DRAWING A BLANK

This  blog will not be of much interest to many of you as I have been on holiday so not really much PH related news to report except for news of Lyz Clements and sadly the death of yet another ph sister.    I made a conscious decision to not be on Facebook too much as my time with friends in Spain was so important to me. 

I do know that the denervation for Keith, our ph brother in America has had to be postponed as he had the flu.  Obviously they need you to be as healthy as possible to get all the correct readings.  He is now scheduled for the 15th March so he is eagerly awaiting that in the hope of lowering his levels in his lungs.  I certainly wish him all the best but know he will be in good hands.

Transplant

Lyz Clements had a nasty shock when a bronch test showed there was an issue with the top of her lung  after transplant.  They are hoping that strong iv antibiotics can help this but to be fair it is now just a waiting game.   I have messaged Lyz today and she tells me that it is a small hole at the top of her right airway to the  joining of her lung. Latest scans show some sign of healing but they are pleased they saw it when they did and a careful eye needs to be kept on this.  It is causing air to leak at the bottom of the lung and this in turn can lead to an infection.  Despite this there is a plan in place for her to go home next week but to return every coupe of days or so to have the progress of this checked out.  A scan of the lung will be done in two weeks in the hope that it is much improved.  Though there is still a way to go for Lyz she is still staying very positive.  She also sends you all her love and said the messages she receives from you have been so lovely and so welcome .  She is a trooper is Lyz and I do hope this setback resolves shortly.  

Sadly another loss

I was so gutted to see when I was on holiday that we lost another ph sister.  This was Janet Ayton who lived in Leeds, West Yorkshire.  I believe she had been quite poorly before her death but this would still have been a shock for her family and friends.  It is desperately sad that we continue to lose our ph brothers and sisters to ph, a very cruel disease.

House

Well how this has moved on.  We now have the roof felted so this hopefully means that we can shortly be in a position to get the contractors in to get the walls done with plaster board , underfloor heating etc.  I do look forward to the day we can actually move in.    

We kept changing our minds about our kitchen and we believed just before we went on holiday that we had got it nailed.  That was not the case as when I was in Spain I decided I wanted to go back to the drawing board yet again!  The problem is, as I have said previously is that it is rather a large kitchen but it has three doors leading of it so getting proper runs is impossible.  We also have a huge corner window to take in the views of the hills so did not want to encroach on this with kitchen cabinets.    However I think I had a light bulb moment (though Colin says it was his! !)  So away he went to his drawing board and came back with a drawing I actually I really  love instead of thinking it would do.  A quick email to my daughter to get her thoughts and she too really likes it so hopefully we have at last got it cracked.  Yes I know I have said it before but this time I have no reservations.  We need to make sure we get the correct granite now and I think we will have a gorgeous kitchen. 

Izzy went into the house just before we went away and climbed the ladder to upstairs.  She was very impressed and we got the seal of approval from her about her bedroom so we are well pleased. Of course the house is still very raw, no plaster board in the rooms, no joinery, no electrics or plumbing but the outline is all there.  Now my task is to find the best lighting for rooms that are not conventional as the roofs have different slopes to them, some are open up to the eaves and some slanted.  It all goes to make for a house design that is different which is what I asked for.  Will have some fun with this. 

Izzy

We are so proud of her as she has again skipped a level in her piano lessons as she is doing remarkably well.  She enjoys her time playing it and even recorded a video playing happy birthday to one of her friends!  She coordinates two hands beautifully and appears to be quite assured when sitting playing. I hope this enthusiasm continues as we may buy one when we move so that grandad and grandaughter  can both play together.  

She did so well skiing this year, such a shock as she really was not on keen to go.  What a difference a year makes and it has shown just how confident she now is.  She did not want to come home as she was loving the slopes and at the end of her holiday was confidently going up the ski lifts  and down the nursery slopes. She was following her mommy like a duckling and we were sent  videos of her and we were so impressed.  

