Monday, 3 August 2020

NEVER BEEN SO PLEASED TO BE ADMITTED TO HOSPITAL.

Here I am back in the same ward I began my ph journey ten years ago.  My bed is in the same corner as it was then.  The difference is that COVID has changed so much of how things work here.


I was admitted to hospital on Friday 24th July after battling for quite a while with shortage of breath, low oxygen, palpitations and the fattest legs ever -  so  fat I could barely get in and out of bed due to fluid build up. No amount if upping my water tablets helped with my fat legs.   The selexipag that we had thought would help so much seems to have dropped my blood pressure so low that it was dangerous.  This meant that trying to move was not good as I felt dizzy and kept almost falling over, never a good thing.


I spent more and more time in bed, something I hate and my consultants rang daily for updates.  I even said to Colin that I didn’t know if I could fight anymore as I was not sure I would ever feel any better.  A life feeling as I did just would not be a life worth living so terrible had I felt. Fortunately at last I heard from my consultant the words I wanted to hear,  “ we will admit you tomorrow,  I was so relieved as by that time I felt life was unbearable. 


Bags packed on the Thursday it was also a day to say goodbye to our darling Izzy after she had stayed with us for 124 days!  Granddad had dutifully been her teacher, plaything, carer and best friend.  Our house would no more be strewn with dolls, brushes, clothes etc.  We could get back to normality as they were heading off for Spain!  It was so sad to see her go but she needed to be back where she belonged.  Our son arrived from Leeds to live in their house and take care of animals etc.  Life would be changing.


Izzy was in two minds about how she felt.  Clearly she wanted cuddles etc from her family next door but she had been having so much attention 24/7 and as she is a granddads girl she knew she would miss him so much.  Her emotions were all over the place, pleased to think she could go home and dreading not being able to come back but there was another pull for her to go home - they were going on holiday!   Exciting times and then the joy of having a brand new baby girl  cousin she could cuddle at last!  Going home won out as it had to do.  Granddad took her round with her bags packed.  She promised to FaceTime me daily and she did the first day.  I saw her being able to play with Harry at last.  She said she had missed cuddling him so I think she would have made up for it.  So she was gone and we were bereft!  Colin cleaned and tidied her room and wailed that it was just a guest room now, no clothes strewn around, no dirty washing in the bin, it was sad but it was how it had to be and now we could get on with dealing with me and this pah thing!  


She had been a great help to me with my scooter.  I wanted to walk but could not cope with hills and tired very quickly. We agreed that I would go up the hills on the scooter and then I would walk whilst she took over.  It worked very well and she is astute enough to see when I am tired.  On the way back she said that she felt it would be better for me to get back on the scooter to rest, how right she was as all the above was about to come down on my head.  


Friday we were up very early, I just couldn’t wait to get to hospital and begin to get sorted out.  Colin took me up to the reception of the ward but was allowed no further.  Not even knowing at this time if they would actually keep me in or just check me over he was told to go and wait until tests were carried out.  It didn’t take long checking my blood pressure to see how dangerously low it was and just how bad my water retention was so I was asked to ring him and say he could go home ..... I was in. 


Echo, ECG, Chest X Ray and numerous bloods were all done.  Good news the selexipag which had caused all this does not appear to have damaged my heart more than it was in January,  This was an enormous relief.  Now it was time to come off the drug that helps so many but for me was raising my resting heart rate, lowering my stats and causing me so much damage.  I needed to get off it swiftly but in a safe environment and here I am, in the right place at the right time. 


I was admitted to a side room to begin with until my COVID tests came back clear.  All staff wear face masks and often visors too,  I was safe and I felt reassured.  Here I remained for two days until I was able to join the ward where I began this pah journey.  ( the COVID test is not bad at all so if you need one do not fear).


So here I am, sitting in bed with a cannula in my arm which gets frusomide injected in twice daily and at last I can see an improvement.  My thighs which were huge have now at last returned to normal and my ankles, though still not right are beginning to look more normal.  


Sadly my blood pressure still remains dangerously low and so today I was told to drop my selexipag to just 200 mgs twice daily.  Clearly I will not be allowed home until they see a pattern of a good blood pressure.  All is well though.  I love the staff and there are two super ladies in here so we can have a natter.  Now my concern is for my daughter and family who are in Spain!


