Sunday, 30 March 2014

Early Mother's Day Treat.

I had my Mother's Day yesterday and lovely it was too.

My eldest Laurence aged around three
The plan was to either take me out to a posh restaurant or cook at home for me. As my health started to deteriorate the restaurant idea was quickly shelved. Then the cooking for me plan when out the window too, so what did they come up with? Well I was bungled into the car and driven to Laurence's where a Chinese take away awaited me. Now I know some of you are going 'what were they thinking' but it turned out to be the best meal I've had for a long time. There was no off putting huge plateful, and I didn't feel pressure to eat everything put in front of me. I could pick and choose and I probably ended up eating more solid food over the space of two hours than I'd eaten the whole previous week. I even downed a couple of glasses of full sugar Cola. I know I shouldn't be having the caffeine but I'm so weak at the moment I needed something to give myself a boost.

Unfortunately the day was over all too quickly. I was very tired and I think Peter was anxious I rest to enable the food to do it's work. Back home I had a glass of Complan and then dozed until around six. It was lovely to wake up feeling full. I had more tea and more Complan and even tackled an apple before heading to bed at around eleven.

Andrew around six months
This morning I woke to tea and toast and then got up to watch the Grand Prix before a lunch of steak and chips. This wasn't quite as successful as the Chinese as I felt under pressure to eat everything. Picking is definitely the way to go as far as my appetite is concerned. I am trying and I'm really annoyed with myself for letting things slide this far back. I was doing so well. The sickness tablets were keeping everything under control and I was managing to eat a lot as the constant feeling of nausea had gone. Now it's back and it is going to be very difficult to get everything back under control in time for my next visit to Papworth in two weeks time.

Those on Flolan will know that the dosage is partially controlled by weight. This means if you loose weight the drug becomes more concentrated in the body and if you put on weight then it becomes less effective. That's part of the reason the PH centers are so paranoid about your weight. They need to be sure you are getting the right dose for your body mass. By losing half a stone, actually a bit more than that now, I'm caught in a Catch 22. I'm getting a bigger concentration than my body can take which is making me feel sick. The only way I can get rid of this feeling is to put on weigh because the Brompton will not lower the dose any further. However how can I put on weight if I'm feeling too sick to eat? See the problem?

I know I can do it, having done it at least once before, but in two weeks! I don't think so and it's stressing me out. I've tried explaining to the transplant team that I'm doing my best but they don't seem to hear me and just tell me off for not making the effort. They have had the grace to admit that they don't usually have to encourage patients to put on weight, it's usually the other way around, so maybe they think putting on weight is as 'easy' as taking it off. I'd argue it is harder. Peter worked out that in order to put on all the weight I have lost plus the little bit extra Papworth were hoping for, I'd have to eat six Mars bars a day for the next two weeks. That's just not going to happen. All I can do is eat what and when I can and hope for the best.

Weight aside I do feel a bit stronger today and a bit better in myself. My mood is certainly on the up.

Tomorrow I'm off to the GP to collect my sick note for the next week. I'm sad I'm having to take another week off work but grateful that I didn't end up in hospital. On Tuesday I've got to visit the Lethal and Deadly for repeat bloods just to keep a check on things. After that it's a 'wait and see' situation.

As you know we've been having a clear out and Peter came across my oil paints. I have no idea what state they are in but if they are good I might try a little bit of abstract art to keep my brain ticking over. If the weather is nice I might sit on the back step and watch Peter do some basic tidying up around the garden for me. I'm desperate for anything that isn't daytime TV.

Just a gentle reminder to sign the organ donor register

It is Andrew's last teaching week in uni this week, that time went quickly. He now has a month off with Easter break and study leave and then he is back in for his finals. June and July he will be on placements and he qualifies at the end of August. The start date for London Ambulance Service is November so he will be able to take a couple of very well earned months off before launching into the world of work. We won't know about the East of England start dates until he's got through the next set of interviews which for him is on the 10th April. I have to say it has been a roller coaster few years but once he is in work and happy it will be worth it all.

The pictures in today's blog are of the little men who made me a mum and now are both big enough to carry me around.

Friday, 28 March 2014

A Foggy Day in London Town

Well the trip to the Brompton produced the usual mixture of good and bad news. Unfortunately this time I got more bad than good.

The day started badly when I woke up with a thumping headache and feeling pretty rough. I'd had a rough night breathing wise and was tired and crotchety. The weather definitely did not help as I pulled back the curtains to be greeted by a thick bank of fog. Brilliant! Travelling into London is difficult at the best of times, fog was not going to make it any better.

After a quick breakfast of tea, tablets and half a slice of toast we set off early expecting a lot of problems. As is always the way when expecting the worst, we sailed in and found a disabled parking space right outside the hospital doors. We were thirty minutes early. So I was sent off for an ECG, Bloods and ECHO, weighed, had my blood pressure and SATS taken and then plonked in the waiting room to, well, wait.

The first thing the doctor said was 'what have you been doing to yourself?' He then went on to say how pale I was and why wasn't the smiling bouncy Hazel he always expected in front of him. I explained everything that had been going on these last few weeks. The faints at home and at work, the feeling 'not quite right' the sickness and the head cold. He did all the usual listening to my chest, taking my pulse etc, etc and then delivered his verdict.

My chest is clear of infection and my heart is in sinus, but my blood chemistry is all over the place. I'm low on Potassium, Magnesium, Iron, etc, etc. My Oxygen SATs are lower than expected, my blood pressure is slightly up, my pulse is too high, and the ECHO showed a few changes for the worst too. Clearly all is not well. Now it could be that a lot of it can be accounted for with my recent bout of illness. Certainly the blood chemistry would have been affected. Other things he's not so sure about and these need further investigation.

So he has ordered me to stay at home for at least another week and get over things properly. If I'm feeling OK after a week I can do normal things again. However if I don't feel right I am to stay at home and rest. Naturally I'm to let him know immediately should things worsen. In the meantime he will arrange for me to go in for a few days for further tests A repeat ECHO, a CT and if needed an MRI. Joy!

