Tuesday, 28 February 2012

Are Cars Electric?

Peter has blown a gasket. Well to be more specific his car has and it is the head gasket, no me neither. As a result I haven't seen much of him over the last two days as he's been glued under the bonnet dismantling the engine to see exactly how big the problem is. He is confident that he can fix it himself if it is a simple straight forward thing and the head hasn't warped, no, no idea what that means either. So once again my hall way is full of smelly car parts and tools, into each life a little oil must fall.

Andrew managed to injure himself at karate last night. This time it is his elbow, nothing broken but the end is very swollen and it is painful to bend. I knew something was up when he came in and headed straight for the freezer for ice. Not great timing as he is taking his driving test today. The elbow is better today but he has put a cotton support on it just in case.

Talking about cars, I have started looking into getting a Motability car. My beloved Alfa is still going strong but it is getting on a bit now and Peter is worried about reliability. So far, touch wood, it has never mechanically let me down. I've had flat tires, failed lights and windscreen wipers but it has never failed me mechanically. The advantages of getting a car through the motability scheme is that everything is covered, insurance, servicing, repairs all covered by one weekly payment, and you get a brand new car every three years. What is making me hesitate is the love of my current car and the transplant situation. If I was lucky enough to get a transplant this year would I have to give the motability car back, leaving me without a car at all? Or would I be able to keep the car for the full three years giving me plenty of time to find a replacement. I've heard that transplant patients are not allowed to use public transport because of the risk of infection and are therefore still entitled to use the motability scheme. Unfortunately I cannot find out if this is true or not, there is nothing on the DWP website or the motability website to advise you. I am reluctant to ring the DWP up with the question because knowing them they'll think I'm notifying them of a transplant and start changing things around. There is no hurry so I will take my time and think about it and see if I can find some answers before taking the plunge.

Health wise I seem to be stuck at an impasse. I'm not going backwards but I'm not making much progress forwards either. It is very frustrating. I am totally fed up with the situation now, not to mention having to drag this bloody machine around with me everywhere and, of course, my crap lungs. I try not to moan about it all. I see reports of children with cancer and much worse things and feel guilty about moaning about my lot. Then there are other times when I read about someone moaning because they feel everyone is against them and life is 'unfair' and I wonder why I don't moan more. After all if anyone has got something to moan about it is me, isn't it? I guess the answer is that there are some natural born moaners in this world and I'm not one of them.

Andrew passed his driving test with only three minors, don't ask me what minors are, when I took my test you passed or failed. He did it after only twenty six hours of lessons so pretty good. I am very proud of him and also very relieved as I no longer have to pay £21 per hour for lessons. Phew!

Sunday, 26 February 2012

Oh I Say!

Yes I have changed the name of my blog. A quick Google search showed an awful lot of Hazel's Blogs so, in order to stand out from the crowd and make my blog easier to find, I've added a descriptive title.

I was thrilled by the result of the England/Wales match from Twickenham, I actually jumped up from the settee and yelled when the Welsh try was scored.. Can't help feeling a little sorry for the England team though, it was really close. In fairness that last try really couldn't have been safely awarded because no matter which angle you looked at it you really couldn't tell. Having said that if it had happened the other way around the newspapers would have been screaming about a fair English win rather than bleating that the ref had 'got it wrong' this morning.

I'm finally feeling better. That leaden feeling at the bottom of my rib cage has gone though my chest still feels pretty raw. I've stopped coughing up gunk, which is a huge relief, and I no longer need my oxygen. I felt absolutely dreadful on Friday and not so hot yesterday so waking up feeling so good today is a big surprise as well as a joy. I just hope it isn't a one off and I continue to improve from now on.

We had a disaster this afternoon. When making the bed Peter managed to split the bed sheet. In fairness it had been threatening to go every since one of the boys managed to shrink it in the wash when I was in hospital last summer. It's twin had already bitten the dust when it got caught on a rose bush while drying on a windy day and was shredded. After a quick ring around we located a sheet of similar colour, fabric and quality in a store in Bedford but they only had the one. So we asked them to put it aside and Peter offered to go along and get it. As it was nice weather I felt up to going along for the ride and we were soon parked outside the store. Not feeling like walking around and also because I looked a bit of a scruff in my 'around the house' casuals I waited in the car while Peter popped in to pick up our new sheet. As I was waiting I noticed a young woman approaching, there was nothing really remarkable about her until she had passed me and I got a rear view. She was one of our larger ladies, well quite a bit larger to be honest, and she'd squeezed herself into a tiny mini skirt that left absolutely nothing to the imagination, including the colour of the knickers she was wearing. I am absolutely sure my jaw dropped involuntarily and I caught myself staring. My reaction was nothing to the two blokes who were following her however, they were so helpless with laughter they could hardly stand. Poor girl. Didn't she check her back view in a mirror before going out? What about her family, didn't they warn her? And what about the friend she was with, couldn't she have found a way of sparing her blushes? Sometimes people are their own worst enemies, they really are.

My sick note runs out tomorrow and the debate is on as to whether I get another one. I'm not due in work again until Friday and, who knows, I could be fit as a fiddle by then. On the other hand progress seems very much slower this time around and I can't be sure another four days will make such a big difference. As much as it pains me to do so I think I'm going to have to ask for another week, if for no other reason than to make sure I don't suffer a relapse. It'll also ensure I avoid all the nasty bugs floating around at work until I'm in a better state to deal with them. I've been given some meds to boost my immune system but they take up to three weeks before having any real effect. Maybe I'll do the wise thing for a change and give the meds and my body a chance.

Saturday, 25 February 2012

When You Are Down You Are Down

I am watching for news on one of my fellow PH sufferers who is very poorly at the moment.

