Saturday, 1 May 2021


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.


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

Monday, 12 April 2021



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!

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. 


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. 


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.  


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.


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.  


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.  



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



Monday, 1 March 2021


At last we have a date!  To be honest as a clinically extremely vulnerable person I admit I will be very nervous but we have to get on with our lives.  We have had 12 months up to press with three more to go  - who could ever have known when it all began it would last so long,  With a life limiting illness we could have thought  it a waste of our  lives but we didn’t.  It gave us a chance to catch up with jobs, speak to friends on the telephone, try lots of different recipes, learn to grow  fruit and veg in our newish garden and not to feel guilty for wearing lots of pyjamas!  Life will change again and hopefully if we are all careful, taking precautions when outside we just might come out of this on top.  Thank  goodness for the vaccines.  

Talking about the said jabs at the phlebotomy department today the nurse using the vacuum to take my full blood tests said she had forgotten how to do them as she had been away for three weeks,  I asked holiday or COVID and she told me that her husband, son and daughter and grandson all living in the same house came down with COVID but she did not.  Five weeks ago she was given her vaccine ( she had the Pfizer but I think they are both great ) and she did not get COVID.  She put it down to her having had the vaccine and the family not and I agree.  I was so pleased to hear this and it gave me so much hope for the future, not just for me personally but for mankind the world over.  We cannot be free of the pandemic until the world has the vaccine with regular top ups as with the flu jab.  As a country we are doing well in the injection take ups but we are just a small part of this horror and we need the small countries as well as large ones having the same opportunities as us to get theirs done,  I hope humanity pulls it socks up and makes sure injections are available for everyone whether a rich or a poor country. 

We both had our first injection at our local hospital and to be honest it was so smooth and easy.  We were met just outside the door of the venue and given forms to fill in and then very quickly shown into  our own little booth to have our jabs.  We were both given the Pfizer one and after a fifteen minute wait afterwards we left to go on a walk.  We had no side effects, not even a sore arm and we felt so much relief that we have begun the process to hopefully be safe.  I pray it goes well for everyone else and that we can begin to feel peace again.  

I woke up in the middle of the night about three days after having my jab.  I was clearly coming  down with a cold and in the morning I could not taste or smell.  Colin joked I had COVID though it’s not a joke COVID is it,  but I was not alarmed as I have done all in my power to stay safe and a cold DOES stop sense of taste and smell.  Three days later all ok and just a runny nose now and hopefully my immune system is working to fight the baddies now. 

Pushing back the heart rate 

Since I had my ferrinject infusion I have been able to once again take up walking, a passion of mine.  I hate it when I can’t get out and about walking along the tow paths of the canal or the river.    Because of my chips inserted into my body monitoring just about everything I do for a study I have been so pleased but also shocked as to how much benefit I see after a walk.  It wasn’t so long ago that my heart rate seemed to be in either fat burn zone or so often cardio even when doing nothing.  I was told how important it was to try to exercise five times a week.  When checking all my stats I see my heart rate has dropped thank goodness and mostly my heart rate shows a lot of more normal readings, and quite a lot of fat burn zone but very little cardio,  I know we need cardio too but I was scared when mine was in it just heading to the loo.  Now it goes into it when I am walking up a hill.  Yes I do hills again!  I won’t kid you that they are enormous ones cos they are not but before we would not go where I would have to walk up one, now I actually like to push myself so I can read my stats afterwards.  The power of walking!  As my doctor said it is like another medicine for us with ph.  So I pack a couple of small oranges and a few almonds and off I go. This  morning my Fitbit did not show my heart beat went above normal at all in my sleep when it always used to, it just stayed in the green so I am pleased.  

I have been watching a baby cormorant on the river.  When we first saw it it truly was a butter ball round squat and fat so it actually looked like a penguin sitting in a branch.  We saw it’s mother taking off after feeding it and we have not seen her again but we have seen a change in her baby.  Instead of  the butterball we now see a sleek bird developing daily, how quickly it changes from day to day.  A couple of times we did not see it and thought it had flown away to pastures new but no ..... going the following day it would be back just sitting on its own perch in the middle of the river.  I guess it won’t be long before it leaves us but it has been lovely to feel the anticipation walking along the river of wondering if it would still be there. 


