Denervation news - the results are in for this stage

Shattered but pleased

I can't  believe how exhausted I feel today after my hospital follow up for the denervation.  I think it must have been all the pent up thoughts and questions etc going around in my head.

Anyway here goes........  the news is good, not amazing but good,  I will take that.  My walk test was really good which astonished them so much they checked and re checked the measures on the floor.  Now not to say I could do this all the time, remember I was high on adrenalin but nonetheless a pleasing result.  

After lunch we were taken to the day care ward prior to my right heart cath and given a bed, oh the joy of getting my feet up at last but it was not long before I was on the move again.   All proceeded very quickly and efficiently as it seemed in no time I was taken up to the room next to the theatre.  Here I had a wonderful surprise.   Dan, the nurse who was with me throughout my denervation and who also took care of me for the 4 hours afterwards when I was waiting to be stable enough to return to the ward walked in.  Oh the joy of being enveloped in his arms and be given a huge squeeze.  He said he had seen my name on the board and wanted to try to get into theatre with me.   This proved not to be possible due to an emergency they were expecting but hey, so lovely to see him again after the lovely support he gave me before.  

Onwards then to the theatre.  The right heart cath holds no fears for me so no sedation was necessary. What a lovely lot they were in the theatre too.  All very pleasant and so well versed in their own roll.  Alex covered me up but left a little of my face exposed and on we went.  Now if I expected this to take only around 20 minutes I was so wrong.  Being part of research they needed a lot more than the normal pressures, wedges etc.  Once again I wore the mask after the initial pressure and wedges were taken and breathed in the nitric oxide for ten minutes and then more readings were taken. 

One hour and twenty minutes after being taken off the ward I was back in recovery.  This time I was greeted again by Dan who was staying with me to do the blood pressures necessary etc.   Alex came in and took all my notes so he could compare them to last time.  Dan, well versed in procedures of the a similar nature very kindly got me a box of tissues ready should they be needed when the results came in.  I did not have long to wait before Alex returned and told me that my pressures had dropped by 6, my heart was coping ok with the pressures though no real change there.  Alex was also pleased and relieved that nothing done concerning the denervation had had a detrimental effect on my ph. or my pulmonary artery.  We need to remember that this is all research and a learning curve so again a good result.  

Pushed back to the ward I was able to get off the trolley and walk to my bed.  No pat slide needed this time as there was after the denervation.  Colin had been concerned as I had been gone by this time for two hours.  We had then to wait to see Alex who was at that time doing another denervation patients' right heart cath.  At six o clock he came to see us and explained to Colin the results of the tests and we were allowed to go home.  We will return again in four moths time but no right heart cath needed, the last one will be at the twelve month follow up so who knows, my pressures may continue to drop a little.  I know too they may rise so I have no expectations, just pleased this step of the research is over and now on to living with ph and coping from day to day.

Talks

Today we are seeing the builder we gave all our plans to to discuss his prices etc for our new house.  I am very interested in this so I am fortunate enough that though still tired it is not such a day where I need to stay in bed.  We both have many questions buzzing around in our heads so need to keep our wits about us as we go through this very crucial stage. 

Just the sweetest thing these last few days

As you know I love to trundle on our canal and river banks, especially at this time of year when there is so much happening.  I had watched with interest a family of Canadian Geese on a certain stretch of the canal.  I saw their three goslings following the mom as they went gliding effortlessly by.  

Well on Wednesday Colin went with me and we saw these same goslings nestled under the wings of their mommy on the bank.  We both stopped and took pictures and as we looked around we saw yet another group of goslings, though slightly older than the first. They were so cute we snapped away at them and were happy to see that they had no concerns that we were so close.  

It is days like this that I am so extremely thankful we have the researchers, the doctors and the nursing staff that takes care of me.  I know without a doubt that their care watching over me  watching over me the sight of these goslings would not have been afforded to me.  I would have been gone, lost to all of this.  I love nature and the smell of the fresh air, the beauty that surrounds us and was once again so grateful to still be here to see such beautiful things. 

Our weekend

We have the had as you know the plans for our new home but no building is yet going on.  We cannot leave the site to  overgrow with grass as this would be so disrespectful to those that drive past.  This weekend will be spent mowing the grass and repairing a gate that was damaged when all the tree felling went on.  No easy job for Colin as there is a lot of digging to be done and a new post to concrete in position. 

Stacie Pridden

Most of us on here will know our lovely Stacie, and  will have followed her journey through her heart and lung transplant and seen the remarkable recovery she made.  We will then have gone on to see how she then began to deteriorate to the extent that now she has been told there s nothing to be done, no magic cure, no second chance of a transplant.  If we follow her blog "LifeisWorthTheFight" we will also see how she is still enjoying life to the best of her ability.  In order to do this she has the help of course of her family and friends but she also has her wonderful partner Mark.   

https://spark.adobe.com/page/sf5KW5mhaIZVT/ 

In order to do even more in the time left to her she has set up a go fund me page.  Now I would not normally mention them in my blog but as she is so remarkable coping with all of this I want to give you the opportunity if you visit her page to donate a small amount of money if you wish,  She is hoping to raise enough to buy one of the wheelchairs that cope with harder terrain than the norm so that she can be pushed up mountain sides, on the sands and rocky beaches etc.  When the time  comes she no longer needs this it will be handed over to another person to benefit from his wonderful gift.

Please read this blog. It will have you in tears so have your hankies ready and consider if you can think about helping her reach her goal.  

Well all for now but I must finish with saying a huge thank you for all your well wishes and support.  I really can't begin to comprehend how all those not  in a support group manage to cope without all the back up we have, all our brothers and sisters with ph who really get "how we feel". I am always thankful too to my other friends who are supportive when they themselves do not have ph.  They still offer their support and love and I feel so humbled.  

Warm love to each and every one of you

Carole xxxx

Denervation - am wearing the watch.

Not so sure about this any more

I am going for the right heart catheter on the 15th to see if there is any improvement in my levels since my denervation.  I truly do not know what to think any more.  The first three months were great, well after the first three weeks anyway.  I  felt so much more alive and was able to do more things without all the effort it normally would have taken me,  Since I had an episode of not feeling the best a few weeks ago I feel I have not picked up as I would have liked.  I did ring Alex and he reminded me I do have ph, we do have these stages but I truly hoped it would have passed.  It hasn't save for an odd day or two along the way.  My lethargy is huge, everything is so much of an effort.  I hate feeling like this.  Then watch has arrived that monitors so many things for me over the next two weeks so we will see what it reveals on the 15th.

