HERE WE GO AGAIN

I must confess that this joke did make me smile,  I hope it does you too.  Once again here we all are facing shortages of one thing and another with worse yet to come we are told.  The petrol one was ok for us, we have to be honest been very fortunate.  Plenty of petrol, no queues and plenty of fruit and veg at our stores.   We are not sure if we will continue in this way or if we eventually will get hit as other parts of the country have been.  I just hope we can ride all of this out but not so sure with France threatening to blockade the ports.  Time will tell.  Anyway I thought it would be good to begin this blog with something that made me chuckle.

DENERVATION

Once again after speaking to my specialist I have been informed the my ph levels remain between 30 and 35 so not bad for somebody who should have died 11 year ago.  I do hope that when everything is collated re this trial that this is offered to more and more patients.  Though quite a complex procedure and yes painful I have never once regretted it so I do hope more of my ph family  benefit from this and remain in a stable condition too.  All in all my ph is well controlled which is for me as good as it gets. 

TIME AWAY

We did manage to get away for three absolutely splendid nights at a first rate hotel with the most fabulous food last week.  We went with a couple of good friends and did not seem to come up for air whilst we were away.  I must confess that once we got home I had a much deserved resting day.  We walked around Tarn Hows, went on ferries, checked out once again Beatrix Potters place and took a boat trip around Lake Windermere.  We shopped in Bowness and went to look around  Wray Castle.  We are still very cautious and stayed as far away from people as and when we could and wore masks most of the time.  

Just before we left I realise that my walking trainers needed replacing.  There was very little sole to protect my feet from the cobbles on the old roman roads around here and I did not wish to walk in my walking boots.  Clearly a new pair were needed.  I cannot begin to think about how many miles those trusty walking trainers had taken me but they had done their job well.  A walk around some of the many outdoor pursuit places in Ambleside and I came across the perfect pair.   Gortex lined -  a must, a good sole to cushion my feet and the type of fastening where I could easily lock in the laces half way down the shoe.  Merrell was the one I opted for and they were immediately comfy so I was set to go on my walks again without hurting my feet. 

FACING UP TO REALITY

Yet once again on our return we had to deal with the old problem of the guy from the apartment block where we used to live, he was to stand in court to answer charges for his harassment towards Colin and to some degree to myself.  As we always thought he would, he pleaded guilty at the final hour so really we were not needed in court.  We did however want him to see us there to let him know that we were not intimidated with his threats and to see him get his just punishment.  The judge was rightly hard on him when talking to him and left him in no doubt that should he go before that court again with similar charges his punishment would be very severe as this was his second appearance on harassment charges.

He did hand a letter of apology to the judge and said he wanted to give it to Colin but was not allowed to because of his bail conditions.  We did not see the letter as the trial has not finished yet but Colin said he does not wish to see it anyway.  Generally we are people who can have differences with people but once it is over it is over, such as the last time he was in court and sentenced we shook his hand and said it was over and we should all get on with life, but not this time.   Enough is enough and we want nothing more to do with him, although in four weeks time we will meet him in court once again when he is sentenced.  He should have let sleeping dogs lie after last time but no, he is one of those bullies who when he thinks nobody else can see what he is doing keeps coming up for another nip.  I know one or two others like him and generally once I find out what they are, steer clear of them.  

One sad fact of this is that a lovely lady who held the chair on the committee has had enough and sold up and is ready now for moving out.  All because of this person.  

GENERAL

Izzy is away on a trip with school.  Got loads of pics of her abseiling and making canoes etc.  We will collect her when the coach drops her off today and are looking forward to hearing her tales.

All still going good with the wedding plans.  Colin needs to get his suit fitted at some stage but I also want him to get off for a few days before 18th November when the court date is set.  Still nobody has seen my outfit for the wedding except for the friend that went with me to choose something.  It is sitting nicely in the spare room next to my daughters wedding dress.   

I have two dates this month to see orthopaedic specialists.  One is here where I live and the day after one is in Sheffield where I attend my ph clinics.  This one is to talk me through quite what will happen if surgery is indeed deemed absolutely necessary.  I already know there is a high risk of death, stroke etc or not regaining the use of whatever pulmonary pressure I have now but we will need to weigh up the quality of life and make that decision together.  It is just a bummer that not only do I get such a devastating disease as the rare pah but also issues with my bones too!  

We both have colds and did do the covid tests just to make sure nothing sinister was lurking but no, all clear for covid which is a relief.  We still wear our masks and still do our best to use the two metre rule but this is quite difficult as others do not seem to be bothered.  Me and Colin attended a dinner for a village somewhere in the third world where nobody wore masks either to enter or leave.  I won two raffle prizes which I was shocked at as I rarely win anything.  The prizes were both bottles of wine and wether good or bad wine I have no idea as I do not drink but a nice thing to win anyway.  

Right time to get off this machine as I know Colin is itching to use it.  I have now got a mini iPad as it is so light to hold but for things such as this blog I need the big machine to type on.

Thank you to those that messaged me to see how I am as not much input fro me on facebook for a while.  All to do with technical issues I can assure you, I am not doing too badly at all.

Tons of love to you and please write me a line or two if you can.

Carole xxxx

COVID. YOU HAVE SPOILT SO MANY PLANS FOR SO MANY.

Today reluctantly we cancelled our ferry - the first stage of our holiday in Javea.  Though we felt safer travelling on the ferry as we could isolate easier than being in an aeroplane or an airport we still felt uneasy.  Not least was the thought that England could easily go on the red list or Spain could be. This could have meant us spending two weeks in isolation on our return in a hotel where reportedly the food is not the best and of course being in isolation we would be paying £4000 to still clean our own rooms and make the beds.   When I go into a hotel I like to be taken care of and for almost three hundred pounds a night I would like more than what was being offered.  

We are both sad as the thought of spending six weeks in our special place was heartwarming but we were fortunate enough to have the foresight to book flexi tickets ( actually our friend Freda advised us) it does mean that we can change the bookings to anytime next year.  In March the ferry company is getting a new ship so it will be good if things settle down and we can travel on this one, should be nice and clean at least.  

