You Gotta Roll With It

Yesterday was a day of ups and downs but I am glad to say I appear to be coming out of my doldrums at last.

The downer was receiving my new debit card, reading the expiry date of 2016 and realising that I'm likely to expire first. A strange feeling but one I have to get used to. Since going onto the transplant list, on 21st December 2012, 153 fellow transplant patients have died waiting. It is a sobering thought and one that has to be addressed. Starting tomorrow ITV launches it's Organ Donor Campaign and several of my fellow transplant patients will be taking part to emphasis why putting yourself up as a donor is so important. So look out for Kath and Stacie next week and please, sign up.

The ups were far more numerous. First and foremost I had both my babies with me as Laurence joined us for lunch and watched some of the rugby with me. I do love seeing them both together, it makes me feel as though I have my family back.

Then there was the shock and joy of Wales beating France in the rugby. I don't know what our neighbours thought as I jumped up and down, screaming with joy, before the PH kicked in and necessitated a quick suck on my oxygen.

The final triumph was in my baking. For the first time ever I baked a cake that didn't come out of the oven resembling a biscuit. This cake was light and fluffy and such a surprise I just stood there looking at it. It tasted even better than it looked and Peter remarked that he'd never known me to bake like this before. I'd asked for a book on successful baking for Christmas and was given one, no doubt in the faint hope I's stop giving everyone indigestion. Obviously it worked and I will be trying a different recipe next weekend.

This morning I was downstairs feeding the cats when the phone rang. 0930 in the morning would have been too early for anyone I know to ring, unless there had been a disaster, so I froze listening as Peter answered it. As he didn't come hurtling down the stairs with a look of panic on his face I concluded that the call wasn't for me and got on with the job in hand.

My reaction surprised me somewhat because up to now I've jumped every time the phone rang at an unusual time. My rather more relaxed approach is obviously better for the nerves and the blood pressure but I felt a note of sadness that I no longer 'expect' it to be Papworth. It's not that I've given up hope at all, I think it is just that I've come back down to earth and realised that the chances of getting a call is a lot less likely than I first hoped. Maybe this is a good thing as the disappointment lessens with time and you just roll with the punches.

I'm back to work tomorrow and once again not looking forward to it.

I don't know why I've become so negative towards my job recently. I used to love what I did and actually looked forward to the day but the atmosphere has changed and we are no longer the close knit little group we used to be. I am now working with a lot of people whom I don't know and who do not know me. I get stared at when I come into the room with my oxygen and, I hate to say this, but I see pity in their eyes. The people I used to work with never pitied me, they just accepted things because they walked the path with me, these new people have just walked into the situation and really don't know what to make of me.

I see curious looks and a few brave souls have asked about my condition. I don't mind this I rather they ask openly than gossip behind my back so I've answered their questions openly and honestly. What really scares me most though is that I'm working with new supervisors and I wonder how much they have been told. Do they know that I can take extra breaks if I'm unwell, not that I ever do? Do they know I have to be escorted out of the building as soon as the fire alarm goes off and not stay at my post until the last minute like everyone else? I know all this sound stupid but it makes me uncomfortable and, I have to say it, unsafe.

I'm sure things will settle down and soon everyone will know all they need to but I fear I'm in for an uncomfortable few months.

In the news the horrific story of a baby having it's fingers bitten off by a fox.

Naturally there are calls to have the fox shot and the hunting lobby are citing this as a reason to make fox hunting legal again. Well although I can understand the sentiment there is a world of difference between the urban fox and the country fox.

The urban fox has lost it's fear of humans and has grown in numbers due to the rich pickings on our city streets. Who can blame it for wanting an easy life and we encourage this by our behaviour. We litter out streets with half eaten food, mostly chips, burgers and kebabs, rather than put our rubbish into secure bins. We see these animals as cute and encourage them into our gardens by feeding them. And in extreme cases make pets out of them.

The country fox has a much harder life. It is terrified of humans, and with good reason, and has no chance of getting fat and lazy. The country fox has to live on it's wits, hunting is how it gets it's food, and then only if it is lucky. They are persecuted by farmers or anyone who keeps live stock.