Now before you dog owners switch off please read what I have to say.  I am allergic to dogs but appreciate the love that people have for them.  My daughter had a beautiful dog but I could not be around him without my chest tightening up.  Walking on the tow path of the canals and the river I come across many dogs and smile at them as they walk by.  I have admired them and tell their owners what beautiful dogs they have and I mean it.  Most people are respectful of others walking too and if their dog is boisterous they keep them on a lead, most do not need to.  Yesterday was not a good day for me walking due to an irresponsible dog owner.  Walking on the riverside I saw two women walking towards me with a big black dog walking in front of them.  They were too busy talking to each other to bother with the dog.  Seeing me he ran towards me and was jumping up and down on me.  I was scared as I had been bitten by a dog before.  I stood still and shouted NO NO NO but the dog ignored my calls and carried on.  I could have been pushed over very easily. The two women walking did not even try to stop the dog, did not call it back at all.  One just told me if I did not like dogs I should stay away from canals and river beds. I was flabbergasted and said actually I am a human being and this is exactly where I need to walk.  She would have had me walk on the roads and breath in all the pollution from the cars.  I was so upset by this encounter and cut my walk short.  Today walking my same route I actually carried a stick with me in the hope that if they were walking with their dog and saw me they might actually decide to bother with the dog and call it back thinking I might hit the dog with the stick,  The stick was actually for them!!!  I know of people’s love of their animals but this does not mean they should be allowed to harm anybody. Sadly I did not see them but I was prepared to show them the stick and tell them that I had done research and that if I felt threatened  by a dog  I could defend myself.  I doubt I could have done it but it may have made them more wary and they might take more notice of their dog when outside.  As Colin said it is not the dogs at fault but irresponsible dog owners who seem to think that as they love their dogs and are happy to have muddy paws all over their coats and faces licked by the same mouth that had just licked it’s own bum we all feel the same.  Well I don’t.  I feel sure that most dog lovers on here are responsible when out with their dogs,  sadly not everyone is.  

Stepping out

I have been doing pretty well doing anything from 15000 steps up to 20000 steps a day.  I am so chuffed and when my P. A.I  part of my fitness plan tells me I have done well and rest for two days as I deserve it I am ready to do it!  Sometimes  it is hard getting going but I think of the benefits and just go for it.  It makes it easier to do it as I am out anyway getting Izzy to school so the battle is halfway done, getting up and dressed and out by 8.30. 

Loss of a friend. 

Sadly we lost a friend recently.  She was the one who comforted me in Spain when I was given my diagnosis.  It was hard not being able to go and visit when she was near the end and I do know friends that ignored the rules and did.  I can’t say I blame them but knowing that this particular friend saw quite a lot of people towards the end it was just too risky for me to go and anyway we have abided by the rules for so long and so been protected we just could not risk it.  I feel bad for her though that the last year of her life was one living under such restrictions.  So very sad.  Towards the end she was in such pain and the end came when the carers turned her and broke her leg,  I think it was full of bone cancer.  Throughout this Covid we will likely all have lost somebody and she is the first and the last I will mention but I am very upset I could not give her the comfort she gave me except for on the phone.  May she rest in peace. 

Back to the garden

A friend bought us new plants for our garden so in the next day or two I will go out and plant them ready for a nice display later in the year.  Colin is going to dig over the veg patches though I have asked him not to dig in any fresh compost yet as we are not ready for planting veg out this year so early.  I am not even sure what veg I want to plant. The beans were too prolific last year, we ate them at every meal and the veg that is a cross between cauliflower and broccoli  ( romenesco) just took over we were giving it away to everybody.  I think we will do different ones this year.  We did add another apple tree and a conference pear tree last year so it will be interesting to see how well they do this year.  The garden kept us sane last year throughout lockdown but we need to take care once we are out of it that the garden does not take over our lives, we have a life outside of these walls and gardens and at last we can join it.  I will still enjoy watching things grow though and seeing how wonderful nature is.  Our crocuses are blooming in the garden and the tulips growing nicely.  This does mean though that there will be lots of lawn to be cut!  Ah well we can’t have it all to easy.  