Sadly our daughter has had to inform school that Izzy will be needing the morning and afternoon club which in reality was unnecessary as we will still be here and not in Spain as we expected   Still as Chris says it does give us a break and we can still take or collect her as we feel though the money will already have been paid for this service to the school.

THINGS OPENING UP

At last appointments are becoming to come through for the many of us who have had to wait for consultations.  My ph clinic has always been in touch since lockdown but things such as endoscopy clinics etc have been virtually impossible to get necessary things done, my last colonoscopy was done three years ago despite my being told I would need one every year.  Fortunately I have last week received my appointment for 1st September, so begins my sorting out  when to stop warfarin, when to change my diet and of course the awful prep medicine,  I hate that worse than the colonoscopy itself.  So roll on Wednesday 1st September which will be one less thing to worry about.  On the Sunday before I go for one of their own covid tests and I am then to isolate until my colonoscopy.  This won’t be hard to do but it will mean I can’t walk outside as I cannot promise that no matter how hard I try I won’t come into contact with covid.  I will not be able to complete my walks for my study but that is something I can’t help.  

My ph team are ringing at the end of the month for an update on my ph which in all honesty right now is pretty good though I do tend to drop asleep in the afternoon.  Since being told I now have mild copd and my local hospital wanted me to have oxygen at night I have begun to understand why they want me to and wonder why I resisted.  I would like to hear from some who have night oxygen as to if they do feel better through the day.  You see I can still walk easily six miles a day, more if I choose to so what difference will it make.  It is because I explained how much I can do that they stopped trying to get me to have it.  Have I cut my nose off to spite my face I wonder.  The hospital did say if I did not have ph they would feel it was unnecessary as the copd is so slight  but because I had ph maybe I should have it.  I am lost so feedback would be appreciated please.  Is it necessary to have that awful face mask or can we just have the prongs up each nostril if it is mild copd? 

I am going to talk to a specialist about my back at the end of September and am awaiting an appointment to talk to a hand and wrist specialist to see if I have arthritis or if my silly hands are the result of my back - all a nightmare.  

TRYING TO GET SOME NORMALITY BACK

For the first time in YEARS my sisters and I met up for a lunch a couple of weeks ago.  It was really lovely catching up together and we have said we will do this once a month.  Of course it won’t always happen as things crop up but whenever it does happen it will be great.  We have all gone so long without living a normal life due to covid and although we are still wary and take all precautions we want to see our friends again.  To that end I went for a lunch at a swanky restaurant with a really good friend in Leeds last week.  I still wear a mask as does my friend but there were more people without masks than with so I still found myself trying to do the two metre rule even outside.  We both said how quickly it was that people seemed to be unaware of covid!    It was like it no longer exists.  It still shocks me in supermarkets when I see so many people not bothering to clean their trolley or clean their hands.  For sure it will take a long time before we will alter how we have lived these awful months though we will try to meet up with good friends and family.  It’s a hard call and of course everyone lives their life as they choose.  

PH FRIENDS ON HOLIDAY 

It has been lovely to see lots of my ph friends going on holiday at last, in particular two that I know well that are transplant patients.  Lyz Clements has certainly enjoyed her holiday with her family  as too has Catherine Makin and this is heart warming as they are both recipients of new lungs donated by very generous people.   Lots of ph patients are waiting for new heart and lungs or just the lungs and it just shows that by the very generous donations these two are very much enjoying life even though transplant brings with it many issues.  If anyone reading this has not gone on the donor register please give a thought and add your name and inform family and friends.  Though you may think that we now have the automatic right for doctors to remove anything they can use the real truth is that if your family disagrees then mostly the doctors go along with the family so please get your donor card and discuss so there will be no issues if sadly something happens to you. Please it takes no time to do this and hopefully we will get more people on the transplant list getting their new organs.  Remember it could in the future be you or one of yours needing this very generous donation.  

GLOBAL WARMING

What a nightmare this is and so very worrying as some specialist in this field have said if we don’t turn it around in the next 20 years it will be irreversible.  We do all we can, all my rubbish goes into the correct piles for recycling and food waste goes into our compost bin, we save rain water in our butts and if I just want a few bits from the shops I use that as my walk as generally by doing so this can mean I at least get four miles in.This saves taking the car out.  I generally walk to my hospital appointments such as warfarin and that is a few miles round trip.   Our house is eco friendly so we do our best to change things and how thankful I am that our longed for log fire was not to be in an eco house . The government will be needing to look further into this we are told and it may well be that our beautiful log stacks for our outdoor fires will not be allowed due to carbon emissions. However one thing we were doing has been a worry. Will we be able to turn around global warming in the next 20 years, I don’t believe we will and though highly unlikely I would still be alive we have of course our children and grandchildren’s future to think about.  

The government are talking about changing boilers in every house at a real cost both to the government and to the householder.  This idea is a good one but they must remember that there will be some who just cannot afford any of this no matter how small their cost in this will be. Hopefully they will look kindly at all circumstances and deal with them accordingly but I do suspect there will be lots of people worrying right now.  There is so much to deal with to turn this nightmare around and whilst our government has such plans there is of course China who does more to global warming than any other country and they refuse to change. The cards are not stacked well and I fear they will fall down over the coming years.  Very sad. 

Last night after typing most of this blog I went to bed to watch the film KNOWING.  It did make me think if our warning is not heeded quite how our end would come!  