So by comparison the urban fox has a much more comfortable life than it's country bumpkin cousin. The urban fox will get a better death too, not the terror of hearing dogs coming after you, or the exhaustion of running miles to escape. The urban fox will be dispatched with a quick bullet, it will not feel the pain or terror as it is ripped apart, taking minutes to die. Urban foxes need to be controlled but what has happened should not mean the the blameless country fox should also pay in the the most hideous way imaginable. 

Taking On The Big Boys

Well what a surprise! My trip to the doctor's resulted in being told I did not have a chest infection, I don't even have a wheeze so I can only conclude it is down to my PH. I'm sure the Brompton will sort me out, they always do but it is depressing to find I am going downhill again.

Talking about going downhill I've also lost weight. It is only a pound and a half but it is still a loss.

Yesterday's trip to our local Tesco was more exciting than usual.

Diving into the car park in front of us with all light blazing was a police car. As we parked up in one of the disabled bays two officers dashed into the store.

What appeared to be an elderly gent was sitting on a bench inside the store with his back towards us surrounded by security, two PCSO's and two PC's. My first thought was that he'd been assaulted or robbed so imagine my astonishment when they slapped handcuffs on him and started walking him to the police car. We met in the doorway and as he went past he was protesting his innocence rather vigorously and seemed rather the worse for wear.

Peter knows someone who works at the store and fortunately not only was she on duty but also part of the melee. She told us that this 'gentleman' had been wondering around the store having a bit of a picnic. He there decided to walk out without presenting the wrappers of the items he'd eaten for payment. He was challenged and things turned nasty, the staff were busy scouring the store for empty wrappers as when he was stopped he didn't have any on him.

After completing our shopping and failing to spot any discarded wrappings we returned home where Andrew cooked a Bulgarian treat for us. It is called Banitsa and is made up of eggs, feta cheese and filo pastry and although they looked less than appetising they tasted absolutely delicious.

Laurence is coming for lunch today so I'm cooking one of his favourites, a creamy, spicy pasta made up of fresh tomatoes, cream, chilli and salami. It is quite hot but we love it.

I had another shout at my drug delivery company yesterday afternoon.

Last month's delivery they only sent half the quantity that I'd ordered of dressing packs and substituted large gloves instead of my usual medium. I rang and complained and they promised to rectify the gloves for the next delivery and they sent out the remaining dressing packs by recorded delivery. Yesterday my order arrived minus any dressing packs and with large gloves. I can use large gloves but they have a tendency to roll back on themselves and get in the way when doing the more intricate parts of my drug change so they are not the easiest things to wear.

Every month I have to ring up and complain about something they've got wrong so I'd just about got to the end of my tether with them. Let's be real here, this is a company suppling specialised drugs and equipment to seriously ill patients so wouldn't you expect them to get it right? Of course you would, patients shouldn't be put at risk by having the wrong equipment supplied or not delivered at all. So I lost my temper and shouted at the poor woman on the phone. I felt terrible afterwards as I knew exactly how she would be feeling, but after nearly two years of constant cock ups I felt shock treatment was the only way forward. Anyway my missing items and correctly sized gloves arrived this morning. Will next month's delivery be without fault? We can only wait and see but I'm not holding my breathe.

Creamy Tomato Pasta with a Kick (serves 4)

750k of fresh, very ripe tomatoes, skinned de-seeded and chopped.
500g pasta, preferably fusili 

300g of spicy Italian sausage, or Chorizo will do, thinly sliced (this can be left out if you want the veggie version)

Small pot of single cream, approx 300ml
dried crushed chillies
butter
Parmesan
Sprig of fresh rosemary or 1 teaspoon dried. (I recommend the fresh for a better flavour)

In a deep, thick based frying pan melt a small knob of butter and fry the sausage for 3 -5 mins on a high heat until browned. Use a paper towel to remove any excess oil that this might produce (if you don't the cream will curdle). Put water on to boil. Remove sausages from heat while you remove Rosemary leaves from stalk and finely chop them, mix in with the chopped tomatoes and add to frying pan and return to medium heat. Cook until tomatoes start to break down and become mushy, about 6 - 7 mins. Add pasta to boiling water and cook for ten minutes. Turn heat under frying pan to low, add cream, about half to one teaspoon of dried chillies (depending on how hot you want it) and two tablespoons of grated Parmesan, stir well. Cook until pasta is ready and cream has thickened slightly. Drain pasta and returned to saucepan. Pour sauce over pasta and mix well. Serve with extra Parmesan and salad. Garlic bread is not recommended to accompany this dish as the flavour will clash.