However the good news is that I've finally been granted the Viveltri (spelling) and so while I am in they will start me on that too and if necessary increase my dosage slightly. After all, as the doc pointed out, I have been on the same low dose for almost three years, which is much longer than they'd predicted.

So it is back on the sofa and Complan and I'll have to call work and tell them I'm on Doctor's orders to stay put. At least I got a day out and wasn't shuffled straight onto the ward. Time to get the paints out again I think. Oh happy days!

Thursday, 27 March 2014


I woke up this morning feeling normal at last. There was no lurch of the stomach. No fear of taking a sip of tea and no need to perform the three second mile (or equivalent) into the bathroom. Internal peace has been restored.

Yesterday I trod very carefully and sipped on every flavour of Complan there is, except chicken,  I cannot get my head around a savoury milkshake. With each glass my stomach's reaction lessened until at six I felt confident enough to take my evening meds. I spaced them out over an hour with copious amounts of Complan in between and they all stayed put. This morning I had yet more toast and some tea and took my morning meds in the same way and yes they have all stayed put too.

Now that I'm feeling more myself the two days with nothing but Flolan doesn't seem to have had too much of an ill effect. That will be confirmed or not when I attend the Brompton tomorrow. I'm a little bit more breathless, I have no doubt that my warfarin levels are non existent and my ankles are huge, though the diuretics I took this morning are beginning to help with that. Of course I have no way of knowing what is actually going on inside but I drank enough Complan yesterday to get 100% of my RDA of Iron, Pottasium and Magnesium and those are the ones people with PH really have to watch out for.

Today I feel up to normal food, in fact I have a real craving for chips, which of course would be a big mistake this early on. So I'm going to settle for something a lot less greasy. I haven't quite decided what yet but a small portion of pasta with a simple tomato sauce sounds promising. I certainly cannot face meat or anything heavy at the moment. And I don't want anything milky either, I'm getting enough milk with the Complan. At least my bones will be in good shape with all the Calcium I'm consuming.

All that's left to do is say thank you to everyone who has wished me well and helped keep my mood up over the last few days. This illness would be so much harder to cope with without you all.

I will let you know how I get on at the hospital tomorrow.

Wednesday, 26 March 2014


Just when I thought things couldn't possibly get any worse fate/God/whoever decided to prove me wrong.

Before I start this is not another pity party post, well maybe a little, but a lesson in how quickly things can change when you have PH.

As you know I didn't go into work on Monday as I was so tired I could hardly stand. Now I'd put this down to being distressed and catching Peter's cold. The real reason made itself clear later that day.

I didn't feel like lunch but took a few mouthfuls and then moved everything around my plate for twenty minutes before giving up completely. Peter went out and got me some chocolate which I sucked on intermittently throughout the afternoon. Tea time and again I didn't want anything but this time put it down to having the chocolate. Peter reasoned that my lack of appetite was probably down to being so tired. So it was decided I'd stay up to watch Eastenders and then go to bed early with a warm milky drink.

Then it started.

The first sign of trouble was what I took to be chronic indigestion then overwhelming nausea. I made it to the bathroom in seconds, Peter says he hadn't seen me move that fast in years, and there I stayed until the early hours when I fell into bed exhausted. Tuesday morning I woke and tentatively sipped on the tea Peter had left for me. Big, big mistake! And another few hours in the bathroom ensued.

By now I knew I was in serious trouble. My Flolan was OK Peter changed that for me. But all my oral meds had fallen by the wayside. Once out of the bathroom I became more or less unconscious for the rest of the day only emerging around eight last night with raging thirst. I downed a glass of water probably quicker than was wise but amazingly it stayed down. An hour later another glass of water followed by a weak tea, no milk. Then back to bed and a long deep sleep.

This morning I nibbled on a piece of dried toast and have, so far, downed three cups of tea with milk and a good helping of sugar. I'm still feeling a little queasy after each one but they are staying down.

One thing I have to comment on was the devotions shown by Smirnoff. He was greatly perplexed by the fact I didn't get out of bed but when I did I spent a long time behind a locked door making odd noises. He nuzzled me, meowed at me, tried to dig me out from under the duvet and finally snuggled up tight along my back and purred loudly. In the past when I've been this ill it was Tarmac who provided the comfort. Now it seems Smirnoff is out to prove he is more than up for the task.

Both Papworth and the Brompton were called. Amazingly Papworth have kept me on the list stating that they cannot risk not trying to do the op if organs became available. The plan would be to test for any bacteria and if the surgeon was happy to go ahead anyway. Only if the infection levels were dangerously high would they abort. Brompton was more worried about the lack of medication and are arranging for me to go in to see them on Friday (when I will be less of an infection risk to other patients) to see what damage I've done. Hopefully the temporary stoppage will not cause any real problems but they need to check things like my potassium and magnesium levels as they are very important to PH sufferers. Papworth wanted to know how much weight I'd lost and the answer was an astonishing half a stone. I'm back down to seven stone eight pounds again but at least it's not at bad as the seven stone I started from. However it does mean I'm going to have to do some serious stuffing when my appetite returns. Papworth are seeing me in a couple of weeks and are expecting serious improvement in the weight situation.

Apart from my sore stomach I've had a few palpitations and my ankles are the size of baseballs and of course my breathing is terrible. When you take those handful of tablets every morning and every night you don't realise what effect they really have. I tend to think of them as nuisance value only and see the Flolan as the one I must not mess with. However the delicate balance has been disturbed and although it only took a few hours to become unbalanced it is going to take days, if not weeks, to restore the equilibrium again.

Any 'normal' person would brush off a tummy bug in a couple of days. You forget how delicate our situation is until something comes alone and reminds you. The problem is where the hell did it come from? Peter has been fine and at home we have eaten the same things. The only things we can put our fingers on is one of the apples out of the fruit bowl. I do wash my apples but maybe I missed something. Or a yogurt I had mid afternoon. It wasn't out of date and tasted and smelt fine but you can never tell. It might not be either of these of course, I might just as easily picked something up whilst out on Saturday. Who knows.

