Tuesday, 12 March 2019

UPDATE ON CARDIOMEMS IMPLANT

Monday morning arrived way too early as we had to be at my specialist hospital for 7.15 in order for the implant to take place.  My bloods and general welfare had been talked about at a previous pre op visit so we were not expecting any problems.  Fortunately I was quite well and had done my best to steer away from anyone who I thought might have a cough or a cold etc.  

We got up at 5.15 in order to get ready, have a bath, breakfast etc and we left our home just before 6.00 am.  The roads at this time we knew, barring accidents would be very quiet and we do half our journey away from the traffic, driving over hill and dale until we reach the motorway.  

The study I am now doing is called CardioMEMS, It is for patients who have been diagnosed with heart failure as a disorder resulting from damage to the heart from various reasons.  Now though they are wishing to implant patients with pulmonary arterial hypertension so that readings can be taken of their pressures and meds can be changed accordingly, plus they will learn so much just be seeing how our readings change from day to day.

A right heart cath just shows a snap shot of how the pressures are at that given time. We well know our pressures can rise and fall for many reasons, lots of them unknown.  Now CardioMEMS have developed a technology that provides our cardiologists with accurate and reliable trends of pulmonary artery pressure measurements daily.  

The CHAMPION  Trial is already underway in America over 64 sites and 550 patients with moderate to severe symptoms of heart failure who had been hospitalised for heart failure in the previous year were invited to take part.  I am fortunate that I have a facebook ph friend in America called Joseph Thomas Lockhart who was implanted with this device for his heart failure a year ago.  He has been happy to talk me through the procedure and we will stay in touch.  It is now to begin in the UK so hopefully more will be signed up.  I know there is to be a patient panel of those having this device fitted so I will be interested to see how others feel after having this implant.

The sensor is small, about the size of a small paperclip and is delivered via a groin cath.  Once in place it cannot be removed as there is a huge risk of infection.  I have a sort of pillow that comes with an electric unit and through wifi it transmits my info to a website for my team to follow, analyse and advise.    

With this info it is hoped that my medicines can be changed to manage heart failure.  Now the consensus is that it can be implanted safely into patients with pulmonary arterial hypertension also so that their medicines and pressures can be measured too -  hence this new trial for those suffering with pah.   Alex my specialist rang the FDS and was approved that on my visits to the hospital my wedge pressure can be taken also. How amazing that my pressures will be done by the push of a button and not the right heart cath over the next two years.

There were around 11 people in the theatre so I was well taken care off.  The two people from the company that bought the cardiomems had never before seen the lungs of a pah patient and said it was fascinating  to witness the implant going into narrowed veins.  I was fortunate that all went smoothly and all had been explained so well that I was not alarmed when the cardiac monitor shot up so high it bleeped and turned red.  I knew this would happen.  All soon settled down again and after two hours I was able to go into recovery.   It takes so long as the correct place to put this has to be found, after all our veins are very narrow compared to the veins of somebody without pah and of course the team are always diligent in taking the best care of us.  The boring part was being made to lie down for two hours flat after the two hours off the table  then sit up for an hour before being allowed out of bed.

Once dressed the two from the cardiomems company came to see me to show how I was to use the machine. They both complimented me on how still I was throughout it all the time I was laid down having the procedure.   The truth was it was so interesting I did not feel the need to fidget through boredom.

As they talked me through how to do the readings etc it appeared to be quite simple and though the "pillow" I have to lie on whilst taking the reading was hard as heck in truth the whole procedure daily will take no more than two to three minutes.  They thanked me for taking part in the study but I told them it was I who owed the thanks.  The procedure had shown that my pressures had risen and now hopefully between us we can try to bring the pressures down.  There is talk of me adding selexipag to my list of meds but I would certainly rather wait until after our cruise as I know too well the side effects of this drug.  We did take my readings this morning and all went well and my pressures were sent off to Sheffield without my doing anything than other laying down and clicking start.

I am feeling exhausted today but I know that will change, maybe by tomorrow I will feel less tired.  As Colin said to me even though I did nothing but lay down and let them do their work it involved my body and heart and lungs, I am bound  to feel tired.

So yet more research and I know in around six months there is even more to come for me. I consider myself fortunate to always be offered something in the world of pah.  Long may it last until we have the cure.  

Izzy

World book day.  Here is a picture of Izzy.  I think you can guess who she is meant to be, though one of her school friends thought she was a chef due to her wearing the apron!  We thought she made a wonderful Alice in Wonderland.  

I must point out that this picture was taken after a day at school hence her looking a bit like she had been dragged through a hedge backwards!  There is nothings she enjoys more than dressing up and she has many outfits of different characters.  She loves to have her friends over and they all dress up in costume for the day.  

We certainly never had days like this at our school.  Even on the last day of term we always had to wear our uniform, plus our ties and our berets.  

When she returns from swimming tonight she will don her master chef costume.  I want her to make her own chicken nuggets from scratch.  I have taken out a nice piece of chicken and will get the panko breadcrumbs etc out when she arrives.  Hardly master chef cookery but at least we know that all the ingredients are fresh and as healthy as we can get them. 

The family have recently returned from a holiday in Disneyland Paris. They had a ball and must have returned with thousand or more picture, plus of course lots of mementos of a time well spent.     Izzy keeps telling us a little more each time we see her of all she saw and did.  She had tea with the characters and got all the autographs she could possibly collect. Of course you have to pay for the autographs, unlike when it first opened in America.     Our friend was the first Alice in Wonderland and her picture is in a book - I saw it but sadly could not purchase it.  Now the parks are realising there is yet more and more money to be made out of their visitors and so the price of the holiday rises steeply each time you leave your room. Still the memories will last a lifetime and they cannot be taken away.  

Our holiday

We were certainly ready for it though dreading the weather as the long warm days of our false summer were on their way out to be replaced, we were told with gales and rain.  How fortunate we were that the rain, though it did come down fierce and the wind blew hard all happened whilst we were tucked up safe and warm in our lovely motor home.  Our days were spent with very nice weather so we were blessed.  We have all the necessary gear for any type of weather so it would not have put us off going out in it but always nicer if the wind is not howling across the skies.

Our first stop was Flamborough but to be honest I was not feeling too good so we did not do much,  I did not want my illness to impact too much on our time away so played safe.  The following day though was different.  The weather was again quite hot and we went around all the surrounding villages of Bridlington.  How pretty they all looked.  Clean well kept villages most with honesty boxes selling their wares of eggs or jams and pickles etc.  The warm sun shone down onto their pink stone walled cottages and their picture postcard gardens. with willow hedges or well tended green growing hedges of all types of shrub. We enjoyed looking at the names of their cottages -  Honeysuckle House, Home  at last - Peaceful retreat etc.  All were very pretty, even the graveyard was tended to and there were lots of flowers on most of the gravestones.  One of the tombstones we came across was of the eight  men that lost their lives in a fishing boat accident a few years ago.  It was bountiful with flowers placed their by either their families or well wishers.  The church was open and it was such a peaceful scene inside and a nice place to rest for a while. 

Onward then to Bridligton town centre which it is honest to say we were dreading.  I had been told it was now a dump so expected to feel sad at seeing neglect.  What a pleasant surprise.  Much work has been done to renovate this old fishing town.  The promenade, soooo long and beautiful led to a new fun fair but it was not all gushy and loud, rather refined.  Here there were many inside facilities, a swimming pool with saunas offering any type of treatment you could ever desire.  The cafe was well tended and the food looked good..  Squash courts and tennis courts for those that wished to play were all new and welcoming., truly a lovely place.  There is a model village too for those that wished to walk a sort distance.  

