Friday, 26 February 2016

Fainting the CORRECT way!!

Tuesday was certainly NOT my best day, though it began well.  We woke to a clear, crisp sky and the promise of a beautiful spring like day.  It was one of my "good days" and so decided to try to get a head start on jobs I do before my cleaner arrived on the Thursday.  Yes, I am one of those women who like to have everything in place before Annna, arrives.  Colin thinks this is mad and tells me so often but there is a sound reason why some of us do this.  My reason goes like this ......

We pay Anna for three hours to clean.  Though our place is small we like all the skirting boards wiped down with disinfectant every week, takes time.  We like the bathrooms to be really deep cleaned.  Of course the rest follows that we like our place to be lovely and really clean.  I have always been ultra clean but when I had the line in my fear of infection grew even more so as I was in and out of hospital due to infections, or at least risk of an infection hitting my line and travelling immediately to my heart.  Colin took on the roll of cleaner and he did very well indeed.  He reckoned the time it takes to clean our place really well is 3 hours.  He is right as I could never complain when he cleaned it but he quite rightly grew fed up of his weekly task ergo we found our treasure in Anna. Through the week our home is well used, it isn't a show house but yes, it is clean. 

So it was that on this gorgeous day I did do bits of tidying, putting things away, cleaning the tv screens ( I always do these as I like them to be done in a particular way) moving clothes washed the night before etc.  To me it is the sensible thing to do.  We pay Anna to CLEAN not tidy and so if we have everything in place it takes her less time to get around and so our house has the time spent on it to make it really lovely and fresh and above all clean. Thrilled that I was still feeling good I went up to Roy's to discuss with him some details of something we were helping him with.  I sat down and did my talk on where we were up to with his new mobility scooter and his grandson came and sat with us.  All was well until I began to feel a bit "off".  We with ph will all know how this goes.  From one second we can just "go" with no warning at all and it means a stay in bed until the episode goes.  Not a nice lazy day of catching up with reading,  tv or some such thing as when we "go" we do it big style and our bodies refuse to work, concentration goes and limbs do not move freely any more.  

Feeling this sensation I knew I needed to be back in my own place so I stood up to go and then WHAM, for a teeny tiny second all went black, my knees gave way and I collapsed.  A faint, though only minor in itself due more than likely to my ph in this instance had me falling into the lap of Matthew.,a young and fit man. He didn't realise what had happened and the significance and joked "was I falling for him"  the faint was over with so quickly but I KNEW what it was and the implications.  He had asked when he had seen  me  if  I was OK and on hearing a resounding "yes" from me said "you liar" as he could see in my face I was beginning to go off.  Thank goodness he was at Roy's  at this particular time. 

On being helped home I immediately fell onto the sofa, getting undressed was no option, no strength.  Getting myself a drink was out too and so there stayed until Colin arrived home from wherever he had gone.  I had time to reflect though how fortunate I had been.  I could well have fainted onto my neighbour and as he is a very frail guy the implications could have been bad,  a broken hip for him maybe and so not a good place to dwell for me.  I have heard terrible stories of some of my ph friends fainting straight onto concrete, unforgiving floors  etc and gosh, the consequences of doing this is so bad with stitches being required at the very least.  So once again I was lucky  to have been where I was at that particular time..

Sadly my lovely day of going into town in the afternoon to do a little browsing in the beautiful weather was gone, taken away in a flash.  I had intended to maybe join Colin in the park with Izzy after school but that too was out of the window.  Colin came home, made me comfortable and then he had to leave to collect Izzy from school.  As he was leaving the familiar sound of our doorbell rang and in came Roy.  Colin did say that I was not feeling too well, Roy doesn't take in quite how bad I can feel but we assumed he would be long gone when Colin returned which we knew would not be until around six.  At ten to six Roy decided he was going home.  I had told him I could not get up to get him a drink and he was fine with this but he doesn't realise the sheer effort it  takes to hold a conversation when feeling so bad.  There were times when I could have cried.  When Colin arrived home he was shocked as to just how bad I looked and was cross that Roy had not taken the hint that I was feeling so bad and left to go home.

Colin helped me to bed where I remained for the rest of the day.  I had no food as the sheer effort it takes to eat at times such as these was too hard.  I just did nothing.  As always though I went to sleep with the thought that tomorrow would be a new day and maybe another good day, and it was!  Yeah, though still not on top form, well lets face it we never are, I was well enough to go out with Colin and do what needed to be done.  

A walk around the lake

Five of us went for a walk around a beautiful lake not too far from us, it should have been six of us but sadly Susan lost her way and was unable to join us. The talk between us was flowing , and many pictures taken of all the bird life that was going on where we were. We stood a while to admire the sheer devotion of the people in the canoes that were shooting across the water at an amazingly fast pace. We turned a corner and a fabulous site was in front of us, a wooden sculpture was being created right in front of our eyes.  The very talented man had already made the most beautiful owl sitting waiting to swoop on the mouse that was being sculptured on part of the tree trunk below.  We watched with admiration as he worked on, his blade cutting deep and evenly into the wood of the tree trunk.  Sawdust was flying around, into our hair and onto our clothes but we all stood enthralled, though Martin and Colin did take some pictures.  Again there is always a memory of something, in this instance a beautiful morning spent with friends enjoying nature at its best and then this beautiful moment in time when pictures were captured of this sculpture.  Hopefully this owl will stand proud for a great many years waiting in silence to catch its  prey.  We SHALL return to see the mouse in all its glory when it is finished, something to look forward to.  

