FILMING FOR PH

A few days ago we spent a delightful couple of hours with Mary and Jules from our PHA UK Association.  The object was to film seven people and their journey to get diagnosed.  When finished this will be used as a teaching tool and for many things ph related.  I believe many of us had a struggle living with this disease and not being listened to by our general practitioners.  I sincerely hope it helps in some way as I know for myself had I been diagnosed sooner my outcome would have been better.  I know I am fortunate that my A Team got on the ball and rescued me just in time but my concern is for those people still not being listened to.  I do wonder how many are suffering but not being diagnosed.

The filming went very well and though a little nervous at the beginning I quickly was put at ease and we had a super time.  I have been filmed for ph before so really I should not have had any concerns but there it is, I do occasionally get stressed about even small things,  Mary and Jules were kind enough to send us some photos that they took of us in our garden.  Sorry about the state of my hair but it does seem to have a mind of its own and it was a little windy in our garden.   

 Catch up with PH family

October 21st should be a fun time as our PH group at Sheffield is having a lunch for up to 100 ph patients and one carer each.  This is at no cost to us and I am so looking forward to this as we all miss our conferences we used to have before the dreaded covid.  I don’t believe all the tickets have been taken yet so should any ph patient that attend Hallamshire wish to attend please get in touch with Shaun at the PHUK organisation who will be able to issue tickets.  Having been a patient there for many years I do know there are plenty of hotels around and about should anyone wish to attend the lunch and  wish to stay overnight.  Not sure of the range of prices but well worth a look to extend your time in Sheffield.  This gathering and lunch will be a super way to reconnect with patients or make new acquaintances.  I believe each specialist hospital will be having their own this year so keep a look out for any info that comes your way.  

                                                                                       Gardening. 

We are at the stage of harvesting our crops.  Small though they are it is very  rewarding picking our own things.  Haul yesterday was another pile of onions, strawberries for breakfast, potatoes, some for the next two meals but some already in potato sack whilst still loads to be harvested.  Tomatoes are ready for picking now.  Yesterday we picked a pile of plums from our tree and I made plum jam.  This was very satisfying indeed.  In the morning we had collected blackberries and though we had already picked 2 1/2 pounds from the hedge opposite us we decided to go to our special blackberry picking spot in Copley in our way home from shopping,  In 15 minutes we had picked 3 1/2 pounds easily between us,  we had enough for our needs so left for others to collect.  Once home and plums jam made I then moved on to make Colin his favourite topping for his yogurt.  This is a very easy blackberry syrup.   Way too sweet for me but I was happy with the result.  A beautifully clear syrup.  So easy to do and now in four jars ready to see him through most of the year.  He only has a little at a time.  The spare blackberries will do well in the freezer and are going to be used as a blackberry  and apple sponge to have with custard over the Christmas period when we have family over.  That is the end of my black picking for this year.   Now I just need cooking apples to pick and stew to freeze .  I don’t grow these just eating apples and this year they have not done well at all with most of them dropping off the tree whilst still small.  I think it is the weather but who knows,  our blueberries were poor this year too.  Our herbs have done well and the rabbit next door benefits twice a week by eating a little of these.  She squeals with pleasure when she smells them. 

 General News

My ph still appears to be stable though my breathing is not the best.  We are trying to get to the bottom of this and many tests are being done or have been done so hoping for news soon.  I do have a tilt test and barium meal thingy coming up which is sadly on the day of a dear friends funeral,  Richard was a great boon when I began at my local Thespian  group and taught me so very much and we had such a laugh too.  We are hoping I can get my testing done asap and get to the wake in time to see his partner and lots of other good friends too,  I am hoping it goes well at my appointment with no hitches.  I don’t want to postpone it as we need to get to the bottom of my issues so we will try to do both.  

I am waiting for the full breathing test appointment which again will be at Sheffield and also  to be seen about a silly thing on my face.  It is just to rule out cancer which I don’t believe it is but my doctor wants to have me seen quickly so Tuesday it is for this one,  On the same day I also  have an appointment to check my white cell count which is extraordinary low.  I do take immunosuppressants which do lower them a great deal but mine is way too low so they test us for all kinds of things, leukaemia being one but again I am confident I don’t have this.  Anyway tests being done on Tuesday and then another two weeks later so should be closer to finding out what is  going on.  My specialist is being very thorough and I am also being checked out for diabetes and my thyroid.  I am waiting for an appointment to see a chiropodist due to getting way too many blisters on my feet despite my walking boots being made specifically for me, my specialist is concerned the blisters may lead to sepsis.  What a struggle as I try to keep fit by walking yet this may lead to serious consequences to my health,  It never ends but I am blessed with the care I receive and leave any worries on their shoulders. 

Football

I have been loving watching the Lionesses playing football this year.  Today they play Spain in the final so the result will be over by the time you read this but it will be a great March to watch.  Colin is out on his bike this morning as I write this but will be back to watch with me as he too has been very interested.  One thing that does disappoint me though is to see once again fouls being carried out.  I was hoping that as it was women playing they would be more bothered about the game than fouling to try to win but there it is.  Let’s hope it does not go the way of the men’s football that to me got too physical it put me off watching,  OK I suppose I should accept it is the way it goes but for me I would prefer not to see people being deliberately stood on, pushed or hurt in any way.    