Sowerby Hall lies just one and a half miles away.  It is renown for its gardens but to be honest at this time of the year there was little worth looking at so we did not bother.  The zoo was open for those with young ones to attend. Surrounding this hall is an enormous golf club and it looked to be doing well if one can go by how many people we saw playing the game.

After a couple of nights it was away to Whitby, yes I have told you before how we love it.  Quite a few clothes were purchased here by me.  I did look for some Whitby jet earrings to replace the ones I had thrown away in a tissue years before. I could not see any quite like them so left it for another day. We almost purchased some freshly smoked kippers from the smoke house but the thought of how long the smell would linger in our motor home put us off! 

York came next.  There is a great shopping mall here that sells all designer clothes and bags, shoes etc. Once again I did go rather mad here buying way more than I expected to but as most of them were for gifts I felt no guilt. Now comes the task of wrapping them all, something I really hate!!  My biggest delight here was to find an ecco shop, one of my favourite shops for shoes that was closing down.  Everything was so cheap so I bagged myself a lovely pair of pink soft shoes I can wear with my navy trousers for the princely sum of £34 instead of the original ticketed price of £120.00  Bargain I thought.  

Colin cooked most nights as he enjoys it but we just had to have fish and chips one lunch time.  We were recommended a really good fish restaurant and boy were they good.  The haddock, we both hate cod, was white and flaky and fresh with crispy batter.  Naughty but nice.  Another indulgence was a piece of cake at the Marina opposite our site where we were staying, in a farm yard.  The Marina is huge and their cafe, though expensive to my mind did serve delicious cakes.

Back to the farm where baby pigmy goats had just been born Sadly the mother died so its baby was being given to another pigmy goat who had herself just given birth to twins. Slathered with the after birth of the live new mother the new goat was put in the pen with the other two new born twins. We were hopeful she would take to it when we saw her licking it. The following day we went to see it and we were happy to note she was still with us although she was having a bottle at this time. She was too puny to push the others out of the way to be fed by the surrogate goat so they were feeding her in the hope that in a few weeks time she would fatten up and be able to suckle from the mother herself.  

This farm is soooo nice we intend to become regular visitors. They are going to make it a petting farm so Izzy will love it too.  Big fat sausages from their own pigs were purchased by us along with a dozen eggs from the chickens that were scratching around all over the farm yard.  What a gem of a place, we were blessed. 

Sadly all good things cone to an end and I had blood tests due for a procedure I was to be having shortly so we returned to reality.  

It was fortuitous we returned when we did as the following day the long buffet we had ordered for the lounge arrived, made in a nice grey linen cloth it looks well sat inside the bi fold doors.  Also arriving on the back of that were two big lights with shades exactly matching our walls and the blue and gold of the lamps themselves could have been made for our house. Now all we are waiting for are the voiles I can pull on when the days are too hot so we can still see our beautiful views but keep out the strong light of the sun.  

So here we are back to reality.  Colin is playing the piano and I had intended to go round and see the family but they are all out,  They will have much more interesting things to be doing today than entertain me so that leaves me with the awful task of wrapping all those gifts I mentioned before.  I love to buy them but that is where it ends!  

I will end this blog here as I did promise to have it out for you on Tuesday after I had the implant and I know sone of you are very interested in what it all entails.

Much love to you all.  Thank you in advance if you bother to comment or click like, as I say every time but I mean it. That simple act means such a lot to me and to anyone who blogs.  

Keep well

Carole xxx

Sunday, 17 February 2019

R.I.P. STACIE PRIDDEN - YOUR THOUSANDS OF FOLLOWERS WILL NEVER FORGET YOU

Stacie :-  Could fill pages talking about "our" Stacie and yes I can say "our" because she endeared herself to thousands of people with her journey. First through her blog "Life is worth the Phight" and it continued after her transplant. Stacie was a lively bubbly girl so full of life and she was determined to live every minute.


She was born with a heart problem that later developed into deadly Pulmonary Hypertension. The only cure was a transplant and she was determined not give up the fight. Throughout my time of knowing her, which was eight years she never failed to inspire me or bring a smile to my face. Everyone that knew her could not fail to love her. She had a passion for pyjamas and all things Disney and magical. Though much of her life she was poorly she did not let that stop her "LIVING" life to the full..  

We were all astounded to see just how well she did post transplant. She walked the stairs in record time and was jubilant on reaching the top without oxygen. All of us smiled and laughed with her.  Television interviews held no worries for Stacie and she sailed through them telling everyone the importance of organ donation and bringing awareness of our hidden disease Pulmonary Hypertension.  Everyone took her to their hearts and she was honoured to be given seats at a venue she had long wished to visit  - WIMBLEDON!  So one of her ambitions crossed off her list.

In time she met the love of her life Mark Watson. These two were meant to be together.  He totally understood her trials as he himself was a member of the donation society.  He had had a heart transplant many years previously. Stacie moved in with Mark and they bought their little fur baby as Stacie liked to say. - Marzuki.  Because of their determination  Stacie and Mark enjoyed holidays abroad.  Another ambition of Stacie was fulfilled. They raised money to buy a specially adapted wheelchair that could cope with the rugged hills and enjoy the wind on her face and see the wonderful countryside surrounding her. They were so successful in their fund raising that they actually raised enough to buy another two  that can be borrowed and used. by people in real need.  Mark is a gem of a man. Their love shone through in the good times and the bad.  

Together they searched and found the perfect house, Stacie was so excited to be moving in. Sadly it was not to be and she never got to live in it due to her illness but she had the hope, the thought of it and it kept her going. The moving in day was just before she lost her fight to live. Even through all of this, her body finally beginning to give in she still kept sending us messages of hope and encouragement.  

Stacie had the most loving family. Her parents were supportive in all she did and she had her sisters too to encourage her all the way Her nephews and niece also played a huge part in her life and we often were shown pictures of them all and told what they were up to. In the latter few weeks it was more gentle things such as colouring, Stacie loved her colouring books and would often colour with her nephews too.  

Stacie inspired many of us who suffer from the disease. She taught us to laugh through the hard times - that generally better ones would be coming. She showed us all how to live, laugh and love and not get bogged down with the negative, even with all the medicines we need to take just to keep us alive.  She helped to give us strength and purpose with our new bodies that do not work as well as they did now we have ph. She was huge in bringing awareness of ph and just what we suffer from with this illness that does not show itself on our outer bodies, it is wrapped under our skin.  

So Stacie who fought so hard has left us now and it will be a sorrier place here on facebook. Her zest for life shone and she showed so much joy and warmth in all that she did. Stacie had a fear of dying alone but that was never going to happen with her amazing family and her love Mark. She was wrapped firmly in their loving arms as she took her final breath and left us all.  

Stacie thank you for the friendship, for the words of wisdom on my journey at the beginning when I was lost.  For the laughter and the memories. You will live in my heart forever and I am sure in the hearts of the thousands of followers you have.

