REMOTE ANALYSING - the future?

Raising awareness for remote analysing

On Monday I was fortunate to be part of a zoom meeting between London heart specialists among others and our own lovely Doctor Alex Rothman and lovely Jen, both part of my great team from Sheffield.  Alex organised this meeting and my part, though small was an important one.  As I have two chips and am also monitored by Sheffield via my fitbit it means that daily I can be monitored to see how my pressures are, how my heart is and how my exercise capability is.  It also shows them my oxygen saturation levels so if they think at any time I need oxygen ( please god I pray not ) then they know all my measures.  To this end I am spared for now right heart caths etc which cuts down on hospitals having to use facilities that could be better used for other things.  So when I was asked to give my opinion via my computer linked into their meeting I was only too pleased.  I related to them how I was very poorly with my pressures rising so high and my heart being under duress and I put it all down to the stress of my back.  My team however looking at all my figures remotely could see that I was in trouble. They quickly got on with analysing the problem, got in touch with my  local doctors and ordered blood tests and changed my medicines. All this without my leaving my bed!!  So thanks to the chips and my monitors I was spared what could have been a lengthy hospital stay and maybe an even worse degeneration of my heart.  I told them I just love being monitored this way, that it held no issues for me and that I considered myself fortunate to have been offered to go on these studies.  I hope that in the long term more and more of us can be monitored this way, it makes sense.  Anyway it is now in the hands of those that know best so we shall see.  

Coronavirus

On top of pah and all its issues we now have the coronavirus the contend with.  Bad enough for the healthy that may catch it but much worse for those suffering with chronic illnesses.  I am not panicking though as I think there is nothing more than we already do to try to prevent it so if I succumb to it then so be it.  Short of staying put in the house until it all blows over what can one do.

We already have a regime where anyone coming into the house uses a hand gel to help combat germs.   We began this years ago when I was on the hickman line and we learnt the importance of no getting it infected. I go round daily wiping all surfaces such as handles, switches, television remote etc and iPads.  I have always loved the smell of bleach and disinfectant so nothing changes on that score, we still use lots  of it.  When leaving the house I wash my hands with a soap that offers protection for three hours. On using trolleys etc I wipe the handle down first before I use it.  I carry a few dettol wipes in a ziplock bag for this.  What else can we do.  Clearly lots of hand washing but I feel sure that is part of our daily regime anyway.  I send Izzy to school with a small hand sanitizer for her pocket in the hope that it just might help her to ward off some of the bugs.  I refuse to panic buy and fill my shelves with food I really do not want to store.  I have a decent store cupboard anyway and think it will just have to do.  However though I am saying all of this I worry such a lot about my family.  I would hate for my son or daughter and partner and their children to come down with this.  The closest to us so far with this bug is in Leeds where my son just happens to live.  I just pray that he stays safe from it.

As there seems to be a shortage of lots of antibacterial things one suggestion is ( and a good one I believe ) was to use vodka or gin.  A doctor talking on the news said to just put a little on your hands and rub it in.  In actual fact it is cheaper than the antibacterial tiny pots mil by mil so maybe the way to get rid of any bottles of unwanted spirits!  

Izzy

She is growing up much too fast for my liking.  I was watching her washing her hands the other day and was shocked at how long her legs are now.  It seems only days ago that we had our curly haired chubby baby who always had a smile on her face. I miss that stage but am thankful to be here for every part of her life I have seen her through as my prognosis was so bad that it was feared I may not even get to meet her.  

All of these milestones  would have missed.  Yes I would not have known it but she would never have got to know how much love I have for her and how proud of her I am.  

She came bursting in yesterday to ask for a potato! when I asked why I was told she had to make something with it.  Potato duly chosen by her it did not seem many minutes later when this picture was sent through.  It is for school and I think it looks great.  I believe it is supposed to be somebody from Harry Potter but never having watched one I could not tell you who it is!  

She has a boyfriend called Ned, in my day boyfriends were unheard off until at least the secondary or grammar school.  How times have changed.  The family are going skiing again next year so to keep the kids up to speed they attend the dry slope close to us and both are enjoying it.  Izzy just needs to get a little more confident getting off the ski lift but that will come.  

