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

AMAZING NEWS FOR MY DENERVATION FOR PULMONARY HYPERTENSION

Home again after a three day stint at the hospital for the final testing since my denervation, excluding a few follow on telephone calls.  So in the space of a year my pressures  have dropped quite well and my blood flow has improved marginally.   Any improvement, drop etc is great news for those suffering with PAH and this could just be the procedure to push back those numbers in our lungs.

I can't speak for anyone else as to how they are doing but for me I have to say having had this done it has been a success.  The truth is we have no way of knowing if they will continue to drop since the small bronchi that caused a lot of the pressures have been damaged.   Deliberately of course to try to stem the rising pressures.  As we are not very long into this procedure, (actually only 13 done so far as opposed to the 15 I thought) it is early days but we can hope that this proves to be a game changer.  I feel blessed to have been one that was able to participate in this vital research and I pray it continues.  

I know that this procedure is now being done in America and my doctor that performed it here is carrying on the work over there.  Trust me if you are offered this have no fears.  The procedure itself, though it sounds daunting is really not and the end result may quite well be similar to mine.  Nobody can say at this stage that it will work for all but maybe you give it a go!!  I await with you all the day we can say we USED to have pulmonary hypertension 

One lovely thing was when I was waiting to go into the theatre for my extended right heart cath was that I once more saw Dan, he was the nurse that took such good care of me both in the theatre working with the team and afterwards in the after care.  I have seen him each time I have gone back to Northern General and it was great to catch up with how things were.  When I  was being wheeled out of theatre I said to the gentleman pushing me I really needed to see Dan as I wanted to tell him my pressures had dropped, I knew he would be thrilled.  How blessed I was that once again he had swapped patients and took care of me.  We with ph are truly blessed with the people that care for us.  

Back at the hotel I was obviously elated so I rested for quite a while and then we went out for a nice meal to celebrate.  It did not take long for me to drain of all energy which surprised me but I think sometimes even good news can tire us out! 

Monday was my MRI date and so I expected it to be a rather long laborious time in the machine.  I have no fears of them but I just knew I wanted to get home as I have so much to do!  Actually it did not take too long and tacked onto the end was another bit that was actually something they needed to begin another trial, not one I am to be involved in but they just needed a willing patient!  

I managed to get up onto M2 to meet up with Lucy Smith who is to  begin to change over to inhaled medicines as she has had many problems with the iv line.  She looked to be in high spirit though missing her children very much.  Sadly I could not spend long as I needed to get off but once agin I have put a face to the name of one of my ph sisters which is always lovely.

Phil Marshall

I am sure most of you like us here were glued to the little blue dot with the number 182 on it as we watched Phil run over six days and nights to raise money for the ph charity.  His aim was to raise £3000 but this was soon smashed and it rose to £5000 which was his new total.  Even as he began his run he could have had no idea as to how enthralled we all were with what he was doing.  This was no normal marathon, no this was a run across the spine of England, one of the most brutal races in the world, in the worst weather conditions and the race was 268 miles!!!  All of this for us because his lovely wife Sarah has pah and is awaiting a heart and lung transplant.  Well he has almost reached £10000  yes ten thousand pounds!  Mind you this was so enthralling  and most of us sat watching the blue dot with tears in our eyes as we saw just how hard this race was.  I know myself and Helen, another ph sister were messaging each other in the middle of the night whilst watching how he was doing. We saw people dropping out like flies as the going got way too tough for even the hardiest of souls who had completed this race before.  At once stage I must confess I even willed him to stop as he was racing in waist deep snow drifts and with sickness and diarrhea and my heart wept for him.  Did he give in, not on your life, he battled on through all the weather threw at him, all the tummy bugs he coped with and with jubilation we saw the blue dot reach the end!!!!!  Words cannot really explain the awe in which we hold this young man in.  I hope the donations reach to the £10000 mark, he truly deserves every penny raised for our Pulmonary Hypertension Support Group. 

Steph Ingram

We were all wondering and worrying about Steph as we had heard very little since she had her lung transplant before Christmas  Fortunately we now know that the lungs have taken well.  Steph needed a few bronchopys { wrong spelling } and a tracheotomy but now is coming on great.  She has lost an awful to of weight so an aim is to get some of this back.  Right now she is still residing in critical care but at last things look to be on the up for her.  This news was met with relief all around for many of us who have been waiting with bated breath for news.  Of course she has just been too ill to post, she did not forget us and our support is helping her enormously to cope with all that a transplant throws at the recipient.  We all wish her well and now things are moving forward a speedy recovery.

Skiing and buffs

We bought Izzy a new buff ready for her skiing holiday next month.  She absolutely loves being able to do all the various things with just a twist of the material here, a tuck there.  The one she hates and says she will NEVER use is the ones that goes over her head and sits beneath her chin.  She says she looks like and old woman but was quick to follow that up with "but not like you grandma"  Thank goodness for that.  Though now knocking on in years I do not want to look like the grandmas we had in the 50's.  

So once again she will shortly be heading off for her annual skiing holiday.   Though she goes reluctantly cos she is lazy she actually loves it when she moves on with her skiing and her and Harrison talk about their day when they all meet up after their lessons.

A holiday she is looking forward to though is one with her Nanna Joy and Harrison.  Joy is taking them both to Centre Parks and it is one we have taken her to before so she will remember so much of it and will look forward in particular to the slides in the pools. She tells me they have added another slide so she will be in her element.  I think it is so lovely of Joy to take them both together but brave at the same time, I have got out of the habit of looking after two little ones together.  I look forward to hearing their news on their return.  

