My "get up and go " just got up and gone!!!!

Hi everyone, so sorry for worrying some of you.  I received a few private messages saying I had not been on for a while and was I ok.  First let me assure you that I did all my work for the admin side of the Pulmonary Hypertension Society.  I would do this in the night when I often awake.  The people wishing to join must have a response a.s.a.p. we feel so I do that without fail every day.  If I am not going to be able I tell Paul and he knows.  Paul too informs me if he is going to be away and between us we always have it covered.

It has been a funny week this week, rather stressful too and I must confess it all seemed to be a bit much, not my Facebook friends but life in general.  My legs have been wobbly, how I hate this side of ph and I still have three weeks and more until I get my 24 hour heart monitor.  I keep reading about how exercise is good for us and of course I do know that it is, heck I began walking with ph and could cover 11 miles from time to time.  Not now though and this saddens me as I had formed a walking group for the less able bodied and for the time being it has been shelved.  I am truly hoping we can begin again when my meds have been adjusted, or I get back on the line.  

My most stressful time began when Roy had his fall, I mentioned this in my last blog.  Things went downhill fast after that.  As you also know the following day saw us at the hospital with Izzy and her very badly cut lip.  Any of us hate to see our little ones hurt and the stress it caused me was to send me spiralling down the abyss of ph.  

I managed to go for a coffee with Roy on the Saturday and I could see he was visibly worse in his condition, he could barely hold himself up so I insisted we headed off home and helped him to bed.  Rather a case of the blind leading the blind as I could not wait to get to my bed either.  Colin was away with the motor home so I had nobody I could call on to help should I need it but I fortunately did not. Of course I have friends but we know how we are,  we hate asking for help.  It is great when we have the push our partners give us to get up and start the day.  I love it when I have a real reason to move my body but there was none other than to check out my bosses house as they were away. I love doing this, being a part of this family and this house for so many years it always feel like coming home  The gardens were gorgeous and the weather lovely so I checked all was well and walked around enjoying nature at its best.  so I was very very lazy.  

On the Sunday after church and checking my bosses house again I just went straight home.  As I had not been well at all over the last few weeks I had sadly declined an invitation to Archies christening.  I just didn't want to accept an invitation I may not be up to using on the day.  This was a real  sadness but I was so frightened that at his christening I had a "do" or went  "off"  so I decided the best option was to decline.  So it was that there was nothing that needed to be done so it was an easy option, being lazy on a Sunday afternoon!!  I did think about Archie and all the people I would love to have seen so  think perhaps  I was a little depressed too for not being with them all. 

 The phone rang at 5.00 and I answered it to hear Sue, Roy's  daughter asking if I could go up and give her some advice about Roy, her dad.  Of course I headed straight up.  The place was a mess.  He had such bad diarrhoea and Sue said she had been constantly cleaning it up.  I was concerned as I knew he had not had any antibiotics after his terribly bad fall and was worried about an infection.  We called the out of hours doctor and was told he would get back to us in two hours though in truth it  was almost four hours before one came,  The doctor was very nice and quickly assessed the situation and said he needed hospital care so an ambulance was sent for,  This arrived very swiftly but it took some time to stabilise Roy (in fact all wasn't stabilised despite all their efforts) and they decided they needed to just move on it)  His blood sugar was ver very low and not even two tubes of high glucose could bring it up.  He was severely dehydrated too and they, as indeed I feared for the worst.

A long night in the A & E before a bed was found and after an examination the doctor told the family that there was little hope.  He was an 87 year old man whose kidneys and heart were shutting down.  I know we can say he had a good innings but it was so sad and bought home to me all about both my mother and fathers death so starkly that I sort of went into melt down.  He was put on massive doses of infused antibiotics and drips to deal with his dehydration but the toxins in his body were massive.  The family were told that the next 48 hours would be critical.  Well that marker came and went and I would see a rise and fall in his condition.  Yesterday I talked to him whilst they took blood from his wrist, we know how painful this is as the needle goes straight into the main artery.  He was so busy taking he didn't notice it so I was pleased about that.  

The family were told again that there was very little time left now so of course  I came home and left them with Roy only to be rung a few hours later by his grandaughter with the jubilant news that the blood tests showed that he was fighting the kidney problem and things were looking up.  Indeed the Doctor said Roy would be drinking champagne in his home in Menorca later in the year.  My mood immediately lifted. 

Of course though I love Roy dearly nobody can take the place of your parents and the gloom I felt and the very real loss of mine was just so much to the forefront in all of this, it was like I was grieving for them both and my brother all over again.  The news that Roy may make it after all helped to lift my mood a little.   

  Then the best thing happened, the door bust open and there was the sunshine in the shape of my Izzy.  She was staying the night due to her mom supporting her boyfriend at the funeral of his grandad.  She lights up my life with her lovely manner and loving ways.  We had a talk and cuddles and she built lego with grandad, read a book with me, ate her meal, had a bath and bed.  My gloom was lifted, I felt revived again!  

Now I am sitting here looking out of the study widow at the snow coming down so thick I can barely believe it.  I shall go to visit Roy again shortly and hope to see him looking a little better.

My next blog will be more in my usual style but I just wanted you to know I hadn't been poorly, had not gone away on holiday but was in the abyss we all sometimes visit when we have ph!  I am due back at Sheffield for my next infusion of the study ferritin in June and then we go off on our cruise.  I truly am so looking forward to that as I just love cruising.  Never in my wildest thoughts would I have ever believed I would be saying this.  I thought they would not be for me, full of boring people who sat and sipped cocktails all day but no, none of it, we have fun on the cruises and I love that there is a taster for further trips in the ports we call at.  So for somebody who said no no never when cruises were mentioned I have been on around 15 now!  Roll on..

All for now, the hospital visiting calls but trust me I am back and feeling better in myself, just wish the wobbly legs would go away. 

Love to all and thanks for the private messages and the liking and sharing of my blog.  

Carole xx

DO NOT RESUSCITATE

How many times have we been asked this question when the doctors are taking our notes at the beginning of a consultation.  I know the first time I was ever asked this question, never before I got ipah, I was amazed to be asked and said well  YES I want you to try.  It made me wonder since I have had a few "episodes" if I felt the same way and would I answer the same.  My answer would still be yes please, do try.  I feel I have so much living still to do. So many memories to make that I will be able to leave behind for my family and friends.  