Add on.  Awwww we lost.  Gutted but must admit Spain played a great game though still too many fouls,  Well done Spain. 

My daughter and husband and two grandchildren are still away on their holiday in Spain.  We have missed having them next door but the holiday appears to be going well.  Colin has enjoyed looking after the cats as he gets lots of cuddles in.  As it is next door it is doable.   Nice and easy, just a quick walk through the gardens and into the house.  It works.  We wouldn’t be doing it if we still lived where we lived before we built next door to them so another plus on our move.  

Another add on. As we were watching football we looked up to see a smiling Izzy.  She had just arrived home from holiday a day earlier than I had thought but at their scheduled time.  We said she had not been home, just came straight round which was nice.  I did. not get to see our Harry who was dropped off at his moms house on the way home.  Hopefully I shall see him soon. 

It is almost time for the children to begin another year at school. We can’t believe Izzy will be starting year 2.  From the shy scared little girl she is now confident.  She catches busses too and from school and catches busses to meet her friends in town for lunch etc at weekends,  Scary to see how quickly she has grown but very necessary for her to be independent as she grows and develops.  We have an app  on our phones so we can see where she is when we need to.  

Right now she is very much into history and requested for her birthday pictures of all Henry V111 wives and also Queen Elizabeth as she was his daughter.  Not sure why she has not requested one of Mary his eldest child who though declared illegitimate as a way for him to divorce Catherine of Aragon went on to become Queen Regent.  I must ask her on her return.  Anyway all pics are now delivered and just been returned from the framers ready for her turning 13 in September, yes a teenager, now the fun begins…………..

Well I must now get on and maybe prep our evening meal, sea bass, our own potatoes, lots of veggies etc.  nice and simple.  Colin cooks the sea bass and honestly he does such a great job they would approve on master chef.  Beautiful crisp skin and lovely and flaky flesh, not dry not raw, but perfect, with brown butter and capers drizzled over it is a delight.  He will finish with yogurt and his gorgeous blackberry sauce I made him yesterday,  I may make a jelly for me.  Sort of gone off sweet things.  

I hope you all go well with whatever you are up to right now.  Thank you for taking time out to read this.  

I send warm love to each and every one of you.  

Carole xxx 

PROMISED FOLLOW UP - AND A LINK TO MY TRIAL:

I posted yesterday about my pressures when I returned home from my penultimate trial date.

Of course it raised interest as I expected it to do that.  At that time I could not share any more details of the trial drug with you for reasons I will give below.  I do hope that it will explain  little more and to stop a particular person from believing that those that trial and do not share too much are not very nice .  There are valid reasons behind why they do not share.

I have trialled many many times, sometimes being on two at one time and on each and every paper I sign the forms that say these trials come with risks, side effects and even death.  Yet these people continue to trial for the same reason I do, we know too well the devastation of ph, this unseen disease, we need a cure not only for ourselves and our fellow ph brothers and sisters but for the ones that come afterwards.  We long for the day a person suffering with this is told that there is a drug that will CURE them.  This is why we trial.  I do wonder if the person knocking the ones that do not share has actually trialled.  I ask because if she has done she should know there are strict rules put in place by the Pharmaceutical companies about sharing information until we are told.  If we do so we risk not being allowed to trial again.  Lots of money is invested in each trial, how would it be if a rival company took hold of the trial and made their own drug, remember it takes years for each trial to come to fruition.  There are loads of reasons why we are not allowed to say too much which is why I only said how my pressures had dropped.  Now however I have permission to share as I have spoken to the main man concerning this drug, a guy I have huge respect for and would not  wish to go against him in this.  You would have seen me write about him before and our regard for him, his name is Alex Rothman.  Yes this is a Sheffield Doctor of cardio thoracic and this isis own baby.  .

What we all need to remember is that 

a}  I do not know which dose I was on or even if I was on the placebo, though both myself and my doctor believe it is too much to expect my pressures to have dropped like that, after all I have been on the same meds for 12 years so why suddenly drop in the last eight months since taking the drug if not the drug responsible..

b} We need to remember that  I am the first person on this drug to have come so far.  There are only another two on the drug and they are not as far on in the trial as I am so they may well not have the same result as I do, who knows in this trial -way too early to tell. 

c}  If I wish to continue to trial and I certainly do then  it is up to me to share only that which I am allowed to, nothing else.  I never wish to be taken off a trial or be told I am not responsible enough to take part.   This goes for anyone trialling so please respect them, do not knock them for not telling you the ins an outs. Remember they are doing this to benefit us all.  

d} Trials are NOT easy.  Much time is taken up with hospital visits, numerous tests which lots of people find scary and invasive, right heart caths for instance have seemed to me to be a constant though I know not all trials require these so check them out first.  The side effects may sometimes be bad but always discuss again with doctors if this is the case.  They do not wish us to suffer from doing these trials, our health and well-being is always at the forefront of their minds when working with us.   Remember it is a team effort.  There are generally studies around if you wish to take part in one of those.  I have been on two for many years.  