My thoughts go out to those closest to Stacie, to Mark, her amazing human as Stacie would say it. To her mom and dad who did a wonderful job of raising such an inspirational young lady and to her sisters and nephews and niece. You have so many wonderful memories of Stacie you will never walk alone. Warm love to all  Fly high our darling ph sister and thank you for the memories. xxxxx

And onto inconsequential things after losing such a person

I have said of my desire to donate my body to medical science after my death. My hope was that they can learn something as how often do the medics get to really see inside the body of a ph person.  We know all our internal organs suffer a great deal due to lack of oxygen and also the very toxic meds we take. Also as I had denervation, one of the very few worldwide I hoped this would teach them something.  I have not had a chance to talk to my specialist yet as I see him next week but Gail, a ph sister asked the same question years ago to her medics.  

She was told that they cannot say where the body goes after donation which I think is sad as our illness is so rare a teaching hospital would be the ideal place in my view. Also the distressing fact that up to two years later your family are then told the remains are yours to hold a funeral or do what you wish is a bit of a bummer.  The pain of the death of a loved one would hit hard again after getting a chance to get over it in two years.  However not spoken to my guy yet so will see his reaction.  This does not mean I would NOT donate - any body is great for anyone to learn - happy to be used as a learning tool but if it is that it cannot go to a hospital dealing with ph then it is still a bit of a downer.  Will update in a few days time.  

Footsteps in the snow

A couple of weeks ago we woke to snow, as indeed did most of the country. Imagine our horror then on opening our curtains a couple of days later to see footsteps in the snow going down into our garden. The footsteps were very clear.  Somebody had walked down our steps and into the garden and back again. We had not had a ring on the doorbell and our security camera had not picked up anything in the night. We did note that we had one blacked out vision on the motion detector so were very concerned. How had somebody managed to get to our cameras without being seen, let alone cover them up. We have covert cameras so we were quite worried.  

We looked back on all the motions that had been going on in the night and other than this black one all was well. Were we being checked out for robbery or worse. It wasn't until we came to the afternoon ones that we saw what had happened. Our builder had come back to do a small job and needed to go down the steps. Clearly he did not bother to ring bell which would have alerted us and just walked blithely down, carried out his task and walked back up again. He will never know the consternation we had but we were so relieved to see what really happened.  

Bedroom drama!

For some time now Colin had woken up to find blood on his side of the sheets.  He had a scratch down his leg and we had not got a clue where it was from but assumed that was all it was.  Imagine our horror this morning when he pushed his hand down the sheet to discover something hard and sharp sticking out of the mattress.  Now we change our bed every week, in fact last week due to my leg injury we changed it quite a few times without seeing anything amiss.  As you can see from the picture this piece of metal was sticking up and out of the bedding.  So here was the culprit.  My horror was more for Izzy as she often sleeps in with me kicking her granddad out of the bed. She plays games in bed such as hide and seek. Imagine if that had gone into her eye.  I rang Barker and Stonehouse who said it was clearly an issue ( well of course it is! ) and she would give me the number to ring to complain.  I did just that but was told that nothing could be done until next week sometime when hopefully they would send somebody out to inspect the mattress. In the meantime could we tape it up or something!  fortunately we have another bed but woe betide those that do not.  Who wants to sleep on a mattress such as this.  

Never in all my years of buying mattresses have I seen this.  Many years ago as a single mom our mattresses were not of the quality of this one and I never saw such an issue. My hope is that this is not a manufacturing error that is in lots of their mattresses and somebody does not end up with more than a scratched and bloody leg.  

My leg

After all the issues with my leg you can see how it is doing. Never again will I blithely close the car door without checking my poor leg is out of the way Fortunately I was wearing trousers which stopped all the dirt from the bottom of the car door from entering the wound.  Colin was a great nurse, always ensuring his hands were washed and hand gel applied before touching it. The steri  wipes I had left over from when I had my hickman line were very valuable to keep the wound clean and he was always changing the dressings as it kept bleeding. Anyway it is on the mend now and thank you for all your well wishes.  My biggest concern as I said was sepsis due to our low immune system but I was very fortunately spared that. 

Izzy

As she has progressed so well with swimming she now needs to use the longer lanes one the other side of the pool.  I believe this is so that she can really practice her strokes, which are very good now and move forward with speed etc. Sadly the day will be changing and we are just not just sure if we can fit her schedule in around other things. One option is for a Saturday morning but that is family time and we do not feel we can commit weekly to that. Another day is Thursday evening but as she has an outside school activity already on this day again we are not sure of this. Colin really wanted her to be taught to swim so that we felt safe for her and that she can do that really well.  However it does seem a shame that at this stage, when she clearly shows a lot of promise that she now leaves her lesson behind.

Izzy herself is sad if they do no continue as she loves her time in the pool beforehand with grandad and as she said herself " I am better than all in the class now just when I have to leave". It is a true statement and she clearly is better than the rest. So we are in limbo trying to hopefully see her swimming teacher this week and see if a solution can be sorted out for her.   We shall see.

Holiday

Yes we certainly need one and are planning to go away at some stage soon. It depends when Lucy can move in here with her husband and this time two friends who want to visit with them.  All will be sorted soon so we can pack up our motor home and away we go. Friends are hopefully joining us for three days of this holiday as they want a mini break. We are going to go to my beloved Whitby amongst other places and it will be sad not to be able to visit with my godmother who recently died.  

The walking is lovely to Sandsend Bay and there is a great pub that serves superb food at the end of the walk which makes us more determined than ever to complete it. After our friends leave we will move around to various places along that coastline, maybe  visiting haunts we have not seen for many years, reliving my childhood as it is here and the Lake District where all our holidays were spent, memories, ahhh.  So Whitby, Bridlington, Filey and York here we come.

Kathryn Jenkins

Now this singer has my husband enthralled, he just loves her singing and goes into raptures when he hears her. She is currently touring and we have been fortunate to get seats to watch her in May. I am looking forward to having a night away, a really lovely dinner and sitting and listening to wonderful music and afterwards going back to a nice cosy hotel for the night.  Do any of you like her voice?

I am determined that this year now the house is completed we shall get on and do enjoyable things.  After saying that the garden is underway with Colin spending lots of time and energy digging. I want him to build me a raised bed so I can grow our own veg and also we will have some fruit trees and bushes.  I intend to begin tomorrow planting seed potatoes in buckets as my dad did. I love how easy it is and how great it felt to be able to ferret about and get enough potatoes for tea and leave the rest to continue growing. I hope I have the success my dad did.  

So I come to the end of this very sad blog. With warmest love .

Carole xxx





Wednesday, 30 January 2019

AT LAST - EVERYTHING HAPPENING AT ONCE

All things come to those who wait

I received a call yesterday evening from a hospital a few miles from  me, not my local one and not my specialist one either.  I am to ring up to make an appointment to go to the ambulatory ward for my ferritin infusion!  Not before time and a lot of wondering why it was taking so long and what were the issues around it.  Anyway the specialist I saw two or three weeks ago did what he said, got the results of my bloods - again - and talked to his colleagues and I assume the rang my PH guys and the outcome  is an appointment for the said procedure.  I know my headaches will lessen over a two to three week period when I have had it and hopefully will feel less tired plus my legs will benefit and should not be so jumpy.   So on Sunday at 9.30 I will have my long awaited infusion.  Due to being classed as an asthmatic mine will only take around 20 minutes so 45 mins in total from arriving to leaving.  Good job!  

My pain clinic manager rang me to arrange an appointment for that so we fixed it for the end of February.  With these two appointments out of the way I will be on track for any further developments regarding my health that is due anytime soon.   Once again how blessed we are that we have the NHS that see to our needs.  Yes we may have to wait but in the end generally things get done and we can get on with our lives.

