Saturday, 28 April 2018


Goodbye our ph brothers

We lost Glenn Shakotko and Pete Duffy recently. They both suffered from pulmonary hypertension. Once again it sent much sadness around our communities and much hurt was felt by the many that knew and loved these men.  So once again we all live with the horror of losing more and more of our ph family whilst waiting for a cure.  I KNOW they are working hard for us but a cure even if it came tomorrow is too late for our ph brothers and sisters lost to ph.

I never knew Glenn but I do know by the shock waves that went across our community that he was a very popular man in the world of ph.  I believe he had fought for 15 years this terrible condition.  He did not let it stop him though and he lived his life to the full, I know he was an amazing shoulder to cry on for many of his ph friends.  Apparently he was always happy to talk and to give advice to anyone that needed him.  So why must we keep enduring these losses, all good people, ones who make a difference.

Pete Duffy

Now Pete was one of our own here in the UK and he lived not too far away from me. We talked often,  sometimes by telephone but mostly on our forums in the long dark lonely hours of the night when all kinds of demons come out of the closet, scurry into our heads and make us have a need for somebody facing the same issues.  How many times would we open our computers in the early hours to see Pete "talking" to other ph friends.  Often he would tell us he was feeling hungry!  So would begin conversations with some of our other ph brothers and sisters who could not sleep.  Pete would often worry about his two precious girls, he was so very proud of them and feared leaving them without a dad.  Suffering with other issues Pete struggled for quite a while before his body said it was enough, it was time to leave this earth.  His loss will be felt by many on our forums here in the UK and further afield by those that were friends with him.  

So what kind of low life are you.

Some low life went into our new house and cut out all the electricity cables, likely for the very small amount of copper in them.  At best they would not have been paid more than £10, though the cost of new undamaged cables is of course expensive.  They would have had to take time to strip it and then take it to a place that buys copper.  Hardly seems worth the effort for them though of course it took our electrician hours to put all the cable in place. 

After they had completed their theft one of them then decided to poo in the jumper left by one of the builders.  No doubt their small mind thought of how funny this was!  Now all the work needs to be redone again taking time and money to get it back to where it was before.  { the builder said he had heard all the poo jokes ever written since this incident} !!

A lesson learnt but too late.  The builders had been told time and time again to secure the house.  Our windows were in but we did get the fact that they wanted to leave the doors until last as lots of going in and out with work tools  would be going on in the house and they wanted no damage.  They were supposed to block off all the entrances with wood, keeping only a small wooden door for the builders to get in an out.  Maybe they were too intent on doing the jobs inside the house but it has cost the building company dearly.   On the positive side the wooden doors have been fitted all around now which leaves a secure house as long as nobody leaves a window open.

We are led to believe it was kids, the height they cut the wires was not too high, no ladders were used, though there were plenty around.  A professional thief would not have left a scrap of wiring in the place.  I hope this is not a portent for things to come.  The area is a very good one with beautiful houses, I pray we are not seen as an easy target right now.  For us it has not cost anything. the onus is on the builder to insure the property whilst it is being built.  I hope we do not encounter another incident such as this again.

Getting better

Life has been pretty awful for the last two or three weeks.  After my trip and overnight stay at the hospital I hoped all would soon be over but no, I was slammed with an almighty chest infection.  I took my emergency antibiotics but they were having no effect really.  A visit to the doctor and he gave me some different ones that make me feel pretty bad, cause sickness etc BUT they are working well with my infection.  Only another three days to go on them thank goodness.  

It is rare I get scared with illnesses and my ph but I admit that this time I actually did.  Being immobile in bed, too much effort to do anything but to try to get breath into my lungs made my mind wander to a dark place.  I could not get out of bed without help, could not wash etc and the effort of holding anything was too much so not even all you guys on Facebook to connect with!   I ate the bare minimum which concerned Colin but the effort it took was not worth it to me.  

I thought about death, I admit it.  I did wonder if this was going to be my end. I know chest infections can mean the end for us so of course this came into my mind.  I wondered who would miss me, the family and friends who I no longer connect with, would they miss me when it was too late?  I worried about Izzy.  Would she remember me, had we done enough for things to stick in her little brain that there would always be a small part of it reserved for me.  Of course my children came into my head, thick with a headache so bad I felt I could scream.  Would they ever really know the depth of my love for them.  I wondered f they would still miss me years later as I miss my own parents.  I wondered if I would die without them by my side, without that final hug or touch of a comforting hand. 