Who knows if this drug is the game changer we have been waiting for, all we can do is hope, pray and wait.  I still expect many ups and downs, life is a roller coaster with ph and for no reason we can suddenly change for the better or the worse.   This along with my systemic scleroderma makes life a balancing act of making the  most of the ups and just getting on with the downs as best we can.  

This trial for me has been very interesting as through it all I battled covid where I tested positive for 20 days, no fun when you are immunosuppressed , and then RSV which after a three week hospital stay I was still recovering from up to two months later,  one would have thought my lungs would have called it a day and worsened so I believe as does my doctor that this drug is responsible.  

Now I can tell you that the link to the drug is:-

LTP001 

https://clinicaltrials.gov/ct2/show/NCT05135000

I do hope you find this of interest.  Now for the money shot.  Whilst we KNOW pharmaceutical companies make a lot of money out of drugs we all know that before they reach them the work needs to be done to get it to that stage.  This is where our specialists teams, our researchers etc come in and actually work to get a drug they believe works for us.  Remember this work is not funded at this stage which is why we need money.  The following paragraph relates to Colin and it will be the end of the link to Just Giving.  We shall then close it down.

Must share with you all, though i suspect a few of you have seen this amazing poem received today from our own Tess Jewson.  Colin was washing the motor home when I read it to him and tried to hide his tears cos of the water but the truth was he did shed a tear or two.  We were overwhelmed.  This lady has quite a talent methinks.  

Colin is happily back at home and is getting on with all outside jobs such as edging, not for me to wield those huge electric shears and washing the motor home, blowing all the paths and garden etc.  So far he has not gone into any detail of his next adventure though I did overhear him telling Alex my doctor who led my trial he is considering Ireland.  Watch this space.

Below is a video -  very short - of him coming through the gates at Leeds station where I collected him from after his epic fundraising ride.    He tells you all thank you for donations etc.  

Link to `Colin's Just Giving Page: -

bit.ly/LeJogForPHAUK

At the hospital yesterday he said he felt like a media star as it was already known he had completed the challenge and they were so impressed with him - I was too. 

So after reading about trials which are so important to us if you wish to donate ( I know many of you have for which a huge thank you ) please feel free to do so.

If you are interested in trialling drugs for ph then ask your specialist who may well be able to put you on one he deems suitable.  Remember not everyone can trial, there are some trials which your specialist would deem you unfit for so do not be disheartened but just remember we are grateful to all who at least try and in he meantime there are those who do, all we ask is you not to disrespect us for not telling all you feel we can.   

Now I must walk and then return home to clean out a couple of cupboards as I have bought new glass double walled mugs but need to make way for them!   It will be odd walking without the watch and phone that I had to keep with me 24/7.  

Wishing you all the best day and sending big hugs.

Warm love

Carole xxx 

TWO WEEKS TO GO

Colin has been keeping very active indeed to keep up his fitness for LEJOG which begins less than two weeks away now.  Apart from his usual keeping up his fitness on his bike and his general exercises he does daily he has loads of work to do regarding the house.

As we had just been away for five weeks clearly there was much work needed to be done.  I said how veg patches had been moved or hoed etc but he has now begun cleaning all the stone paths around the house.  Not a small task as we seem to have lots of it and what with that and trying to get ahead with every other task he never seems to stop.  However he is in a good place and can’t wait for his PH project to begin.  He is having a T Shirt made by the PH Society and will wear it each evening when he gets to his hotel to try to raise awareness again for us.

Everything is now in place including his last train home when he has finished  This has been a nightmare as strangely enough you cannot book one seat, no you need to book two one being for your bike!  You do not pay for two and the bike does not go in the compartment with you it is just how it works.  Anyway last bit done now and my task is to get him to the station at Leeds early doors so he can catch his train to the beginning of his journey.

LEAVING ME IN A GOOD PLACE

When Colin goes he goes with the knowledge that right now regarding my pah I am in  good position.  We saw my trial doctor today and he is so pleased with all my tests and in particular the day when I walked 11 miles!  (we are pleased with the walk too)  so all appears to be well.  I will attend Sheffield again in a month as it comes to the and of this particular trial.  I have been asked if I wish to continue on the medicine (still don’t know if placebo or meds though they tell me I should know when I stop trial and start med)  of course I said  yes as anything  for ph and always hoping for a good result for us all.  

NEW BUT NOT FOR A GOOD CAUSE

We went into Harrogate yesterday so Colin could get his bike serviced before the ride.  As we had to wait for a while we decided to do some shopping for clothes.  I had gone through my wardrobe and got a huge bag for the charity bag and need to replace.  We found a great shop and the assistants were absolutely fabulous.  They sorted Colin out with a fabulous jacket with beautiful colourful lining and the most amazing shirt I have ever seen.Though reluctant at first to try the shirt on he was persuaded by myself and the assistant.  The fit is so good and the material so lovely he just had to say yes.  Job done for him but there was a ladies section upstairs so up I went.  The assistant immediately pulled out three pieces which she felt would flatter me and the colours were so me.  I tried them on and she was right.  Job done except the trousers were too long so this necessitated in a drive to a local store where they turned them up within 24 hours.  Now all I need to do is iron said items and we are ready for the sad day when our friend is laid to rest.  As he was so well known in the world of business and play we know there will be hundreds attending so we are aware that we may not even get in to listen to the service and will need to listen from outside so to that end we are taking big coats too so ready if needed.  It will be a very sad day to say goodbye to Pete.

