Saturday, 10 July 2021

STEM CELL TREATMENT FOR PULMONARY ARTERIAL HYPERTENSION

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


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


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


THE DOG LIVES


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


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


TRIAL DATE


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


MAYBE TIME FOR SURGERY 


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


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


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


Take care and warm love.  Thank you for reading.  


Carole xxxxx



Friday, 21 May 2021

IS THIS TRUE OR FALSE?

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


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


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


Pulmonary Embolism


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




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

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


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


Transplant


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


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


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


End of lockdown. 


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


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


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


An overnight stay


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


Still walking


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


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


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


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


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


Warm love and thank you for any comments


Carole xxx


Saturday, 1 May 2021

PLEASE STAY WITH US.

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


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


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


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


June 11th.


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


Life moves on


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


Iron replacement has no benefit.


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


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


The dress.


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


Another A @ E trip


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


Walking


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


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


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



Warm love to all.


Carole xxxx


Monday, 12 April 2021

I AM A HYPOCHONDRIAC

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


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


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

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


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


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

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


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


IT HAS BEEN A FUNNY OLD YEAR


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


VIDEO AND PIC.


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


MRI’s


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


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


SOMETHING TO LOOK FORWARD TO


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



THIS  POOR CREATURE


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


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

 


GARDENING


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


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


Warm love


Carole xxx


  

  





Monday, 1 March 2021

COMING OUT OF LOCKDOWN


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. 


Dogs!!!


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.  


Izzy 


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. 


Watching


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.  


Holiday


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.