I decided to push myself a little yesterday.  The day was terrible with the weather so I wanted to pull out the boxes that hold all Izzy's craft things and with a huge effort I managed to pull it out a little.  I pushed my way behind them to find a new lego, unopened had fallen down the back, great joy for Izzy.  I foolishly got onto my knees to dust round the back and just could not stand up.  I had no way to push my legs upright  at all, just no energy.  I shouted for Colin to come and rescue me.  Quite what I would have done if he was not around I do not know  There was certainly no way I could have got back up then as I was so firmly stuck behind the boxes, no strength to do anything.  How I hate ph.  

Bloods and David Cameron

My weekly blood test for warfarin was quite amusing today.  There were quite a lot of people waiting for the other bloods, not warfarin fortunately or I would have spent rather a long time in the department  I saw a man queuing in front of me wearing shorts, the weather was appalling and this man was obese.  I am not saying anything abut him being obese, there could be many health issues here and I also saw he had another one, his legs were just full of scabs, drying ones that made me wonder if he had a skin condition.  It must have been very severe to cause such a mess on his legs.  More than likely that is why he was wearing the shorts as material touching them could have caused him pain.  This is not the reason I smiled at the clinic but what happened next, a name was called and it was David Cameron, Of course all eyes turned to see who this was and then this guy wearing the shorts, so unlike David Cameron stood up and went into a cubicle.  I could see the smiles on the faces of the many in the waiting room.  He was so unlike our ex Prime Minister.  It was what happened next that set us all off into gales of laughter.  The next name to be called was Diane Abbot, the shadow home secretary in the labour party.  Most of us who knew  the name of the members of parliament were just in howls of laughter.  One "famous" name was funny enough but two, one straight after the other!  

On returning home I saw a guy in the street eating an ice cream!  The time was 8.45am, I wondered where he managed to buy  one so early as it was not one you could've taken from your fridge.  It was so obviously one of those that have a lot of air in them, Mr Whippy maybe.  I was so intrigued as to where he got it from at a time most of us are eating breakfast and not ice cream  that I looked up into the park opposite me to see if I could see an ice cream van.  I know a van does go in but not generally until the afternoon.  There was lots of activity going on as they are setting up for our annual charity gala, maybe he managed to get it from there.  I came home and ate my muesli!  

To pot or not to pot

I have a problem with my ankle.   It is called something like peroneals tibias anterior.  It is extremely painful and I have no idea why it occurred.  I do have a problem though in striking down with my foot onto the right side, as opposed to the middle or the left.  Now one way of fixing this is to pot it for six to eight weeks.  I do not want to go down this route so instead have had a special insole made which will force my foot to turn the other way, giving the tendons a chance to heal.  To have this made we went to a place called Whalley as there is a fabulous outdoor shop and upstairs a separate clinic for foot problems.  After my insoles were moulded and we were done we decided to take a look around Whalley.  Though we have visited many times we never got to see the place really.  We were very impressed and a little envious of our ph sister Catherine Makin who lives here.  If you are ever in Lancashire and near this place go for a look around, a small village but very sweet with lovely hills surrounding it.  (picture is the river in Whalley)

York

As we live quite close to York we decided when the weather was lovely to take a drive into the City.  Well a 40 minute drive took us over two and a half hours due to traffic and road works.  I wanted to go visit the Jorvik Centre now it is up and running again.  I was not disappointed.  The "street" and its inhabitants were still there, with two new ones added.  We discussed what to do with Izzy when Colin brings her here again in August and this is still on our list as she loves it.  Another one for her is the "dig" where she can join an archaeological dig and see if she can find some artefacts.  York has a wealth of history and there is still much to be discovered.  She has begged to go to the Treasurers House when in York to see if she can see the ghostly Roman Army  said to haunt the cellars.  This is a surprise to me that she wants to do this as we took her to the Thackray Museum last week which is a medical museum in Leeds she was terrified!

Thackray Museum has won many awards and is an amazing place to visit.  There is a street with all the foul smells one would have experienced back in the late 1800's.  It takes you on a journey following various people, some quite well off and some being the desperately poor in the city.  On setting foot on the street you are immediately taken back as you walk in between houses and shops, seeing the ones inflicted with such terrible diseases.  There are quite a few workshops where you can learn about many medical operations that went on and how they carried them out.  Some of the pictures are quite graphic but for the not so squeamish it is a great place to take the children with much learning about how things used to be.  

Colin did take her to the Wakefield Mining Museum which is where one actually goes down the lift shaft and into the mine . I was surprised that she actually loved this, even leaving her grandad on a few occasions when the man showing them around asked the kids to go into some of the tunnels that were too small for the adults .  She came home happy but black.  The guy that showed them around asked all the children when they came back up from the pit face to put their hands into a barrel of the coal dust, of course all the children complied and then he told them to rub their faces with it!!  Result very filthy kids but it did give them a picture of just how the men working down the mines day to day would come to the surface.  I took mine to this when they were small and they too loved it.  This one is in Wakefield for those looking for somewhere to take the kids through the long summer holiday. 

Atrocities

I can't bear to talk about Manchester and London and the terrible things that have happened to the innocents.  It just makes me too sad and I am leaving this out but they are all in my thoughts. 

I don't know if it is all this going on that is making me feel so down but down I definitely do feel.  I can't seem to summon up much interest or enthusiasm for things right now.  I just feel to be a bit separated from the world if you know what I mean.  I cannot  explain it but there it is.  I hope I begin to pick up soon.  Maybe when we hear from our builder about the price for the new house I might get some enthusiasm again., though in fairness I can't even summon up any enthusiasm for that.  It doesn't help that our boiler is leaking and that is quite a big job to be changed, shelves need to be emptied and unscrewed, carpet taken up, just mess and more mess.

Well I hate leaving you on a sour note so I do apologise!  I think I am calling it a day for now, putting my floppies on and am looking forward to seeing Izzy who is staying over for the night.  she does make me smile so I do still have a few smiles in reserve for which I am thankful for.

Warm love to you all for reading this, for bothering to click the like button when you have and for any comments.

Carole xxx.    