Miriam has been a bit of a rock to me over the last few years. She was one of the first to extend that hand of friendship and support when I joined the PHA website just after being diagnosed. She answered all my questions, gave me advice, even when I didn't want it, and was just there for me. It was Miriam who supported me through the grief when I realised all the things I loved doing, from teaching to taking a Sunday stroll across the fields near my home, would soon be beyond my reach. It was Miriam who remained by my side when the anger hit and I lashed out at everyone, just wanting to hurt as much as I was hurting. She was one of the few who kept talking me through it when others wouldn't or couldn't understand. Now the news has come that Miriam is very, very ill and I feel helpless, frustrated and angry that this disease is just marching it's way through people I care for. Hopefully it will prove to be just a blip and Miriam will pull through. Thinking of you Miriam.

It has been a depressing couple of days. I improved in leaps and bounds for the first few days after coming out of hospital but since Wednesday I seem to have come to a halt. I cannot get over the 250 mark on the peak flow meter for love nor money and I feel 'ill'. My breathing has improved, there is no doubt about it but I feel that everything is far to much effort and I'm off my food. My chest aches, probably from all the coughing I've done and feels heavy and sore. I still bring up the odd bit of gunk but nothing like I was doing in the first few days. Despite that and the reassurances of the hospital that there is no infection I feel as though I might have one. I have decided that if I don't improve over the weekend I'll go and see my GP on Monday just to make sure something hasn't developed since I left hospital, after all anything can happen in a week. I'm also going to contact my clinical team and let them know that I've ground to a halt. They might be able to suggest something, such as an increase in the steroids, that will kick start the recovery again. On a more positive side I received an e mail from the hospital yesterday to tell me my iron count was 'in range' so I can stop taking the iron tablets. Thank goodness for that, at least now I can strike chronic indigestion off my list of ailments.

This afternoon it is the clash that every Welsh/English rugby fan looks forward too with a mixture of hope and dread. I would say it is even stevens for today's match as Wales have been playing well and England are not truly on form at the moment. Whatever the result it will be nice to have something to take my mind off things, though expect a deep trough of depression if Wales loses.

Thursday, 23 February 2012

Cooking Up A Storm

Drat! I've lost weight again and am virtually back to square one, that's hospital food for you. In all fairness when you are finding it hard to breath eating comes quiet low in your list of priorities. I am slowly improving and I'm sure I'll be able to return to my Mars Bar, Crisps and Cake diet pretty soon. In the meantime I'm back on the protein shakes which I still have a good supply of from last time.

We had a great time on Tuesday when Laurence called around, I did manage, with help, to prepare a meal which was wolfed down almost before the plate hit the table. It seems, even though I passed on all my recipes, there is still nothing like a meal cooked by your mother. He proudly announced that he is doing most of his own cooking and has managed to avoid falling back on takeaways, I'm really pleased at this as I thought a healthy diet would be the first thing to get overlooked. Laurence seems really contented and happy with his new house and is gradually getting it sorted the way he wants it. He took his lawn mower and strimmer away with him so I think the back garden is about to get some attention. Now we only have his patio chairs and his barbecue to look after.

I did not make it to Tesco's yesterday. Part of the reason was that it was raining and Peter having to get me into a wheelchair, sort out my oxygen and attach one of those wheelchair trolleys to me in the middle of a down pour was not an attractive proposition. The other part of it is, that although I don't mind so much being seen in a wheelchair these days, I uncomfortable being in a wheelchair with oxygen. So Peter and Andrew went clutching a list. Surprisingly they came back with only one addition to the list, a pack of Haribo Tangtastics for me. I could grumble at that and spent the rest of the afternoon happily sucking on the sour/sweet flavours.

Andrew had his penultimate driving lesson before his test next Tuesday. He and his instructor are confident of success but I'm trying to urge a little bit of caution into Andrew as I think over confidence is dangerous when it comes to driving tests. Don't get me wrong, I really hope he passes as for one thing my bank account will heave a sigh of relief. However I know from experience the more you expect to pass the bigger the disappointment when you don't.

Masterchef was on last night, I love this programme though some of the concoctions they come up with can be a bit stomach churning to say the least. Last night did not disappoint with one contestant offering up chocolate and black olive tarts. Eww! I do not like olives at the best of times but with chocolate? Another served up Miso ice cream. I like Miso soup but cannot imagine it as an ice cream, yuk! The creator of this particular dish got her marching orders and quite rightly too, the only mystery being how she lasted so long.

Another programme I watched last night, partly out of curiosity and partly out of boredom, was Big Body Squad. This programme was about the people whose job it is to shift around the overweight. I'm not talking about mildly tubby, these people weighed in at fifty stone or more. It was jaw dropping stuff, not just because of the costs involved in looking after these people but in the way no one seemed to think it abnormal. I am not the most sympathetic of people when it comes to illnesses brought on by self abuse such as smoking, drinking or overeating but I did feel a sort of pity as I watched a variety of blubber mountains struggling with heart problems and breathing difficulties. The saddest section of all featured a twenty seven year old woman, her weight was the same as her age. Once again I was forced to wonder how on earth they let themselves get into that state in the first place. It is a complete mystery to me and one that is destined to remain so I'm afraid. One thing I do know, I won't be watching again.


Tuesday, 21 February 2012

Keeping It To Yourself

I am continuing to improve but very slowly and I seem to be sleeping more than usual. I hope that is because I didn't sleep much when really poorly and not a side effect of the new meds. My days are still spent mostly lying on the settee watching TV or using my laptop and it is very frustrating as I can see loads of little jobs that need doing that men don't even seem to notice. Arrgghh! I did manage to do some ironing though so at least my men won't be walking around all rumpled.

I'm under strict instructions to stay home until my peak flows are consistently over 300, at the moment they fluctuate between 210 and 250 depending on the time of day. I seem more breathless in the mornings and get higher readings in the afternoons before dipping down again at bed time. I suspect this it because of the timing of the new meds and I dip just before the next dose. Still the readings are much better than the first attempts when the highest I got was 170.

