HO HO HO - A SORT OF GIFT

Royal Hallamshire yesterday

Such a long day.  To ensure we arrived in good time as we were told the roads would be very busy we left home at 6.30. Yes we missed the traffic and arrived in time to have breakfast in their cafe.  We went onto the ward early so that I could get to talk to Patricia Nelson who is a patient there at the moment. I had barely spoken to her when I was called out to begin all my tests 40 minutes early which was a bonus.  

I did pretty well in the breathing and the gas test scoring higher than they predicted which was a bonus but let myself down badly on the walk test. This was because my knee on the right side where my back is still bad just kept on caving in and I was fearful of a fall onto their hard floors. A fall is not something I would relish at all.  Anyway it was noted as to why I had stopped and even so my score was not a bad one.

On then for bloods and ecg and then a wait for my MRI.  This MRI was different to the norm for me. The machine is one I have never been in and is bigger that the normal one.  This was being used to get a 4d flow to see what is happening with my heart.  The whole process takes way longer than the normal one but it was so cosy in the tunnel and the time just flew.  We were advised that it would take some time to process these and so back to the ward to play the waiting game.  I did get to see

Alex and Jen for some form filling etc and was to wait to see Prof David Kiely.  

I was anxious as we were to collect Izzy from school but the time just kept rolling by.  Anyway we rang Daniele who said she could collect her so we were able to wait without the panic.

So some good news and some bad.  Yes my heart has deteriorated as we all expected but my lungs were coping pretty well with this though my resting heat rate has gone back up again which I am gutted at.  We all went into David's office and Jen was able to point out what was happening when my monitor took account of all the abnormal things happening with my heart.   We all agreed that maybe it was due to my back and the pain was pushing up all of my levels and I was having more heart episodes through this.  Jen was quick to point out that I had said having the monitor put in place did not hurt a bit and Alex was quick to shoot back that it was because he had done far more invasive things to me which were painful so hers would seem a doddle. 

  

On then to my levels in my lung which though they fluctuate quite a lot had come down over the past ten days.  A good sign we all felt.  Still though was the deterioration to my heart which needed to be sorted sooner rather than later when the meds might not just work as well with a failing heart.  So yes selexipag it will be in around eight weeks time.  They want my back to be better and pain free before I begin another med that can cause some side effects. We all agreed that the denervation had helped a lot with stopping my pressures rising over the last two years.  

My bloods looked ok and my BNP was measured at 6 which is not too shabby for a patient my age, height and with my condition and weight.  It was seen though that my white cells were rather low a lot of the time and they asked if I had been poorly all of these times.  The answer was no so quite why they drop so low I do not know but I shall ensure I take vitamins which should help to push them up a little.  

So was I happy.  Well yes and no. Clearly I would rather we had not seen a change for the worse in my heart but thankful and grateful to those that trialled selexipag and all our teams that pushed for us to be allowed it.  See we need to work together to get things done and this is once instance that all the hard work being done by the many and the lovely people that trialled it just could have given me a chance to help my heart to recover for a while. So from the bottom of my stressed out heart I thank you all that helped us to get this medicine.  

Now it is back to the real world where I really want to get on and do things on a daily basis instead of just doing very little ` and very rarely.  I hate just sitting and feeling useless and I hate that my back is still painful but  shallop push through until I begin the new med.

Cla ire Jones

I feel sure you were all shocked and sorry to hear the news that we lost Claire to this terrible disease. She was way too young to die and she was such an inspiration in the world of ph as she showed her determination to continue her work tuning pianos despite having an oxygen tank and feeling rotten.  She would not let her illness define her and most of us saw her on the television where they were showing her going about her work in Wales and always with a smile on her very pretty face.I am not sure what happened as I last saw a post of hers in August but clearly something changed in her condition and we lost her on December 13th.  Such a sad day for us all and the world of ph and I am sure we all send our condolences to her family and friends.  Claire was a remarkable lady and she will be missed so much. 

Will I make it.

We have been invited out for an Indian meal tomorrow evening and I am hoping I will make it as I do love the restaurant and the food is divine.  I will see how I go but it would be lovely to get out for a while.  Whatever even if I cannot go then Colin will have a nice time and will come back and regale me with all the news and happenings going on.

So another blog with nothing of interest to tell as  clearly am not up to doing much but  thought if I sent it out at least you will know where we are up to with this silly heart of mine.

Swell it is that time of year where lots of parties are goiing on and lots of fun to be had for those that go mad at Christmas!  Do not work too hard ad remember to let others help you in the kitchen if you are playing host.  

With that I will sign off and hope my next blog is far more interesting than this one.  I just might have improved so that I can at least get some exercise in which would be lovely.

Take care one and all and mind how you go if we do get the snow as forecast. 

Warm love

Carole xxxx 

DOWN BUT NOT OUT

It is certainly true that the last few weeks have not been kind to me in the least.  For quite a while I have felt a change in my pah and that was confirmed by my specialist who said my pressures had risen to a big degree and they were just not coming down.  I think I already knew as we get to know the symptoms and mine were not improving.  On top of that my heart rate (resting) had risen by quite a lot and again never moved downwards at all which was not a good sign.  This was a huge blow but I knew I had the best team working with me and they are trying to get me an MRI appointment to see just what is happening to my heart.  

Selexipag was talked about and it may well be that is the best chance to get my resting heart beat to lower but there are so many ifs and when's right now that we are in a sort of limbo. On the good side for me is that as I have both the chip in my pulmonary artery and the one measuring any abnormalities in my heart at least they are being checked daily which is quite reassuring.  

On top of that we went on holiday with friends in our motor home and I lasted only a night before I just had to come home.  Somehow before we went away I had done something to my back which  I thought would just go away in time.  I was so very wrong and one night in the motor home had me almost screaming in pain.  With a heavy heart I left to return home which was very sad as I had been having a nice time.  In fact I had just had my first ever flavoured gin ( I am not a drinker but decided to try it and loved it) and the holiday seemed set fair for us. My back swiftly worsened until I could no longer put my right leg onto the floor, I had to hold onto surfaces and hop, excruciatingly painful.  

A visit to the doctor was a must so off we went.  Now it is known and on my records that I cannot take opiates at all. They make me so incredibly ill and no amount of anti sickness medicine can combat that at all.  I have it imprinted on my medical alert bracelet too so well documented. The doctor examined me and said I would need to take co-codamol and I very quickly refused telling them to read their notes. She however was adamant that despite my notes I would be just fine with these. Now you might ask me why I listened and accepted the meds. Well believe me I was in absolute agony 24 hours a day so was willing to believe anything that would stop the pain. This was the beginning of a nightmare that is still to a lesser degree affecting me now.  

Following instructions to take with food was difficult as due to the pain I could barely eat.  However I forced down food and took both the pain meds and anti sickness ones too.  This began a nightmare I never wish to endure. The sickness came, every sip or bite of food came straight back up or if I was fortunate and thought I had kept it down it would come up whilst I was asleep and I would wake to find myself throwing up all over the bed.  It did not have a chance to ease my pain so it was just one big nightmare.  Sick bowls were placed all over the house and still l sometimes  I could not make it to reach one. Three o clock in the morning was the time when I would be screaming in pain whilst Colin would try to help me to walk around the house in the hope of relieving the spasms but that was no good either.  I must admit I felt a despair so big I do not believe I have ever felt before.        

We returned to see another doctor who insisted I continue with the meds but we were just as adamant that could not happen.  By this time I had lost eight pounds in weight as not able to keep anything down despite not taking the meds.  We rang my specialist to tell him what was happening as my pah meds were coming straight back too.  He was very concerned and made sure that certain blood tests were done to check potassium levels etc.. In the meantime I was referred to an MSK specialist who was very lovely and very thorough in his examination of me.  His name was Sam and he was very concerned.  He said he would send me for an MRI urgently but that even so it would take weeks to come through.  I despaired so we agreed that we would go for one privately at a cost of just under £1000.  We had let our private health insurance lapse one I was diagnosed with pah as it will not cover it so we just let it go.  I was also refereed for urgent physio too.  By now I could see no end of this torment.  It seemed my body was letting me down in so many spectacular ways. I also would find my bed covered in blood on waking and i was having many nose bleeds.  A trip to the INR clinic showed I had a INR level of 5.8.  It seemed nothing about my body was working  

For those of you with the heart monitors I must confess I was clicking mine rather a lot throughout all this and it was reassuring ( in an odd sort of a way ) to learn that all of these clicks by me had been monitored and checked out so you are blessed to have such care.  I was told that each time I clicked it I really had had an abnormal happening with my heart so it is good to know they could check them all out without seeing us.   