Boring jobs

Today I was exhausted after my walk so after a simple meal of avocado prawns and salad was an easy and not taxing lunch. I decided to rest on the bed.  It didn’t take long before I was bored so I decided to pull the drawers out of beside cabinets and sort everything out.  After that it was onto my medicines, there are so many in so many different boxes so I checked everything and put in a pile anything that I was not able to take.  Our meds do change often with pah and sometimes some need to be returned to the chemist.   On then to our cutlery drawer which is a huge one and I took everything out to clean it and put it back.  There was hardly any need as only saw two crumbs but I know it is all done and disinfected now.  Colin then rang to say he had a flat tyre and was taking it to Kwik fit to get a speedy repair as Izzy needed collecting from school.  Thank goodness I was not driving it when it happened.  I hate anything to do with cars except for driving them.  


She has got another rabbit.  Sadly one died last year leaving Bluebell on her own.  Rabbits are social creatures so they just bought another one they have named Copper.  It is a harlequin rabbit and quite cute,  So far though they cannot be put together as the big rabbit would quite likely kill the small one judging by what we see when they try.  Hopefully in time they will blend together.  We shall see.  

She told me that they lost their internet for three hours yesterday and her parents were trying to sort it out so she did all the housework!  When she told me what she had done I was flabbergasted as it was so much, we reckon if we asked her mom it would not be quite the same tale!  Izzy tends to exaggerate somewhat. 


Escape to the chateau.  What an amazing series.  To see two people turn around this huge chateau that was derelict has been a joy to see,  In fact it was watching this series that prompted me to buy wallpaper with birds on as the french had on their chateau walls.  So pretty.  Gradually they did manage to get some jobs done by some tradesmen but oh my goodness the work. It makes us tired to just see all they have done and still have to do.  They have made a truly marvellous job of it.  Now run as an events venue a friend of ours got married here and said it was absolutely magnificent.  


No not for us yet as such.  Certainly no going abroad but we do look forward to heading off in the motor home as we can be totally on our own.  We don’t need to use facilities or eat out if we are nervous. Danielle and Chris are looking to hire a motor home for two weeks and are happy for us to join them.  We won’t get in their hair but it will be nice to see them from time to time.  Let’s hope we can manage to get two bookings together later in the year. 

Right, time for bed.  Walking and cleaning day tomorrow so need my beauty sleep for sure,  Hopefully we will soon be able to have our cleaner back and what a red letter day that will be.  Take care everyone and thank you for reading.

Warm love

Carole xxx

Walk finished and I did 20000 steps which is 8.34 miles or 13.45 kilometres. So thrilled.

( since writing this and not being published I did manage to do some gardening and also plant out 20 new ones.  Left me totally drained with only 5300 steps as not a walking day.  Don’t think digging and bending over are good for me at all.  

Friday, 29 January 2021

HERE IS MY LOCKDOWN DAY - how does it compare to yours?

Whilst we are all in the same boat in most respects I do appreciate we have different things going on.  Some of us have children  living with us, maybe parents etc.  I know some live on their own and many have wives, husbands or partners with them. I know some work either from home or out  in the  real world which also makes a difference to how our days pan out.   This of course means lockdown does differ for us in many respects despite all being tied to restrictions.  I decided to write what happens here in lockdown on a typical day.  Yes pretty boring but how does it compare to yours,  

Wake up time 4.45 panicking as my breath had left my body never to return I feared.  I tried to draw more air in but my throat was closed.  In time, actually only seconds though it felt longer I snatched my glass of water from the bedside table and drank,  My throat opened to receive it so I think  the issue was more to do with dehydration rather than my lungs, totally dry throat, I often wake in the night parched despite drinking a glass of water before bed, sometimes two.  I had read somewhere that those with heart issues should always drink a glass of water before bed so i have  since complied with this. (maybe I get up  in my sleep and do mad exercises as when I check out my resting heart rate I am surprised to see that when I am sleeping it is generally in the fat burn zone so I get dehydrated ! )  So there it is, I can’t possibly put weight on while burning up the calories) No point in attempting to go back to sleep so I turned on the tv and watched a programme about how our body works.  What a fascinating programme it was and so interesting to see how our white cells were gobbling up the  baddies that had invaded our system .  Just wish they could gobble up all the stuff making our lungs getting narrower and narrower!  Roll on stem cell in a few years time which could cure pah.   