At the moment I've gone from only having one working pump to having four. Out of the blue two more were delivered Monday morning. I have a suspicion they were not meant for me but the delivery note did have my name on it. I have tried getting through to the company, well Peter has, I've been too unwell, but have given up. Maybe one day they will realise I have something I shouldn't. Until then I'm keeping quiet. After my last experience I think having a few back ups would be very wise.

So this afternoon I'm trying another slice of toast and if that stays down I'l take my evening meds as normal and hopefully things will start to improve. I have a feeling I'm going to be hitting the Complan over the next few days and then indulge in a few fry ups to get the weight back up. Right now though all I want is another little sleep and another cup of sweet tea. Some girls have all the luck. Sigh!

Monday, 24 March 2014

All You Need Is Love...and a good night's sleep

My body finally overruled my mind last night and sent me into a twelve hour, deep, deep sleep. I woke only once when my alarm went off. I hit it, mumbled to Peter to phone work for me and went off again. By the time I woke at around half nine I felt calmer and much better than I'd hoped.

Last night I not only felt shattered but ill. My breathing wasn't right, I'd been sick and was feeling light headed so, with everything else, I'd already more or less decided to skip work today. I'd set my alarm more out of habit than hope that I'd be up to dealing with all the additional strains and stresses work brings. And I think I've discovered why I've felt so 'off' this weekend. I have a cold. All weekend I've been plagued by a dull, persistent headache and put it down to lack of sleep and being upset but it seems there was also a physical reason brewing. I can't say I'm surprised, Peter has been coughing and sneezing all week.

I woke to news that six year old Weston Keeton had also lost his battle with PH. This horrible illness is no respecter of age and this poor little boy never had a chance of a normal life.

Despite bad news piling on bad news I feel more positive than I have done for some days. It is amazing what a good night's sleep can do. It is also amazing what love can do and I have never felt so loved as I have over the last few days. Family, friends and colleagues, along with people I don't even know, have been so supportive. They have contacted me in every way there is, I have over thirty emails to replied too this morning and numerous face book messages. Everyone has said they are praying and hoping my time comes soon, even fellow sufferers who are in worse situations than me. Some have written to say how much they regret their inability to donate because they have illnesses that stop them from doing so. And some have even copied their donor registration into their messages.  And the most amazing thing? Not one person has been mean or nasty. I usually get a few along the lines of 'stop whinging' but not this time. The response has been 100% positive.

I've read back over my posts of the last few days and I am sorry I've been on such a downer but if they have inspired just one more person to sign the donor list this weekend then all the horrible feelings have been worth it.

So, if I can just shake this streamer, I think I might just have started the bounce back up. PH is not an easy illness to live with. Being on the transplant waiting list is as difficult as it comes. Put the two together and sometimes it becomes too much and you have the inevitable melt down. This weekend it was my turn to hit rock bottom, next week it will be someone else who needs to be pulled from the mire. Hopefully I can be as supportive to this person as all of you have been to me.

Thank you for reading my non stop pity party this weekend and thank you for caring enough not to turn your back.

Sunday, 23 March 2014

Sleeping with the What If's

I cannot begin to tell you how tired I feel at the moment. Two nights of disturbed sleep and I'm a complete zombie.

Last night I went to bed deliberately late hoping that sleep would come quickly as I was so exhausted from the previous night. I'd been brooding all day about Lynsey and Kelly and no matter what I did I couldn't get either of them out of my head.

I'd thrown myself into a frenzy of activity, cooking, cleaning and even going out to get some completely un-necessary shopping but nothing worked. I ate a whole bar of chocolate, immersed myself in the worst film I could find and still the bad thoughts kept coming. It was as though I was on a knife edge waiting for some more bad news to come my way.

When I eventually slipped between the sheets I could hardly see straight and did fall asleep quite quickly but kept waking myself up. I'd get to the lovely drowsy stage and then my heart would suddenly race and I'd jerk back to consciousness feeling panicky and breathless. I was literally too scared to sleep. My mind kept racing around in a circle. What if I never get the call? What if I don't wake up tomorrow and I'm number three? What if I do get the call but it doesn't work? What if? What if? Around and around and around the thoughts went while my heart raced more and the panic grew until finally I got out of bed and went and had a drink. Having calmed myself down a little I tried again and did manage a fitful few hours.

By seven this morning I'd given up and just lay quietly under the covers trying to control my breathing. Again the thoughts invaded my head and I gave up trying to relax altogether. The result is that I don't feel well today, some will say that's not surprising while others will say it is my own fault. Both would be right.

However I can't help feeling scared. Some people seem to view me as a sort of super woman. Taking everything in my stride, never faltering, never stopped by anything but they are so, so wrong. Deep, deep down I'm a coward and very, very occasionally this part of me takes over and that's when I know I'm really in trouble. The events this weekend have unleashed this cowardice and all I want to do is run away screaming and hide, but I can't I have to turn and face what's chasing me. The question is how? How am I expected to do that? How can I push the fear back again when it is becoming stronger and I am weaker? This has become an unfair contest and it is one I fear, that bloody word again, I am starting to lose.

Yesterday I was angry, today I'm just numb. I have nothing left to fight with. 

Saturday, 22 March 2014

Black Friday

So far it has been a terrible weekend all around.

Apart from being my fifteen month anniversary on the transplant list, which is bad enough, fate decided to just keep the bad vibes coming this weekend.

Just after posting my blog yesterday I learned about the shocking death of Lynsey Peagram. This death has sent the PH community reeling as it was totally unexpected. Lynsey had been planning, and looking forward to, a holiday with her family. There was no hint that anything was wrong except she'd just dropped off the radar. Then news came through that she'd passed away the previous Wednesday and the whole community has gone into mourning.

