IMAGINE !!!!

Ahhh bliss.  It is Friday night and you have had a rough week at work.   Your boss has been on your case nagging you to up your work rate.  A colleague you relied on to help you is off sick so you are trying to do the job of two people but of  course the boss is either ignorant of this or totally unfeeling.  Still never mind, you are home now and it is family night,  Family night means movie night.  This is where you sit in your cosy lounge with your wife, two beautiful kids and a dog, or maybe a cat or two.  It is where you will play the movie you all decided on last week at the end of that particular movie night.  Each member of the family take turns to choose and this  time it was the choice of your eldest son,  It isn’t a bad choice either as it is a block buster movie that cost multi millions to make but it is already breaking all records for being one of the very best having everyone sitting on the edges of their seats in awe of the clever effects.  

Pizza made and sliced, lager in hand for dad and a white wine spritzer for mom, maybe cokes for the kids, and popcorn and haribo all well placed on the coffee table in front of you all and the movie begins,  The anticipation builds and everyone hushes up their talk to enjoy their family movie night.  Sound familiar, well this is played out in many homes throughout the world so it should do.

The movie is like many others before but the effects are, as it was promised the most realistic ones ever.  As you watch it  on your huge screen in 3 d you really feel you are living inside your tv.  You are a part of it, you feel every piece of the action.

The story follows the scripts of plenty of movies before, two parents, one a research guy working in a pharmaceutical lab, a doctor for a mother and of course the obligatory two teenage kids with their amazingly white teeth and not a pimple between them. The parents see the world is on a collision course before many others realise the enormity of what is happening and send their kids away to their holiday retreat with the grandparents.  This retreat is of course miles from anywhere and very well hidden, a safe haven in a world that will shortly be going mad. A 4 x 4 is needed to negotiate the rutted path leading to it and it is shielded from the world.  Inside of course is a well stocked pantry with bottled and canned goods to last for years.  Flour sacks are filled to the brim and a freezer, that works by oil of course is also filled with all the necessities to hide out for as long as it takes.  Spare oil drums are at the ready and tablets to purify the water that comes from a spring close by are there if they should be needed. Plenty of logs are already split and ready to warm the long nights and of course much wood is still to be had from the forest shielding their holiday retreat.   The well stocked cupboards  also contain multi vitamins the family may well need in the months and even years ahead.   Yes I know and you know the rest.  The father is intent on discovering a drug that can kill the virus that is killing the world and the mom is self sacrificing and is busy saving lives.  

Over time of course the electricity that is needed so badly in today’s society fails as the very men and women that work the national grid die to a virus that is so consuming, killing people  worldwide.  Telephones are cut off as things begin to fail and the men needed to repair the lines are either dead or isolating and the water companies that struggled for so long to give you this life saving drink loses its battle and fails too.  Sewage companies become defunct and many that do not die of the virus die from diseases spread by unhealthy living conditions. Aeroplanes were finished long ago as countries shut out the rest of the world to try to save their own and busses and taxis are long gone.  We see aerial shots of the towns and cities with cars spewed across the road, crashed into others, bodies thrown and left where they landed. The family dogs that were once so loved have now turned feral and are roaming the streets putting fear into anyone that has survived.  The stores - once so well stocked have been stripped of their goods, either by the people who saw what was coming and decided they would be ok and took all they could afford to buy. never thinking of anyone else to follow or were stripped and looted of anything left once the stores closed their doors for good. Little did the ones that stripped the shelves of the very necessities of life realise as they went out before the end to buy a huge freezer to put their food in to preserve it from anyone else that it would not be long before it would be stinking and rotten.  The reason being that the electricity needed for the freezer was cut off as men and women controlling the power needed fell to this deadly virus.  

So yes, how many films have we watched like this, the end is always the same, the father finds the cure for this deadly virus, the mom saves lives and the world has to begin to pull itself together to begin a new norm after such a catastrophe.  Once again aerial shots over the earth just a few years later show that nature is taking over.  The cars that skewed all over the roads are now hidden by grass and bushes, animals roam where the highway once was.  ( we know of course how the film makers made these scenes look so realistic as we had seen how it was done when we went to America at the studios.  The cars are in reality nothing more than miniatures and some clever people in the props department had worked their magic). but even knowing this did not make the film seem less real.  