No sooner had they left the UK than they closed the air bridge!  Fortunately they are in a part of Spain that does not have the spikes in COVID but my concern is the airports and plane.  Anyway there is nothing they can do so they intend to take good care and enjoy themselves and worry about coming home in two weeks time.  With my son being at theirs too they have no concerns about the animals as they would had they been in a cattery etc.  I have not heard from them since their arrival so hope to hear soon.


Surprisingly I am sleeping quite well which is a blessing as no tv, we cannot go into the day room, we cannot associate with anyone other than the ones in this room. As I am rubbish with technology I have no means of watching things on my iPad as some have. But the day passes steadily away and all is well.  


I have to tether my iPad to my phone and am worried about running out of data so though I do read your messages I am answering them all here at once.  


(Update on this!  I have just learnt that we have guest WiFi!  Ten years ago there was none and I assumed things had not moved on though this morning I find we now have it)   Only been here six days to learn this!  


I am so moved by all the lovely support you have given me, it really touches me and makes me feel I am not alone going through this journey.  I have no idea yet when I can go home but I want things to be right when I do so would rather stay until all is well.


We are about to come out of lockdown.  Let’s hope none of us now loses the battle we have fought so hard due to corona virus.  I am reading how many refuse to wear masks which will put us in danger.   I feel sure we will be doing all in our power to continue to remain safe and that we ride the next spike which will hit us as sure as eggs are eggs.  


Update


Well another day another dollar so they say.  Here I am now on day 6 of being admitted.  I thought I had finished my blog but it seems there is still more.  I am now OFF selexipag totally and they have doubled my frusomide to try to remove all the water ( most is gone) but STILL my blood pressure is low.  It may well be that this will increase once my legs are completely good and I am come off the frusomide.  We shall see.  I am safe though and they want to check more blood pressures rising and sitting.


One odd thing today when they were taking my bloods. All was going well for the first three vials and then my body refused to give more.  It was so strange and never happened to me before,  The phlebotomist changed the needle twice and still nothing,  All we could do was to leave it for a while and try later.  After my shower all was well, weird.  This has never happened to me before so I hope my veins are not complaining! 


Day 7 same again with blood, my body appears to be in lockdown not wanting to give it.  They have added potassium to my meds as I am low on it,  Nothing else to report.  Onwards and upwards.  


Saturday 1st August


I think I will be able to go home.  Yesterday was a bad day but I think it was the heat.  Stats once again low and water retention so I was gutted.  Woke to a new day today and I feel way better and the blood pressure is up.  


I have been walking up and down the corridors to get my body moving. ( remembering my Pilates instructors mantra “ shoulders back and down and tummy in core engaged “) Yesterday it was so hard to do but today I see much improvement.  I am now waiting for the doctor but pretty sure it will be time to say adieu to this lovely ward and a huge thank you and then go home to my lovely husband and garden.  


We had a lovely girl in here who is facing the prospect of a transplant,  very scary of course.  I asked our own transplant girl Catherine Makin if she would talk to her as she is well placed to do so.  Catherine was pleased to help ( she had just finished her Jo Wicks exercises and was about to out for a walk.  She said how wonderful it was to be able to breath at last.  I think these two will get along nicely and Catherine will be honest and supportive.  Just what is needed when facing such a huge step.  So my stay in the hospital may just have helped somebody in great need by putting them both in touch with each other.  


Yes!!!,  


I was told I can go home if I wish or stay over the weekend and go home on Monday just to make sure I feel ok.  I decided to go home and here I am.  My legs are beginning to swell again which is worrying but I will see how I go on.  Lovely to be in my own home though despite being so well looked after in the hospital.  Let’s just hope I did not make the wrong decision,,


So I will end this blog now and hope that the next one is brighter.



Warm love to all


Carole xxx


Saturday, 4 July 2020

IT’S ALL GETTING TOO MUCH.

Lockdown is over for many people but for the extremely vulnerable it continues,  Do I want to go back to life before lockdown whilst COVID is still around .......... no I do not so I will continue to isolate but I must confess to it getting on my nerves now,  I am so hoping for a vaccine but fear it is a long way coming yet,  The novelty of not having to bother to change out of pyjamas has gone,  I like to get dressed daily now  My hair is getting on my nerves and despite having jobs to do in the garden and house I long to be able to meet up with other people to enjoy meals out, coffees etc.  