Happiness tinged with sorrow

The snow is due to fall later this week.   We woke to a beautiful sunny but cold day today so we decided to walk on the canal.  The weather was so lovely, crisp and fresh and though I was sensible and wore a mask I could still feel the cold on my face.  The mud crunched beneath our feet as it was icy and the canal itself had lots of ice pockets.  Not many people were braving this cold so we mostly had it all to ourselves.  We promised that once we reached Hebden Bridge we would indulge in a drink and a big home made scone at our favourite cafe.  

Just as I was tiring we hit the bridge and with relief walked over it into the gorgeous town of Hebden,    It always sickens me when we reach here to see the leaflets up in the widows asking if anyone knows anything leading to the capture of the person who murdered 13 year old Lindsey Rimmer and then  dumped her lifeless body weighted down with a concrete boulder in the canal to be found a few months later.  She had been strangled and there were signs of a sexual assault on this very young girl.  Though this all happened in 1994 nobody has come forward with any real ideas who committed this crime. As ever when I walk past the shop she entered at 10.00 pm to buy cornflakes it makes me very sad.  Police think her murder is linked to a serial killer but as yet no real answers for her family.  So though I do love the very quirky town it always leaves a bad taste in my mouth. 

By the time we had our drink  (and yes a scone each with jam and clotted cream) it was time to return home and so we caught a bus back to the top of our road. We see no point in trying to do too much as I do not want to risk a ph day in bed - how I hate those wasted days - though appreciate they are a necessary part of our illness from time to time  to get us back onto an even keel. They force us to take the necessary rest we need. I was pleased to see how many steps I had achieved and know the huge benefit I gain from this. 

Alexa helping me to sleep

Like lots of us with ph sleep often eludes me much to my distress as the nights are soooo long.  However I decided to ask Alexa for help and I had her playing the sound of a storm.  I love storms, the most spectacular ones I ever saw were the ones in Spain from time to time.  I find it rather soothing listening to the rain pelting down and the thunder crashing whilst seeing streaks of lightening zig zag across the sky.  It was relaxing -  that much is true - but to be honest no sleep came my way as I was waiting and counting the seconds between each peal of thunder.  So sorry Alexa it was a no to the app for me.  I have tried a warm bath,  hot milky drink, soothing music and a good book.  None of them work for me so back to the drawing board.  

A good way to raise money

Always looking for new ways to raise money for ph I came across a great one the other day.  The church that is part of Izzys's school is trying to raise money for a new garden in the grave yard  and the grave stones have to be moved round to the side of the church.  Not the bodies which I find so sad but they are old so all is within the law.  Anyway each child is given a full tube of smarties and asked that in return once sweeties are eaten they do jobs for 20p pieces.  The new tubes are shaped rather like a 20 p and fit easily into the tube. Each time they complete a job they get paid in 20p pieces.  You will be amazed at just how much a smartie  tube holds.  I wont give the game away, just try it and see. Once each tube is filled it is handed back to the church and the children can, if they wish take another full tube to try to fill again once emptied of sweets. The children are so intent on filling their tubes they are willing to do any job without any argument.  I loved this idea and happily pinched it from the church!

Me and my girl

Izzy had friends to stay over the weekend so I baked them some shortbread men and took around lots of different coloured edible gels so they could all decorate them.  I also provided them with smarties and a few jelly beans to be cut and used as noses.  We left them all to it and I hope they did not make too much mess!  This turned out to be a huge success and one they have already asked if they can do again!  It was no effort on my part and to see the joy of Izzy and Harry when I took over  everything needed for when their friends arrived was lovely.

I am gutted a little at Izzy right now to be honest.  Well more to the point gutted FOR her.  For a whole year she had waited until there was a place for her on a gymnastics course.  Now I have said before she is not a natural sportsperson but has tried to do somersaults for as long as I can remember, to no avail.  Anyway her turn came and along with her parents off they went for her taster session.  After 15 minutes she refused to do any more, despite cajoling from Danielle so the outcome is she will not be having lessons.

When I saw her I asked why as I knew she really wanted to do them.  Her answer was that she did not know anyone there and none of the teachers either and felt silly that she could not do what was expected of her.  I told her that was the whole point of the class!  She would be taught how to  perform all of the moves. I reminded her that she did not know anyone when she began her swimming lesson or when she began school, that she would have made friends.  She said yes I know that now.  I think she is a little sad she did not stick it out but her time has come and gone.  Her place will have gone to the next person on the list, one fortunate child who has got the position that should have been for Izzy. I really wish this child of ours would toughen up but sadly it seems she is just not the forward pushing child she needed to be when she had this taster.

Pain free times ahead

I note that my tennis idol has had his hip resurfaced.  Colin has had his done a few years ago.  I really hope for Andy that he can return to tennis but sadly I do not think he will, at least not in the capacity that he left it.  I wish him a speedy recovery and most of all to be pain free at last.  How wearing to be in constant pain so though he faces a life without any more wins at Wimbledon he will at least come back to the game in one way or another. Go well Andy.

Brexit

I am not getting into the politics of this one on here except to say how I wish they would all get their acts together and stop behaving like kids in the playgrounds.  This is a huge thing for us and we need to at least try to get along.  I have been watching politics live on television and admit I sometimes cannot make sense of what they are talking about.  I think a big problem is that when we had the referendum three quarters of the MP's wanted to stay in the European Union so how on earth can we expect them to vote for a policy they never wanted in the first place.  However the will of the people must be upheld and they now need to work together.  We cannot go back and have another referendum as this defeats our votes, it means our will counts for nothing if we can keep going back until we get the vote they want.  A lot hangs now on them coming together and making the very best deal they can for us against a EU committee that is determined to make things as hard as possible for us.  I will be glad when the word Brexit is at last put to bed and we move forward, for better or worse.

Quiet times here

So not really much going on in our world right now as medical issues need to be resolved before we can head off to further places.  The house is as of today blanketed in snow as it fell overnight and we are pleased to see the roof is showing no signs that heat is escaping as we have no bald spots!  I am still searching for the two huge lamps I need for the lounge but fear the ones I see in my minds eye do not exist.  We have friends due over for a meal on Friday so I will prepare what I can today as with ph one never knows how they will feel on any said day.  Another wonderful task I shall deal with is to strip my upright vac down. We rarely use this as my robotic one does such a good job but my cleaner does on the new carpets and it needs a sort out.

I hope your days are more exciting than mine are at present.  We are hoping the snow does not stop us getting the car out to collect Izzy from school. The end of our close does get pretty icy and there were a few accidents last year, minor ones to be sure but non the less I prefer not to have any issues.

I wish each and every one of you good health and safe driving in the present conditions.

Warm love to all and thank you in advance if you would like to comment or click like to this very boring blog!

Carole xxx

Oh, I booked my place at the conference in Oxford in May.  If you have not done it please make sure you do so soon as I am told places are going fast.


  




Tuesday, 15 January 2019

MAKE THIS THE YEAR WE GIVE BACK

Now before you all say " I do what I can for ph - as indeed I know that many do - there is still much to be done so I plan this year to go all out and do even more for ph than I have before.  There is something exciting coming my way hopefully but I am sworn to secrecy yet but I am praying it is a HUGE game changer for some in how we are monitored with our illness.  So once more I am going to ask each and everyone of you to search your overlarge hearts and see if you can think of how we can move forward. Whether it be in raising awareness, much to be done still in this field or even having a bake sale to raise money for our much needed small charity. Try to get involved in the numerous studies and trials always coming up.