So I will leave this blog now as I want to get if out today. and I want to go down and see how our house build is getting along. At least we are almost at the end of choosing our kitchen!   Love to you all and once again please comment or at least click the like button so I know you are interested!!  

Warm love

Carole xxxx

SO I MIGHT GET ANOTHER YEAR TO LIVE

Apparently I MIGHT get another year to live!!!!!

No this is not a doctors advice to me at all, no statement as to the longevity of my life.  This was a statement told to me by my granddaughter Izzy.  I have had a lot of nosebleeds, 7 in one particular day and they were not tiny ones, well at least five of them were not.  She takes all this in her stride as she has lived all her life with me having ph and all it entails.  However I  had to smile at her latest remark  to me.  I was in bed with the sick bowl and blood dripping merrily into it through all the tissues I had stuck up my nose, I had run out of tampons that I plug my nose with generally as as I had had such a run on nosebleeds.  She came into the bedroom and calmly told me to rest.  She said "rest now grandma and you might get another year of me, then with a shrug of her shoulders she followed that up with "but you might not" and blithely ran out of the room to see grandad!!! 

We have always been honest with her with regard to my illness and she takes it all in her stride.  I hope she is wrong and that I have many years to live, that the cure is found for EACH AND EVERYONE OF US, we certainly all deserve it.

Thank you Jayne Venables for this.

Opening my computer this morning I saw this old post from Jayne.  I have no idea who wrote it in the first place but for any ph fighter it is a very profound piece of work.  I wanted to share it with you, it deserves to be seen by as many as possible.

"What It's Really Like to be Chronically Ill

Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.

I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.

Being sick isn’t as glamorous as they make it out to be in the movies. And unlike cancer perks, there are no “chronic illness perks.” Except maybe those really good lollipops at the doctor’s office. Those are definitely a perk.

The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?

The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?

Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.

There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal.

I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.

You learn to love every good second, every good minute, of any of those few good days you might have. You don’t fear death because you’ve already stared it straight in the face quite a few times. You know it’s not important to dwell on the little things. You have more important things to worry about.

So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular teenager.

Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end."

Denervation news

As many of you know I was the 8th person out of 15 worldwide to have a procedure called Denervation. . This is with the hope that it lowers the pressures in my lungs  If it proves to be a success it may become another procedure to help us all to live longer whilst fighting ph.   At the last testing it had lowered slightly by 6.  Now my appointment has arrived for the final MRI and Right Heart Cath.  

 The denervation watch has arrived, (I need to wear it two weeks before my tests so it will be interesting to see how the results are. This watch monitors so much of what is happening in my body.  I cannot see any of this.  After two weeks the results are downloaded and sent off to Israel,  It was Israel who came up with the idea and it is them that pay for all costs relating to this procedure. To be honest I have not been the best these past few weeks so I am not expecting amazing result.  This is sad as I so wanted it to be another option for lowering the levels in our lungs.  Anyway I should not jump the gun and we will see what we will see.

Alex ( the Doctor who carried out the procedure) is currently in America but will fly home in time to do the right heart cath.  There has been a great deal of difficulty getting theatre time and MRI time so I believe my right heart cath is at 7.00 a.m. on Monday the 22nd January.  This means an overnight stay at a hotel on the Sunday and Monday. Sunday we will do all the usual things, bloods, walk test etc so I am ready on the Monday for the cath.  Tuesday I am having my MRI and then after talking with Alex it is home and the end of any more testing for denervation, though I believe they will follow up for two years with phone calls.

I am looking ahead  to my next rial.  Not sure which one et though I have been in touch with one of our specialists who has always hoped to trial one this year.  I have asked him how far off he thinks his is, can I get another one in before his goes to fruition, we shall see.

Update on that.  Nick who is hoping to trial a new drug said it will be another 1 to 2 years before it is ready to trial so said I have time to get another trial in!  Hey ho here we go hopefully.  

Count your blessings

How easy it would be to go into another year with our hearts downcast at the life we now lead with ph.  However I feel sure each and everyone of us have some things in our lives to count as blessings.  I know I have many and when I am feeling downcast because of the things I can no longer do I sit and count my blessings for the life I do have.  I could have lost the last seven years of my life without my amazing A Team who have taken such good care of me, without the research always going on etc.  So I have much to be thankful for, seeing Izzy growing up, my daughter getting engaged to a guy I really love and my son so happy with his gorgeous girl.  All of these came since I was diagnosed.

We did not do anything much to mark 2018 but we were invited down to our friend's house and cabin  There were six of us in total and we had cheese and biscuits, mince pies etc and of course champagne to mark the beginning of the new year.  It does not take much to make me happy at all, just small delights now, just enough for me to cope with.  Nights at the theatre are long gone as they are too late for me and certainly I can no longer  travel too far to enjoy the lovely musicals I enjoy so much.  So just the small things make me happy to be alive.  I count my blessings every day for sure. 

Flu

This is getting scary really.  It has now been seen in almost every part of the UK, though strangely enough not in London.  We are being advised not to shake hands, operations have been cancelled and doctors are working flat out to try to manage the demand after being told to keep patients out of hospital if they possibly can.  After suffering flu once when I was healthy I cannot bear to think of the consequences if I was to come down with this now.  I lost a good fried, a previously healthy 34 year old man to flue around 30 years ago.

I have given Izzy her own little pot of hand sanitiser which is supposed to kill all germs of up to two hours, I also told her to rub a little under her nose.  No idea if it can help to stop bacteria going up her nose but I will try anything.  Our mouths are a different thing entirely.  Yes I always knew it would be scary when we were first told about it but now seeing the facts laid out before us of even the young, fit and healthy succumbing to this dreadful disease I am even more aware than ever of trying to stay away from bunches of people than ever.