Sadly too my health has deteriorated these last few weeks and this too has me feeling very frustrated!!!!   The selexipag that I was so looking forward to helping my health has turned on me and caused issues which now must be resolved quickly before my health worsens,  Fortunately as I have the machine that reads the chip in my pulmonary artery this has come up trumps and with the doctors able to analyse the readings we just may be able to sort this out sooner rather than later.  We are blessed with the medical team that keep in touch and write copious notes and compare etc to see where the help I so obviously need can come from.  A meeting this afternoon has hopefully come up with the means to help me feel better.

The issue is that though I got up to 1600 mgs twice daily of selexipag quite easily with just a few issues, the worse being the sickness and nose bleeds that were all encompassing  as I was getting  to the top dose, my blood pressure dropped alarmingly.  76 over 54 is way too low and so it causes breathlessness and fuzzy head etc.  This meant I was scared to do much as the fear of falling onto hard porcelain floors was great. Trying to walk became totally out of the question so once more my trusty mobility scooter took over from my legs so that I could at least get out on the trails with Izzy and Colin.  Each night I hoped for a better day to come only to wake up to the same, my  body did not like how much the med was reducing my blood pressure.  Everything has become a struggle and I have become rather lazy and lethargic due to feeling so lousy.   I am hoping that this will change.  We tried changing my dose of frusomide which is 80 mgs to 40 and indeed for a time to none at all but this only resulted in my being more breathless and my belly and ankles swelling up. Another negative is my oxygen dropping dangerously low and my resting heart rate climbing higher day by day,  All these things happen due to very low blood pressure. Life is becoming a nightmare and not something to look forward to.

The meeting today between my doctors has shown that my pressures are no better for taking 1600 mgs twice daily of the drug than 1200.  In other words 1200 is the maximum I need to get the maximum benefit. The extra just causes damage dropping my blood pressure too low.  One issue now is how to get the new dose as I have just been given the single tablet med for the first time!  So frustrating.  My hospital are doing all they can to get me the new meds here ASAP and I  should know tomorrow when that can be. In the meantime it would be dangerous to stop the drug and wait for new measure so there we have it,  I pray when I get my new dose things improve.  Time will tell.  So those on this drug strive so hard to get to 1600 mgs twice daily and for some it could be very damaging.  This comes as no surprise as when I was on the iloprost pump we were told there was no dose the same for everyone as weight, height etc had a bearing on what your body needed.  The reassuring thing for me now is that it will be fine for me to drop to 1200 mgs twice daily and hopefully will help my falling blood pressure.  We shall see. 

104 days and counting 

We have had our darling Izzy for 104 days, keeping her safe and enabling her parents to work.  Of course we love her to bits but must confess to looking forward to having time out now!  There is a reason childbearing age is where it is,  Colin does a great job teaching her lessons etc but is longing for time out on his long bike rides where he sees nobody, his thoughts all his own.  Now he constantly has a nine year old draped around his neck or her never ending talking!    It is how it has to be though but now in three weeks this will come to an end.  Our  son is moving into Izzys house next door and will take over for a week until both parents begin their holidays.  Of course we will miss her like crazy, her smile, her hugs and cuddles, her laughter bouncing off the walls but it will be the right thing to do for all of us.  On the plus side Izzy is at an age where she will always remember COVID and moving in with us,  I remember before her birth when I just wanted her to remember me and how much I loved her,  Through COVID we have had time together that would never have been in the “ normal world “ so I am trying to see a positive in this awful time we have all lived through and continue to live through.  I just want normality to return now though, not just for us but worldwide.  

Oh and joy of joys I have my colonoscopy on 28 th July to look forward to. I hope they have plenty of PPE  in place, very scary right now.  

Holidays that were planned have gone by as nobody can go anywhere.  It has been lovely though to see pics of lots of you having camping nights in the gardens, pool times, bbq’s etc.  It seems nothing has been able to dampen the spirits and I am so proud of all for making lockdown as fun as it could possibly be.  