I know there are people out there, - not necessarily having anything to do with ph personally  - that you may know that do charitable things.  Please can you ask if their next run for charity is for ours, or the next bake sale. Schools often do small things like this but if we do not make them  aware then our name is not on the charity list where money raised is headed. Can you talk to your head master and explain and just ask the question, CAN IT BE RAISED FOR US PLEASE.  

I have a funny feeling in my bones. I have had it a while now that we are teetering on the edge, that it just needs the necessary push until we get the long awaited cure. I do not do resolutions for the new year but this is not a resolution.  I know that this is vital to us all to do all we can.  

In Sainsbury today I saw mincemeat for pies down at 10p from £2.25, this is for the Taste the Difference matured type. A few jars were bought by me and quickly went into my baking cupboard in the hope that when I talk to Izzy's head teacher later in the month I can persuade him that his next bake sale is to be for us. I shall get in touch with our wonderful PHA society and get all the things we need to raise awareness and bake away to my hearts content hopefully knowing I am doing this for our US for PH.  I also found some really pretty bun cases which were reduced down to 30p.  These are so cute the kids will love them so along with all the pies I shall bake some cute buns too.. I just need to talk, ask and work at it. Can you do anything at all to help us.      WE NEED YOU.   

Christmas heartache for the family of Carol Byrne and Mike Binary

Carol and I were not facebook friends so I know little about her ph fight though I do know anyone with ph has a phight on their hands. Sadly on the 23rd December Carol lost her fight, I believe through pneumonia but my knowledge is sketchy so if anyone knows more then feel free to add.

I opened another post to see of he death of a young man called Mike Binary who I believe lost his life at the young age of 31.  He got his transplant but sadly did not wake up from the operation. Once again so very very sad and is excitement and hopes for a new life after his transplant did not follow.   My heart hurts so much for the family. I saw his picture and he could be my boy. It does not bear thinking about.     

As always when we see yet another one of our ph brothers and sisters losing their life to this we all feel their death deep within our hearts, our souls.  We are only human and wonder what comments we will get if we lose our phight, how devastated our family and friends will be. My heart goes out to the family of Carol and Mike who must be in absolute bits.  I never want to lose the pain I feel when we lose somebody to ph, even though I never knew them, they mattered. We are all united in a real and great phight and we all stick together to offer our support. So one again we send all our love and support to her family and hope that they can find peace knowing she is no longer suffering.

Because of course as we do not show ph we are not suffering RIGHT - Well absolutely WRONG. I was told on quite a few occasions over the festivities that I looked really well so in some minds I AM well. I can assure you I am not. My battle to see if I had cancer ended at last at my clinic appointment with the words " You are clear "  so once more I dodge a bullet until my next colonoscopy later in the year where no doubt I will have grown more of the pesky polyps that would turn to cancer if left.

We discussed my need for ferritin but he is so in the dark with my illness that he said himself he is worried it will do damage to my heart. I begged him to ring my specialist but he says he wants yet ANOTHER blood test, must have had six or seven showing low ferritin and now last one anaemia and then he said he will have a conference with his colleagues to see if they feel they can move forward with this. I have never encountered any of this before in my need for ferritin but hey ho, I will comply with all that is asked of me as I am aware that it is so rare and he has my best interests at heart.  I tried to explain to him that lots of us with IPAH get low ferritin, I  believe due to the BMPR2 but he really did not understand it at all.  

After saying all of that we do learn to live our lives to the best of our abilities. We rarely complain  we PHers do we, we just get on with it. PH is not mentioned in our house any more.  This is because it is a separate part of our world, so unless something really bad jumps up and bites us on the bum we just skirt around it. I never want people to not to want to be around us because of our moaning and they certainly cannot say that of us. Diagnosed in 2010 and here I am in 2019 I have been blessed.

I feel so sorry for the new ones that have to battle for people to really see their illness when there is nothing to see. Parents telling their kids to get on with it, husbands saying wives are just lazy so it is a sore point of mine. 

On to happier things

Sorry about the rant but sometimes I could scream as we are always sidelined. We were all poorly here over he holidays with one passing on one bug to another only for it to change and come back at us all with another one!  I am seeing my doctor today so hoping to move on with my latest one. So I have not posted much, though I did my admin work and added the new patients. I did not wish to come on and moan when I saw so many suffering REAL things to moan about! Still it was so nice to see a few private messages from some of my lovely friends asking about me and showing concern as  had not been seen around. I was able to reassure them that I am OK with regards to my ph, still pretty stable as we can be. Mine is just the winter viruses. We did however get a two day respite where we joined friends of ours in Lytham.

I love this town as it is perfectly flat so suitable for a meander around it. The guys took all three grandchildren, Izzy and their own two to do scooting down the promenade etc and after a rest even before we started - had to let these blessed lungs get off to the best start possible - we hit the shops.  I bought a lovely grey trouser suit ready for our conference. The trousers were about ten feet too long but they did not have my size as I am a little squirt so they are now in the shop being shortened.  Along with a pink blouse  think it will serve me well. A stop for rest in a lovely pub was the order of the day and the reality is we were only out for a short time but enjoyed it very much. The beauty of these particular friends is that one has an invisible illness too, not mine but we totally related to her.   

Back to watch the kids in the swimming pool then a decision to be made about where we eat. In the restaurant the evening before we had to wait over an hour, the kids were very hungry and though the staff were very sorry, ours had been overlooked. A free drink does not suffice for hungry kids so we decided to go out the following day.

Sadly the closest place was something called a Toby Carvery and we decided to chance it. My word were we wrong.  It seems you have to take a huge plate and get meat given and then pile on your veg.  I eat from a small plate and asked if I could do here. No was told to me emphatically. I decided against that then as I only wanted the tiniest sliver of meat and a little of veg. So as I went down the list of what was available but he kept on saying no - its off - no - its off -.  Eventually I decided on a prawn sandwich. Wish that had been off too. The bread it was advertised with was off as well, surprise surprise so I settled for sour dough.  The prawns were halved lengthways, so tiny slivers, not the plump juicy ones I had envisaged and were freezing cold so obviously just our of the freezer.  The dressing was so watery as the prawns threw water into the dressing as they thawed.  It was abysmal.  The kids too were told most of the dishes were off.  In time they decided on chicken nuggets. Now they must not have had them either but tried to improvise by taking a slice of turkey and dipping it in batter then burning them in the fryer - yes I did say burning them, no typo  The result was four burnt objects they could not even bite. This meal was supposed to come with garlic bread. It arrived with two blocks of something the size of house bricks. I told the waiter I had built a house with bricks softer than these and he admitted that they had run out of garlic bread so used the sour dough, cut to three inch thick blocks. When the kids picked them up they said they were heavy. Their meals were not eaten either. In the end it was so terrible we all actually started to laugh, particularly as this poor waiter said when he went back in to order the children's meals after the fiasco with mine and they told him they had no garlic bread he said he dare not go out and tell us that so they improvised. Always trying to find a positive in a negative we have made it part of our memories to look back and laugh over.

We went back to watch a magician. Apparently he had been on the X Factor, I do not watch it so  I had never seen him before but as we were there I decided to make one up in the entertainment room.   He was very good with the children and he actually made us laugh a little too.