Onwards then with our walk past the horses that were being taken out for a gentle walk around this lake and we discussed anything and everything until we came to "the house".  Now this house was built over 30 years ago.  I used to take my children around this lake when they were young and the house stood then, alone and desolate in its own gardens that stretched out to the path and then the waters.  This house has few neighbours but those that are fortunate to afford a piece of real estate around here have beautiful houses, gorgeous well tended gardens and their houses are fenced in  This house sits with all the glass in the windows covered with newspaper.  It has stood like this for well over 30 years.The roof still looks to be in good condition and how I would love to go inside and see the house as it should be seen. 

On seeing the house sill in the same position. unused sill we were pondering on why this was so, an expensive piece of property in such a spot should be lived in.  A lady walking past us with her dog told us that the house had been built over 30 years ago and had NEVER been lived in.  What story awaits us here.  Nobody knows why, the locals don't even know why.  Was it a family dispute, the house once built was doomed never to be used.  The doors never to be slammed, the kitchen never to be assailed with the smells of food being cooked and the sounds of a family talking while meals were eaten here. the sounds of children never to be heard playing in the garden, the windows never to be cleared of the old newspapers and to allow the sun to enter.  The house does occasionally have the grass cut in its garden and there must be rates paid out by somebody on this property.  So we left with all thoughts running through our heads and with the hope that one day somebody would be able to fill us in on this particular house, the whys and the wherefores of why it stands alone and unused.  A story will come to mind for me when we next have Izzy staying over but in the meantime it still stands for all to walk past and ponder .......

Julie Taylor you made me smile.

I have a friend, one I have never met but yes friend is the right word as we pm each other often.  I tell her things and she does me that we do not want to share with all the world of Facebook.  We have laughed together and cried together over things long gone.  So it was that once again Julie came up trumps the other day when she shared a post sent in by somebody else.  I decided it needed sharing with you all.

As you must all be aware by now I am somewhat of a luddite when it comes  to technology.  My lists of things to do are done on paper, my appointments too as try as I might I just can't master using my phone to do this.  Colin despairs as he patiently, well sometimes not too  patiently tries to show me what to do and this is immediately gone from my brain!.  So indeed when I saw this post it was almost the equivalent of putting two fingers up to society!!!!!! I hope you too enjoy watching this video, you too will certainly smile.       Funny Toilet Paper

Must get on with my day.  Going out to lunch with a friend and maybe a small walk around the park opposite.  May even get to meet up with my son who has at last got to the stage we have long been waiting for when his mortgage goes into just his name and not that of his long ex partner.  He is seeing the solicitor at 10.00.  This will be my cue to quite the stress that all this has caused me.  As I say always a plus around somewhere if we look for it!!!!

Go well all my friends, thanks for reading and for sharing  

Carole xxx

Monday, 22 February 2016

Whose that banging on the roof

Woke on a lazy Sunday morning to hear a constant BANG BANG BANG.  Being quite groggy as I had certainly not slept until well past 4 I was puzzled for a short while and then remembered we were having the roof tiles sorted.  The cherry picker was in the road and the men were going up  and down in the cradle.  I looked to the side of me and something was missing... Izzy, she had stayed the night as her mommy and Chris were going to a big birthday bash and staying in a hotel with all the other guests. I then heard her and grandad talking in the spare room.  I decided I was staying put for a while and snugged even deeper into the bed.  Once I heard Colin had got breakfast underway for the pair of them I decided this was my cue to get up.

We had been to her "other grandparents" to hand over the photo book of Izzy and they were pleased to see her.  I was puzzling as to how her daddy had not picked her up at Christmas when he was supposed to and as to where her Christmas presents were as they had been at his house.  Then I realised, of course he has now got a son and a daughter as well as Izzy so three chairs in the car won't go so of course Izzy is never invited.  Izzy being only five was a little mercenary and asked us where her presents were! She knew that they had bought her some.  As she said "they are my family and always buy me presents.  Well we now know where they are, still at her daddy's  house and no chance of receiving them.  This will not stop Danielle sending them presents via her ex because she can rise above the way he treats his daughter.  I do think though that the grandparents could make the effort once in a while to come over and see Izzy.  Still it is their loss but it saddens me that she misses out on part of her family.

She is fine though as she now has Chris in her life and his family.  I hope and pray that this relationship lasts as I have never seen my daughter so content in a relationship.  As a parent we do worry don't we!!

Studies and trials

Interesting and very pleased to read that since I wrote my last blog I am finding people either waiting for the same trial or wanting to do the same study.   When I was doing the DCA trial I knew one other person on it, Lynsey and it was so nice to be able to message each other with updates on how we were feeling.  She sadly lost her fight for life following an operation to shock her heart back into a natural rhythm.  I knew nobody on the last trial until I came off it!!  Then I heard from people asking how I had felt and telling me their own experiences.  This time with both of these things going on I will have somebody to talk to and discuss how we are doing.  Maybe the people conducting the trials do not want us to be in touch with others but for me this time it will be reassuring to have this choice.


The cherry picker being used to put our roof back in order had purposely picked a Sunday as they felt the roads would be clearer.  Well sods law, it generally is but today for some unknown reason to me I see cars whizzing past, or trying to and then having to make a quick brake.  This is a 20 mile zone as we have a school very close by and a park opposite us.  However we have lost track of the number of times there are people trying to shunt us to move faster on this road.  This infuriates us as we are doing the correct limit.  We refuse to be intimidated however and continue on our legal way.  One day there will be a very bad accident here as people continue to go hell for leather.  We have asked for it to be policed for a time but the answer is they are short of police.  Strange then that when there is a football match on a mile down the road the police force is HUGE.  Where do they all come from as we never see any signs of them on the street these days.  Are they all in hibernation waiting for a game of football ?  It is something that puzzles many but I think the answer will never be  forthcoming.