Visit from family

Colins’ son and family came to visit from a distance on Father’s Day.  We spent a lovely hour together though of course no hugs or kisses.   We were telling how Colin made the most wonderful sourdough bread and the process it took to get the starter to perfection.  Our grandson Ben was intrigued so I suggested we gave him half of our starter - the discard -   I also suggested he and his sister make a simple soda bread.  They went away excited to try both, along with some frozen stewed rhubarb from my freezer ( prepared earlier ready for the arrival of our family from Poole coming to stay with us for a few days). This never happened as lockdown hit us six days later.  We have since been shown pics of the soda bread Ben and Phoebe made ( it looked delicious)  and told how lovely the rhubarb was in a crumble made by the kids.  Still waiting to hear about the sourdough and hoping it is as much a success for them as it is for us.  

We also had a visit from my daughter and son in law - they live next door - with a case of beer and many goodies from Hotel Chocolate for Colin, he did very well on Father’s Day.  It still seems alien to see family and not be able to get close, to talk from a socially acceptable distance but we all understand how necessary it is and must be. 


Colin and Izzy are going away for a few days to a farm owned by a friend where they can totally isolate but Izzy can ride her bike along the thicketed walkways, enjoy scooter rides and walks away from anyone.  She is not the most competent of bike riders so I hope she will come home feeling more at ease on it.  

She is doing a concert at the weekend for her friends on her piano, social distancing of course and we have asked her to practice but sadly all I have heard so far is her laughing and talking to her friends on the computer.  

I have taken to enjoying a drink or two a week of rhubarb gin and fever tree tonic.  Never more than two in around eight days but over ice it is a very nice drink.  I first tried this when away with friend in Bridlington in our motor homes,  As somebody who never really likes alcohol it was very refreshing and now I have half a bottle in my cupboard and a new one waiting to be opened.  Now when we next have our next ph conference, if it ever happens, I know my drink of choice.  

Well nothing else to say as lockdown has robbed us of many things but thankfully we are all safe and sound, we have all enjoyed each other’s company and kept in touch with friends ( though not as often as I should have I must confess). Let’s hope the next time I write a blog it is in happier times. 

It was lovely to get a catch up from Paul and Julia who bought our villa in Javea.  They were enjoying the pool in the heat of 34 degrees!   He wrote a very descriptive post and I could see myself back in my minds eye and see everything he had done or was about to do at the villa.  Here’s hoping one day we will all meet again there but in safety and enjoy all that Javea has to offer.  In the meantime here we are and I thank my blessings that bored I may be but the best thing is we are all safe.

Warm love to all and continue to keep well.

Carole xxxx







Thursday, 7 May 2020

NEW LIFE STYLE AND NEW MEDS IN LOCKDOWN

We are all in the same boat right now in lockdown and its not great.  Most of us will have canceled holidays, weekends away with friends etc. We have cancelled five I believe now so pretty fed up about that but grateful to still be alive. Life is certainly different now and I feel sure I did not appreciate before how good it was to be able to associate with family and friends until it was taken away from me.  I will do my best not to moan much on here!  

My meds have been a pain.  I was just titrating up on the new med selexipag when there was an issue with my getting more delivered so I had to drop down again!  This does not seem an issue but those of you on meds that cause side effects we need to get used to will know the despair I felt  when I had to do that.  After a few days the new ones arrived but all of this took me two weeks out of going up to a higher dose. I am currently on 1000 mugs and hope to increase next Monday.  To make matters even worse I was delivered the wrong drug too from Health care at home.  Not their fault as the script was written by my ph nurse who just wrote sildenafil on the said script.  I cannot take it.  I must always take Viagara as the coating on the generic form does not help me at all.  Idiot me was out of it with the new drug so I took the sildenafil for a couple of days before I realised quite why I was feeling as bad as I was.  Fortunately we have a two week emergency supply of our meds { though not of course yet the selexipag } so I was able to get back to a normality of sorts.  Anyway the good news is that my levels in my lungs have dropped to a great level though with side effects I am yet to feel the benefit but feel sure that will come.

Strange how life in lock down makes us appreciate just the little things.  We do keep ourselves busy.  Izzy has her schoolwork each morning and we are now incorporating in that things like making sour dough starter etc.  Life cannot be all about maths and english so a little baking enters into it from time to time and showing her how easy it is to make homemade lemon curd in the microwave etc. We just might make a cook out of her yet.  