At my church yesterday I told them  would not be attending for the next two weeks.  If I get something like this then the testing of the denervation will be off and so many people are involved I would hate  the careful planning to go to waste.  I pray you all keep safe from this, take all precautions necessary and dodge a bullet.

Trump and Kim

I am not getting involved with any of this except to say GROW UP.  To read and see the headlines on the television where they are trying to outdo each other with the size of their nuclear weapons is so awful..  "Mine is bigger than yours" is a line Trump has used.  I think it is so scary to have two power hungry people in charge of a button that can kill so many.  We are way off living in a world of peace and harmony I know but I sill think it is so sad that we cannot get on together, that the world is filled with wars, starvation, despair and all the rest.

Periwinkle Candle

Over the last two weeks we have seen this candle a few times.  It depicts the death of another ph brother or  sister.  Lost to an illness that hits us and gives no mercy, young and old alike, the fit and the healthy, struck down in an instant with a deadly disease that slowly builds its way up to a crescendo with the end result being the candle we all recognise. My heart goes out to each and every family that has lost a loved one to this disease, all keep phighting and maybe we can find a cure in 2018.  

House build

No work has been done over the Christmas and New Year period but it begins again today.  We are on our way down to see the site and to take delivery of our one and only appliance for the kitchen our new dishwasher!  I will keep you updated when we get a bit further.

Now I have to get off this computer, Colin has so much work to do with regards to the new house he is being hampered by me!!

I bid you all goodbye and I wish you warm love.  Please please if you like what you read then click the look button or comment.  it really maters so much.

Thank you so much

Carole xxxxx

DEDICATED TO THE MEMORY OF WOLF STANLEY - OUR PH BROTHER

Wolf Stanley

As many of you will have seen Wolf Stanley is in the last stages of his ph illness.  I believe he said initialy they were stopping treatment today.  What an amazing young man he is.  He wants us all to know how loved he felt by us, how our posts encouraged him and the support meant so much.  He too in turn was supportive to many of us.  He was to write a book telling of our stores about Pulmonary Hypertension.  Some of his last words on his video to us were that he was sorry he never got to write the book.  Today as I write this he is safe in the arms of his family.  His little girl should be with him too so I pray that brings him some peace.  It goes without saying that he is a guy who will be sorely missed.  He said he was shocked at just how much love was sent his way when he posted his video.  He should not have been shocked, when we need somebody we are generally all there for each other.

Since writing that post we have sadly lost Wolf, here is a Video he wanted to share with his PH brothers and sisters.

https://www.facebook.com/wolf.stanley.833/videos/10214340497363459/

I am gutted  that I missed a video call from him.  When I got back to him 18 minutes later there was no reply.  I will always regret that missed call.

Go well now Wolf wherever your journey takes you.  You take with you so much love.  xxx

Remember to cherish the ones you love.  Wolf had been doing really well, even asked us for our stories for the book he hoped to write, and then, almost without warning he was so desperately ill.  We cannot take anything for granted with ph. 

People without ph, except those dealing with us daily have no conception that the ph and/or the meds also can destroy our organs over time, the medicines are so toxic for our bodies, causing liver damage, organ failure and many side effects.  What is the answer!  There isn't one, we have no choice but to take the meds and hope for he best, hope for another day, week, month, year.

Christmas is over for another year.    

My Christmas Eve was so nice spent with lovely friends.  Though it meant an early to bed for me I was blessed to have the time I did with all of these lovely people. 

I know that sadly we lost a ph sister on Christmas Day and that another ph patient was admitted to hospital on that day.  Ph is relentless.  It does not stop and let us have a decent day, it does not think, "oh they deal with so much throughout the year let's give them a day off from ph".  Sadly it just continues its way with us.  Many of us will have been able to enjoy the company of family and friends but will now be paying the price.  It can take us days to recover from activities or just the sheer effort of speaking to our friends for what is actually too long for us. 

I was so spoilt this Christmas and received really thoughtful gifts.  Pyjamas from Ted Baker,  they are gorgeous it seems such a shame to wear them! A lovely new wheat bag for the pain in my shoulder and neck and some beautiful soap, the best I have ever had that made me feel so decadent when using it.  Plus so much more.  I realise how very fortunate I am and that family take into account my needs when buying me gifts.  

Though my Christmas was nice it was marred by an awful event, it ruined part of Christmas day but we do what we know how to do best, we just climb out of the pit and get on with it.  What we need do  now of course is to conserve our strength for the New Year, if you are looking to celebrate it. I personally I do not since my parents both died, I will be in bed, maybe seeing the celebrations going on around Trafalger Square etc.  Wherever you are or whatever you are doing I wish you a great 2018 and I go into it with the hope of more trials and maybe a cure on the horizon.