Will we won't we  EU

I am not going to state my political preferences re this debate, I don't  wish to lose any friends on the other side of my choice. Though if I am being honest I think you are all of the same mind, we all have our differing opinions and we need not fall out over them.  I was however talking to my elderly friend Roy who was unsure of which way to vote.  He was worried that if we came out then we would no have trading agreements with other countries.  I said I didn't think this would be so as we buy an awful lot of suff from the other countries, why would they want to stop the money train coming from here.  Think of the cars we buy from Germany alone, huge profits made there.We also discussed engineering and the closure of all the factories over here.  He felt that if we were stopped from buying abroad we would be in deep trouble  I said I felt we could start up our own engineering businesses again.  His comment was that nobody would know how to do engineering.  Of course they would, there are many people still around who know engineering,  have the qualifications and degrees.  We did it before, we could do it again without being told what we need do by the guys in Brussels, who by the way have little in the way of qualiications for telling us what we should or shouldn't do. I reminded him that we are GREAT BRITAIN.

I did notice that for all David Cameron talked about ensuring us a good deal nothing was mentioned at ANY TIME of human rights.    We need human rights, of course we do but we are so dictated to by Brussels about human rights for others but NONE for ourselves.  We see our girls groped in the streets but they can't use pepper spray as it is illegal.  Nothing is done for the perpetrators of this crime as they always state their HUMAN RIGHTS.  We see houses being burgled and cars stolen and IF we can find the offenders then once again nothing is done cos of HUMAN RIGHTS,  It should be a two way pitch but it does not appear to be so.  We need to be able to put our own slant on it and anyone whichever colour or creed has to abide by the laws of the land.  If not then take the consequences.  We see people in prison who think up some stupid reason why they should be given money by us, after all the government money is ours and yes, humans rights dictate that we give it to them.

The world has gone mad.  I remember many years ago a man shot and killed a young boy who had been in his house stealing.  The man had young daughters in the house.  When he confronted the thief, well there were two actually he was hit quite hard with something.  They then fled.  These young guys felt they were above the law.  On entering the house they were the guilty party, not the guy defending his family.  He shot one of the boys and sadly he was killed.  In truth  wish he had gone for his legs but in the heat of the battle something went wrong.  However HE was then sent to prison, not the other guy who managed to not get hit.  The reason given that the law stated then, and still does that IF the perpetrator is running away then we must sit back and let them.  At this stage, as in this guys case he had no idea quite what these guys had done to his daughters.  Of course he wanted to stop them.

When we were burgled, I have posted this before, we were told that we must make sure if we wanted to hit anybody to hit them when they were facing us.  Of course the fact that the burglar could hit us from behind was fine!!!  The world has gone mad.  Of course there have always been people not wishing to be honest and make a quick buck but nowadays it is so much more.  Life means very little so the crimes are getting worse and worse, or even if the crime is small there are many that still feel the need to carry weapons and use them.

How many times do we see thieves etc or in fact almost anyone doing wrong then go on to demand and be given money from our government for silly reasons.  Also all in our prisons asked for the right to VOTE,  This was poo pooed and quite rightly.  If we have the right to do our own dictating and not listen to the little men sitting on their fat backsides in Brussels then maybe we can get back on track.

On reading this back it sounds as if my mind has been made up and I want out of the EU.  Well not necessarily {though of course I may wish it!} but I cannot understand him going in for he kill for us and missing a fundamental right for each country to have their own human rights and not have an all over one, one that works against us time and time again.

What has he negotiated for us, nothing that can't be taken away as soon as we vote to stay in the EU. 

Finishing on a smile

Colin and Izzy are playing house.  Izzy wanted him to marry her so grandad agreed.  Marriage done they got on with the business of normal married life.  It wasn't long before I heard Colin say "typical woman, as soon as we got married you began nagging me, do this do that!"  Doesn't say much for me but it certainly made me smile. The game then moved on to playing shops and now most of my lounge is empty as things grandad bought have been transferred to the bedroom..  Now a new game has begun and Izzy is a baby asleep,  or trying to sleep on the floor wrapped up in towels, grandad is singing her a lullaby, should keep her awake rather than help her to fall to sleep.!!!!

Have a nice day everyone and thanks for reading

Carole xxx

Saturday, 20 February 2016

Good gracious - what next for my PH?

Clinic visit

Well this visit wasn't quite what we expected.  We decided on a leisurely drive in and a lovely lunch en route as I get so exhausted after these visits and we did not want the bother of having to think of cooking a meal after it.  The Plough is not too far away from my hospital so in we went and enjoyed a lovely lunch and onwards to Sheffield for my appointment.  

On arriving it was so lovely to meet up with Parris, the lovely girl I spoke of in a previous blog who had been so desperately poorly in I.C.U. just a few weeks before.  She was looking really good and said that she was loving her hickman line (note for some of those heading down this route) as she felt so much better since being on the iloprost.  Unfortunately as I needed all the necessary tests done before my specialist visit our time together was short but non the less I did get to meet her in person.  I love doing this as it brings all the folk we talk to on our forums alive. Have since heard  that it was almost 11.00 p.m. before Parris arrived home as she had to wait 6 hours for transport!  