I am busy in the garden growing my veg from scratch.  Seeds have been on our window ledges and each day they have been tended carefully. My cucumber plants are growing a storm and Izzy who loves cucumbers is always checking them out.  I have my tomato plants inside yet too but they will shortly be allowed out when fear of any frost is gone. In my veg patch growing beautifully are my peas, { runner beans will join them shortly when they are big enough from the house} romanesco, lettuce spring onions, beetroot, strawberries, squash {a plant given to me by my ex boss } and radishes.  In a small bed my spuds are growing a storm and I love it when they get just right to collect.  Nothing like pulling a plant and to see all those lovely new spuds waiting for the pot.  I have maris piper and reds growing now.  In the banks of our house we have blueberry bushes planted and this year I can allow them to fruit { last year I had to remove all fruit to allow it more growth}  We have two of these and raspberry canes are growing up our fences so we have utilised all the space we have.  I have even put some peas to grow in front of our sweet peas at it should not impact either of them. Plums are appearing at last on our tree though so tiny.  We have ordered nets to cover them to protect them from the birds and we might even put nets around our apple tree.  We have squirrels all around us so need to protect from them too. 

All the plants from last year have grown big!!!!  I am shifting plants around as some are hiding others now and my lavender did not like its position so that has been moved.  A friend has been kind and gave us a super bush to grow to hide a spot where our digger driver when shifting soil went a bit crazy on the bank and took out too much.  Today he has donated yet another plant that we will put into another bank that should help to cover it.  Eventually I want this particular bank to be an array of colours but all creeping plants that take care of themselves to a degree.

















The beds are growing flowers beautifully and last year I planted tulips of different varieties. They have all grown so well and some even have five to seven heads on one stem.  I was so pleased to see my peony - planted in memory of my mom - has survived and has some lovely buds on it.  The plum tree we have grown is in memory of my elder brother we sadly lost and my dad.  

It's good to talk

I talk to a ph friend Kate Shephard who began the drug around the same time as me so we do keep ourselves up to date with how we are doing and Paula Joanne Smitham sends me regular updates of her titration and life so that is good.  George Gaskin has always been a bit special to me and sometimes when I am down he is my go to person as I know he will understand how I feel from time to time and not judge me. We are all in the same boat.  Yesterday I received another letter from the government telling me what I already know, that we are to stay shielded for another eight weeks.  We know though that until there is a vaccine we are in a dangerous position so must not try to move faster than we are told.  A lovely friend from my Thespian days sadly lost his cousin to this covid disease so it is all around us, so many are touched by this. 

I do try to get exercise and on my goodish days we walk as a family.  I do always take a mask and we go where there are few if any people about.  I did notice today though as I went to pick more rhubarb from my friends garden that there are more cars on he road, almost back to normality and I wonder why as lockdown is still here with us yet.  We make sure the my mobility scooter is always charged.  My trusty steed for my poor days must not be allowed to break down,  it is not redundant.  

On our close there will be a celebration of VE day {social distancing } though I am not quite sure how it will work.  I will not of course attend but it is good to know that through all this we can still bring to mind all that was done for us in the past which was huge, so many sacrificed lives so that we had the freedom we do now.  Then as now we owe so much to so many.  

I had two letters yesterday from a debt collection agency!!!!!!!  I was horrified as I knew I was not responsible for the debt.  It turns out that one day in March a company called Deliveroo  {what on earth is that} delivered a meal costing £84.60.  We of course were not the people it was delivered to and so we were put onto the fraud team.  I hope they find where it was delivered and take the appropriate action,  In the meantime my card has been stopped and they will send me another one.  Thank goodness this was spotted so soon and all monies they say I owe have been deleted.  We never order take aways as we tend to cook all from scratch or go out for a meal, not allowed now of course. 

Saying that about take out we are hoping though to get fish n chips today! This will be a rare treat and Chris is going to go to Catch to collect.  You book a slot, give them your order and go on the day and time and sit in your car.  When your order is ready it is brought out to your car and put in your boot.  When we get it delivered here we will put it immediately in a hot oven to kill any covid that may be lurking and then go and sit in the garden and enjoy!  It's the little things now that bring much pleasure.  Though we have two fabulous lawns Colin has created a super spot outside our back door and it has been flagged with indian stones.  We have a fire here and a bar b que and table and chairs.  Who would have believed so much could be done with our gardens  We are blessed.  So it is here we will enjoy our fish n chips!  No cooking tonight, what a treat.  