New Trial ahead

For those of you on treprostinil, a therapy that is painful for you they are now looking at a different form of treatment.  It was in the Pulmonary Hypertension News.  It might be of interest to you though it is in fairness only at the beginning stages of trialling.  I have put the link here so that you can check it out if you have not already done so.

https://pulmonaryhypertensionnews.com/2017/12/22/pulmonary-arterial-hypertension-cam2043-phase-1-clinical-trial-underway/?utm_source=PH&utm_campaign=06f3ad89eb-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_fd7f2e1d35-06f3ad89eb-71490805

I am also adding a link from another of the wonderful PH News items we receive from America. This is a ph sister who shares her frustration of people thinking she is well as she looks good.  Maybe you copy  the page and show it to people who firmly believe you are not poorly at all.

https://pulmonaryhypertensionnews.com/2017/12/22/pulmonary-hypertension-physical-appearance-is-an-illusion-normal/?utm_source=PH&utm_campaign=2ac6f3d921-RSS_WEDNESDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_fd7f2e1d35-2ac6f3d921-71490805

Tooth Extraction and pain injections

The went really well, better than myself or my dentist expected.  My mouth did not feel sore afterwards and all is great.  I can now eat anything I want to do again, oh joy.

My pain injections for my neck did not work at all sadly.  I rang the pain clinic today to report this and they will get back to me next week when my Doctor is back at the hospital.  Hoping I do not have to wait too long to get more and of course hope for a better result.  

Really!  But he got a result. 

We went to the sales yesterday  I looked at the kitchen appliances at John Lewis and though we are not in a position to buy anything yet the guy seemed to take a shine to me.  In fact he actually said he would lower a price cos he liked me!  I think it was a bit of  clever marketing really! However I did come away with an AEG dishwasher at a really good price. This will sit in our neighbours garage now until we are ready for it, fortunately they are family.  

As we head off into 2018, a new year ahead for us all,  quite what it will bring we cannot know.  I know my hope is for a cure, as it always is.  Cures are found for many things and I still firmly believe ours is not far away.  

Enjoy seeing in the New Year if you are able to stay awake.  Take care and take my love with you. 

Carole xxx

PS - A picture of our Park today - Winter Wonderland.

DO NOT D0 THIS WITHOUT YOUR DOCTORS APPROVAL

I read a post from a ph patient who decided to cut her meds in half.  Please do not attempt this without talking to your doctor.   There is a really good reason why.  My doctor told me  coating on the tablets are there for a very good reason.  They help the tablet to release the medicines as we need them, not in one big belt.  if you cut the tablet you are leaving a part of the medicine open to release all the meds in one big hit.  This truly could harm you. Trust your doctors.  They decide how much we need.  If they decide to reduce your meds it will be done in a controlled way and the new lower dose medicine will be delivered to you in the correct dosage. I think the person who was cutting her tablets in half was struggling to afford them. We are fortunate here in the U.K. to not have to deal with this worry..   We are fighting a huge battle as it is, don't make the problem harder by playing Russian roulette with your medicines .  I believe children are given medicines for ph crushed so not sure how that works but for me I am told not to do this. Maybe for those of us on the biggest dose of viagara it can be harmful. 

A really bad day

Yes today I am broken, I do not know why.  I woke to a "normal" day but it was not to be a good day.  I searched the computer for the latest blog I am writing to Izzy.  I knew there were quite a few pages of things we had done together in this latest one.  I appeared to have lost it and as Colin searched for it I broke into a thousand pieces.  I cried and cried.  Colin held me and said all would be well but I knew I was not just crying for the lost blog, though I hated to lose the memories we had shared.  I was being selfish and crying for me.  I try to be strong, I really do and generally I am.  I am positive and even with all this crying I am still am but the damn had broken, the tears would not stop.  

I knew I was crying for my parents and brother who have died, I so need them right now, for their strength to help me cope with pah. I was crying for my family I no longer have, for the friends that stopped being supportive when I had to keep saying no to events I used to manage easily.  I cried for all those we have lost to ph, they are never forgotten.  Oh I just cried and cried.  Ridiculous as I am generally so strong.  Something broke in losing the blog, something crashed into a thousand pieces.  The pieces will mend, of course they will and just as we can fix a special broken cup with glue I too will mend, I do know that  but right now feel I will never be quite the same again.  The cracks will show, no matter how much I try to paste over them. 

Maybe I am tired, we did have a meal out with 14 of our lovely friends last night so hopefully it is just that pushing me over the edge.  I hope so as I would hate to lose the optimism I have for the future, hate to be forever in a dark place.  So to that end I will cry it out and push it away.  Hopefully to not cry again for a long time.  Not that I am ashamed of tears.  I always say we need to use them from time to time.  Why did god give us tears if we were never to be used.    So use them  I will today and then put all of this behind me, hopefully to wake up to a new day dawning where I have all my positivity back, my faith in the future and new beginnings.

Oh and by the way, Colin found the blog and I completed it so it went in her memory box with the other 86!  Result. 

I think my husband is trying to kill me

Colin actually is a super star and does all the cooking.  I always did it until ph raised its ugly head but actually he enjoys it and does a great job.  However one thing I just can't seem to get across to him is I really should not take too much salt.  I can't see me living a life with no salt in my diet at all but we are fortunate that all our meals are home cooked.  We know exactly what goes into them unlike processed foods  which often are loaded with salt.  I am happy for him to put a little salt when cooking veg and for seasoning when cooking BUT I do NOT want salt on my meal when it is cooked and ready for eating.  However I can hear him grinding the salt and pepper over our cooked meals.  I keep telling him and telling him it will kill me.  The following day we go through the same process again!  Should I read something into this. Does he has an ulterior motive?  Anyway I think I have got the message across at last, we will see. 

Do you have one of these

If you have one of those Medic Alert bracelets like or similar to the one I have there is something you should remember to have recorded.  As we were filling in my form for any changes to my condition or meds this past year I remembered this.  People with pah really should be very wary of being given nitroglycerin if taken to the A and E Department.  Our meds already widen all our arteries and nitroglycerin does the same. The result could be an overload.  So be very careful.. We have added it to our list so that should I ever be taken poorly and my medic alert bracelet comes into play they have all the correct details, it just could save your life.  Mine says under no circumstances must I be given nitroglycerin, maybe you should think about adding it to yours.