A pah visit

We have had a lovely few days with a friend of mine called Paula Joanne Smitham and her hubby Neil.  I said they were coming and awaited their arrival eagerly. It was smashing. Despite the weather being about as bad as it could get it did not stop us walking on the canal and then catching a bus into the town centre where Paula had a look around our Piece Hall.  A little shopping took place.  Though we wanted to go to Shibden Hall, home of the late Anne Lister the hall was closed until mid March so we have that to look forward to on their next visit.  We must time it right though as it will be closed due to more filming taking place mid year. Right now on our televisions they are showing Last Tango in Halifax, I really wanted to show Paula all the places where it has been filmed as we live right in the heart of this beautiful countryside.  This did not happen but next tine we will visit Shibden Mill Inn for lunch and have a drink at the White Lion in Hebden Bridge, both of these eating houses are lovely and are shown such a lot in the series.  Paula also wants to visit the site where Emmerdale is filmed so we need a fair amount of time to achieve all of these goals.

This bit as no bearing on anything that happened with Paula but I need to "hide" it somewhere where Colin has read already.  He will have no interest in sewing so not bother to read it again, Question  Can one of you guys out there please explain to me why "man jobs" are always way more important than a woman's?  I ask as this morning as I was scurrying around doing my cardiomems, making the bed, putting away the washing and getting myself ready I expected a little help as we had a deadline.  None was forthcoming as Colin just did his own thing.  When I asked why no help the answer was that he had more important things to think about as he had man jobs to deal with later!  

We went into a fabric shop as Paula is an accomplished sewer and always loves to look around different sewing shops. On entering we realised that sewing classes were held here most days.  I sat with some lovely ladies who were quilting and they were a smashing bunch of ladies.  nyway the upshot is I have put my name down to join a group when a spot becomes vacant. Never before I met Paula would I have thought I would do that.  So with this in mind a germ must have been planted in her head.  Yesterday I received a parcel sent from Paula. On opening it was a thank you card for taking good care of them and then this oh so beautiful hand stitched with love by Paula sewing kit which held these lovely scissors, needles and pins.  On top of that I told her I like socks a little different to just one colour and she sent me these lovely socks too!  I love the sewing bag so much I cannot wait to use it!  Thank you Paula, you are so kind.  

Catherine Makin

It is so wonderful to see how well Catherine is doing since her lung transplant.  Now home at last with her family she will rest and regain her strength.  We are hoping to go and visit her in the next week or two but it depends how I go on as I will begin the dreaded selexipag next week.  We will have to try to see if we can fit in a visit before then and between our visits to orthopaedic specialist for my back and Colin's hip doctor  - oh the joy of growing old!  (we have just returned from Colin's appointment to be told all is good) so we are thrilled about that. 

Catherine is such a lovely girl and the shock of her having her transplant more or less as soon as she was placed on the list must have set her and her family reeling.  For quite a while she agonised as to even if she wanted to go on the transplant list but was advised by her team that it was the right time as she may have to wait years for one to come along!  Well it is all over with now, no more agonising will I get one or wont I.  I hope she continues to go from strength to strength.

Garden

I have been planting out spring flowers as I want to make the garden look pretty for when my sister in law and her hubby arrive for a visit in a few days.  Colin is working hard to get the vegetable patch finished ready for planting. I smiled to myself as I was directing Colin the other day where to put the plants and the snow was falling on our heads!  Fortunately the plants we have chosen are robust and will do nicely.  I bought them all for half price from B & Q. Not a thing wrong with them, strong sturdy plants but clearly new stock must have arrived so I was happy to take these old ones off their hands for a fraction of the price. We are now looking around for an arbour to sit where our barbecue will be. We think we have found he perfect one but Colin needs to do all his measuring just to make sure.  I cannot believe how far we have come in just a year of living here.  Crocuses are springing up around the garden in various parts of the lawn.  We have nothing like the 368 we planted but I think there will be many more to spring up yet before we are finished.  Mr Fox sees to have taken his bat home and we have so far not had any more issues.  I pray it lasts.  

And the misery continues

Though we do get an odd nice day here and there all over England we are still having far too  much rain for the rivers to deal with.  Year by year now it seems Hebden Bridge gets flooded and my heart goes to to all of those that have the aftermath to deal with.  We went in to the village a few days ago to go the the Rohan shop which always seems to escape the floods due to a tiny rise where they are.  I was gutted to see how much damage has been done and wonder how they can ever face sorting it out and continuing to live or work there.  Yes it is a pretty and character filled place but I would just need to walk away.  I realise of course that financially this cannot always be the case.  It just shows that we humans are a resilient bunch and will just get on with it no matter what.  It makes me proud to be British.