Today we learn of another sad death, that of Kerry Thorpe who was a beautiful young lady.

The really sad thing is that both these lovely ladies could have lived if they had got their transplant. All it takes is one donor and up to eight families and countless friends could be spared the pain that is washing over us all right now. These deaths were preventable, they were unnecessary and most of all, if we had an opt out system, would probably never happened. I am so sad and so very angry.

Of course this has made me think of my own mortality and my own chances. To be honest they are not feeling very good right now. The deaths of Lynsey and Kelly just highlights how quickly this illness can take you. You go to bed wondering whether you will wake up in the morning. Every time you leave the house you wonder if you will make it back and every time you hear of someone else losing their fight you wonder 'will I be next'? Because sure enough one day it will be you and there is sod all you can do about it.

However there are people who can help. There are the politicians who should pull their fingers out and get the opt out system in place.And there are the ordinary people who could just simply have the conversation with their loved ones and get themselves signed up. Unfortunately there are a lot of well meaning people out there who have signed up but have failed to tell their families. At a time for great distress, and I can very well understand this reaction, the families refuse to follow the wishes of their loved one and another set of life saving organs are condemned to rot in the ground. I know it sounds brutal but those are the facts. Families get in the way of so many good intentions and all because they don't really know what their loved one wanted, it's shocking.

I won't write anymore today. I can't trust myself not to have a complete breakdown and a massive rant so it's best I stop. All that's left to say is. Please. Talk to your families, make sure they know what YOU want to do with YOUR body and sign the donor list today. Thank you.

Friday, 21 March 2014


Yesterday we did a bit more clearing out and came across a few things that brought back a wealth of memories.

The first thing I uncovered was a book of poems by John Donne. His poems was one of the set texts for my English O level, or was it my A level, I can't remember. Whichever one it was the book has survived all these years with my scribbled notes in the margins. I'm delighted with this find because a) it is difficult to track down such texts these days, b) it is in such good condition and c) I can still remember some of the poems, all my mind needed was a jog. I have now set the book aside to read again and maybe learn the poems afresh, filling in the appalling gaps I have.

The other thing I found was Laurence's baby book. I couldn't believe how lovely some of the photo's are. What particularly struck me about these pictures is how pink I look. I'm a total picture of health with ruby lips and nicely pinked up cheeks. A far cry from the dark blue or purple I sport these days. The only time I have pink lips now it courtesy of Mac Factor. It also shows that I've always been thin. No matter how much Papworth nag I have never been anything but skinny. Laurence is obviously only, at most, six months old and look at me, I'm a stick. I think I'll take these photos with me next time to prove a point. When I said I only ever hit nine stone when pregnant I meant it.

Yesterday afternoon we spent a rather disappointing day in Bletchley. The sun was out but the wind was strong and biting and even with a coat and hat on I felt cold. To top it all our trawl of the charity shops left me empty handed, while Peter took half their book stock away with him. Usually it's the other way around and he can't find anything he wants.

Arriving home we made hot chocolates to warm up and then in the evening we watched the film Topsy Turvy on DVD. It is all about how Gilbert and Sullivan came up with The Mikado and is absolutely brilliant. It is a very long film though and we ended up falling into bed after midnight.

Andrew will not be coming home this weekend as he has work on Sunday and lectures all day today, so it doesn't make any sense to come all the way home only to go back a few hours later. I will miss not seeing him but I'm glad he is earning as it takes the pressure off his grant, and us.

Today it is fifteen months since I was put on the transplant list. I've tried to distract myself but the thought keeps invading my mind, 'will it ever happen for me'? Stacie, bless her, has been waiting twenty three months but at least has had a couple of false alarms. Now I know false alarms are not nice, they must be heart breaking, but at least it is a confirmation that you are on the list and they are looking for a match. For me it's been nothing, zip, not a dickie bird. I know I keep asking every time I see them 'am I really on the list'? And every time the answer is 'yes' but it is hard not to get a bit paranoid when you haven't heard anything at all.

The days started with a trip to the warfarin clinic. Yes how lovely, like that's going to cheer me up. However it wasn't as bad as it could be as I walked through the doors to find I was the only one there. I was in and out in less than five minutes, Peter hadn't even had time to park. I just hope my INR lets me off of a good few weeks as I can't say I've missed going.

Today, to try and distract me, Peter and I are going to do the charity shops in Leighton Buzzard, in case you are wondering why this sudden fascination, I'm looking for a particular book in a series and have been for the last six months. From there we are going to have a potter around the antique shops in Woburn. We might even visit the Abbey and stroll, or in my case trike, around the grounds for an hour. Anything but sit at home and brood. I'm taking my camera as nothing takes my mind off things quite like photography.

Well better get myself into the kitchen. Yes complicated cooking, another distraction technique.

Wednesday, 19 March 2014

The Destructive Power of Fear

I read recently a blog from my transplant buddy and fellow PH sufferer Stacie.

Stacy and I, apart from the obvious age difference, are very similar in many ways. We both still work, we both have damned Hickman lines and we are both normally cheerful 'get on with it' positive people. We've both also been waiting for a very long time for our transplants. The third person in our transplant triangle, Kath, got her much longed for miracle last year after a two and a half year wait. We were both joyous but very much aware that heart/lung transplants do not happen often. Last year only six were carried out and Stacie and I are very much aware that our chances are not great. After all, and lets be brutally honest here, the NHS operates on numbers, especially financial ones. It is more cost efficient and boosts their ratings if two people can be saved instead of one. I'm not saying there is anything sinister or underhand but those needing more than one organ tend to get the last dibs. And so we wait in limbo, neither living to our full potential and always fearful of what is around the corner.

In her blog Stacie admits to her fears of dying and describes how she bottles everything up until the safety valve breaks and it all comes flooding out.