IZZY IS DOING WELL 

We have Izzy for two weeks while her parents are on honeymoon.  I have to say that to date she is behaving really well, though she always does for us.  We are having a good time with her and she is eating well and doing any tasks with a smile that we put her way.  She has learnt that if she rinses her hair really well after shampooing and conditioning her hair well she really does not have to wash it every day.  The proof was today as she went off to school with a head of clean smelling lovely shining hair on day five after washing.  Dare I hope that she maintains this regime as her mom say she is very lazy regarding rinsing of it.  I hope that I have taught her a valuable lesson that to take a little time can save a load of time in the right circumstances.  We shall see.  

Hair wash day tomorrow so will be very interesting.  I have begun using a hair care regime by Kevin Murphy and love it so I bought her some little bottles to try.  If she does well with it I will treat her to the big bottles.

As this blog comes to an end I will once more put in the link to Colin’s LEJOG “Just Giving” page, anyone wishing to donate to our PAH charity via this may do so from there, I believe it is straight forward.  My donations will go in when he begins the ride in the hope that it may jog (pardon the pun) others to do the same.  It is all a really good cause and so necessary we support groups such as these.

Click on this link : -  https://bit.ly/LeJogForPHAUK

If you have trouble donating please contact me and I feel sure we can sort something out.   

In the meantime  I send you all warm love and good wishes  as the weather turns better and we can enjoy some mild weather.

Carole xxxxxx         

THE DAY LOOMS EVER CLOSER.

Our five week sojourn to Spain has come to an end and we spent our first night here in our own home cosy and warm against the outside temperature being much lower than we had just left behind us.   Colin did amazingly well keeping up his cycling ready for LEJOG, his bike ride across the length of the UK from May 4th to raise much needed funds for our PH UK Association.  If there are people out there still willing to give then please do so, the link is below.  For those that receive one of our amazing PHA magazines Colin features in the latest spring edition.  

Link you need to copy and paste  -          bit.ly/LeJogForPHAUK

I have received messages from a few people who have tried to give and the page just does not seem to accept their donation.  I do not know why and looked it up on Google.  They do tell you how to get over this and donate so please now is the time.  All preparations except for one leg of his train ride home from Scotland are now in place so no going back.  

It has been some journey getting where I am now from Christmas.  After my time in hospital  suffering badly from RSV I feared never getting back to any level of fitness.  I was determined though to try but my body did not cooperate.  I am  writing this to those that feel like giving up.  I feel most of us have done from time to time when the going gets so tough.  

I met with my specialist just before going on holiday and expressed my frustration at not being better almost two months on from infection,  he reminded me that I had been very very poorly when admitted and recovery takes a long time.  I asked if I would be able to get back to walking considering the results of all my tests.  He was very hopeful but said it may not be whilst I was away, it may take longer.  I was aghast at this and told him I would ensure that I would do my very best to walk along the ocean daily extending my steps as and when I felt able.  However it seemed there was a likelihood that we may not even get away at all.  I just could not hold down anything.  I was constantly sick and just needed to rest all the time.  The decision should we go, could we go was open to the very last morning of our departure and the two friends we were going with were not advised until just before we left home.  Once on the ferry I did seem to recover somewhat and felt hopeful for the future.  

Things did not go too well for Colin who got a really bad tummy infection which left him a drained wreck.  There were talks of who would drive who if he did not recover enough to make the journey through Spain.  He rallied however and though still feeling drained was able to drive us to our first stopover at a Parador Hotel.  All was not well with me however as the sickness returned with a vengeance and I declined dinner on our first night and had a few spoons of soup in our room.  My trusty sick bowls travelled with us all the way and were well used.  

On arriving at our apartment things took a turn for the worst with one of our group not feeling quite right in the tummy department and me getting this infection really badly.  I was unable to keep food or drink down me for six days until we decided enough was enough.  I was so cold despite the temperature being high and even a dressing gown and thick blankets could not stop me from feeling freezing,  My belly hurt so bad and my eyes were sunken and my skin looked grey.  Colin was on one of his bike rides with a friend who had gone biking with us and I was on the couch when I turned to another friend and said I was ready to go to the hospital as this could not go on.  I won’t go into details but believe me I had never been so poorly with a tummy bug before and it just went on and on and on.  The guys returned from their bike ride and Colin took me to Dénia hospital where to cut a long story short I stayed in overnight and was rehydrated for 17 hours and given two lots of antibiotics through a drip and sent home with two more lots of oral antibiotics.  It seemed my body was in quite a state.  On arriving back at the apartment the following day we had made the decision if no real improvement we would head back to the UK.  That night I was very sick and so we were all fearing the worst but hey……..  after a restless night I woke to a day feeling way better and so the walking began.  

Steadily at first I walked and I walked and I walked, one day doing almost eleven miles so I was so chuffed. I never did less than seven miles a day which for me is 17500 steps but often I was achieving way over 22 and 23000 steps depending on what we were up to, one day doing just short of 11 miles.   I sent my specialist a message asking him to check out all my readings from his end and he was so pleased I had achieved my goal.  Is this a result of the trial drug I am on or just the fact that the weather was so lovely and the scenery whilst waking along the ocean front was so breathtaking I do not know but I was ecstatic.  