Well done Michelle Wood who had hers fitted yesterday.   I hope you feel a little more reassured now.                                      

Despite not taking the pain killer meds as they were clearly not doing me any good but in fact harming me greatly the sickness just did not stop. Every bite of food just came back up.  

A MRI scan appointment was put in place but they needed a referral letter. Colin took the very detailed report from the MSK specialist into he unit.  This apparently was not acceptable as it needed to come from my very inept doctor. Clearly this takes time to organise so I lost the place for that scarn whist we waited for them to send the much needed letter.  My appointment was moved to today but I received a call yesterday on my way home from the physio.  This was from the private scan guys who said that as I had said I had two chips in my body, one in my pulmonary artery and one near my breast I needed to let them know the numbers of the chips and all sorts of detail I just did not have.  In frustration I asked them to let my appointment go and I would get back to them when I found out the info. Though I know I can have MRIs with the chips in they of course have to cover their backs so I do understand. 

Once I got back home I discovered to my horror that I had also lost my engagement ring.  The weight loss would have accounted for that and to say we were gutted is an understatement.  No replacement ring can ever replace the original one so yet another blow.  Of course we have rung up the hospital and asked them to look out for it but my hopes of getting it returned are almost zero.  

Last night my pah specialist rang to see how I was feeling.  He said he could furnish the clinic with all details needed for an MRTI  but I said lets just wait a while.  He said he could see by all the readings they were getting for me that I had been very very poorly.  I said I assumed it was all because of the pain being so intense all my other issues but he said no, sone would be because of my pain but they were quite confident that some was because of my pah rising as quickly as it did and my heart rate not coming back down. So we play the waiting game and some small part of me thinks I have done ok to make it so far but another part of me thinks heck - I have not made it far enough.  I have a little girl Izzy, my grandaughter that needs to see more of me.

Izzy has been a star. She comes around and helps me with my physio exercises and makes sure I have things to drink close by me. To be honest she has made me want to keep going when my mind was saying enough but that was the pain, not the pah. I still have lots to do re pah as they are getting loads of info from both my chips and trials and studies are coming up all the time for us.  

So I wish you all well and  will shortly be returning to facebook. I do thank all for the messages that were sent to me and phone numbers if I wanted to chat. I thought these were so sweet but to be honest I had felt so poorly I just wanted to isolate myself. I am however coming out of that slowly and will I hope soon be pain free Regarding the pah well I will work with my doctors and let you know the outcome when I know more myself. I really miss exercise but right now anything like that is out of the question. I will return though one day to it as I know it is very important for us. 

Warm love to you all

Carole xxxxx

WHERE MAYBE I BEGIN ANOTHER MED AS FEELING BLURGHHHHH RIGHT NOW

To be totally honest I have not felt the best for a few months but as we ph fighters are tough I have tried to carry on without showing the outside world. I still achieve most of my daily goals as I push myself but then the price is a very early night or even afternoon in bed.  I tell everyone who asks I am doing OK and I am - sort of.  I know I am blessed.  I see many in such a worse place suffering with this but I also know my own body and I know how I feel.  My right lung is quite painful now but not so sure of why. My breathing is getting more laboured and you know how it feels when it just seems too much effort to do that so small thing - well I have now hit that mark.  I am hoping it is that I did so much on holiday it is just my body's way of getting me to take a break but we shall see.  If no improvement soon I shall definitely discuss adding another med, maybe the selexipeg that we did discuss before.  Yes I know the awful side effects having had the infused version at the beginning of my journey but I also know if I can bear to ride out the storm the future should look more rosy.  We shall see.  I do have an appointment coming up next week to check the new chip inserted so I shall discuss this with the team when I see them.  I know to look at me I look fine, to talk to me I do not let it show but oh my word inside, well I know how I feel.  Who knows maybe upping my water tablet could be the answer though how anyone can wee out more than I do is beyond me with the dose I take now.  

A good friend Taylor who lives in the USA contacted me to say that one of her young friends, a married mom with twins has been diagnosed with ph. Clearly they are all gutted but I know if she comes onto our closed pah group she will get much support from our community who will do all in their power to help, advise and comfort. I get so much support from the PH UK Support group here and other ph groups I have joined. We are all in this together.

Holidays and friends

We saw so many friends when we were away which was really nice and a chance to just sit and catch up was truly lovely.  We feel so blessed that all these friends take time out to add us to their already overflowing schedules and meet in new places to us to show us how things in Javea and surrounding districts continue to develop.  I am always happy to see that Javea continues with its rule that they will NOT allow high rise buildings.  It is such a peaceful serene place and the views are amazing, high rise would take all of this away.

Freda and Arthur took us to a new bar for us on the 29th floor (no not Javea as I have just said no high rises here) but in Calpe.  There we met up with Ro and Tony and spent time on the amazing sun terrace at the top of this new build hotel..  The views were truly stunning looking all over calpe and the water,  it was a great experience and one I hope to do again.  Afterwards we went out for a superb meal and I swear my waist band grew two inches.  

Lots of meals and meet ups followed and my lovely friend Christine who I did all of my genealogy research with cooked us a most delicious meal, so good I have taken the recipes and will cook them this weekend when we have our friends over from Canada.  I am sure they will love it. 

We went with Christine to the Marina in Denia where the 26th largest privately owned ship in the world was moored.  It looked amazing and by the side of it was just one of the two small ones owned by the same man but costing a mere 8 million and 5 millions respectively.  The main ship is called Lady Moura and the name and emblem showed in mighty splendour on the front of the ship is made of 24 carat gold.  It cost 250 million to build.  At the time it was the 8th largest privately owned ship in the world but time has pushed it lower down the ladder.  

At the same time as we saw this ship we also saw them removing the last of a ferry that crashed into the harbour wall when sailing in.  There were many people on board and it must have been so scary.  It took three weeks to get the cars off, some damaged beyond repair.  It was decided the ferry was old and so they dismantled it piece by piece in the harbour.  The cranes and dismantlers must have been busy day and night with the divers working below water level by the time we got to see it,.  I reckon the captain would have been in a bit of bother!!

One really good friend Rhonda did us the best service she could ever have done  She introduced us to the new owners of our Villa we had built.  We were unaware that the people who bought it after us had sold it on but she knew and got in touch with Paul and Jules to tell them we were on holiday and would they like to see us.  They were more than happy to show us around our old home and it was interesting that we could actually show them some things about it they did not know!  They were both anxious that we would be ok looking around as clearly the villa meant so much to us that changes can sometimes hurt.  We are not that type of people though and to be honest there was no changes really just furniture etc.  We all got on soooo well we felt like we had known them both forever.  On going down from the villa to the apartment I said how we had loved sleeping here when the villa was full of guests that were elderly so we let them stay upstairs in the main place while we were more than happy to decamp to our apartment. I said how we always came around to look at the villa when we were on holiday and I used to wish we were still in it.  To our great surprise both of them said we must stay there the next time we are over - in fact the most generous offer of all is that we house sit their cat when they are due back in the UK early next year!  Now they know nothing about us but trusted us with their precious house. We were overwhelmed and I must confess to crying a little.  However as we just might be facing Colin having his fourth hip op we cannot give any dates and times until he sees his consultant next month. Should all be well though it would be an honour to cat sit and take care of their beautiful home. We can assure them it will be left in good hands, the villa and the cat will be spoilt as Colin is a cat lover.  

The apartment we rented this year was the same one we had last year but my oh my the change.  We thought it would be for the better as she told us she had decorated all throughout.  We had hoped she had got rid of the many vases - huge ones - of the plastic flowers but sadly no, they  remain in the apartment, lots in every room.  The cleaner had certainly not done a good job of the cleaning.  The three of us ( we took a friend) all felt the bedding had been slept in before us so we washed them all, plus the floor was so filthy we needed to sweep and wash all the floors.  Kitchen surface needed cleaning before we could use it and so it went on. There was an issue with the water pumping out into the toilet all night, such a waste of water but that could not be resolved whilst we were there.  The owner was gutted to hear this and told us she was in Spain and would check it out.  She said she had a few complaints about her cleaner and clearly needed to find another.  Anyway she checked out the place when we left and thanked us for leaving it in such a lovely clean way.  She told us she was replacing sone of the things that were so awful, sticky and tacky as she had a five month let coming in.  Such a shame her cleaner was not up to the job as the place itself is lovely.  Anyway we had a smooth journey back to the UK and home.