Once when I was in hospital a lady was in the bed opposite me and she was wearing a constant oxygen mask and her breathing was so terrible.  I overheard her being asked the question and her answer was no, do not attempt to bring me round,  She had a lovely family that would come in and paint her toe nails and do her hair.  She was younger than me.  One day I asked her why she had said no to the question and her answer was that there would be no point.  I often think about her and wonder if she is still with us, I doubt it though as I know how ill she was.  

I know how bad we can feel, I know I myself have at times gone to bed and told Colin I hope I don't wake up in the morning but then I wake and the day is different, I can do things, I can move my body, I can dress myself and get motivated. I also know too well how this can change.  I know there may come a time when I need more help, more hospital stays and the medicines will no longer work as can be the case.  That may be the time when I am asked THE question that I will say no, please don't even attempt to being me round.  For now though the answer is a definite YES, please do all you can, I want to live. I wonder how my other ph family answered the question.

How very true

Most of us with a chronic illness get asked the most stupid questions or get told how we can cure it.  Wishful thinking we can't.....yet, but here is a brilliant post.  Not sure who posted originally but thank you and many thanks to George Gaskin whose page I found it on.  Now George is our "resident" clown and I love to talk to him and when I saw he had posted this I just knew I really must share as it is so true and down to earth.  Just love it.  I bet George has been asked or told these things many a time as though terribly poorly with this disease it doesn't stop him living life to the full and having fun.  Some people will just assume there is not much wrong with him or tell him of the "cure".  

Please please if you don't open any other link open this one, the woman who does it is quite funny in her actions, brilliantly done: -

https://youtu.be/hlRD9loRV7w

Monday morning

I was going to ring my local doctor at 8.00 to see him about a minor problem but to also see if he has had news of my need for a 24 hour monitor.  This wasn't to be as the morning took a very different turn.

Woke early and decided to go up and give my neighbour Roy his complan.  On setting it down on his trolley, {the one it took us one and a half hours to find)  I noted a load of bloody tissues on the trolley and on the floor.  Thinking he had a bad nose bleed I decided to look further and saw his arms.  Oh my word, not a slight gash here but almost all of his right hand from the middle of his wrist to his elbows totally open around three inches wide and on his left a huge open wound. I woke him and checked further and saw how serious this was.  I knew that there was  certainly nothing I could do for this.  He needed proper treatment so I told him to dress immediately, not drink, (just in case) and then got myself dressed.

Colin understood but was a bit upset as he worried about me and he knew I was running on adrenalin and would pay the price but what could I do, I knew Roy should have gone to the hospital sooner.  Colin had an important date with sand and cement and a sewer at my daughters so there was nothing he could do. The story with Roy is that he slipped off his bed and banged himself on the trolley going down.  Now this happened at 11.15 at night so he didn't wish to bother us!  Sadly he did himself a lot of harm as by the time we reached A and E the wound could not be put back, I mean the skin could not be brought together.  After a good clean and many many sterastrips and plenty of padding a bandage was put on both arms.  Now his instructions are to not get them wet.  He was told they will take weeks, even months to heal as his skin is like tissue paper and he has very little flesh underneath.  He is also sporting the most enormous bruise on his jaw where he hit the trolley also, how fortunate he did not break it,  the jaw I mean! Now he has to have a district nurse come in to change the dressings.  His dream of going to his other house in Menorca has gone for the time being so guess what we will be doing next ...........

New Kitchen

He has decided to change all his kitchen and maybe build some sort of wall to separate it from his absolutely enormous lounge.  I so agree and as we had an agreement that if he dies before me we shall buy the property he wants us two to get involved with the designers!  This should be very exciting.  We however won't be buying this property as I so long for a garden but I shan't tell him this.  I am to get two designers up and we shall talk over all that the three of us need in this oh so super kitchen he will have, can't wait and it keeps his mind off going back to Menorca, where to be honest he is really not well enough to take care of himself.  I must say here though that the thought of Roy not being in the world is too awful to contemplate so I pray we are helping with the plans for a kitchen he will enjoy for many years to come. As I spend quite a lot of time with Roy I do appreciate the needs he has with regard to the kitchen so I can be of some help to get one that works for him.

Here she is  My Lady

I have brought her home, she is fired and now finished!  I don't think considering it is my first attempt that I did too bad a job.  Colin and Mike when they saw it both asked if I had had help.  My answer was an emphatic NO, Helen directs but she will not make it or interfere in any way.  I know that there are many imperfections but it doesn't matter, I made her!!!!

Now I have bowls and a plaque to paint and fire and then I shall ask if  can make another as I have learnt valuable lessons and know where I went wrong on this one, would love to have another attempt.

What do you think now Tony?

Fruit for kids

Once again many thanks to the person that posted this.  How brilliant and how easy.  I have begun a campaign with Sainsbury's to do just this.  I have sent out two e mails to two different addresses and am now waiting for a response.  I tire of seeing babies as young as around eight months old going around in the trolleys with their parents chomping on a do nut. {the child I mean not the parent}  Lets start healthy eating early and leave behind the cakes and biscuits.  Perhaps also if this happens instead of collecting a trolley that has the left over packet from a bag of crisps a child has just eaten that its parent left carelessly in the trolley for the likes of us to pick up before we can use it we shall see instead half eaten apples and banana skins.  Then we shall do what we always dutifully do, pick out the rubbish left by the person before us and discard it in the appropriate bin, which by the way is right by the trolley park and bin it. The worst thing I saw was last week, a dirty nappy and no I didn't pick it out and bin it, I left it and found another trolley.

Was I wong, I don't think so

I got a bit of stick this afternoon from the family of Roy for not ringing them when I first saw Roy.  In all honesty I answered that I didn't stop to think, I was in shock.  My first instinct was to get him the help he needed NOW and so off we went to my local A and E.  I also never thought when we were being sorted out. Roy was in shock, I was very concerned and anyway phones cannot be used in this department so had I thought it there was nothing I could do, I was not leaving him to make a call.  When all was done and we were driving home I asked him he wanted me to call Mathew, his answer was no, I want to go to sleep and Mathew will be here in a couple of hours anyway. So I did what I was told, got him to bed and as safe as he could be with a drink and I know he slept.  

I understand why the family were upset but I did what I did for Roy and at the end it was his decision not to let his family know then.  However I explained all that happened and why I didn't ring and at the end Mathew understood and we were friends again!   I am certainly not trying to interfere with the relationship between them all, I just wanted to do the best I could for Roy in the circumstances.

Well another day is dawning.  Today I SHALL ring my doctor and I shall also go for my LFT and INR, so much excitement ahead! 

Hope the day goes well for you all.

Once again thank you for reading and a HUGE thank you for the likes.