Strangely enough I was not scared of death, in fact at times as my compromised lungs were screaming for the next intake of breath that barely touched them I would have welcomed it.  It just seemed too hard to keep going.  But bodies are remarkable things and the healing properties it contains gradually made little dents into my fluid filled lungs, daily I could feel myself improving, though only marginally at first until I woke today feeling a lot brighter.  Yesterday though I was hit with a sickness bug!!!  Well not a bug as it did not last long but boy did it slam me.  I barely made it to the loo where I was left on the floor a shaky mess.  I could not stand up afterwards despite trying so hard.  I think my body had needed time to recover from my infection and this last assault was just too much.  Fortunately I had my phone with me so I rang Colin and asked him to come home.  In minutes he arrived and helped me to my feet and to my bed....... again! 

We will now see what today brings.  I am up, though not yet dressed but obviously fit enough to be typing this.  My next task will be to order all the new electrical equipment for our new home.  I know that we will not need to take delivery until the time is right but this is a job I want putting to bed so to speak.  It is a job I can take care of as Colin has to deal with so many.  

Today the last of our holes for the air intake system we will be using will be completed.  In around one week all the scaffolding will be removed from around the house as all works will be internal only.  

I know the plans have been sent off to whoever it is that deals with our underfloor heating and I know the final level of the said floors.  Plumbers have put  in essential pipework etc and the house is so fully lagged you would not find an inch of space to add more, even the garage is fully insulated with this space age stuff they are using.  Our bifold doors came yesterday and were fitted and I am told they look really lovely.  Holes have been cut into the walls to enable us to have the fire we struggled to find a solutions for before in a sealed house, we found one!!  So daily an army of men go to work on bringing this house to completion.  One thing if any burglars try to get into the house again they will be in for a nasty shock now as the builders have fitted temporarily devices that would take pictures of them and alert the authorities.  Wish it had been done sooner but I feel a bit more reassured now.  

Once it is finished I intend to have all the new gadgets that show if anyone is lurking around your property wherever we are.  I have no reason to think it will be needed, the area is a good sound one, the thieves likely being opportunist kids, but the truth is nowadays nowhere is safe.  How sad that we live in a world where people steal and destroy others peoples property.  


I want to escape!!!  I think both of us could do with time out.  As May day is coming up we want to avoid that like the plaque, too many people around to be able to have a nice peaceful time.  I have been looking at places we have been to before and really enjoyed.  I always remember Malham and the peace of this place with so much of interest surrounding it.  Malham is a village set in the Yorkshire Dales.  Rolling hills greet you and limestone landscapes surround you here.  Yet there is so much to do if you want to explore.  For those who enjoyed Harry Potter the cliff just half a mile away from the centre was the backdrop for the Deathly Hallows.  Just over a mile away is Janet's Foss,  a truly wonderful waterfall reputed to be the home (behind the falls) of the Queen of Fairies.  So for the whimsical ones such a lovely place to visit.  The pool was originally used to dip sheep in many years ago but now many a travel weary walker has stopped to take a refreshing dip here. 

For walkers who enjoy a scramble my husband and I walked through Gordale Scar and enjoyed such a beautiful valley and limestone ravines, well worth the scramble at the end.  To top off the wonderful place there is a glacial lake called Malham Tarn. I have eaten a few picnics sitting by the side of this tarn in my time.   This tarn was the inspiration for the book The Water Babies. A Fairy Tale for a Land Baby.  This is the highest lake in England being 1,237 feet above sea level and only one of the eight upland alkaline lakes in Europe.  

So you can see why I simply must go back and hopefully this coming week.  I know I cannot explore it all as fully as I have in the past but I intend to see and do as much as I can.  The last time we stayed we resided in a lovely hotel called Beck Hall and I want to go there again.  The history of this place is so sweet.  It nestles by the side of the river and it used to be a wayfarers hostel back in the 1920s.  Years have rolled by and now this quaint cottage has grown to become a truly lovely place that has the most beautiful rooms and an amazing menu to enjoy after a day seeing the sights surrounding the area.  If anyone fancies going here that owns a dog then know that it is a dog friendly hotel.  Why I love this place is that it is set in such beautiful surroundings and if it is not a day to explore due to ph the gardens themselves are so lovely to try to meander around.  sit and listen to the river tumbling over rocks while you rest a while.  Go and try it, you will not be disappointed.  