Home to reality

Well back to hospital visits, MRI for Colin bloods and check ups for me.  Life goes on and we quickly step from holiday mode to getting on with it mode.  

The house is fine and we actually had the architect come around unexpected yesterday to take pictures. Fortunately we are both naturally tidy so all was in its place and he took many pics for a brochure and he promised to come back and take some with his wide angled lens or some such thing and that we could have copies.   He loved how we had finished the house off after the plans were handed over.  I now need to write a testimonial about his company and the great design he did for us.  We continue to love living here next door to our lovely family, 

Today we have a guy making us a barbecue area and sitting area just behind the house.  Then the last thing will be in two weeks fencing and we should be able to say ENOUGH, all done.  

The fox or foxes as there are many did no damage when we were away but I do fear most of my tulip bulbs planted in our beds have now gone for food for the squirrels.  We shall see in the spring when they emerge or don't from their beds. 

Halloween

First to call for Halloween, Izzy and brother Harry (I think) heading out for the evening.

So back to reality with a bang though we do have a holiday in our motor home coming up with friends. We will take up our life of normal every day stuff. Izzy starts her piano lessons again next week plus she has moved up to yet another grade in her swimming class. We take her to these and we love to see how she progresses. She is just so happy to have us home where we belong she tells us. Though we face timed her every day she still likes to know we are just next door.  

Am going now, I feel rather sick!!!!!

Warm love

Carole xxx

MY NEW COMPUTERISED PIECE OF EQUIPMENT IS FITTED

Minimal invasive phentotyping of arrhythmia in idiopathic pulmonary arterial hypertension

Quite a mouthful for sure but I am so proud to be able to say that I have had this fitted and there are many ready and waiting to to have theirs done go so before long we will see more and more people joining this study. I know Mandy Vickers is waiting for hers as is Andy Sweeney. Just let me tell you a little about how easy this was.

I met Alex and Jen in the coffee bar of the hospital where we discussed life in general etc and we moved down to the bowels of the hospital when the room for the procedure was ready for us.  All was so smooth.  I signed the consent forms and I was told how inserting this device would be carried out.  The device is small and slender and very neat.  About the length of an aaa battery.  I was given a  device to hold and feel it etc and was amazed that this would be capable of teaching our pah specialists so much about our hearts whilst struggling to live as normal a life as possible with pah.   

Jen explained that she would use a scalpel to cut a hole in my skin and then something she called a push to make a hole large enough to take this device.  Once the hole was made she would then push through the monitor and then stitch or use sterra strips to close the insertion hole and all would be well.  She also said a sheet would be used to prevent me from seeing what was going on. I asked if I could see as things like this fascinate me.  Jen was a little wary until she asked Alex if he thought I would be ok and he said I would be fine watching it.  I have always enjoyed watching things on he monitors like the cardioMNEMS and the insertion of my hickman life etc. 

All  that was to no avail though as once i was laying dow with the blood pressure and ecg monitors going and I was covered on the site with sterile sheeting it was impossible for me to watch anyway.  I could not see at that angle.  However Jen was great and showed me the scalpel she would be using and the pusher etc to form the hole.  All was well.  An injection to numb the site that I did not feel at all and away we went.  Once I was sheeted and numbed the procedure took about two  minutes and it was done!  Last thing was some sterra strips to bond the site back together and a dressing that will stay on for a week  Up and dressed again it was back out to see the monitor that will sit at the side of my bed to take readings and send them off to be checked and monitored.

The other device I have will go on a lanyard around my neck and under my jumpers etc and be used if I am out and have any problems, palpitations etc.  I will just press it to my device and then let the team know of any concerns.  So with that and my cardioMEMS machine I am truly computerised at last. I have a card  to carry with me saying what has been fitted and can be shown at airports etc as it will set off a monitor or hospital admissions and so on. This was such an easy procedure to have for such an important device.

This study will go on for three years.  After that though it will be possible to remove the device it is highly likely that most will just leave it be where it is. After all the skin and muscle will grow around it and it will take more time to remove it than it did to put it in.  It will not cause any harm so I for one will just leave well alone after the study finishes.  If anyone is having it done and wants to ask me any more questions then please do not hesitate.  

We discussed the cardioMEMS and all agreed it was time to up my game a little now and take more readings daily so they could see my pressures at different times. They are also looking forward to seeing my readings once I am off the airplane when we go on holiday to see any changes in lung pressures. Alex fancies doing a study on the effects of air travel and ipah patients.  Thus will give him some insight.  

Fox Watch

Our lawn has grown really well since Colin spent his six hours patching up the mess after one of them thought it would be fun to make so many holes and pull up strips of the newly laid grass.  We were fortunate we had some rolls left and once all was back together we did take a couple of the rolls and lay them on top of my new and unused raised bed.  There it has taken really well so if we have any more problems we will at least have some decent bits to patch a little of it.  So far one fox has a been captured but we still see a few each night and cannot resist doing a bit of fox watching.  We do not mind them coming in as long as they do no damage. Our fences will be going up in the next week or two and they are too high for them to climb over so maybe all will be well.  Time will tell.  I suppose at least if they are busy round by us they are leaving the sheep alone etc.  The sheep are only a field or two away and I do worry about them when they are carrying their lambs.  Anyway the garden is fine but it does need dead heading and yet unless I use planks I cannot stand on the lawn yet so it will have to wait.  It is all knitting together nicely now and already growing down into the soil below to form a solid mass. This too will hopefully stop the foxes playing with the turf.  We shall see.

Going against my better judgement

For me I love school uniforms as the children cannot try to outdo one another with the latest trendy pieces of clothing or the designer gear some like to show off with. I have never believed small children should be dressed in designer gear - this is a personal thing and I do not intend to get at anyone who thinks differently but small children are not in clothes long enough to warrant the high price tag in my humble opinion.  

Every year we have enjoyed buying our grandchildren the school coats.  I actually look forward to getting the winter ones and seeing them set off to school all warm and cosy.  The parents appreciate this small gesture and I enjoy looking at all the different styles etc.  We like to get them something functional but nice too and not boring. This has never been an issue until this year and Izzy.  She is quite tall so we like her coat to be long enough to keep her warm, not one to just below the waist as too cold on the horrible cold mornings.  Well she has just turned nine so I bought her a decent coat for aged 9/10 thinking it would be fine.  No a bit of it.  The cut was so wrong she looked so frumpy in it and though she said it was fine it clearly was not and her mom and Colin both agreed with me too.  

Off I went to exchange it. Though it only cost £38 I still wanted it to look right so I looked for one aged 10/11 only to be told they did no do that size. They did all the rest but that size most manufacturers did not do as they felt 9/10 and 11/12 covered it all.  WRONG!!!!  I wanted a 10/11. I went to numerous shops and was shocked to be told the very same thing.  I rang Colin in desperation and told him how poorly I felt with the stress and was going to go against my principles and buy a designer coat aged 11/12 just cos the 9/10 clearly would not do and the store I bought the original one did not have that size in the same coat. Well the designer coat  I reluctantly bought her when we tried it on her fit great except for the sleeves which were way too long.  This one was a Jasper Conran coat and once again Izzy said it would do!!! Well it would not do at all so back to the drawing board.  I haver at last found another coat and this one is actually for a ten year old so maybe it will do but heck - it rankles buying a child a Ted Baker coat.  I so resent this but what option do  have, she is just at the in between stage they do not cater for.  So Saturday will see us all set off to Leeds and to the shop where I ordered the coat in. If this one does not fit then I have no clue what else to do.  I have tried supermarkets , M & S and all the other big stores plus Next etc.  I will give in and hand the task over to her mom if Saturday does not go down well.  If it does fit though I swear this will be the last designer coat I will ever buy for a child.  To me the price tag does not match the coat and she will not get any more use or wear out of it than the £38 coat I wanted her to have.  So wish me well for Saturday, make or break time. 