Carole xxxxxx

Sometimes it all gets too much

In all honesty it has not been the best week.  Standing for any length of time just isn't for me right now, the fear of fainting looms large.  I feel safe in my chair though so spend too much time just sitting,  all I want now is the knitting needles and yarn.   I won't let it beat me though, I know between my A Team and Colin and me we can beat this, I know we will find the answer and change/adjust accordingly.  The problem now is how long it will take to get the 24 hour monitor.  I am heading for the doctors tomorrow morning so I shall ask if they have received the letter from Sheffield (I received mine) and if they are moving on the request for the said monitor. We shall see.

The pain management meeting was just brilliant.  I didn't expect anything could be done for my neck as I had been told this by two different specialists as the operation I need requires anaesthetic so just accepted this and hoped he could tell me some exercises to help when my neck goes into spasms.  How wrong was I.  A brilliant doctor saw me and he is an anaesthetist really so why he was taking the clinic I have no idea but am pleased he was.  He got up all my x rays and MRIs  and was shocked  when he saw just how much "real lung" is left now, not that much I can tell you.  He was also very shocked at just how much I can do, well generally, just a blip at the moment.  He looked at my neck MRI and said he could inject it with something that hopefully will take away much of the pain.  He understands I can't take medicines containing opiates and feels this would be the best way for me.  I left almost in tears at the thought of cutting out a lot of the pain and a prescription for the heparin he wishes me to have five days before the procedure.  I will have to wait three or four months.  Pity it couldn't be sooner as it would be great to have this over and done with before we go on holiday but I can't complain.  I would ask for a cancellation as we live around the corner but of course I need to get my INR down to 1 before he will touch my neck so that doesn't work either.   This is something to be looking forward to so a great result. Severe spondalitus of the neck is certainly no joke. 

Colonoscopy  I have these yearly as I am what is known as a polyps farmer.  Sadly they always find a lot and most of the are of the type that MAY turn cancerous later so better removed than giving them a chance to grow,  I have no problems at all with the procedure, don't take any form of sedation and have a giggle with the staff in the room.  This time they didn't quite beat my last score of 9 having to leave it at 8 this year.  The problems I had with the whole things was having to go 32 hours with NO FOOD.  I take many medicines to try to control my ph and what with all these rattling around in me and no food to help to absorb anything by the time I was on the table I just wanted to eat a huge steak or a massive chicken.  I received my two slices of toast and milk after the procedure and very grateful I was for it too.  Home then to my bed I and I was certainly ready for it at this time.   

Drains and pesky waste pipes, ugh!!!!!!

Danielle had been having trouble with her drains and sewage actually spewing out so she rightly got in touch with an expert who after lots of taking of videos and rodding etc declared the drain had collapsed.  On then to the insurance company as she is insured for such an emergency.  One would have thought the insurance company would get on with it rather swiftly due to it being a health hazard but no, they needed to send their own guy to look and it would take around five days before he could do it.  We were all dreaming of the scenario of yet another five days with no drainage when it was decided Danielle and Izzy would move over to her boyfriends Chris's house.  The insurance company went in to the drains though an entirely different entrance and declared that the reason it was blocked is that they could see concrete down the drain.  Rubbish but non the less it necessitated Colin and Dave a builder both working hard on Saturday digging up the top of the drive and seeing just where this supposed concrete was.  There wasn't any and the blockage is further down the drain where we had been told before.  Colin and Dave put a new manhole cover in to make access easier for the insurance company and now they need to come back to look again.  

Whilst all this was going on I was sitting or laying in the room and getting to know the delightful Harrison a little better.  They had all to come back to Danielle's and beggar the drains as Danielle was working and Chris lives too far away to just jump in the car when needed re all this fiasco.  It was lovely then to be with Izzy, without her beloved grandad, as he was busy outside, so it meant I got a look in.  Harrison is a very lovely little three year old and by the end of the day he was actually sitting next to me with his head on my shoulder while Izzy was on the other and we were trying to solve a puzzle.   A delightful day was had by us all inside the house as I was getting the children to try to walk with books on their heads and play football with small balls and getting them caught in the bottom of the couch meant a goal and oh all sorts of silly things.  For me the day was brilliant.  Not so much for Colin who had worked all day and was absolutely filthy.  It is not everyone who can do this type of job but he just gets stuck in.  Home then for a lovely long soak for him then and a much needed rest before he begins work on it again on Monday putting back all the top of the drive!

Away days again

Colin is hoping to go away again next Thursday in the motor home.  I prefer to stay here and that gives him all the time he needs to take his photographs, walk and bike etc without worrying about getting back to the motor home for me.  My sister kindly said I could go and stay with her whilst he is gone.  Now she lives in a beautiful cottage in the delightful village of Heptonstall, the scene of many tv dramas etc.  I have to say no though as she has stairs, stairs and I have been alien to each other for many a year so no, thank you for the kind offer Gill but here I shall stay, surrounded by good friends, near my local hospital and less than two hours away for Colin to drive home should an emergency occur.

How pulmonary hypertension develops

For my ph friends this may be of interest or if not show it to your friends and family to give them some understanding about ph.  Just click on the link.

http://l.facebook.com/l.php?u=http%3A%2F%2Fpulmonaryhypertensionnews.com%2F2015%2F12%2F18%2Fpulmonary-hypertension-develops%2F&h=dAQGhraj-&s=1  

I shall finish now as Danielle and Chris along with the children are in the park opposite and about to come back here for a short while.  So looking forward to seeing them all again, a lovely family the four of them make. I feel blessed. 

Once again thank you for taking the time to read and for taking the time to click like or sharing.

Much love to each and every one of you

Carole xxxxxxxx

Oops - here I go again

Last week was the week from hell. After my time spent at my local hospital and the uti I honestly believed things would get better.  Not so as we were soon to find out.  Colin and I decided on a very short flat walk on our canal tow path to see how my ph behaved.  It did not, it let me down so badly.  Colin had to half carry me into a pub that was close by as my legs did not want to work and my heart tried to claw itself out of my chest wall.  Feeling very sick and very scared Colin brought the car to the door and got me home.  A ring to my specialist clinic ended up with me being told to go in and have some tests, so here we were again.

There was no clinic on as such so I did my usual walk test, ecg and bloods, and pressures.  Typical they all came back as normal "for me".  We were so frustrated as we wanted me to go "off" again so we could maybe get to the bottom of it.  Robin, my lovely specialist doctor took us into his "other" office, his working one.  Well we had to smile.  As he was walking us round to it it told us that he doesn't allow people into this office but he knew we would not object.  There were clothes everywhere, his cycling gear, papers strewn all around and files.  We could just imagine how his wife has to pick up after him, it was so sweet though that he knew us well enough to allow us into this private domain of his.  

