THIS IS ALL MY FAULT. I am an idiot.

I cannot believe my stupidity that brought  me to how I am right now.   Something so very simple has knocked me off my axis and flat onto the floor.  I deserve this as I knew the rules about ph, knew what we could and could not do safely.  So why did I disregard them and think I knew better, that all would be good.  The only good thing about any of it  is that I thought I was doing good, believed I was helping my friend.  So now I pay the price and am waiting until my PAH stabilises  ( hopefully).

I have an iRobot vacuum cleaner.  I call him Robert and he has done an amazing job for me over the last thirteen years, working really well with very little maintenance.  His battery needed changing, a cost of £40 so I decided to have an upgrade of him and get one of the newer models.  I was telling my friend this and she asked that I give her my old model,  of course she would pay for the battery.  My new iRobot arrived as did the new battery for my old faithful one.  I changed the battery and cleaned Robert so he was sparkling and ready to hand him over to my friend.  She was too busy  to help me as she had a crisis on, and as Colin was very busy in our new house I decided that as I had been doing so well with walking etc I could do it.  I could bag up Robert and all his paraphernalia into two bags and take him to his new home.  She lives opposite us virtually in the park and up three lots of stairs.

The stairs would have been ok but the weight of Robert was not doing me any good.  I could feel myself getting palpatations as I climbed each stair and halfway I truly thought I would faint.  I could barely see, my vision kept going odd on me.  On reaching the top floor and her house I threw myself onto the sofa.  She was very busy trying to sort out a scam from Talk Talk so I just sat until I felt I could get myself home.  My bed was an absolute MUST place to be and there I stayed until Colin arrived home. As I told him what I had done he was rightly cross.  He would have carried it over himself later.  I truly believed I would feel better today but I really do not.  My legs are very shaky and my head very swimmy. My hope is that I have not put too much strain on my heart that it has caused irreparable damage,  Time will tell but I know for a fact I will never make that mistake again.  My life is more important than getting a vac to an elderly neighbour.  I will learn to say no.  My specialists know much more than I do about the can and cannot of ph.  I have learnt a valuable lesson.  No matter how well I feel I am doing I must still obey the rules of ph, I am not invincible.

( Two days later and I feel ok  I actually walked to our new house so I managed to get my steps in, feeling thankful)

Izzy

I took her to see an eye specialist as she seems to be leaning closer over her books wherever we read.  As I had my first pair off glasses quite young I am aware that even young children need eye tests early.  I have since had my own eyes lasered so have no need of them but she just might have.  Izzy was very nervous but she need not have been  The specialist has a girl of his own aged 7 so knew well how to put her mind at rest.  She did really well and at the end of the appointment he told me that her eyes were good, in his words they were 20/20 or even better if that was possible.  Now how can you get better than 20/20 I just do not know but anyway we all left feeling grateful that she is O.K. though she was a little sad as she quite fancied glasses!  So different to my day when we had the awful national health ones thrust at us until such a time as parents could afford something better.  

Her usual holiday in the motor home came to a disastrous ending after just one night.  Sadly all the rain meant the sites were getting very boggy and the first morning there was a knock on the door and a kindly warden told them that they were evacuating the site, all had to leave as the rains continued to creep up ever nearer.  Home they came, van unpacked again and as Colin was telling me all that had gone on, how hard he had tried to get another site Izzy just ran over to him, threw her arms around his waist and said "never mind granddad you did your best"  I am so thankful she accepts things easily.  Right now she is in Centre Parks with her Nana Joy and Harrison  being thoroughly spoilt and having a super time.  

She has been thrilled to see that the nesting box she made herself last year with granddad is now in use.  There is a family of Blue Tits using the box, the mother is in and out so there is much to look forward to when the eggs hatch and the babies appear.  We love her to appreciate nature but the cherry on the cake was that it was the box SHE made for her garden.  Still not got around to helping her to make a nesting box for a hedgehog but I think it will have to wait until the house is ready now.