After tests I went in to meet up with Charlie.  We laughed as I told him I was so pleased it was not David since I had wrongly sent him a message meant for another friend inviting him out to lunch on Valentines day!  He agreed with us that my ph is steadily getting worse as my walk test showed and ecg.  Where did we go from here.  I truly expected to be told I was going onto the trial drug of tocilizumab.  This is still  the case but we at Sheffield do not have the go ahead yet.  Some hospitals in the UK are already able to receive it but we were not quite there.   Selaxipag is still not available in the UK yet and we don't know when we will get it so there it was............ nothing, zilch.......   He told me that he too did not think I was yet bad enough for the hickman line and we agreed.  Charlie said he did not want me to go away and be worried and stressed about heading for the line but I told him I was absolutely not anyway.  After being on it for a year when initially diagnosed I know all the ups and downs of this line and medicine and he agreed with me, I know rather a lot about ph now so the stress has gone from me.  

Charlie is always so lovely and soothing to talk to and he always makes me feel everything will be OK.  When I left it was agreed that I would not change anything as he believes as did the other doctors that macitenten was not the way for me as it belongs to the same family of drugs as ambrisenten which I was already on. but that I would be back in clinic in three months to talk again about the tocilizumab.  He/we hoped it would be available for me then to trial.  We arrived home earlier than expected but as always we are always so weary after these visits so I did nothing, just sat in a chair to try to get some strength back.

Home for only five minutes and the phone rang.  This time it was Robin, another one of my ph specialists.  I joked with him that I hoped he was not ringing to complain about my flap jacks, I knew he had immediately gone into the kitchen to grab one when I arrived!  He said no, they were lovely but he had rung to see if I wanted to be part of the study of infused iron for patients with ph.  Now I can't take oral iron, always need  be infused so I was all ears.  My iron levels are low, but I am NOT yet anaemic.  Lots of patients with ph are low in iron and studies show that if we can raise our iron levels we help our breathing and concentration etc.  The study takes place over 6 months and involved a bike! (me and bikes do not go together well)  however it is stationary bike and I will be infused with either iron or placebo.  Not sure of the rest yet as I agreed so paperwork in the post.  

Robin then went on to tell me that we in Sheffield are getting the trial drug in April but as I would be  on this study I would need to wait till it ends and then I was promised to begin the trial afterwards.  Colin and I agreed.  If I got the iron infusions and it helped with breathing and further worsening of ph it was worth a go.  Robin said it was not an exciting study but I had read before about the advantages of iron infusions in patients with ph so was happy to do something rather than sit and let it get worse.  So there you have it, not quite what we expected from this visit but interesting.

Sexual awareness

As Izzy was running around our house after her bath naked I  told her to put some nicks on as I knew we were expecting a visitor. She quickly complied and on doing so said "its alright to have no clothes on with you cos you are my family but  I can't with anybody else"  Quite where she had heard this I don't know but as is usual I opened up my Facebook to read that it is a month of sexual awareness in America, maybe it is here in UK too, I don't know. One of my Facebook  friends had a vey traumatic time as a child being sexually abused by not one but two of her family since a very early age.   This led to her not trusting members of the opposite sex and I quite understand this.  Eventually after many years she met a super guy and he taught her not to be afraid, he taught her to love and trust again.  When at last this girl had her life in order she tragically lost this guy to ph.  She had found happiness only to have it snatched away.  This was so sad.   Here is just one of the posts shared with my friend about another girls personal abuse ......The first three lines are written by my friend and shows a post sent to her from another abused girl.

Post From Her Blog

As many of you know I'm an advocate against child abuse, specially sexual abuse. I want to share this beautiful script that a survivor shared with me.... Why? Because i do care and i care too much. 
Did you just tear my innocence? I was stripped from the love I had for you. I trusted you. I loved you.
I'm not sure you realize how this will affect me. How you've chained me for life. How difficult it will be for me to go through life with a broken heart. I never knew people could be so evil. I will eventually learn to grow a shield that protects my heart. That will block out people who love me and it will show the worst of me hoping to scare off everyone, so they can leave me. Let me be me in my loneliness. Did you realize you were hurting me forever? 
Do you know how it hurts to be broken? Do you know how it was for her? How miserable you made her feel? How she bled herself to death? How she was dead alive. You stripped her love, her innocence. You ruined her forever. I was there. I heard you. I didn't understand it back then but I can only imagine how you ripped her alive. She didn't have anyone. No one listened. No one knew but you. Anonymous

My friend has gone on to teach sexual awareness in schools and clubs. This was just one of the very many posts she has received on sexual abuse, shocking isn't it and so sad.   My friend is amazing,  She has not let her own abuse stop her from helping others.  She goes out there and tells children what sexual abuse is.  She teaches that it is not just a stranger, it can be somebody very close in the home.  I was shocked when she shared her story with me and she went on to send me some of the posts she receives from her friends or strangers., hence the one above sent to her.  One of them I believe says it all and I wanted to share it with you as it is the month for sexual awareness.  This girl is amazing in all her teachings and the fact that somebody chose to share with her quite how they felt about their life after abuse is heart wrenching, have your tissues ready but yes, it needs to be heard.  We need to tell everyone that IF they are or have been abused in such a way it is not them that is dirty, or bad, it is the perpetrator doing such things.  If we bring it out into the open many more children can be saved from continued abuse. 

Right,  end of this blog now as our Izzy is expected.  We are having her over night and taking her to see her other grandparents.  No resting for us here then!

Go well everyone and thank you for reading this  

Carole xxx

Wednesday, 17 February 2016

Do they ALL have PH?