As Robin was doing my heart pressure etc we had our usual banter.  He is so funny and so lovely.  At one stage when the tests showed nothing I said maybe I should go and live with him for a while, he smiled and said he would ok it with his wife.  Anyway the end result is that as there is nothing obvious to see that has changed he wants me to have a 24 hour monitor.  We agreed and now it is up to the doctor to sort this with my local hospital.  Colin and I have decided we shall do the very short walk again and actually hope the same thing happens, two really bad turns in a week is getting very scary.  

Why do I believe all this is happening.  I believe my pressures have risen.  We know our own bodies and I know the feeling I am getting are like the ones I have when this happens.  When I told a friend she asked how they could tell and when I mentioned right heart catheters she said why didn't they just do one then.  The problem is the tube going down into our lungs goes in through the jugular vein.  We do not want too much scarring of this vital vein so they are only done when the need is really called for.  However if nothing shows on the 24 hour monitor I feel that will be the next step.  So here I am, doing very little which so annoys me but I have a life to lead and so I certainly will not allow this to stop me from enjoying it.

The Mill

How many of you watched this series on the television.  It was all about life in the cotton mills and my friend Sue Reid wrote a book called Mill Girl and did some of her research for it here. As we are members of the National Trust we decided on Sunday to get out and about and chose this place to go. It is only thirty minutes from where we live.  The filming for The Mill was done here and what a fascinating place it is. Quarry Bank Mill is in Styal, Cheshire and is one of the best preserved textile mills of the Industrial Revolution.  It is now a museum  and a fascinating one at that. 

The mill still has the water wheel working and many many of the machines are now being used to show people what life was like in these mills.  I myself worked in one for a short time, though I was in the office.  I well remember having to go into the mill itself and the noise of the clattering machines and all the cotton dust flying around, certainly not good for lungs.  

This mill has plenty of history.  It was attacked in 1842 during the Plug Plot riots but it withstood all of this and stands proud today.   It is set in the valley on the banks of the River Bolin which provides water to power the waterwheels and was in a great position for the transporting of raw cotton from Liverpool.

Samuel Greg was left £30.000 pounds when his uncle died.  He decided to make cotton as most of ours came from abroad and he knew it would be a great business.  The building of the mill cost him £11.000 and the equipping of it cost him a further £15.000   

I could talk all day about this place, so amazing it is but I will tell just a little about the life of a child working here.  The children, around two thirds of them girls, were generally, though not always taken from the workhouses.  They were not taken from local workhouses though as it was felt they would run away back to their mothers so a great distance between them was preferred.  Girls were preferred more than boys as they believed boys to be truculent and troublesome!  

I went into the Apprentice house to see just what living conditions were like here.  We were shown into the school room where they received lessons after work for around two hours.  The subjects taught were the two r's.  Here the children were not allowed to be smacked at all, or in the mill.  Their punishment could be standing in a corner for 30 minutes holding a pair of dumb bells at arms length or having their hair cut off.  The hair was very precious to the girls and very well taken care of so such  a punishment was great.

The girls slept in a dormitory that held 60 girls.  They slept two to a bed and of course there were no toilets, just potties.  In the days of this mill being in operation the left and right hand distinction was made clear.  You used your right hand for eating food, etc and the left was used for dirty work, such as wiping your bum!  Straw was used for this and there was a big basket of straw in the room.  The only form of water for washing was the pump outside in the yard. However Samuel Greg was a clever and astute man, he knew that to keep the children in the best condition produced the best work.  He therefore had a doctor on site to care for any ailaments, indeed this doctor actually was one of the first to inoculate the children with the small pox jab after one of the children in the mill died from it.  Now it may well have been that he used the children as guinea pigs as the inoculations were far from tested to the full but no child died from small pox in the mill after that.  

Breakfast consisted of porridge, not gruel which is oats made with water.  no these children needed strength to do their jobs and their porridge was made with milk. Mixed to a very very thick consistency it looked awful  The children went to work and began whichever tasks were theirs and at 8.00 the breakfast was served.  It was made so thick as they had no plates or utensils.  The dollops of the stuff were dropped into the hands of these little mites and that was that. They were encouraged to eat as much as they liked though, not for them the tale  of Oliver asking for more.  Full bellies meant more work hence more fuel.  Lunch was the same except that this time there were vegetables chopped up  and mixed with these oats.  Dinner was a proper meal, most likely a stew but with meat and many veg.

So much did Samuel want his workforce to eat veg that when he later built a village for his workforce he made sure that they all had a garden that were to be used as an allotment to grow fruit and veg.

Children that ran away from here were fined.  Of course there was no money at all for these children till they reached the age of 18 but then they did receive a small wage and overtime.  Girls that ran away when returned were faced with their hair being cut off.  One boy who lost his finger and ran back to his mom said on being caught that he had no real reason to run away except he missed his mom.  He said the food was plentiful and there were no beatings as there were in other mills.  

I can't say more or you would be so fed up and just pass this by but read if you like it the articles on the web.  I was on my mobility scooter and the guy that showed us around the house was so lovely he always made sure there was a chair set aside for me.  On leaving the house after thanking the narrator very profusely he asked if I had seen the two television shows of the mill with Tony Robinson.  As you may well know Tony is well known for his "digs" and archeology so I told him no unfortunately.  He then said he would send me a copy.  How kind is that.  

On then to my trusty mobility scooter and home, very tired but so pleased we made the effort.  

Candice Pridden

I owe this girl a huge thank you.  The sister of our very own Stacie, Candice went on a diet and is doing so well.  She posts foods allowed, meals etc and to say they look and taste great is no joke.  Now I am not overweight, being with what is normal for me but non the less my clothes were beginning to feel a little tight on me.  As hopefully there is a cruise in the offing I decided to diet.  not being at my best at nights though when slimming world club is on here I decided to "plug into" Candice and she happily allowed me to do this.  Early days being just over a week, ten days to be precise but I have lost three pounds.  I want to lose another seven before I go away which is why I posted on here.  With you all seeing and watching my progress it will push me more to behaving myself, no cheating.

Ceramics again.

Right back to work with a vengeance after the holidays.  I was presented with three things to paint, the head, a plaque and a bowl.  As others were painting heads it seemed to be the best idea to do this as we could swap paints and brushes around.  I like mine, though I wish I could have done her hair a different colour.  However I promised Izzy she would have blonde hair but I have put a few other colours in so she is a bit over the top!  This is fine though as she is supposed to be a caricature anyway so any colour of hair would do.  I was worried about going to class as it is in the afternoon , this is not my good time but it went well and I finished her early and then came home.  I knew I didn't have time to paint any of the other pieces.

