It depicts the death of another ph brother or  sister.  Lost to an illness that hits us and gives no mercy, young and old alike, the fit and the healthy, struck down in an instant with a deadly disease that slowly builds its way up to a crescendo with the end result being the candle we all recognise. My heart goes out to each and every family that has lost a loved one to this disease, all keep phighting and maybe we can find a cure in 2018.  

House build

No work has been done over the Christmas and New Year period but it begins again today.  We are on our way down to see the site and to take delivery of our one and only appliance for the kitchen our new dishwasher!  I will keep you updated when we get a bit further.

Now I have to get off this computer, Colin has so much work to do with regards to the new house he is being hampered by me!!

I bid you all goodbye and I wish you warm love.  Please please if you like what you read then click the look button or comment.  it really maters so much.

Thank you so much

Carole xxxxx