Well now I've written it down I'd better go and cook it. I've had to send Andrew out because I forgot a vital ingredient, yep I forgot the cream. Dumbo.

Wearing The Face That She Keeps In A Jar By The Door

Oh for goodness sake! Why can't I just be free of infection, just for a couple of weeks.

I'm back at my GP's today as I am on my last antibiotic tablet and my chest still feels as though it is full of yuk. The worrying thing is I'm not coughing so I'm wondering whether I've actually got the old pluresy problem back again. I'll soon find out my appointment is at eleven.

My PH center had a bit of a panic when I told them what had been going on and wanted me to drop everything and go straight in 'for tests', staying overnight. Well as you can imagine that was rebuffed immediately. I know when I'm in serious trouble and something has gone wrong so didn't feel an emergency admission was necessary. I do think my Flolan needs adjusting to take in my new weight but everything else is OK. We have agreed to stick with the clinic appointment in two weeks but I've promised to get in touch if things get any worse. An uneasy compromise but there was no way I was going to spend any time in hospital unless I really needed it.

I was asked yet again yesterday whether I had a date for my operation.

To be honest I'm getting a bit sick of having to explain things. Do people really think they have organs stored away in fridges? Apparently so. Hopefully the organ donor campaign starting on Monday will educate a few people and I won't get asked anymore.

I was also asked how I did it, how do I come into work each day with a smile on my face and remain cheerful no matter what life throws at me. The question ended with 'because I couldn't do it.'

I don't think any of us know how we will react to suddenly being really ill. It is not a scenario that we can easily imagine, who wants to? If anyone had told me ten or even five years ago that I'd be relying on a machine to keep me alive and desperate for transplant I'd probably have laughed in their face because it seemed so ridiculous. Either that or I'd have made some glib remark about killing myself before then. So how have I done it? Well the easy answer is because I have no choice in the matter. I can't wake up one morning and say 'well I've had enough now, from today I'm going to be well'. Believe me I wish I could. The choices are stark. Stay at home and wallow in my misfortune or get on with living as full a life as possible and when the going gets really tough slap on an even bigger smile. Sometimes I feel like the biggest fraud ever because my outward appearance bares no resemblance to how I am feeling inside.

Recently the mask has slipped a bit and, despite protesting that I didn't need counselling, I've found it does actually help. You feel wary and a bit silly at first but getting everything out and actually having someone tell you that all the feelings of anger and fear are normal is very reassuring. My counsellor actually told me that she'd be more worried about me if I didn't go off the rails occasionally.

In the news, the horse meat scandal.

Fortunately finding horse meat in your burgers or ready meals isn't dangerous but it brings to the fore the unpleasant thought that, unless we've made these things ourselves, we don't really know what we are eating. I've long thought that relying on what the manufacturers put on the box is just what they want us to know about. My suspicions were raised when one day I read the ingredients on a ready meal while it was in the microwave and found thy only added up to 97% of what I was eating. I still wonder what was in the outstanding 3%. Since then I've relied less on shop bought stuff and made things myself. I much prefer to make a massive lasagna and freeze half into individual portions than by ready made. Where I can I make up my own sauce too.

There are no health reasons to worry about eating horse meat, I'm sure all the proper safety precautions were taken with horse as for beef, lamb or poultry. What worries me is the breaking of trust. If horse meat gets through what else is being put into our food that we don't know about. Also by not telling me what is in a product I am being denied a choice. I might well still choose to eat a burger with a small proportion of horse in it but I don't want to do so in ignorance, I want the choice to be mine.

Well my student paramedic is home and demanding food so I'd better go.

Now is the Winter of our Discontent

It has been a pretty dire few days.

Thanks to all who continue to offer support and advice, you are all correct when you say it does help to know you are not alone.

Yesterday I decided to stop wallowing in misery at home and take myself off to wallow at work instead. And just as I'd hoped my work colleagues soon had the smile back on my face. It did help that the antibiotics are doing their job and I am feeling physically much better. There is another reason I'm glad I went in as I had a meeting with Welfare on Tuesday morning.