GARDENING

Our sweet peas have been amazing this year, every day we pick one or two bunches and still they grow so quickly!  Next to them I have my tomato plants which have really big fruits on and I am just waiting for them to ripen.  We have had our fill of purple sprouting broccoli from our garden and Colin has just bought in another big bowl of strawberries for tea, very sweet indeed.  We have eaten our fill of broad beans and I have also frozen some after blanching.  The last of our  cabbages have gone now and this does give our leeks more chance to get the sunshine.  We ate many peas from the garden too.  Our onions are doing very well and I have decided to plant potatoes in the raised bed now almost empty ready for Christmas.  The apple tree is heavy with fruit, just waiting  for them to get fatter.  We did go wrong with the blueberries.  We had lots of them on the bushes and Colin took Izzy away and I admit to leaving them on the bushes only to see on his return they had all been eaten - whether by squirrels or birds who knows. I am just waiting for our plums to ripen a little more and then will pick the lot in one go and freeze them.  I will admit to it being harder this year to keep up with everything due to the weather but we managed not to lose anything.  ( except the blueberries! ) 

WEDDING PLANS

 

Colin is shortly going to go to get fitted for his wedding outfit.  I still have not got mine for the day though my evening one is waiting in the wardrobe.  I am dreading looking for my day outfit.  I do not want to look like a typical mother of the bride with a hat and a very safe outfit with a jacket.  Of course I also do not want to let my daughter down so I do not know where I am headed.  Izzy still has to get her dress and I am not sure what type she will get.  I am pleased that Danielle has her dress which is really lovely.  A t least as we have now cancelled our holiday we no longer have the concerns about will we be back in time for it.  We would be devastated to be stuck in Spain no matter how much we love it when the day of the wedding came around.  Now no chance of that.  So we are playing life as safe as we can and always hoping of course to stay as fit and as well as we are.  I am aware that there are people facing serious illnesses and so am always grateful that yes we have issues but none that at the moment are too devastating.  

LAZY SUNDAY

How do you spend your Sundays.  Generally Colin goes for a bike ride and I go for a walk.  This week we have decided to have a walk together.  I am pleased about this as it is always pleasant to have a companion.  Avril who walked with me twice a week has abandoned me for a while to do lots of jobs in her lovely 400 year old cottage.  Since her husband died she has been considering so many things that needed doing to it and now is systematically working her way through them.  For us a very lazy day after our walk with maybe a late lunch out which I will enjoy.

I need to make the most of being with Colin as he has been away with Izzy and twice with his friend in the motor home and I have been home alone.  Yes I do enjoy my free time I admit but I do still like to be with him and walking is a nice time to unwind.  So what do you get up to on your Sunday’s,?

I know I do go on about walking as an exercise but in her latest blog our lovely Sarah Marshall did an amazing six minute walk test of about 527 metres!  Now I won’t tell you all of Sarah’s ph journey, you can read it in her blog but she has kept trying and trying to up her walking as generally she is in her wheelchair but my heart soared when this girl who was once on the list awaiting new  lungs has now been taken off as she is doing so well.  

Now I must get up to do what I must do on my machines to record my vital signs etc.  These are for different studies and I would hate to let down the medics who were  good enough to put me on these.  So I will say goodbye for now. 

I hope you are all keeping as safe and as well as you can, thank you for reading this blog and I send warm love to you all.

Carole xxx

STEM CELL TREATMENT FOR PULMONARY ARTERIAL HYPERTENSION

About three or four years ago at our wonderful conference held in Oxford where we learn so much about new treatments and things that are being looked into now one of the topics was about stem cell therapy for those with pulmonary arterial hypertension.  This is what  which I have and lots of us on these sites. Sadly it was still in its infancy then as a potential to cure our disease.  I took the name of the young man currently researching this and rang him a few days latter.  I asked if I could go on the list to trail when that stage was reached and he was happy to do that though he did say we are a few years off yet.  Well a few years have passed and darn it I cannot remember his name at all so can’t get in touch with him.  Instead  I did what lots of us do and researched on Dr Google and here is the latest data I personally can find.  

https://www.ahajournals.org/doi/10.1161/ATVBAHA.120.315052

I did also talk to one of my specialists who himself confirms there is still a way to go yet.  I have decided though to add this to my blog as I know somebody, maybe in America was on a trial for this and I wondered how she got on.  I have not seen any content relating to it since so maybe if you know who it was she could give us an update?  it would be very interesting for sure.  Stem cells can cure so much and if only they can find the key just think - we could be cured.  Our lungs would remodel to how they should be.  Oh what a perfect world it would be for sure for lots of us.  It would not cure any other things wrong in our world but the biggie would be gone - one day.

THE DOG LIVES

A few weeks go on one of my walks I was an onlooker to an awful thing ( I cannot say accident cos I don’t know if it was deliberate or not}  As I was walking along the Promenade I saw a lady crossing the road with a dog on its lead.  The dog was a gorgeous collie { I love these dogs ) and the lady was about three feet in front of the dog.  A BMW car came around the wide corner sooooo fast and ploughed straight into the dog - how he missed the lady I have no idea.  The car then did a u turn and sped off leaving the carnage behind.  I could not believe that in a few seconds or less this poor dog would suffer so much.  It was clear that he was badly hurt and the lady as I did not then know her name was screaming.  There was nobody else around and anyway it mattered not.  I went straight across to her and she was babbling, nothing really sensible but I knew she was taking the dog to the vet.  I offered to hold him on my lap in the back of the car so she could concentrate on her driving.  She had a car rug so i settled myself down with the rug and she put the put dog on my lap.  He wasn’t screaming, rather he was mewling if that makes sense.  Off we sped to her vets which is two miles from my house.  She kept asking me if he was OK  the truth was he was a mess.  All the fur and skin and muscle had been pulled away from the left side of his body but was hanging off!  It was clear even to me that there were broken bones.  I was so worried that this poor innocent dog would have to be put down.

It seemed to take ages to get to her vets but the reality is we were there in minutes.  She had rung the vet on the way in on her car mobile and said she was coming in, her words were garbled as she was in shock but I think she got the message over.  On arrival I just handed her the dog and without really a word from either of us she went straight into the vets.  I then had to get home with blood all over my legs and arms.  I just walked and hoped nobody thought I had committed an horrendous crime. I wondered for a few weeks how he had coped, did he die, what was happening.  I did say to Colin I believed I would see her one day on my walks.  Last week it happened.  Colin dropped me off where I generally would not walk, close to where the poor dog was hurt but another road.  There was the car and there she was too.  The lady it turns out is called Staff or Steff  didn’t quite catch it as she was busy tidying up her sons clothes for school, tucking his shirt in etc.  She was so grateful for my part and asked for my address so she could send me flowers.  I refused as i would have done the same for any animal.  Anyway it turns out the dog is called Jasper or Jazz   {he answers to both) and he LIVES.  Yes his wounds were traumatic and he has a broken pelvis and a broken leg along with having all his muscle having to be stitched back.  He needs lots of physio and it will be a while before I will see him walking but oh my the relief.  Friends have asked did I get his car reg and the answer is no as it all happened so fast.  I noted the drivers face as he sped off but could I pick him out in a lineup, likely not.   How cruel others can be to such an innocent creature as him.  Be sure I shall be looking out for Jasper on my walks when he is recovered.  He is only one year old so I do think that went in his favour.   