So hopefully when Colin returns today I will be in a position to know if it is feasible, if we can go away in the next few days or if the house will once more demand his attention.  He is thinking not but  the house keeps throwing us a curve ball!  We shall see.  

Tour de Yorkshire

This bike race begins on the 3rd to the 6th May, with the final stage passing within 200m of our home.  Colin will go to take pictures of them departing from our famous Piece Hall, newly renovated and attracting lots of visitors it is a perfect place from which to start  I wish them all a great race and a safe outcome.  Watch it if you get a chance, we have lots of hills around here to test them and the most amazing countryside.  


She has won another award from school and so wants granddad to go and see her receive it.  Though I would love to go I think I need a day or two to come around from my illness so i will spend the day pottering and dealing with kitchen stuff as I said earlier.  Izzy is upset already at the thought of leaving her teacher behind when she moves up a class, she declared him to be funny too, something she believes her next teacher is not known for!!  So already the dread of a new class is looming for her.  I know she will be ok when the time comes, children are naturally  resilient and she will forge ahead when the time comes.

In the meantime she continues to be very happy in our company and enjoys staying over with us but the most heartwarming words were spoken by her a few days ago.  My daughter rang to say that neither her or Chris  would be home when Izzy arrived there from swimming so would Colin use his key to go in and, of course, sit with her until one of them returned from work.    Izzy rang me and said "grandma I am home and neither of my parents are here".  Of course she was fine with granddad but was just making a statement BUT what a statement.  She did not say mommy is not here, or Chris is not here but BUT that neither of her parents were there.  My heart soared as it means the three are now family.  Chris is no longer the outsider with her but has become her parent!  His hard work at showing her he loves her has paid off,  so this family unit is now strong.  She tells me she loves Chris and I can see it when I see them together.  I am happy!!

Enough from me now, I must away to attend electrical things!!  I hope you are all doing ok.  Enjoy the May Day for those in the UK,  I have not looked to how the weather will be but whatever your plans enjoy them.

Thank you for reading and for those that advised me on various things through this recent illness your help, as always, was invaluable.  

Warm love

Carole xxx

Monday, 16 April 2018


Thank you all for your well wishes after my weekend spent in my local hospital.  I was very touched once I arrived home and read them all.

I am ok.  I need a little rest before I get back to my normal ish self!  We know well with ph the blips we encounter along the way and this was one of those, though very scary at the time.

As with most of our turns they arrive without warning, mine certainly did.    Colin was talking to me in the car and the sound of his voice was getting unbearable as my head was ready to explode.  I felt sick and my heart hurt and also down my left arm and shoulder.  I must have been squirming in my seat and Colin looked over at me and said my face was vey red with traces of grey. We were on our way to an office to sign some papers and I thought by the time we arrived I would feel a little better. .  

By the time we arrived at the office my legs just did not want to walk.  I sort of shuffled in and sat down as soon as I could.  A drink of fruit tea was given and I thought I would soon come around.  No chance.  However I am not one to give in so insisted we went to look at a form of security we were going to get for the house after we had signed the documents at this office.   I really should not have bothered as I could barely stand straight, I kept bumping into Colin as I swayed whilst standing.  We aborted that job but Colin had to practically carry me to the car and I could not get in my seat myself, my legs were turning to jelly.  Once in I actually asked to be taken to hospital.  I hate this as I knew it meant the end of any hopes of a holiday abroad for a whole year.  We are always asked if I have had any unplanned hospital visits in the past year, planned ones are ok but unplanned means they really will either bump up the insurance or not insure at all.

