Sunday, 15 May 2022

SEEMS THIS IS A POSITIVE FOR PH

HOME AGAIN


We were delighted on our return from holiday to see the letter below from the lovely team in Israel who developed the machine to enable denervation to be carried out.  On reading it there seems to be a positive for this procedure to be continued so hopefully in the future we will see more having this op done.  The op itself has proven to be safe ( something I know as I came through it unscathed) so praying for all to continue down this path

It is very rare indeed to receive a letter such as this and I have done endless studies and trials so it was very touching.  I count myself fortunate to have been given the opportunity for this so no thanks were needed but nice anyway to let us know where we were up to with it.


Firstly, Sonivie, the Sponsor of this study would like to sincerely thank you for your participation in the very first clinical trial evaluating the Therapeutic Intra-vascular Ultrasound (TIVUS") System for pulmonary artery denervation in patients with pulmonary hypertension. It is because of the involvement of participants like you that we are able to take the first steps to evaluate this new potential treatment for pulmonary hypertension. Without you, this would not be possible.

We would like to share the main results that you and the other participants have allowed the Sponsor to generate. In total,14 participants were enrolled in the CLNS01-001 study for an initial one-year hospital visit follow-up which was then followed by a long-term surveillance at 36 months after the pulmonary artery denervation procedure date.


Pulmonary Arterial Hypertension occurs when the blood pressure in your pulmonary arteries (thevessels that bring blood to your lungs) is increased due to narrowing of the small arteries of the lungs.  In this study, the TIVUS" System was used to carry out a new procedure called pulmonary artery denervation. By deactivating some of the nerves around the pulmonary arteries, pulmonary artery denervation was hoped to lead to reduced blood pressure in the lungs, improved heart function, exercise capacity, activity levels and wellbeing. The pulmonary artery denervation procedure used ultrasonic (high frequency sound) energy during a right heart catheterization procedure.


The main aim of this study was to collect information about the safety of the denervation treatment of the TIVUS System in adult patients with pulmonary hypertension. We are happy to let you know that the results of the Trophy-1 Study demonstrated initial safety of the TIVUS" System when used for the treatment of pulmonary arterial hypertensive patients.  The treatment was well tolerated by most of the patients, with pain well managed when present during the treatment and during the study no device-related or procedure-related serious adverse events were reported which demonstrated the safety of the procedure.


The pre-specified effectiveness endpoints noted in the Patient Information Sheet were for haemodynamic evaluation, quality of life score and the 6 Minute Walk Distance. At the 4-month follow-up a statistically significant reduction was identified in the haemodynamic measurements for the mean pulmonary artery pressure, pulmonary vascular resistance and the right atrial pressure. Improvement was also identified in the patient cardiac output, activity levels using the wrist actigraphy data collection device, the 6-minute walking distance completed and the quality of life questionnaire score. In addition, the procedure was well tolerated by the patients, the catheter was easy to use, and the pulmonary artery denervation procedure was around 30 minutes in duration


long-term follow-up of the participants indicated a potential benefit of the TIVUS" System treatment up to 18 months following treatment. These very first results are promising and support future clinical studies to the confirm the good safety profile previously seen and to see if a repeat treatment from18-24 months could be beneficial to patients.


Thank you again for your valuable help with the first steps of the development of the TIVUS" System for pulmonary artery denervation in patients with pulmonary hypertension.




SIX WEEKS ENDED TOO QUICKLY

Our holiday in Spain went exceedingly well and I was fortunate enough to enjoy reasonable health throughout.  It was such a delight to see all of our friends made since we lived in Spain and indeed some we made since leaving Spain.  We had good weather except for one day so cannot complain.  Each day we walked to the Port for coffee and later walked along the Arenal so I could get my steps in.  I did wish I had had the opportunity to have my ferrinject infusion before I went but we coped.  However had I had this I know I would have had more stamina. 

I received lots of e mails giving me dates to see various specialists when we were on the ferry travelling over to Spain.  Although we had been told we would see a specialist urgently we were assured that it would be at least two months so decided to just go for it and have our holiday.  We were shocked when we could have them so early and had to ring each and every one and explain that this holiday was important and we could not make them.  New appointments were made and we knew there was such much ahead for us once back in the UK so we tried to put it all to the back of our minds and enjoy each and every day of our precious time in Spain.

Long leisurely lunches were the order of the day with me then going back to our apartment to rest. Tiredness would just become overwhelming and no matter where we were I would have no option but to go home.  Lack of ferritin is awful and the tiredness we get is so unlike a normal type.  We with pah suffer so much from it as for lots of us our bodies do not absorb iron  and these infusions are a very necessary part of our treatment.  Our friends are all so lovely and would be so understanding so when I had so rest I had no worries around them at all.  They totally understood. 

Colin is planning on returning in September to lead a few walks but I do not wish to fly so will be happy to stay here safely at home.  