House News 

Well this is really moving quickly now.  Upstairs electrics all in, all the insulation and windows are fitted and now they are plaster boarding the second floor.  Colin is very busy with the air control system and he has worn his thumbs down almost to the bone with the concrete.  His drill was not up to the job of some of the work so I treated him to a new one, a stronger, more robust that will easily go through the walls like butter.  He thinks a couple more days and his job will be done.  I know he will feel relief as this is a job never attempted before, very new to him and he has had to feel his way carefully so as not to upset the balance of the eco part of the walls.  I feel a little guilty as today is his birthday and he is working hard and getting very dirty doing this job but it as to be done.   It is not something I could help him with either which makes the guilt even worse but there it is, soon be over and our new house will all have clean air in each and every room on the hour every hour. 

When you get taken short!!!

Most of us with ph take some form of diuretic as our bodies struggle to do the jobs normally taken for granted.  Our organs are all compromised so we accept we need help to cope with certain functions.  I take 4mgs of frusemide daily to help my body expel fluids and it works really well.  On the days I intend to be busy in the mornings I leave it and take it later in the day.  However some days I forget this rule and take a tablet then pay the price, needing to keep running to the loo.  So this made me smile the other day as I was walking on the canal to my church.  Sitting nicely at the side of the canal some wag had placed a toilet in all its glory!  Now it will not stay there for so long as we have amazing people that keep our river and canal clean and neat.  For me though it brought a smile to my face as right as that moment I was just thinking I could do with spending a penny!  I think that the ducks and geese would not bother me whilst doing it but the thought of the walkers and cyclists definitely put me off the idea of making use of the facilities!!  I waited until I reached church.

PH News

I know I bang on about trying to exercise when you can, hard with ph I know BUT the benefits of managing to do some has been proven.  I also take a turmeric capsule that contains the curcumins that we need to help with our joints.  Like most patients my joints did suffer badly but I needed to share this with you.  Once taking the turmeric for the last two months I have felt such a benefit.  I take just one a day as this particular tablet tells me to take, I have LAMBERTS  High Potency but I am sure that any health food store can direct you to other brands.  Along with that I take Vitamin D as this is vital to help our hearts I believe.  I take it in liquid form, two drops daily giving me the correct dose.  

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Anyway I digress this was to direct you to the Pulmonary Hypertension News Weekly Digest and an article that shows patients with PAH outcomes are linked to exercise.  Do not throw the book at me if exercise is totally out of your wave length, I get it.  I still have my duvet days, my days where lifting a cup is too hard but when I feel up to it I like nothing more than to walk, even in the rain with my face lifted up to feel the rain on my face.  I love knowing that my heart, which is a muscle of course is being worked.  My core is benefitting too and all my body feels so much better when I have managed to get this exercise in.  Walking with sticks {poles} might be helpful and we are told that you actually burn more calories using sticks as you are pumping your body more.  

To be honest the calories burned do not matter to me cos I need to confess I eat more when I arrive home!  It is just the sheer exhilaration of doing something that is helping my heart and as talked about in the Digest it leads to better outcomes for us all.  I walk on my own but I also have a friend who, if he is not too busy walks with me.  It always makes the walks so much easier and the steps just melt away.  It is also a good indicator of how you are doing as you should be able to walk and talk at the same time.  

Keith Andacky who was the first patient to have Denervation in the U.S.A.  has had his four week check up.  All appears to be going  well and he is already walking a little further than his test pre denervation.  I am sure we all wish for him to continue from strength to strength.  The more people with this procedure that do well it seems likely that in time it can be offered to many PAH patients.. I know for sure I have benefitted greatly thanks to this and I hope the same goes for anyone else who has either had it or is heading that way.    Always lovely to have a new option on the books so to speak.  