Following day we went into Blackpool so that one of our team could sit in the ballroom where the dancing goes on for strictly come dancing. I thought the kids would be bored but they were fascinated, even dancing around the rooms two by two and sometimes three. They all declared it was so much fun and want to return again to dance so that will go on the agenda.  

Despite illness we have had all the family around and enjoyed their company very much. When Colin's family came they wanted to do the games they played when their dad was young. Of course we complied and much fun was had playing the game ring on the string, might try it with my lot next year.!

There is much chain sawing going on here right now as the store is ready and once all the wood is split, stacked and away we can begin to level off our garden ready for the spring. I keep watching garden projects to try to glean some info for ours.  Looking forward to it getting into shape.  

This afternoon I have the boring task of checking out all our £1 £2 and 50 piece coins that just might be worth a bob or two more.  We have emptied money boxes where we keep them and most is ready for the bank but we have pulled out quite a lot of them that just MIGHT be worth a little more.  I know for a fact that last year I handed on to the bank the two of the most wanted 50 p pieces so I am more vigilant nowadays.  

Colin is hoping to go away by himself in our motor home for a few days next week. I have hospital appointments so will stay home. A good friend will come and stay with me, plus we have family at the side of us so all is well if any bad turns are taken. Our cleaner and her hubby generally house sit for us so later in the year they are really looking froward to stopping here as it will be the first time for them in the new house. I do envisage alarms going off a lot until they get their head around our complex security system but feel sure they can sort it. 

I ordered something for our lounge yesterday which will be delivered tomorrow. As I have not told Colin what it is I will remain quiet about it until tomorrow then take a pic and post on here. Still searching for two huge table lamps to sit on our side tales but not had any joy yet.

(I wrote this blog two days ago so the said item arrived and Colin loves it. It is the mustard yellowy footstool and complements our lounge well.) 

Izzy is here practising her piano for her lesson.  Now she has done them she is happily playing alongside her granddad things not on her to do list. Lovely to see them sitting side by side and playing away.  

Our log pile

We had a call from somebody felling trees close by yesterday. He said he noticed Colin was swinging his axe chopping wood. I could not hear him very well and thought he was accusing us of taking our wood  from his!  I was quick to say it was all our own, we do not steal and he was equally quick to come back to us and say he knew. He said he and his friend had sat in their van watching Colin swing his axe and were very impressed, hoping they can do such a good and neat job themselves at his age.   He said we can take as much as we like from all the trees he is chopping down and for me to inform family and friends of the free wood. So at the moment we have three people who will take up the offer  but the truth is there is so much we could do with another 20 to clear it.

Oh the dratted tap

As we now rent out our apartment we of course know that things that go wrong are down to us, no problem.So at 8.00 am on New Years Eve we received a call to say that the hot water tap would not turn off. A neighbour went in and turned off the water for her but we knew we needed to move fast.  Plumbers tackle was out of garage and in our boot of the car in minutes as we sped away to see what the problem was. It turned out that it needed a whole tap as the gubbings inside had all split. No issue as Colin in another life, many years ago was a plumber before he went into making and installing equipment for the disabled.  Off he went to B and Q to buy another tap and soon all was sorted - result one happy lease holder.  Fine that was until the following day when we were just about to leave to have our few days away with friends. A plaintive wail that the washer would not fill. I asked Colin if he had remembered to turn the water back on and received a dirty look, of course he had. On then with Izzy in tow as she was coming with us. Whilst Colin was again getting his tool box from the car I went inside the apartment, opened the cupboard and turned on the electric to the washer - hey ho off it went.  It seems that she had turned off all electrics as well as water under the sink. I just hope that this settles down in time as so far I have been summoned once when the washer did not work - she did not press button to start it. Once when the cooker did not work - no electricity to it as she did not turn it on, despite us leaving it on for her it seems she is a little paranoid and everything wants to be off for her. Another call out to show her again where the electricity meter is and one to retune her tv from her old place to this. Whilst we are happy to help I am dreading the time when she will call each time a light bulb blows etc.  

Why get so upset

As admins we add or not people we believe are genuine.  Of course we do not just admit anybody, we have to ask a question or two. A gentleman asked to join us the other day and I went back to him and asked him one or two.  He was not having it and asked what right did I have to not admit him just like that. I had no chance of getting back to him as he blocked me immediately, otherwise I would have told him quite why we do it, to give us some privacy from people not suffering and some who wish to hurt us in sone way.

As I was waiting for Izzy I was grateful to receive notification from an admin from another ph group informing me that she could see we had a hacker. We are always so grateful that we all look out for one another.  I could not do anything from Beth's post to me  but happily Nicole Burish  was able to delete the person and so keep us safe.  

So another new year, another new beginning. All I want is for us all to remain stable until a cure is found, not much to ask for really is it! Also a cure for all illnesses, imagine an end to them all. All suffering gone and peace on earth.  

Today a friend (an ex matron) and myself are going out for lunch with a friend who has had a stroke.  It was this friend who wanted our apartment so that she was in the ideal place should anything happen to her. She changed her mind as she could not be bothered to move. Now she is in an abysmal tiny room  and is wishing she was in our apartment where the lift is brilliant, cleaning staff do a great job, no gardens to cut as we have gardeners and a beautiful well contained space.  I feel bad for her but cannot and will  not evict our tenant They are now looking for another home for her as she only has another three weeks in this one So sad.  

Warm love to you all and try to stay away from the bugs. Comments or likes are appreciated very much.  Please take care.

Carole xxx




























Thursday, 20 December 2018

I JUST WANT FERRITIN

I have been told for over five months now that my ferritin was low but the specialist was puzzled as I was not anaemic.  I explained to him that it was common for those of us with ph and that I would be fine after I had a ferrijnect infusion.  He was still puzzled and for sure it is hard for him to understand.  Iron deficiency without anaemia is a clinical challenge according to "Dr Google". Instead he has said I need to see a gastroenterologist, even though my ph team agree I do not.  So here I am still waiting to see said person and now my blood tests show I am also anaemic as the time has gone on without said infusion.  

We know full well how low ferritin makes us feel. More heart palpitations, more weariness, dizziness, leg pain, irritability and shortness of breath - like we are not short of breath enough to begin with! headaches. feeling sick, oh the list goes on.  So here I am longing for my infusion just so I can get my "get up and go back " which has got up and gone !!   I was told three weeks ago that I have been moved to the urgent list so hopefully this dilemma can soon be sorted and I can get back my zest for living.

Death of Joanne Witcomb

So sad to read of yet another ph death.  Joanne was a very private person so we do not know much about her life  but we do know she had a loving husband called Robert, she was 44 years of age and she also had two sons.

Joanne waited for her transplant with hope in her heart.  Sadly,  though the transplant was carried out at the end of November Joanne did not wake up from it and died a few days later.  We know the complexities of transplant is not a "cure me" fix but a life changing operation, sometimes for the better and sometimes not.

My heart goes out to all of those grieving for Joanne and the ph team that did their very best for her and her donor and family who freely gave in the hope of letting somebody live a longer life.  Sadly it was not to be but thy all gave of their best for Joanne.  R.I.P. Joanne.  I am so sorry I do not have a picture of her but I know you will all join with me in thinking about her and the sad outcome.  

www.phocusonlifestyle.org

Here we go again.  How fortunate we are to have so much detail, so much help online for all aspects of coping with ph.  The above is a new online resource designed to help with all aspects of living with ph.  The research and care behind it to offer all of us here in the UK has been immense.  Once again I take my hat off to all those dealing with this new focus group.  Enjoy.