It is a mad, bad world my friends

The dreadful action of a suicide bomber has ruined the lives of many.  At a venue less than 30 miles from me the Manchester Arena, a place we have been to many times has been the target of another suicide bomber.  My family love this place as it holds many happy memories, of Dancing on Ice, of Disney on Ice and the many other lovely shows held here over the years.  All these memories now just lost to the horror and  despair of what went on here last night.  The coward that went amongst the people knowing he held their lives in his hands is now gone, not to get 100 virgins or whatever he hopes to achieve, but yes, he will gain the notoriety he feels is his as he will take his place on the "glory" roll where he has done his bit for ISIS.  Now as a nation we are left to grieve, we become just another statistic as we add up our dead, our dying and our injured.

It is easy to say that they won't break us, that we will continue on with our daily lives but of course we are broken.  And if I feel broken then what about the horrors that are now with the families of the ones lost or broken in the attack.  What memories for the rescue workers and the security workers dealing with the aftermath and how many nightmares to come for the ones caught up in it, who missed out on injury but will still bear the scars of the sights they have seen.  My heart bleeds for the innocent ones to suffer  all this and more to come as they realise the future generations taken away. The grandchildren that should have been born years in the future, the nephew and nieces never to come into the world, families torn apart with this senseless attack on the innocents.

It is always the innocent ones that suffer.  These cowards would not dare to stand in front of somebody who has the means to defend, who are on their guard, of course not.  How very simple and very cowardly to blow up a venue where the targets are children!  Right now I am tired of this world, tired of seeing the pain and anguish people keep having inflicted on them. I am grieving for Manchester just as I have grieved over any country that has suffered in this way.  Cruel, cruel world.

Goodbye my PH sister

Ingrid Wynne sadly lost her fight a week today.  What a shock this was as we had only seen her on the Saturday of our conference.  A lovely young lady she lost her life at the age of just 43.  Ingrid used to be a midwife, bringing babies safely into the world before ph struck her down.

Now anyone that met Ingrid would believe she was fit and healthy.  She walked with poise, her head held high, her dress was impeccable and her manner was lovely and quiet yet bubbly.  We with ph knew differently.  This hidden disease had taken its deadly hold of her and would not let her out of its clutches.  She told me she was going to see the doctor as she felt she had a chest infection beginning.  Sadly the following day she was gone, yet another statistic to ph.

So please do not be fooled by the appearance of your loved one, listen to them, take care of them and above all else cherish them.

My trundle on the banks

This is the view I had  yesterday on my trundle along the banks of the canal and river.  As I need the flat places to go how fortunate I am that this is just half a mile from my home, nestled between the River Calder and the Rochdale Canal.  The banks are pretty easy to manoeuvre, a bit bumpy in parts for a  mobility scooter where the roots are growing through the path but it is a place where I love to be.  The birds were singing their beautiful songs, so many different varieties and the sheep were bleating in the fields.  All this and with the sound of the river babbling away as it went about its business at the side of me.  The trees are looking beautiful  now as the verdant leaves are all out in their glory showing the different hues of green  all around.

I continued on my merry way passing a man canoeing on the canal with an inflatable canoe!  He was happy but the ones fishing not so happy as they had to move their rods so he could get through.  I carried on smiling and happy, (the bombing had not been carried out at this time) until I reached the basin at the canal, just past the second lock on my journey.  The canal barges were just beginning their day as the owners came up onto the decks to let the dogs out, or to release the moorings so they could begin another journey meandering slowly through the canals and locks,  I could smell bacon cooking from one of the barges and on another the owners were on the deck eating their cereal whilst contemplating how their day would go that stretched ahead of them. 

Izzy loves to be on the canal when the lock gates are opening,  to help with pushing the huge gates open and then looking down this huge void that soon fills with the water to allow the barges to go through on their journey.    All of this so lovely when the sun is shining but not so good when the weather is against us.  

2 Phlebotomy appointments in one day

I went for my weekly warfarin appointment today and then on to the doctors as I had not been feeling the best in the last couple of days.  Ever mindful of catching something in its tracks before it has a chance to develop my surgery encourages me to do this.  Silent pneumonia was diagnosed in the past this way.  She could not see much amiss so asked me to go down to the phlebotomy department to have my blood tested for  the second time in a morning,  this one to check for lots of things.   This was to be a long wait as a lady collapsed and needed to be hoisted up,  no mean fete as she was huge.  The portable hoist was brought out and two of the girls from the department helped to get her upright.

I was listening to the guy next to me talk to a lady about his house being haunted by  the spirit of a six year old boy who fell out of the window.  Apparently in the house there is always a cold spot in the corner of the room on the outside wall.  This cold spot did not manifest it seems until he heard of the death of the boy by somebody in the village.  Actually I wanted to say maybe he should get some lagging in the wall but kept my mouth shut.  The next person to take his place was a gentleman whose family were Jewish and suffered so many bad things in the war.  He lost man family members but did not know them as he came along towards the end of the war and he was fortunate his family saw the writing on the wall and moved over to the UK where his mother had been born.  So the hour and ten minutes rolled away quite nicely and now I play the waiting game to see if there is a problem.

Lego

I hear the clatter from the hall and it looks to be yet more of the lego cards kindly picked up from the supermarkets and donated to us for our grandchildren by other residents in the apartments here.  There will be one happy Izzy and a very excited Harry when these turn up at their house today.

Well the weather is beautiful, the sun shining down, the smell of new mown grass is in the air and it is time for Colin to take Izzy swimming at our local pool.  For me it is a day lying on my bed with the windows open and typing this blog on my computer for Colin to sort out for me and post it when he gets a minute.  I wish you all well, enjoy the sunshine but remember, the PH meds mean that for some the sun is not our friend.  Many people with ph do not know this and get very sunburned, stay safe, cover up.  

Warm love to all and once again thank you for bothering to click the like button or commenting on my blog.  

Carole xxx

Oh just a` quickie.  Some of you know I was gutted not to find the time to get my hair cut before our conference.  Tried to get an appointment when we came home but so many hospital visits, etc going on it was not easy to get one almost immediately.  I was talking to three friends who all go to a walk in hairdressers so I decided to give it a try.  No appointments are made and they just do a dry cut.  This suits me as I normally pay out for washing, cutting and straightening and then wash it again as soon as I arrive home!   I was not so keen on the idea, after all the price was just £6!!!! how good could it be, mine charges almost seven times that.  They do not wash or dry hair, one just goes into the shop and sits and waits until their turn.  I was shocked then when the lady that did mine showed me her credentials in the form of many certificates for hairdressing and she spent about half an hour cutting my hair.  I love the cut so far but as I have not yet washed it so we will see how it goes. 

