Thursday, 28 June 2018


An English /American Drama

So much going on around here right now.  If one decides to go for a coffee in our park you are likely to brush up against the likes of Suranne Jones, Game of thrones star Gemma Whelan, Timothy West and Pete Davison to name just a few well known faces.  The reason is that they are filming Gentleman Jack, the real life story of Ann Lister  who lived in Shibden Hall and was a lesbian long before it was acceptable, all kept very quiet in those days.  Ann was a fascinating woman who kept diaries and wrote about her lovers in code.  She was a mountaineer and a traveller who was fortunate to have inherited great wealth from John Lister.  If you are interested in things such as this you can find much about her on google.

There is an enormous marquee on our moor that took days to prepare and many lorries declaring they are tv crew dotted all around.  I love history and as Shibden Hall is in my town and such a lovely place I am so looking forward to watching this  Drama when  it comes to our tv screens later this year.  I do hope others who read this blog look out for it and watch it too.  It is eight series long so for sure my tv planner will be switched to record each one.

Raising Awareness for PH

This is a constant with me. Whenever I can I like to use my backpack given to all here in the U.K. who attended our conference. Bright orange it certainly stands out and the words PH can be clearly seen.  I have had some people ask me what it meant and I am always happy to tell them, to show that there are hidden diseases in the world that are so devastating.  I have also ordered from America a T Shirt with, I b believe, 365 names on it of people like myself who are suffering from ph.  I think this is the second shirt that has gone on sale like this, though of course different names.  I can’t wait to wear mine and as I type this it is winging it’s merry way to me from America.  I would love to hear from those who already own one if you have had any comments when wearing your shirt.

I think one thing that unites us all with ph is that we are tough.  After the initial shock and horror of being diagnosed with a life shortening disease we show the world just how tough we are.  We cope with so much from day to day that a healthy person can have absolutely no comprehension of as we try to hold it all together, to show a different side.  I am proud to belong to groups of my ph brothers and sisters world wide.  We will fight as long as we have breath in our bodies, through all the horrific side effects of the meds just so we can live another day, week, month, year.  There is also the hope that we do not succumb to this disease, that the cure is around the corner. So talking about meds it leads me nicely on to ........

Our admin Nicole Burish

Congratulations to Nicole who has now transitioned over from her pump to oral medication!  I did this seven years ago so I know well her jubilation.  I think it took three days to transition over, she said she suffered a bad headache initially but a small price to pay.  Her aim is the one we all wanted when on the line which was to go into swimming pool or take a deep bath. She will now be able to do all of this without fear of infection travelling down the line to her heart.  Oh and Nicole, the joy of getting rid of all those gloves, the syringes, the lines, the swabs and everything else that goes with the mountain of equipment needed for the line.

It is fair to say that it is not always easy coming off the line and there is a tine needed to get used to the changeover.  Nicole herself as well as the headaches  is suffering pretty badly at the moment with a stomach ache that feels like "her belly is on fire".  She is in touch with her ph team though so they have told her it is to be expected at this stage of transition.  She is a trooper I know and will cope until they subside and her new life begins line free.  Even with the side efforts she has she feels jubilant and can barely believe that after three years she is now unencumbered with the line.  We need to remember that it is thanks to the line that her heart has now reduced in size and her pressures have dropped significantly to allow this.   

So take heart those of you still on pumps, or just beginning your journey with the pump.  It may not necessarily be for ever, nobody can say until they see how your pressures drop etc.  I know that I personally wish Nicole all the best.  Most of all I wish you enjoyment of now being able to do the things you have been excluded from with your son.  Go girl and enjoy.  


At last the day  has arrived when I go for my injections into my vertebrae, my hope is that this time it works as the last ones did not at all.  Over time my pain intensified so that it curtailed my every day life to a huge degree.  I hope that now this can change and I can get back to my own normality. Pain, as you all know, is such a terrible thing and of course we are limited in which meds we can take to try to ease  it.  I must confess to overdosing a time or two but hopefully no more, please hope with me that this time the result is a pain free existence for some time to come.

(Home now from my injections.  I told him that the last ones did nothing at all so this time he delved around quite a bit trying to get right into my vertebrae. He said often patients do well with it just running along the top but clearly it does not work for me.  Playing the waiting game now to see how it goes. )


Our house  build came to a standstill except for outside works all thanks to one person.  That person is a plasterer who had a few personal issues so we did not see him for two weeks.  In that time works that should have been carried out had to be put on hold.  Joiners could to get on with their work or electricians, nor could any of the plumbers.  We were devastated to go down day by day believing his reassurances that he would be in only to discover he did not make an appearance.  Consequently all internal works stopped. Yesterday we discovered that once again work is going on, he is doing his bit with his uncle ( who owns the plastering company } coming  to help him when it comes to the very difficult parts of the walls and electricians were buzzing around fixing lights to the outside walls. Two people were at the front door erecting our porch so once again we are thankfully on the move.