Colin and his friend continued with the bike riding twice a week and walking some of the mountains and exploring caves so he was a happy chappie.  Morning coffees were taken by the side of the ocean in the port daily, or even a few times daily and very much enjoyed.

We did spend time with lots of our friends that live in Spain either enjoying long leisurely lunches and walking around the different villages around us.  Sadly one of our group caught a terrible chest infection.  Of course our concern was for him but also fear for me as I knew I could not cope with another one.  So his second week was spent on antibiotics with no real improvement so he required a second course which appeared to do the trick.. These illnesses of course curtailed some of the plans we had made before we left England but at least we had the sunshine and made the most of the days we could get out and about,   

Colin and I decided to cut our stay short in the apartment due to circumstances and travel up through Spain spoiling ourselves by staying  in gorgeous hotels and seeing parts of Spain we had never visited before or had just flashed through whilst travelling.  This was an eye opener and we were often open mouthed staring at their beautiful statues, or plazas or many of the gorgeous buildings.  Our hotels on route were stunning and the breakfasts out of this world, though we did decline the Cava lots of the guests were helping themselves to for breakfast, it’s not really our thing.  

We spent our final night in Spain in Santander in a fabulous hotel and for the first time ever walked around this city we had always believed to be too industrial to bother looking around and oh how wrong we were.  What an amazing place with lots to see and views around every corner.  We enjoyed our best steak EVER here in a restaurant thanks to a maitre de  who took pity on us,  We  had not realised that Saturday it seems all of Spain go out for a meal so we were turned away from one after another eating places.  We could have got in at some that were  playing loud music and and televisions for sport but that is so not us so around and around we searched but also admiring the cobbled streets filled with bars and restaurants, no trouble with drunkards  here and everyone having a good time.  We realised Santander had much to offer and promised ourselves god willing a return visit here in the future.  Anyway I digress, we eventually hit upon a lovely looking restaurant and it appeared to be empty.  Generally we would walk away asking ourselves why was it empty but it looked so pretty and clean and rumbling bellies led us in and we asked for a table.  At first it did not look promising but two of the guys got together and decided they could seat us.  How grateful we were as once we took to our seats the place just filled up with those with reservations, It was packed.  

We chose a starter to share and it was tempura prawns. My word never had we tasted any prawns this good. A huge dish appeared on the table and here we were, faced with prawns in the lightest batter with a little chilli we felt and lots of chopped chives on the top.  They had cut the prawns into bite sized pieces and covered them with the tempura batter and seasoning. The bowl was huge and we both said thank goodness we had only ordered one starter to share.  The menu was extensive but we both decided on an entrecôte steak though half dreading if the steak was not cooked correctly or was tough,  none of it though.  It was perfectly seasoned with the right amount of pink, no blood seeping out of it into the salad. The pepper sauce was just right and the steaks could be cut with a butter knife.  We declared our last full meal to be perfect and left them a good tip to show our appreciation for being given a table and such great food.  We then enjoyed our walk back to our  hotel for our final night in Spain.  

Packing our car the following day we were glad of such a big underground garage to repack our things and for me to retrieve my trial meds to take back to my hospital  on the way home.  We noted a few cars with the UK sticker and assumed that like us they were headed for the ferry.  Up we went in the car lift, a first for us and out to search for our final breakfast.  We had decided against the hotel as we wanted to walk and wander and explore to get an appetite before leaving Santander. We parked our car at the ferry port and did more meandering. Then sadly we said goodbye to Spain and headed off for my visit to Sheffield for my trial appointment.

We stayed overnight at Halifax Hotel in Sheffield, close to the hospital and hoped this appointment would not be too long. We had a boot full of five weeks of everything we deemed necessary for our stay and just wanted to get back to deal with it,  Fortunately we were only there for around four hours and all seems well.  So home it was to three lots of washing and a beautifully cleaned house. We were greeted by Izzy who had been looking out for our car and the biggest hugs from her in a long time. She was so glad we were home and she helped us ( a little) with our unpacking.  Both of us decided we could not be bothered shopping so managed with things from the freezer.  We had bought the biggest sack of mandarins from a local market where the guy that picked them had just arrived with a new batch. First they insisted we try one which we were happy to and then he poured us a sackful of the ones he had just picked from the trees fresh that morning.  We gave Izzy a big bowl full and are looking forward to walking with a couple in our pockets later once organised. Three lots of washing dome and we are back on track.  We shall see what today brings and keep you informed of Colin’s journey toward LeJog and his fundraising for such a worthwhile cause.  

One of the donations he received was from the sister of Pete Duffy who sadly lost his life to ph and the donation was in his memory,  The ones we lose to ph are never forgotten and we felt so blessed to receive this.  I tried to reflect on the ones gone before but it is too painful to think for long which is why we need to fund more research and keep receiving all the info we are given by our PH Association we owe so much to.  My hope is one day there is a cure so every penny helps at funding this cause,  Please if you have not donated I am actually begging you now to give whatever you feel you can. This disease causes so much heartache for the patient and families of those affected by such a cruel disease.  The day looms ever closer for Colin to get on his bike and don his ph t shirt ( which we have forgotten to ask Mary to order so must do it today ) and ride off into the sunset to raise us much needed funds.  