As Colin was taking me into hospital in a wheelchair I said I thought I was going to faint.  I felt so bad.  Once in a room with somebody taking notes I just felt myself going. Before I knew it I heard the man saying crash and without ado I was wheeled around to Resuscitation.  They got me onto a trolley and wired me up to all the monitors.  The problem was they do not have a clue about ipah and tried to give me nitroglycerin, a definite no no for me.  Then this doctor ( who appeared to have no empathy for anyone in these bays ) said I must have 100mgs of Viagara, Once again I refused as I had only had one an hour before.  The next thing they tried to give me was warfarin.  I explained that I already take 5 megs daily so he went away and came back with something else   Called Gopa something or other.  I just took it, I was beginning to give in.  I had already told them  I was not to take opiates as I was intolerant so he said I could have morphine!!!  Again  I refused.  My oxygen level kept dropping and the beeps kept going off  They lowered my bed head and raised my feet.  After 2 E.C.G's , an X Ray etc they could not see what the problem was.  I tried to tell them it was my pah playing up.  What could they do though, nothing really.  They could not make any sense of my blood pressures as they kept rising high then dropping really low. 

I think what happened was my levels in my lungs must have risen sharply and suddenly to a degree that my body just could not cope with it.  This happens with us, we know that and even our specialists have no idea quite why they go up and down as they do.  Generally we cope with it ourselves but as this was particularly bad we felt the safest place to be was in the hospital.  They were reluctant to ring my specialist hospital, quite why I do not know but there it was  We must have asked them three times at least but our words well on deaf ears.  

In time I was taken to the coronary care ward and put in a room on my own.  My arm began to bleed badly where my catheter was as by this time I was way overloaded with warfarin and the other drug that acts the same.  There I stayed.  At 9.00 pm a nurse came in with 100mgs of sildenafil.  I refused as I had my own but she tried to get me to take hers and not mine.  I explained that I cannot take that particular brand. 

Back in 1989 British Pfizer scientists created a drug called sildenifil citrate as they believed it would be good for controlling high blood pressure.  They coated this compound and marketed it under the name Viagara.  Once the patent ran out, or in this case a deal was made with other companies to make this drug then other generic brands became available called sildenafil.  All well and good and a very good cheap option for the NHS saving over 10 million pounds a year when those taking Viagara were put onto the sildenafil pill instead.  Sadly the coating used by the generic forms made me very poorly so I had to be put back onto the original pill, the one made by the scientists who created it and called it Viagara. My local  hospital had the generic ones and anyway I always take my own.  I think I was an enigma to the staff as they were batting in the dark with an illness not known to them  I did have a couple of doctors come in and ask if they could listen to my heart as they had never heard a second heart sound as ours has. 

A very restless night with them coming in and taking bloods etc and another tussle in the morning when I had to refuse their meds in favour of my own.  I know it is absolutely not their fault, but I was feeling frustrated as they would not ring Sheffield!  In the afternoon a consultant cardiologist came in to see me.  He was really nice and was shocked he said when he learned what they had given me down in resuscitation.  It was no surprise to him then to see the state of my cath site due to being overloaded with meds for my blood.   He listened to my heart, checked my ankles, which were still slim so not water logged and of course as always looked at the right side of my neck.  He expected it to be bulging etc but it was not. 

He admitted he was at a loss as to what to do to help me.  He wanted me to stay in another day as my colour was still high and my legs very weak and wobbly.  Colin and I talked and decided we understood pah better than them and now the crisis was over we could deal with it at home and at rest.  Though the doctor  agreed that we knew better how to cope with it than they ever would ( and this episode absolutely showed us we were right  ) but said at least if anything went wrong I was in the right place in the hospital.   I did not say it but I thought differently.  Had I taken all the drugs they tried to give me in resuscitation I think  would be dead or in a very poor place right now.  

I understand what they were doing was the correct thing for somebody having a heart attack, but not for me.  They did their best, their intentions were good but my faith was lost.  Had they made a phone call to Sheffield as we asked I would have more reassured that they would listen to others that knew my illness better than they did.  We promised if I felt bad again I would go straight back and we went home and I went straight to bed.  

I had a good nights sleep and I feel I am coming round again,  not well enough for a walk yet, staying put at home is my only activity for the day but I do feel relief that this crisis is over.  

Hopefully tomorrow we will be going to a granite factory where we can choose the piece we want for our new kitchen.  It all seems overwhelming does the house right now, maybe that is what tipped me over the edge so I have enlisted my daughter to look out lights, pendants etc we need for all the rooms.  It sends my stress levels too high which we know is really not good for us.   Anyway she has really good taste so I know  I will not be disappointed.  