It is cleaning day and the house smells wonderful with dettol and bleach, I love these smells.  Our hands, though once so dry with the constant washing are gradually healing.  Of course we wash often but I think our skin is adapting, getting used to the soaps and anti bacteria wipes we are using. Life adjusts to the new normal.

Received a very welcome text and pic today from Paul and Julie.  They bought our villa we had built in Spain and they were the very generous ones who said we can go and stay in the apartment we had built under the house. I loved our apartment and though we rarely stayed in it as we of course lived in the villa I did enjoy the times we did use it.. I just can't wait and along with the pic he sent of what was our pomegranate tree now in bud he brought back the memories of our walks through the woods to the golf course for lunch. I can smell the pine trees now as our villa was built in the woods. These woods hold so many secrets when you find and unlock them  all. They have not found them all out yet so if he still has not when we do manage to go we will take great delight in showing them both. Into the pine woods, down  through the lovely trees, through an almond field and onto the fennel field, over the road and through the vineyard and up through a lovely housing estate and it brings you down to the ponds where the biggest fish ever are!  This is the edge of the golf course and I know I WILL go there again, I just need to have patience.  I do not think we will fly for a while though and will drive down, taking our time and staying in the lovely Parador hotels and vineyards along our way. All things to look forward to.  We were so blessed that they bought our villa. They keep bringing it alive again for us. 

Though we are in lockdown now we have done so much in our lives and we really are blessed so on my bad days  will try to go to that place where I was so happy. Our villa for one. In fact I have many.memories and will try to dwell there when  feel down. We also loved it when we lived in America and we made many friends there. All of us must have many memories we need to unlock now as we are being shielded.  One day we will hopefully be able to run free. Well for my ph brothers and sisters of course run will not be on the cards but get out, drive the car, walk on that beach, take the trails through the wood etc. One day ........... !!!!!!!

For now all take care, let me know how you are doing and please try to write a comment so I know you are doing ok.  

Warm love to you all

Carole xxx


Friday, 27 March 2020

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

Wednesday, 4 March 2020

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




Tuesday, 28 January 2020

CELEBRATING TRANSPLANT TWO YEARS ON - LYZ CLEMENTS

The weekend just gone saw us being able to join Lyz Clements and her husband John and son to celebrate two years post transplant.  Before having pah I never heard much about transplant and never met anyone who had had one.  Oh how times have changed and the word transplant gets bandied around as an every day occurrence. Of course the reality is it is still terribly hard to get a transplant and it is certainly no cure - just a way to hopefully extend life for as long as the organs last  Lungs are the hardest ones to cope with the transplant and so we rejoice whenever we know there has been a successful one carried out. 

Off we went and what a joy it was to see Lyz looking  very smart and a super colour.  It seems to be one of the first things that is noticed after a transplant - how the colour goes to a lovely pink and the lips lose their blue tinge as at last much needed oxygen is delivered to all parts of the body.  We both had lots to talk about and neither of us appeared to run out of steam for asking questions etc.  

John was so lovely and kept making sure Lyz had everything she needed -  drink topped and nice food to eat.  I liked him the second I met him and over the course of the celebration my opinion never changed.  He has taken on the roll of carer so well and must be such a relief to Lyz.  I also met Ryan the son and what a charmer he is.  He will break a few girls hearts in a few years so beware!!  

We also met the family of Lyz and they were so nice and so very welcoming - even though we did hog Lyz for most of the time.  Andy the brother in law talked a lot to Colin about men and their toys and I suspect it will not be long before we are visiting a store to buy a certain one recommended by him. We have enough mens things here but who am I to complain.


Lyz brought in an amazing cake made by her friend with lungs made out of icing as the main decoration.   The cake was a chocolate and orange one and truly yummy.  We bought a piece home for Izzy to try but not seen her yet for her thoughts on it as she took it home to eat.  However chocolate and orange are a great combination so I bet she quickly ate every bit of it.  

Sonia Marshall was there as she knows Lyz well and only lives 15 minutes drive away.  It was really good to catch up with her as she has not been able to attend conferences for the last few times due to oxygen.  I know oxygen is suppled once at the hotel but having to carry so many canisters to do the 7 to 8 hour journey is a nightmare.  Plus of course same needed for journey back. Lyz says the same thing so for them both conferences are a no go though Sonia loved them before going onto oxygen.  Such a shame.  Anthony the son of Sonia was also in attendance and gave me the biggest hug I have had for a long time.  He is all boy for sure and a whirlwind but very good manners.  I asked him if he looked after his mommy and he told me he just wanted to be hugging her all the time and crept into her bed in the night!  He was very impatient for the cake to be cut for sure! 