AN ABSOLUTE TSUNAMI OF COMPEX ISSUES

Not for me a nice gentle pattering of rain that gives you time to get a raincoat on before the heavens open. No my tsunami of issues rained down on me so hard and fast I barely had time to take a breath, pelting me with one thing and then another.   Since our return home we have had endless rounds of hospital visits, x rays, blood tests, echos etc we have barely drawn breath.  It seems that on top of needing oxygen at night and my carpel tunnel in both hands I now have been diagnosed with systemic scleroderma.  My specialists says this a rare form that attacks my internal organs.  Oh whoopy do indeed.  On top of that I am told there is something else showing in my blood that needs to be diagnosed yet.  They have not got to the bottom of it.  What joy lays ahead.  I am shortly to get my muscle conduction tests too to see why my muscles are wasting away.  It appears my weight  loss is due to my muscles disappearing.   No  wonder I cannot lift my leg onto a buffet to tie shoe laces or indeed even get up if laying on the floor after doing my denervation test.  It takes me so long as I do not even have much use of my arms as my carpel tunnel prevents me from putting too much weight on them.   On the plus side my infusion is working and I have much more energy now three weeks after it took place.  

Next step for me is to see my ph specialist at the end of this month and to have an MRI plus the barrage of other tests, walking, breathing etc that most of us know so well is part and parcel of having ph.  Before then I am to have my injections for shingles, pneumonia top up and my fourth covid one.  These need to be in place before the new tablets I have begun to suppress my immune system take full effect.  I have only been on them a week and I was told it takes four months to work efficiently.  Apparently the "norm" if there is such a thing would be to develop the systemic sclerosis  first and later develop ph but I did it the other way round 12 yers after diagnosis.  She says it is all very puzzling.  When I asked the question would this kill me she was very diplomatic and said "we will talk about that later"  Quite why I asked the question when I am already suffering a life shortening illness I don't know.  On my second visit I forgot to ask her so still the question  sits silently in the background.

None of these will spoil my zest for living.  I will not let it leave me in a heap on the floor.  We have to make the most of our lives and make the most of every precious moment and I intend to do just that.  Covid has helped somewhat with this as we have all got used to wearing masks, something I will need to continue as my immune system gets less and less.  Our friends already are good at letting us know if they are feeling unwell so we stay away from them but apart from that we must live our lives.  So much to see and do yet.

JUNE CELEBRATIONS

Danielle and Chris are having a garden party for the Jubilee.  I will do my bit re cooking so I am making pulled pork, Colin is making a good coleslaw to go with it and we will provide the bread buns for this.   He will also do a huge fruit salad and we will supply endless ice cream to go with it.  I will make blueberry muffins and something else I forgot right now what I said I would do!!!!  The ones invited are mostly family from both sides so know about my condition so will understand my mask.  I do hope we have good weather for this.  We have been busy planting out plenty of flowers in the bank leading to the gate and their house as we want a nice display. 

We decided this year due to so many hospital visits etc to not do much about veg.  We have planted potatoes in the raised bed and onions in the other and also dotted onions all around the garden in the hope they keep the aphids at bay.  Maybe next year we will grow more but this will suffice,  We still have two apples trees, a pear tree and blueberry bushes so it just must do us for now.  I have bought tomato plats though as I love tomatoes.  

I am still walking daily.  Today I got Izzy to school for 7.45 and parked up and walked into town to collect something I needed.  I then walked back to the car and by then I had done 12200 steps so was pleased with that.  I may go out for a small walk this afternoon.  We shall see as my son is supposed to be coming but if he leaves early I will go for Izzy early and walk around the park.  I still remain very positive.

Izzy continues to be a delight but to my dismay she is growing up so fast she is almost galloping.  I bemoan the fact I have lost my baby but she just says "well grandma that is just how it is, we must grow up" and of course she is right but it pains me anyway.  Somewhere in the back of my mind is the saying that I blinked and there before me stood a man,  the same has happened with her.  We just turned around and our curly haired little dot that absolutely adored us is now very capable and does to need us quite the same.  Such is life.  

Though it has been a long time in coming this blog I cannot think of anything else to tell you so I will love you and leave you and of course thank you for reading this.  Take the best care.

Warm love


Carole xxx

 





Saturday, 22 January 2022

IT’S BEEN A WHILE

I know I promised a blog “soon” to some of you asking where I was but so sorry, things have been pretty hectic around here.  The last few months seem to  have been spent running backwards and forwards either to my hospital in Sheffield  or Calderdale Royal or Huddersfield Acre Mills. To be honest we have had a nightmare time trying to get to the bottom of my “complex issues” as one specialist said and though not quite there at least we are some way to getting answers.  One thing has been confirmed is that I have severe carpal tunnel syndrome in both wrists, eventually I will be sent to have one of them done with hopefully the second one further down the line.  Brain issues have been ruled out after an MRI which is a plus but though my back is really bad he won’t operate cos of the pah and the dangers that may occur.  I am waiting now to see the ‘rheumatologist to either rule in or rule out rheumatoid arthritis or scleroderma.  Oh what fun we have.  We know the appointment will not come through in the next few weeks so we are taking the opportunity to travel to Spain, Javea via ferry and drive down.  So many hoops to jump through.   


Typically when i really needed my cleaner to arrive so we could have a good talk about what I needed her to do over the next few weeks she sadly got a migraine so I have written huge lists for her to follow.  She does take good care of our place and enjoys sleeping here so that is a comfort.