All for now.  Keep away from bugs!  Keep safe.

Warm love to all and thank you for those that comment, it means a lot.  

Carole xxx

CELEBRATING TRANSPLANT TWO YEARS ON - LYZ CLEMENTS

The weekend just gone saw us being able to join Lyz Clements and her husband John and son to celebrate two years post transplant.  Before having pah I never heard much about transplant and never met anyone who had had one.  Oh how times have changed and the word transplant gets bandied around as an every day occurrence. Of course the reality is it is still terribly hard to get a transplant and it is certainly no cure - just a way to hopefully extend life for as long as the organs last  Lungs are the hardest ones to cope with the transplant and so we rejoice whenever we know there has been a successful one carried out. 

Off we went and what a joy it was to see Lyz looking  very smart and a super colour.  It seems to be one of the first things that is noticed after a transplant - how the colour goes to a lovely pink and the lips lose their blue tinge as at last much needed oxygen is delivered to all parts of the body.  We both had lots to talk about and neither of us appeared to run out of steam for asking questions etc.  

John was so lovely and kept making sure Lyz had everything she needed -  drink topped and nice food to eat.  I liked him the second I met him and over the course of the celebration my opinion never changed.  He has taken on the roll of carer so well and must be such a relief to Lyz.  I also met Ryan the son and what a charmer he is.  He will break a few girls hearts in a few years so beware!!  

We also met the family of Lyz and they were so nice and so very welcoming - even though we did hog Lyz for most of the time.  Andy the brother in law talked a lot to Colin about men and their toys and I suspect it will not be long before we are visiting a store to buy a certain one recommended by him. We have enough mens things here but who am I to complain.


Lyz brought in an amazing cake made by her friend with lungs made out of icing as the main decoration.   The cake was a chocolate and orange one and truly yummy.  We bought a piece home for Izzy to try but not seen her yet for her thoughts on it as she took it home to eat.  However chocolate and orange are a great combination so I bet she quickly ate every bit of it.  

Sonia Marshall was there as she knows Lyz well and only lives 15 minutes drive away.  It was really good to catch up with her as she has not been able to attend conferences for the last few times due to oxygen.  I know oxygen is suppled once at the hotel but having to carry so many canisters to do the 7 to 8 hour journey is a nightmare.  Plus of course same needed for journey back. Lyz says the same thing so for them both conferences are a no go though Sonia loved them before going onto oxygen.  Such a shame.  Anthony the son of Sonia was also in attendance and gave me the biggest hug I have had for a long time.  He is all boy for sure and a whirlwind but very good manners.  I asked him if he looked after his mommy and he told me he just wanted to be hugging her all the time and crept into her bed in the night!  He was very impatient for the cake to be cut for sure! 

All too soon we had to return hone as we had the journey back in front of us.  We both agreed that we had a great time and it was so worth the effort  We do hope to catch up again in the not too distant future.  

Catherine Makin

Such a lovely girl as those of you who know her must agree.  Three weeks ago the call came for her to have her transplant.  This went ahead and we are all waiting  to see how things go for her.  She does squeeze the hands of the family when they talk to her and they were hoping to wake her up.  Sadly no recent news and I do not want to nag the family but of course we have all sent the best wishes for her a speedy recovery.  She is one the the nicest people I have met through ph and her family are so close and tight they will all be encouraging her all the way.  So are we Catherine so come on girl - you can do this.  

Meds and away days

As I will begin my selexipag in March we do wonder just what to do with regard to putting life on hold then we decided no - we will carry on as normal.  Of course this may well prove to be impossible but until I get on it and try to cope with the side effects { of which I know so well having previously had the infused form of it } we just need to keep booking nice things to do.   So we have got a few things sorted of which we hope we do not have to cancel.  

One of them is an away weekend with all the family in a superb country house in the Lakes.  It was a struggle to get enough rooms at the same time but ater talking to the manager at this one he was very nice and sorted it out for us.  Once again a long walk up a huge hill is in order { I do believe Scafell Pike} for those up to doing it which will be all but me.  There is lots to do in the area so I will be most suited and if I am not feeling the best I shall go down to one of the lounges  and sit in front of the fire with a newspaper. We are all excited to do this as it could well be the last time we get a chance as part of our family will be emigrating at the end of the summer.  They will be so missed by us all but of course this is what what they want and we will wish them well on their journey to their new lives halfway around the world from us.  