When she arrived home she cried and said she missed her grandma and grandad!  Danielle rang us and we spoke to her and said she could stay the night here on Tuesday  if she wished after swimming lessons.  She was then happy to go to sleep.  We enjoyed a lovely evening with her and she happily went off to school today through the snow after a good nights sleep.  I am so pleased she still wants to spend time with us as I am aware that the passing of time will make a good deal of difference and other things will be  more important in her life so we make the most of what we have.  Though of course she will never stop loving us of that I am sure. 

Enjoying her half day off school due to the bad weather. 

Our holiday

What a joy this was.  It’s was so unexpected too.  I woke in the night a week before we went with the idea I wanted to see our friends  in Javea, Spain where we used to live.  A nudge to my sleepy hubby at 6 in the morning to get his ideas on this.  He was not so keen as he was heavily involved with the house build and felt he had too much to do.    I left it that day but did set about finding us somewhere to stay,  just in case. There were quite a few places where we could use our friends  villas but in the end we opted for a two bed apartment right in the heart of Javea.  It meant that it was all flat and we could move from the Port of Javea, a beautiful place, to the Arenal where there was much to see as the surfers were out in full force or sit and take a coffee looking out to sea and  watching the people walk by.  

We were so blessed with how many friends we managed to get to see.  In total it was 15 as some were away on holiday or about to go on holiday.  We spent leisurely days talking over coffees or having late afternoon meals with our very precious friends.  We are so pleased that the friends we made whilst living in Spain are still in touch with us and  so it was as if it was only yesterday when we had last met and enjoyed each other’s company.  We still miss Javea and said we could not have picked a better place to build our villa.  

We went up to where we used to live and we were fortunate that the gardener was working there that day.  We told him we were the ones that had the villa built and always went to see it when  we were back.  He was lovely and let us in to see the gardens.  Both of us were delighted to see that both the house and gardens had been kept to the high standard it was  when we left it.  The only small difference in the garden was that they had removed some of the fruit trees, the  fig tree, persimmon, nectarine  and pear trees had gone.  It did make sense as they were not there long enough to use the fruit.  They will retire to it in due course.  Our grape  vines, both black and white  so lovingly planted were still there as were the passion fruit, pomegranate  and the oranges and lemons.  They had put a cover over the pool.  We never needed one as the pool was used so often but I get that it was a great option for them.

I did get a pang when we left but life moves on and we cannot hold back time.  Had we continued to live there we would not have seen much of Izzy, the house being built next door to her  would not exist and getting appointments for my ph would have been incredibly hard so the decision to sell was the correct one.  

Sadly all good things have to end.  We needed to return from our holiday as we had appointments to attend and house build to see to.  I did ask Colin if he was happy he had gone and the reply was a resounding yes.  Our home here was lovely and warm and tidy, Lucy had done a great job so we were swiftly landed right back into our busy life here.

I did need two days in bed to recover from our holiday but to me it was very well worth it for all the memories that were made.

Ahhhh

Just got a phone call from a friend so say she was so concerned about me as I had said I was driving into town today to collect my medicines.  She was worried as the snow is really thick today.  I reassured her that all would be well but I am so touched by her concern.  Good friends  are worth their weight in gold 

So there you have it.  Certainly not the most interesting blog for you but I needed to get one out so you did not think I had fallen off the face of the earth.  At least you are up to date with where we are going  with the house over here.  Of course now the snow has arrived so no quite sure if they are in any position to wok inside right now, we shall see.  

Keep warm and keep safe those of you in the UK being hit with the snow.  If you live abroad and are enjoying lovely weather think of us here freezing cold!  Definitely ham shank and pea weather here so i will go out today to buy ingredients.  

Warm love to all and I promise I will try to have more things of interest to tell you in my next blog!!!