Such a small thing to take so long

AT LAST!!!!!  For a year now we have been promising to get some of those felt protectors for the bottom of our dining room chairs. Oh the grating we have had to endure every time we pulled out a chair over our porcelain tiles. It has been awful and set my teeth on edge. We kept on saying we really needed something on the legs of the chairs to stop it but time and time again we forgot  Today we had a few minutes to spare before leaving for the hospital so we used the time very wisely in my eyes and we bought some of those felt things that just stick to the bottom of the chair legs.  What a difference this cheap fix makes.  A year we endured the noise and a £3.49 fix has sorted it - its the little things!!!

Winter is really setting in

I can tell this as we have for the first time since we met each other bought a new duvet of a different tog rating.  We always liked just a 4 1/2 winter through to summer, it was always fine, we were always snug and warm. This year though for some unknown reason I have felt just not quite warm enough in bed.  Off I went and bought a size 7 tog rating, high enough for us and it does the job well.  I am now feeling warm enough without over heating and without all the weight of a heavy duvet on top of me. It has brought it home to me though how the weather is changing and the lovely warm balmy days we enjoyed so much this year have gone.  The leaves are all falling off the trees and the last of my apples have now been picked and waiting for us to devour them.  The last of the strawberries need picking and a few odd tomatoes and that is it for this year.  Time to batten down the hatches for the weather ahead. 

The good news is though that we will be spending some part of winter in Spain so we are really looking forward to that. Already we are planning barbecues and lazy nights listening to the waves lapping on the shore whilst we catch up with good friends.  Lucy and her hubby will once again move in here for maybe the last time as her baby is due in January. We will miss her so much. She is looking for a bigger place as her flat does not allow babies. I hope they find one close by.  

Well Colin is out - pint night - a once a month thing with my daughters fiancé, Colin and his son and another lovely guy who is friends with all of them.  They go to a local pub so no need for cars though in fairness they drink shandy mostly so they could get away with going further should they wish.   This is my night to be totally lazy and quiet as no interruptions of my favourite tv channels.  So I will leave you all now and tomorrow when I see Colin I will get him to take some pictures of the new piece of equipment now in my chest wall.!  

Now going to do a bit of fox watching before my tv programme comes on.  

I wish you all well and send you my best wishes and hope you all stay as well as you can.

Love as always

Carole  xxx

TURNING INTO LIVING COMPUTER ALL FOR PAH

Another research study

This study involves placing a insertable cardiac rhythm monitor under the skin near to my heart.  The device is small, less than 1 centimetre in size. The purpose of this study is to assess the nature and burden of abnormal heart rhythms in patients with PAH

As those of you suffering this awful disease knows we often get palpitations or odd things happening with our hearts.  Most of you will have been given the ECG monitor at your local doctor that is kept on for up to 72 hours.  This new study will be able to monitor any abnormal beat for the length of the study.  The study lasts for three years.  With this, along with my cardioMERMS the specialist will be able to learn so much more about PAH affects us.  I am hoping to have this procedure, which is nothing of a job it seems quite soon. All approvals are now in place so  am just wait for the call.  It does not involve a stay in the hospital other than a short rest after this is in place.  I will have a small device that I can place on my key ring which I place over my heart when I feel odd things going on.  As well as that a larger piece of equipment, though not huge will sit on my bedside cabinet and in the night will take off all the data gathered to be assessed.  I will not feel anything and actually it will likely collect data when I am asleep.

I feel blessed to help in studies this way as I - along with you all want to further the studies into this rare and little known disease. One day we will beat it, that day comes ever closer.

My watch - which also is logged to Sheffield has stopped showing its face to me, though they can still see how many steps, heart rate etc.  To this end a new one is being sent out from Apple and I will at last be able to see the time!

Trial

There is also a trial I am hoping to be able to get on but the truth is I know very little about it at this moment. My specialist is looking into it for me to see if I am eligible to be on it.  I believe I would   have been able to normally but the problem is as my pressures are measured daily they are quite dramatic in the ups and downs. It may well be that one day my pressures are too low, the next day too high! So though there is all the good that comes with having my pressures monitored daily the downside could be that I miss out on the trial that just may be the cure!

I have been waiting with bated breath for the trial from Papworth, the one which Nick Morell is playing a big part. Sadly I was told it is still way off. It might even be up to two years away yet so we will just have to be patient and all try to join any other trial we can get onto as one of them might be the eureka moment we are all praying for.  In the meantime we must all live our lives to the best of our ability and enjoy each day as it comes.

My normal ph appointment

This time I had the great pleasure of meeting for the first time another ph patient called Nigel Wilson.   What a lovely guy and it was such a pleasure to have a natter to him about his journey through these ph roads. Nigel also suffers from schleriderma ( feel sure I will have spelt this wrongly) In between both of us having our ecg's, shuttle test, bloods and seeing our doctor we never stopped talking!  It is always  pleasure to see a facebook friend in the flesh and this was no exception. Sadly Nigel was in the middle of his shuttle when I left so Nigel  hope all went well. 

My shuttle was hampered by this silly machine they now put round our necks to measure oxygen.  I never minded the one round our wrist and then fastened to our finger.  It was not intrusive and we just did the best we could. With this contraption they now use it was a nightmare.  Every move I made the silly thing bounced around from aide to side, banging into my arm or hands. It was not nice so after a while I said I just could not cope with it and was told to stop.  I could have done more on the shuttle but for this so was very disappointed indeed. I wish they could go back to the older method.  

It was a coincidence as the doctor I saw here was the same one I had seen the day before in a different clinic at Sheffield. This did mean that she already knew most of the things she was to ask me so it did mean our meeting was quite short. I think it had been  27 hours since I last saw her. This particular doctor is very heavily involved in the heart thing I am to have inserted so we had already dealt with all of this.  

Progress

At last our lawn is to be laid on Saturday.  I am so excited as it seems we have been in limbo with it for so long, though the reality is we wanted it right and it takes time to lay a really good lawn and to get all the prep done correctly first. The final count of crocus bulbs laid now is 360 of varying kinds so we should have a lovely display come the spring time, though quite how many are left depends on how hungry the squirrels are and they are foraging for food  now for winter.  I already saw a few had been dug up by the holes they left behind.  Lots of tulips have been planted in the beds now too, again all varieties so another thing to look forward to. I always plan ahead as I like to have something to reach for, some goal.

Our paths are all indian stone and we needed to protect if from dirty feet, frost etc.  This involved cleaning it all well and painting each slab twice with a sort of paint that seals the slabs.  I did do some of it on my own a week or two ago but the rain came down after two hours.  It must not be allowed to get wet within six hours so that was a wasted effort and a waste of money. This time Colin and I did it together working as a team.  As I could actually sit down on the slabs while doing this it was not as bad a task as I thought it would be.  The good thing is that now even the old slabs that once laid had been walked along by many builders in their muddy boots etc is now as clean and nice looking as the new ones laid recently. I have filled some big pots and laid them at the back of the house and they look really nice so all in all things are moving on very well.

I went to our local nursery as they are in the middle of being taken over.  So many plants were reduced and I was able to procure two clematis reduced from £20 each ( I never would have paid so much, they would have been overpriced down to £1 each. I also bought plants for some tubs and some winter cabbages.  

Colin is painting our bin store today. It has needed to be painted and shelves put in for so long but is low priority.  It will look nice when finished and I will be able to use it to clear some of the shelves in the garage of all the gardening stuff accumulated over the year.  Then the next task is to complete my raised bed, already in place but needs so much soil and compost added. Last but not least will be our barbecue area and so we move onwards to our goal of total completion so we can get more holidays in!

Away with friends

We have just booked a few days away in our motor homes with friends. One of them has never been away in a motor home before so is really looking forward to it. We have chosen a place we know well, where we can get good walking in. Also great for mobility scooters and wheelchairs.  A golf course close by offers really great food at a very reasonable price, all home made on the premises and a deli around the corner bakes delicious cakes (sin free of course - not ).  We are really looking forward to this as it comes right on the back of our holiday in Javea so the blow of returning back to normality will be lessened somewhat.  

Poo day

Not literally of course but you know how it goes. We have had an incredible few days with places to go and people to see.  All enjoyable but Saturday was a bit too much.  We began with a ride over to York to return a suitcase to a store and went straight onwards to Leeds to get a new case for an apple phone. Quickly back into the car and off to Huddersfield to collect a parcel.  Before we had time to catch a breath we went to visit with a friend over with his family from Australia.  We had a lovely time and a quick visit turned out to be a party with rather a lot of guests. This family is well known for their great skills in the kitchen so the food was just so delicious, chicken curry or goulash, all very tasty followed on by home made scone and cream and jam made by a new to me friend.   We had a thoroughly good time and it was so nice to catch up with the family again as their visits to the UK are not as frequent as we would all like.  All the family were over this time though and it was a very special time.  