So that is all for now, just wanted to update you all and to again thank you so much for messages of well wishes and support, it means such a lot.  Colin was astounded to see all the messages but I said that is what we do, we support each other! After all we are a rare breed and nobody knows better than us all the vagaries that come with our very rare condition.   

Love to all

Carole xxx

Wednesday, 11 April 2018

THIS IS ALL MY FAULT. I am an idiot.

I cannot believe my stupidity that brought  me to how I am right now.   Something so very simple has knocked me off my axis and flat onto the floor.  I deserve this as I knew the rules about ph, knew what we could and could not do safely.  So why did I disregard them and think I knew better, that all would be good.  The only good thing about any of it  is that I thought I was doing good, believed I was helping my friend.  So now I pay the price and am waiting until my PAH stabilises  ( hopefully).

I have an iRobot vacuum cleaner.  I call him Robert and he has done an amazing job for me over the last thirteen years, working really well with very little maintenance.  His battery needed changing, a cost of £40 so I decided to have an upgrade of him and get one of the newer models.  I was telling my friend this and she asked that I give her my old model,  of course she would pay for the battery.  My new iRobot arrived as did the new battery for my old faithful one.  I changed the battery and cleaned Robert so he was sparkling and ready to hand him over to my friend.  She was too busy  to help me as she had a crisis on, and as Colin was very busy in our new house I decided that as I had been doing so well with walking etc I could do it.  I could bag up Robert and all his paraphernalia into two bags and take him to his new home.  She lives opposite us virtually in the park and up three lots of stairs.

The stairs would have been ok but the weight of Robert was not doing me any good.  I could feel myself getting palpatations as I climbed each stair and halfway I truly thought I would faint.  I could barely see, my vision kept going odd on me.  On reaching the top floor and her house I threw myself onto the sofa.  She was very busy trying to sort out a scam from Talk Talk so I just sat until I felt I could get myself home.  My bed was an absolute MUST place to be and there I stayed until Colin arrived home. As I told him what I had done he was rightly cross.  He would have carried it over himself later.  I truly believed I would feel better today but I really do not.  My legs are very shaky and my head very swimmy. My hope is that I have not put too much strain on my heart that it has caused irreparable damage,  Time will tell but I know for a fact I will never make that mistake again.  My life is more important than getting a vac to an elderly neighbour.  I will learn to say no.  My specialists know much more than I do about the can and cannot of ph.  I have learnt a valuable lesson.  No matter how well I feel I am doing I must still obey the rules of ph, I am not invincible.

( Two days later and I feel ok  I actually walked to our new house so I managed to get my steps in, feeling thankful)


I took her to see an eye specialist as she seems to be leaning closer over her books wherever we read.  As I had my first pair off glasses quite young I am aware that even young children need eye tests early.  I have since had my own eyes lasered so have no need of them but she just might have.  Izzy was very nervous but she need not have been  The specialist has a girl of his own aged 7 so knew well how to put her mind at rest.  She did really well and at the end of the appointment he told me that her eyes were good, in his words they were 20/20 or even better if that was possible.  Now how can you get better than 20/20 I just do not know but anyway we all left feeling grateful that she is O.K. though she was a little sad as she quite fancied glasses!  So different to my day when we had the awful national health ones thrust at us until such a time as parents could afford something better.  

Her usual holiday in the motor home came to a disastrous ending after just one night.  Sadly all the rain meant the sites were getting very boggy and the first morning there was a knock on the door and a kindly warden told them that they were evacuating the site, all had to leave as the rains continued to creep up ever nearer.  Home they came, van unpacked again and as Colin was telling me all that had gone on, how hard he had tried to get another site Izzy just ran over to him, threw her arms around his waist and said "never mind granddad you did your best"  I am so thankful she accepts things easily.  Right now she is in Centre Parks with her Nana Joy and Harrison  being thoroughly spoilt and having a super time.  

She has been thrilled to see that the nesting box she made herself last year with granddad is now in use.  There is a family of Blue Tits using the box, the mother is in and out so there is much to look forward to when the eggs hatch and the babies appear.  We love her to appreciate nature but the cherry on the cake was that it was the box SHE made for her garden.  Still not got around to helping her to make a nesting box for a hedgehog but I think it will have to wait until the house is ready now.