TRIAL DATE

Well the guy who is in court for harassment has pleaded NOT GUILTY.  Quite how he thinks 200 pages of abusive email sent to three people but copied into all in the people in the apartment block each and every time is not harassment.  The lies and the content are bad as is the language.  The court date arrived and when he pleaded not guilty of course another date and in the case another court had to be sorted.  Well of course it had to be didn’t it that it was slap bang in the middle of our holiday dates and as Colin is chief witness he has to attend!  We are gutted but so be it, we will move our holiday to a later date and in some ways it works quite well.  We now must leave at the end of October for six weeks rather than the two months I had hoped in Spain.  The guy never leaves well alone.  He has been shouting out at the window you fu..ing wan..rs to those in the car park, deliberately banging doors at 6:40 in the mornings as he leaves to go to the all night Tesco to collect yet more booze and twenty minutes later returns to more door banging and shouting.  Because of issues in the past with him it has been decided that we need security cameras on every floor.  He is the only person EVER to cause any issues here and it costs a lot of money to deal with all the things that he does wrong.  We need to try to stop him in his tracks.  After his last court case where he was found guilty I would have thought he would have learned a lesson but it seems the demon drink is making him feel invincible .  We feel pretty sure that just before his court date he will plead guilty to lessen the sentence he surely must have if the jury reads all the content of his mail.  We will not give him the satisfaction of letting him know how our holiday plans have had to change.  Our cleaner and her hubby are still happy with the new daters we have chosen to move in and house sit so that is one thing settled.  Our ferries are booked as I do not want to fly right now and we will take many covid testing kits and loads of masks.  As we will be staying at our cousins villa we are cut off from the world if we choose so will take care.  We are also hoping the change of dates is still OK for Paul and his wife as we are hoping to spend a few days in our old villa and with them.  They are so nice.  We hope all runs as planned but there is always an issue and mine now is my back - again.  We were also heading off to Scotland stopping off to see Paula (a fellow ph er) and her lovely hubby but that too is shelved for me.  I cannot imagine being in a motor home with this pain, I need to walk many steps at night, in and out of bed so I prefer to stay here whilst Colin goes off and does the walking for us both!   He will do lots of biking and lots of photography but for me no, I need to stay here.   

MAYBE TIME FOR SURGERY 

The pain I experience now is horrific  Nights are spent walking the floors and my hands and arms are numb so it is taking ages to write this.  The pain radiates all down both arms and my fingers feel numb yet burning at the same time whilst also feeling as if they are filled with glass splinters.  Once again thanks to my lovely A Team I am being seen next Thursday by a pain specialist - oh happy days.  Prof David Kiely rang me to tell me he was very pleased with my ph, he was jubilant and a lot of that is down to the denervation.  I am so thankful I was given the chance, yes scary, yes painful but also how it has helped to keep my pressures low is amazing.  So there we were, we were walking on the moors and David was so enthusiastic about my ph but listened carefully and took very good notes when I explained quite how my back had deteriorated so much over the last few weeks.  He wrote a letter to my pain clinic asking them to see me urgently and told them he has my MRI’s which were done thanks to another member of the team, Robin, so if surgery is required  to fuse my spine and I need further testing they are happy to do it.  He now states my ph to be level 2 which is a great change from a year ago when it was 3/4 but most of us know how quickly this can change so if surgery is required I would want it done asap.  I doubt they would wish to do it at my local hospital but Sheffield likely would as they have all the people that know how our hearts and lungs work with pah  and anaesthetic. 

Well enough from me now as my hands are really not wanting to work well at all and I have a chilli downstairs on the hob that will need stirring at some stage!    We also have a lady due to arrive to hopefully buy a bike that was Izzys but she has outgrown it now and we need the space it takes up in the garage.  At the moment we have four bikes in there along with my mobility scooter and car they take up loads of room.  

Feel sure we will be interested in the mach tonight against Denmark.  Hope the game goes well with nobody doing anything bad at all.  It would be great to win the cup but if not well done lads for the great games.  Sorry to watch Andy Murray loose at Wimbledon in his third match but good on him for trying.  How i wished Hazel Roberts who lost her life when having her transplant was alive, she too loved Andy and we had many discussions whilst watching him play before he had his his hip op.

Take care and warm love.  Thank you for reading.  

Carole xxxxx

IS THIS TRUE OR FALSE?

Whilst walking along the side of the river last week I saw a gentleman I see most days walking along without his dog,  I feared the worst.  As he came closer I asked him where his dog was and in a tearful voice he told me that he had died two days before.  Of course I said how sorry I was as he was clearly very upset.  He was walking in the opposite direction to me but I told him I would walk with him and he could tell me all about his trusty companion and also his wife who had died 6 years earlier.  He is a lovely man aged 84 and he told me what a great marriage he had had before his wife died.  I learned that he had always had dogs and all bar one were buried in his front garden.  When I asked why one wasn’t he went on to tell me something I had never heard of before.  I feel sure it must be true but wondered if anyone on here had heard the same.

Now it transpires that this  gentleman used to be a police dog handler, being in the force for 36 years and a dog handler for 17.  His dog lived with him happily and performed tasks asked of him to a high degree.  When his police dog died he said he was obliged to do what every dog in the police force undergoes on their death - send it be made into wash leathers!   It just seems bizarre but he assured me that it was the case.  