Ever hopeful  xx 

                                      

PH Awareness I wore my moms' blouse today

PH Awareness

So here it is, the month when we need to make people aware of ph and its consequences if left untreated.  I am constantly doing my best all the year around, talking to people who want to listen but we can't just go around battering the illness at their heads.  For me I bring it up if I am seen to be in a disabled space when there seems no obvious reason.  I bring it up sat next to somebody in the surgery, or if it is a really bad day and I am appearing to be drunk while doing my shopping.  In this way if we can bring to the attention of people who have never heard of it just maybe they will remember it in a portion of their brain.

So today I wore a blouse that belonged to my mom.   My mom died almost three years ago now and though most of her clothes went to a charity shop I did keep behind a few pieces.  My mom was always smart, unlike me who is always happy to just have on a pair of clean pants and a clean top.  My mom wore beautiful clothes right to the end, she had the "eye" for fashion I do not.  One blouse I kept had a design embroidered on in periwinkle, the colour of our awareness ribbon.  I  knew on waking up I wanted to wear something that linked me to ph, even though nobody else knew why I was wearing it, so for the very first time I wore her blouse.  Now there was no way I could wear this blouse with a pair of my normal trousers so this meant searching my wardrobe for a nice, smart pair and also out came my lovely black linen jacket.  Finishing the ensemble with a lovely pair of ankle boots I stepped out to go shopping.  Well my word what a difference clothes make!  I knew I looked smart and I walked with my head held high.  Memories of my mom kept popping into my head and so this of course led me to memories of my dad and brother too, sadly no longer with us.  I knew my mom and dad would be so proud of the fight I have had and still am having in this fight for ph, would be proud of how much I try to bring awareness to people at all times.  We all need the strength of loved ones behind us when we have this cruel debilitating disease.  So that brings me nicely on to .........

What an absolute nerd!!!!

I posted yesterday that I was so pleased on attending my doctors surgery to meet with a new doctor who not only knows quite a lot about ipah but also is very very good friends with my Professor in this field of medicine. The Professor who saved my life gave a talk at my doctors wedding so consequently over the years sharing the dinner table or whatever some of the knowledge of ipah rubbed off on my new doctor.  He said he understood a lot of the complexities of ph. I was so thrilled I wanted to share the news with my ph family and my own friends.  Well what  shocker came back from a "friend" who told me it was just high blood pressure and anxiety I suffer from and he finished the sentence with ffs.  Now it took me some time to learn what ffs meant but it is not very nice anyway! 

So followed quite a few open posts to this man and it ended with me telling him he must have a very small brain as he obviously did not have the mental capacity to look up ipah before he sent such a derogatory message.  My friends told him how wrong he was and I also sent him a few private messages. One of my ph friends suggested he apologised but no, he was not out to do that so this coward just upped and ran, taking himself away from my page without a single word of "sorry".  It transpires that he is often drunk and upsets many people.  He will not be upsetting me as I have now blocked him from my site. 

The problem is that this is what many of us have to put up with.  As soon as the word hypertension hits a sentence then of course we know what will often follow.  "My grandma had that" one and "oh you can get tablets to cure that" is another we often here.   Quite how we get to to everyone about ph I am not sure, we keep plugging away but unlike cancer which everybody understands we seem to be lost somewhere in his myriad of diseases, we are buried deeply under the pile.  So here we are, trying to raise awareness again for this cruel illness, I keep writing my blogs telling of new medicines, of my trials and studies I am taking part in but I am truly waiting for the day I trial the medicine that cures me and those out there suffering from this disease.  It will come, I know it will and I so believe it will arrive whilst  am alive to take it.  Hence my longing for the new trial hopefully beginning at the end of the year or the start of next when I will begin the one from Papworth.  

I was messaging a ph friend  this morning whose husband had no idea just how devastating ph is.  He tells her she is lazy, that she needs to keep in shape.  Now this particular person walks around 11 miles a day so she is certainly not lazy but just because she can walk does not mean she doesn't have problems relating to ph.  Making a bed for instance, so easy to some can be so difficult because of the weight of the bedcovers, the bending and pulling to get the sheets on right can be just too hard to contemplate,  Before diagnosis my home was kept spotless by me, to step into my house one would never believe it was the abode of a desperately sick person, though towards the end of being undiagnosed I always asking for help with the duvet.  Take me outside of this place however and the change was dramatic.  We had a slope to contend with and that left me so breathless I had to stop a few times if we parked the car in the garage and walked up.  Getting changed to go out was a nightmare so I barely left the house, just too much effort was involved.  As we lived in Spain I spent most of my days with just a big cotton coverall people wear on the beach around the house and pool, so easy to wear and take off.  The sheer thought of donning proper clothes  could seem overwhelming.  a healthy person will find it difficult to understand this, I mean you just pull on a few things, fasten a few buttons, how hard can it be?  but it can be a huge fete for somebody dealing with problems with their hearts and lungs, almost a no go zone.  On diagnosis our family and friends must really take it on board themselves to keep up to date with this illness, its progression and the meds.  If you have a partner that just does not "get it" then maybe you run off copies of things relating to ph and leave it on the side of their bed for reading, spend some time really discussing the impact it has on your own personal life and do your very best to make them understand it is a hidden illness, a rare and devastating progressive one.  We need support of everyone who knows us.   

One thing we do need to remember though is that we can't keep banging on about how we feel to family and friends.  If they have truly taken it on board they should understand about how our days change from ginger biscuit to rich t biscuit and to the devastating wafer biscuit days.  It should be enough just to say that it is a ph day, they should understand and we should then let it go.  Do not bore those around us with your constant talks of ph. I know I must bore sone of you reading my blog about it but I believe that is another matter, we need the new ones that come on here to understand and to learn about life in the world of pulmonary hypertension.

Home again from another great conference.

We had our conference this last weekend and what a super time we had.  The talks were very interesting, telling of any new developments in the world of ph and where we are headed.   One of the big things about our conferences though is the social aspect of it.  As we are such a rare group it is so lovely to be with people who just "get" how we feel.  We do not have to make excuses for our lack of energy etc.
 The beauty of the conferences also is that we can show the newbies that there is still a life to be lived whilst living with ph.