Sunday turned out to be a day from hell.  My oxygen level was way too low so out came my portable oxygen and very pleased I was to have it too. I never left the bed all day as I knew my body needed to rest, it had just been too busy a time and sadly we just can do so much and we have used up all our spoons as we say with pah. So yes Sunday was my phat day (pulmonary hypertension arterial torment) and was wasted!  How I hate these days. OK maybe not wasted really as I knew my body needed to recover but it so annoys me that after a busy time we know we will hit the lows and need to recover. As it happened Monday was a bad day too but so much rest did me well.  Fortunately Tuesday was ok and I was able to resume my normal working function - as good or bad as it is. 

Izzy

She turns 9 on Saturday and she is very excited indeed.  Colin has asked, though in a tease, if he can join in her party and was given a very disparaging look. I do not do birthdays, gave them up quite a while ago! She is hoping for an LOL house from her parents but she will just have to wait and see.  

We are just in the middle of getting her more piano lessons as her teacher left from school.  This gentleman we are looking at has performed in many televised orchestras and is also often on the Proms so he should know what he is doing.  I have explained she is not one of the pupils who will do too much out of class except with her granddad which is a pity but even so any learning is good. She is a member of Stage Coach so we believe being able to play the piano will come into that quite well too. 

I always smile when I see her pick an apple from the tree in passing.  So my garden has come into its own for sure.  I now want to add a pear tree, again on a pigmy stock and hope it takes well.  

So there you have it,  a catch up on what we have been or going to be up to.  We also bumped into a friend we have not seen in a while and we have been invited to their new house to join in with a t party for cancer charity.  Colin will love this as her husband Martin and he can talk for ever about photos and photoshop or whatever all these things are on the computers these days.  I am really looking forward to this.  

We have friends due to arrive here in the next few weeks from Canada and we always enjoy them staying with us.  They have two grandsons who are just mad about dinosaurs so I have bought them two huge dinosaur eggs which hatch out somehow and also - I know this sounds daft - but some dinosaur plasters.  Clearly they are little boys who will always be getting scrapes etc.  They live in the wilds of Canada so I do not think they will get with ease all the things we can get here.  Anyway it is the thought that counts and if they are anything like Izzy it will not be long before they will be sporting one or two of these!

Whose baby is this

A walk - well a gentle stroll along the canal bank the other day had me wondering when I saw this in the water.  Whose cherished teddy is this. The poor thing came to a watery grave anyway.  I remember us losing a teddy Izzy had and we had to retrace our steps for what seemed like miles, though likely it was not to try to find it as we know how much she treasured it. We were fortunate but sadly the child that owned this will not be so lucky.

Anyway I am rambling as my friend would say so time to go and take my lunchtime meds.  I shall then pop into my local chemist to have my flu jab.  

Take care all and warm love to you all.

Carole xx

I CERTAINLY OWE THIS LADY MY STABILITY - DO YOU?

As most of you know we have been away again in our motor home.  One lovely consequence of moving around means that I just might be fortunate enough to be in the vicinity of another ph patient.  This time we were in Norwich.  Beautiful place this certainly is and we spent a night on the drive of our niece and her hubby.  This couple certainly have the green finger touch and I was so shocked as to how their garden had come on since the last time we saw it.  Veg were growing in abundance as was fruit, the chickens were laying well and I can testify the fennel was certainly showing who was boss as it kept catching around me as I went from motor home and into their house.

Our welcome was a very warm one and made all the better as they had no idea we were going to park on their drive until the evening before. Whilst I was there I wrote a post asking if anyone lived close by. Mandy Leonard wrote that she did, in fact only around 7 miles from where we were. Without ado off we went  to park on her drive and have my first ever look at this lady that I owe so much to.

Now yes I know about my A Team, I mention them so much but I knew just what a huge debt I owed to Mandy.  You see Mandy was diagnosed with PAH around 2005 after having symptoms for years before that. Now those of you with PAH know that the new meds are slow to come onto our space, slow to be allowed etc although as we are are a rare breed we do get special allowance from the government to say that ours can be given to us without all the delay needed for most meds.  That is because without our meds we absolutely will die.  

So think on this -  here we have a lady who had never heard of PAH, scared for sure and not really much out there other than channel blockers, bosenten and iloprost etc.  The specialists got their heads together and after talking to Glaxo Klyne who was hoping to trial a new drug they believed would help they asked Mandy if she would be willing to trial it.  There were just 6 people trialling this med.  Generally when I trial there are around 20 so only a small number for ambrisenten indeed.  Well long story short really as those of you on it know the success of this particular drug and that also unlike Bosenten which has a greater danger of the two drugs to cause liver and kidney damage this med appears to be a good one for PAH.  I myself switched to it after coming off the hickman line and have been so grateful ever since.  

After the trial the drug was expensive and the government just could not, or were not willing to pay for such an expensive medicine right there and then. It all needed to go before boards and talked about at length. The drug company though saw just how well Mandy for sure was doing on it, I cannot say about the others as I have no knowledge. They allowed Mandy to continue to take it without charging the NHS who would not then have allowed it and always asked how she was doing whenever her packet of this life saving drug was ordered. In time of course the drug was approved and the money found to allow the drug to be available for the many of us.  Thank goodness for that.  

Mandy looked great, here she is 15 years after diagnosis keeping a beautiful home for herself and her hubby and son. By the way her son is really gorgeous if there are any young single girls around that area!!!!!!  He just might kill me for that. Anyway the crux of the matter is without this drug I just might not have remained as stable as I am. I might have liver damage or kidney damage etc.  So yes to me Mandy is top of my list for helping me to remain alive after my initial diagnosis.  It is thanks to people like her that I decided to trial as I knew of the benefit I was getting from drugs trialled by those before me.  So yes  - Mandy a HUGE thank you to you and I hope you continue to do as well as you are doing. I will not give up trying to persuade her to attend our conference.  A lot of the newbies can see how well she looks 15 years after her initial diagnosis.  It will certainly be a huge boost to their minds.  

Home again

My family next door are home again after their holiday.  It sort of felt lonely for the few days we were home and they were not.  Nobody running around the garden, no rabbit hopping merrily around in the sunshine and no faces at the window.  To welcome them back I took them flowers from our garden for their family room and a few sweet peas for Izzy as she loves the smell of them in her bedroom.  They asked me to get them bread and bacon as they were craving a bacon butty!  Turkey of course does not serve pig and though they rarely have it here I think it is what you cannot have you miss. So up got Chris early this morning and made bacon sandwiches for breakfast for himself and Danielle.  Happy faces for sure.  

We appear to have got rid of Mr Fox as he has not been seen for over two weeks now!  I hope it continues.  I am giving the box of bone and fish meal we bought for the garden to a friend as studies show that foxes are attracted to it, anything to stop it coming.  So there you have it, it appears that male urine, lots of it, in particular the first morning wee and my smelly dousing of all the plants with boiled up garlic and scotch bonnet chilli seems to have worked.  I am very relieved.  I used to see it in the driveway at 4.10 am each morning. Strange how it always came at the same time and I always seemed to be up making a call of nature. Anyway I saw it three times in the same place at the same time.  It must then have run around and came back to attack our plants from a different angle.  Well no longer does our drive smell of fox pee and poo.  

Today I woke up feeling good, no PHAT day for me {pulmonary hypertension arterial torment} or at least very little.  Would that all days were the same. So as we had just had more indian paving stones put down at the back of the house I decided to jet wash all the ones that were already down.  They were certainly grubby compared to the new ones.  I ended up with sand in my hair, face and I will not tell you how bad my clothes were as they were unbelievably bad.  Chris said, and he was correct, I should have worn my outdoor wet weather gear but the sun was blistering hot and I think I would have died!   The problem is that doing one job sets up another.  The sun terrace threw all its sand onto the bi-fold windows and so another job to do, plus all the glass surrounding it needed to be sorted out.  Fortunately I did manage to complete the job and did not have to hand it over to Colin who himself was working very hard cutting all the hedges.  So I am rather proud of my accomplishment today and thank you pressures for staying good whilst this was going on.