Admin side of ph

We get very many requests to join our amazing website for ph.  However it shocks me as to just how many people are requesting to join.  Do they all have ph I have to ask myself.  If so this saddens me for I know how rare this disease is.  Is it growing or are doctors more aware and getting diagnosed sooner.  What sickens me most is when I look at the pages of the people requesting to join and I see the oh so obvious signs of the disease on the little faces of their children  oxygen being inhaled through their tiny little noses 24/7.  Quite a lot of the people requesting to join however are wanting to do "research" on us from the medical field.   We quite rightly refuse them admittance.  This group is for people to talk between themselves about their worries, or to help each other.  We have enough research done at our specialist hospitals, we need peace from it on here.  It is an amazing group full of amazing people all wishing to help and encourage one another, I am proud to be part of such a group.

Cancer breakthrough

I feel most of us will have seen the breakthrough on the cancer side of medicines re blood cancers.  using T-cell therapy' .  The  scientists are claiming extraordinary success with engineering cells to target specific types of blood cancer in their first clinical trials.  In one study 94% of participants with acute lymphoblastic leukaemia saw symptoms vanish COMPLETELY and patients with other blood cancers had response rates greater than 80% and more than half experienced complete remission.

How truly astounding is this, in particular as I saw one baby with the disease given just five months to live.  Her brave parents gave permission for her to trial this drug and she is now cancer free.  We don't know if it will return in the future, far to early to say but oh my word...... such great news and it got me thinking, ....... when will this be us.  When will we open our papers of read on the news bulletins that at last the cure for this very rare disease pulmonary hypertension has the cure.  Who knows, maybe even now our scientists researching could be looking at this T-cell therapy and adapt if for us.  It is often a cure for one illness that leads to a cure for another.  Ours is on the way,  I truly  believe this,

How far have we come  in medical sciences today to be able to eradicate such terrible diseases  Yes I know there is still much work to go on with before they can say this is the cure for blood cancers but oh for he families taking part in such trials, the joy and jubilation as they see their children return to normal lives, or even begin to have normal lives as some had never known any other.  I am so pleased for them and look forward to the day when our disease too gets such an extraordinary result as this so we too can be ph free.


Our lazy Saturday afternoon was spent taking our 87 years old neighbour to look at new cars.  Very exhausting as we had to keep shouting to be heard and very very tiring.  On our return home I immediately opened my Facebook to read a frantic message from my son asking him to get in touch, he was in Amsterdam  My heart sank as any parents would when we see such messages so of course I responded immediately.  They had missed their plane!!!!!!  Oh kids, when will they learn to leave plenty of time to get through check out etc.  The train they had hoped to catch had missed, this should have been taken into consideration and they should have given themselves more time to allow for such contingencies.  They had tried without fail to get return tickets back to the UK but the airline that went from Amsterdam to Leeds Bradford was closed.  On a Saturday afternoon this surprised me.  They tried to buy them online but at the very end when they pressed pay the screen threw then out.  They had been at the airport for five hours trying to get the tickets to return home. With  hardly any battery they did the only thing left to them, messaged their parents!  We tried well Colin did from our end and we too were booted out at the last minute,   Anna's mom tried and she too was booted out but managed to get them tickets for the following day.

Result, they had to stay another night in a hotel and managed to get tickets the following day as I assume the booking office computer was sorted out and they could collect their tickets,   We then had to go over to collect them from Manchester and take them back to Leeds as the cost of another hotel, food and travel had used the cash they had spare.

We were telling one  of our friends this and he was astounded that our son, aged 35 asked or needed our assistance.  Of  course his children would never need assistance, he had brought them up to be so self efficient!  Inside I was blazing as I knew this to be so untrue.  I knew of many occasions when he had helped out his children as indeed we all help our children, but I bit my tongue as this friend who I love dearly is  I must say one who ALWAYS thinks everything he says or does is the right way.   It is a case of do what I say, not what I do with him. I made it to the car with my tongue almost bitten through so as to contain the so many words I could have said to him.  Colin was quite proud of me as he knew how cross I was. If you are the perfect parent with the most perfect children maybe, just  maybe you have the right to criticise others but until then SHUT YOUR MOUTH UP.  It hurts to hear my son being looked on as some sort of wimp when he needed our help.  If either of his children  had been in such a position, phone charge running out after trying for five hours to get tickets home  he would have helped in any way too.  Sometimes circumstances are stacked against them when they are abroad, as in his instance.  We could not help them get home, we did out best.  Had the ticket office not been down they would have sorted it themselves

 My son left home at 18.  He kept himself and never asked for help, even when he was in real need.  He once went for eighteen months with no heat at all, he was too proud to ask for help. He is a proud young man, he wouldn't even go for social security when he was made redundant,  He didn't come home to live rent and board free, he sorted it.  He never asks for help.  Though we may have given it through our own choice over the years it was never asked for at all.   I am proud of my two children.  I try never to criticise others peoples children, it is nothing to do with  me.  I would hope that one day our friend learns to do the same.

Yet more medicines but not the kind to cure us of ph.

I  have had a urinary tract infection for a few weeks now, I take the meds and it goes.  When the course is finished after a few days back comes the infection.  i hate it  My bedside table is now littered with yet another medicine to take on top of he mountain we need for our ph.  This time a sample has been sent off to the lab to identify just which strain of uti  I have and hopefully get the correct antibiotic.  I  hate taking them though as I know we are all getting used to them and that bugs will become resistant  and where will we all be then.  We have come  so far with our medicines and now over abuse will be sending us back to the dark ages if we are not careful.  As I have suffered kidney problems from the age of 8 I know that for me to try the over the counter medicines do not work.  My infections travel up to my kidneys and I have spent many many days in hospitals whilst my then kidney infections were sorted.