I just loved seeing old friends and new, way too many to mention on here but each and everyone of my ph family I spoke too are very much thought of by me.  We truly do love our ph friends, after all they truly understand all we go through, going through it all themselves.

We only had one thing that was not nice at the conference this year and it was the flies.  I do not mean the big ones but fruit fly types and believe me there were so many it was horrendous.

This hotel really needs to get this problem sorted out.  We were awake most of the first night killing them, the white bed cover looked polka dot in the morning with a few traces of red thrown in.  We could not go into the bathroom, it was black with the things and we walked on them when we put our feet on the floor.  Colin went to tell the reception and she sent a man with a cloth to clean them up.  He was actually shocked when he saw just how bad the infestation was.  The good thing was we were moved and into a junior suite at that which was very lovely and fly free.  We were not the only ones with this trouble as it appeared very many did.  As we have a lung condition of course they could not spray around us.  It really was not good enough.  This flies did not just appear overnight, they must have known of the problem before but being anxious not to lose a booking decided not to tell us.  Very naughty Crown Plaza, it may just impact on future bookings, who knows, not up to me but if it were it just might.

As it was a Pirate Theme Colin had his picture taken with a skull and sent it to our Izzy with the caption that he had got a new girl..  A very swift reply came back, "yes but she is not as pretty as me"  Must concur on this one.  

And back to normality again

Here we go again now we are home with the endless round of doctors, bloods etc.  I have a colonoscopy coming up, my annual one, my pain clinic to attend for injections into my spine, my normal weekly bloods and also on the 15th June as stated above my right heart cath.  I want to talk to somebody about maybe going on heparin for a time as to keep stopping taking warfare and then struggling to get it back to an acceptable level and stopping it again three times in succession is just a bit much, I would much rather just take heparin until all  of these procedures are over and done with.  Not sure who to talk to though, I do not believe my local doctor will have the power so I think I will once again get on to my lovely A Team at Sheffield and ask the advice of Ian Hamilton, lead pharmacist and see what he advises.  

House plans

At last we have a builder and he is going through all our plans to see what is what.  We shall have a meeting with him in a short while to see if he is coming in around our budget.  If all is well then we shall ask him when the earliest will be he can break ground, now that will be an exciting time indeed. We already have an agreement with friends that they will come down to watch that and share a bottle of wine, I will stick to water!  Things seem to be moving on now and I pray it continues.

Time for bed!

After a very busy few weeks, as we had been on holiday to Wales part of April and May too we just have not had a minute to think or turn around.  I promised myself an early night and my own pillow.  I generally take my own wherever I go but forgot and believe me I paid the price for this lapse.  So to bed for me now.

Thank you again for reading, for taking the time out to click like and for the comments.  I was talking to one of my ph family who always comments and I told her just how much they are appreciated.

Love to each and every one of you, and for those home from the conference, enjoy a fly free night!

Carole xxx

Breakthrough points to CURE for debilitating heart and lung disease.

Could this be an end to my trialling

As most of you will know the last five years of my life has been spent trialling or researching one med after another in the hope to find either a cure or another medicine to help us to cope with this dreadful disease.  Please read this article though to the end, it is the one I am to be trialling either at the end of this year or early next year.  Now in clinical development it is hoped to begin its next phase of trialling on humans.  I know it sounds scary to be trialling meds, there is always the fear of the unknown but we must do this.  I am counting off the months, not wishing them away, just counting them off, to the time when I will once again trial a medicine that is hoped will be the cure.  One of them will be, so I just trial them all in certain knowledge that one will hit the mark and cure me of his terrible pah. 

So here we have a couple of links about this particular hope for a cure.  

http://www.cam.ac.uk/research/news/hope-for-first-treatment-targeting-cause-of-debilitating-heart-and-lung-disease

https://www.sciencedaily.com/releases/2015/06/150615125247.htm

If I have put this link up before I offer no apologies, some of the new ones will not have seen them and above all else we must offer them hope  of a future without feeling so terrible poorly all the time.  To live without hope is only half a life so I prefer to live with this hope of a cure.   Yes, yes to you grammar buffs there is a lot of "hopes" in this paragraph but that is deliberate.  Hope hope, hope, we cannot stress enough that we live in hope.  

Our conference looms ever nearer.

In the UK, as I am sure in whichever country you live, this conference is always looked forward to so much by us all.  A chance to meet old and new friends and to also catch up with all the news things opened in the world of ph.  I always believe there surely cannot be anything new I can learn as I do my best to keep up with research into ph but no, once again they will astound me and have a speaker talking about yet another aspect of ph, either with the hope of a new treatment or talking about better ways to manage it.  

When I was first diagnosed for instance we were told to be very careful of exercise, they were so worried that it would make our hearts work too hard and we could go into heart failure.  Research however has now proved otherwise,  all these aspects are talked about at our conference.  I now know that to just be scared of working our hearts too hard or being sedentary is very much the wrong thing to do.  For those in wheelchairs they have now said that some form of exercise is beneficial.  Working the muscles even whilst sitting and watching tv can be done. Move your toes into circles, move your arms, do not just be the blob in the chair, help yourself.  After all it is your body that does the suffering so help it to help itself so to speak.   

At our conference we generally have a class about wellbeing in ph.  I attended one where we were taught to exercise all our body whilst barely moving so really there is no excuse to not do something. Please, I know there is always an exception to the rule and if you are that exception then do not berate me for typing this, I am reaching out to the now over 700 people who read this blog, many of them, though not all are ph sufferers. We have a cd about exercise with ph and if you can get hold of a copy then I urge you to do so.  

Stacie Pridden

My lovely young friend is still blogging, sill fighting and is still telling us not to give in.  She is fighting to live the life she can and is very much supported by Mark, her lovely guy and her family.  Please if you send her message do not expect a reply, write her message of support but not those asking questions as she cannot spend all her precious time responding to all your questions.  Messages of encouragement though are good as there is no need for a response from her.  I have absolutely no idea if she will be at our conference this year, I have not asked her but I know if she is she will be overwhelmed with everyone trying to give her cuddles.  This in itself is such a dangerous thing for Stacie.  A simple bug could kill her as her heart and lungs struggle to cope with everyday living.  Please if she does make it, (though I somehow think she will not) do not try to give her support in this way.  