We are all afraid of something be it spiders, heights or snakes but we all share one big fear, the fear of dying. We may not fear death itself but I'm will to bet most fear the cause. I am sure that I speak for most of us when I say we want a quick, painless death, preferably one that we know nothing about. Unfortunately few will get such a death. Thanks to medical science we live longer these days but it also takes us longer to die because the Hippocratic oath makes doctors do everything in their power to save life. Even if that life is one of pain. Both Stacie and I know that our deaths from PH are going to be long, drawn out and painful. I'm sure I speak for both of us when I say I do not want to end my life propped up in a hospital bed painfully gasping for air. I don't want it for me and I don't want it for my friends and family who will have to stand around helpless and watch.

I do not fear death itself. I am not particularly religious but I believe there is something better waiting for me. Hopefully a life without pain and stress. I do however fear the manner of my passing. My biggest fear is to die during transplant, surrounded by strangers and denied the chance to say goodbye. To be denied a good result from all the pain and fear would be too cruel to bear for my family also.

Having said all that I admit there have been times when I've lain in bed and wished for death to end it all. These times have been when I've been so desperately ill that I've been unable to do anything for myself. While waiting for my Hickman line to be put in was one such occasion. I was so ill I couldn't dress or feed myself. I was so breathless I couldn't eat. I was also in agonising pain as my muscles tried to cope with the forced breathing. There have been times since but that occasion was the one when I was so desperate I even wondered how I could end it myself.

Let me say here and now I am not suicidal and would never, ever put my family through that pain by being so selfish, but fear can do terrible things to the mind. Eventually I got my new medication, began to recover and forced the fear into the back of my mind once more. However the fear still lingers. If I'm having a really bad day I will sometimes go to bed and wonder whether I will wake up. Sometimes the fear is so great I won't sleep, stupid isn't it as peacefully in my sleep in my own bed would be my method of choice.

If you let it fear can pervade everything you do. It can alter your outlook on life and eventually it can virtually paralyse you. I know, I've been there but thankfully have always managed to fight back from the depths. One day, and maybe soon, I will lose my fight against this horrible illness and will have to face my greatest fear. How will I react, I don't know, who does? However my hope is that when it does come I will be able to suppress fear one last time and face my next great adventure with a great big smile on my face. PH might destroy my body but I'll be damned it it destroys my spirit.

I hope Stacie will bounce back and continue to be her wonderful, positive self and put her fears behind her. Always right beside you Stacie.

If you wish to read Stacie's inspirational blogs the link is on the right hand side bar.

Sunday, 16 March 2014

Springing Into Action

The weather is beautiful this morning. My body, not wishing me to miss a minute, woke me up at 6.30 and yet I felt perfectly refreshed.

Yesterday was very much a down day, not as in depressed but just charging batteries. I was rather surprised at how tired I actually felt. Andrew of course was bouncing around like a two year old. I think the realisation that his has a job lined up has finally sunk in. Our evening celebration was not to be, however, as he got a call asking him if he'd like to attend the Royal Marsden Hospital's run Sunday afternoon as medical support. He's getting paid so naturally jumped at the chance. He will be stationed at the finishing line and will spend the day dealing with blisters, twisted ankles and, in this weather, probably some minor heat stroke and dehydration. If it is televised look out for someone in a high vis jacket with a medical bag who looks about twelve. That will be my Andrew.

So back to yesterday. In the afternoon we attended, of all things, a jumble sale. When I was a poor student, many moons ago, I loved these events and picked up some rather nice bargains along the way. This time I was on a mission. I was on the look out for some pretty pot plants or mini planters for the window sills and garden. Having been into our local garden center and nearly fainted at the prices I decided car boot sales of jumble would be the best bet. It wasn't to be though and I came away empty handed, mostly due to Peter who, when something caught my eye, went, 'not what you are looking for, put it down'. Just as well really as goodness knows what useless old tat I'd be walking away with.

Andrew headed back to Hatfield around tea time and Peter and I settled in to watch the first qualifying session of the new Formula One season. Yes it's back! I was torn between watching Wales in the rugby and the F1. In the end I chose the rugby and thank goodness. What a match! I recorded F1 for later. So today we are studiously avoiding any news bulletins, as being an Australian GP it was all over by about nine our time, until we can watch the rerun this afternoon. This I'm finding rather frustrating.

Like many people I am watching the search for the missing Malaysia aircraft, and, like almost everyone, I am wondering what the hell happened. I love a good mystery and this one is about as odd as they come. I can't imagine how the families of the missing are feeling. It is bad enough thinking they have ended up in the sea but to not know one way or another must be awful. If it were a crash there would be debris somewhere. If it is a hijack why have no demands been made? Why are the phones of the missing relatives still ringing? Would that happen if they were under the sea? It's all very strange and, judging by the way the authorities are dealing with it, it's not going to be solved anytime soon.

Someone is pleased to see the return of the sun
I spent sometime in my kitchen this morning giving it the weekly deep clean and preparing this afternoon's meal. For the first time in ages I was able to open the patio doors to let in the fresh air. My garden is busy bursting into life. The silver birch is full of catkins. The forsythia has yellow flowers forming and the other bushes are covered in buds. Of course all this sunshine highlights all the flaws too. The brambles have had a good time and will need some serious cutting back. My windows, insides, need a good clean and my curtains and lampshades need a spruce up. Thankfully I'm off for five days this week, I've got Wednesday and Thursday off as well as my usual Friday, Saturday and Sunday. If the weather remains good then I'll be dragging Peter out into the garden to help with a tidy up. Now I've said that I bet it will rain.

I still haven't uploaded the Cambridge photos so I've included some pictures of my garden last summer. Hopefully in a few weeks it will be as lovely once again.

Saturday, 15 March 2014

At Last! Some Good News!

Well it has been quite a week one way or another.

I appear to be finally coming out of the black mood I've been in for several weeks and am physically feeling quite well. Work has been, well, work really, with all the stressed that brings. I seem much calmer now knowing that I will be leaving soon and what used to upset me no longer has an impact. I feel I now have an exit strategy. All I need now is the transplant in order to put everything into place and finally live the dream.