The house gets superb ratings and is 4 star but we have decided to try it out too before we all go so are going to book a couple of nights away before then.  On arrival we are given a cream tea so we will check out all is in order!  We are waiting to see about dates as our friends are hoping to join us too, this time none of us are taking children!! We always go away with them once a year and  take some of our grandchildren. This treat is for us - no kids allowed!  We will however be taking them sway shortly after so they will not be missing out. 

On talking about short breaks with more friends it transpired they too want to visit Krakow  ( there are different ways to spell it but we chose this one as the correct Polish one.  It is pronounced Krakoof which surprised us. It is 75 years since the liberation of those in these dreadful camps through world war two we want to pay homage to all who lost their lives in such a dreadful way. We have visited one camp before and I know I shed so many tears and I know I will again. So that is three things on the agenda plus the one away with the troops in our motor home. I just hope that the side effects are tolerable.  

Friends of ours are due to come and stay for a few days, one of who is already taking the drug so it will be interesting  to talk to her and see how she goes on.  Some of you will know her - Paula Joanne Smitham and her hubby Neil. We are already making plans here as to where to take them if all is well with both of us suffering with pah.  I know she wants to go to visit Shibden Hall, one time home of Gentleman Jack so of course that is firmly on the cards.  As for the rest we will see how we go.  

Funny

Colin was having a few days away in the motor home and decided his hair needed just a smidgen taking off before he left.  Calmly he got out his razor and read the setting and proceeded to take a huge swathe out of his hair.  I was looking on and saw what was happening just a second before he did as he was shielded by his hand.  He had taken it right down to the wire!  He was bald!  He looked at me with horror in his eyes and panic too. Of course there was nothing for it but to take it right down all over.  He had read 1 as a 5, he does need new glasses and this has forced his hand so they are due on Monday next week. He has been wearing a cap all week but he is fortunate that the weather is on his side.  I did of course shoot next door to tell the family and when Colin arrived a few minutes later they were busting for him to take his hat off.   He is fortunate that it does actually suit him and has decided that when it grows back he will keep it not so short but at number 3.  I have been taking the micky a few times though telling him he did not need shampoo etc.  He was not amused.  

So another blog and I thank you for reading it.  Comments are always welcome. I do wish you all the best of health and also hope the weather is being quite kind to you.  We had snow here today but it was just a sprinkle though we do see lots on the hills around us,  

Warm love to you all

Carole xxx

WELL WE DID NOT EXPECT THAT

Our family next door had friends with children staying for a few nights just after Christmas.  The kids needed to blow off steam so as we were headed to my doctor we asked who wanted to go with us and three of the kids were well up for it.  Off we set and we had not gone very far before one of the group notices a squirrel looking very frightened and appearing to be stuck between a down pipe and a wall.  All the chidden begged Colin to free the squirrel so without ado Colin set about to do just this.  He was wearing gloves so it idid not appear to be a big issue.  How wrong were we.  The ungrateful squirrel (though of course just acting out of fear) bit Colin with a ferocity we would not believe.  Not one but five bites with the bigger one extending all around his finger.  The blood poured and poured which concerned the children a great deal and I must say me.  

What were the precedents for being bitten by a squirrel?  We headed off to a pharmacy that was close by to get sterile wipes and dressings as the wounds continued to bleed, not just a little but such a lot.  The chemist took one look and told us it was an A & E job, that he would not touch it.  We were on our way to my doctor anyway so decided to ask them as who really wants to sit in a hospital waiting room for hours on end.  No joy to be had at the docs as we were informed that as it was a squirrel bite it needed a different tetanus jab than they gave.  I continued into town with the kids whilst Colin set off for the hospital.  Fortunately he was only an hour waiting and he came home with all his wounds dressed, a pack of antibiotic tablets and a sore arm from the tetanus jab.  One thing became clear is that never again would he help a squirrel in distress.  His favourite walking gloves now have holes in them too so a disaster on all fronts.  

Out and about over the festive period

Well yes I did manage to go to the Indian Restaurant on the 23rd December but did not tarry, just ate and ran, well more shuffled out when finished.  The food was excellent and well worth the effort.

I managed a couple more meet ups with friends.  We attended our once a year catch up with the troops as we are called.  We do more than once a year at different times but this one is set in stone that on the 24th December we all meet up for a meal.  This year it was at a great Italian place we know and once again we were not disappointed in the food and service.  I managed to stay the course and was astounded that I did given quite how bad I had felt only a few days up to this meeting.