His latest dog died from a weakened heart at the age of 12 1/2 and he told me that fortunately he was him him when the end came, a peaceful end.  He dug the grave himself and buried him beside his other dogs.  He was not going to get another one as he said it would not be fair as he could not guarantee at his age to be able to take care of him for the years expected.  I was so pleased I turned around and walked with him.  I hope he finds peace but it is sad he will now be on his own without his trusty companion.  

Pulmonary Embolism

On another walk the day after  I decided to sit down and take in the view.  I love this particular landscape, I played here all the time when I was young.  

I sat on a bench that was dedicated to the memory of 

Beth Claire Smith  I don’t know why I was so interested in this girl, we have loads of these benches dedicated to the memory of a dead loved one but I decided to do a little research.  I think it was maybe that she had died at such a young age being only 31.  It turned out that she died unexpectedly of a PE.  Now as I have pulmonary arterial hypertension I felt a connection because though yes - different medical illness - but pulmonary nevertheless - lungs connected us

I googled her and found out that she was full of fun and like me had been a member of a theatrical group. It was incredibly sad that this clearly much loved girl only lived for 31 years before dying so quickly and cruelly.  Lungs - can’t live without them.  This brings me onto the subject of Tammy Kincaid and her lung transplant. 

Transplant

Tammy is a young woman married to  Keiron  and they are parents  to a beautiful daughter called Tia who celebrated her tenth birthday only a day or two ago whilst Tammy is in hospital.  Recently Tammy was fortunate enough to receive a gift of new lungs.  Of course it goes without saying that all who posted on her website wished her well and that we all hoped for a swift recovery.  Well Tammy has done amazingly well and only two days after her op was sitting in a chair attempting to eat a tuna sandwich.  Shortly afterwards we heard that she had a lot of pain in her abdomen  and it was then found that during the transplant her bowel had been punctured.  Once they knew what had happened it was quickly repaired and Tammy went from strength to strength,  She is out of Critical Care now and posted us a pic of her room with a view.  She is hoping to go home in less than two weeks.  Her husband Keiron has been ace at keeping us informed of her progress and Jayne Venables of reposting on his messages to us,  I for one was so grateful to them both for this.  Tammy is now walking a little doing a lot of physio and her oxygen was at 97 I believe last time I saw a post.

Tammy herself thanks everyone for all the support and says she wishes to remain in the group as she received so much advice, help and support as well as being able to help others herself whilst she was waiting for her transplant.  She says she wants to continue to be able to offer it after receiving her new lungs to others waiting for their gift of a different life. I feel sure there will be many who like me will be pleased to hear this.  

We know life is not a bed of roses after transplant, ( sorry been told not to lump you all in with we but I cannot call you all by name) and that there will be hurdles to cross but I know I wish her nothing but the best and on the site there are others who have gone down this route, some having more problems than others but I never saw a post where anyone being given the gift of life regretted it.  Maybe you know somebody that does but I personally do not.  I feel sure these who fall into the category of having a transplant will be able to talk to each other and offer help and advice when necessary.  Go well Tammy have a speedy recovery and thank you for allowing me to tell this small snapshot of your journey.  What an incredible one you have been on. 

End of lockdown. 

For us we have decided that though we intend to live a little we will not be going mad.  Colin and I think we need to take things slowly.  One thing that pleases me is that funerals can allow more than 30 for those that wish it.  This news is very personal to me and I feel sure it will affect many others too.  Hugs - well apart from family those will not be on our agenda any time soon.  Though we have been advised that our Pfizer jab will give us 97% protection I do not believe that it is guaranteed with everyone and until all the no vaccine die hards change their minds we are nervous about the Indian Variant and the speed of its spread.  I still wear my mask around my ear when walking and move it to cover my face when passing somebody even at a distance of around three metres ( just in case) and in my pocket is always the hand gel that I use often.  

There is no doubt though that life will change and I refuse to stay indoors until such a time as covid is no more, I could be dead and buried by then and our lives are precious and need to be lived, albeit carefully but still we need to enjoy it and both of us agree on this.  We have even begun as I said in my last post of seriously thinking holidays though not going anywhere by air.   Nothing is set in stone but if the opportunity is given we shall take it and take as much care as we are able.  I do wonder how those headed out to Portugal will cope having to wear masks when sunbathing on the beach!  I wonder to how many will comply.  

I was not impressed with the time it took to lock down planes arriving from India when it could be seen just how bad the covid was.  In my mind there is no doubt that not acting swiftly enough has made the variant spread more quickly.  I hope that those offered the jabs now decide to take it up and get vaccinated for all our sakes.  We shall see and I was pleased to note long queues of young ones lining up to accept it in certain areas.  Long may it continue.  

An overnight stay

Izzy is staying with us tonight.  This is the first time she has been allowed since she went home after her four month stint with us. Both parents are working late and I am looking forward to a busy though tiring time.  I asked her what she wanted for dinner and her quick response was “your spaghetti” .  This is easy as I generally make two batches of sauce and freeze one.  Dessert is easy too, strawberries and raspberries, always a favourite as indeed is any kind of fruit salad.  She came round on Saturday to sort out her games cupboard and send off the ones too young for her now to her cousins. All are as new so even if Marcus has a similar one they can then go to a charity shop.  We are gradually going through cupboards and drawers and being ruthless.  We both love the feeling after it is done and more “stuff” is cleared out.  We are both over the top with things like this and hate clutter so our charity shops do ok out of us.   

Still walking

Just returned home from my walk before the heavens opened so not done as much as I would like as I have walked 6.68 miles.  I was smiling as I walked because I found myself as I often do asking Alexa to add something to the shopping list or a question about something I think of on my walk.  Of course Alexa is at home but I do this often.  Colin and Izzy look at me as if I have gone mad when sitting in the car talking to her!  I wondered is this me going loopy or do others do it as we now live in such a world where all we do is talk and give orders to her and our wishes are carried out.  She cannot understand me saying “ right” though and it drives me mad as she keeps on telling me she has done something and right and I am supposed to answer right.  She hears my “right” as eight and I say it about four times before giving in though I have begun to say OK now and she appears to approve of this.  