Pizza eaten, haribo all gone and mom and dad a little merry from their drinks,  All is well with the world EXCEPT - 

here we are today, at the beginning of this nightmare. We see how very quickly people turn selfish and think only of themselves, emptying the shelves of anything and everything leaving nothing for the old, infirm, NHS staff etc,  We see a nurse who has worked a 48 hour shift come off duty to buy food only to find empty shelves.  She cries and films herself which is sent over the airwaves for us all to see as she tells us all to stop it and she is so right,  We need to pull together,  This is a crisis we have never seen before in our lives, it is taking the lives of loved ones worldwide and dividing families too. Not all of us will come through this.  Statistically some of us will lose this battle against the Coronavirus which is a terrible thing to think but we know it is the truth. We already have cities and towns in lock down.  Children are being taught at home as parents cannot leave the house, only the ones deemed necessary are allowed to go out  to work.  We must treat this as a war and unite and work together so that we all have the same chance of coming through this.

I do not envy any government having to deal with such a crisis as we are in.  Whatever they do they will be criticised, some things they will get wrong, some will be the right decision.  As for us all we can do is listen and take the advice we are given, stay home, disinfect, disinfect and more disinfect and stay away from your families until this virus runs its course or until the clever research guys find us the drug to kill this in its tracks.  It will take time but we are a stoic nation, we can sit it out and hopefully come through at the other end.  Boredom will be hard so try to find a new hobby.  Let’s hope that our electricity keeps going so that we can all keep in touch over the airways by whatever means, phone or computer.  Let us pray that our lives do not end like so many in the block buster movie we just watched.  

Us here and now

We have Izzy as her parents are key workers so have to go into work.  The only way we could work this is that she actually moves in with us for the  duration.  Though she could attend school there would be nobody able to collect her at the end of the day as we are in lockdown.  Of course we cannot have her go home to maybe pick up the virus and give it to  either of us but in particular me as we know all too well that my lungs  - so badly damaged already - and a heart already deteriorating cannot pull through this so here she is.  Until almost two weeks go by I cannot go too close to her so granddad is doing her schoolwork with her and being her plaything,  Whilst this is fun now we know this will wear thin over time and frustrations will surface. By then I hopefully will be able to take over some of the roll of teacher and plaything.  Until then over to Colin.   After school work they walk a mile around the reservoir over our road.  Very few people are out and those that are stick to the distancing rule too.  Covers have been taken off the furniture on the terrace and cushions put in place so that the warm days can be enjoyed by all, me when they are out and then we swap over when they return.  

I do my bit as I prepare meals when they are out of the kitchen and do housework etc when I feel up to it,  I hate to be a slouch and I hate a dirty house.  I recently began selexipag and today will be my second titration up to 600 mgs twice daily.  This drug does make me feel a bit “odd” for a couple of hours so then I do nothing but lounge around feeling useless,  This will change as my body adjusts to it and I feel sure I will benefit from this.  The timing of this drug for me could not be better though as we are in lockdown so I am not missing out on too much at all.  In the meantime Colin and Izzy have enjoyed fires in the garden whilst eating their lunches with a warm sun on their faces and Izzy enjoys FaceTiming her mom and dad in the evening when they are home.  She has a super bedroom and is delighting in making use of it properly now she knows she is to be here for the long haul.  Drawers are filled with her clothes, her toiletries are in the bathroom and she is fully ensconced in her daily life here with us. Daily she picks cabbage leaves from our garden and takes them next door to feed her rabbit before returning to us, When the time is right Izzy will be able to reconnect and hug her parents but at least for now when they are home she  will be able to  go into the garden and see each other for real as they live next door ( social distancing of course) but so far they are home too late from work to allow this. 

Colin sticks to a routine with Izzy with schoolwork beginning at 9.15 and break times etc,  

They have a curriculum set by the school and follow this plus Colin teaches her piano each day too,  Lots of playtime is going on and we have many games here that we all enjoy, though for now I am excluded.  Tomorrow they are both baking bread, from scratch, no bread maker  and they will compare the two of them when baked.  