Laurence is paying a visit today and thankfully I think I'm well enough to cook him one of his favourite meals. I'll do all the prep sitting down and get Andrew to help with the actual cooking. It was going to be pancakes but Laurence is not fond of them so I'll save that treat for Wednesday.

Peter has been busy on my behalf. Just before I fell ill the thermostat on my car failed. Being an Alfa Romeo the garage wanted several hundred pounds to fix it. A trawl of the Internet found the part for £45 and Peter fitted it himself. Sometimes it is handy being married to a car nut.

I was watching the local news yesterday and my attention was caught up by a sad and rather shocking story about a teenage girl who died after collapsing with chest pains and shortness of breath. Nothing much unusual there you might think, this happens every day, Asthma being the main cause. What drew my interest was when they interviewed the mother. I couldn't believe my ears when she said 'it is difficult to keep track of all your children's illnesses.' Maybe it is difficult logging every cough and cold but serious illness is usually easier to remember, especially if surgery was involved. It turns out this girl had been born with holes in her heart which were fixed but left her with a serious underlying condition.  This condition was never discussed with the family because, believing she has been cured, follow up appointments meant to pin point any underlying problems she might have had were missed.

Fifteen years later the girl was taken to a  health center with a badly sprained ankle. While she was there she complained of shortness of breath and chest pain but she and whoever was with her failed to mention her past heart history to the staff  because they though they would 'know about it'. As a result the medics put the breathlessness down as being part of the cold she was recovering from and discharged her. I personally would have mentioned the medical history several times and to several people just to make sure they got the point. However the staff must have asked the girl and whoever was with her whether she had any heart/lung problems in the past, in my experience they always get a run down of your medical history before doing anything to you. If these people chose not to fill in the details that's their problem. All in all at least part, if not all, of the responsibility for this sad death lies with the family for not alerting the medics to her medical history. The medics cannot treat what they do not know about. Thankfully the coroner decided that the health professionals were not at fault and could not have predicted this girl's death from the information they were given at the time. Although I feel sorry for the loss at such a young age it may never have happened if mum had remembered about her daughter's heart condition and/or had bothered to tell the medics about it.

Tomorrow, if I well enough, we just have to go to Tesco's.Something to look forward to I guess and at least it will get me out of the house and into the fresh air.

Sunday, 19 February 2012

Community First Responder

Had a blissful nights sleep in my own bed without oxygen and didn't wake myself up gasping for air, brilliant! This drug is obviously working because I've started to get rid of a lot of gunk and after each coughing session my breathing gets a little bit easier. It is obvious though that this is not going to be a quick fix but slow and steady progress. I was hoping to return to work later this week but realistically I don't think that is going to happen. Funnily enough I don't mind, I had a big enough scare not to take any risks by rushing things, and considering the amount of bugs floating around the office it is probably best I don't expose myself until I've got things under control.

This was my first experience of having to prepare my drugs and change my line in a hospital and to say it was fraught would be an understatement. I've already written about how my ward mates left a bit to be desired, well one old woman, who was clearly suffering some sort of mental health problem, was the main cause for a less than relaxed time. The first night I moved from HDU she decided to draw the curtains back from around me when I was in the process of changing my line. There I was in my bra, in sterile gloves sitting in the middle of the ward surrounded by visitors including a couple of men and unable to touch anything. Fortunately a nurse walked onto the ward at that moment and spared my blushes by whipping the curtain back into place. She explained to the daft old bat that she was to leave the curtains until I pulled them back and calm was restored. The second night I pulled the curtains around me to change my line and was just setting everything up when the curtains were grabbed back and the woman started to scream at me that I was to leave the curtains alone and how dare I pull them around without asking her. In no mood for an argument I got one of the nurses and battle commenced. The daft old bat wanted me off the ward and said if I wanted to do that sort of thing I should book a private room, as if I WANT to have to change my line every night. The nurse was really good and explained once again that it was something I had to do in private and, no, I couldn't rent a room to do it in and why should I when pulling the curtains around normally gave me all the privacy I want. In the end the nurse had to stay on the ward for the whole time it took me to get things done. If I had stayed a third night I would have asked for use of the treatment room, it is certainly something I'll be asking for next time I go in.

The nurse took me aside afterward and explained that this old woman was in fact much better than she had been. In previous weeks she had been getting into bed with other patients or getting into their beds when they went to the loo. She has also attacked visitors that she doesn't like the look of and been found wandering around other wards. Although I sympathised it didn't really make me feel any better about what happened. I was really glad I was allowed home because I hate to think what she'd try and do next.

Andrew passed his Community First Responder course and is now qualified to use a defibrillator amongst other things. We have taken pictures of him in his jacket and he looks so young, indeed he was the youngest on the course and in fact one of the youngest volunteers they've ever had. I suspect he'll bowl up and people will refuse to believe he's qualified. He will be riding out on a twelve hour shift with an ambulance crew either next weekend or the weekend after and then he will be officially on call evenings and weekends. He knows he's going to see some horrible sights but if he wants to be a paramedic he's got to get used to horrible sights and horrible people so it is going to be good experience for him. Until he passes his driving test, hopefully at the end of this month, and we can find a reasonable insurance quote for him, Peter and I have also volunteered, as his drivers.