Pressures

Talking about pressures as you know I have the cardioMEMS machine.  I thought I was doing pretty well, I really did so it came as a shock whilst we were on holiday to be rung by a member of the team and be asked to make an appointment to see Alex.  It appears my pressures have been steadily rising for some time.  Strange how today must have been good for me to do the job that I did.  Yes I do get  tired a little earlier, I do puff a little more than I did and yes that annoying cough is showing its ugly head a little more but generally I have no complaints.  Anyway the top and bottom of it is that I have an appointment at the Northern General in Sheffield on the 12th September.  

At the same time I attend this appointment  I believe we are talking about two trials and hopefully one that just might be ok for me to join.  I know many of you  - like myself - are still waiting for Nick Morells trial from Papworth but I have heard nothing about it being that one though I will of course post if it is.  Well of course I will post no matter what trial so watch this space.  

Looking ahead

Loads of lovely things to look forward to which I believe gives me a huge boost.  Our niece is coming to stay, though just for a couple of days. I have a lovely ph friend called Paula Joanne Smitham and her fab hubby coming to stay for a few days in September too and just maybe, in the offing a friend who lives in America might be able to come over and stay with us for a while.  We also have a holiday booked a little later back in Javea and have already pencilled in lots of diary dates to catch up with our many friends who live in this beautiful town.  So I will certainly do my best to keep on top of things, to stay healthy and well.

Ah there goes the bell.  I am hoping it is a small package containing the sheets that are now used on top of the barbecue grill. Chris uses them next door.  The food cooks well with the lovely lines on that come through from the grill and no need for a messy clean up.  You just wash the sheet or sheets out with hot water and put it away until the next time.  We were amazed when we saw him using them and for sure the worst part of any barbecue is the clean up.  Now it will be made so easy we might use ours much more than we do.  

Izzy

Well now she is home tomorrow I will have her pick her first apple off our tree, pick her first strawberry and cut green beans for tea. I want her to learn to enjoy the garden and I believe if there are nice things growing it just might encourage her more.  Colin is still to make me my raised bed to grow more but I have done ok.  When the bed is in I will ask her to help me to choose which fruits or veg we plant.  She loves her veg so we should get a good variety.

Right all for now, I made a curry for tea yesterday, yes even in the blistering heat and now we are taking it down to our friends house and will all enjoy it whilst sitting in his beautiful garden. As we are still without a lawn we cannot do that here yet.  I am so hungry as I have put myself on a diet since hearing my pressures have risen, maybe that might be the reason, who knows. Anyway we have also just been out to buy a water butt which seems to fascinate Izzy, I do not quite know why and that needs to be fitted today. We also purchased lots of crocus bulbs to plant as it is a perfect time once the top soil has been laid and she can do all the bending down to plant! Slave labour for sure.  Just maybe I might buy her an LOL if she does well.  

Take care, enjoy the sunshine and I will speak again after my appointment at Sheffield and let you know about new trials and my pressures etc.  

Warm love to all.

Carole xxx

STILL HERE - STILL PHIGHTING THE PH

Yes I have had another anniversary since being diagnosed, 9 years on!  To think I am still here, still phighting is rather incredible seeing as the specialist who diagnosed me could not promise six weeks!  Thanks to my amazing A Team here I am, nine beautiful years later.  Sure it has sometimes been hard, a tough road to follow or a high hill to climb but with their help I have done it and continue to do it.  I sometimes wonder quite why some of us make it so far along and others do not.  My heart grieves with every one lost to this incredibly horrible illness, I hate to see the pics of the new babies born with it, seems incredibly unfair. I am always so pleased and thankful we have such amazing specialists worldwide who go all out to give us a life. No we know the cure is not here yet but I always have the hope, if not for me then for those that will come afterwards - one day!!!!!  So 9 years on and I am so blessed to still be here, still making memories.  

Busy busy busy

Not all bad kind of busy though for sure some of it. The dratted fox still comes, though it did stay away for a while when I laid down a cocktail of hot peppers and garlic.  Sadly the smell wears off and back the thing comes to burrow under my well tended plants.  I have had Colin peeing into containers and putting it around the plants as it does say it can put off a fox as they are territorial, not this one though.  It appears we could put up a huge fence to keep it out and block all holes etc.  Hate the thought of this though as it will also spoil the views and we have incredible ones from everywhere in the house.  I could not bear to look out and see fences all around me.  Well we shall see what we do next when we have had time to look online again and make decisions.  I have read that Lion Poo is a great deterrent but sadly not too many lions around our parts!  

We have just been on two holidays which has taken up much of our summer so far.   Our first one was to Cambridge where we stayed on a site in Houghton, owned now by the National Trust.  What a fab place this turned out to be with a beautiful river flowing through the grounds.  There is still the old flour mill and it is put to use on certain days of the week. It was very interesting to look around it.  Thickets abound this place and lovely shaded walks are the order of the day.  A really nice one takes you into St Ives, no not the one in Cornwall but a beautiful small town and other small villages are very definitely worth seeing. Houghton itself has  much to offer, with two great pubs and beautiful thatched cottages that really do deserve to be on the front of chocolate boxes.  We thoroughly enjoyed our stay here and intend to go again when we have the time.  I love Cambridge as my family from the year dot were all from here and there is much for me still to find out about my family tree.  

Yesterday we returned from a cruise around the Med, we took Izzy with us as she loves cruising.  On our way down to catch the ship we called in at Poole for a day to see family, it was the first time Izzy had met her two cousins and they had a great time playing in the garden while we all caught up on events.  The weather was very good to us, in fact too hot even out on our balcony so often you would find me in our air conditioned room after we arrived back from our trips to the places we stayed at.

Our first Port of call was Gibraltar and we managed to get a picture of a family of Apes up on the rock.

Izzy was reluctant to get off the ship and would have preferred to stay on it at all times but we did manage to persuade her by offering her many games of golf once we got back on board.  She did get very proficient at this and often beat the pair of us hands down.  She refused to go to the children's club other than for the 20 minutes trial we said she must do. She hated it. So it was all granddad until typically the last few days where she made a lovely friend of a girl called Olivia.  This was thanks to Olivia having a ton of L.O.Ls so they spent time playing with them and touring the ship, playing games etc.  

My amazing cardioMEMS machine travelled well and each day I plugged it in and did my bit so that my specialist Alex  and or team could read my pressures. Some days the results would send easily, others not but they did all go off as soon as we reached a port with a strong enough signal.  As I never heard anything from my medical team I of course assumed all was well and so I hope this pattern continues.  I do wonder if one of the reason I remain fairly stable is because of the denervation I had. Maybe microwaving part of our small bronchi is the answer for stability. Only time will tell but Alex did say that there were a couple of trials I might be interested in so I am looking forward to getting his call. As you all must know by now I am always open to trials or studies.  One day the breakthrough will come.  

I did do my best to not overeat and we were both pleasantly surprised to see our weight has remained the same as when we boarded the ship.  We both exercised daily with Colin heading off to the gym first thing before breakfast, well he does it at home so it must continue whilst on holiday.  I know that for me I need to walk.  If I do not I feel terrible with this ph so I would go up on the top deck and walk the laps - 9 laps equalled one mile.  I would always have the goal of 40 laps.  Sometimes I walked with people but mostly on my own as I prefer it that way.  

Izzy ended up on TV!  Well only the ships television as on day two of our holiday her new swimming top that protects fro UV rays went missing. Colin had taken it off her and put it to drip dry on the shelf in front of our seat.  We bundled up our things to return to get ready for our evening meal.  As soon as we got in Colin realised he had left the top and went back for it.  It had gone.  Though we tried daily to see if it had been  handed in it sadly was not.  Chlo the entertainment host did a small piece with her in front of the cameras.   

Izzy was dressed in all her Spanish gear we had just bought her and looked so cute.  Chlo had her talking about her holiday,  and so it went out on the tv.   This is a channel where all the news of what is happening the following day are shown.  Her top was never handed in.  It did seem strange to me that it was taken and left a bad taste in our mouths for the rest of the holiday.  

We watched a show each night with the Ice Skating one being the most spectacular.  I must say the shows on board this particular ship were not the best, I have seen some that would eclipse broadway on other ships but non the less they were entertaining and only lasted 50 minutes, long enough to sit still in one place.  