These little counselling sessions really help and this one arrived at just the right time. I was able to discuss my fears and frustrations without being judged and I was given some very helpful advice on how to deal with certain things that were getting me down. As a result I feel in a lighter mood today. I wouldn't say exactly positive but lighter. I've booked in for a few more at weekly intervals, I think I need the extra support at the moment and as it is on offer I may as well take it, especially as the lady I see is so lovely.

It has been really cold here and we did have a snow flurry or two yesterday afternoon but now it is just cold and windy. Horrible.

I have something to look forward too this weekend, both my boys will be around the dining table this Saturday as Laurence is coming down for a visit. He has two weeks off as he is trying to use up his leave so with a bit of luck I'll see him next weekend as well.

Andrew has passed all his first term exams and seems to be really enjoying this term as there is a lot more in depth stuff to get to grips with. He is learning to read ECG's so when I go to the Brompton in two weeks I'll see if I can get a copy of mine when  I was in AF. He'll have fun interpreting that!

Mercifully my weight remains stable, nothing on but nothing off either and I think this might be a clue to my current breathing problems.

My drug is administered by weight, so the heavier you are the more you get. When I started the drug and until just after Christmas my weight was at least two kilos less, possibly three, so technically I'm getting a smaller dose that I should be. I have contacted my PH center and they say it is a possibility but they will need to check me over to make sure there isn't something else lurking before considering that. There is a reluctance to increase my dose on both sides, me because I really don't want to go through all the sickness again and them because my increased weight might well be temporary. If I lose weight again I could end up getting too much and being very ill indeed. We will discuss this in two weeks and make a decision on whether to take a chance and go with an increase or leave it for another couple of weeks and see how it goes.

Dancing On Ice Watch

I'm afraid to say I have now abandoned this so there will be no further reports.


In the news.

Well, well, well the body in the car park is probably that of Richard III after all. I say probably because we can never be 100% sure.

How thrilling. I've always had a bit of a soft spot for old Richard. Only two years on the throne and a reputation ruined by Tudors who still saw him as a threat long after he was dead and buried. Richard has fascinated me since childhood when I, along with every other child in Britain, was fed the fiction of the two princes in the tower, a rumour which was seemly supported by the discovery of two skeletons found under a staircase. However how the princes died remains an unsolved mystery and so the blame was put squarely onto Richard's shoulders without any evidence to support it above and beyond that he only got the crown because they were to young to rule.

Having been beaten in the battle of Bosworth by Henry VII the Tudors wasted no time in discrediting Richard, aided and abetted by various 'historians' and play-writes, most notably William Shakespeare, who wrote a whole play about how awful Richard was.

Another set of historians paint a different picture of the last medieval king, one that is deemed to be more accurate these days than the character assassination of the Tudor era. Richard was far from being a cripple, he was also a loving uncle and a good husband. It just goes to show, maybe we shouldn't believe everything that history tells us.

Well time for a cuppa and a chill out in front of the TV, one of the benefits of finishing at four instead of six, proper chill out time after work. Next blog Friday.

Never Give In, Never Surrender

Another day, another downer but the kind comments, e mails and FB posts I received following my blog yesterday makes me realise I'm not alone and you all have my back during the bad times. Thank you all for just being there.

As you can probably tell I'm not at work today. I did try and spent yesterday evening preparing by ironing my uniform, making up my packed lunch and checking I had change for the chocolate machine. However when the alarm went just before six this morning my mind went 'come on into the shower and then we'll assess how you are doing', while my body went 'no way, are you mad? I'm staying put'. Today the body won as try as I might I just could not get out of bed. Aside from feeling pretty miserable about yet another set back, and of course the infection itself, I'd had a really bad night. For a start I just could not get warm and ended up getting up around one to put on my dressing gown and some old rugby socks. It helped but not by much and I snuggled as close as I could to Peter for some warmth. He responded by throwing the covers off because he was over heating, sometimes you just can't win. After a fitful couple of hours I was suddenly wide awake at 03.44 precisely. I have no idea what woke my but I can say that, disappointingly, it wasn't the phone. Trying to get back to sleep after that was hopeless so I just lay there listening to the stereo purring of Tarmac and Smirnoff as they forgot their differences for once and slept soundly at my feet.

To be honest today is more about looking after my mental health rather than the physical, which does seem to have improved since Saturday. I just couldn't face dealing with other peoples problems or my little tag team today.