Cake decorating and Izzy

I bought a cake for Colin so he could give a piece to Izzy and her mom and Chris when they arrived with his card and gifts for his birthday.  I found one that you decorate yourself so I also bought all the gels etc.  Izzy was so excited when she arrived and I told her to hurry and wash her hands as she had a cake to decorate.  She said she hadn't known she would be doing this but set about it with gusto.  The result was a huge heart in the middle surrounded by different coloured circles and all the candles in the box!  she was so pleased and helped grandad blow them out.

Danielle told us that two days after arriving home from her holiday with grandad she began to cry.  When asked why she was crying she said it was because she missed her grandad!  How sweet.  Colin will be taking her away in the summer.

Panto booked, Peter Pan this year and there will be two more going.  This will be the very first panto for Harrison,  the son of Chris.  Izzy has promised to explain to him about how everyone shouts and to take care of him!  He has just gone three so a great time to start him going to these yearly treats.   Front seats of the circle go very quickly so we were pleased to get them as we booked so early. Though it seems a long time  until Christmas we know how time flies.

Heart warming tale to finish on.  I just loved this! - Follow the Link below: -

https://youtu.be/w_BLSHl3EXU

Not too bad a day here so we shall see what we get up to.  Hope you all have a good day, we must all live life to the full.

Tons of love to you all and thanks again for reading and please like the page when you have read it for me. Sometimes I only get three likes though I know over 100 people read the blogs, it would be super to have more likes!

Carole xxx

Feeling humbled by my Facebook friends

I was overwhelmed last week as to the response  received from all my Facebook friends.  I was feeling terribly ill and was indeed in a lot of trouble when I posted and could hardly believe my eyes when I saw all the messages of support coming up on my thread.  I expected maybe ten or twelve but there were over 100 responses.  What was also so humbling was that when I didn't get back to say how I had got on at the doctors I saw later that people had posted that they were worried as I had not updated what was happening.  It was so nice to think that so many people on my Facebook page cared enough to bother to write these messages, thank you one and all. The reason I didn't get back was that my doctors appointment ran into a hospital appointment and took up so many hours.  Fortunately for me the doctor at my hospital decided not to keep me in as he did not understand the condition.  His thoughts were that my ph meds needed to be changed!  How easy this sounds, not so simple to do.  My pressures were at one stage 192/164 with a heart rate of 122, with a heart rate so high no wonder I almost fainted.  I know for many ph patients this would be the norm, these pressures but they were not for me, hence the feeling very scared. 

Thank goodness he did not keep me in as if I stay overnight in a hospital my insurance for our soon to be on cruise becomes obsolete.  Yes we would get most of the money back we have paid for the cruise but our holiday seeing St Petersburgh would be gone.  I am doing my best to stay away from  overnight visits then.  My stay in the hotel when on the study does not count as I am being monitored and it is not a medical emergency thank goodness.

We have still not got to the bottom of this problem BUT it just could be that something bad was heading my way in the form of yet another UTI.  Quite how these infections can bring on the overwhelming feeling of being so poorly and being so sure I would faint I don't know but I accept this can happen. A six and a half hour wait at the hospital where I was sent to by my doctor resulted in no answers.  My local doctor was so shocked when my friend helped me into his surgery.  My face was the colour of beetroot and my eyes were just slits in my head.  He said he was used to seeing me bounding into his surgery.  A trip to the hospital with a possible overnight stay was called for he said so off we trotted, actually I was held up as my legs would not hold me up. Off we headed to the Ambulatory ward at my local hospital.

My bloods were taken after four hours and I was then told I had to wait to see a senior doctor as they had never heard of IPAH.  How often have we heard this.  Another two hours went by and by this time  I was so badly slumped in my chair even the sister in charge of the ward was concerned and helped me to a bed in another room.  The said doctor rolled in to see me.  If this was a senior doctor then there is much truth in the saying  that when your doctor looks young you are old.  I swear he looked to be around 21!  My pressures were taken and as these were now within the normal range I was allowed home. He said I must arrange to see my own specialist as he had no idea what he was looking for. Still having to be helped to walk by my friend it was home to bed and a good lie down.

Colin was away in the motor home with our grandaughter Izzy so I was adamant that I didn't want them to be disturbed.  This was a much longed for trip and I knew that with the help of my friends I would get by.  Sure enough I was visited three times a day and the phone never stopped ringing with offers of help. Friends from close by offered me help too, how amazed I was at just how many people were prepared to help take care of me.

I rang Sheffield, my hospital as instructed.  I dare not do any other as Marcmary Dyer said she would hound me until I did.  She said that there had to be something wrong for me to call for help as I was usually hard as nails.  Not daring to cross her I duly made the call and my appointment was for Monday at 2.00.  I then planned that if I was able to walk a little by then to go visit with Judith Holden, Patricia Nelson and Christine Fowlie who would all be on M2, my specialist ward. Alas this was not to be.

Colin arrived home with a very excited little girl.  I asked from my bed, I hadn't been able to get up properly since the episode on Thursday and it was now Saturday if she had missed me or her mommy.  She said no then added well I missed you grandma.  On seeing my shocked face she added, "well I didn't really but I knew it was what you would want to hear"  so we have a very diplomatic girl here.  The short holiday was a huge success and they are planning to do another one through the long school holidays.

Early hours of Monday morning I knew that I was getting the dreaded UTI.  I took a bath, pain killers but all to no avail, it slammed me hard.  When Colin woke up I told him there was no way I could go over to Sheffield, the thought of being bumped around in a car was a nightmare so I rang to call off my appointment  I am to ring them if my symptoms persist once I am clear of the UCI.

Colin was a star.  As I had been in bed virtually all the time since Thursday he stripped it all and put on my very favourite bedding, pure white with a heavy cotton thread count and nicely starched.  A clean bed, lovely white pjs and I was ready for a very much needed sleep.  I am feeling a little better now so hopefully once antibiotics do their job I will get back to my "norm".

Laura Parker

Today is the day Laura is to be laid to rest in Rotherham.  I had planned to attend this funeral, sadly it is not now to be.  The messages keep coming thick and fast and we see just how many peoples' lives this young girl touched.  I am sure her service will be moving but I  am also sure that there will be many tears of joy too as tales of what she got up to in her very short life is talked about after the service. She was a ray of susnshine right to the end of her life  so what better accolade.