So there you have it  Up to date again.  Once again thank you for reading.  I almost thought about leaving Facebook because of all the mess they are in due to sharing our details to others.  I came within a hairs breadth of clicking off but then I thought of the benefits I derive from it, the PH Sites I am on, all the friends I have made and the fact that I would not be able to blog either so I changed my mind.  I do know that Facebook really needs to get its act together now though as it would not take much for us to just leave.  We need protection.  

Warm love to each and every one of you, go well 

Carole xxx

IF THIS STORY OF A YOUNG MAN DOES NOT MOVE YOU THEN NOTHING WILL

Opening my Facebook page this morning I saw the blog below shared by our Lyz Clements  It is written by Rob Scott, no I never heard of him either but boy, what an inspirational post.  A post that might, just might for those of you not on the donor list move you to getting yourself on it.  

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Rob is speaking from the heart after a liver transplant.  I guess that what he has written is how most people would feel post transplant and would like to express their eternal gratitude for the gift of life to the family of the one who so unselfishly signed the donation register and the family that let it go ahead..  All Rob knows is the age of the young man that died and helped others to live, he was just 21.

As most of you on the ph website know Lyz herself was a recipient of lungs and is doing so well thanks to her gift.  When she posted this story her heart must have been full with the knowledge that she was given such a chance at life. So please read it, think on it and if you have not yet gone that extra mile and signed the donor register then please do so.  This might have been a blog written by a member of your family.  See how heartfelt Rob is about his donor.  This blog by Rob needs to be shared so I am doing my bit to spread the word.

What if?

Let us play pretend now and let us be totally honest with ourselves.  Set the scene.  You have been given two weeks to live, you do NOT feel poorly in any way so can be free to move around at will.  Money is not an issue, you have more than enough to do what you want to do so the question is - what will you do with your time?

A new day is not promised to any of us.  There is no certainly of a future, but of course we have the hope.  One can be fit and healthy and in a second that is gone, as is shown by the above written by Rob.  I suppose what I am trying to say is we must live life to the full always, never put off until tomorrow and all that stuff.  

I think I would hire a cruise liner and staff etc and pack it with all the people I love first and foremost, then follow that up with anyone I have liked in my life and entertainers galore to keep everyone amused.   With no thoughts for anyone about housework, or jobs etc all concentration would be on enjoying life to the full for all of us.  We could sail the seas within limits to places we have never been to before and enjoy all the new sights  and sounds  and smells of the different lands and the diverse cultures.   I wonder what you would do.  It would be lovely to get some comments back on this one.  

Newbies

I see lots of newly diagnosed people with ph feeling terrified of what the future holds.  How well do I know the feeling, been there done that!  I remember every missed heartbeat and the feeling that this had to be the end.  Every time my legs gave in then there was the sense that I would never walk again.    The pulling into my lungs the precious air I needed to survive.  Of course you are scared but......

Remember many of us here have been diagnosed for quite a few years.  The medicines are helping us and more are being developed.  We are moving on so fast in the world of ph.  OK granted it may not be as quick as you would hope but believe me in terms of new meds we are doing so well now.  Give them a chance, do not give in and above all else fight. Our illness is rare and misunderstood by many doctors.  Our specialist ph doctors are the ones with the answers so if you are in doubt about any treatment given by your local GP then check with your ph team.  There are many support groups out there now for people living with ph, join the ones appropriate to your form of ph and ask questions.  Somebody is always listening and will be happy to talk to you, you do not walk alone.  

DPD

My trusty robot vacuum is not performing very well, poor Robert but he is 13 years old.  He does a bit of a job when I turn him on but he quickly tires and cannot find his way back to his base to recharge.  I know I can buy another battery for him but there are more updated versions out now and I decided to go for it.  I found the one I wanted, paid my money and waited for delivery.  Delivery day was Saturday, oh bummer, but non the less I waited in most of the day until around 3.00 I received a message saying he would be delivered now on Monday.  Obviously the courier had more orders than he could cope with.   I did not worry and responded to the message asking that I be informed within an hour of its arrival this time in order I did not waste yet another day.  