In the news I've been reminded of a story that broke a little while ago but for some reason passed me by at the time. This is the story of a couple who won ten million on the lottery but are still claiming their £500 DLA and are driving around in a motability car. Now quite rightly, when challenged, this couple state that they worked and paid taxes all their lives until the husband became ill, I forget with what, and that they are only claiming what they are entitled too. Fair enough but we are not really talking about legal rights here, we are talking morals. If I won a large amount on the lottery I would no longer claim DLA because I am mindful of all those people who rely on DLA to live on and I'd rather my money went to someone who really needed it. Too keep claiming benefits no matter how entitled you may be when you don't need it is pure selfishness. It is the same with those who win big but hang onto their jobs. Again legally nothing wrong but if you've got a couple of million sitting in your bank account why deprive someone else of a much needed weekly wage? The argument is that they wouldn't know how to fill the day if they didn't work, fare enough but how about charity work? There are thousands of organisations out there that are crying out for volunteers, pick one and get on with it. Or why not use the money to go traveling? As for the couple, well maybe the outcry has made them reconsider their position, I hope so. One thing it must not do though is make DLA means tested. The whole point of DLA is to help disabled people live as normal a life as possible. This often costs a lot of money as special equipment is not cheap and neither is hiring someone to clean your house when you are unable to do it yourself. DLA is to cover the extra expenses disabled people often find themselves facing, not to prop up the bank accounts of millionaires.

The cats cannot decide whether they are pleased to see me or whether I should be punished for leaving them. At the moment I am getting cuddles only when they want them. If I pick them up for a cuddle I get growled at. Goodness knows what reception I'll get after transplant when I'll be missing for up to six weeks.

Friday, 17 February 2012

A Plan Is In Place

Well last night's offering was billed as 'luxury moussaka', not sure where the luxury bit comes in but there you go. Presentation left a bit to be desired, it looked like it had been dropped on to the plate from a great height. Masterchef it was not. Today's offerings have been fine so far, which has almost been disappointing.

I gave everyone a bit of a scare last night, including me. I woke up suddenly unable to breathe and gasping. My lungs felt as thought they were full of water and my sats were down to 60% on oxygen. The on call docter turned up and put me on a nebulizer and increased my oxygen, within twenty minutes I was fine and have remained so. No idea what happened but for once I was glad I was in hospital. I was not so glad a couple of hours later when it took three attempts to get a canula in ready for the CT scan.

The CT came back clear apart from some scarring and residue pockets of mucus from old infections. The current thinking now is that the recurring infections have irritated my lungs so much that I need help damping the inflamation down. Cue some new steroids. I should start to feel better within thirty minutes of taking them but have been warned it will take up to six weeks to dampen things down completely so I will have to take them consistantly for that period of time. Thank goodness it was nothing that couldn't be fixed. And the best news, if I respond well I could be home tomorrow.

There has been a bit of a change over of my ward mates but unfortunately the most irritating ones have remained but are leaving me more or less alone. There has been a change in the nursing staff so Little Miss B.O. was not on duty. My nurse today was really lovely, I hope she is on again tomorrow.

I'm currently waiting for dinner and guess who cannot remember what she ordered. I suspect I might have gone veggie but will have to wait and see, hopefully it will be the last dinner I have in here for a while so whatever it is I can put up with it.

Fingers crossed that tomorrow's blog will be posted from home.

Thursday, 16 February 2012

Ruling Things Out

Having established that the Flolan hadn't stopped working calm was restored and I was transfered to a normal ward. Unfortunately for me it is a ward full of nosy, loud women so I've been reduced to wearing my headphones even when I'm not listening to anything just to have some peace. It is not the ward I'm usually on and the nurses clearly don't understand PH patients. They seem totally gob smacked that I administer all my drugs, including the flolan, myself. I have a feeling I'll be having an audience when I do my prep this evening.

All the tests so far have come back clear including the x ray so infection and Flolan not working have both been ruled out, so it is on to the CT scan to check for clots. If that also comes back clear then there is only one obvious answer, I've developed sensitivity to the flolan. This happened with the Iloprost before it stopped working and I developed severe asthma symptons and a rash. I have the asthma symptoms but not the rash, yet. Naturally this is going to cause a few problems because they can't take me off it, I would die within days. And there is nothing else they can give instead. The consultant has said that if this proves the case they might actually lower my dose a bit and use other drugs to dampen the irritation. I'm not sure what this means but it sounds like I'm about to be given an armful of new drugs to take home. Who'd have thought blood clots on the lung would look like the more attractive option? There is an upside to this however, and that is my transplant will become even more urgent as they won't be able to control the irritation for ever. So I'm now waiting to hear about the CT scan, they are hoping to fit it in today, otherwise it will be first thing tomorrow. I would prefer it today as the sooner they start some sort of treatment the sooner I can get out of here.

My companions, all except one who was in hospital with me the last time I was in, are an irritating lot. I use my mobile to send texts to my family to keep them updated and I keep it on silent. This lot have phones ringing constantly and all conversations are carried out at top volume. The woman next to me actually pulled one of my headphones out to talk to me. I'm afraid I was rather rude to her but at least she is now leaving me alone.

The nurse looking after my bay is a locum, is rather disorganised and I hate to say it, needs a bath. She nearly gassed me when doing my blood pressure. She started to 'clerk' me but then went for lunch and has not been near me since and the form is only half done. I had to get out of bed and retrieve my notes which she left on someone else's bed, I had a bloody good read of them and was horrified to find that the consultant at the Leathal and Deadly in a letter to my GP initially put my shortness of breathe down to my 'bra being too tight'. I couldn't believe it, I read it twice. He also, in a later letter, described me as 'overly concerned for her own health' and a time waster. This was all a couple of months before I collapsed in class and he finally conceeded something was wrong and referred me to Harefield for further tests, I was diagnosed with PH a month later. I really wish I'd know this at the time, I would have sued the pants of him, and I can't help wondering if I'd be in the state I am now if he'd taken me seriously from the beginning.

Thankfully the Brompton is very open with their information and there was nothing in their notes that I didn't already know. I know I'm going to fume about this for a while but at the end of the day life, certainly my life, is too short to dwell on 'if's' and 'maybe's'. And it is certainly too short to waste any time on a consultant who clearly doesn't know his arse from his elbow.