Gem Cousins

Gem is currently having a three month holiday taking in Dubai and Australia. I for one am loving seeing all the pics she is sending back.  Typical of Gem though, she still finds time to search for things to help us with ph.  Her latest link is found here and it is very interesting.  The article suggests that people with damaged hearts could benefit from taking Vitamin D.  I am up for giving it a go.  Thanks Gem, so thoughtful of you to take the time out whilst on your amazing holiday to post this.  Hope the ph meds travelled well for you.  

Steven Baker had his hickman line fitted yesterday at Brompton and I hope he begins to feel the effects on his heart once the drug begins to do its job.  As he has a little girl he has much running around and playing to do with her yet, go well Steve.

Red Flag Pulmonary Hypertension Symptoms

Sorry I am not sure who posted this but it is an amazing piece to show just what to look for when unknowingly suffering with ph.  This just COULD get somebody to make their doctor listen.   Please read, it may well be your life that is being saved.  Here is the link: -

http://pulmonaryhypertensionnews.com/2016/03/29/9765/

The Last Time

Found this and how poignant it is, we should all remember: -

All for now, my head has begun to swim again, time for sitting down me thinks!!

Have a good day and if you have liked anything you have read on here please like and/or share.

Love to all

Carole xxx 

Laura Parker - Wish I didn't have to post this

Laura Parker

Oh how I wish we had come to the day we did not ever have to write such things as this in our blogs or on our Facebook pages.  Sadly we are not at that point so it was that yesterday I posted on my Facebook page the very sad news that we had lost Laura to PH.

This news leaves us here in the UK reeling as it seems only yesterday we also lost another very popular, very well known ph fighter, Karen Farminer.  To any new ones reading this blog you will never get to "virtually" meet either of these two amazing people but I can tell you now how very badly they are missed.

Laura was so lovely, so bright, so full of fun.  I only met her through the dreaded ph but still it was always a pleasure to meet up with her when I went for my hospital visits.  She spent a lot of time as a resident of M2 Royal Hallamshire which was my specialist hospital.  She talked about her husband Stephen and her son Jack.  Her pain on having ph was obvious and her worries were for her husband Stephen and her beloved son Jack, aged 7.  She told me that Stephen was a great dad so she knew when she had to leave this earth he would be fine with his dad but as a mom she wanted to be with him in every step of his young life.  She wrote him birthday cards, christmas cards, cards for when/ if he got married, had a baby etc.  Such was her need for him to never forget her, that she would always be a part of his life.  

I do not believe Jack could ever forget his mom.  He is surrounded by people who loved Laura deeply,  people who will alway be telling him about his mom, showing pictures of the happy times they all shared with Laura.  His dad, whom I had the pleasure of meeting will be reminding him of his mom as he grows out of childhood and into adulthood.  I also know that Stephen is very capable of taking care of Jack.  He has needed to do this for many many months as the toll the ph took on Laura's health grew and grew.  It was Stephen who did the school runs with Jack, who made sure he did his homework (although I know Laura as a school teacher worried about if he was made to do enough!)!,  it was Stephen who carried on the daily life of living whilst he carried the unbearable pain of knowing he would shortly be losing his lovely wife. How my heart goes out to all of her family right now, to her parents who were with her when the decision was made for her to go home to die, to Stephen for the ache he will now be feeling, the pain of losing his life partner and to Jack who now has to live a life without a much loved mom.  

Death when living with ph is with us at all times, we know ph is progressive, we know without the medications most of us would not even be here right now.  What we also know is that on these sites are people who have lived many many years with ph and are still phighting today.  We also know we need to remain strong, even when reeling under the blow of losing Laura, we need to keep believing that daily the cure comes ever near.  We must never lose sight of that.  Sadly the cure was not to be in Laura's lifetime, her body just had too many complications to fight it all but believe me it will come, just keep believing.  

Laura you are not forgotten, you live on in the memories of the many people that loved you, just look at the pictures posted on your timeline, you see all the pain at your passing you see all the pictures of the happy life you had as a very popular girl, a real party animal until the ph took over.  You live on in so many peoples memories. 

and away they go ..........

Colin is taking Izzy away for a few days in the motor home, how excited is she.  I am not allowed to go she tells me, this is just her and grandads  time together!    The van is here, food is ready to be loaded and plenty of toys "just in case" the weather is not being kind to them.  Plenty wet weather gear is going to be loaded along with her bike and scooter.  I shall of course keep in touch daily with them but I know they will have a great time together.  They are only going to be just over an hour away from home in case Colin is needed here with me.  Fortunately I have family and friends close by I can call on should the need arise but I am hoping that need does not occur and that they have a truly super time together.  They are heading off to York.

York is an amazing city with so much history all around and so much more to be discovered over time as  underground  there are still excavations going on. As we try to teach Izzy history where and when we can we know she loves this place, walking down the shambles, learning about why the houses were so close to each other, hearing about the lack of sewers etc.  We have ruled out her going into the York Minster as I believe she is too small to take in the magnificence of the place, anyway as I have said before the cost of this place being built in the times when money was so tight for the poor still gets to me. 

The site of the park they are staying on is truly superb.  People book for many months ahead to ensure themselves of a place here.  It is right on the side of the river and nestling side by side with a magnificent park to ride her bike on they could not be going to a better place.   

Up and down 

Since being infused with the ferinject a week ago I have not been too well.  I truly do not believe it to be the infusion as I have been infused before with this, though not on a study, and I did fine. The first couple of days I was fine then I spent three days in bed unable to even get a bath.  Now  I find my mornings are ok, I get out and about and do what is needed to be done.  By midday I begin to go off as I call it.  My legs begin to buckle and I feel myself going faint so  tend to spend my time sitting in a chair with my feet up.  I am so afraid of fainting as this could mean an end to my cruise, the insurance company would surely take a dim view of my leaving the country with the fear of this happening in foreign climes.  Colin was going to cancel his trip with Izzy but I have assured him that all will be well.  With ready meals in the fridge and nothing to worry about he can go about his small holiday knowing I am not going to be headed too far away.

I hope not!

I was playing online scrabble the other day  Izzy came over to see what I was doing and said it looked very interesting.  I told her that when she could read a little better she too could play it.She looked at me matter of factly and said "yes but you will be dead", when I looked at her quizzically she also quickly said that probably her mommy would be too.  Just how old does she think it will be before she can read anything and everything.  She is doing very well now, the teachers are very pleased with her progress.  I think I shall buy a scrabble game board for children.  I am determined to play this game with my grandchild before I die!!!!!