I feel blessed to be able to walk and I really do thank Alex at Sheffield and his team and the team from Israel that did my Denervation.  My hope is that when all the study is over and I do not think it will be long this procedure will be offered to more people with ph and help them to keep down the pressures in their lungs.

I am also grateful to all who always offer me help and support as I go through this pah journey.  The support sites are a huge help to me when things are going wrong - we have many twists and turns on this road we travel - and when the twists take me down a path I fear I will never find my way back from you all offer good advice and I am blessed to have such loyal ph friends as indeed family and friends outside of the sites too.  

So another walk over and I collected some leeks I had ordered to plant out but rain has stopped play, a job for tomorrow I think. Marigolds have been planted in my veg patch to try to keep the insects away from my cabbages and broccoli. Now I just have a small space left to plant something but not decided what yet before I begin to invade the flower beds and plant veg between the lavender and tulips!  

Well all I can say now is please enjoy your freedom but take the greatest care too.  I fear it will be a long time before lots of us feel really safe out in the big old world.  

Warm love and thank you for any comments

Carole xxx

PLEASE STAY WITH US.

There are quite a lot of our ph family who are awaiting transplants, maybe just lung or heart and lung.  Throughout your ph journey you will have asked and received support from your fellow sufferers. The same sufferers will have received much needed help from you as you go about your life waiting the longed for gift of heart or lung. If you are fortunate to be given the precious gift may I ask that you please ................. stay with us afterwards.

Over the years I have seen people on here very active whilst going through their illness.  From not being too bad with ph to gradually deteriorating with their condition.  They have asked for and been given help, comfort and support by all members of the various ph groups.  They too will have given their support to other members. This is what the groups are for and they work very well. I have noticed however that some sort of drop us or certainly push us to one side once transplanted with their beautiful gift.  It is such a shame as these same people that worried about you through your transplant journey, sent well wishes through your carers etc. still need you. You are not forgotten by us once you go into a different category so please don’t forget us.  

Of course we understand you will join a transplant group so you can once again offer support to each other and these groups will be hugely needed as you each find your way along paths many of us are never going to tread for various reasons.  Also we understand that you do not have as much time to spend on our ph groups as life is changing for you.  We do know that you will have many obstacles too overcome after transplant, we do get that truly.  However the truth remains that there are many hoping and praying to follow your path and will need to ask many questions of your journey after your transplant.  

Don’t get me wrong, not all of those transplanted leave us.  Catherine Makin for one is still a huge part of pulmonary hypertension groups and is a much loved member of the ph support group uk set up by our wonderful leader of the group Ian Armstrong and his team. I don’t think a day goes by when we don’t see her posts about her walks around her beautiful village or pictures of the flowers and birds in her garden.  Apart from the fact we love Catherine her posts show us somebody who has gone through such a huge step and is living a life.  Her excitement when each new goal is achieved is applauded and cheered by many of us.  We also know life is not a bed of roses after transplant.  These people have to go through so much and do so with determination and gusto for a life to be led.  Those awaiting and hoping for such a gift breath in all they can about their lives after their gift so how sad it is to see others leave us hanging after the support offered and given in their journey up to and through their transplant. Life moves on for us all in various ways and we are truly pleased you are still around somewhere but please if you read this come back to us, give the hope and encouragement so badly needed by those hanging on waiting for that gift you received.  If you don’t wish to come back however we do wish you well as you go about your life with your gifted organs.  In the meantime a HUGE thank you to Catherine Makin who has stayed with us offering hope to those who may be fortunate enough to join the list of transplanted sufferers and the few others i have not named on here who help us all too.  We do applaud you as you go on your journeys and thank you for not leaving us and continuing to show us there is still a life to be lead.  

June 11th.

The date in our diary when the neighbour from hell in our old apartment block will hopefully get his just desserts,  200 pages of abusive pages of e mails and also many Victim Statements are awaiting him and we of course hope for a decent punishment to be given.  Whilst he admits to sending them to everyone in the apartments he said he does not believe he is guilty of harassment.  Well we shall let the courts decide but I am pretty confident they would not be taking it so far if they felt all that was needed was a polite word to him to stop it.  It is a pity he does not rent his apartment as we could have grounds to get him out but alas he owns it so we are stuck with him. 

Life moves on

We both had our second jab last week and my daughter and almost son in law are awaiting their second one in the next few weeks with my son set to receive his first next week. Leaving politics out of this post I can’t help but be impressed by how this country has dealt with the vaccinations, Yes  there were mistakes made and these certainly cost precious lives but the speed of the rollout has also saved many and we are so thankful to the research teams and our wonderful NHS and volunteers who have worked tirelessly and continue to do so for us all.  One day we hope life will return to normal.  In the meantime we shall continue to take a great deal of care and continue to follow all guidelines.  

Iron replacement has no benefit.

Iron Replacement Has No Impact on PAH Severity, 2 Trials Show

I was actually shocked to read this as I receive ferrinject infusions around every two years since having ipah.  Certainly I have been much better and my exercise capacity increases greatly when I have mine,  Just before Christmas I was terribly poorly and was so out of breath and my heart rate sky high on just moving a few paces.  Life was pretty awful and a visit to Sheffield showed low ferritin levels.  A 12 minute infusion of ferrinject was given and I went home.  Now it takes around three weeks for the body to fill up its store after infusion but yes, it worked and almost three weeks to the day I was out walking again,  I noticed that gradually my breathing improved and at last I could see a huge improvement,  I am not one of those that feel better a day after infusion but yes, three weeks was all it took to get me to get to where I felt human again so a very interesting read from the research papers indeed.  I wonder if it means just generally giving ferrinject infusions in those that are NOT showing signs of distress,  I know I was on a study many years ago,  more than likely  this one as I have been on so many where despite no symptoms we were given infusions of one or the  other over a period of time,  For me though I know that many times when I DO feel so poorly that ferrinject has helped to bring me back to living instead of existing.  

The dress.