The food seems to have improved a bit since I was last in, either that or I'd remembered it as worse than it actually was. One thing that has definitely changed is the breakfasts, now there is a choice of a cooked breakfast as well as a range of cereals, toast and muffins. I had scrambled egg on toast this morning as I'm still trying to bump up the weight and a veggie quiche for lunch. Last night because I was late in I didn't have a choice and a lamb curry was dumped in front of me. Let's just say if you are ever in the Brompton it is one to avoid. I had indigestion all night. I can't actually remember what I ordered for tonight, it will be a nice surprise, or not.

Wednesday, 15 February 2012

High Anxiety

Things have taken a downward turn over the last few days. My breathing is severely compromised, even on oxygen and this time it isn't down to a chest infection. I had similar symptoms about seven months ago when the drug I was on then, Iloprost, just suddenly stopped working for me. Obviously I am now terrified that the Flolan is going the same way. Logically there are two things they can do, increase the dose in the hope it is the amount I'm getting and not just the drug I am getting used to, or find something else, which will be tricky as there is nothing else. What scares me most is that unless I can be stablised the transplant if off as they won't do it if my heart starts to fail as I'll never make it through the surgery. Needless to say I am very down and very scared at the moment. I e-mailed my specialist nurse first thing this morning in the hope he will arrange to see me quickly, if I don't hear anything by lunchtime I will give him a call. I don't like phoning him as he is really busy but I think on this occasion I'm justified.

Had a call back at around eleven, they want me to go in for a couple of days to try and stabilise me but so far haven't been able to find me a bed. As soon as they do I'm going in, I'm not happy about this but I'd rather spend a few days in hospital and get better permanently than feel like this for weeks on end.  Don't know what work are going to think as I've only just gone back after my last chest infection, they must be as pissed off as I am.

Finally got a call at three, they found a bed for me on the high dependancy unit so I've been whisked in for urgent assessment. The journey in was quite quick so we arrived around four thirty and after being shown to my bed I was immediately surrounded by doctors taking blood, doing ECG;s and looking for signs of fluid retention, which is a common sign of heart failure. Then it was ECHO time and a bit of good news, although the pressures in my lungs have increased slightly my heart is still in good shape with no sign of failure so as yet my transplant is not compromised. Tomorrow I'm going to have a CT scan and possibly an x ray to see if there is any infection hanging around that might be causing all this. At the moment there are two possible treatments, I could end up having either or both depending on what is found. My Flolan dose is definitely going to be increased, the thought is my body has got used to the low dose I'm on so it needs to be increased to a higher level. Given that they have tried this twice already and each time I've been terribly sick, they are going to do it while I am here so they can experiment to find which anti sickness treatment will work best for me. The other treatment will be IV antibiotics to try and clear the infection once and for all. Again this must be done while I'm in as I might have an allergic reaction. Either way it doesn't look as though I'm going to get out of here by the weekend.

I will keep you updated.

Monday, 13 February 2012

Bittersweet Memories

Damn and blast it, I knew I should have taken my camera on Saturday morning. Sunday morning was much warmer and as a result the beautiful frost covered trees had gone and been replaced by the usual dead looking branches you get mid winter. The fields were still snow covered though and I saw two hares boxing in one of them, another sign that spring is on the way. Andrew has to go back again next Saturday to have a formal assessment and collect his kit, Peter will have to do the run on his own though as I'm in work that day.

I was woken up at 0700 on Sunday by my phone going off. It was a friend informing me that she'd just heard about the death of singer Whitney Houston. This was obviously devastating for her as she was a big fan, I however was never fond of the singer or her songs and so the news was not such a big deal for me. To me the most remarkable thing about this story is the fact everyone seems so surprised. Just like Amy Winehouse, Whitney was more famous these days for her drug taking than her singing. Unlike Amy the drugs had more or less ruined her voice and she was no longer able to sing her most famous hit because she could not hold the long notes. What I find sadder than her death is that someone with such a wonderful voice and beautiful face chose to destroy it all in probably the most selfish way. I cannot understand why this happens. Some say it is because they came into fame and riches at a very young age, yes well so did Paul McCartney, Cliff Richards and Mick Jagger but they are still all here and they became famous in an age where counselling etc was not only unavailable but unheard off. Todays stars have an army of people looking after them whereas the stars of the 60's, and 70's had only their friends and family to turn to if things got a bit rough. And that, I think, is the crux of the matter. Today's stars have so many people around them that old friends from before they were famous must feel intimidated and sidelined, so much so that eventually they just give up. New friends are hard to find and indeed some stars must wonder if their friends really like them or their fame and money.  The stars of today have lost the grounding that old friends provide and you need a good solid base to survive in the music business because it is fickle and moves fast.

So am I saddened by Whitney Houston's death, well of course, 48 is no age to died but am I surprised? Not in the slightest and that is the saddest thing of all.

After two days of getting up at seven I finally got a lie in today and relished it. When I eventually got up I had a long soak with one of the bath bombs Laurence gave me for Christmas. Suitable relaxed I went into the study to catch up on my e mails to find Peter sneezing his head off and all bunged up. Terrific, I spend most of last week avoiding colds at work and now I'm living with one. I think I'm going to make him wear a bag over his head, it's either that or resign myself to another bout of illness.

We braved Costco this afternoon and wished we hadn't, it was full of families with uncontrollable kids. Mostly they left us alone but we seemed to be plagued by one family where the kids ran around getting in everyone's way and mum just weakly asked then to 'don't do that' every few minutes. Once home and unpacked I settled down for a relaxing cuppa and Andrew made cup cakes for tea.