House News 

Well this is really moving quickly now.  Upstairs electrics all in, all the insulation and windows are fitted and now they are plaster boarding the second floor.  Colin is very busy with the air control system and he has worn his thumbs down almost to the bone with the concrete.  His drill was not up to the job of some of the work so I treated him to a new one, a stronger, more robust that will easily go through the walls like butter.  He thinks a couple more days and his job will be done.  I know he will feel relief as this is a job never attempted before, very new to him and he has had to feel his way carefully so as not to upset the balance of the eco part of the walls.  I feel a little guilty as today is his birthday and he is working hard and getting very dirty doing this job but it as to be done.   It is not something I could help him with either which makes the guilt even worse but there it is, soon be over and our new house will all have clean air in each and every room on the hour every hour. 

When you get taken short!!!

Most of us with ph take some form of diuretic as our bodies struggle to do the jobs normally taken for granted.  Our organs are all compromised so we accept we need help to cope with certain functions.  I take 4mgs of frusemide daily to help my body expel fluids and it works really well.  On the days I intend to be busy in the mornings I leave it and take it later in the day.  However some days I forget this rule and take a tablet then pay the price, needing to keep running to the loo.  So this made me smile the other day as I was walking on the canal to my church.  Sitting nicely at the side of the canal some wag had placed a toilet in all its glory!  Now it will not stay there for so long as we have amazing people that keep our river and canal clean and neat.  For me though it brought a smile to my face as right as that moment I was just thinking I could do with spending a penny!  I think that the ducks and geese would not bother me whilst doing it but the thought of the walkers and cyclists definitely put me off the idea of making use of the facilities!!  I waited until I reached church.

PH News

I know I bang on about trying to exercise when you can, hard with ph I know BUT the benefits of managing to do some has been proven.  I also take a turmeric capsule that contains the curcumins that we need to help with our joints.  Like most patients my joints did suffer badly but I needed to share this with you.  Once taking the turmeric for the last two months I have felt such a benefit.  I take just one a day as this particular tablet tells me to take, I have LAMBERTS  High Potency but I am sure that any health food store can direct you to other brands.  Along with that I take Vitamin D as this is vital to help our hearts I believe.  I take it in liquid form, two drops daily giving me the correct dose.

Anyway I digress this was to direct you to the Pulmonary Hypertension News Weekly Digest and an article that shows patients with PAH outcomes are linked to exercise.  Do not throw the book at me if exercise is totally out of your wave length, I get it.  I still have my duvet days, my days where lifting a cup is too hard but when I feel up to it I like nothing more than to walk, even in the rain with my face lifted up to feel the rain on my face.  I love knowing that my heart, which is a muscle of course is being worked.  My core is benefitting too and all my body feels so much better when I have managed to get this exercise in.  Walking with sticks {poles} might be helpful and we are told that you actually burn more calories using sticks as you are pumping your body more.  

To be honest the calories burned do not matter to me cos I need to confess I eat more when I arrive home!  It is just the sheer exhilaration of doing something that is helping my heart and as talked about in the Digest it leads to better outcomes for us all.  I walk on my own but I also have a friend who, if he is not too busy walks with me.  It always makes the walks so much easier and the steps just melt away.  It is also a good indicator of how you are doing as you should be able to walk and talk at the same time.  

Keith Andacky who was the first patient to have Denervation in the U.S.A.  has had his four week check up.  All appears to be going  well and he is already walking a little further than his test pre denervation.  I am sure we all wish for him to continue from strength to strength.  The more people with this procedure that do well it seems likely that in time it can be offered to many PAH patients.. I know for sure I have benefitted greatly thanks to this and I hope the same goes for anyone else who has either had it or is heading that way.    Always lovely to have a new option on the books so to speak.  

So there you have it  Up to date again.  Once again thank you for reading.  I almost thought about leaving Facebook because of all the mess they are in due to sharing our details to others.  I came within a hairs breadth of clicking off but then I thought of the benefits I derive from it, the PH Sites I am on, all the friends I have made and the fact that I would not be able to blog either so I changed my mind.  I do know that Facebook really needs to get its act together now though as it would not take much for us to just leave.  We need protection.  

Warm love to each and every one of you, go well 

Carole xxx