6.00 and time for my meds.  Whilst it seems a crazy time it works for me as I take water tablets along with the numerous others to keep me alive.  I want my water meds to work before school time and our taxi service for Izzy.  It was then time for the news which is not pleasing right now as the EU want our supply of vaccines despite them saying they were only 8 percent effective and also despite them waiting three months after us to order them ( waiting to see if we grew horns or died of the vaccine). I am not getting into politics here but I was sickened to see the whole sorry mess.  I stayed in bed a while and took the readings from my machines for the studies I am currently on.  The Denervation study will be ending for me in February which I am gutted about though I have been told I can then download an app and read my own pressures.  Then there was nothing for it but to get up, washed and dressed ready to begin another day.  Oh whoopee do!   Oh and nothing yet about my vaccine but not getting down about it. It will happen when it happens.  

Izzy came round to the car at 8.30 put some hand sanitizer on and wearing her mask got into her seat ready for off.  We were waiting with our masks on too and the windows wound down as advised by the government.  A breezy ride to her school to drop her off and we then went to the canal to begin our exercise for the day.  Fortunately the canal was quiet and we managed a nice walk of around 3.5 miles - included in that was a six minutes walk test as part of the study.  Some of this walk took in the river and we were pleased to see that it was not too high after all the rain we had.  Lots of horses had clearly been walking down by the river as far as the levy where they would have gone over the cricket pitch.  Their hoof prints were deep in the mud, a nice clean up job needed on these when they arrived back at the stables.  After our walk it was home for breakfast.  

The day before Izzy had told us that her school pudding was supposed to be a blueberry muffin but there were no blueberries in at all and these were her favourite ones.  I promised her I would make her some so after breakfast I did just that.  Muffins in the oven loaded with fruit but little sugar ( I do my own version of a muffin more healthy using oil, milk and little sugar and fooling the brain to think they have loads of the latter I sprinkle  sugar on top of the uncooked muffin ergo every bite has the sugary topping). I then decided to make a broccoli and Stilton soup as our Sainsbury order was being delivered that evening so I used up the veg I had in the drawer of the fridge. Colin tells me has put put two bunches of my favourite flowers on the list, tulips,  I can’t wait to see them. Deciding to rest awhile I turned towards the door and felt the familiar pop of my nose deciding to bleed.  Fortunately this  was not a bad bleed and was quickly stopped.  I get a lot so have learnt to just accept these bleeds as part of my condition and the meds I take. 

Resting in bed I caught up with some admin of the pah group I am part of and also read Facebook messages etc,  After a short rest I returned to the kitchen and enjoyed the soup and a gorgeous muffin.  Colin was talking on the phone to my son about various things so I headed into the lounge to do exercises for my bad back.  They are good but I do struggle to get off the floor afterwards.  I then caught up with the journal I write for Izzy as it was long overdue and made pizza dough for dinner,  We had decided we wanted something simple and tasty and as this is so easy and my son loves them we agreed that Colin would put the toppings on when the time was right and make a salad. Though my son does not live with us he does live next door with my daughter and her family whilst COVID is going on.  I always include him in our evening meal.  He comes to the utility room door and takes his tray of food back to his room and eats.  We can’t have him eat with us due to COVID and as my daughter and son in law are first line and so at any time could have COVID he does not mix with them either.  It works for us all.  

A couple of jobs needed doing so I pulled out all the things under the sink cupboard.  I took up the old lining paper and made it all fresh with new. I say it needed doing but it didn’t really I just needed to find something to do.  Colin and I sorted out the cupboard that houses all our Klik containers and disposable ones too making a good job and more room to see what we have. 

Time to collect Izzy from school so suitably masked off we went.  We were a few minutes early so just sat and caught up with the news on our phones.  Then came the kicks in my lung.  I hate these.  They began around a year ago when walking in Coniston.  As we were walking along a path back to our motor home I felt a huge pain in my right lung like I had been kicked.  I turned around to see who had kicked me and of course nobody was there.  A few seconds later the kick like pain came again and a few seconds later a third time,  the pain was so hard and unexpected I shouted out with the shock of it.  Ever since maybe once every three weeks I suffer these.  Never found out why or what they mean but believe me they HURT.  Does anyone else with ipah suffer these, would be interested to see.  

Izzy delivered safely home and with a box of muffins so a happy girl I finished her journal and went for another lie down.  Yes I have quite a few of these.  Not sure what is happening with me at the moment but my chest has been feeling very constricted, like a very tight  band has been placed around my upper chest ( I suppose something like in the old days when they strapped up those who had broken ribs) and this makes my breathing more difficult.  My heart feels heavy too, it’s difficult to describe exactly but feel sure lots of you will know.  Because of this I do rest rather a lot.  