The debate about organ donation has raised it's head again today. The Welsh are pushing ahead with a law to make people opt out of the organ donation register rather than opt in. Basically this means that there will be presumed consent to have organs donated after death unless they have put their name down on the opt out list. This approach makes so much sense. I know loads of people who want to be organ donors but by their own admission haven't got round to putting their names down on the register. By having the opt out scheme those who really object to having their organs taken will bother to register their refusal. The hope is that more organs will become available as a result and less people will die waiting. Unfortunately even with the Welsh hurrying things along it will not kick in until 2015. In England it is likely to be much later even though various politicians are now backing the plans.  Naturally I have a vested interest in this but it may surprise you to know that I am also on the register as a potential donor. They won't be able to use my lungs or my heart but my kidney, liver and other bits and pieces are OK so why not. If I'm hoping for someone to donate an organ to me it is only right that I should be prepared to donate what I can to others.

I can't believe tomorrow is my last day off before I'm back in work. Why do the four days off always go quicker than the four in work? Another of life's mysteries waiting to be solved.

Saturday, 11 February 2012

Jack Frost Nipping At My Nose

It was -11c at eight o'clock this morning as I was driving Andrew to his First Responder training in Royston. Had a tricky moment on a roundabout approaching the A1(M) but otherwise got him there unscathed. Decided as I was up and out so early on a cold Saturday morning to pay a visit to Tesco and get it over with, even though the thought of rushing back to my nice warm house and a nice hot cuppa was almost overwhelming. I decided to visit the store in Royston rather than travel all the way back to Flitwick or Dunstable and I must say for a big store the choice was appalling. Maybe it was the weather but at just gone nine the shelves were almost empty of bread. Still I managed to stock up on most things and headed home, unfortunately I ended up having to detour as the road into my village was closed by a big accident and police were turning everyone around. I eventually arrived home at eleven and immediately put both the heating and the kettle on. It had warmed up a bit by then, it was now -2c. I've got to do it all again tomorrow and I will be taking my camera with me, everywhere was so pretty with the frost on the tree branches turning them white. Peter couldn't see why I was so delighted as he hates the cold. There were dark mutterings about if I want to prance about in the cold fine but he will be staying in the car, spoil sport. I will have to be careful though as like most people with lung conditions cold air can play havoc with my breathing. Being on warfarin I also have to be careful in slippy weather as a fall could result in internal bleeding and that is definitely something I can do without. I think a hat and a scarf wrapped firmly around my mouth and nose might just be in order, and a pair of shoes with a good grippy sole.

Andrew's training went on until half four so I decided to spend the day catching up on house work and doing some baking, as there was no way I was leaving the house again until I had too. Then it was onto the sofa to watch some of the rugby. Wales are not playing until tomorrow but I like to watch the other matches to see who might be a threat. Wales are playing Scotland who lost to England last week so we are in with a better than 50/50 chance.

Andrew came home talking nineteen to the dozen about his day, he obviously enjoyed himself and was delighted to find out that he'd be spending a twelve hour sift with an ambulance crew just to see what type of things he'll be expected to deal with. This is ideal as he was going to try and arrange a day with a crew prior to starting his uni course just to get a feel for things, he  won't have to now.

The media are still banging on about football but other things of greater importance are happening as well, not least the rumbling row over the Falkland Islands. At the moment it is all posturing on both sides but if things get more serious there is no way we could defend the islands as we did in Thatcher's time. Not only do todays politicians not have the stomach for a fight, the sad truth is we are no longer capable of defending them. Our navy and air force are depleted and most of our army is still deployed in Afghanistan.

The outside temperature is already at -4c having struggled to get past 0c at midday, looks like I'm going to be on tippy toes around those roundabouts again tomorrow. Must, must, must remember my camera.

Thursday, 9 February 2012

Only A Game?

It has been a very sad day at work, we lost a colleague to cancer. I didn't know him all that well but I work with those who do and I could feel their distress. News like this certainly puts the day to day pettiness we deal with into focus. I think it would be fair to say that today some callers were dealt with a little more robustly than usual.

On the whole I have been coping with my extended day pretty well but oh dear was I tired coming home today. I have one more day to get through and then I have four days off, can't wait.

I arrived home to an empty house as Andrew is starting his First Responder training this evening and Peter had to drive him to the venue. It was too far away to come back home and then go out and collect Andrew so Peter is staying with Andrew until the session ends. I am anxiously watching the weather because it is snowing quite hard at the moment. I don't think there is going to be a problem but if it gets any heavier there might be.

So what did I do with this new found freedom? Well after eating and making up my drugs I did exactly the same as I do every night after a day at work, I flopped in front of the TV.

The news is full of the resignation of Fabio Cappello and from the coverage you'd have thought the Queen had died. I am bemused at the fuss this event has caused. It dominates every news bulletin and fills every newspaper, why? OK I appreciate that for football fans this might be a big deal but it is hardly an earth shattering event. Is it equal to 9/11  for instance? No of course not but you wouldn't think so if you turned on the news. It has even pushed the crisis in Syria to the sidelines and personally I think what is going on there is much more important than some Italian throwing in the towel. No doubt there will be people out there who really believe it is the end of the world. Hopefully not many.

We are out and about this weekend. We have to take Andrew to complete his First Responder training so are taking the opportunity to explore somewhere we wouldn't normally visit to go shopping. I just hope it isn't going to be too cold.

Tuesday, 7 February 2012

At Last...

Well I finally got the call I've been waiting for and it is good news. My antibodies have increased, I have 49% antibodies which in simple terms roughly means that out of one hundred donors I'll won't be able to match with forty nine of them. However that means I WILL be able to match with fifty one so I still have a greater than fifty fifty chance, which is good enough odds for me. I still need to have some more tests repeated, which I'm getting an appointment through the post for, but I'm still all good to go. Brilliant! I will hopefully sleep like a baby tonight for a change.