At the allotted time I waited and sure enough the ring came on my intercom saying the carrier was here with my parcel.  All was not as I thought it would be however as he had a parcel for me that was not the one I had been tracking.  When I told him this he said he had another one for me on the van, oh good my new iRobot.  He quickly disappeared and I waited and  waited and waited.  After 20 minutes I realised he was not returning, he had done a runner!  I rang his depot and discovered he had left my parcel on the floor when he unloaded it to put in more parcels.  Now anyone can make a mistake, I can accept that but to be so cowardly as to run leaving me on my own doorstep for 20 minutes is not acceptable in my book.  Of course I rang both the company I ordered Robert from and the carrier company.  All will be sorted but what really riled me was that later in the day I received yet another message from the carrier company to say that at 11.45 they tried to deliver my parcel but I was not in!!!!  Things like this are not good for my stress levels.  If only he had told me the truth, I am a reasonable person, I have made many mistakes in my life.  I would not have done anything else but wait until the following day for delivery.  Instead by his actions he has heaped on his own head a telling off by the carrier company.  I think he deserves it for running away instead of explaining the circumstances.  So today I will collect my new iRobot from a shop that accepts deliveries, I will collect it at my own convenience.  I hope to never set eyes on the driver Malcolm again, if I do he will get a piece of my mind.  

Don't worry about Robert, he will get a second chance of life, I will replace his battery and pass him on to a friend that struggles to push a vacuum cleaner around so he will not end up on a rubbish dump, it is the least he deserves after all the hard work he has done for me over the years.  

House news.

It is certainly moving on. The electrician has been working putting in the wiring upstairs and the guys are quickly following it up with lagging.  Well the first lot of lagging as there is more to come  in an eco house.  I have walked the upstairs room three times now and just love the design.  Yesterday we talked to a joiner about the roof as the difficulty in an eco house is getting lights into the roof spaces, not easy but we are working round all the issues.  Some windows are in, some are not as they are not quite ready for them.

It is lovely now that things are coming together.  We received a call from our tile retailer updating us on where our tiles are now, on the seas coming to us fortunately.  Our bathroom is safe and is in storage, still not got around to picking things out for the upstairs one yet but all is in hand.  We know where the loo etc is to be placed so all piping is ready for when things should be fitted.  

It is all still very messy and still no plaster board up yet which will transform the place but my sense of excitement grows whenever I enter it, my imagination can now take over and in my minds eye I am turning a house into a home.  I spend time looking at colour schemes, internal doors, lighting etc. It still seems far off until we move in but the reality is now the roof is on things are moving at breakneck speed.  

Izzy

Izzy won an award at school again last Friday.  Though we warned her it was unlikely we could attend the church to see her presented with her certificate hope always looms large in her mind.  I decided that no matter what I really needed to go and Colin decided that he would go, though he would be late and would stand at the back of the church.  I saw her walk in and her eyes scanned the adults sitting in the rows and her face lit up when she saw me.  She actually had a seat right in front of me so when I looked behind and saw Colin had arrived I was able to give her a nudge.  Well talk about then the sunshine came out.  How her face shone, she gave him the biggest beam she reserves for him and once again all was well in her world.

Her weekend was very busy as parents and grandad and the two children went to see Dancing On Ice.  Most agreed it was not as good as previous years but I think they still enjoyed it.  Sunday was to be a day at Alton Towers with friends.  I know how she would love that as it is one of her favourite places.