Thinking of this then I was watching a programme on the tv where it said they are looking back into the old cures for things.  Science maybe has pushed us too far the other way.  One "cure" they found and I can't remember what it was for now (maybe asthma?} was just simple everyday ingredients but it appeared to work on animals.  In view of this they were beginning to open up books on medicines from many many years ago.  I know we have many advances in science now, indeed most of us with ph wouldn't be here now were we to live in those times, ph hadn't even been recognised, but I do believe there may be some value into looking into some of these old remedies.  Maybe some of you reading this used the old remedies for some things and have seen cures.  Would be interesting to read any of these.

So there you have it, quite a boring old week in our house apart from a lovely meal at our friends house.  Always lovely to be with them and we have lots to discuss and many laughs along the way.  Our turn to host next time so to that end I made yesterday a plum and apple tart for dessert, now sitting in our freezer waiting for the date of our evening.

Photo book arrived!  Colin constantly takes pictures of Izzy as she is growing up and every two years puts a lot of these onto 100 pages of photoshop books.  This means over four hundred photos in all.  They have arrived, our next episode in her life, age two to now.  We ordered three, one for us, one for her mommy and one for her other set of grandparents as they rarely get to see her.  We shall go over with Izzy on Saturday and give them the book, they will love it.

Friday I go to my specialist hospital to discuss where I go from here, another trial or the hickman line, will keep you posted.  Cakes and flap jacks made ready for the staff so roll on Friday.

Go well all of you and thank you for reading this blog.

Carole xxx

Thursday, 11 February 2016

Giving up PH for Lent - 40 days without, great job.

Giving up PH for Lent

On opening my Facebook page I read a post by our very own Catherine Makin, a young girl with this disease.  I note that she said as it was coming up for Lent where it is customary to give something up for 40 days she has decided to give up PH.  Obviously very much tongue in cheek but wouldn't it be great.  Imagine if just for a short period of time we could live without this disease.  I am sure most of you would be with her on this one.  I myself can't really imagine just how it would be to breath with healthy lungs.  I think I would feel quite heady for a time as my body gets  used to having all that oxygen flowing freely around in my blood.   Great idea Catherine, pity we can't do it but thank you, it certainly made me have my first smile of the day.  

R.I.P - Karen Farminer

A post by Jez, the husband of Karen hit us all with a huge shock on Friday.  He told us of the death of his wife that afternoon at her exercise class.  For those that knew Karen, either by meeting her in person or talking to her on Facebook the news was so unexpected and it took some getting our heads round it.

Karen was quite a force on the ph forums and spoke at great lengths to many who asked advice.  She was never stinting in the time she gave to anyone when explaining or sympathising etc.  A ph fighter for almost 30 years there was little that Karen did not know about her own form of ph and so consequently could answer many queries and calm many a persons worries when they asked her the question.  At the same time she did not make herself out to be the oracle, she would often give advice but follow it by saying expert advice should be called for and the advice acted on.

It is fair then to say that Karen was loved, looked up to and admired by many of us here in the UK.  The horror of her death has hit many of us badly {myself included}  of course because it was the last thing anyone believed would happen to Karen.  Our thoughts go out to her family at such a sad time but I believe Leanne, Karen's daughter, said the correct thing.........She said she was going into work as it is what Karen would have wanted her to do.  Though it will be very hard for her she has gone on to do just that.  Leanne knew her mom so well.  We in the world of ph knew Karen but obviously never as well as her family.  Seeing just what Leanne wrote though prompted me to agree and to say to you that yes, of course our world has been rocked, of course it hurts like hell to lose such a force on our forums and of course we are scared about who it will be next..... human nature to feel and think this way. However I must say I agree with Leanne.  Karen would not want the world to stop turning.  She herself saw many deaths due to ph over her 30 year span of having ph.  She didn't give up, give in or lose faith that she would live to see another day.  Karen would be telling us all now to stay strong, don't despair and above all else we need to keep going!

Karen saw many new drugs come on the market in her 30 years of this illness.  Her medicines changed for better ones as and when the need arose.  Remember she fought for 30 YEARS!  Now if that isn't a great legacy to leave behind then I don't know what is.  Now we too will keep going, change meds as and when we can for the latest better drugs and keep as healthy and stress free as we can until the cure.  We must do this for ourselves and for Karen, to show we can follow her lead and remain strong no matter how many odds are stacked against us.  Rest in peace Karen, the ph forums will be a lonelier place without you xxxx

An update is that the Coroner is not happy with the reasons given on death certificate and wants a post mortem.  I am sad for the family that this delays the moving on process.  

Jane Taylor

We have had news that Jane Taylor is very poorly in intensive care.  Her lungs are badly damaged by another disease and on top of this the infections that are going around have hit Jane.  We are asked to NOT send private messages, though we can of course write to her on the thread her husband made.  It goes without saying that we all wish Jane well and a speedy recovery.  I believe that yesterday things were moving in the right direction ,though she is still very very poorly.  

My bust ...... again

Well here she is in all her glory, though not of course finished.  Now remember she is sort of a caricature so of course her neck is not in proportion and her face is not the prettiest.  On going into class last Monday I just obliterated the face I had done, cheek bones, brow and all and began to rebuild her.  Considering I am a complete novice who until this class had never worked with clay, even plasticine and play doh were beyond me I consider it is not too bad a job.  She will look totally different again in a few weeks time when I come to paint her.  I want brown hair with highlight in for her and a lovely coloured blouse.  So much fun.  Not sure quite what my next assignment will be but I know I have things to paint yet and I want to make a couple of bowls so maybe I will just concentrate on these before I move ahead of myself.

Wherever you may be son .........