Yesterday I did manage my 10000 steps by cleaning and gardening but of course not every day can follow the same pattern.  I am hoping tomorrow to clean all the glass surrounding the patio but as my meds will have increased we shall see how I react to the drug. 

We have questions that need to be answered.  Lots of you reading this suffer from PAH or ph and we need blood tests to check our livers etc monthly yet we are not supposed to leave the house.  I think shortly we should hear just how we are supposed to go about this plus of course warfarin blood tests,  I for one do not wish to be in a roomful of strangers all waiting these tests.  

Daily we vulnerable ones are told what to look out for and how to keep ourselves safe,  One problem is that the very things we are told to look out for most of us suffer on a daily basis due to the medicines we take,  We often have stuffy noses  - gosh am I getting a cold, coughs - oh my goodness I have a cough when in reality I have PAH, I always cough - achy limbs, well selexipeg and iloprost always give us achy limbs  - high temperature, well not yet but our meds do make us flush which could lead us to worry.  We will just take it on the chin knowing we have done all we can do and pray that the virus passes us by.  If it does not it will not be for the want of trying to evade it,  

Well time now for me to take my new drug and get up and dressed,  I have no plans for the day,  maybe make a fish pie as we were fortunate yesterday to have a stone of fish delivered,  No we were not being greedy,  We decided at the start not to hoard food but our fishmonger was closing his doors yesterday.  He knows we like the fat end of the haddock and not the tails.  Apparently yesterday a body builder asked him for £50 worth of haddock tails so knowing he needed to sell up and time running out he rang us and asked if we would like the thick part.  We agreed and he cut it all into individual pieces and wrapped them separately for us so we have plenty to go at and he was able to rid himself of the fish before he closed his doors, for how long who knows.  So we now have salmon, tuna, haddock and sea bass  aplenty and he did not have to waste any of his produce. His own wife is in lockdown so he decided he could not risk carrying on working and maybe putting her health at risk,  

So a tough time ahead of us all,  I pray for my family to come through this, my daughter and son in law who are working with the public each and every day, my son who lives in Leeds and will have no help should he fall ill to this, my extended family  and to all reading this blog,  Let’s all keep in contact, keep strong and look forward to when we emerge from this hopefully unscathed.  

I had better end this now,  Our friend Roger says I write books instead of blogs, sorry Roger.  X

Warm love to you all, chins up!  

Carole xxx

We have had such sad news from our  lovely Anna Caroline Bowen.  Her husband Del sadly lost his battle with the brain tumour he lived with for many years.  Throughout this time he continued to work, he supported his wife and children.  I met him a couple of times at our ph conferences and liked him very much. A quiet unassuming guy he was admired by us all as he coped with such a devastating illness.  Anna posted when he went into a hospice and it seems no time at all that he lost his battle.  This was such a hard time for Anna as she does not have a living parent and with two small children and suffering from ph and needing the pump to keep her alive this must have been so scary.  She was supposed to be in lockdown for her own safety but her husband needed her too.  One cannot imagine what she is going through right now and she has a lot to deal with in the weeks ahead.  Please if you can think of her and send her a message if you are connected on Facebook.   My thoughts are with you Anna and your family,  tons of love xxx

REMOTE ANALYSING - the future?

Raising awareness for remote analysing

On Monday I was fortunate to be part of a zoom meeting between London heart specialists among others and our own lovely Doctor Alex Rothman and lovely Jen, both part of my great team from Sheffield.  Alex organised this meeting and my part, though small was an important one.  As I have two chips and am also monitored by Sheffield via my fitbit it means that daily I can be monitored to see how my pressures are, how my heart is and how my exercise capability is.  It also shows them my oxygen saturation levels so if they think at any time I need oxygen ( please god I pray not ) then they know all my measures.  To this end I am spared for now right heart caths etc which cuts down on hospitals having to use facilities that could be better used for other things.  So when I was asked to give my opinion via my computer linked into their meeting I was only too pleased.  I related to them how I was very poorly with my pressures rising so high and my heart being under duress and I put it all down to the stress of my back.  My team however looking at all my figures remotely could see that I was in trouble. They quickly got on with analysing the problem, got in touch with my  local doctors and ordered blood tests and changed my medicines. All this without my leaving my bed!!  So thanks to the chips and my monitors I was spared what could have been a lengthy hospital stay and maybe an even worse degeneration of my heart.  I told them I just love being monitored this way, that it held no issues for me and that I considered myself fortunate to have been offered to go on these studies.  I hope that in the long term more and more of us can be monitored this way, it makes sense.  Anyway it is now in the hands of those that know best so we shall see.  