We also managed to meet up at a smashing fish place with the Captains (a group of about 12) and had the most superb halibut steak I have had in years. I feel sure it would have been cooked with loads of butter but my did it taste good.  So yes I was able to meet up with friends which was very pleasing.

My back improves daily.  Though there is nothing I can do about my deteriorating heart at least I am not in as much pain as I was and can see a light at the end of the tunnel.  Never do I wish myself nor indeed anyone else to experience such pain, in particular as I could not take pain meds to help to relieve it.  

Izzy

Izzy had on her Christmas list that she wanted a fringe.  I truly did not want her to have one but her mom is wise and sorted Izzy out a pamper time at my daughters hairdresser.  The hairdresser was going to go over all the pros and cons of a fringe with Izzy to make sure she made the right choice for her.

The last thing I said to Izzy when she left us was please do not have your hair cut into a fringe.  See there is so much you can do with hair all one length and my fear was that a week or two after the hair was cut she would regret it.  We waited at hone until we heard the doorbells ring.  I stayed in the dining room whilst Colin answered the door  I dreaded her coming through but in actual fact she looked amazing,  When I told her she looked relieved that I liked it and kept asking "really grandma, really you like it.? Yes I did  though I think there is one person not quite as happy for her as we all are.  That is Chris.  Chris is Danielles partner and an amazing step dad to Izzy.  He truly loves her and I think when he saw her he saw is little girl was growing up.  She does look older with a fringe and he seemed to find it more difficult to see than we all did.  I think he has come to terms with it now but it did take a while.  

What will 2020 hold for us

I am hoping there will be more break throughs in medicines, not just for us but for the other rare diseases, and the ones not so rare.  I would love a year that sees more treatments, more options for us all.  Maybe if more money is thrown into the mix we just might do it.  Who knows.

One thing I hope it does not hold for me is another letter that dropped through our door dated the 31st December from Health Care At Home.  It stated that they were about to knock me off the list for my life saving meds as despite them trying to get me on the phone on numerous occasions I had not answered any of their calls.  We were livid. - in particular as we log all calls and not one had come from them.  Not just my own phone number had not been rung but neither did the house phone nor Colin's.  So they were lying and yet they informed me they were going to talk to my hospital to inform them.  Of course we immediately rang them up to ask them what the heck they thought they were doing and that the letter was so ridiculous as we could prove to anyone who cared to see that not one person had tried to contact us at all.  The lady on the end of the line was very apologetic and said she had had quite a few phone calls to say exactly the same thing. Clearly there was a problem at their end, somebody lying to say they had rung us all up.  She was getting the people in the know to deal with it. I was informed I should throw away the letter and my meds are now on their way. So who did this, who said we could not be contacted, who had the right to withdraw all my life saving meds. Quite scary and this needs to be sorted once and for all. I used to like this company but recently have had more and more issues with them.  Let us hope that 2020 they manage to get their act together and treat us with respect, not lied to or lied about.  

Need to sort it

This is my scooter that needs sorting.  I have no idea how far it will take me or whether the battery is good or bad.  Though it does charge to the top I am very nervous about being stranded outside with no battery power.  So this week I will set off on it and see how far I can go.  Remember we have a great deal of hills where we live so it needs to be able to cope well.  I shall just keep going and when I fear there is hardly any power left I shall ring Colin so he can collect both me and the scooter and take us home.  Though I have no issues on trundling along flat canal paths with it is has been quite a while since I tackled any hills and it is better to be safe than sorry.  That will be one of my tasks for this week.  Exciting life huh!!!!

So life is once again turning around and being good to me.  We have a few hospital appointments to get sorted and I have my yearly colonoscopy coming up shortly but I want to try to enjoy as much life as I can before I knuckle down and take the selexipag.  By the way my date to begin it has moved to March now as there are quite a lot on it and the monitoring of it takes the staff a lot of time so they want to trundle us out in batches.  I totally understand that.  In the meantime I will try to enjoy life to its fullest.

I wish you all the best for 2020.  I am not going to hope for world peace and all of that because that will never happen.  I will however hope for you all peace in your own lives and as good health as you can get.

Warm love to you all and many thanks for all the encouragement I received from so many of you when I really was in despair due to my back issues.  I think if I continue with the physio it will eventually clear up.  

Take care

Carole xxx

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