Collapsed drains.

My daughter Danielle has a collapsed drain at her house.  This means all the drive being dug up, excavating down to the problem to a depth of one and a half metres, quite a big task.  The insurance company have been informed but as is usual the claim just gets more and more complex.  They wanted a dvd of the collapsed drain, easily done with the cameras they have nowadays and they wanted to know depth of said drain etc.  Now all this is done they want a full breakdown of costs so whilst all this is going on it is not good to be in her house using the drain.  She is very fortunate that she can spend time over at her boyfriends house.  I wish that the insurance company would be quicker with the go ahead for the said works to be carried out, surely it is a question of health and safety, not good to have broken drains.

We are very fortunate that we have a nice man Chris in the life of Danielle, he takes over with all the things that Colin used to do.  This was getting to be quite a strain on Colin.  He not only has me to take care of and of course we are fortunate enough to look after Izzy too but as Danielle was a single parent and a very hard working one at that it seemed to be down to Colin to sort out anything else going wrong in their lives.  Chris seems to be a very able guy and he has taken on the mantle of dealing with these things.  I believe Danielle will be helping him out too such as in the decorating of his new home.  This relationship seems to be working well and I pray that it lasts.  It has certainly  taken away a lot of the stress on Colin and so consequently me.

Gem Cousins and the problems of travelling with ph.  

I opened my Facebook page today and had to smile, sorry Gem.  The picture is of Gem who is headed off to Australia for three months.  It shows the amount of medication needed for such a length of time.  I only ever had two months supply at any one time when travelling as I never went away as long as Gem is doing.  I wanted to post this just to show anyone reading this blog who does not have ph just how much suff we go through  over a three month period, quite bazar to see it all together like this, bet the airline looked rather shocked!

I remember when I was on infused iloprost and all the stuff needed, thank goodness Gem is not on this or she would almost need a whole airline to herself to get all the tackle in the hold.  I know we were told we needed to take all my vials of iloprost into the cabin with us as it would be too cold in the hold.  We had many many boxes of the stuff!  The stewardesses were very obliging as they found places for all these along with gloves,  lines and sterilising equipment etc as I needed to change my pump en route.  It made for a lot of wandering up and down the aisles as people were nosing and them telling their friends that something weird was happening!  

Have a truly great time Gem, what an amazing holiday, I am so looking forward to seeing how you are getting on with this adventure.

Right, time to go, breakfast to be had and then to make sure all the food in the freezer is transferred to the motor home.  We have a very excited like girl bouncing up and down right now!

Go well everyone, I send each and every one of you warm love  

Carole xxxxx

Blindfolded infusion and plenty testing

Ferinject

This is a study to see how patients with low iron can be helped by infusions.  We do not retain iron as a "normal person" so we are often low in our reserves.  Quite why this happens with us is still open to studying .  We cannot just take iron tablets as our bodies do not absorb it, hence often the need for us to have ferritin infusions.  This is a study watching and testing how we react in our exercise capabilities when we have the said infusions.  It is to see if our breathing improves as low iron hinders our breathing capabilities and to see if our hearts work better when given the extra help with the iron. There will be much more into it than that but hey, I am not an expert, I am not a scientist I am just somebody living with this disease who has decided to do all I can in the search for a cure for us. 

Transplant was out of the question for me, my age and a problem with my neck means that it is not an option.  This means that like it or not I am stuck with this disease.  There is no way back so we have to move forward and I want to get involved in the search for a cure.  I want to know that when the cure comes my being a guinea pig has helped to bring this disease to a halt, to stop it in its track, to in effect tell it to sod  off, we have won the battle.  I know this day will come, I know that every day we move a step closer, I know that there are research labs world wide with some of my blood in their freezers, that it is being worked on, looked at, analysed and tested.  

I seem to have stepped away from my ferinject study but I will come back to it.  When talking to my trial co-ordinator we were discussing various things.  Sheffield have decided to make us that trial or do studies a sort of a log book.  This is a great idea because we do so many of these things it is hard to keep track of them., The log book will say which trial or study we are on or have been on, date begun and finished or still ongoing.  Some of these studies last for years and can easily be forgotten as they just necessitate giving blood, lots and lots of it at certain hospital visits.  This blood then is sent worldwide in the search for a cure for pulmonary hypertension. Because we are a rare group our blood and our acceptance to do these studies, to give this blood is so very important.  If we had a "normal disease" there would be blood a plenty for studying but hey we are not, we are sooooo rare that we must give what we can so the researchers can do their work. 

This particular study I am now talking about is one called The Pulmonary Hypertension Blood Biobank.  It is a world leading research programme aimed at bringing about new treatments for the disease,  The collection, held at University of Sheffield Medical School has collected samples from 400 patients taken at a diagnostic right heart catheter when PH is suspected.  The biobank gathers extensive deep phenotype data to match each blood sample.  This Biobank is run at the Pulmonary Vascular Disease Unit at the Royal Hallamshire - the UK's largest PH centre.  The research is shared nationally and internationally in the drive to develop treatments that can reverse PH rather than solely fighting symptoms.  

Because PH is such a rare and diverse disease we need to keep adding to the Biobank, by the patients taking part in this study at Sheffield they are helping people worldwide in the search for a cure, you should all be proud of yourselves.

Cohort Study  Now many of us are on this and many more can take part in this very important study.  Again all it takes is for you to give blood and fill in a questionnaire, how hard can it be.  They are still looking for recruits in this very important study.  This study is with the Royal Brompton and Harefield Hospital.  Their aim is to recruit ALL patients in the UK with the rare form of Pulmonary Arterial Hypertension.  The aim of the project is to discover new mutations for the disease and to determine what environments or genetic factors lead to poor outcome, and to understand the trigger that lead to disease in patients with mutations.  For patients taking part in this study there are additional urine and blood samples as well as epidemiology questionnaires when attending for their routine appointment.  Follow up is planned for up to 5 years or death.

I do these studies and really it is no effort on my part but the research material gathered is enormous and to know that it is seen worldwide means such a lot, it means that we are all taking part in the search for a cure.  It means that we are going into battle against this so cruel disease.  We need more in our army to fight this disease so please, if you are not on any of these studies try if you can to play your part, we need as many soldiers as we can get to beat this vicious opponent in this battle to win this particular war. 

I have done other trials as I have blogged about on here before so I won't go into them, they are gone but the above are still ongoing so if you are not already participating please if you can give it a go.

Right - back to Ferinject

Well a very tiring study.  To anyone still with me with this blog, and I don't blame anyone for leaving without reading it all if you do not have ph as this can be boring to you, it was really pretty good too.