So it was that I was resting while Colin was putting delicious toppings on the pizzas.  Passata sauce with herbs, cheddar and mozzarella cheese, jalapeƱos, black olives and pepperoni, fabulous combination it was too.  Just as he shouted they were two minutes of coming out of the oven I asked him if he would squeeze half a lemon over my salad,  shock horror he had forgotten the salad so this had to quickly be rectified, can’t have pizza without salad in our house.  There it was, easy dinner sorted.  Not our usual kind of dinner but it was enjoyed by us all anyway.  

I was exhausted and stayed in bed after dinner and Colin came to sit with me whilst we caught up with an episode of Escape to the chateau ( the work all these owners do to their derelict run down chateaus is remarkable and they are turned into magnificent homes that generate money by holding functions etc.). It is tiring to watch them.  Then an episode of Ben Fogle and his real life journeys to see how some people opt out of traditional life and how they live,  Quite mind boggling some of them.  

and so to bed ............

Settled for the night with my drinks of  water I wait to take my evening meds. I always hope for a good night but these rarely happen as pain keeps me awake or wakes me up way too early but waking up is a bonus, the opposite would be to NOT waking up and I am not ready for that yet. 

So right now life is pretty much the same as for all in the UK and indeed worldwide as life is not as it should be,  We should be out enjoying seeing friends and family, having pleasant meals out in nice restaurants or holidaying in lovely places.  Alas not to be but we hope if we stick to the rules, obey restrictions and try to keep ourselves as safe as we can there will come and end to all off this, 

In the meantime our hearts go out to those who have not made it through due to COVID or other illnesses,  Many families are devastated right now and I am just so thankful that despite difficulties, illnesses  etc we are still here to tell the tale, still here to bake the muffins and clean out the cupboards.  

Colin has just begun the process so he can bake sourdough for tomorrows lunch and this is always a treat and so delicious,  So I will leave you now and hope your day is a happy one.  

Tons of love to you all. 

Carole xx

Tuesday, 19 January 2021


I have just watched a programme that has so sickened me.  It was about a woman named Nicole who lied and cheated her family, friends and strangers out of thousands of pounds.  How she did this was to set up a Go Fund Me Page and said she was very poorly with a rare form of cancer and needed treatment not available in this country,  She was so convincing that when the fraud team arrived at her parents house her parents and her son were so sure she was seriously ill,  they really believed that she was at deaths door and even the fraud team wondered if they had indeed got it wrong. She had hurt her family in her greed to get money. It made me so angry that somebody could be so greedy, uncaring of the pain to her family and of the many that sent her money.  Fortunately she was found guilty of fraud but what a sickening story.  When she told her family she was dying of this cancer she said the only help available to her was at a clinic in Spain.  The Go Fund me page was set up  and lovely caring people ( mostly strangers ) sent her money to help her to try to get a cure . Where did the money  go.  Well she was a gambler and it went on her addiction plus posh holidays abroad, fine clothes etc.  

As I am a person with a life shortening illness and being so well treated by the NHS here in the UK I was horrified to see that she even actually used treatment she had in our hospitals to bait her trap.  She had been in hospital to have a gall bladder operation and pictures were taken of her looking poorly in her hospital bed.  She used these pictures to say she was in Spain where she had to go for this special treatment costing around ten to twelve thousand pounds a month.  She needed months and months of treatment so clearly wanted the kind and caring people to pay for it.  We are a very caring nation and the money flooded in to her page. Fortunately there are fraud teams out there whose roll is to investigate these go fund me pages.  Many are found to be fraudulent but sadly also many go unnoticed whilst  the greedy people just rake in the money. 

This programme made me feel crazy and angry.  It is people like these that stop the ones really in need of help on go fund me pages to be taken seriously.  I for one rarely give to go fund me ones.  Unless I know it is an honest person I would not give as trying to find the truth is beyond my capabilities.  This is such a shame as the innocent are being punished by the greedy and guilty ones. Not sure of her punishment but she sure would have lost her friends who gave to her page. Her son and parents will also look at her differently from now on.  

It’s not been a fun year has it.  