I have been getting her goody bag ready for when she goes away with her grandad next week.  She always gets two new videos so that they can both curl up at night after busy days and watch half one night and half the next. I do not buy expensive ones, often I get them from a charity shop of get the ones that are two for £6.  I bought her a new card game, a couple of very tiny bags of sweeties, and I mean tiny.  I put  in a drink for the journey and a couple of pieces of fruit.  When she comes here she can see the bag hanging on the door of the cloakroom but she cannot reach it.  She touches the bottom of it with her outstretched hand and wonders what it holds.  She loves me passing it to her when she is in the motor home and strapped in ready for off.  Then the much longed for bag is handed over and her exploration of it begins.  Then I return to our place, a friend comes to stay with me and peace reigns again in our home! 

Well now you are up to date with the goings on here, much work to be done as busy times ahead.  I hope this blog leaves you all well and I send much love to you all.

Please please take the time to comment or like the blog if you do.  It makes it worth while writing to you all, it helps me to feel a connection no matter where you are in the world.  

Warm love

Carole xxx

R.I.P. REBECCA LIDENBURG

Rebecca said it straight!

When Others Don’t Understand How PH Impacts Our Lives

Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly don’t understand that some days are okay and you’re actually able to do things.

They may claim you’re a liar. An exaggerator. A hypochondriac.

In times like this, it’s important not to doubt yourself. Do not bend to fit their wishes, or their limited understanding of pulmonary hypertension. Instead, use it as fuel. Educate them. Talk to them. Tell them how some days are worse than others, just like for them. Doesn’t everybody have bad days?! Perhaps ours are just a little more severe sometimes. Explain to them that our lungs will be different on days when we eat too much salt, when the weather is too hot or cold, or if we are adjusting our medications.

Pulmonary hypertension is not a “one-size-fits-all” illness. Everyone is different. Sometimes that is frustrating. When you’re desperate to meet someone who is exactly like you — suffering like you, feeling the same — you won’t find that person because no one is the same. And I think a lot of times, when people hear an illness term being used, they expect it to be the same for everyone.

You’ll never be 100% understood, and it’s easy to be upset by that or become angry when people don’t get what you go through. But being weighed down by anger and frustration won’t do you any good. It won’t make them understand better, or apologize for their flip remarks.

Remember that you have control over only you. How you react. What you say. How you teach them. How you love them, even when you’re furious that they don’t get it.

They may question it, but we’re living it. So, let’s make it a life worth living.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

All of us struggle trying to get our family and friends to understand our ph.  How it affects us, why we can do something one day, hour, minute and the next it is an impossible task for us to do.  If you struggle to find the words to explain it, bang your head in frustration at them not really having an understanding then you could show them these words written by a ph sister who sadly just lost her life to ph.  Looking good, fit and well on this picture nobody outside could see what lurked beneath and sadly she has died. She was hiding a disease inside her body that most will never have to deal with, never have a true understanding of it.  The words she wrote are so profound, so very very true.   

So Rebecca has died, so suddenly another young beautiful girl taken from her loving husband, family and friends, taken from the ph community of brothers and sisters worldwide.  How my heart hurts for the pain and suffering others now will be going through with the loss of her.

For us as a community Rebecca left us this amazing piece of advice.  Please read it, take it to heart, copy it, do whatever you like but do not be afraid to thrust it into the faces of the unbelievers, the ones who say “ it can’t be that bad” or “she is making it up” etc.  “She/he just wants sympathy” is another  one thrown at us sometimes.  No we don’t, we want a life, a life where we can breath, where every day is not measured in “spoons”.  (read the spoon theory) or biscuits, my blog That’s the way the cookie crumbles.

So I say thank you to Rebecca who left us with this wonderful article about living with ph.  You inspired many on their ph journey and you leave behind many who are shocked and saddened at a life lost too soon.  Breath easy now Rebecca. xxx

Wake up, it’s a beautiful morning.

I woke early today and the air felt crisp and clean. I could have stayed in bed for a while, after all it was only 6. 15 a.m. but why waste the day.  I am always well aware that our days change in the blink of an eye so I decided to “go for it” .  Donning my outerwear to keep me warm and my trusty buff, a very necessary part of my outdoor clothing when the air is cool ( I use it as a balaclava to cover my mouth from the cold air) slipping on my light weight but warm RAB  jacket to protect me from weather in case it turned colder and my trusty boots I was away.  