Carole xxx

HEARTBREAKING AND SO YOUNG. R.I.P. WILL ACRES

R.I.P. WILL ACRES - The cruelty of PH

With a heavy heart I need inform  you that we lost Will Acres aged 22.  He sadly lost his battle to this awful pulmonary arterial hypertension on the 1st of this month.

Will was only diagnosed in 2016  at Brompton with severe pulmonary arterial hypertension and received amazing care. In the beginning he did really well with the meds and went on to graduate.

He was a D.J. and his earlier story can be found in the Spring Magazine Emphasis, a well loved  young man who enjoyed life to the full.

Sadly  his condition  deteriorated and Will desperately needed a heart and lung transplant.  He was blue lighted to Harefield where he received his  donated heart and lungs, there were many complications for Will and he went on and off the ECMO machine to try to keep him alive.  He had to lose a leg above his knee in an effort to keep him with us.   As his body fought all of this he endured so very much.  Sadly he developed a reaction to the Heparin and had an infection they could not locate.  He endured surgery to remove blood clots and two cardiac arrests.  At one time is seemed he was winning the battle.  He could react to his parents , squeezing hands and blowing kisses through his mask.  Staff did all in their power to help  but it was not to be.  I could tell you much more but to be honest my heart is breaking.  

I have spoken to his mom Lea, who is willing to share this story so we can raise awareness and support for all with this terrible condition.  So we lost a lovely young man, his parents and sister lost their beloved son and brother.  His girlfriend, who was very supportive lost her guy too.  How awful the we still need to endure losses like this.

So with a heavy heart I will put this post to the top of the blog and then share it.  I long for the day  there is no PH.  This post is just so bad and life can be so cruel.

Lyz Clements

Our latest lung transplant patient continues to do well.  This morning she was even doing some admin for the group!  I have to take my hat off to her.  She is on dialysis but that can be normal after transplant so all is great with her recovery and the doctors are very pleased.  It is such a huge thing to undertake, to accept anther persons lungs in the hope it gives a few more years of life.  Sadly with ph that is often the only option available for some.  My hope is that there will become drugs available that will stop total rejection of new lungs forever.  Lungs are the worst organ to transplant successfully as they are open to infections so the person receiving the new lungs has to take a great deal of care to protect their precious gift. Fortunately we have a few n our site that have had successful transplants and are leading wonderful lives.  I feel sure Lyz will have a very successful time pre op and go on to enjoy life to the fullest.   

Medtronic's Synchromed 11 Approved to Pump Remodulin into Veins to Treat PH

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.medgadget.com%2F2018%2F01%2Fmedtronics-synchromed-ii-approved-pump-remodulin-veins-treat-pulmonary-hypertension.html&h=ATMKI8zqluQ2_beuuO5BRHpdhe3Vmvm9XoxKEkNW1CJRhR3JfMJQJdAURw2Eqs5AsvJVOlqqau8ijtR5cHgmO2zFWaY6raBJyBdHe6TVXIhmCL8T3H6_i0ZGBbFfM557pxj2swxv_SxfFQvRwQ&s=1&enc=AZNGrjN1m1I-HfZtKY_rEs1H-kmT1miTpDLd_OOXUW9duyybuY0diO9LbnhaBIDV2Bc

I am not sure how long this will be before being used at last for those on the pump.  Once it has FDA approval as this has, I pray the powers that be get on with putting it out there to be available to the patients.  Too often we read horror stories of how  the pump has had to be moved and the pain the comes for days with a new site.  I fortunately never had this, I had the IV meds but that itself could lead to many complications due to infections.  In the world of ph please spare a thought for those that have to be on either  or these pumps and pray that this new way to deliver meds can be offered to our ph brothers and sisters sooner rather than later.  