Interesting and pleasing to see that if you now ask Alexa what pulmonary arterial hypertension means she will tell you.  She tells of how it is the high blood pressure in our lungs.  Technology, yeah, another way to raise awareness for us.  

It was the LIE that was offensive

A couple of weeks ago my hubby had an appointment for a follow up at our local hospital.  As usual we arrived way too early, not for us the cavalier attitude of "they will wait for us" we sometimes see.  Always aware of how fortunate we are to receive such care we have always had the policy better to be early.  After checking in he was sent next door as is the norm for an x ray.  30 minutes later it was his turn to get changed into the gown for said x ray to take place.  I went back to the cliic to await his return and join him when he saw the specialist. After another half an hour and no sign of him returning for his appointment the receptionist and I were slightly worried. Others going for x rays later had returned and his appointment time came and went.  The receptionist from the orthopaedic clinic rang x ray to find out where he was only to be met with a derisory comment that he had only turned up two minutes ago!!!!    We were both aghast as she herself had clocked him in and I had sat with him in x ray and waited with him until he went into the cubicle.   So we both acknowledged that there was a lie going on here.

Hot foot me next door to x ray just in time to see him come out from his cubicle and scurry next door for his appointment.  He said there had been a problem with the patient before him for that particular x ray side which happens.  We had no issue with this but I went to see the receptionist to ask her why she had lied.  Why had she implied that he had only been in the department for two minutes which meant he had in fact turned up very late. Well to say she was an arrogant pompous soul would be correct.  Cold and distant she scurried off to see the x ray technicians.  I followed her down to reassure them that my beef was not with them at all but her.  It was the lie that offended me.  Anyway fast forward to the following day when I returned to take the matter further.  

It turned out that the receptionist was an agency one who had total lack of empathy with patients and it had already been decided that she would not be invited to return to the hospital for that reason.  It is not like me to kick up a fuss in hospital, indeed I kept if very low key, no raised voices and an interview room was made available so the I could voice my concerns away from the other patients.  I explained that we were so upset because by her lie it appeared we could not care less for the service we receive in the hospital.  that we put ourselves above all the staff and specialists that take care of us when in fact the very opposite is true.  We are proud of the care we receive and we know we are blessed.  It just takes one rotton apple to make it seem it is not working  Fortunately all times were logged, arrival, move over to x ray etc so it could be seen that the lie was there, that we had not been cavalier with our attitude. 

The head of the department said their goal was that anyone who entered their department felt welcome  This woman was NOT welcoming to anyone, not just us as previous complaints had been made.  When we attend hospital it is because there is something wrong with our health.  We do no need to be looked down on and lied about  This is the first time we have EVER encountered anything other than the best care ( except for when the A & E could have killed me four times over if we had not refused their treatment) - they do not understand ph.  I hope that she learns a lesson so that wherever she goes after this appointment she is kind to the patients.  

I thought I knew

I bought a beautiful linen tablecloth and napkins a while ago as our table is now a different shape to the previous one.  I carefully stowed these items away in our linen room thinking I would know just where they were.  I have shelves for flat sheets, shelves for pillow cases, towels, duvet covers in abundance etc.  I have drawers containing other items that I use frequently and drawers in here with old photographs, we all have so many do we not. I just KNEW how well this room would work.  Guests could just walk in and see at a glance clean towels and sheets etc and help themselves.   So why did it break down when I - the organiser - wanted this table cloth.  I searched and searched, though everything was clearly in view and neat and tidy.  In the end I gave up and went out and bought another one.  On Monday I needed a frame for a picture and this room also houses the drawers containing all of these.  In the last drawer there were my long lost items.  I must have stuffed them in on moving day and forgot about them.  So  I was not as clever as  believed at my organisational skills.  

It is THAT time of the year again

Most of you will enjoy a day with family members surrounded by love and laughter.  Memories will will bandied around, do you remember when, who, how etc.  I know I do this every year but once again I ask you to think of those that will be missing a special somebody at their table.  Not always lost to ph though we do concentrate on them here but those that died and donated organs etc.  or lost to other illnesses, For those it is a bitter sweet time as the table is incomplete.  The smile or hugs from the one missing is so sad.  So please take a little time out to share a thought for those in such a position.  

Living a life with PH Blog

Below is a copy of an article that appeared in the Winter 2018 Emphasis Magazine, some UK readers will have already read it but posting again for newbies and overseas PH friends alike.

































All change

Though we loved our sofas we had at our old place it became obvious that this furniture did NOT work in this house, wrong colour, wrong texture, wrong shape.  So we made the plunge and bought new ones  and they will be delivered on Sunday.  I cant wait as I believe it will turn our lounge into a really cosy living space.  We went out last week and bought two tables for the sides of the sofas and now I am heading out to buy throws and more cushions.  I hope we made the correct choice of colour.   - will post a pic next blog so you can tell me.  I went against one persons thoughts and for another so we will see.  It took some convincing to get Colin to agree so I just hope I got it right or it will be an expensive mistake to make.  

Up until last week nobody had used our upstairs shower room so Colin decided he needed to try it out. Good job as water came out of the shower and onto the floor. So once again our wonderful (NOT) tilers let us down. Colin can sort it fortunately as we never want them in our home again. Yesterday saw us going out to buy silicone of the correct colour and grouting to right their mess. I am thankful though that this be be rectified before we have company staying over as a flooded bathroom is not the first impression I want them to take away with them. 

Izzy

Weather being for us it would appear that Pen y Ghent, the mountain Izzy will next  climb with her granddad will be on Saturday. Clearly as an experienced leader all must be in place to make sure of safety, weather, times of darkness, correct clothing and as always a first aid kit holding enough stuff to mount Everest!.  As Colin himself said he is taking precious cargo with him this time, Izzy.  

She is very excited and keeping her eye on the weather.  Failing this Saturday we hope there will be an opportunity before she heads back to school in the new year.  If she gets this one under her belt then she has been promised Snowdon in the Spring, her goal!  So I am hoping the weather is kind and that this climb happens for them both.

So as this year comes to an end I know I owe such a great deal of thanks to my A Team, each and every one of them for their devotion to us all and their amazing care all round.  I am also thankful we have ph forums where we can go and talk to somebody who really knows what we are talking about, that GETS us.  We have an amazing organisation called PHA UK here in the UK and they have once again organised for us a conference in the Spring, a chance to meet old and new friends.  I have been blessed so much by so many and I thank you all for being my friend, whether ph or otherwise.  I hope that 2019 brigs us ever closer to the cure and that we do not lose any more to this cruel disease.  

Warm love to each and every one of you  Take care, have a great time and speak in 2019!!!!

Carole xxx

Wednesday, 5 December 2018

RIP SALLY -- THANK YOU

To be honest this was going to be my penultimate blog.  I felt there was little to say, it has all be said so I was going to leave at the end of the year, Not the ph community but just the blogging.  However I would lose many of my friends who read my blogs, sometimes upwards of 2500, sometimes  less.
So I have decided to continue as long as people are willing to read them. Bless you all for the comments you write, it does keep me motivated to continue.  