When we go away I do stay off social media mostly as it is nice not to bother with the computer.  I did wonder though how people were faring and I do hope everyone is doing ok.  

Once again we returned home to a spic and span home but not sadly outside due not only to the fox but also the weather!!!  My goodness our garden was hit badly with it and despite a friend coming up to check it over it has taken all morning to get things back in order and a trip to the tip with all the rubbish from the dead heading I had to do. Colin dug up two potato plants that I had simply planted and did not bother to hill as I just wanted to see if they grew.  My word just the two measly plants, not tended or cared for, not hilled etc came up trumps.  I do dread though just how many we have in the potato sack that I lovingly tended.  We do not eat many spuds so I do believe I will be giving quite a lot away.  I am just leaving these out for a day to begin to settle and then they will go into a dark place until we require them.   

It was lovely when we were at sea not to bother with the papers and not to see all the terrible things happening in the world.. Back to reality to read that a 17 year old boy threw a 6 year old boy, (unknown to him) over the rails at the Tate Gallery where he landed 5 floors below on the roof of a building. Had he fallen the whole ten floors he would have been dead for sure. This poor boy was being held in his mothers arms when this young man came and pulled him away and hurled him over the rails. What on earth is happening in the world today.  What with that and shooting going on and knife crime it is sad that we have to live like this. We had two weeks shutting out all of this and it was bliss - now we are back to reality.

Izzy is spending the week at Stage School to give us a much needed break. As she has never attended  one before it should be interesting. We are invited to a show at the end of the week so will see how that goes. It does surprise me when I watch her now as gone is the timid little girl we once had and now she is a confidant girl and happy to put forward her own ideas and put her own stamp on things.  

(An add on to that paragraph as I have since been round to see her and Danielle told me the head of the school took her on one side and said very quietly that she does not normally offer places to children so quickly but she was so impressed with Izzy she has said she can join if she chooses, not just holiday time.  Izzy is a bit wary as she said they are going on holiday, - the school  - next year to Disney and she does not want to go.  Of course she loved Disney when she went with her mom but away from her mom is different.  I think she might change her mind in due course. 

Anyway we are back to reality now and instead of the sound of the waves lapping against the ship we have the cows lowing in the field opposite. Sometimes it can be sheep and sometimes cows. I did miss this sound when we were away.  Now back to hospital visits, blood tests almost weekly etc but also the fun singing group I have joined and the Pilates class that so far is helping with the pain in my neck really well.  I do believe that both these groups have benefitted me, expanding the lungs with the singing and the exercises in the Pilates to stretch the muscles and bones.  

I am a great believer in exercise and these two classes suit me so well, plus all the gardening which has now produced our first crop of potatoes.

Well, all for now, much to catch up on.  I shall try to read what is happening on the ph sites now I am back.  

Much love to all, stay well and stay strong.

Carole xxx

LIFE IS JUST A BOWL OF CHERRIES - well not exactly

Getting on with it

Many people say about we ph ers how brave we are, how we do not make a fuss and just get on with it.  The truth is what option do we have.  To sit and moan at family and friends wold soon drive them all away and would also impact on our own lives.  As I have said before to sit and moan does not change your diagnosis, it does not make any of this go away so yes - whenever I can I do just "get on with it."  I do my best to live a full live, although of course limited because of my condition.

Now if I listen to the latest fact which say we can, if the meds work for us live to eight years now  then I, like many others are defying this.  I am coming up to my nine years diagnosis which was in fact on my birthday - 21st July - nice one huh.  So  I continue to defy the odds, little old me who never believed it was possible.  Yes here I am, sill "getting on with it" to the best of my ability and so hopefully will continue.

Life is not without issues.  I recently suffered bradycardia which is a very low heart beat.  O.K for athletes but not for me.  This is quite frightening as if I read it up on google, (really should not but hey ho we all do) it does say that our hearts can suddenly stop beating, likely when we are asleep as our hearts generally beat even lower then.  So for a few days I must confess to being rather nervous.  To try to combat this I did energetic things to bring my heart beat back up rightly or wrongly.  Though my beats did rise as expected they quickly fell back to being very low.  Quite why this was happening I had, nor still have any idea but the fear that I would just go to sleep and not wake again without all my affairs being sorted once again (yes been done before but things change) did worry me so I am making it my goal now to deal with any issues that need to be resolved  it is too late for it once I am gone -- and putting new letters in my piles to be read after my death.  This is not a morbid thing but just another one that needs dealing with now.  My oxygen level has been falling rather low recently too,  again something that needs to be addressed and I will deal with that shortly.

So here I am in a zone that not everyone with ipah will ever have reached but I am comforted in knowing that some of my ipah friends have reached that goal and gone way beyond it.  I pray that I too am in that position and have quite some time to go on this earth.  I never really listen to our life expectations as I have beaten them time after time so once again I will now push this one away and move on to the next - just as all my brave pah friends do too and I will just "get on with it" once more.

So yes life is just a bowl of cherries, some nice ripe and juicy days and some that - well to be perfectly honest are like a cherry just on the turn, a bit yucky but still looks great on the outside!  With the support of my family and friends and of course my A Team once again I will soldier on.  I have much to live for and enjoy, ph will not stop me enjoying life.

Rewarding but oh such hard work

As our garden continues to develop we see many neighbours stop at our wall for a chat about it.  It appears to be generating a lot of interest as they all watch the progress. Yes even in this awful weather we have been having Colin continues to go out in his muddy wellies  and shift around heavy sleepers, made even heavier with them being continuously wet and dig trenches for them to go in.  Once sleepers are in he has been riddling our tons of soil, all spoil from making the garden  all in a heap in a small part of our garden.  This is to get decent soil for the beds and raised beds, of which we now appear to have many!  So it is encouraging to note that our neighbours  are all very impressed with how this once - what we thought small garden -  now not so small is coming on.  Once all the shrubs had been removed, around 30 feet we think it has really opened up our space.  

Though we did posses a "real riddler" it appears to have gone walk about right now. However this matter has been dealt with in a most satisfactory way. Our good friend Michael came up with an ingenious way to riddle. He called at Lidl and asked if he could have a spring onion box. Now these come with los of holes in them to allow the produce to breath. Lidl was only too happy to help and gave it to him so he riddled a few barrow loads to begin the process. Since then I go to Lidl often to get more of these as they do not last too long, maybe a few days but handy they certainly are.  We now have about five of them and all put to good use.

Yesterday I just had an urge to see if I could do it. I had been stopped by both Colin and Michael in the past as they thought it would take it out of me. Feeling positive I went out and between Colin and myself we devised a working plan.  I cannot lift the shovel to fill these boxes but clearly Colin can. So there we were me lifting the boxes Colin filled and then sat on the edge of the wheelbarrow. I would riddle one and then leave it for Colin to empty the small stones out and refill.  As he was doing this I have moved on to the next etc.  We were both delighted as to how quickly working like this we filled barrow loads with good quality top soil.  I was so proud to see the raised planters being slowly filled and with compost added ready to receive plants. I managed to help him to fill about seven barrow loads before my beating heart and my shaky legs said enough so sadly I left him  to continue and I came inside to lie down. Still once again  I achieved something I was told would be too much for me so never say never should now be my new motto. Today I shall go out and fill some of these beds with the plants we have waiting. We have deliberately decided to keep one bed narrower than the rest and we shall put up trellises and grow beautiful climbing flowers, evergreen that throw out gorgeous flowers at certain times of the year so if any suggestions - we already have sweet peas - please tell me.  Not ivy as we have some outside on the rockery and that is ample for us.  Remember we live in the UK with quite varying temperatures too so they need to be quite hardy.  Suggestions please.  

I am now a member of the happy to compost group.  Daily I manage to find things to compost after I have given the best bits to the rabbit.  We are not waster of things but inevitably in all households there is waste.  I now crumple up old toilet roll things, you know what the toilet roll is on when we buy it, name eluded me totally! I compost our used white kitchen rolls along with banana skins, pineapple rinds , melon skins etc.  t is amazing how much waste we have but clearly not fit for human consumption so I am pleased to be able to put it to some use this way.  Today  shall go and purchase a water butt.  Sadly no place to put it yet but there will be shortly.