It was 6.45 by the time I left our apartment.  The world was just awakening and sleepy dog walkers passed me by with a weary “hello” , commuters that began work early were on their merry way in the few cars that whizzed by  me.  An ambulance screamed past with its lights flashing but no siren was necessary as the roads were pretty clear.  As I passed the post office in the village I could smell the fresh bread just out of the ovens as this post office is a bakery too.  I almost went in thinking a nice hot t cake straight from the warmth of the oven would be a lovely start to the  day but I restrained myself and continued  on my way. Down the hill I wove my way, how lovely that lungs that cannot cope with the slightest incline can actually embrace the downward sweep of a hill.  Past the village school, empty now as it was too early for the children but I knew in another two hours  it would be different again, bursting with children, running, shouting and screaming with joy as they played their merry games before the  school day  began and onto the path I travel many times between the river and the canal.  Sometimes this is on my scooter but today I knew it would  be a day I could do it on foot.  Oh happy days. 

The rain that had poured in the night had left many big deep puddles.  I had no choice but to splodge through many of them but my trusty boots could take the pace.  From time to time I walked around them onto the grass that was still white with an early morning frost, the crisp sound of my footsteps splintering the ice was lovely.   The river flowed and splashed merrily against rocks and the sound was very soothing.  Onwards through a thick blanket of crunchy fallen leaves, beginning their journey back to the earth, turning to mulch to help sustain new growth and on I went  until I reached the canal.  Oh my life felt good this morning,  

The world was  coming alive the more I walked,  I saw the builders in their high vis jackets beginning work on the mews houses being built overlooking the canal. Runners were passing me by at a fast pace, one that even were I well I could never have dealt with.  The ducks and mallards were embracing the day, preening their feathers.  I saw a pile of feathers at the side of the tow path that could only mean one thing, one bird had been taken for a meal.  Was it a fox or a mink, I will never know but life goes on.

As ever I gave thanks I am still alive to see these things, to smell the  fresh morning air to all my ph team.  I know without them I would long ago have been dust, gone, taken with ph. Also I am always thankful for my husband, who, when I wanted to give  in, when the pain became too much would make me pull my socks up,  always with the hope of a new day.  That was at the beginning of my journey, before I learnt just how much strength and stamina I had, before I decided to fight this ph.  

It took time, I won’t deny to get to  this stage.  After a year of doing nothing to begin to get back into the world and try to become a person again, not the blob in the chair.  It would have been so easy to just sit, let the people around me take care of me but I couldn’t do it.  I began slowly to build up stamina, you cannot do it in a day, you need patience.  Excercise CAN be done in a chair I learnt.  So over time my life has changed.  Like everyone I go through  periods where I can do very little, my husband takes over without asking, he knows I need help.  Then when I can do I DO!  Like today, I knew I could so I did it.  Tomorrow may be a different day, our future is not guaranteed.  

It did remind me of the day I went for lots of tests  when I was first diagnosed.  They did not make me do the walk test as I was bed bound but they did put me on the machine that tests how much air we can breath out.  I thought I did well and it was years later when reading something in my notes that I saw that they counted the test invalid  as I could not even blow enough to register, on the machine.   My stubborn streak helps.  I try not to give  in, to strive  to push myself.  If I leave this world tomorrow I know nobody can say I did not do my best, that is all anyone can ask of  their bodies, do your best for yourself and the people around you. We are all different with ph and I am aware some can do and some can’t do things, all anyone asks is that we try.  Tomorrow may well be a duvet day, how well we know we push ourselves one day and pay the price the next but it was so worth it.   My day was a true ginger biscuit day and I thoroughly enjoyed every minute of it.