As we moved out of 2020 and into 2021 I feel sure we all are all hoping for a better year - an end to this constant worry of COVID - a disease that seems not content to killing and isolating many but that also appears to keep changing its patterns and adding new strains into the mix.  It has and still is a terrible time for us all to endure, young and old alike.  All we can do now is hope that we are still here to get to the end of this terrible disease and begin to live a full life again.  Sadly it seems we are quite a way off this yet but each and every day brings us closer and closer to this goal.

The government are discussing whether or not  police, teachers and shop workers, army etc should get their vaccines sooner than was first discussed.  For me this is a no brainier.  These people are in the front line too, seeing so many children or customers  or heads of departments etc.  Of course NHS had to be first without a doubt but without shops, or certainly food shopping where the heck would we be,  Teachers too.  There are still children that need to attend school as parents working on the front line so let’s give them their vaccinations,  I am shielding so would happily give mine to any one of the above to go before me in the queue.  Anybody whose work brings them into contact daily with lots of people are a threat to passing on the virus. So let’s get police, teachers and those working in shops or with lots of people vaccinated so they are safe and unlikely to infect those not vaccinated. I just can’t wait to see and end to all of this.

On the COVID front I am happy to see that my friends George and Nicola Gaskin and their daughter are all recovered from their COVID.  I was very worried about them all but in particular for George who is very vulnerable indeed.  Each day I would look for updates and be fearful when there were none ( though I did get updates sometimes from them by messenger) but always dreaded worse news.  So thankful they beat this and hope they soon get their strength back. George is back joking on Facebook so it’s looking good. 


How lovely to see the snow last week but my the disruption it caused.  My daughter was stuck for hours trying to get to work and in the end had to abandon her journey and return home.  School for Izzy was cancelled for two days.  We only received this notification just before Izzy was due to leave for school so we had a dilemma.  Clearly she could not be left home alone so grandad decided he would take her walking in the snow, both masked up.  What a delightful time they had,  Though the snow was too crunchy or powdery to make snowmen they found lots to do and returned home freezing cold but laughing and happy,  Hot chocolate was the order of the day on their return and we just had to hope that the cold air killed off any virus that Izzy could be harbouring unbeknown to us.  The following day was fine as Chris was working from home so we were left out of the equation.

Her school along with government guidelines sent out letters to parents attending school to really think if their child could not be taught at home.  We were dreading this.  Had they deemed that they could not offer her a place what were we to do.  Anyway we were fortunate that her parents jobs meant that her entitlement to schooling was good and true and she retained her place, though sadly her two best friends did not.  So now where there were 12 at the beginning of this reduced to ten then another reduction  it has hopefully finished at just seven children in her class.  The sad thing is she has gone from the happy girl loving to attend school to now being a sad little girl who attends without her friends.  There is nothing we can do about this and just hope that she adjusts as it appears that schools may be closed until after the Easter holidays. 


I am joining the group of Amazon shoppers.  Never thought I would but what can one do in these trying times.  It amazes me how we can find anything online through Amazon.  Colin has bought lots of things for his new bike and garage things ( men’s things he would say ) though many women also buy bike equipment and tools too.  I have bought a few things - one being a dye to dye my sons very expensive top that he dropped something on a long time ago and rather than deal with the stain it just got pushed to the back on his cupboard.  He showed me the top and told me how he loved it and could I get rid of the stain.  Despite many stain removal hacks it was not to be so I decided to dye it black.  Amazon delivered the said dye the day after ordering it and now the top looks great!  So pleased to have rescued this and so pleased we have Amazon cos no way would I have touted the high street looking for this dye. Another thing I ordered was a door draught stopper.   ( LOL. When I wrote door stopper and checked it said daughter stopper!  Danielle would not have been amused) This house is an echo one so we are tight and cosy EXCEPT for the integral garage door.  We do get a draught when the wind is really bad and it needs stopping.  Still waiting for delivery so hoping it works. It astounds me that anything one looks for can be found so easily.  Thank goodness for Amazon in these lock down days but hoping we all begin to shop again on the high street when Covid hits the deck. 


We had been thinking we would be booking holidays this year but have now decided to just hang on.  We will likely if things improve later in the year to drive to Spain and bypass the dreaded airports and the need to fly disabled - I hate this- so when and if we do go this will be the way to do it.  If we go for a month it makes it a decent holiday.  We will need to wait until school is up and running as Izzy will need before and after school care too.  Though we do much in the care of Izzy, she is such a delight to us we are also aware of my illness and time is pressing.  This will be the only time we will have ever been away from her for so long and we are so thankful that we have FaceTime so we can keep engaged with her.  We will have to apply for new passports too soon and hoping we get the blue ones now we are out of the EU. 