Coronavirus

On top of pah and all its issues we now have the coronavirus the contend with.  Bad enough for the healthy that may catch it but much worse for those suffering with chronic illnesses.  I am not panicking though as I think there is nothing more than we already do to try to prevent it so if I succumb to it then so be it.  Short of staying put in the house until it all blows over what can one do.

We already have a regime where anyone coming into the house uses a hand gel to help combat germs.   We began this years ago when I was on the hickman line and we learnt the importance of no getting it infected. I go round daily wiping all surfaces such as handles, switches, television remote etc and iPads.  I have always loved the smell of bleach and disinfectant so nothing changes on that score, we still use lots  of it.  When leaving the house I wash my hands with a soap that offers protection for three hours. On using trolleys etc I wipe the handle down first before I use it.  I carry a few dettol wipes in a ziplock bag for this.  What else can we do.  Clearly lots of hand washing but I feel sure that is part of our daily regime anyway.  I send Izzy to school with a small hand sanitizer for her pocket in the hope that it just might help her to ward off some of the bugs.  I refuse to panic buy and fill my shelves with food I really do not want to store.  I have a decent store cupboard anyway and think it will just have to do.  However though I am saying all of this I worry such a lot about my family.  I would hate for my son or daughter and partner and their children to come down with this.  The closest to us so far with this bug is in Leeds where my son just happens to live.  I just pray that he stays safe from it.

As there seems to be a shortage of lots of antibacterial things one suggestion is ( and a good one I believe ) was to use vodka or gin.  A doctor talking on the news said to just put a little on your hands and rub it in.  In actual fact it is cheaper than the antibacterial tiny pots mil by mil so maybe the way to get rid of any bottles of unwanted spirits!  

Izzy

She is growing up much too fast for my liking.  I was watching her washing her hands the other day and was shocked at how long her legs are now.  It seems only days ago that we had our curly haired chubby baby who always had a smile on her face. I miss that stage but am thankful to be here for every part of her life I have seen her through as my prognosis was so bad that it was feared I may not even get to meet her.  

All of these milestones  would have missed.  Yes I would not have known it but she would never have got to know how much love I have for her and how proud of her I am.  

She came bursting in yesterday to ask for a potato! when I asked why I was told she had to make something with it.  Potato duly chosen by her it did not seem many minutes later when this picture was sent through.  It is for school and I think it looks great.  I believe it is supposed to be somebody from Harry Potter but never having watched one I could not tell you who it is!  

She has a boyfriend called Ned, in my day boyfriends were unheard off until at least the secondary or grammar school.  How times have changed.  The family are going skiing again next year so to keep the kids up to speed they attend the dry slope close to us and both are enjoying it.  Izzy just needs to get a little more confident getting off the ski lift but that will come.  

A pah visit

We have had a lovely few days with a friend of mine called Paula Joanne Smitham and her hubby Neil.  I said they were coming and awaited their arrival eagerly. It was smashing. Despite the weather being about as bad as it could get it did not stop us walking on the canal and then catching a bus into the town centre where Paula had a look around our Piece Hall.  A little shopping took place.  Though we wanted to go to Shibden Hall, home of the late Anne Lister the hall was closed until mid March so we have that to look forward to on their next visit.  We must time it right though as it will be closed due to more filming taking place mid year. Right now on our televisions they are showing Last Tango in Halifax, I really wanted to show Paula all the places where it has been filmed as we live right in the heart of this beautiful countryside.  This did not happen but next tine we will visit Shibden Mill Inn for lunch and have a drink at the White Lion in Hebden Bridge, both of these eating houses are lovely and are shown such a lot in the series.  Paula also wants to visit the site where Emmerdale is filmed so we need a fair amount of time to achieve all of these goals.