PH and Pregnancy

I have just received my magazine from Sheffield, my pulmonary specialist unit.  One paragraph was so lovely to see for those with ph who are  wishing to have babies.  It states, and I quote - 

Staff at Sheffield have reduced the risk of pregnancy related deaths from 30 -50 per cent to about 10-20 percent,  Members of the team have been involved in developing international guidelines for managing PH in pregnancy.  

Just one more reason to be proud of my A Team at Sheffield, they break boundaries. 

Lyz Clements

Lyz returned from her visit to her transplant clinic and all is good.  Her lungs look great.  Her feet still are painful and she still has six weeks to go before she can drive so she is now  accepting visitors as she cannot go to them.  For obvious reasons your health needs to be good if you are considering visiting, colds and coughs are a no go zone for Lyz so take care.  I am hoping to go and  visit myself in the next few weeks, I can’t wait to see her, and this because a donor was thoughtful enough to put their name on the register.  Becoming a donor can  transform many lives. 

Keith Andacky - Denervation 

All went well with his denervation.  He has been told it may take months to notice any improvement and I second that but I know he is pleased to have had this done and now looks forward to a better life,  His lovely wife said  she has lots of jobs lined up for him when he does feel better LoL,  Hopefully easier walking when his pressures  drop. Go well Keith, onwards and upwards now. 

Waiting for it’s hat!

Our house is really coming along but we have  now come to a standstill as we await the steel that is needed for part of the roof that will form our covered terrace,  So most of the tiling us done but that part will be the brim of the hat, it will keep out the worst of the wind and rain over the terrace.  The waiting game begins again but hopefully not for too long. I know the windows are going in shortly and then the joiners can begin. 

We were invited out for a meal with our family for Mother’s Day and it was the first time I had seen the new house in a while.  Colin decided the site needed a tidy up and the contractor agreed so hopefully that job can be done whilst they await this final piece of the roof.  It has been difficult for the  builders as our plot is not  the biggest and what with their comfort cabins, scaffolding etc there has not been much room to store things enabling the site to stay tidier.  Also a lot of railings are up to keep the site safe taking up even more space on an already restricted  site. We are aware that this is a small cul de sac and we need to make sure we keep the place neat for the ones that live on it.  

Izzy

I am so cross that I never thought to take pictures of Izzy when we went out for Mother’s Day.  She looked a picture in a fabulous skirt and top, very pretty,  All three moms were given a drink of prosecco when we went to the restaurant but of course not Izzy.  She did leave with two bunches of daffodils tied with a silver bow from them restaurant so they will now be in her bedroom. Izzy is sleeping here this weekend and I am not sure how she is going to feel when one of her tasks is to pull apart all her Lego structures and re box them.  Very necessary as the whole apartment is being decorated ready for when we leave,  All pictures, memory box, ornaments are coming down ready for painting.  I see no point in rehanging them so they will be boxed up ready for our move.  

Thank goodness for all the masks I bought when the flue season was here.  When the paintwork is being sanded down it really gets to my lungs. It was driving me mad coughing until I remembered them and I am wearing one now as I type this,  Yes I may well resemble a rooster with its red valve and red straps but if it saves my lungs from being filled with the detritus of old paint I do not care.  

It is beginning to seem real at last, our  moving.  We have been and still are happy here but my dream to live next door to Izzy and to have my own  terrace is beginning to get more real with each passing  day.

Spring is in the air yet we are told to expect snow again this weekend.  We are surrounded here with crocuses covering en masse all the verges and parkland, how beautiful it all is,  Right now life is good, I intend to cherish every minute,  As you can see by my opening paragraph it can so easily be gone,  Make the most of your time, as the saying goes.......wake up and smell the roses.

Once again such a sad way to start my blog with but necessary I think to show how this young girls writing relates to us all.  

Take care and warm love to you all.  Please remember a comment, no matter how small means so much to me and,  I love them  all.

Love Carole xxxx

P.s.  as suspected today an almost duvet day but well worth it for my beautiful morning.  

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

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