Andrew's interview with LAS (London Ambulance Service) at the weekend went well and yesterday we were off to Cambridge bright and early for his interview with East of England AS. He was going to go on his own but after struggling to work the last few days through thick fog we decided to give him a lift. I'd been appalled at how many cars were on the road without lights when I couldn't see beyond my bonnet. I'd had a few near misses and, experienced drive of over thirty years that I am, even I was quite scared at times. I couldn't imagine what it would be like for a relatively inexperienced rider on a motorbike.

So off we went all lights blazing but by the time we reached Cambridge the fog was lifting revealing a bright, sunny and rather crisp day. We dropped Andrew at the venue and then headed to the center where we found an empty disabled parking bay outside the old police station. Out came the trike and away we went. I had my camera and had a wonderful time photographing all the colleges and a lovely round Norman church right in the center. We stopped for lunch at a lovely little Sicilian cafe where we had the most delicious toasted sandwich ever. It was full of basil leaves, cheese, tomatoes and peppers and was gorgeous.

After lunch we went and did our grocery shopping, a necessary evil, and then stopped for a coffee. It was while we were relaxing with a large chai latte each that we got the 'come and get me' call.

When we arrived Andrew was grinning from ear to ear. The interview had gone well and he will be hearing from them by the end of next week. However while in the interview he got a text from LAS offering him a job on condition he graduates. No wonder he was happy. He can relax now knowing that, provided there isn't a complete disaster with his finals, he has a job. He would prefer East of England but a job's a job and he can always transfer.

So we arrived home in high spirits and celebrated with some hot cross buns and a nice cuppa. We were all tired, I suspect Andrew hadn't got much sleep the night before, so celebrations were a bit muted. However tonight we will be opening a bottle of wine and toasting his good fortune.

I will post some pictures from Cambridge when I download them off my camera but I include some I took with my phone.

More tomorrow.

Saturday, 8 March 2014


Well the trip to the dentist was less traumatic than I thought, that is until the effects of the anesthetic began to wear off.

As everyone who reads this blog now knows I'm needle phobic and my previous dentist was useless, so too say I wasn't looking forward to this appointment is probably a bit of an understatement.

The first hurdle was lying on my back and practically upside down. All patients with PH find lying on their back difficult but this dentist seemed to know this and kept stopping every ten minutes or so, so I could sit upright. I was impressed. The second hurdle, the injection, was also dealt with sensitively and I can honestly say, apart from some pressure, I couldn't feel a thing. The cleaning took place while waiting for everything to go numb and again there was no problem. However what impressed me most was the filling. It was on a tooth that had an inlay on it. I was expecting to loose the inlay and end up with a huge silver filling but no. This dentist carefully removed the inlay, did the filling and then replaced the inlay on top. I don't look as though I've had anything done. Well except my teeth are now very sparkly once again.

I thanked her and told her how impressed I'd been and then went into the waiting room. Peter was shopping so I was to text him when I finished and he would come and collect me. It was here I realised that I was just that little bit wobbly. I felt a bit light headed and my legs felt weak. Also a quick exploration with my hands revealed my face was frozen from my right eyebrow all the way down to my chin and across to my nose. The right side of my mouth drooped alarmingly and I looked as though I'd just suffered a stroke. This dentist had obviously taken on board my fears about feeling things.

When Peter arrived I had to cling onto him to get to the car. The plan was to go shopping after and I decided to tough it out and give it a go. I used my trike and began to feel better though I kept nervously wiping my mouth in case I'd started to drool and couldn't feel it. Shopping done we returned home and I attempted a cup of tea sucked through a straw. Not great but it did minimize spillage. I'd been told to eat just soft items for the next twenty four hours to allow the inlay to set again. I was dying for an apple but put up with a can of chocolate rice pudding instead.

By nine I began to feel and boy did I feel. My gums felt as though they'd been ripped apart and a dull insistent throb started in my right jaw. This throb developed into a pain that started in my jaw and shot into my ear, so out came the paracetamol. By bedtime I'd managed a few more drinks and a couple of yogurts. I'd also sucked my way through a packet of crisps and the pain was under control. I toyed with cleaning my teeth, well I want to keep the shine, but decided against it and did a bit of gentle sloshing with mouth wash instead.

This morning I was able to gently hand brush, no way was I using the electric yet, avoiding my inlay. That I do not want to loose. I am able to drink properly now but have yet to test my mouth out on some real food. I'm planning omelets for lunch, nice and soft. I am astonished that simple filling could make me feel so weird. It is a good few years since I've had one but even so, it really knocked me off balance. I can only surmise that the combination of being flat on my back without oxygen and the anesthetic just upset my equilibrium a little bit. I'm still sore but otherwise fine, though I did need a little extra oxygen through the night.

This morning whilst reading the morning papers a small booklet fell out. Now these are usually recipes so I grabbed it in eager anticipation but no. It was a nagging information booklet telling me how much sugar is in 'everyday' foods.

As you know from yesterday's rant I really do not care but curiosity got the better of me and I glanced through. My goodness so coke and sweets have sugar in them, bless my soul, you never say. And fruit does too, shocker! Do they really think we are that thick? I also love the fact that 'everyday' items includes a range of ready made meals and sandwiches. I mean who buys a Starbucks Chicken Salsa Wrap on a regular basis? Have you seen the price of those things? And who in their right minds buys ready made lasagna or toad in the hole when it is so much cheaper to make them yourself? I thought the majority of the country was cash strapped so how can people afford these things? Crazy! Anyway the booklet is a 'handy' handbag size so you can feel guilty on the go. This will not be going anywhere near my handbag and is now safely nestled in the bin.

Right time to attempt something to eat. Everyone keep their fingers crossed that my inlay remains in place. Another trip I couldn't stand so it if comes off I might have to do a Dave from Red Dwarf and look for the wood glue.