Hope this blog finds you all as well as can be and know that I care for each and every one of you. 

Must get up now to begin the day.  

Warm love 

Carole. Xxx

WHAT A FRIGHTENING WAY TO START MY DAY!!!!!

I have long considered myself to be a strong independent person.  My life has not always been easy and I can’t say it has always been happy but i did consider myself to be in a good place right now a happily married woman with kids and grandchildren.  Like everyone there have been pitfalls to climb out of, some of my own making and some through others but I have always seemed to cope with what was thrown at me.  One of my sayings was “down but not out” when going through bad stages in life.  Something happened tonight that knocked the stuffing clean out of me, kicked my legs from under me and left me a pure shrivelling wreck - a person with no voice to answer back or energy to deal with my life threatening  predicament. 

I am in hospital right now due to catching a cold which quickly turned into a cough.  Yes to somebody immunosuppressed or pulmonary arterial hypertension that is all it took a simple  cold for me to face up to the brutal reality that I am not invincible after all.  That I am in fact nothing more than a piece of blotting paper laying on the ground in the rain.  All it takes is for the blotting paper to become too wet before it becomes nothing more than a piece of mush, unable to be used at all.  Try and pick up the paper and it reduces it even further to just a squelchy mess and here is where I found myself in the early hours of this morning.  

I was admitted to my local hospital due to low oxygen levels which had hit me like a sledge hammer.  Only two days before I had been to my specialist centre and had almost the full works, bloods, 6 minute walk test, ecg, echo and the list goes on.  We were all so pleased to see how well I was doing. These were my check ups for a trial am for my illness so were very thorough  For those without any knowledge of pulmonary hypertension please read up on it not forgetting the PULMONARY  hypertension which turns it into another ball game than the hypertension many people may have. I have pulmonary ARTERIAL hypertension . So feeling secure for a while in the knowledge that this heart and lungs so badly damaged when first diagnosed it was deemed ready for the knackers yard had -  due  to the wonders of science, researchers, doctors, nurses and yes you name it the list goes on of people the who have kept me safe -  led me to a safe haven for yet another length of time.  

Moving on then to my admission to my local hospital reluctantly as I did not want to use up the precious time of our overworked NHS staff and resources I had to admit defeat.  Being plugged into an oxygen machine for the first time as an absolute must became something very scary indeed.  I fly with oxygen always but never needed it throughout  my daily life. I have been checked out for this but fortunately was deemed too well for it.  My experience now of being unable to move from the bed unplugged without canisters and nose plugs or face masks has given me yet a greater understanding of how it is to live for those burdened in this way.  There is a way for those who do not have this condition to see how it is to live with the narrowing of lungs in daily life.  Put a straw in your mouth and a peg on your nose and then try to go about your business.  Yes the air you breathe will be sucked into your lungs through the straw, let me tell you it is tough, very tough but that is everyday life for lots with this condition.  Please let’s see this condition for what it is, life limiting, life threatening and even though thanks to research and new meds our status can often now be termed life shortening instead of terminal ( though indeed it can be terminal too) we do lead a more limiting life than most. Yes there are a lot of words with limiting in that sentence but that is the fact, limiting life,   

Now I am rambling.  So here I am in my hospital bed and liaising with my family at home and my wonderful PHA UK association team as my hubby of 24 years and our ph media is putting together a press release  and a JUST GIVING page for PH research  You will read more about Colin’s story on Facebook and media so this is not about his challenge but to ask you though to please if you can and do donate do not leave it there.  Equally as important as donations which go directly to our society I am asking you to share if you will any media about this condition to raise vital awareness about this very rare unknown condition,  It just may save the life of yourself or a loved one someday.  It can be just one of the articles read and almost forgotten that sits at the back of your mind that may resurface and jog a memory and move things on to a quicker diagnosis and better outcome for others.  

Now back to my story,  Despite lots of meds and oxygen plus changes in antibiotics I am still plugged in 24/7 to this life saving oxygen.  Just to go to the loo only feet from my bed means I have to unplug from the wall, plug into a canister which goes with me to the loo and back, unplug said canister, plug back into the wall and stuff mask on face and lay down to recover.  My heart goes out each and every time to those of my friends who do this 24 hours a day whether through ph or transplant,  Life is so tough.  

My experience this morning was one I never wish to repeat.  I had thought maybe life was getting better.  Despite one doctor feeling I may have a blood clot myself and another doctor thought not which has proven to be true, my predicament has proven to be NOT a clot but the after affects of a cold I caught which quickly turned into a chest infection limiting even more the power I had in my lungs.  So I was feeling on the up, yes still poorly for sure but more upbeat about it, less scared.   A good friend had visited and helped me to shower in a calm and peaceful manner ( first shower in a week as too poorly to cope before ) and rubbed moisturiser on my poor cracked and broken skin due to the systemic scleroderma.  Life had to be getting better didn’t it,  I had a couple of nose bleeds so oxygen pressures were taken down a notch and I was still managing as long as I was plugged in so surely things were on the up.  

