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