My son is 35 years old today.  How the time has flown.  I remember the day of his birth so well yet can't remember what I had for lunch yesterday!  I have no idea where he is in the world right now.  His delightful girlfriend Anna is treating him to a few days away/   It may be abroad but maybe not.  It was a secret.  I know he wasn't told where he was going.  Wherever you are son have a lovely day and know that I am thinking of you.  You have given me many headaches and heartache over they years but the joys far outweigh all of these.  I am proud you are my son.  

Hitting my pocket ... ouch!

Izzy, my grandaughter has been taking swimming lessons.  She does pretty well but is reluctant to get her face wet.  Everyone who swims knows we need to do this.  I have used bribery, yes I do confess, bribery to try to get her to get her face wet.  Talk of new dollies seemed to impress her but obviously not enough to make her go under for long enough and with her eyes open.  Grandad has many times had his goggles on in the house and she hers whilst they played games of diving to get her used to them but to no avail.  I decided to change the prize.  Now I certainly do not advocate a prize every tine she achieves something, far from it but this was such a stumbling block for her regarding swimming.  She can swim very easily on her back and quite a way on her front, armbands were left behind long ago but we needed her to move on a stage.  The bribe was a bird that talks and sings and answers questions.  Result. yeah she dived down four times and each time picked up the object.  At last we can move forward with this oh so necessary learning curve of swimming, well done Izzy.  You will read these blogs along with the private journals I write way in the future and see just what it meant to your old grandma!

Waiting our turn, oops.

I attended the warfarin clinic yesterday and had not made an appointment as I went a day early.  The result meant rather a long wait as obviously all that come after you go in before you if they have an appointment.  I was getting rather bored and indeed was not the only one as the resultant piece can tell you.  A gentleman sitting not far away from me was nodding off, I was watching his head slump and then jerk awake with a start for quite some time.  Taking my eyes off him for a minute as I was then talking to the lady next to me I heard a cry and turned to see the guy was slowly falling to the floor.  Well it appeared to be slow but of course it wasn't.  The cry had come from the lady sitting next to him who had tried to stop his fall but to no avail. He went down with quite a bump and on hitting the floor woke with a cry of pain and astonishment.  Of course staff came from all directions and a chair was brought in to put him in whilst he was wheeled away to another department next door to check that he was ok.   Another fifteen minutes went by and just as I was thinking I would not find out if he was fine in he walked.  Oh the relief as he was quite elderly and I feared a broken hip or some such thing.  He smiled and actually took a bow and asked if we all enjoyed the floor show!  What a trooper he was.  He was then immediately escorted into the cubicle for his blood tests, whichever they were.  I do hope he feels well today as often the following day after a fall we feel all the muscles ache and bruising comes out etc.  I hope I see this gentleman again in clinic, we will certainly have something to talk about. 

Well enough from me now, the day begins with exciting things such as washing etc!  I shall then however walk down to the Art class with my hubby and continue on down the Hebble Trail, a beautiful place to walk and then catch a bus back up the hill when I reach the bottom.  I hope you all have a super day, we need to live each day filling it with many happy things. 

Go well my friends and thank you for taking the time out to read this blog, it means so much to me.  

Carole xxx

Wednesday, 3 February 2016

I WONT let this thing beat me!!!!!

On a downward slide

I haven't been too well lately.  Each day I wake and think that I will begin the ups of the roller coaster of ph but as yet it doesn't appear to be happening.  I know my levels are rising so I had hoped that the trial I began would help to lower them but it ended badly and very early.  I have since "spoken" to three others that were on the same trial and they too were brought off the trial due to breathlessness more severe than before beginning the trial and other issues. Unfortunately for one of them she still feels really bad whereas for me I certainly almost got back to where I was pre trial.

I am now playing the waiting game to see if I can get on my next trial.  We did discuss it and indeed it was my specialist that said that as there was now nothing else for me other than back on the hickman line I could trial again.  I go back to have talks on the 19th of this month.

Now I am not complaining about my health, indeed I consider that I do pretty well considering I have ipah but nevertheless we all want a good level of health and it bugs me that I do not.  I get very tired quickly though not of the type that I can sleep.   Just an overall weariness.  It would be so easy to just give in and sit in a chair and do nothing but I try to do something every day.  I am not talking about running marathons.  It may be just a trip to the supermarket, out for lunch or to visit a friend but I am so looking forward to when we have the cure.  I pray it will be when I am still able enough to enjoy the outdoor life such as we had when we lived in Spain.  It would certainly bug me if the cure was to come when I was too old to enjoy it!

I have a cold at the moment and we with ph know that just a simple thing like this can make everyday tasks so much harder so I suspect that it is that that is the problem and I am looking forward to getting rid of the darned thing so I can move on.  In the meantime I continue with the salt nasal spray {thank you so much for the recommendation Karen Farminer} as we cannot take over the counter drugs for our blocked noses.  I am aware that I smell very much of Vic too as I am rubbing it liberally into my body.  I had read that applying it to the soles of our feet and covering with socks was a great "cure " for coughs and colds but alas for me it does nothing but make all my bedding stink to high heaven of the stuff and produced a very definite compression in my legs and ankles.  

What with the cold, the smelling of the vic and sometimes albas oil and an outbreak of goodness knows what on my face I look and smell a mess!  I feel that somebody should walk in front of me with a bell shouting "unlearn unclean" so that people get out of my way as indeed it does appear that I have some sort of dreaded plague!  

Oh well, on with another day and hope that this time the roller coaster has reached the bottom of its slippery slope and it begins the climb back up to the top with me in it.