I badly needed a pain killer I was given when I had my hickman line fitted so I wrote a nice note to the doctor asking for it explaining that I had just been in touch with Sheffield and they approved it.  Of course the girl on the desk refused to give it to the doctor and told me I could have an appointment for one to ring  me in two weeks time!!!!  I was livid as I was in so much pain. I told her to forget it I would go to Sheffield and ask them if they would hand me the prescription  as they had approved it.  Sure enough they came up trumps and I now have better pain relief, not the best but as I cannot take anything with opiates in it is a tough call for the doctors when t comes to pain relief it is the best I can hope for.    


WILL I EVER TRIAL AGAIN


With all of the above it did make me wonder if I would ever be allowed on a new trial.  I was going to begin one this month but so far it has not come my way.  Though i continue with studies I must admit to liking trialling new drugs to see if they would be of benefit to those of us suffering with pah.  I shall have to sit and see and continue to hope that I can.  I know I owe my life to those that trialled before I received this god awful illness and I am so thankful  but I did love sort of paying back if you know what I mean.  if I cannot at least I gave ten years to trialling them so it will give me some comfort.  


THE WEDDING AT LAST


I was so looking forward to this wedding which was held at the prestigious Holdsworth House and i must say it did not disappoint.  Both Chris and Danelle put so much work into it, the venue the outfits, the favours etc were beyond anything I could have imagined  I was so proud of Danelle and Izzy who looked so stunning.  Chris looked a picture too in his wedding suit as did Harry,, our handsome grandson who looks just like his dad.  At this wedding every single aspect had been organised down to the last detail.  The food was excellent from the canap├ęs brought around while we were drinking before the meal to the wedding breakfast itself.   

My word the room we ate in was truly magnificent, Danielle wanted it to be filled with flowers and filed it was.  White roses and a few pale pink ones adorned every space.  The smell was fabulous.  But I digress.

Before the actual wedding we were in rooms that were used to do hair and make up etc.  This was a lovely place to natter and catch up with those we had not seen in a while.  The photographers were taking a great deal of pictures but oddly enough it did not feel at all invasive.  The atmosphere was lovely but as time went by I could see Danielle getting a little nervous. Izzy too seemed to be a bit worried about walking down the aisle.  Once the ceremony started however it seemed all nerves went and they spoke their vows very clearly and precisely. I was so proud of all that played their part.  Danielle had a wonderful friend Abi keeping her calm and Chris had his best friend Jamie so that quelled their nerves.   

Plenty of pictures were taken both in and out of the venue and outside they had drones flying and taking pics too.  We can’t wait for the  pictures to arrive. At the dinner table there were  tiny almost hidden microphones in the vases of flowers close to where five of us made our speeches.  There were wedding favours for every guest in the shape of a beautiful box tied up with white ribbon.  On opening them we were all given 15 years old single malt for the men along with the stones that you put in the freezer and then when cold drop into the whisky to cool the drink but it does not get tainted with water or any other liquid.  This would be a sin in Chris” eyes.  Along with this were hand made chocolates too in a beautiful box.  The ladies instead of whisky were given a particular gin that my daughter likes with a small mixer and again the chocolates. 
 

Quite a few of us received huge bunches of flowers, amazing and Colin received a delightful gift of not one but two paintings of two people walking along with backpacks on enjoying the mountain scenery.  ( perfect) .  Izzy and Harry received gifts of inscribed jewellery as a thank you for their part in this wedding.  Harry was the ring bearer and Izzy was matron of honour.  


Sadly after the meal I had to go to bed and was fearful I would never to return but I did manage to!  I arrived just as Danielle and Chris were taking their first dance so how pleased I was that I made it.  Though not doing much except for sitting I did manage to stay most of the evening so I was so pleased I dd.  It was wonderful to meet with our now bonded family and thermosphere was so good and loving and yes lively.



My speech went well I think.  Even one of the photographers came over to me to tell me how good it was.  Many told me how very beautiful my daughter looked and though biassed I had to agree.  She looked amazing, we were so proud of them both.  

So the deed is done  My daughter is now Mrs Williams and it was announced at the wedding that Izzy too had now taken this name, we were so very pleased.  


We are fortunate too in that we genuinely like and respect all Chris’ family so look forward to seeing them at more and more family occasions.  


Right well my hands say enough typing and get back to wearing my splints.  


I pray you are all still safe and stay that way.


Warm love to you all.


Carole

Friday, 22 October 2021

HERE WE GO AGAIN

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


DENERVATION


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


TIME AWAY


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


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


FACING UP TO REALITY


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


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


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


GENERAL


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


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


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


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


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


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


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


Carole xxxx




Sunday, 22 August 2021

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

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


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


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


THINGS OPENING UP


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


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


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


TRYING TO GET SOME NORMALITY BACK


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


PH FRIENDS ON HOLIDAY 


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


GLOBAL WARMING


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


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


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


GARDENING


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


WEDDING PLANS

 

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


LAZY SUNDAY


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


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


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


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


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


Carole xxx





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