Transplant News

Steph Ingram had a lung transplant last Saturday.  The news was that all went well.  We have not heard anything since then but we all hope it continues to go well for Steph and she can begin to enjoy a new life.

Lyz Clements - Well what a Topsy Turvey week she has had with three calls for new lungs in a week only to have them show to be of no use to her.  As she is at the top of the transplant list along with about another two I feel sure it will not be long now.  Of course our hearts go out to the ones who donated organs.  Such a hard thing to do.  Everyone who is waiting for organs I hope you hang on, I hope your time comes.  I can't say soon because that of course means another death.  Gosh how awful all of this is.  

So many lovely things

Ahead of us are many delights to look forward to.  Meals out with friends, always lots of fun, a weekend away with Izzy and two of our friends and their two grandchildren, Christmas day with the family and boxing day with family too, though this time at Danielle and Chris's place.  Pantomimes and festive fun, all on the agenda.  { I actually don't see the panto as there are too many steps to deal with but still happy times for family}  For healthy people there is just the nice thoughts of all ahead.  For those of us phighting ph we have to remember to rest, rest and rest between each and every event.    If we overdose on things it can knock us back for days at a time so remember, take it easy and get your feet up whenever you can do. 

House news

Well it is growing for sure, in fact they are beginning to put in the earth wool that is used to insulate the house.  As it is an eco house we of course want to use eco friendly insulation and this is one of them.. Sadly as the weather changes so will the time being spent on our house become less and less.  The builders take two weeks off at Christmas and the New Year so again all things stop.  The hoped for roof on before the end of November won't even happen before the end of December but at least we can see progress each and every time we visit the site.   Cant wait to be in and getting sorted.  Seems such a long way off yet though.

Emphasis Magazine

I received mine yesterday and I just need to say a heads up to all who contributed to this wonderful magazine and to the ones who made it possible.  We always find so many things of interest.  We have articles from our ph family and we always have the latest updates on what is happening with some of our medical professionals.  It is always put together so beautifully and is so looked forward to each and every time a new one is due out.  Well done for everyone connected with it in any way.

I wrote this blog a few days ago. fortunately I am feeling much more upbeat, don't know quite what happened to push me so low.  We are going to see our Izzy in her play this afternoon.  Looking forward to seeing her with a beard!

Go well everyone.  It is so lovely when you take the time to comment or click like, it really is.  Sometimes writing a blog is hard but when I see the response it makes it all so worthwhile. It is a great way to stay connected to you all and that is so important to me.

Oh just an add on.  The Porter Crest of which I had asked for from the family to complete my family tree has turned up and it was left outside my door for me.  I can't tell you how pleased I am to complete the project I worked so very hard on.

Right, so now my day begins.  Hope yours all go well and that in the lead up to the festivities you remember to rest.

Warm love

Carole xxx

  

DIDN"T WE DO WELL TEAM PH!!!!

PH Brothers and Sisters Unite

Many thanks to all of those that contributed to the raising awareness of ph campaign going on right now.  Each time I open up my computer I see posts, blogs, awareness posters etc about our fight to get this seen as the terrible rare illness ph is.    Worldwide they just keep flooding in.  How amazing and it proves we work so well as a team.  Together we went into the month of November with a determination to try to raise awareness for this little known disease and I think we smashed it.  I am so proud to belong to such a group of amazing, resilient people with such a phighting spirit.  

Please ignore the videos and clippings below most of you as I know you have seen my bit of raising awareness. I am putting them in for those that didn't.  I was very fortunate to have been asked by the PHA Association to do my bit and Mary Ferguson was assigned to the case!  She came armed with her video and her writing pad, plus her recorder.  How easy it all was.  It was just like talking to a really good friend, somebody I had known for a long time.  She made it all so easy to talk about ph and afterwards did a really good job of editing it. 

https://youtu.be/37ujQPEmhQo

https://youtu.be/wvizOC0sB4c

Link from my Friend Tess: -

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fembed%2F-1RvPZhf24I&h=ATN0TwDtq-vfDdAuq91kkcaQYPo1uWXVZQbU7jotTm1AJxFoC00fTy2kvGHqESnGQM_nBJ8y0-U76y6YaVr02kObHGl9b8nmI35zXKZh1K7ZXJS4j5cvWvn6lsssZgDX8rYYE_uujNvQ_Id1

Izzy was thrilled to be in the Courier and the Yorkshire Post, plus Brighouse Echo.  In fact she felt quite the celebrity when she went to school and many of her fellow school mates kept telling her she had been in the paper. 

https://www.halifaxcourier.co.uk/news/living-with-disease-that-leaves-halifax-grandmother-carole-struggling-to-breathe-1-8860762

Her form teacher asked her if she knew she was too.  She came to be in the picture with me as Mary, quite rightly said it was evident that Izzy played a huge part in m determination to push back ph, to keep going for her sake.  Mary was so right, I make goals and milestones to reach with her and then keep pushing back these goal posts, moving ever forward in life with her.

I was pleased though that my illness had been picked up by the school as on the days I just do not want to drive to school and for whatever reason I am taking grandads place in collecting her my mobility scooter comes into play.  I did wonder if people in the school playground just thought 'i was using it as a fun thing for Izzy to ride home on!  Now hopefully they can see that this piece of kit is an essential part of my life.  Though I love it when I do not see it for weeks I also love the fact it sits there, a sturdy, trusty steed to take me where I need to go on the days it is needed. 