Friday, 7 March 2014

A Stab in the Dark

Well this week I spectacularly added to the long, and recently published, fails relating to my medication.

I have done many stupid things in the past two and bit years but this probably ranks up there in the top five, if not the top three.

I was doing my prep and was gloved and wheedling whacking great needles about. Then I sneezed. Now a sneeze over all the sterile stuff would mean starting again because of the risk of infection so I decided to sacrifice my arm as I had a needle in one hand and a vial in the other. I rammed my arm, yes the one with the needle, under my nose and sneezed violently, not one but three times. Sometime during this event I became aware of a sharp pain in my other arm. I looked over to see the partially full syringe embedded into my forearm. I must have jerked when I sneezed and stabbed myself. Of course I then made things worse by panicking, I'm needle phobic, and grabbed the syringe yanking out. During my moment of panic I must have jogged the plunger and the stabbing pain became a stinging one and my hand began to tingle. Blood squirted out of my arm as the vein expanded until I looked as though I had a large pea stuck under the skin. Now in complete panic I abandoned any attempt to stay sterile and grabbed the dressings that came with the pack and slapped them onto my arm. I pushed and held for at least ten minutes until the bleeding had stopped and the pea had reduced.

After clearing up, re-sterilising and finishing my meds I surveyed the damage. I had a huge bruise forming and the site was very swollen. My hand was a bit tingly and numb. A bit like when you hit your funny bone. Otherwise I was fine. Even my heart rate had returned to normal. I let the Brompton know but I do things so often all they did was sigh and tell me to let them know if things got worse or didn't clear up in the next day or two.By the following morning a pin prick mark and bruise was all that was left of my escapade. I live to fight another day.

The rest of the week has been pretty normal. I recovered form my weird tiredness on Tuesday but am definitely feeling more tired by the end of the day. By two o'clock I could easily curl up under my desk and sleep, something that I haven't experienced for a long time. Something is going on, just wish I knew what.

Another thing I've been experiencing recently is a sense of expectation. I know I've said similar things before but it is a really strong feeling. It will probably pass in a few days and nothing will have happened but hey ho you never know.

On Wednesday I saw the welfare lady at work and told her about everything that had happened over the last few months. She was extremely helpful and talks a lot of sense. She was very encouraging about my plans for a new start after transplant. I really look forward to our meetings because it is the one place where I can let everything out and not be judged. I need that outlet sometimes or I'd go mad.

In the news there is yet another report saying we shouldn't eat sugar, meat or fat such as cheese. Oh for goodness sake! What are we supposed to eat then?

I occasionally have a bit of sugar in my tea. I occasionally enjoy a macaroni cheese. I occasionally enjoy a bacon bap. The key word here is 'occasionally'. I have never followed food scares like this. I've always stuck to the mantra, 'a little of what you fancy does you good' and I believe it has served me well over the years.

If the Department of Health is really serious about tackling obesity then maybe the unemployed should be given food tokens as part of their benefits which can only be used to buy fruit and veg. Maybe those in work could get cut price, or even a period of free, weight watchers or gym membership. There are lots of things that can be done without scaring everyone to death and punishing those who do eat healthily but occasionally feel the need for a blow out. We've all been there, on the sofa with a 2lb box of Dairy Milk and a crate of tissues after a break up, we don't need to feel guilty about it.

Just like the alcohol problem, putting up prices punishes everyone and alienates those who just like a quiet tipple now and then. So what to do? Well I don't have any answers except don't use a sledgehammer to crack a nut.

Well I have the joy of a filling at the dentist this afternoon. So I'd better get my chocolate biscuit dunking in early. I'll let you know how it went tomorrow.

Tuesday, 4 March 2014

Hello Symptoms My Old Friends, I've Come To Meet With You Again

Well that didn't exactly go as planned.

I had the day off today and was really looking forward to having a mooch around the shops followed by a nice meal and a quick trot around the charity shops before heading home.

The day started well. I woke up at eight after a really good night feeling refreshed. I had breakfast in bed with the papers and then spent half an hour wallowing in my favourite bubble bath. I dressed warmly, the sun was out and the sky blue but I wasn't fooled and knew it was going to be cold out there, and off we went. First stop was Milton Keynes so I could drop in on L'Occitane, Waterstone's and Lush. Peter wanted to call in on John Lewis and Andrew wanted to pick up a few things for his first real job as a paramedic.

We split up to do what we needed to do, well of course Peter stayed with me, and we got everything done quite quickly. Things were not as nice for me as they usually are though and I started to feel uncomfortable on my scooter. My back ached and I felt suddenly very tired. We stopped for a leisurely lunch and I began to feel a bit better. I even treated myself to a creamy cappuccino, yes I know I shouldn't really drink coffee but it was a case of 'a little of what you fancy', etc.

We had one more thing to do before leaving the shopping center and that involved going outside to the market. Despite having a coat I was soon shaking with cold and couldn't wait to get back indoors. The weather had changed too and it was now overcast with spots of rain in the air. Once back inside I couldn't stop shaking, I'd turned an alarming shade of blue and I felt so tired I could hardly sit upright. The decision was made to forget visiting the charity shops and head back home. Peter drove and I dozed in the passenger seat with my coat and a blanket over me.

Once home I was escorted upstairs and was so tired I pulled my boots off and collapsed into bed fully clothed. Peter brought up a cup of tea which I drank quickly, grateful for the warmth. I don't know quite how long I dozed but it must have been at least an hour. I lay quietly for a while trying to work out what was going on then got out of bed and changed into something more comfortable than jeans. Still tired I lay back down again but, although shattered, couldn't get back to sleep.

I was a little bit shocked at how quickly I'd gone from raring to go and being full of energy to hardly being able to keep my eyes open. Of course I have been here before. Way back in 2006/2007 when I was beginning to get the idea that something was wrong, and it wasn't just asthma. I'd arrive home around half past four. Lie down on the bed and be woken up at six by Peter asking if I wanted any tea. At the time I thought I was just over doing it. I spent five days a week constantly on my feet between the hours of eight and three teaching. Then in the evening another couple of hours would be taken up with marking. At weekends there was more marking plus all the household chores. I barely sat down even to eat.