Sad death of Sally Kinney Maddox

Sally lost her fight and sadly died just a few days ago at the beginning of December. For  those that knew her, either in real life or as a supporter for people with her disease it came as a huge shock.  Many people were writing of their devastation to lose such a strong lady who had served her time as a ph patient trying hard to bring awareness.  This was a huge blow to the PH Community as a whole, as indeed the loss of any one of our ph friends.  Sally died in Atlanta aged 49, way too young. She was one of the PHA's Periwinkle Pioneers, a select group of individuals responsible for advancing care for individuals with PH and helping to change the history of this disease.

Thank you Sally for what you did for ph.  You served our community well.  Rest in peace.

Distressing post

On our ph facebook page, only seen by members and their carers so we can talk about our disease, emotions etc away from our loved ones we saw an awful post.  This was a lady who lived outside of the UK who feels so very distressed of how the medications make her feel, the constant cost of trying to get them through insurance and her ph is getting worse.  She wrote that she has done with ph.  Her meds are in the bin.  She has told her family who are distressed about it but she just wants it to end.

We know too well how awful the meds make us feel.  We know how we are treated like we are making up how bad we feel as we look amazingly well.  I for sure have stopped saying how I really feel, my answer is a simple one of "oh you know up and down days" and leave it at that.  Family and friends are not really interested in listening, and why should they be.  We would have told them of our struggles in every day living at the beginning and have learnt to get on.  I have begged some of them to do the straw test.  Pinch your nose and breath just through a straw in your mouth, climbing stairs etc. Doubt any one of them has even tried it yet this is OUR LIFE. I ask them to try to think that this is my FOREVER though my body has learnt how to cope with it.  There is no getting better from ph as there is with some cancers or some strokes.  Just different ways of getting on with coping with it.

Of course the messages were quickly put out to her to our ph friend to please think again.  Think about your family who will miss you.  One post even told her to think about how hard the end is with ph, being slowly suffocated by you own lungs.  I begged her to keep going, to stay strong cos I still believe we cannot be long away from a cure.  This was all to no avail and I worry about how she is now.

We are fortunate here in the UK to not have worry about the cost of our drugs.  We pay our percentage of wages right from day one of our first pay packet.  This all goes into a pot and means that health care is paid for for all, no matter how much money we have.  I know people from abroad think we do not pay but really it is like paying into an insurance policy as lots of countries do. They take out a policy and  pay monthly and you are covered. We pay monthly and are covered and we have no chance of avoiding it.  It is a separate tax we pay.  So for us here in the UK we have already paid our insurance premiums and are assured of our medicines.

There is nothing we can do for the lady who has had enough.  Sometimes at the beginning I felt this way too but just battled on and now I am in a fairly stable place.  Though I know my condition can change in an instant my goal is to remain strong, with maybe a wobble now and again!  I hope thee said lady changed her mind, fished her meds out of the garbage and can find herself in a stronger place.

And relax

Well for me anyway.  We have been busy making the house our home, putting up pictures and mirrors in the correct places etc.  Now at last when the day is over, the daylight growing dimmer we can have some time to just rest.  We take ourselves off to the lounge and sit down amid our squishy cushions with a drink in hand and enjoy the views from our huge window and look out on the world beyond.  We can we watch the sunset and the colour streaked sky and marvel at nature. A pair of binoculars always rests beside our couch and is used by many that visit here.  Our views are spectacular, even on bad days there is always something to see.  So are we there yet, are we settled.  The answer is mostly, the garden is the next thing to tackle.  I  myself am busy trying to find the correct furniture for outside on our closed terrace.  I have also promised Izzy as her bedroom is really big to make her a seating area with a small table and two chairs.

Last weekend she had her first sleepover and it went well but she said she wished she had the table so they could take a jug of juice up and lots of fruit in a bowl so that it was like their own house!  I have promised to deal with this and it will make a nice addition to her room.

The sleepover was fun.  The girls were darting about here there and everywhere as they played hide and seek, clearly Izzy had the advantage as she knew all the nooks and crannies to hide.  Both girls made us cards from all the things in Izzys' craft drawers.  The little girl that stayed said how she had enjoyed herself and thanked Colin for the "porige"  - her spelling - and that she loved it!  No mention of my spaghetti or my delicious apple crumble she ate with relish!   She loved all the fruit that Colin piles on top of porridge, kiwi, grated apple, blueberries and sweet cherries etc.  Oh well.  So will we do this again, of course we will.  The house was alive but once it was over we did appreciate the peace too.  

Celebrating 20 years of marriage 

Considering we were engaged three weeks after we met and married at four months after we met I think we have done well.  We are surviving coping with this terrible disease.  Our dream of living in Spain ended with a bang when I was diagnosed so that dream sadly left us and we sold up 12 months after diagnosis when we felt we were unable to use our villa as we had intended.  We have survived yet another house build and the move into it, a very very stressful time.  Still always a positive, we lived a lovely life in Javea and made lots of lovely friends, we DID it, we lived our dream.  We have survived the loss of most of our family and some friends who really cannot comprehend how poorly I really am and just cannot be bothered or forget to invite us to gatherings.   Through all of this we are standing tall  and proud.  I do all I can to trial for new meds, take on any study etc.  Both of us are determined to be on call to help in any way our ph community.  So this anniversary I did not think I would see came and went yesterday.  I hope we have many more still in the pot to come.  Colin is my strength, my rock, I am blessed. 

We did not make a song and dance about our anniversary, instead we took ourselves off to a lovely restaurant at lunch time when I am generally feeling my best and enjoyed a nice meal.  Later in the evening I had a small glass of bubbly and just relaxed and we talked about our earlier years of marriage. Would we do it all again knowing the problems that came along the way - in a heart beat. My life and the lives of our children changed a great deal for the better when I married Colin and he has proven to be the kingpin of this family, long may it last.  

Izzy has just been telling us how much she loves us all and who comes first on this list.. Happy to see an obvious  Mommy first, then an equally obvious granddad and joy of joys I come equal to Chris who is, I am happy to say and amazing dad to Izzy.  She said she has begun sometimes to call him dad and I am so pleased.  He certainly deserves the title as he is really lovely with her and has watched he grow over the last five years.  

This made me cry - And didn't they all look well

Click on the link below - Please keep the video on when you have seen and heard the song and children as you will then see another video about ph. Be aware, you just may have it without knowing..... yet.  We must bring awareness of this terrible disease.

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZIy4v34uvjA%26feature%3Dshare%26fbclid%3DIwAR0eK9pefpJ9950ZRqiFIUBv2Jh_Dp-7VK-kCNkVs5VXJfhX30ZBToxfS2g&h=AT1ucX8TbD5f4j2C6AmVmgUEA0LAhVLzTL6cCcmD-ZsGzlKZ94CpPKdzQjtTUS89C0EsinJ4hVVxRTyWqupXt7q8UhXd57gDuOJDk7hqS7HI2ERCFwFdhzBDF0U

I am finishing with this post that came on my news feed.   This is just one of the reasons we were asked to get our MP's to go to a meeting in Parliament to help to bring awareness of PH.  This touches people more than showing us oldies suffering. How terribly sad a note to finish on. So IF you are not yet on an organ donor register then please pease do this NOW.  just a click is all it takes.
Remember this could touch any one of you.  Please please always be aware of this cruel disease.  If you see posts asking for help then try to be there.  If you see people struggling to live with it then lend a hand.  Remember their disease is invisible so try not to dismiss them because you cannot see a broken leg, loss of hair from chemo etc. We matter too and these children on the video never had a chance to live.  

So once again warm love to all.  Your comments or likes as ever are appreciated more than you will ever know.  

Carole xxx