Where will I be headed next

It wont be long until my first year post denervation is up and I will be free to begin another trial.  I know that the one I hoped to trial is not yet ready so just what will I do next?  I am looking forward to talking to my specialists and discussing what is in the pipeline.  It may well be that for a few months I just cruise along with my ph until the one I really have been hoping to trial comes to fruition or it may be that I meet the criteria for a different one.  We will see but you can be sure I am ready and waiting to see where my next journey with ph takes me. 

Just love this place

A couple of weeks ago I was at my usual haunt, between the river and the canal.  This tiny village  is called Copley. about half a mile from my home. This is a beautiful place, cottages that look tiny outside but are deceptive and prove to be large inside.  Lovely neat gardens.  The houses there today were built in 1847 when the Akroyd family moved their worsted mill to the site and the model village was built all around it.  The mill is long gone but the cottages remain and outside have not changed their appearance since the day they were built.  

Lying in the valley this place has so much history.  The first Copley Hall was erected as early as 1050 and then was rebuilt by Sir Henry Savile in 1421.  

I know some of you love a good ghost story so look up on google Ghosts and Legends of the Lower Calder Valley, or just look up the history of Copley, Halifax.  it really is fascinating. 

Anyway for two years I had been unable to get across the river due to it being swept away in the floods.  At last it has been reconstructed and I was able to go over it and take pictures of this tiny toll house at the side of the river.  I  was so pleased to see it had remained intact.  I love the sign that still exists about the cost of taking over the bridge sheep, cows etc .  These animals would have crossed the river and clambered up the steep bank to the top of the valley and would then have been free to roam on Norland Moor. { I think the best bilberries ever are to be found on these moors.  I myself spent many hours with my family picking these tiny berries and taking them home to our mom who I knew would turn these delightful fruits into the nicest pies ever. } So I managed to get a picture of the toll house and thought some of you in America would like to see it as I know well how you love history.  

The sad demise of Hammy

Hammy is, or was the hamster of Izzy.  A much loved animal she was treated to a palatial home and many toy and treats.  Nobody could have taken better care of her and she lived a little longer than the expected two years.  We all knew the end could not be far off as the deterioration in her was plain to see.  She was losing her fur and she walked very slowly and, it seemed painfully.  It got to the point where she could not walk to her water and so my daughter put the water right in front of her.  Izzy watched all of this with dread.  She loved her Hammy and was dreading the day she would no longer be part of this world.  We had spoken to Izzy on the telephone the evening before and asked her how Hammy was.  Her answer was that she was clearly getting worse but that she was "all right"  The following day was a different matter.

She turned up here as we were having her for the day with tears in her eyes.  Her mommy had just told her that sadly Hammy had died in the night.  The tears were very real for a beloved pet.  We sat around the table and discussed what was the last thing we could do for Hammy and of course the answer was a funeral.  We talked to Izzy about the inevitable fact that living creatures all die.  So with respect we drew pictures of Hammy living her happy life rolling around the floor in her ball and crawling through her tunnels in her huge cage.  She wrote to her about the pleasure she had every time she saw her and then the last thing  needed was to make a cross ready for her burial today.  I found the perfect twig, long and straight and grandad washed it and broke it in the appropriate place so he had two sicks to fashion into a cross.  Out came the twine and a super cross was formed.  Now all it takes is something that will disintegrate when in the ground quickly to wrap her in and a few soft words spoken over the site where she will be laid to rest later today.    

Its a lesson learnt.  It hurts when somebody or some creature we love dies, how well we know this but at 7 this is the first time she has really experienced a beloved pet leaving this life.  I think between us all we dealt with this pain very well and I hope it helps her in the future when she suffers other inevitable losses.  

Horrible

I had a dream.  We all dream don't we.  I generally remember mine, I always have done even as a small child. in this dream I know I was trying hard to breath, I was looking at a pictures with somebody, I think it was my mom and I just couldn't get my breathe.  Struggling hard I woke up and for just a split second thought "gosh what a horrible dream".  It was then I realised the reality, that my dream was in actual fact my living nightmare.  I DO struggle with my breathing and it is in fact getting harder some days.  I woke in the middle of the night to terrible pains in my right lung, scary.  Other days I don't notice it so much.  It brought back a memory of my dad who woke to a dream in which my elder brother died.  For a split second my dad thought what a horrible dream he had then realised it had in fact been born out of reality as we had lost our brother.  

I know I am pretty fortunate that right now I do not take any supplemental oxygen except for when I am flying but I also realise that my day will come.  Right now I am getting more short of breath very easily.  I do then test my oxygen levels and they are ok, my heart rate rises, as does everyones but it then drops down as it should so it puzzles me.  I tire more easily, Colin sees this so easily in my face and I am afraid my bed calls me so much more than it used to do.  Once I rest on the bed though I  do  not sleep, in fact I sleep for only a short period of time in the night too. So quite what is happening,  just  what is going on inside my body I do not know.  Time will tell, we shall see.  In the meantime I try to continue to be as busy as I can be within my limits.  I refuse to give in to this illness though I do pay the price for being so determined sometimes, as indeed we all do.  