I had been booked into the Rutland, a hotel just four minutes from the hospital.  Having read the reviews, some amazing and some not so good  I was not sure what to expect but in fact it is great.  The beds were so comfy, the wet rooms enormous and the staff were so kind and caring.  food very good.  Cant fault this hotel and all they did for me.  

I was dropped off at 9.30 at this hotel and breakfast was just finishing.  However they were very obliging and made me a beautiful plate of food with smoked haddock and poached eggs, the eggs were not cooked with vinegar which many hotels do so they were great.  I had left my bag with reception and then I went to the hospital.  My first test was at 11 o clock but I wanted to visit with Laura Parker, Pat Nelson and Judith Holden.  

Laura Parker, sadly this visit was not to be.  Laura is very very poorly and she along with her family and hospital staff had made the decision for her to leave the hospital to be with her family.  I know her son is only 7 and she needed to be with him and her husband.  It was with a heavy heart I heard this news and I am sure that you all wish her a peaceful and loving time with her family and friends.  Laura is so lovely and so young to be in this position, this disease is so unfair and it doesn't take into account what a good person you are, how old you are, how many people need you, it strikes indiscrimenately.  I hope for Laura the peace that she deserves with all the people she loves and that love her surrounding her at this time.  

I spent lots of time between tests with Pat Nelson and Judith Holden.  It is always lovely to catch up with  fellow ph patients we have "talked to" over time and to meet new ones for the first time too.  Pat and I had already met so she was quick to bring me up to speed with the happenings on M2.  Judith I had never met in person but it was lovely to meet with her and chat about the hickman line she is to have fitted in April.  Having been there and done that I could explain some of the things to expect.  

This started with all the normal tests we ph patients expect at every visit, bloods, e.c.g. blood pressure etc.  All well so I was then allowed back to M2 for a short while and then onto MRI at the University MRI centre.  I always go there, don't know why I don't go to the one for the NHS but I am pleased I go where I do.  I know the people taking the MRI and I love that the machine and room is so lovely and tidy and newish.  They had to put me a catheter in as this was an MRI done with contrast.  45 minutes later I emerged from the tunnel and was taken back up to O ward, the research ward. Onto the six minute walk test, some of us hate this test.  If you do not have ph you will not understand but for those with ph it can seem like a huge battle.  However it was a good day for me and this I managed very well.  Off then for my sandwich, salad, no butter, no seasoning and to follow it a green banana!  Oh well, no worries.  Then I was told I must go back to my hotel and rest up for one to two hours to be ready for the bike test.  

After a quick pit stop on M2 with Pat and Judith, a cuddle from Proff Ian Sabro (anyone can have a hug with Ian, he is such an unassuming guy yet so academically up there with the big boys}it was back to my hotel room which I saw for the first time.  I was impressed with it and quickly got my feet raised on the bed and rested for a while.  

Back to the hospital, a natter with Pat and Judith and of course the lovely nurses and it was time to go for my bike test.  This one  I was dreading.  In I went to the lions den and Ian was waiting for me.  First of all breathing tests were done and then the machine set up attached to the bike.  The measures were taken  from my walk test as to how hard the bike needed to be to ride.  All the pads were once more put on my body and I was attached to many electrodes before I began. The horrible mask is put over your face and any oxygen in the mask was taken out for just a second to get the mask to fit tight, a weird  sensation.  Then on with the test.  It took in all around 17 minutes and it started very easy and then began the climb up the hills, horrible,  I tried as hard as I could to maintain my pressure on the pedals, I was biking at 64, no I am not sure what it all means either but  was told to maintain this.  Once I had reached my peak and the level on the front of the bike showed I was done, the levels were  dropping down to 58 the bike test ended.  Off came all the electrodes, my mask, which left deep marks on my face so tight did it have to fit I and was free to leave.  

Back to the hotel for an early dinner as I had to rest, I was so shattered.  My next test was a fasting blood to be taken at 7.00 in the morning.  

Arrived at 7.00 and blood test done it was time to go back to the hotel for breakfast.  I was informed that I must eat it at all costs before  could ride the bike again.  This time all was the same except that instead of a nice steady climb up the hill it jumped after three minutes immediately up to the peak of where I had ended it the day before.  Gosh the shock of that sudden climb!  Anyway all done, away for a natter with Pat and Judith and back to the hotel to collect my bag.  

Up again on ward O and another catheter was placed in my arm, by this time it was hard to find anywhere that was not bruised as I had had so many bloods done and the catheter for the MRI,  All done and then the wait for the ferinject to come up from pharmacy.  Now here is the thing ...........

We must not know if we are having the real thing or the placebo but if I didn't get the real thing this time then next time I would, still not knowing which I was on.  As I was sitting in the waiting room I saw a bag arrive from pharmacy in bubble wrap, to me it looked like blood, or iron, this was taken away by my nurse so I assume this was for me so in all honesty I believe I was given the real thing this time.  I didn't let on what I had seen, after all it may not have been for me but it did go into the room I was to go in a few minutes later!

Onto the bed I went, blood pressures taken, vital signs etc and then I was to have my infusion.  To do this I was blindfolded, yes blindfolded for a short while and the infusion was set up, my arm was bandaged around the lines and the curtain was closed so I could not see when the blindfold came off what was infusing!  Twenty minutes later and it was done, blindfold back on whilst the lines were taken out of me, vital signs taken and hey ho away we go!.

One thing though, I have had ferritin before and the day following infusion when I pulled m eyelids down they were a bright red, not this tine though so maybe, maybe not. 

This study will have just 60 participants worldwide.  I think it is amazing that all studies and research are shared throughout the world.  

Just before I left Mercy my trial co-ordinator gave me a big hug and said she had been concerned as there were so many tests and she worried it might prove too much.  Now they may not sound a lot to a layman but trust me, with ph these tests do take it out of you!  She then asked me if I would be included in a video and a paper that was being done to aid research.  It looks at research and studies from the patients perspective, why do we do it, how are we treated etc.  Of course my answer was a big yes so I do not know when it will be done but I will be a part of it.  

Following a quick goodbye to Pat and Judith, who I feel will by now be firm friends it was time for my taxi home, oh the bliss of walking into my own home!  

Next appointment to do it all again is 14th and 15th June.  

So there you have it, another study underway, not too onerous but tiring nonetheless.  Now I will try to get another hour of sleep in before Izzy arrives as school is closed but my daughter is working.  

Take care all, sorry if it seems boring but people need to know these things!

Love to all 

Carole xxxx