Being good but sometimes so hard. 

We are abiding by all the government rules totally but oh how I wish there were circumstances where we could bypass.   We have a dear friend, one of a group that spent lots of happy times together.  Sadly she is losing her fight to cancer after a very brave battle indeed.  We are not allowed to go into her garden so can’t even stand at a window and talk to her.  This is such a sad time for so many people.  I hope I can eventually get to see her and give her a huge hug.  So many people are in this position now where they can’t be with their loved ones.  All we can do is stay safe and listen to the rules.  

My son has had to go over to Leeds to sort out his apartment.  Sadly his tenant from Kuwait had to return home due to COVID and the University not open. I hope he can fill it again soon but with these COVID times it may well be it is not rented out for months.  Such difficult times that touch so many  things

Right enough now as I need to catch up with Izzys blog.  Again difficult as we are not doing much to write down for her and nor is she but there it is.  The good days will return when we will will all join the real world again.  It can’t come soon enough for us.  

Warm love to you all. Stay safe and if you care to comment I will say a huge thank you here and now.

Carole xxx 

Saturday, 19 December 2020


My hospital visit 

My health had been suffering the last few weeks and I was hoping this was just a ph blip, it happens.  I noticed a change when we had snow a couple or three weeks ago.  

A walk around the reservoir with Colin and Izzy to make a snowman was so hard.  My feet were so difficult to lift and my breathing was very laboured. I thought it was the cold despite my wearing a mask and carried on.  Snowman built and pictures taken I was more than happy to get back to the car.  Izzy and granddad were very pleased to have built the snowman and many pics were taken. Who knows when we will get snow again. This was the last time I have done anything significant  due to my deteriorating condition. I kept expecting to wake to a better day but it was not to be as the following paragraph will explain why.  

We were surprised last week on going into the bedroom to see my heart monitor flashing like mad.  This meant that something had been flagged up in Sheffield on their monitors and they needed me to give myself an ECG!  This is very simple to do due to my having the chip in my chest.  The ECG seemed to go for a long time and just as I was beginning to think it was a blip in the machine when I got the  tick on the screen which showed it was done and all data was being downloaded and sending off to the correct person to read these results.  Both Colin and I knew this meant something was going on apart from the regular palpitations I often have - it was a first for me in two years, not the normal one of just a brief touch to my chip and the reassuring blip the data had been sent.  Thank goodness for this chip and the ease of taking and relaying results to my specialist.  We heard nothing more about it then but I was in touch with my hospital due to having water retention around my trunk and wrists and thighs.  On top of that my breathing was dreadful (still is) which meant I could not walk far and standing up to brush my teeth sent my heart rate up to 127 bpm which I knew was not a good sign.  An appointment was made for me to attend a clinic on Friday in Sheffield and we were both relieved as we hoped to find some answers.  

There were just three of us in the clinic though all the beds on the wards were full.  More or less as soon as I sat down I was greeted by the lovely medics Jen and Alex.  They asked what had been happening and then I was informed that my ecg had shown “ two unusual things” on it and they were going to see if a heart specialist could put any light onto it.  They did ask if I had noticed anything different and all i could say was the vein in the right side of my neck was more jumpy than usual.  I had had a few pains in my chest but generally I try to dismiss them as muscular spasms!  I was also told that the pressures had risen in my lung, - again thank goodness for the chip in my pulmonary artery which pulled this up.  These chips have to be the way of the future.  Of course whilst they cannot stop deteriorating conditions they may catch a problem before it gets too far.  

It was clear to them that I was struggling trying to breath.  They did note from my Fitbit results -  which they can see at any time through the powers of computers - that my pressures were rising when I was NOT walking but the problem was I just felt too poorly to walk!  Catch 22 for sure.  So yes, I know the huge importance of exercise which for me is a good walk helps our pressures but with breathing difficulties it is very hard to walk. 

Jen and Alex left after virtual hugs all round and another ECG was done on the ward.  I wish I had remembered to ask the doctor I saw later if that too showed unusual data but I forgot, Colin would have remembered but as he was not allowed in this was a question that did not get addressed.  I also did my walk test but not for long as my legs began to wobble.  The results later showed no rise or fall in blood pressure or in my oxygen levels where normally oxygen might drop to 72 percent,  I was not surprised as I had put no effort into this walk as I just felt too breathless to be dealing with it right then and only did a few steps. Time then for my consultation with my doctor. 