The last two weeks have been taken up with hospital appointments for bloods, physiotherapy for my ankle and the dentist.  Though my dentist and I were hoping to save one of my teeth it has sadly cracked and it needs to come out.  I hate the thought of this.  No I am not bothered about pain etc but just the though of losing a tooth.  All because I bit on some uncooked rice when on holiday in Scotland!  The consequences of that has led  me to an appointment on the 18th December to pull the said tooth.  Three appointments I have had to try to sort this out.  Antibiotics were put into the root of the tooth to try to stop an infecion, this worked but sadly the tooth just kept cracking more and more until we have reached the end.  I can't have it capped due to it being cracked so I have to have it removed and a false one on a plate!  How I hate the thought and for a few days, well only three I will be without a tooth and no plate.  I will not be venturing far from home then I can assure you. 

House news

Despite the weather it is certainly growing!  We now have clear indications of each room and it grows daily.  The dry stone wall we had straightened looks really good, I am so pleased with the end result though disappointed in the guy that did it.  He worked hard and diligently until the final day when he rang and asked to be collected to go home.  We were rather shocked to see that for half the wall he had not put back the coping stones, the vital part that holds the wall together!  He said we needed to buy more though it was obvious to Colin that there were some scattered around the detritus he left behind. A good workman clears up after himself but Mick certainly did not.  however we let him go and Colin went to work.  Moving and changing the positions of the coping stones on the top of the wall and putting them in different positions he figured out how to get the best result.   He picked up the discarded ones and placed them on the top of the wall.  The result I have to put on here as I am so proud of how he completed it.  We have so much of this wall, in fact it surrounds ours and our daughters house.  Fortunately all the rest is now and straight so this is a job that will never need to be done again for hundreds of years.  

Joining the 21st century

As we begin from scratch with our house we have decided to go with all the new gadgets that are around now to see who is at your door, to talk to them even when we are miles away etc.  To that end we have also decided to buy Alexi so that it will make it easier for me to play music throughout the house just by a simple voice to Alexi.  I love music but struggle to find the piece I want to play so how wonderful at the sound of my voice and an instruction given she will heed my command and play exactly what I want to hear when  want to hear it.  I will tell her to turn off the lights etc or turn them on at will.  I am quite excited to be joining in with the youngsters with these new gadgets.  Cannot wait to try them.

Well another day begins and I must get washed and dressed and get on with it!  I hope you are all doing ok but remember there is a big celebration of Christmas coming up so keep some energy in reserve.

Warm love to you all and again many many thanks for the comments, the likes and the shares.  It makes my day to see you have read my simple blog from wherever you are in the world.  

Carole xxx

HUMPTY DUMPTY Get off the fence NOW if you are able.

Talking to my consultant the other day he has reassured me that there has never been such a rich pipeline of drugs to be trialled.  We often see that people believe there is not much work going into finding a cure and this is so very wrong.  As I have stated before though we need participants in this, they can't work without us.  

How would you feel about trialling if you did not need to go through the endless rounds of right heart caths, MRI's etc.  Would it make you feel more inclined to trial drugs?  Well I know that there is a germ of an idea being worked on that may help to eliminate them so just keep that in mind and just maybe we can get more people onto these trials.  It could well be that you have told your ph specialist that you have no interest in trialling BEFORE but are now coming around to the idea.  If everyone able to trial registered their wish with their specialist the list of participants would grow and grow.  Just think about it as you swallow your next meds.  

I know I take a tablet every day.  A very expensive one called Ambrisenten,  This bright reddish oval shaped teeny tiny thing is helping me to still be here.  My friend Mandy Leonard was one of only six people that trialled this drug in the UK.  Not sure of elsewhere in the world but what a brave thing to do.  Many of us now are taking this medicine daily as part of our drug regime.  I thank you Mandy as it certainly got me off the hickman line and onto the oral meds I have been taking for the last six years. Many on this site will be aware of this particular drug and we take it thanks to Mandy Leonard and the others who took the bull by the horns for us and did their bit in the developing of this drug for ph. 

I also take viagara, huge doses and I know somebody within the group trialled it.  Sadly I did not take the name so if you see this post please give me a heads up.  Many of us are dependant on this particular drug or its generic make.  I know I would not be here without either of the above drugs so many thanks for trialling them for us.

James A Hazlett is on a trial which appears to be working so well for him  This particular trial is called Reata's "Lariat" trial for Bardoxolone Methyl.   In December he will transition to the longer range portion of the same drug/dosage (10mg) titled "Ranger"  He has not experienced any side effects from this drug but his RHC went down from 26mm to an amazing 17mm because of trial med and 10 mgs of opsumit.  His six minute walk test rose from 500 metres to 600 metres.  No change in shortage of breath.  

So we are moving forward, steadily steadily trial by trial to the day when we can hopefully eliminate the need for all these meds.  

Some friends you would be better off without.

I was so sorry to read about my lovely friend Tess who heard her friends had been talking about her behind her back, thinking she was not nearly so poorly as she told them.  Yes she was so hurt and angry and posted that it took time and effort to get dressed, slap on the make up and go out to be with them.  They had no idea of the impact this had on her body, of the crying she does at home in the quiet of her own space.  Why, well as we said before we look good dead!  Helen Akers had it right when she said we live too long!  Though she does not wish for us to die of course, she herself suffers from ph, I get exactly what she meant.  If we are diagnosed with an illness that we are told will kill us then yes, for sure friends rally around.  It doesn't take too much time though for us to suss out the ones who will stay when the going gets tough and those that will fall along the wayside because this illness is  "going on too long to be as bad as we say surely!"  