This bit as no bearing on anything that happened with Paula but I need to "hide" it somewhere where Colin has read already.  He will have no interest in sewing so not bother to read it again, Question  Can one of you guys out there please explain to me why "man jobs" are always way more important than a woman's?  I ask as this morning as I was scurrying around doing my cardiomems, making the bed, putting away the washing and getting myself ready I expected a little help as we had a deadline.  None was forthcoming as Colin just did his own thing.  When I asked why no help the answer was that he had more important things to think about as he had man jobs to deal with later!  

We went into a fabric shop as Paula is an accomplished sewer and always loves to look around different sewing shops. On entering we realised that sewing classes were held here most days.  I sat with some lovely ladies who were quilting and they were a smashing bunch of ladies.  nyway the upshot is I have put my name down to join a group when a spot becomes vacant. Never before I met Paula would I have thought I would do that.  So with this in mind a germ must have been planted in her head.  Yesterday I received a parcel sent from Paula. On opening it was a thank you card for taking good care of them and then this oh so beautiful hand stitched with love by Paula sewing kit which held these lovely scissors, needles and pins.  On top of that I told her I like socks a little different to just one colour and she sent me these lovely socks too!  I love the sewing bag so much I cannot wait to use it!  Thank you Paula, you are so kind.  

Catherine Makin

It is so wonderful to see how well Catherine is doing since her lung transplant.  Now home at last with her family she will rest and regain her strength.  We are hoping to go and visit her in the next week or two but it depends how I go on as I will begin the dreaded selexipag next week.  We will have to try to see if we can fit in a visit before then and between our visits to orthopaedic specialist for my back and Colin's hip doctor  - oh the joy of growing old!  (we have just returned from Colin's appointment to be told all is good) so we are thrilled about that. 

Catherine is such a lovely girl and the shock of her having her transplant more or less as soon as she was placed on the list must have set her and her family reeling.  For quite a while she agonised as to even if she wanted to go on the transplant list but was advised by her team that it was the right time as she may have to wait years for one to come along!  Well it is all over with now, no more agonising will I get one or wont I.  I hope she continues to go from strength to strength.

Garden

I have been planting out spring flowers as I want to make the garden look pretty for when my sister in law and her hubby arrive for a visit in a few days.  Colin is working hard to get the vegetable patch finished ready for planting. I smiled to myself as I was directing Colin the other day where to put the plants and the snow was falling on our heads!  Fortunately the plants we have chosen are robust and will do nicely.  I bought them all for half price from B & Q. Not a thing wrong with them, strong sturdy plants but clearly new stock must have arrived so I was happy to take these old ones off their hands for a fraction of the price. We are now looking around for an arbour to sit where our barbecue will be. We think we have found he perfect one but Colin needs to do all his measuring just to make sure.  I cannot believe how far we have come in just a year of living here.  Crocuses are springing up around the garden in various parts of the lawn.  We have nothing like the 368 we planted but I think there will be many more to spring up yet before we are finished.  Mr Fox sees to have taken his bat home and we have so far not had any more issues.  I pray it lasts.  

And the misery continues

Though we do get an odd nice day here and there all over England we are still having far too  much rain for the rivers to deal with.  Year by year now it seems Hebden Bridge gets flooded and my heart goes to to all of those that have the aftermath to deal with.  We went in to the village a few days ago to go the the Rohan shop which always seems to escape the floods due to a tiny rise where they are.  I was gutted to see how much damage has been done and wonder how they can ever face sorting it out and continuing to live or work there.  Yes it is a pretty and character filled place but I would just need to walk away.  I realise of course that financially this cannot always be the case.  It just shows that we humans are a resilient bunch and will just get on with it no matter what.  It makes me proud to be British.

All for now.  Keep away from bugs!  Keep safe.

Warm love to all and thank you for those that comment, it means a lot.  

Carole xxx