Can’t say much about this as it may be seen by those not allowed to have any knowledge of the wedding dress until the day but I will say what a privilege it was to see my girl trying on her wedding dress.  A day I never thought I would live to see cos of my ipah and I had a front seat view watching her try on beautiful gowns,  On the hangers they looked like nothing more than a froth of lace and ribbons and pearls etc. but my how they were transformed once she got them on!  Stunning they were,  Three were great contenders but when she tried on a fourth, the last one we knew it was “hers”.  She looked truly amazing and I know Chris will shed a few tears when he sees his beautiful bride, my amazing daughter walk down the aisle to become his bride.  I can’t wait for the day, excited already!   

Another A @ E trip

Not for me but for  Izzy. Her school rang to say there had been an accident and her thumb was hurt badly after having the heavy cones used to separate areas dropped onto it.  Apparently she was asked to help shift them and a boy dropped two on her thumb.  Grandad to the rescue and what we thought would be a long process ended very quickly and x rays done and her thumb in a splint she has to wear for two weeks and she was home before school closed for the afternoon.  Again thank you NHS.

Walking

Yes I do an awful lot of this for sure with an overall average  score of around  17500 steps a day or seven miles.  Whilst most of this is on my own I do have the company one day a week of a friend and if I am fortunate Colin joins me one day.  It was so nice yesterday to be able to meet up with two friends made when I began a walking group for the less able bodied many years ago,  They took me on a route long forgotten by me but it was one I had trodden many times in the past as I had a paper round along these ginnels and snickets. What memories it brought back and I aim to do it any times now since going yesterday,  Thank you Ann and Martin for awakening these memories and the hot chocolate at the end the walk was very welcome even though I am not a lover of chocolate!  

Must get this out as hubby is going off in the motor home again for a few days and he is the one that gets these out for me.

Please leave a comment and I will respond .  Go well and continue to keep safe.  

Warm love to all.

Carole xxxx

I AM A HYPOCHONDRIAC

I HAVE NOW BEEN ACCUSED OF BEING A HYPOCHONDRIAC!!!! 

Yes that is me, or so I have been branded by an idiot recently.  I have not even seen this person for over three years yet he thought to brand me with this name to all in my old neighbours!  It hurts so much to be called this as we with ph know just how hard it is for us to try to get on with life and to appear as normal as we can.  There is so much we go through unseen by many. I thought about all the things I have had to endure to stay alive and wanted to write him a letter to tell him so.  Of course I will not do this but if  I had done, my letter would probably read something like this, as indeed would many of us suffering with pah.  A friend told me maybe I should clonk him on the head with my oxygen machine (I only use it when flying) but I thought I would prefer to mow him down with my trusty mobility scooter.  My friends say I actually play DOWN my illness by generally saying I am good or if I am not well I say “ oh up and down you know” rather than feeling sorry for myself.  So for this guy to say this about me in an email to many has me livid!

I have been both enraged and hurt in equal measure by being branded a HYPOCHONDRIAC by someone. 

I could have fired many things back at this person through all his accusations and his libel but the truth is I won’t lower myself to his level. 

Given six weeks to live WITHOUT meds I had a line placed in my chest that led to my heart.  This pumped a drug every two minutes to keep me alive.  It was a hard regime to cope with and took 30 minutes a day to refill as such care needed to be taken filling the syringe and keeping things so clean and germ free. but the pump helped my heart. HARDLY A HYPOCHONDRIAC.  

I was given two to three years to live once the meds helped, this is certainly NOT A HYPOCHONDRIAC. 

The time line of my expected death up to date has never changed cos the reality is they tell me I should not still be alive.  I have chips  inserted into my chest and my pulmonary artery, hardly the thing for a HYPOCHONDRIAC to have.  These are looked at daily and  charts taken both for research and to monitor me remotely from the hospital.  I do this so studies can be done on exactly what happens in the heart and lungs of somebody cursed with this ONE IN A MILLION disease and to help those who come after.  

I was the second person in the UK and the 8th in the world to have my lungs “ microwaved” or Denervation as the correct name is called . Don’t ask how painful it was cos I can’t describe, no anaesthetic allowed for us due to our hearts and lungs. not something a HYPOCHONDRIAC would willingly do and not something specialists from Israel would fly over to carry out as they did if I was healthy.  However I have shown much strength and determination and take many medicines with horrific side effects in order to stay alive. I take oxygen often as and when needed as pressure in lungs changes constantly. and use a mobility scooter from time to time. To be accused of being a HYPOCHONDRIAC to all my ex neighbours is heartbreaking.  What will they think of me, especially any new residents?  My sleep is pretty bad cos my mind is whirling with the hurt of this accusation.  My resting heart rate has risen by 20 beats per minute through all this upset and poor sleeping and this is so not good for somebody already battling with a bad heart and lungs  and we are constantly told to avoid stress. I really need to rest easier.  Still through all this I  will not give him the satisfaction of responding to his libel, it is what he wants but won’t get from me unless and hopefully it can be addressed in court. I can furnish documents to prove all this and am happy for my medical files to be accessed to verify all. 

IT HAS BEEN A FUNNY OLD YEAR

Ring out the old, bring in the new.  These are words often spoken by many at the beginning of a new year.  However this can so easily be the words we are saying now as we begin to come out of lockdown.  What an odd time we have lived and are still living in.  Let us hope that things improve for us all worldwide and we eventually come to see this pandemic as just something we need a yearly shot for as we now do for flu.  We have a long way to go get though and indeed we need the whole world to be in a better place regarding coronavirus before this can happen.  I have so far received one jab of Pfizer as has Colin and my daughter who is a bad asthmatic and works front line has received her first one too a couple of weeks ago.  We can’t wait for the second dose. 

VIDEO AND PIC.