We had a mishap when the tilers finished tiling the upstairs bathroom and it was awful.  We went in and Colin began to tidy round and saw to his, and my despair, that the stone resin shower tray had a crack in it.  It was not in when it was bought so quite how it happened we have no clue.  It could be down to three services, One thing for sure though we need another one so that is now in hand.  Fortunately  we saw it early on so that the tilers could come back whilst the tiles were setting and take the ones surrounding the shower tray up.  One step forwards two back springs to mind right now.    


Izzy found this lovely small stone on the park the other day.  On the back was a few words to say to log onto Facebook and show your stone or rock on a website and then put it somewhere else to see how far your rock travels. Needless to say we are now looking for suitable pebbles or rocks for her to decorate and see how far they go.  I saw one pebble left Huddersfield and ended up in New York so some kind soul obviously travelled with it and placed it to be find across the waters.  I am quite looking forward to finding out the journey of the stones when we get around to doing them. 

We cannot wait until this house is done.  We do not have any free time to go away on holiday as days are spent with Colin running backwards and forwards between the new house and this apartment.  I think he is too meticulous and there is only one decorator he can trust and he is on holiday. He likes his painting to be done "right" .  The preparation takes quite a while before any real painting begins.  Though he tells me that is the most important part and I know that is true.  If it was left up to me it would be a more slap dash affair.  So we wait, whilst all this good weather passes us by. I envy those living at the coast as you will get the breeze we do not here and it is baking.  

So away I go again, a few bits of news but nothing exciting.  Can't wait for the day we get off and do more enjoyable things, it will happen.  To  be honest the first thing i am really looking forward to, and it sounds daft, is the very first time Izzy opens her gate and walks up the path to her second home, ours.  After all it is what this has all been about.  

Please if you can click like or comment so I know I still have you in my corner!  I am aware I do no write as often but can only write when I have at least some small thing to write about.

Warm love to all [ and my it is warm in the UK right now and fires burning strongly on Saddleworth Moor in Lancashire. the place where the evil Brady and Hindley buried their victims bodies.  } It would be wonderful if because of this the burial place of the last body came to light and he could be laid to rest in a friendlier place.  

Carole xxx

By the way the toe is doing OK ish  Strapped and painful but not as bad as it was.  Happy to feel it begin to heal.  Thank you all for your suggestions and your concerns.  

Sunday, 10 June 2018


Anna Caroline Bowen and Hickman Line

It was such a lovely post to see last week after  tests  showed that thanks to her hickman line and the iloprost she was receiving through it her pressures reduced so that instead of the level 4 when diagnosed she is now at level 2!!!!!!!  I wanted to write this so that those facing the trauma of the line can see the generally,,no I can't say for everyone but generally the improvement is really good.  I myself was on the line at level 4 and came off it at level 2 after 12 months, plus the transition over to oral meds.  

I do think that sometimes the thought of the line scares people away from it and I really get that but when we see posts such as these it can make others see that they can have a better life if they trust the specialists.  Once on it  then of course the hope is that the meds, delivered every two minutes close to the heart can have such an amazing effect. Neither Anna nor I can say it is all plain sailing but then it is not with any of the meds cos at the end of the day we do have ph.  I still believe that our specialist doctors know best for us and we should heed their advice as Anna did.  So go well Anna.  She says she feels so much better in herself and can do more so what a result.  As a mom of three, two still at home what a blessing.  Of course she will still have her ph days, who of us can say she will not but the results are in, her pressures are lowered so I am so happy for her and her family.  

Anna says she would be happy to speak to anyone with young children as that seems to be an issue with them and the worry of the line.  If you want to talk to her you can get her on Facebook.  I have said here before that Izzy spent her first fifteen months of life with me having the line in, though for three months it was a line only and no pump!  She used to twirl her fingers through the line, I never had a mishap with her playing with it but  it did transpire on removal that it had been sewn in so tightly it was hard to cut out.   

Anna still has hers so is more up to date with any news about it.  Please please do not hesitate to contact her.  She really wants to help people regarding ph so in actual fact it would make her happy to help you if you are trying to decide whether to go for the line or not, or indeed problems that might occur with the hickman line.  

My Mom

I can't stop thinking about my mom these days and I am wondering if what I said caused her death earlier than it should be.  My mom had dementia, not too bad but there it was.  She was taken into hospital as she really was not well.  She would not eat, she said everything tasted too sweet.  This came from somebody who always had a sweet tooth.  She was so small, so fragile.  I would make her fresh soup each day and take it to her but she said even that was sweet!

We all visited her so she was never short of visitors and we laughed a lot about the things we did as a family when we were younger.  I remember her sitting up in bed saying didn't we have a lot of fun when we were all together".  Though she had previously told her neighbour she had had enough she wanted to die she was really happy in the hospital, surrounded by all her family.

We knew the end could not be too far away.  They talked to us about palliative care, we are not stupid people so we knew what to expect but I think I brought it on sooner and I feel such guilt.  She told me one morning that her foot was very painful.  We could see no reason for it but I asked mom if she wanted to have some painkillers, I was thinking paracetamol etc.  She said yes so away the nurse went to write it down and to get a doctor to agree to it.  Unbeknown to me then they began to give her morphine!  I would not have agreed had I known that.  When I next went to see my mom the following afternoon she was not herself at all acting drugged up, as indeed she was.  Her memory was not good and her speech blurred.  