All too soon we had to return hone as we had the journey back in front of us.  We both agreed that we had a great time and it was so worth the effort  We do hope to catch up again in the not too distant future.  




Catherine Makin

Such a lovely girl as those of you who know her must agree.  Three weeks ago the call came for her to have her transplant.  This went ahead and we are all waiting  to see how things go for her.  She does squeeze the hands of the family when they talk to her and they were hoping to wake her up.  Sadly no recent news and I do not want to nag the family but of course we have all sent the best wishes for her a speedy recovery.  She is one the the nicest people I have met through ph and her family are so close and tight they will all be encouraging her all the way.  So are we Catherine so come on girl - you can do this.  

Meds and away days

As I will begin my selexipag in March we do wonder just what to do with regard to putting life on hold then we decided no - we will carry on as normal.  Of course this may well prove to be impossible but until I get on it and try to cope with the side effects { of which I know so well having previously had the infused form of it } we just need to keep booking nice things to do.   So we have got a few things sorted of which we hope we do not have to cancel.  

One of them is an away weekend with all the family in a superb country house in the Lakes.  It was a struggle to get enough rooms at the same time but ater talking to the manager at this one he was very nice and sorted it out for us.  Once again a long walk up a huge hill is in order { I do believe Scafell Pike} for those up to doing it which will be all but me.  There is lots to do in the area so I will be most suited and if I am not feeling the best I shall go down to one of the lounges  and sit in front of the fire with a newspaper. We are all excited to do this as it could well be the last time we get a chance as part of our family will be emigrating at the end of the summer.  They will be so missed by us all but of course this is what what they want and we will wish them well on their journey to their new lives halfway around the world from us.  

The house gets superb ratings and is 4 star but we have decided to try it out too before we all go so are going to book a couple of nights away before then.  On arrival we are given a cream tea so we will check out all is in order!  We are waiting to see about dates as our friends are hoping to join us too, this time none of us are taking children!! We always go away with them once a year and  take some of our grandchildren. This treat is for us - no kids allowed!  We will however be taking them sway shortly after so they will not be missing out. 

On talking about short breaks with more friends it transpired they too want to visit Krakow  ( there are different ways to spell it but we chose this one as the correct Polish one.  It is pronounced Krakoof which surprised us. It is 75 years since the liberation of those in these dreadful camps through world war two we want to pay homage to all who lost their lives in such a dreadful way. We have visited one camp before and I know I shed so many tears and I know I will again. So that is three things on the agenda plus the one away with the troops in our motor home. I just hope that the side effects are tolerable.  

Friends of ours are due to come and stay for a few days, one of who is already taking the drug so it will be interesting  to talk to her and see how she goes on.  Some of you will know her - Paula Joanne Smitham and her hubby Neil. We are already making plans here as to where to take them if all is well with both of us suffering with pah.  I know she wants to go to visit Shibden Hall, one time home of Gentleman Jack so of course that is firmly on the cards.  As for the rest we will see how we go.  

Funny

Colin was having a few days away in the motor home and decided his hair needed just a smidgen taking off before he left.  Calmly he got out his razor and read the setting and proceeded to take a huge swathe out of his hair.  I was looking on and saw what was happening just a second before he did as he was shielded by his hand.  He had taken it right down to the wire!  He was bald!  He looked at me with horror in his eyes and panic too. Of course there was nothing for it but to take it right down all over.  He had read 1 as a 5, he does need new glasses and this has forced his hand so they are due on Monday next week. He has been wearing a cap all week but he is fortunate that the weather is on his side.  I did of course shoot next door to tell the family and when Colin arrived a few minutes later they were busting for him to take his hat off.   He is fortunate that it does actually suit him and has decided that when it grows back he will keep it not so short but at number 3.  I have been taking the micky a few times though telling him he did not need shampoo etc.  He was not amused.  

So another blog and I thank you for reading it.  Comments are always welcome. I do wish you all the best of health and also hope the weather is being quite kind to you.  We had snow here today but it was just a sprinkle though we do see lots on the hills around us,  

Warm love to you all

Carole xxx