The space in front of our utility windows is to be used to house a small summer house and we shall have it flagged so that we can put a fire pit on it and cook over it on clement days. The bar b q will sit off to the side of it and then will be my bit of garden to grow a few veggies.  Though this is quite a small space I feel sure it will look amazing when completed.  Already there is a huge pile of hard core in a heap waiting to be put down and once we have some trellis and a bit more fencing erected this project can begin.  I still am waiting for my washing post to be erected so still using my daughters.   I fear my need for my own will be the very last job to be done.  We are making use of the very many blocks that were taken up from our house before we began to build.  Colin has decided to make a path out of them at the very bottom of our garden and Danielle's  - bet it is completed before I get my my washing post!  

We managed to get rid of the huge pile of wood chip that were left on the path by our friendly landscape gardener.  Much went onto our own beds and some is in bags waiting to be used later on.  We then put more down on our family next door steps ass though they had some we used some of ours to make theirs thicker, it looks much better.  We were then talking to a good friend of ours and we just mentioned we had some here.  He was after some so he came with his lovely wife and a load of bags.  He took all that we had left so it was a very successful mission getting so much and using it all up. All were well pleased.  

Looking ahead

We have our cruise coming up in a few weeks and once again our lovely cleaner Lucy will take over our house with her husband.  On the way down to join our ship we are staying overnight in Poole so that we can visit with some of our family.  We do miss them and always look forward to pleasant times spent together,  My sister in laws health is not too good right now as she has suffered yet another blow to it but like me she 'just gets on with it" so I am so looking forward to seeing her and giving her the biggest hug I can.  We are hoping that later they will be able to come up here and spend a couple of weeks staying with us.  Our niece has now given dates she can come up from Norfolk to visit with us so again how lovely it will be as we have not seen each other for years!  These visits along with one to come from a fellow ph friend and her hubby later in the year are all dates on our calendar to look forward to.  Colin is leading a walk up here in Yorkshire for the Costa Blanca Mountain Walkers that are here for the summer.  One couple booked down for that will stay overnight with us so lots to catch up on there too. Again all positive things to make our future one to look ahead to with pleasure.

Oh bummer!!!!!  After this I said  was going to plant out but the weather has turned and it is pouring down!!  unlike Colin  I hate to wade through mud, our lawn is still not laid so to venture out means walking on the bare earth or planks of wood laid down to make it easier.  So I will just have to hope it does not rain too much as I really am longing to see these man made planters that deck the garden have some beauty in them instead of just bare (though beautifully riddled and composted) earth.

Just things!

Tomorrow I have an appointment to hopefully get more insoles to make life easier.  I walk over to the right on both  feet and though we did have some ridiculously expensive, though well worth it insoles made they only fit my walking boots.  These have made a huge impact on how I walk when I am wearing them but clearly not for everyday shoes.  After lengthy appointments with specialist that deals with this and physio to show me exercises and my notes being lost I can now, after eighteen months at last see the people who deal with making and fitting these.  It will make my life so much easier and hopefully take away some of the pain in my right hip and lower spine.  This will make a huge difference to me so this is one appointment I am rather excited about.

One appointment I am dreading is coming up next Friday.  That is the hairdresser.  Oh how I hate these.  My  hairdresser is truly lovely and so she is not the problem.  I just hate having my hair messed with.  

I have left it way too long and right at this moment in time I do not even bother to try to straighten it so I look like a shaggy dog.  My hair is also in my eyes.  I loath that my once lovely straight hair turned curly.  Izzy loves it left to curl on its own but oh not me!!!  I will get Colin to take a picture of it and you will see why!  So next Friday I will beat my demons and go and be sorted out, colour done and hair cut!  That will be the end of it for around another six months if I can get away with it - oh such torture!  

I do not generally do evening outings, always my best in the morning.  We did make an exception last week though and went to our favourite Indian Restaurant with our friend Michael to discuss our holiday coming up in Javea.  It was so nice to relax and think about this holiday ahead of us later in the year.  We all reminisced about when we lived there, the things we did, the places we saw and the lovely places we ate in.  Michael already has a list of where he wants to go and where he wants to eat!  For me though just being back in the place we loved, the place we made our home will be delightful and of course seeing all our friends.  Some have already put our dates in their calendars so I know we will have a great time.  Christine my lovely family from way back to the 15th century with whom I did a lot of my family tree research will be around then, no holiday booked so I know we will both be delighted to catch up, plus she loves Colin and he her so happy times ahead.  

Jayne Venables and her lovely hubby are on the high seas right now enjoying a cruise.  She is on the ship we will be going on in a few weeks and just about the same venues so it sending us daily updates.  i must say it all looks amazing and is whetting my appetite even more to be able to go on ours.  Izzy gets ever more excited and is planning wha to take with her, one thing is the  cardigan that she took from her mom as she says is smells of her moms perfume.  She will facetime her mom whenever we are in port and have the chance so all will be good.   

We are also hoping to get two or three weeks holiday away in the motor home.  It really is a home from home and the comfort it gives us is just amazing. I love to go away in it and know that if necessary I need not even step out of the door, all is to hand fo me and I feel safe and protected in it. We hope to go down to Wales or up to Scotland. We need to sort it out between all our other dates in our diaries but one holiday we really want to manage to do before the end of the year sets in.  

Royal Ascot

This date is in our calendar yearly.  No we do not go, it would not interest us at all but my daughter and her lovely partner Chris do go and join all the fun with Chris's dad.  They generally have a box so do things very upmarket, something I would hate!  My daughter is so different to me in that respect, she likes her hair done, nails, make up etc. where she got that from is beyond me, likely my mom who was always beautiful dressed and turned out. This means that we can have Izzy to stay with us for a few days.  We all enjoy this time and I love that at night there is no  rush to get her home we can take out time with everything we do.  She played Hallelujah for me the other night on the piano and I must say it was rather good so looking forward to hearing it again. (Tess she is now using two hands so is getting on pretty well.) We will have her for three days and though we will be exhausted at the end of it once again such memories will be made.  

Why?

I always admit to being no computer buff, why even this blog, though all typed by me will be posted by Colin as I have never mastered the art of doing it.  So I have a question to ask you buffs.  Why do people follow your page but not friend you?  I had notification the other day that a friend from long ago, sadly we lost touch has now followed me on facebook.  Why did she not just friend me, send me a message etc.  is it that she just wants to see what I am up to with me being able to see what she is up to.  is it a case of hoping to maybe see bad things about me (we did have a falling out years ago but  thought that was resolved)  So if she is reading this (and I assume she will as she followed me) please friend me if you want to do so.  it would be lovely to be in touch.  I do know some follow for the wrong reasons.  I have had some who messaged me saying they want me to be their friend though they live in places I have never even heard of. (these are all men ) They get upset when I do not respond and keep coming back so I just block them.   I am  thinking therefore to change the status on my page to friends instead of public.  So if you are able please friend me if you have not already done so.  The reason I have left it public for so long is because of somebody who means so much to me who does not friend me but I know reads my blogs.  Not sure how we can get round this but he is savvy enough I hope to sort something out.  (T - you have not seen the new house yet, please call around as we would both be delighted to see you again). 

The end is in sight

At last our new hall is almost ready so  will be able to attend my own church instead of one a mile or two away.  This also means the end of baking weekly for all the unpaid volunteers who have restored it and the end to all the washing I have been doing weekly.  Colin says on Mondays our house looks like a chinese laundry with around 15 shirts, bedding and towels from a couple whose washing  I do.  Small price to pay for all they are doing for us all but yes I am still relieved the end is in sight.  Today I will hand over two dozen savoury pies I have baked for the last time for the team to enjoy on Monday morning.   Tomorrow I will receive my last load of washing so I am hoping this weather gives us a break and gives me dry but windy weather so it can be dried outside.  Then hopefully all will be back to normal and we can enjoy our newly refurbished hall. 

Right so apart from needing Colin, who is on a bike ride now there is nothing more to say for this blog but I do need him to take a pic of my hair which is unbelievable right now.  

I will love and leave you all now.  Thank you once again for taking the time to read my ramblings and to like the page.  I love comments so if you can be bothered then please leave one.  

Keep smiling!!!!!

Carole xxxxx

I did it.  The weather was kind enough for me to go out and plant.  Among other things I have planted antirhinums, phlox, campanula, lupins `and a whole variety of others  Sill one bed to go so will go out and buy more.  Then the very last will be the climbing wall so a time to go before then.  Now I hope for sunshine for them and the hope that I did no kill them all!.  Now time for a bath!