Fast forward then to 5 am this morning.  I woke with my whole  body screaming out for breath but none would come, Never do I recall fearing death was so close.  Not only was it snapping at my heels but it’s teeth were snarling into my face as it tried to take me out from this world and into its dark and dismal own.  I was on the road to hell.  I could feel nothing but terror when I realised I had lost my oxygen, I was no longer attached to this life saving pump which had been keeping me alive.  I was on my own and it showed me how absolutely necessary this pump was to me at this time.  My body was screaming out for air but I had no strength to shout out for help, no strength to scramble to find my call button, no strength to do anything.  My desperate gargles because that is all they were and feeble gasps bought two nurses running.  Fortunately my bed is the closest it could be to their station and they quickly took charge.  One found the oxygen and attached me again whilst the other pumped up the flow to get my pressures under control.  The enormity of what could have happened and the realisation of how fragile this life is hit me once again so giving me the heading for this blog about blotting paper.  I am not so tough as I believed I was and like blotting paper which has its uses that can be gone in an instant if faced with a deluge of water so too could I have been without the oxygen and the quick thinking actions of the wonderful nurses who tore into action and saved the day. 

After recovering from being a blubbering, shaking quivering wreck I felt the need to write this blog and hope that there are some who will when they find the Just Giving page please donate.  ALL MONIES go directly to the cause,  Colin has funded this whole journey himself and was happy to do so in the hopes of raising of course money but also awareness of this shocking disease.  The link to the page is below and you will be helping such a wonderful charity.  By the way if you are a taxpayer there is a button to click which gives even more to the cause through the government.  You will be able to see each day Colin’s journey on Le Jog ( Lands End to John o Groats ) unaided, no support, all under his own steam, a one man band indeed.  For those on twitter etc if you would be so kind as to share as and when this story to whoever you have my heartfelt thanks, we need to share it far and wide.  It could be your loved one one day dealing with such things. Let’s work as a whole and do all we can to spread awareness for diseases that are so rare they are little understood,  All it takes is a click of the share button but it would mean so much to the cause of awareness of pulmonary hypertension. 

So another day looms for me attached to my pumps, right now I am also attached to my transfusion of antibiotics The doctors and nurses are calmly going about their business taking care of us all in such a wonderful way and thanks to their quick action I am able to write this blog.  Yes the blotting paper is drying out thanks to them and though I will never ever forget this experience and hope it is one I never endure again it has given me a greater understanding of lots of my ph friends worldwide.  

So as you go about your day I wish you a peaceful one my friends, I wish for you calm and good health.  

The link to the page is below and I leave it to you if you feel you can donate but if you do not then at least by reading this a tiny seed has been planted that may help you to one day bring about the much needed awareness of such a worthy cause.  

Warm love to each and every one of you from this partially dried out blotting paper.

The link - https://bit.ly/LeJogForPHAUK

Carole 

I AM NOTHING MORE THAN A PIECE OF BLOTTING PAPER AFTER ALL

I have long considered myself to be a strong independent person.  My life has not always been easy and I can’t say it has always been happy but i did consider myself to be in a good place right now a happily married woman with kids and grandchildren.  Like everyone there have been pitfalls to climb out of, some of my own making and some through others but I have always seemed to cope with what was thrown at me.  One of my sayings was “down but not out” when going through bad stages in life.  Something happened tonight that knocked the stuffing clean out of me, kicked my legs from under me and left me a pure shrivelling wreck - a person with no voice to answer back or energy to deal with my life threatening  predicament. 

I am in hospital right now due to catching a cold which quickly turned into a cough.  Yes to somebody immunosuppressed or pulmonary arterial hypertension that is all it took a simple  cold for me to face up to the brutal reality that I am not invincible after all.  That I am in fact nothing more than a piece of blotting paper laying on the ground in the rain.  All it takes is for the blotting paper to become too wet before it becomes nothing more than a piece of mush, unable to be used at all.  Try and pick up the paper and it reduces it even further to just a squelchy mess and here is where I found myself in the early hours of this morning.  

I was admitted to my local hospital due to low oxygen levels which had hit me like a sledge hammer.  Only two days before I had been to my specialist centre and had almost the full works, bloods, 6 minute walk test, ecg, echo and the list goes on.  We were all so pleased to see how well I was doing. These were my check ups for a trial am for my illness so were very thorough  For those without any knowledge of pulmonary hypertension please read up on it not forgetting the PULMONARY  hypertension which turns it into another ball game than the hypertension many people may have. I have pulmonary ARTERIAL hypertension . So feeling secure for a while in the knowledge that this heart and lungs so badly damaged when first diagnosed it was deemed ready for the knackers yard had -  due  to the wonders of science, researchers, doctors, nurses and yes you name it the list goes on of people the who have kept me safe -  led me to a safe haven for yet another length of time.  