My first day back at work went well. Although it was eight hours I didn't feel all that tired driving home. It was only when I sat down with a cuppa that I began to flag then I got the phone call and boom I was wide awake again. I wish I'd been this bright and breezy at six this morning. It was so damned hard to get out of bed. A quick look outside nearly sent me scurrying back under the covers as it was freezing and foggy, whoop de doo my two favourite things. It started to snow on the drive in but had stopped again by the time I arrived. I'd gone wrapped up like Nanook of the north only to find the heating was going full blast. I ended up in my shirt sleeves and fanning myself with anything suitable that came to hand. No wonder everyone has colds, its so unhealthy. At least two of my colleagues looked like death warmed up and were snuffling and sneezing everywhere. I made a concerted effort to avoid them at all costs as I really do not want to go down with anything else. We did get a piece of good news today and that is that there is another baby on the way. I got to see the scan picture, oh so cute, and mum is looking well if a bit tired. I'll be sad to see my colleague leave but am very happy for her reason, and she has chosen the right time of year so she'll have most of the summer off.

I'm on late starts for the rest of the week, starting at ten but finishing at six, which is a bit of a pain but has to be done. At least I get a small lie in and that is always good news. I hate rushing around in the mornings, being able to take my time and relax really makes a difference to the rest of the day.

Well better ring my mum with the good news and then a celebratory tea.

Monday, 6 February 2012

Long To Reign Over Us...

Wales won! Still cannot believe it but am delighted at the result and what a brilliant match, real edge of the seat stuff. Can't wait for the next match now.

Spent yet another day waiting for the phone call from Harefield that never came. I'm back at work tomorrow so they won't be able to get hold of me until next Monday now. Obviously Peter is at home but I doubt they will tell him anything and I don't want them to ring work because it is not going to be the sort of conversation you can have in front of work colleagues, especially if it is bad news. I think it is very bad that they are keeping me dangling like this. How am I supposed to build up a close, trusting relationship with the team if they can't even phone me when they say they will? I think that is the trouble with the medical profession. They make decisions that affect peoples lives every day and I think they forget that there is a human being in the middle of it all waiting on that decision.

The snow is still with us but is now a curious mixture of slush and rock hard ice. Thankfully nothing fell overnight so roads that were cleared yesterday remained so even if they are a bit icy. It rained for a while this afternoon so more snow was washed away and now the temperature is falling so it looks like more ice for my early morning drive into work tomorrow. Terrific!

Watched the moronic boy from across the road this morning trying to crash his car. Well I assume that was what he was trying to do. He drove at speed along the road then slammed on his brakes and let the car slid along on the ice and snow until it came to rest against a kerb, then he'd back up and do it all again. What got me was the fact that there were several cars parked along the road that he could have easily slid into, thankfully he missed them all and after about ten minutes grew tired of his game and sped off. I can only hope that no one meets him on an icy road in the middle of nowhere because I can guarantee when he does eventually crash, as he is bound to do, he will walk away without a scratch and the other person won't.

Today is the sixtieth anniversary of the Queen's accession to the throne. Sixty years doing the same job and with no prospect of retirement. I wouldn't want to do it. I had to explain to Andrew last night the difference between the accession and the coronation. He thought that they were the same thing. I guess a lot of people think that and until the Queen dies few will experience the difference. It was eighteen months before the Queen was officially crowned, to allow a decent period of mourning for the old King and for all the arrangements to be made. I suspect they might hurry that up a bit for Prince Charles. As he's already in his sixties if they leave it too long he might never get crowned. And so we enter a period of celebration, not that you'd notice as so far it has been pretty low key. The real celebrations will get going in early summer, just before the Olympics, lets hope they are not overshadowed by the games that nobody wants or can afford.

The cats are still blaming me for the cold snap and have taken to following me around the house howling, which is very annoying.

Andrew came home from school mightily miffed that not only was the school open in such bad weather but  he was given a load of homework to do. University life is going to come as such a shocker and employment even more so. Bless!

Sunday, 5 February 2012

Winter Wonderland

Well they said it would snow and my God did it. Woke up to a winter wonderland this morning and loved it.

Yesterday was cold but beautifully bright so I took the opportunity to refill the bird feeders in preparation for the predicted snow. Andrew and Peter decided to fix the puncture Andrew had on the back of his bike but further inspection showed the tyre needed replacing as it had a whacking big nail stuck in the side wall. So the wheel was slung into the back of the car and off they went leaving me to my own devices for an hour or so. I used the time to do a few bits and pieces around the house that I'm not really allowed to do, polishing, dusting, and then trawled through my recipe books looking for a really nice chicken casserole to make.

The afternoon was spent watching the clouds come over, white and heavy, and looking out for the first few tell tale flakes of snow. We'd been promised up to ten centimeters but exactly where and when it would fall was a bit vague. By the time it got dark there still wasn't any sign and I felt a bit disappointed, as long as  everyone is home and safe I quite like a bit of snow so was rather looking forward to it. My relaxed attitude soon disappeared though when Andrew announced that he was going out to Luton with some mates, he wouldn't be dissuaded and left around five thirty and within half an hour is started to snow. I wasn't that concerned because the snow was thin and light and I could hear the trains running up and down. However by nine the snow had got thicker and was beginning to settle. Thankfully Andrew and his mates have more sense than I give them credit for and he returned home around nine thirty. By the time we went to bed there was at least an inch covering the ground and it was still falling. I actually felt a little excited because I love snow provided I don't have to travel in it.

Andrew suffered the effects of the snow this morning. He turned up for his paper round only to discover the papers had not arrived so he returned home and waited for the newsagent to call when they came in. It was almost ten when the call came and it took him ages to do the delivery because he couldn't use his bike and it was heavy going underfoot. He arrived home cold and wet and definitely not as thrilled with the snow as he had been a couple of hours before.

The other person I'm concerned about is Laurence who is currently working nights. He would have left work for home around eight this morning so at least he wouldn't be driving in the dark. I am tempted to ring him but if he is asleep after a long night shift that will not make me very popular. I suspect if he had a problem getting home we'd have heard about it by now so I can only assume he is OK. He usually rings us on Sunday so I'll just have to wait for his call.