A skeleton arises

This skeleton is our new house.  At last rising like a skeleton from the bowels of the earth it is reaching its arms to the sky to embrace the world.  It has taken its time but we see so much progress now.  Alas though just as we thought we were close to the roof being fitted of course the snow is predicted to come down!  Though in fairness the lads work through the most horrendous weather if the temperature drops too low they cannot, the cement would not set.  Our weather men are saying this month is going to be really bad, really cold.  I am hoping that as so often it happens here that it passes over us.  Being in the valley as we are it often does.  Once again we play the waiting game.

Kitchen is sorted at last, fire sorted and the heat exchange system we need to keep the house fresh all the time is well on the way to being understood too so the fitting should not be too onerous.  It is beginning to get exciting now as we can se the rooms and actually walk on the upper floor, if wearing a hard hat and a viz jacket, I have not done so as it means i would have to climb a ladder.  Hoping to see great progress when we return from our  holiday.

Holiday

Yes we did it.  We have booked a flight for Friday and we will return to our beloved Javea in Spain to meet up with our friends and some family.  Colin will get a few walks in.  Sadly we will have missed by two days the lovely walk called appropriately The Almond Walk. I know I have posted here before about this walk.  This was the last walk I ever attempted before diagnosis.  I love this walk and I tried, I really did to keep up.  It became apparent even before we walked up a slope that it was not to be as blood came into my mouth and each steep was so very difficult.  I was sick in the hedge, a bloody foamy mess and I knew that we needed to look further to a diagnosis of my problem.  We aborted the walk. 

Sadly it was to take still another five months and a lot of heartache and wondering before I saw the doctor that diagnosed me.  We still keep in touch now as I owe him so much. Today I am going to buy him a really nice tie and take it to him when I return to Spain.  Last time I saw him we took him a really good bottle of whiskey but it turns out he does not drink.  As a doctor he will have many occasions when he will need to wear ties so it seems a good option.  So that will be my "to do thing" today.  

We are having 15 nights so no excuses to not see as many people as we know.  I am so excited but of course first comes he worst part of travelling, the dreaded packing.   I am tired just thinking about it.  We do not take much as we always go where there is a washer.  Easier than carrying loads of suff to see us through our 15 night holiday.  Always there is the thought in the back of our minds of how I will be, how will the plane journey go, the transfer through the airport.  To be honest we hate it, we hate all about travel but we do know the end result will be worth it.  

The big plus in this is that our cleaner, Lucy is more than happy to move into our place for the length of time we are away.  I know we will return to a house bottomed ready for the spring.  She has told  me  that she will go through all cupboards etc with a fine tooth comb.  We are truly blessed! 

So blessed

Izzy and I were dropped off at the door yesterday as Colin had a job to do.  No problem except we saw our Helle Fresh box waiting for us.  This box only contained three meals but they are heavy.  I was not sure how I  would get it into the kitchen but I need not have worried.  As I was picking up Izzy's coat, flung with wild abandon onto the hall floor and taking off my own she disappeared into the kitchen pushing the box ahead of her.  Ah so sweet so she got off without a telling of about hanging up her coat.  Clever girl.  When I got into the kitchen the box was not only in there but she had pulled a chair out from the table and lifted the box onto it in her attempt to get it on to the kitchen  top.  Top marks for thinking ahead.  She struggled though to lift it all the way to the top so we saved that until we emptied the box. I hugged her for her help and she old me the she loved me ad that she kew i could not lift heavy things so in future I must leave them all to her!.

 I asked her which two her mommy should have {we mostly get five and my daughter pays for and takes  two but due to holiday we were only having one}  She looked at the pictures of the three meals and pointed to the two she wanted her mommy and Chris to have.  She said "they will have those two because they eat too much and the meals do not look too big"!  I must confess I laughed.  I need to point out neither her mommy or Chris are over large so not sure where it came from but anything that causes a smile is good. 

Since writing the blog I have added the sad news about Will Acres so this time I leave you all with a heavy heart.  I know you will send much love to the family of Will.  I am sorry to leave this blog on such an un happy note but Will deserves our thoughts and his family our love.

Carole xxx