Moving on then to my admission to my local hospital reluctantly as I did not want to use up the precious time of our overworked NHS staff and resources I had to admit defeat.  Being plugged into an oxygen machine for the first time as an absolute must became something very scary indeed.  I fly with oxygen always but never needed it throughout  my daily life. I have been checked out for this but fortunately was deemed too well for it.  My experience now of being unable to move from the bed unplugged without canisters and nose plugs or face masks has given me yet a greater understanding of how it is to live for those burdened in this way.  There is a way for those who do not have this condition to see how it is to live with the narrowing of lungs in daily life.  Put a straw in your mouth and a peg on your nose and then try to go about your business.  Yes the air you breathe will be sucked into your lungs through the straw, let me tell you it is tough, very tough but that is everyday life for lots with this condition.  Please let’s see this condition for what it is, life limiting, life threatening and even though thanks to research and new meds our status can often now be termed life shortening instead of terminal ( though indeed it can be terminal too) we do lead a more limiting life than most. Yes there are a lot of words with limiting in that sentence but that is the fact, limiting life,   

Now I am rambling.  So here I am in my hospital bed and liaising with my family at home and my wonderful PHA UK association team as my hubby of 24 years and our ph media is putting together a press release  and a JUST GIVING page for PH research  You will read more about Colin’s story on Facebook and media so this is not about his challenge but to ask you though to please if you can and do donate do not leave it there.  Equally as important as donations which go directly to our society I am asking you to share if you will any media about this condition to raise vital awareness about this very rare unknown condition,  It just may save the life of yourself or a loved one someday.  It can be just one of the articles read and almost forgotten that sits at the back of your mind that may resurface and jog a memory and move things on to a quicker diagnosis and better outcome for others.  

Now back to my story,  Despite lots of meds and oxygen plus changes in antibiotics I am still plugged in 24/7 to this life saving oxygen.  Just to go to the loo only feet from my bed means I have to unplug from the wall, plug into a canister which goes with me to the loo and back, unplug said canister, plug back into the wall and stuff mask on face and lay down to recover.  My heart goes out each and every time to those of my friends who do this 24 hours a day whether through ph or transplant,  Life is so tough.  

My experience this morning was one I never wish to repeat.  I had thought maybe life was getting better.  Despite one doctor feeling I may have a blood clot myself and another doctor thought not which has proven to be true, my predicament has proven to be NOT a clot but the after affects of a cold I caught which quickly turned into a chest infection limiting even more the power I had in my lungs.  So I was feeling on the up, yes still poorly for sure but more upbeat about it, less scared.   A good friend had visited and helped me to shower in a calm and peaceful manner ( first shower in a week as too poorly to cope before ) and rubbed moisturiser on my poor cracked and broken skin due to the systemic scleroderma.  Life had to be getting better didn’t it,  I had a couple of nose bleeds so oxygen pressures were taken down a notch and I was still managing as long as I was plugged in so surely things were on the up.  

Fast forward then to 5 am this morning.  I woke with my whole  body screaming out for breath but none would come, Never do I recall fearing death was so close.  Not only was it snapping at my heels but it’s teeth were snarling into my face as it tried to take me out from this world and into its dark and dismal own.  I was on the road to hell.  I could feel nothing but terror when I realised I had lost my oxygen, I was no longer attached to this life saving pump which had been keeping me alive.  I was on my own and it showed me how absolutely necessary this pump was to me at this time.  My body was screaming out for air but I had no strength to shout out for help, no strength to scramble to find my call button, no strength to do anything.  My desperate gargles because that is all they were and feeble gasps bought two nurses running.  Fortunately my bed is the closest it could be to their station and they quickly took charge.  One found the oxygen and attached me again whilst the other pumped up the flow to get my pressures under control.  The enormity of what could have happened and the realisation of how fragile this life is hit me once again so giving me the heading for this blog about blotting paper.  I am not so tough as I believed I was and like blotting paper which has its uses that can be gone in an instant if faced with a deluge of water so too could I have been without the oxygen and the quick thinking actions of the wonderful nurses who tore into action and saved the day. 

After recovering from being a blubbering, shaking quivering wreck I felt the need to write this blog and hope that there are some who will when they find the Just Giving page please donate.  ALL MONIES go directly to the cause,  Colin has funded this whole journey himself and was happy to do so in the hopes of raising of course money but also awareness of this shocking disease.  The link to the page is below and you will be helping such a wonderful charity.  By the way if you are a taxpayer there is a button to click which gives even more to the cause through the government.  You will be able to see each day Colin’s journey on Le Jog ( Lands End to John o Groats ) unaided, no support, all under his own steam, a one man band indeed.  For those on twitter etc if you would be so kind as to share as and when this story to whoever you have my heartfelt thanks, we need to share it far and wide.  It could be your loved one one day dealing with such things. Let’s work as a whole and do all we can to spread awareness for diseases that are so rare they are little understood,  All it takes is a click of the share button but it would mean so much to the cause of awareness of pulmonary hypertension. 

So another day looms for me attached to my pumps, right now I am also attached to my transfusion of antibiotics The doctors and nurses are calmly going about their business taking care of us all in such a wonderful way and thanks to their quick action I am able to write this blog.  Yes the blotting paper is drying out thanks to them and though I will never ever forget this experience and hope it is one I never endure again it has given me a greater understanding of lots of my ph friends worldwide.  

So as you go about your day I wish you a peaceful one my friends, I wish for you calm and good health.  

The link to the page is below and I leave it to you if you feel you can donate but if you do not then at least by reading this a tiny seed has been planted that may help you to one day bring about the much needed awareness of such a worthy cause.  

Warm love to each and every one of you from this partially dried out blotting paper.

The link - https://bit.ly/LeJogForPHAUK

Carole