My bust

Did this grab your attention?  It was supposed to!  Not that there is anything special about my bust but the one I am talking about is not mine exactly, it is something way better!  I am busy making a bust in ceramics and I have to say that the hair at least looks really good.  I have to work on the eyes and nose as they do look rather stupid even if I say it myself.  { I am told we are not allowed to say stupid, we must say silly but hey ho ...} I would have posted a picture of it but I don't know if you will be able to see beyond the silly eyes and so I will wait until my next lesson in a weeks time when I shall rectify it.  I have some clay here so I shall practice and practice and hope that I do a better job of it next week'

My teacher Helen is really good and directs me but she makes sure I do it myself.  I did suggest that I sat at the side of her and watched her make it for me but she wouldn't!  So at least when I do post a picture here you can be sure it will be all my own work.  I shall post one next week and then begins the long process of it drying before I can paint it and fire it.  

I have so enjoyed making this but once it is finished I really need to get on with making another couple of bowls, very easy to do as I have promised them to people.  I don't know what my task will be after that but I can honestly say that I get so much pleasure out of these classes.  Even when I feel rough and it seems an effort to go once I am in the studio and sat down with whichever project I am working on the time flies by.  The friendship and camaraderie of the other girls is great and the sense of satisfaction I get is amazing.

She has left us!

We had Izzy staying with us for eight nights as her mommy, my daughter was going skiing.  Now since Izzy was born we have always had a week or two when she has been solely in our care.  We generally would take her with us on a cruise.  My daughter is a single parent who works extremely hard to support herself and Izzy and for us it is so lovely that we are allowed this time with Izzy to make wonderful memories,

This time we did not go away, we stayed home as Izzy is now in school.  It brought back so many memories of my own two when I was helping Izzy with her reading and I devised a way where she was learning without feeling pushed.  I was so proud that when her mommy came home Izzy could show her just how much she had come on with this skill.  Grandad was in charge of helping her with other tasks set out for her homework and between us I think we did a great job.

She is a very caring little girl and understands my limitations.  Indeed one day when it was just too hard for me to cut up and eat food she was watching me carefully.  As she saw me put down my fork with the words that I just did not have the energy to eat more she got down from her chair and held out her hand to me.  She said "come on grandma I will help you to your bed"  She then proceeded to lead me into the bedroom where she then instructed me to lay down and get some rest!   The following day when I felt much better {mornings are alway my best time and the times when I get things done} she called out to me that I must walk carefully and take my time.

She was of course pleased to see he mommy on her return, especially when she was told that she now needs to take skiing lessons herself ready for her holiday skiing next year.  One very excited little girl left us then to go home to where she belongs, with her mommy.  The house seems to be so quiet now, though we still have her two days a week when school is finished until her mommy collects her.

I must confess though that it was nice getting the house back together again as she always had a project on the go or dollies prams or scooters all over the house!  They are now back where they belong too.

Kath Graham  - Author!

Many of my ph friends on here will know Kath, either personally or through her blogs or the work she has done to raise awareness for organ donation.  She always said her wish was to write a book and she has done it! This is about to be published and the book is about her journey with ph, living with it and coping all the way to her at last receiving the gift of a heart and lung transplant and her recovery since then.  This will be available to buy on Amazon shortly and is called  LIFE IS FOR THE LIVING by Kathryn Graham.  Below is a picture of Kath's forthcoming book, will send you a link when released: -

I am sure it will be a great read, though in places a little dark as we see her go through all the ups and downs we all go through on this journey.  Not everyone is able to or fortunate enough to be given a transplant but Kath was one of the few who received her call and consequently her new heart and lungs.

I am so pleased that Kath catalogued her journey so well as she also shows all the aspects of research most of us are involved with when we have such a rare condition.  We all act as human "research rats" as our blood is taken and sent away to be analysed for many things, genomes being one of them.  In this way she shows that we all play a part in trying to find the answers so desperately needed to enable the researchers to find the true cause and to stop it in its tracks or to define which of us carry the gene that is the cause of one form of ph, that being familial.  

So it is then that Kath has written a book that in many ways reflects the life of most of us living with this condition.  It can give others an insight into just how hard life is with ph and what we go through to try to live a "normal life" 

I have known Kath for over five years and we met at a conference for ph.  We have kept in touch ever since and I have watched her health deteriorate to such an extent that I feared she may not be able to be transplanted if the call ever came.  Fortunately the call did come and she received the most precious gift of all, life!!!!!  Since then she has gone on to become an amazing ambassador for raising awareness about organ donation and will continue to do this task for us all.  I am so proud to be able to call her my friend.  I beg you to buy the book and read it.  It doesn't matter if you do not have ph.  There may come a time in your life, or the life of a loved one when you or they may need an organ, please read the story of how one persons life changed through this gift.

I can make a bet here that almost all who read the book who have not signed the organ register will quickly sign online after they have read it.  Remember if you would take an organ you should be prepared to give one too. Put yourself or a loved one in this dark place where the only hope of a future is an organ, one given by a very generous person. not a pretty thought is to think that you too could be in this position.  An even worse thought is that were you to ever be so poorly as to need an organ you would have to sit back and know that many many are being burnt every day when they could keep so many alive. Just reflect on this for a moment, not very nice thought is it. 

I feel very honoured to know personally three writers now.  Sue Reid writes book about history, usually for school children but I have said before grown ups love them too.

Another great author that I know personally is one called M Jonathan Lee.  His books have been likened to Stephen King novels.  He gets great reviews such as "completely compelling" and "I need more from this writer" to "I have never read anything like it" 

Hazel Roberts who has sadly passed also wrote books and these can be found online.

Kath Graham now joins this list and I am so proud to be her friend.

All for now as it is around three in the morning.  I need to see if there are people on our ph website who want to join our group so will do my admin now.

Go well each and every one of you.

Carole xxx