Busy week

So much to deal with and so much stress regarding the house.  As I always said Mr Sunderland has forgotten anything to do with the trees so there is no argument about this now.  I have bought a bow saw so that my daughter can every now and again as they begin to grow back again remove the height immediately so as not to have to cope with this costly experience again, and of course the stress.  We do have a chain saw but Colin will certainly not allow anyone but himself the use of this.  When we called at our land on Saturday Danielle, Chris and Izzy were all in the plot looking at our now so wonderful view.  I will get sone proper pictures to show later.  They said that as the trees were now lowered on their plot they now have a lovely view of the horizon which is lovely to see in the morning.  Hopefully at some time in the future a new owner of the house in front of theirs will reduce the height of two enormous cypress trees which will give them even more spectacular views of the hills in front of them.  

Time out

With all the stress {yes there is so much to do with the plans now needing more work before going out to tender) we decided to take a little break and we went to Hardcastle Crags.  Many people were walking by the side of the river, up and down over the crags, so very peaceful.. Some were enjoying picnics by the side of the water as it bubbled away making its way downstream.  

Hardcastle Crags was once home to a railways and a cotton mill and is so very interesting.  Right in the middle of the Crags there is a mill called Gibson Mill and this is where weaving was done over 200 years ago.  This mill has now been restored and many enjoy looking into the past as its history unfolds.

This mill was built in around 1800 and was one of the first mills of the industrial Revolution.   Though it only produced cloth for 90 years its time was not yet done,  It then began a life as an entertainment emporium with roller skating and tea dances held here until 1940.  It was then left to fall into a ruin until the National Trust acquired it and the restoration began.  

It has no connection to the outside world for energy, waste and water.  This property is the only one owned by the National Trust that is 100% renewable.  Going to the loo here is quite an experience as the sign above the toilet tells ALL, yes men included to sit to use the loo.  If you want to poo you sit at the back of the toilet, if you want to wee then you sit at the front.  When completing  what nature intended there is a big box of sawdust and you are required to throw a handful when finished!  Yet still this mill has a tea room where all water is brought in from the outside daily in large containers!   

Absolutely all of the energy is generated by water turbines and photovoltaic panels on the roof.  There is no connection to mains electricity at all.  When the water levels are low or there is not enough sunlight then of course there is no energy being stored.  This then brings into use the batteries that have stored the power from when the water was at the correct height or the sunlight was sufficient to store the power.  Of curse at times such as these the usage is monitored very carefully.  

Everything here is recycled, there are no rubbish collections and the waste from the toilets is turned over back to the land once the tiger worms have done their task.  It certainly makes us appreciate how our modern houses work with the flick of a switch.

Who can this possibly be

A picture of Izzy of course on one of her forays with her beloved grandad.  what a great time she had wearing the costumes of bygone days.  She has developed so much since attending school, coming out of her shell and making us laugh so much with her antics.  She will miss us as we go away on one of our small holidays on Thursday.  Our motor home will be loaded up tomorrow and food put in on the morning and away we go.  We are gong down to Wales and then moving into the picture postcard places in middle England.  Both of us can't wait. 

I have a bug, a tummy bug and am ending this blog now as I feel so rotten.  I intend to go and lay on the bed for as long as I like without feeling bad about being lazy and with the sick bowl by the side of me.

Take care everyone  Thank you so much for always being there for me, for bothering to read etc.   must go, bowl awaits.

Warm love

Carole xxx

I’m aware I am rare

May 5th is marked around as World PH Day.  This is going to be a month long effort around the world to try to get acknowledgment of PH and to try to get others to see the importance of improving the quality of life for people suffering with this condition.  If you see anything about Periwinkle Hearts Around the World then please read it.  We really need to get the message across about this condition we are living with.  It may help people to be diagnosed before their condition gets too bad, it may help people to understand that because we look well on the outside so much bad stuff is happening inside.  I like that the world is going to be united in this effort, particularly as everywhere we look today that are so many dreadful things going on.  

I know that I am rare, I am one in a million.  I did not choose this illness, it chose me.  I can’t walk away from it, I cant leave it behind just for a day, I can’t even, at this moment in time think there is a cure and travel across the world to take a magic pill, it has not arrived yet BUT it will and my aim is to be here when this does. 

 Being rare is not a good thing to be as unlike illnesses where there are many people suffering  from the same disease we have virtually no recognition for ours.  People still do not understand.  They can have no concept of just how cruel this disease is, how it takes away so much of our lives.  It just keeps slamming doors in our faces.  Things we could do all of a sudden we cannot, places we wish to visit are out of bounds as it can be difficult with oxygen, mobility scooters etc to access them so here we go again, another door slammed shut. 

When I am with friends I do my best to act as I used to but sadly it does not take long until the tell tale signs appear and my need to either sit down, or go to bed seems to gallop so quickly towards me I can sometimes despair. Generally though I do not let it worry me too much, I always believe that the next day will be better.  I prefer to be a glass half full person than a glass half empty.

Denervation

To be quite honest I have done really well these past few weeks.  As it is a trial and research we cannot know if it will quickly go downhill as my lungs will try to repair themselves, I hope they do not in this instance.   Promises have not been made about this procedure so we will wait until the next MRI to see  but even if the worst does happen and my lungs remodel themselves back to how they were I still say it was worth it for the quality of life I have had these last few weeks.  My breathing still feels better than it was and my ability to do things has improved so long may it last.  After saying that Tuesday was a day my legs were not strong at all and I did nothing all day but hey, I used to have many more days under my duvet than I am now so result. 

Sadly number 13, or David as I now know him to be has still not had his done yet,.  There is so much that needs to come together all at once for this to take place.  The ones from Israel need to take a few days out, our specialist Alex needs to be available,  the theatre needs a long time to be booked for, the MRI, the RHC, the 6 minute walk test, the ECG need to be carried out and they must be all done just before the op to satisfy the criteria needed for it to take place as it is research.  All this does not seem to be able to get in place for David so he still waits.  He is trying to put it behind him for the time being and get on with things in his life.  Waiting is so hard, I know and mine was only put off for a very short time.  I hope things can all get sorted so that he can have his done and then live an improved life.  