The trouble with an illness like PH is that everyone tends to focus on what it is doing to your body whilst forgetting completely the effect it has on your mind. Living with a terminal illness is stressful.

Everyone has stresses in their lives, we worry about our jobs, money, our kids and a million other little things that make up life. For someone with a serious illness you have all that plus all the additional stress being ill can bring. First you have to deal with being told you are dying. Then there are all the meds to get used to, the gradual but relentless changes to your lifestyle, the humiliation of having to carry machinery around with you, just to stay alive. You worry about how you will die, will it be quick or long drawn out and painful, you worry about how your family will cope without you. Then you worry about letting people down when you can't make it into work, holidays or visit to the cinema have to be cancelled at short notice. And all the time your world is shrinking around you.

Regular blog readers will know that 2012 was a particularly stressful time for me, November and December were particularly bad. Not only did I end up in Papworth on my birthday for transplant assessment but I also had a cancer scare that resulted in surgery and a wait for the all clear. Then there was the bout of flu and accompanying chest infection that rendered me bedridden for most of December. I recovered just in time to go into work on Christmas Day and then I was thrown into the busiest Christmas ever all the time jumping when the phone went and praying it was 'the call'.

2013 has started with stresses of it's own. There's the change in shift patterns at work, though admittedly it has worked out better for me than I expected and I quite like the shorter days. And then there is the stress of being 'on the list'.

When you first get put on the list you are convinced that the call will come almost before you leave hospital then as the days and weeks pass reality dawns that you could be in for a really long wait. Every time the phone rings at a time you don't expect it too, i.e. late at night or early on a weekend you jump thinking this might be it only to have a tiny piece of hope chipped away when it turns out to be another marketing call.

So is it any wonder that sometimes it all gets too much and you just want to shut out the world and wallow in your misery for a while. Someone said that I must remember that tomorrow is another day and I'll feel so much better. Yes but I could also feel so much worse.

One thing I do know is that I will get my mojo back, it could be tomorrow, it could be next week but it will come and when it does I'll get back on that horse and face down my problems because I don't give in.

Living On Borrowed Time

I'm having a really down day so please bear with me.

Well I 'd like to start this blog by saying I feel better but unfortunately it is not the case. I felt so rough last night I dived into my emergency antibiotic supply. Fortunately I had a good night's sleep and I did wake feeling better until I started moving around. I have say my breathing is slightly better but I still feel 'under the weather'. Will I make it to work tomorrow, I genuinely do not know at this point, but if I haven't improved by this evening I think I'm going to have to give it a miss and take myself off the the doctor Monday morning.

I can't say I'm surprised I've picked something else up, there are still a lot of nasty things circulating and a lot more people to catch them off. No matter how careful I am about cleaning my desk and chair every morning or constantly washing my hands with antibac gel I can't filter the bugs out of the air I breathe. I must admit the thought of being ill again is depressing and frustrating but I have to be grateful that I'm still here, a lot of my PH friends are not anymore. And I am painfully aware that my time is fast running out.

When originally diagnosed back in 2007 my PH was so advanced, having been poo-pooed by my local hospital as Asthma, I was told my prognoses was very poor and I had two maybe three years. I made it to my prognoses and passed it with flying colours but this of course means I am now very much on borrowed time. Every illness, every small cough or serious infection shortens my life. Maybe not by much but when you are in my position every minute is precious. One day one of these infections will kill me. This is not me being melodramatic, this is a fact, that is if my heart doesn't give in under the strain of PH first. So each infection is a threat and should be taken seriously. Now those of you who have known me since diagnoses or who read my blog regularly know I've been rather cavalier about such things in the past and have berated me roundly for it. Rest assured this is not going to be the case this time. For one thing I just do not have the energy to try and brush things off anymore. I'm tired of fighting. Every day is such a struggle and I just can't do it anymore, I just can't. What is the point of being relentlessly cheerful and optimistic when all you are doing is fooling yourself that it will be OK in the end. The reality is that for thousands of people it isn't OK in the end and they die so why should I think it will be any different for me?

So it is another day in front of the TV watching complete crap and wishing I was anyone but me. Sorry if this blog has upset you but sometimes I just have to get things off my chest and tell it as it is.

