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.

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.

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.

Equilibrium

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.

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.

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.

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.