I was invited along with others to do a video to bring awareness, to tell my story and to try to bring hope to the newbies.  The T shirt I was to wear is one I have proudly owned for a few years now and bears the names of many ph survivors worldwide.  I was more than happy to do this and eventually it will appear on Youtube where hopefully it will bring a little hope and comfort to some.  As I was doing this I asked Colin if he could try to recreate the photo that adorned my Facebook page for many years, one 20 years out of date taken by Phil who is a good friend of ours.  Never liking my pic taken there are so few of me so it seemed like a good opportunity to do it.  I had make up on ( I loath the stuff preferring to be just natural) and my hair is greying but I did find a jumper a similar colour to the one from so long ago.  Anyway job done so now my new Facebook pic and the one on this blog is an honest one, this is me now so it will remain for a little time until we decide to change it.  

MRI’s

Whilst out walking a few days ago I received a call from one of my specialist doctors.  It was just a call to see how I was doing re my ph. As I stated I was having a walk at the time and told him I felt  my ph was doing good ( he agreed as he had seen some of my remote monitors) and I put it down to my doing more walking.  I told him i was happier walking as it took away some of the  pins and needles and numbness in my hands and fingers.  Delving deeper into this and asking more questions he became alarmed and said he felt I need an emergency MRI.  I laughed and told him that for years I have suffered a bad back and that this was just another episode.. The injections I used to have but missed through Covid helped this such a lot.  He said he wanted to talk to a neurologist and would ring me back.  My friend and I carried on walking through the woods at the side of the river and enjoying nature when the phone rang again. It was my specialist again who had made his call and they both agreed I needed to get to A & E NOW and arrange one.  I laughed and said it would not happen, we were in Covid and I was still waiting for an MRI re my back from eighteen months ago.  Long story short I did go and they did do an MRI and sent it through to Sheffield and my specialist.  The problem was they had taken the MRI of the wrong part of my back despite me reiterating that I was told my Sheffield hospital required a full spinal one ( they took the lower half) .  I was unaware of this and was left  in blissful ignorance until just a few days later and was again rung by my specialist to explain what had happened and that I needed to get over to Hallamshire the following day for another MRI and some tests.  We rearranged the care of Izzy and off we went.  Of course Colin was not allowed in and so he went into the local park to take photographs.  

Full blood tests were done and another Covid swab taken and then Robin my specialist appeared with his hammer etc to carry out a little investigation.  I hate it when my specialists have to do some things as they are all good looking and some things embarrass me.  I jokingly told him that if he were ugly it wouldn’t be bad him taking these tests but he was drop dead gorgeous so I was  not happy,  He laughed! He told the nurse that came into the room that when all tests were done he wanted to test my brain cos I had said he was gorgeous. . This broke the ice and without further ado all tests completed.  MRI done and then the wait for results.  It didn’t seem so long to wait and thanks to the wonderful staff I was rarely alone in my room away from other patients due to Covid restrictions.  ( my Covid  test came back clear ) Robin came and told me that though there was further degeneration of my spine it was ok.  He had however spoken once more to the neurologist and I would be receiving and appointment to see him.  Gosh it never ends does it but who could knock the care we received from this wonderful hospital.

SOMETHING TO LOOK FORWARD TO

Some great news we received recently and that was that my daughter and her lovely partner Chris are to tie the knot early next year.  Invites have gone out and next week I have been invited to go with my daughter to look at wedding dresses!  I am so excited as we just love Chris and to think my daughter will be Mrs Williams in the not too distant future pleases us both greatly.  They are having a small wedding at a very select venue with a bigger do in the evening if Covid restrictions allow.  Izzy is to be her Maid of Honour and our lovely Harry is to be the Page Boy and tasked with carrying the rings down the aisle.  Both children are so excited as indeed we all are.  Danielle’s dad will rightly give her away, we have always had a good relationship so there are no issues with this but Danielle and Chris want Colin as her step dad ( indeed he does think of her as his daughter as she was only young when we got together and married) want him to play a roll in this lovely day.  He is to walk down the aisle by the side of Izzy who said this makes her very happy and it will be to him who Izzy will pass her flowers so she can take her mommy’s.  Many arrangements are going on but at last this will happen. It makes me smile on the bleakest of days and I feel sure I will still be alive to see this.  

THIS  POOR CREATURE

Izzy has a rabbit, well she has two but one in a harlequin one and is so cute.  He is very loving and runs up to be petted and likes snuggles.  Sadly however he has developed an illness where he eats himself!  He has eaten two toes and his tail and lost lots of fur from his tummy.  There have been many vets visits and the vet said she has never seen a bad case of whatever it is ever.  Blood tests have been taken, poor Copper, still awaiting results but it is not looking good for him.  Her parents have  told Izzy she may need to return home to her mommy as very poorly.  Even I love this rabbit cos he is as cute as a button and as loving as one could ever wish a pet to be.  I had thought he was improving, indeed we were all hoping but today I was told by Chris he has started to eat another toe.   I do not think this bodes well for him.  Since writing this he has eaten part of his leg down to the bone.  The vet has bandaged it, upped the antibiotics and the pain killers.  He still appears so happy to see people, in particular Izzy. Whilst Izzy does see pets dying as she has had quite a few in her life the reason she will not be told this poor thing has to be put down is that she adores him so much and has seen him endure such a lot she will be heartbroken.  She will believe that he has gone back to live with his mommy as he is clearly poorly,  I feel the next few days will be the final ones for poor Copper.  

Poor Izzy was playing with a yo-yo in her garden the other day.  She was throwing it up in the air and her mommy told her not to do this as it was dangerous,  She carried on to her detriment as the yo-yo hit her in her mouth splitting her lip badly and also hit her front tooth halving it with the force.  It wouldn’t be so bad had it been a first tooth but this is a second one,  She was taken to the dentist who said she needs a lot out work on her teeth as they are growing very oddly at weird angles,  Sadly she will need work to be carried out  for years.  

 

GARDENING

We planted our veg out yesterday only for it to snow three hours later.  I do hope,they survive and I had hardened them off but we shall see, typical of our blooming weather.  We still have alpines to plant down the banks but will leave them for a while,  We have many stakes in for the veg and hope it deters the foxes using our patch as a shortcut as they do, last years they kept breaking my potato plants, 

Right, here comes the end!  I trust you are all keeping safe and well.  Please leave a comment or two and I will, reply. 

Warm love

Carole xxx