Shortly after this she was moved into a side room and she deteriorated quickly.  I remember standing with two of my brothers when they wheeled her past us for a shower and she was slumped over in the chair.  I cried and asked if it was wrong to wish for her to die.  meant it in a kindly way, I did not mean I wished her dead were she ok but it was obvious our mom was no coming back to us.  In days she got worse, she just slept.  We all continued to visit to talk to her but in the end the inevitable happened and she died.  Now  feel such guilt.  Had I not asked for an pain meds I truly believe she would have lived a few weeks longer.  I feel  I denied all the family more time with her and I must admit it haunts me,  There is nothing I can do, no going back but the guilt is with me and always will be, sorry mom.  

Feeling pretty good regarding my lungs   

I am trying to come off my gabapentin that was prescribed at the height of my neuropathy when trialling DCA.  I am now on a low dose but it does not help my sleeping at all.  I am regularly awake in the wee small hours of the night and of course our minds go into overdrive.  I keep thinking about  the new house!  Regarding my ph though things are pretty good.  I know my breathing is so much better since my denervation and seems to continue to get better even more so since my last test in January. after the procedure.  I am blowing almost 500 on my peak flow monitor which is pretty good.  I must also confess here that I am taking special note with my sildenifil and ventolin.  In particular with the ventalin i make sure that with each puff I draw it deep into my mouth for the recommended 10 seconds in order for the dose to reach into my lungs as far as it can.  I certainly do feel the benefit of doing this as before I was performing this task very perfunctory and know I did not do the ten seconds advised by my specialist.  Once again it is a case of our specialists can do so much but we must do the rest ourselves so I am taking all their advice seriously. 

I am aware that I was blessed to be given the opportunity to have the denervation and want to do all in my power to show that it was deserved.  It is doubtful now that I will be in a position to trial now as my pressures are pretty good so I will miss that.  I loved taking the meds in the hope that this one was the cure for us all, that the breakthrough had arrived!  I do love hearing about the trials that others are on so please keep us all up to date with how you are doing.  

My spondylitis is still giving me a lot of pain but not as much as at first.  I can at least type so that has to be better.  I am hoping for an appointment at my pain clinic.  Indeed we received a message yesterday advising of an appointment at our local hospital for next Friday but as the pair of us are both waiting for appointments for various things we do not know which appointment it is.  We hope to receive a letter on Monday telling us this or failing that we shall have to do some sleuthing.  If it is me then I really should come off my warfarin five days before so just in case I will stop taking it until we know.  

The house

Well this moves on now at a fast pace I am happy to say.  We have builders, joiners, plasterers etc crawling all over the place.  One result is that when the digger was in digging out for the paths etc we saw this as an opportunity to go in and pull out all the bushes that had been in what was termed by the previous owners as the Secret Garden.  None of the foliage in it would have worked with our terrace and he thought of digging up all those roots was just too much.  In ten minutes he went in and lifted them out and then pulled all the earth we needed shifting into situ.  Well pleased with this.  

We are almost at the end of ordering all things needed now by the builders and fitters  Just the smaller things to think about such as lights etc.  We did worry such a lot over the internal doors and have changed our minds again and gone for something so far away from our normal but feel that with this house they will work very well.  The granite we chose for our kitchen we actually saw in situ last week on a display kitchen and HATED it!  Fortunately we have been able to ring up and sort this out.  Monday we will go over and choose a different one.   So relieved we saw it like this as we would have found it to difficult to live with once competed.  The kitchen was to be delivered next week much to our horror but fortunately there was a mix up in Germany between them and the delivery company so now will be delivered to another address in Manchester.  When we are ready it will be delivered to our new house.  

There is not a lot we can do there right now so we intend to work out how best to fit out wardrobe which is very big so we have a lot of scope to deal with it on that front.  Here is a picture from the dining room window, excuse all the builders mess but the views are stunning so we can't wait to get in.


So proud of this little girl who is doing so well at her piano lessons that her parents have decided to send her for some private ones.  How I hope this is a talent that grows with her and not a flash in the pan, would love to play the piano myself.   She had a fall three weeks ago after her swimming lesson and though grandad brushed all the dirt off her as soon as he could and her mommy washed her well when she was home she still must have had some dirt hidden deep in her thumb,  This caused her a lot of pain and though it was bathed often in TCP  it continued to be a problem.  It is beginning to get better after being given two lots of meds by the doctors which is a relief to me as i know sepsis can enter the body by something like this.  She gets excited whenever she sees changes to the house and is looking forward to her bedroom being decorated. 

I am so sorry for not  being  around for some time but I know you understand how it is.  Pain is an evil thing and I just found it hard to cope with it. Thank you so much for not abandoning me, I had so many messages, both private and public and also long telephone calls, it was very kind of you to continue to ask how I was feeling.

I send warm love to you all and once again hope you are all doing as well as can be.  The weather is glorious here so I am going to take a shower and go and sit in the park. 

Carole xxx