I had only met this particular doctor once when admitted in July so though he was very nice we did not have the rapport that grows over the years with my regular specialists.  He was very polite though and told me what I already knew - that I was monitored on just about everything remotely which was a great thing but obviously the machines cannot let them know how I am feeling, We discussed my breathing issues and I asked if I could be low on ferinject.  He said he was wondering that himself as my body is clearly struggling to get oxygenated blood around my body and it could be the result of low ferinject that coats my red blood cells to hopefully help move the blood flow.  More blood tests are scheduled and an overnight stay sometime in the new year to monitor me is on the cards.  He sorted out the infusion and after I had it I was allowed to go home with no real answers but things ongoing for me.  These ferinject infusions can take up to three weeks to show any signs of improvement due to our red blood cells only being replaced one percent per day. Still we remain hopeful. Right now I may be down but I am NOT out and will continue in my belief that I will improve, that my doctors will find a way to help me, I simply will not allow myself to give in. 

Oh and I STILL have water retention despite being at a very low weight so goodness knows quite what I will weigh if eventually we do manage to get rid of it all. I dread to think.  He did ask about my appetite and I said that whilst it is ok I don’t always manage to finish a meal due to total fatigue and breathlessness. 

This morning I made homemade broccoli and blue cheese soup as very easy to get down and enough calories to help my weight rather than the salads and fruit I so love for lunch.   Might be bad for me but if I need to try to stop my weight loss some things must change,  


I have been watching the news reports about Christmas and the changes that have been made due to the latest rises in the numbers of cases and the new strain of the virus that has materialised.  My heart goes out to those that had planned lovely days with family after the heartache of the last eight months.  Quite how it will work I do not know, they can’t knock on the door of all householders to make sure no breach of the rules,  We are not seeing anyone as I said before except for a brief drink under my families gazebo next door, then home to an easy but delightful meal for us of halibut steaks with small potatoes, loads of veg and a sauce of anchovies and capers etc.  I do not have a huge appetite and quite frankly looking at all the food eaten on Christmas Day actually curbs my appetite even more so we are really looking forward to our lovely simple meal - then a little time with the family in the open air wearing masks and back to maybe watch a movie or two.  

We are currently watching "The Long Way Up" featuring Ewan McGregor and Charley Boorman riding electric Harley Davison motorbikes from Tierra del Fuego at the bottom of South America up to Los Angeles, a ride in excess of 13000 miles, so if we are not caught up by then we shall finish seeing them complete their challenge,  This is a very enjoyable thing to watch in front of a roaring fire and the weather can do whatever it likes, we shall be very cosy,  

(Gosh just watching the rules for the Christmas period will be a nightmare for many.  I am not sure if my hairdresser will still be allowed to stay open now or not,  I have an appointment booked for first thing on the 22nd December and I really need this mop of mine cutting. )

My heart is breaking for families affected by these new changes and I just wish we could get this virus under control.  If all followed the rules who knows, maybe we could have curbed it but sadly we see so many who take a great delight in doing whatever they wish and not bothering to wear masks, no social distancing etc.  It makes my blood boil to see these protests going on etc. about their human rights, what about the rights of the ones they may so easily pass on the virus!  We MUST work together to beat this. We have followed the rules even to the extent of not even driving up my friends drive to deliver a cake!  Problem solved as she can drive up our road and take said cake from a wall outside   Food bought in, plans made and then all to be dashed for so many   I understand the reasoning behind these rules but it does not stop me from feeling for loving families so looking forward to these few days snatched away.  How can a loving parent choose between which family to share the day with, son and his wife and kids or daughter and her family etc, which set of grandparents!  Nightmare.  We personally will be fine but heartbreaking for many others. 

Well I must leave this here and get this blog out as there are many lovely people asking what went on yesterday.  So much easier and more detail to do it this way.  

Please have as good a holiday as you can and think about those who have lost loved ones.  The chairs around the table will be empty of many this year due to deaths or the recent restrictions.  We need to think about them and if somebody you know is affected maybe a phone call might go down well so they won’t feel so alone.  Such a sad time instead of a merry one.

Please take care.

Warm love to all.

Carole xxx