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.  

https://l.facebook.com/l.php?u=https%3A%2F%2Fthoughtcatalog.com%2Frob-scott%2F2018%2F03%2Fyou-saved-my-life-and-i-dont-even-know-your-name%2F&h=ATN3O6L4ra_EQJle9U_9Vmc5eyIbIMexY2NKSplz-pxv70IUbFXNMd-vV7G_oARWhLllA7DloUyPeQE6fXh1Yk44GD3T1XkJv7yB9yGPeS8&s=1

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.