Stacie Pridden

Well what can you say about Stacie.  A girl now denied her second transplant due to complications but she still manages to be encouraging of others, still is telling us all not to worry, still is determined to live her life to the full.  She is now telling us all to quit complaining about the small stuff and she is so right.  When we look around us and see others that are suffering much more than us we need to take stock of just what we can do, not what we can’t.  Life passes by, we cannot stop the sands of time so we must make the most of what we do have and not think of what we do not.  As I said earlier I am not about to think that this disease will kill me, I aim to make sure that it will not.  We could all take a leaf out of the book of life of Stacie and learn to make the most of each day, live life to the full and most of all to enjoy what we are doing.  Stacie is one hell of a woman and how proud I am that she is my friend.  As I said last week in my blog she will be around for a long time yet.  

Plans

Our plans have now gone off again to the council, this time with the building regs to be checked out and then they will go out to tender.  I want to call the house a name, Colin is not so keen but I think I will get my way on this one.  I have no ideas yet but I will keep thinking and I will get the right one in time.

Tomorrow at last the trees will come down. It should have been last week but our tree surgeon had his things stolen so it set him back a week having to go out and buy more.  Thankfully the neighbour of Danielle and Chris has agreed that the height of the ones that obscure their view can be cut.  First he said we could then he said we could not and last week when I gave him a lift to town he said she could.  I am not talking to him again before the operation has been carried out as I cant bear to think he might change his mind again!  We are ok  We do not have neighbours in front of us or to the side except for Danielle and Chris..  There are none behind us either so thank goodness ours is not a problem.  I am so looking forward to be able to see our view in full glory.  

While the cats away

Colin and Izzy are due back tomorrow after spending a few days off in the motor home.  They have done so much it has made me dizzy listening to them.  Nesting box has been built, they made the best sand sculpture of a whale {though this was immediately walked over by a girl after the judging} , she did get told off, I think she was jealous as she did not win.  Swimming was a very important part of this holiday and once again she came out tops.  She can be quite a little show off can this madam and so she was again.  She made friends with an older girl who could not swim so Izzy goes into full show off mode, jumping in, swimming under water and on her back, swimming to the bottom of the pool to pick up objects and oh just everything she can to swank.  It just makes me smile.

As I was having a good day my good friend Barbara and I decided to head off to Leeds for a bit of retail therapy.  Now the good thing about this friend is that I met her at my pulmonary exercise class so this is somebody who can relate to how I can feel from minute to minute, suffering herself from a lung problem since birth.  I was so pleased to find a super pair of trousers and a lovely shirt ready for the conference.  I was also able to bag a summer coat I had seen before but thought it was too pricy down to half price, I bagged it this time.   My friend bought a few things and then off we went to an Italian place for lunch and very nice it was too.  I had such a lovely day and am blessed that we met at our classes.  Being with somebody that you have so much in common with is truly a bonus.  

4 days later - We have our view and our walls are safe

Well the tree felling did not go quite to plan!  As the tree surgeon was actually up the tree with his chain saw the neighbour of my daughter came out saying nothing was to be cut, he would be seeing the council etc,  I was shocked and reminded him of the conversation we had had but to no avail.  Anyway as most of the work being done was to remove all of the branches etc that hung so far into my daughters garden was absolutely allowed I told the men to carry on and if any consequences I would take the blame.  I also asked the guys to lower the height of the trees, these trees could not even be seen by the guy saying no as there are even more trees, higher ones too being around 45 feet high!  

The work took two days and both I and Chris' mom were taking out cups of coffee and tea and cake etc.  The two trees on our land have been felled and the children were thrilled to see them being pulled down once all was in place.  There is so much wood we can't cope with it all so a friend who helped is taking some of it too.  A neighbour from down the road asked for some so that he can whittle little sculptures, I hope to see one eventually.  Fortunately the worry  we had about our dry stone walls falling down when the trees were felled were unfounded, they are steady and strong so that they can once again stand the test of time. 

Something a ph person really should know

There are many complications for somebody with ph and one of them is our suppressed immune system.  It brought it home to me again this weekend on the return of our granddaughter and Colin,    I noticed a rash on the back of Colin and knew immediately it was shingles,  I also know that if this is caught and treatment begun within 72 hours the condition can be stabilised quickly.  After 72 hours no anti viral meds are given.  Typically when I saw it on the day he returned the time was 9.00 in the evening and the doctor was closed until Tuesday!  I decided to ring 111 for advice and was told he should go to A & E.  Of course he rightly refused saying it was neither an accident or an emergency.  No wonder our services are overflowing with people when anything from a stubbed toe and other minor things are being sent to A & E.  On his refusal he was told they would talk to a triage nurse.  Another phone call later and after explaining my condition and susceptibility to diseases we were told a doctor would come out,  He consequently arrived at 12.30 in the morning and agreed it was indeed shingles and gave a prescription for an anti viral drug.  Were I to contact the shingles it would mean a hospital stay and my anti viral drugs would. be delivered via an I.V line, something I would rather not happen.  So here we are being careful not to make direct contact with the rash, his towels going on a very hot wash and certainly not touching mine!  Fortunately as this is all on his trunk he can wear a t shirt at all times and so hopefully I will not get shingles,  This cannot be caught by touching hands, kissing etc but by actually touching the rash when the blisters have broken I don't aim to be doing that so I should dodge this bullet at least, 

It is always best when a member of your family is poorly to remember our suppressed immune system and to take steps to try to avoid catching whatever illness they have,  This is easier said than done I know but remember what may not seem to be a problematic illness for a healthy person for us it can become serious in an instant.  The doctor that came out to see Colin said calling 111 was exactly the right thing to do given my illness.  On top of the shingles he now has a cold, first one in around three years, oh joy! 

Ph patch now delayed

Sadly the much longed for patch to deliver meds needed for patients with pah has now been postponed until 2018.  The longed for patch to take the place in certain instances of the dreaded I.V line was considered safe to use and those of us that were either using the line or heading that way have now had hopes dashed for another year. I am hoping that before that time to be trialling a drug hoped to be the cure for ph, I am always optimistic that the cure will be in my lifetime, whether I will still be of an age to enjoy good health will be another thing!

So here we are, once more playing the waiting game.  This is a game we are getting good at  playing for sure. 

Ok, another blog going out and then to get on with our day, not decided what to do with it yet but it won't be spent as a blob in the chair!  I am always aiming to make the most of each day so will talk to Colin and make our plans. 

Thank you so much for reading, liking, sharing, commentating etc,  I have been shocked and pleased to see how many are now reading my blogs.  I realised a few months ago that one ph page was not having them posted!  Horrified this was quickly rectified and now my blog is read by over 600 people, the last few over 700 so of course I am so thrilled!  