These Things Are Sent To Try Us

Yesterday turned into a bit of a drama so it is no surprise that I'm feeling a little under the weather today.

It started so well, walked into my Warfarin clinic to find only five people waiting, I was in and out in twenty minutes and heading for Tesco, where it all went spectacularly wrong.

Coming around the roundabout into the Tesco car park my car suddenly started hooting at me and the engine overheat light came on. At the same moment steam started pouring from under the bonnet so Peter pulled up at the nearest parking bay and switched off. We got out and gingerly lifted the bonnet. To our dismay the pipe leading from the water tank to the engine had split and I had dumped several pints of water and anti freeze all over the road. Deciding there was nothing we could do there and then we went off to do our shopping whilst everything cooled down.

Once shopping was done we headed back to the car armed with several bottles of Tesco everyday value water (17p for two litres) and open the bonnet again. Being the genius he is with cars Peter managed to make an emergency repair and we refilled the water tank, keeping a couple of bottles in reserve, and started her up. The repair held and we made it home stopping off to buy a new pipe on the way. Peter is busy fitting it as I'm typing this.

After a quick lunch we then headed out in his car to Milton Keynes as he needed to pick something up from the market to help with the repair and I had a couple of books to return to Waterstones after mistakingly buying two I'd already had. To save time, as Andrew was coming home for the weekend, we split up and agreed to phone each other when our tasks were completed. BIG, BIG mistake. Driving past Hotel Chocolat I saw a display of kirsch cherries in dark chocolate my absolute favourite and just couldn't go past them. Five minutes later with a pot bought I headed for our agreed meeting point and dug in while waiting for Peter to arrive.

I have to say I am an absolute pig with these little round morsels of heaven and found I'd eaten a quarter of the pot without thinking. Now I am hyper-sensitive to alcohol and to my horror I realised I was feeling rather relaxed. Thank goodness Peter arrived before I could demolish anymore other wise I could have been charged with being drunk in charge of a Travelscoot.

Arriving home we found Andrew waiting on the doorstep, he'd forgotten his key and had been loitering for about an hour. He helped us unpack and then I was left alone, in front of the TV, with the cherries. Lets just say I had a very mellow, if slightly queasy, afternoon that won't be repeated anytime soon.

This morning good old PH has reared it's ugly head and chosen to remind me why I'm on the transplant list. Even the few feet from bed to bathroom has me puffing and blowing like a steam engine and I feel totally drained. It could be the result of a busy week and a stress filled day yesterday or it could be the start of yet another infection, this is getting beyond a joke now, or it could just be one of those days. Whichever I just wish it would bugger off and leave me alone, excuse my language. These are the days I pray for the call because I don't know how many more of these 'off' days I can stand. If I'm still bad tomorrow I'll break open my antibiotic supply and book myself in with the doctor on Monday. It'll mean a day off work at least but I doubt I'll be missed, there are so many of us these days.

So it is going to be a day tied to my oxygen and flopped in front of the TV. At least I have the first of the Six Nations rugby tournament to watch so that will be good, however Wales haven't been playing well recently so I fear another disappointment will follow a stressful couple of hours.

One thing I will not be doing is watching Casualty with Andrew. Now he has some medical knowledge he ruins shows like this by pointing out all the bloopers only a medic would spot. This is fine but I wish he'd keep them to himself and let me enjoy the fantasy. Holby City showed a heart transplant recently where the patient was sitting up in bed fuly lucid and chatting away to the surgeon with only a drip in her arm only hours post surgery. I'm not stupid and I know this is not what happens but it is nice to imagine it could, even for an hour.

It has been all go for two of my fellow PH suffers and transplant buddies this week.

Stacie, link to blog is on the listing to the right of this post, has been interview by Daybreak as part of their campaign for more organ donors. I delighted she managed to put a case for us PH suffers and am so looking forward to seeing it. Well done Stacie and a great big thank you for taking time out to help all of us.

Kath, blog also in the listings on the right, is marking 500 days waiting for transplant. It is a sobering thought that during the time Kath has been waiting 1500 people have died due to lack of donors. If you do nothing else today please, please, please sign up to be an organ donor and don't forget to tell your family, as they will be the ones who have the final say.  www.nhsbt.nhs.uk/

Well I'm off to prepared for the Rugby, come on Wales, give me something to smile about this weekend, please.