Let me assure you that this illness is as bad as it can get, that it is devastating to us but we have learned to fight it, we have learned to try to live as normal a life as we can to the outside world, at home is where it can all fall apart.  Personally I have learnt to take no prisoners  I can't be bothered with a "friend" I let go but it  still makes me smile today as to how it came about.   On the death of my mother she did the right thing"and called at my door with a bunch of carnations.  She said she had not got the time to come in as she had a very important appointment.  I was just so pleased at her thoughtfulness until  found out later in the day that the very  important appointment was a cup of tea over the road with another friend!"  So people like this I prefer to let  go and concentrate on the real friends we have, the ones we know will help us when we call, as indeed we have helped them in the past. Life is too short to cry over the ones that are not real friends Tess, concentrate on the ones who are always there for you and like HUMPTY DUMPTY who is sitting on the wall give your "not so real friends" a big kick in the pants off that darned wall!!!!!!! let them fall, you are better off without them.  

To the ones whose family and friends have stayed faithful and true then I congratulate you on having a really good supportive network, long may it continue, I am sure it is well deserved.  

For myself my "real" friends are still my friends, it is some of the ones I inherited when I met my husband that have proved to be fair weather ones so it is very easy to let go.  Some of these inherited ones though have turned out to be good true ones and I am forever grateful to you, you know who you are an the help you have given me.  

 Last weekend we enjoyed a lovely afternoon with friends at one of our local restaurants to celebrate an 80th birthday!  I think I did too much talking around our particular table and paid the price when we left but it was a small price to pay for spending time with such wonderful people in such beautiful surroundings.  So yes, we push ourselves to enjoy life but we are always aware of the consequences.  If you think the pleasure you will get for pushing yourself hard is worth the effort then go for it, if not just say no and forget about it.  

Other news for my family and friends.

As this blog is not just dedicated to ph I make no apologies that I post what is happening in my daily life of living with ph.  Well I can happily tell you the Izzy has learned to ride her bike!!!!!!  I never thought I would live to see the day but grandad worked with her in the park then invited me up to see the progress.  I was delighted to see her riding her bike, ok it was wibbly wobbly but now she will grow in confidence of course.  I was so pleased I actually bought her an LOL.  For those uninitiated it is a tiny doll that comes with accessories all fitted into a ball.  A huge money maker for the ones that created this doll but a big pleasure to see her open it.  Once opened she decided she wanted her grandad to video her playing with it and then put it on utube!  All went well for a while, she is a great narrater and not shy of the camera.  She then decided she needed the spotlight moving a little higher so indicated this to grandad.  To our horror the spotlight actually then fell onto the hair of a Barbie Doll that was to be part of this little production and burned it off!!!!!  There was much hilarity but it does show the danger of certain dolls if not being taken care of in the correct way.  Anyway the video was abandoned and then they moved on to making a safari scene in a shoe box, way to go!!!!!    

PH Awareness month

As most of you know this is a special month in raising awareness for invisible illnesses.  So it was with a happy heart I participated in an interview to talk about ph, research, awareness etc that I told you about in my last blog, and then this was followed up with a video.  I am waiting to hear when these will be seen but I don't think it can be too far ahead.  There is so much going on right now it is so hard to keep up!  An article will be appearing in the Yorkshire Post at some time so again not sure when.  Mary who took the interview asked if she could get a picture of Izzy and I together as she is a huge part in my fighting ph, I need to make many memories.  Whether this particular picture will be included who knows but once again  I feel I have done my bit towards raising awareness of ph and the need for all who can to get on board the trialling train. 

Shocked at my pain clinic appointment

As I went for my injections into my neck I was pleased to be one of the "early doors" patients as I always prefer to get things done in the morning.   All went well until the nurse took my form with my medicines and logged them into the computer.  She came back into the room and told me I would have to be last on the mornings list.  When  asked why she handed me a paper that she had taken from the file.  Now this paperwork I had never seen before, never been told about so I was horrified to learn that I am now insensitive to most antibiotics.  Terrible news for a patient with ph to hear, particularly as this sentence was directly under a line that said I was in chronic heart failure.  We know a simple cold can turn in an instant and kill us so I was  shocked at this news.  This meant that I had to be last on the list and that the operating room, all the equipment used etc had to be deep cleaned before use after lunch.  It clearly states on my form with a big red triangle that says confidential ISOLATE is an ESBL producer.  So just another thing to add to my list of problems!!  Ah well, we do what we do best and just get on with it.

House News

Now this is moving on a storm, particularly as my family next door have allowed us to use their electricity so the builders can make a cup of tea!!!!     Electric is due to be connected in four weeks time,  For now very little is used.  The big usage is when the house is built and the joiners are in doing all their work, quite a long way down the line for that so we will have our own supply way before then.  The water is used in small amounts to mix the concrete, this is a petrol concrete mixer so no electricity used for this.  I am pleased we don't need to use their supply so much but will still feel better when we have all our own.  The walls are beginning to go up and we see progress daily which is so lovely at last. 

Looking inwards, being reflective

Do you ever have days or hours when you do not want to talk to anyone, you just needlessly watch rubbish tv to take you mind off things.  Well that was my day yesterday.  Colin had lots of work to do organising bathrooms etc but it just went over my head.  I wrongly thought in my head we had already decided on the tiles for the bathroom.  I was wrong of course so this led to a bit of an atmosphere as I "never listen".  I do of course but my brain seems to be mush from time to time and I try to make myself out of the world of ph and put my brain into low gear.  I need to get back on track I know but I still think it was the shock of the recent report from the hospital, my local one not my ph one.  

So I leave you with another blog, I hope there is something of interest in it for you to read.  My last blog saw me receive 1027 reads so far which is amazing for little old me sitting here in the study trying to connect with you all.  I thank you from the bottom of my heart for any comment or a like or share.  

Warm love to all

Carole xxx