Have a lovely week everyone and I send warm hugs to you all.

Carole xxx

The saddest week for ph.

This weeks  post is very pulmonary hypertension related and it is terribly sad.  It began with the anniversary of the death of our very lovely Laura Parker.  It barely seems two minutes since I went for my hospital visit and was looking  forward to a catch up with Laura as I generally did.  Sadly this time I had missed her by a day as she had been told there was nothing more that could be done for her,  We lost her a few short weeks later as she left this life surrounded by all her loved ones, so terribly sad and she left behind a husband and young son.

I have no idea how they have been coping but I do know Laura made sure there were cards for birthdays, Christmas, anniversaries etc left behind for them.  Laura was and still is missed terribly not just by her own family and friends but by the ph community who loved her.  I know the staff of M2 where she had the best of care loved her too and will have felt her loss so much.  Awful  that we lost her, ph is a very cruel disease.

Stacie Pridden

Most of you will know Stacie, a bubbly young lady who has been fighting ph for so many years.  Stacie had a transplant a year ago that appeared to be a huge success.  We were all astounded as to how quickly she recovered and she was soon home and making up for lost time,  We saw her on television and in newspapers telling her story and attending Wimbledon ( her dream event which she finally managed to attend) and her holidays away with her guy.

Sadly we heard the news that her lungs are not doing well at all.  The doctors tried so many things to help them but the news now is that they won't recover and that the hoped for second transplant can never take place.  It isn't just a set back, a wait till you are in a better place kind of news, it is a no way for another transplant  now, you would not come out of the theatre alive.  To say we are all reeling at this news just would not cover it,  I am gutted about this BUT I also know Stacie.

Stacie is above all else a fighter.  When others might be down and out Stacie jumps up ready for the fight to continue and I know this is what she will be doing now.  She will be looking to do everything she wants to do and  she will cram into her life so much, all the while grabbing as much enjoyment as she possibly can do and making lovely memories for those that know and love her.   There is still a life to live for Stacie and I am sure you will all be wishing her well and rooting for her to make each second count. Stacie will continue to kick the ass of ph for a long while to come.

It's not always ph

This occurred quite a while ago as I had my Hickman line in,  I remember this as  if it was yesterday. It was Christmas 2010 and I had not been feeling too good at all.  Still all the family were due round for lunch and then a couple of days later we were going to meet up with friends and also one of my ph nurses down in the Village of Hope ( lovely word hope isn't it! ). Anyway the days leading up to Christmas were not good at all.  As Colin cleaned my line and filled my pump I remember sitting on a chair and silently crying,  He asked  why and I said it was so painful.  He was shocked as he was as  gentle as he could possibly be but I know pain and I knew how bad it was,  A friend called to see us and noticed I was walking all hunched over,  The reason for this was my heart did not hurt as much in this position.  I was sure my heart was giving up the battle but I was also sure I would have my last Christmas surrounded by my family.

I managed it albeit in so much pain and had my first Christmas with my new granddaughter Izzy.  I didn't know it then but times were changing so much for my daughter and she was carrying her own burdens but neither of us spoke of them, we didn't want to spoil the day. Still memories were  made of what I was sure would be my last time with all my family feeling joyful.

Two days later I cancelled my trip to Hope and we instead went to  our A & E as I was so sure I was having a heart attack.  They could not help me so spoke to my A Team at Sheffield who said they were to get me there asap.  I remember throwing up in the ambulance as I had been given morphine at my hospital for the pain.  I do not do well with opiates at all and was now dealing with the consequences.  The ambulance team were so lovely and assured me that I was not having a heart attack as I was wired up to the ecg machine and it would have shown up on it.  I was bewildered, as indeed was Colin.  What was happening to cause such an incredible degree of pain that wasn't related to my heart.  My line came out just above my heart so I was convinced it was heart related.

I know the lovely staff were shocked  by my appearance, grey, shaking, throwing up and in so much pain.  Once again all the wheels were set in motion and tests carried out.  I remember Charlie, my doctor telling me he didn't know what was going on but it was not a heart attack too.  Though I felt relief I was still in incredible pain.  I told Charlie about  my hunching over as it was the best was to ease some of the pain.  He had a light bulb moment and cane to check my chest.  He pressed on the area over my heart and I screamed.  this shocked  Charlie and Colin.  Colin said he had no idea just how much pain I had been in, that even to get washed must have been agony, it was,  Then Charlie pushed again and again I screamed out it was unbearable.  We were then told that I had a condition called muscular  skeletosis.  There are many reasons why this occur's and some do not have it too bad but the muscles, tendons  etc all around my chest wall were so badly inflamed that even the slightest movement caused pain.

Over time with pain killers this went, it sometimes comes back a little to give me a gentle hint of how bad it can get.  For me I was so relieved not to be having a heart attack.  I think sometimes we put every little thing that is wrong with us down to ph, easily done as it does affect our bodies so much and the meds are so powerful they cause problems but we do need to remember not everything has its cause in ph.

Mary, Mary, leave your tights alone!

Our local school where Izzy attends is a church school and we were invited to attend the Easter Show.  Izzy was Mary and though she was on the stage for quite a long time she did not have much to say or do.  However there was a lot of time standing central stage.  In her outfit depicting the clothes of the time she looked so cute but......... her tights must have felt uncomfortable and she kept on pulling them up on top of her clothes.  We tried to catch her eye to tell her not to do this to no avail.  We now have a lovely video of her spoiled by this continues action.  In time we will smile, she will too as she grows older but right now I am just wishing she had taken the darned tights off before going onto the stage.  The play itself was beautifully performed and the singing was outstanding.  This is a lovely school and we are so pleased she managed to get a place here.

New Admins for PAH Group

Once again we felt the need to ask for help with the admin side of the group.  We were quite overwhelmed with responses which was amazing.  We now have two new ones, Lyz Clements here in the UK and Nicole Burish who lives in the USA.  I am sure you will find them both helpful if you need to talk,  As I said before both myself and Paul are still here, we just needed a little help and we asked and we received it.  

Right, just waiting permission from Stacie and I will post this blog.  

Oh on the denervation news.  I am so thrilled to be able to tell you that though no MRI results back yet I certainly continue to feel so much better,  I hope things continue to improve.  My next MRI is in two months time.

Go well everyone, thank you for the likes and the shares.  I love comments  too!..  

Warm love to you all.

Carole xxx