These days I have it relatively easy. I do a job where I spend the majority of the time sitting down. It is stressful in it's own way but not physically so. I don't do housework anymore, apart from the ironing and a bit of washing up. My boys do that for me. So why the sudden overwhelming weariness? The pain in my back is familiar too, it's an indication that I just don't have the strength to hold myself up anymore. As for the cold, well PH patients do feel the cold more than 'normal' people but that was excessive.

Of course I've had all these symptoms before and have learnt that their return usually herald the need for a medication change and/or increase. The Brompton have been talking about increasing my Flolan levels for some time now, I'm on an extremely low dose at the moment, but have been putting it off until they can switch me onto the new Veveltri (spelling) that I was due to start in January. Their reasoning was to cause as little disruption to me as possible. However there is still some administrative hold up with the drug at the moment so not only have I not had that but I haven't had my increase either.

There is no guarantee that a meds increase will help. It is inevitable that my PH is going to progress and I will become worse. I already knew that. I also know that I have a quick turnover with medication and for me drugs become ineffective very quickly. Flolan has been effective longer than any drug I've taken but I, and my PH team, knew that sooner or later things would change. So the question is, is this just a blip to be solved by an increased dose or is it the beginning of the inevitable, because there is nothing else except transplant.

I have notified the Brompton of my problems and as I have an appointment with them in a couple of weeks time they will discuss things with me then. They are also hopeful they will have news on the new drug by then. In all honesty though, all I want is my transplant so I can put all this behind me. Is it really too much to ask?

As if I don't have enough to fret about I received my renewal pack for my Disability Living Allowance this weekend.

There have been lots of horror stories about people being unfairly denied benefits etc, etc. However having read all the stories I realised that the majority center around the old incapacity benefit for those who are disabled and don't work and not DLA, which is largely claimed by those still in work. To be fair I don't see why disabled people shouldn't do some sort of work. If you can type and answer a phone then why not? It will benefit the disabled person and the country. Before anyone jumps down my throat, I know there are those who are too disabled to work and of course they should be supported but lets be frank, some are just swinging the lead because they like doing nothing. And it is right that those people should be encouraged back into work.

Anyway before I get on my soap box for a good old rant, back to the problem at hand. I've heard that if you are on the transplant list they more or less just leave you alone. It stands to reason, even to the thickest bureaucrat, that you have to be pretty damned poorly in order to need major organs replacing. I'm hoping that's true because if I have to go in for a face to face assessment they'll never believe I so ill. Like most PH patients I look deceptively healthy thanks to the drugs giving my a healthy flush. I will keep you informed of progress. Be prepared for a few rants.

Sunday, 2 March 2014

Sunny Saturday Shopping.

Let's start with the bad news and get it out of the way.

The trip to the dentist didn't go as well as I had hoped. I knew, or suspected, I'd chipped a filling but was hoping the dentist wouldn't notice. She did of course so I'm back again next Friday to have the filling replaced and to have a 'deep' clean. I'm not surprised about the clean as the last dentist's idea of a clean was to rub some paste on my front teeth and say 'all done', so I'm rather pleased about that.

It was piddling down and not being able to park very close we both got very wet. We got even wetter afterwards when we went to Tesco to get our weekly groceries. However it was good to just get that chore out of the way and free up the rest of the weekend.

So what a contrast Saturday turned out to be. It was a beautiful day. Very sunny and quite warm when behind the glass of the car window. Outside there was a bit of a cool breeze but I don't think anyone cared. It was just lovely to see blue skies for a change. It's all back to normal today.

Andrew arrived home and announced he had two interviews in the next two weeks and that he needed a suit. So instead of having a quiet weekend in, we spent Saturday afternoon scouring clothing shops for something he liked and could afford. Where did he finally buy something from? Good old Asda of course. To be fair the suits in Asda were cut better and hung better than some of the more upmarket stuff and cost about a quarter of the price. He looks rather dapper don't you think. Yes the photo is awful but you get the idea.

My mood has started to keep me awake at night. I lie there for hours not being able to sleep and when I do drop off I have weird dreams. I wouldn't call them nightmares exactly but they are a bit frightening. They almost always involve transplant and this weekend in my dreams I'm in hospital and running around frantically looking for my laptop while the nurses are trying to get me back into bed so I won't burst my stitches. What the hell is that all about? I'm sure any dream analyst would have a field day, if I believed in such things.

I do feel better than I did last weekend. The little bit of good weather has helped and I have a few days booked off in the coming weeks to look forward too. Now that we are in the month when spring officially starts I'm more inclined to take time off so Peter and myself can spend some days out and about together. It will be nice to go somewhere and not freeze to death or drown.

I'm still not me though. There is something dragging me down and I just cannot put my finger on it. I don't even feel that unwell, just out of sorts and restless. I'm sure the atmosphere in work has got something to do with it though I'm not that bothered about what happens there because I have plans to move on. I can only conclude that it's because I'm in limbo and have been for a very long time now. Not knowing when things are going to change means you are always on edge. I wish I could explain it better but this is a situation only those in it can appreciate fully.

So what have I got to look forward to this week, apart from the dentist.

Well on Tuesday I have a day off and Peter and I are going out to see if we can finally find some flooring for the bathroom. Don't hold your breath. Then at the weekend we are hoping for a quiet one. We also have two people coming to see the car. One tomorrow but we are not holding out much hope with him and one on Saturday, who seems very keen. As much as I love my 156, I am fed up with it just sitting there now and I want the money to add to our holiday fund.

So I'd better go and get my stuff together for work tomorrow. Sorry I haven't been blogging so much lately. I really have struggled to do anything much these last few weeks. Hopefully Sunny Saturday saw the beginning of the positive Hazel re-emerging. At least I hope so.