The cats are also not in the best frame of mind. Too cold to go out and take their constitutionals they are far from sleepy, instead they are bad tempered and spar with each other at every given opportunity. They have been out, there are paw prints in the snow, but by the look of them it was a quick trip to do the necessary and straight back in again. When not glaring at each other they glare at me as though it is all my fault. I have put some extra food down in the hope they will eat well and then want to sleep it off. If they do we might actually get a few hours peace.

So excited it is the start of the six nations rugby this weekend and Wales are playing Ireland today. The odds are a little against us, but then they always are when it comes to Ireland, but we have beaten them and in recent memory. I have claimed the sofa and have crisps, popcorn and a small bottle of cider on standby. Of course I would prefer it if Wales win but whatever the outcome I'm going to love it.

Of course not everyone loves the snow, especially those that have to get to work in it. However this being a Sunday you would expect fewer problems wouldn't you. This though is Britain and one thing Britain doesn't do is snow. At the first sign of the first flake air, rail and road travel are thrown into chaos. Part of the problem is with the British way of thinking. As a nation we firmly believe 'it will never happen to us' and dislike being told what to do. As a consequence pleas from the authorities to stay indoors unless the journey is urgent usually fall on deaf ears and before you know it there are dozens of badly prepared motorists stuck on a motorway somewhere. Countries who have heavy snow falls every year don't do this. At the beginning of the winter they begin to stock pile nonperishable food stuffs, candles, primus stoves and calor gas. They listen to the forecasts and if they are told to stay at home they batten down the hatches and stay put. The Brits go 'rubbish it'll never get that bad they are just panicking' and are then amazed to find themselves stuck in a blizzard in a tee shirt. And what makes this situation sadder is from year to year we don't learn from these mistakes.

We are expecting more snow overnight and then a thaw. I will doing what I did last night. Snuggling under a duvet on the settee, drinking hot chocolate and watching a DVD. Stay warm.

Friday, 3 February 2012

No News Is Good News, I hope

Well it was drug delivery day today and you'll never guess, yes I'm short of things again. This time it is gloves, they really do not like giving me gloves, and needles. So it is another phone call, another explanation of how many gloves I use a day etc and more money wasted because they alway send the missing items by first class post.

Despite everything I slept better last night but did wake up at one point absolutely freezing and no wonder, we hit minus nine last night. Breakfast, the newspaper and a nice cuppa and then my wait for the phone call from Harefield began. My worst fear is that I'd end up waiting all weekend if I don't hear today and I feel that would be very unfair. Even if it is bad news just tell me goddammit!

Unable to take it anymore I cracked around two and phoned them. My coordinator wasn't in today it seems but will be back Monday. Brilliant! Now I have the whole weekend to ponder what might or might not be. The person I spoke to confirmed my results were in and that they were having a meeting on Monday about them. She would put a note in to my coordinator to ring me after the meeting. How infuriating is that? Of course I immediately began to think that the reluctance to tell me anything meant bad news. Logical, sensible me knows the hospital red tape and knows that no one will tell you anything if you are not their patient. Unfortunately the panicky, doom merchant side of me is busy convincing itself that I am about to be refused, and at the moment that side is winning. I know tomorrow I will be looking at everything in an entirely different light. After all nothing has changed, I know no more than I did yesterday and I haven't been turned down yet. Where there is hope....

Part of the reason I call Harefield instead of waiting for them to call me is that I desperately wanted to get out and do some shopping for the weekend. The weather is closing in and my region is expecting very heavy snow late tomorrow and into Sunday. Our village tends to get snowed in very quickly so I wanted to make sure we had enough of the basics should the worst happen. I managed to walk around Tesco, albeit slowly, without help from wheelchair or oxygen so proof at last that I am better. We then decided to do a quick visit to Costco as I wanted to stock up on some bit and pieces so we headed for the motorway, which is currently a building site. The way our junction works is that we have a bridge over the motorway with four slip roads attached, two southbound, two northbound, each of which is controlled by traffic lights. At best it can be very confusing and there have been some nasty accidents when people have confused which set of lights refers to them. Today it was absolute chaos as the lights were out and the north bound slip road onto the motorway was shut so that traffic had to use the new slip road about four hundred meters further along. There was a great deal of horn honking, tyre squealing and arm waving as drivers tried to work out who had right of way and find the slip road they wanted. There was no sign of anyone trying to control the confusion and we only just spotted the small yellow plaque pointing us towards our exit at the last minute. How there hasn't been an accident there yet I don't know but if there isn't one before the weekend is out I'll eat my hat.

Planning a bit of a cook/bake weekend. I've bought some chicken and veg and will be making a huge stew, some of which I will freeze for later in the week. I'm also planning to make some bread and maybe a few cheese scones to have hot for tea on Sunday. I'm rather looking forward to being snowed in.

Thursday, 2 February 2012

Don't Keep Me Hanging On The Telephone

Doesn't it make you sick that yet another cancer drug, this time for prostate cancer, has been deemed too expensive to give to patients and yet the NHS are still offering free removal, and in some cases replacement, of breast implants. How can anyone justify funding a vanity procedure over a drug that could extend or even save lives? It defies belief and shows just how skewed priorites have become in the good old NHS.

A restless night was predicted and a restless night I had, though to be honest it was probably my own fault. I felt hungry around ten last night so went into the kitchen for a snack. Usually if I have the late night munchies I settle for something bland like cereal, toast or bread and butter. Last night bland wasn't going to cut it so I settled for the worst of all possible combinations, cheese and pickle. I really enjoyed it but it hated me and as a result I had difficulty getting off to sleep in the first place and then kept waking up. No matter how tempting, that will be the very last time I eat cheese so late.

Temperatures fell to minus six last night and could barely reach zero by midday. They are set to fall further still tonight and snow is expected over the weekend. Oh goody! Actually I don't mind the snow as long as I don't have to go anywhere in it. We shouldn't really moan though as this winter hasn't been anywhere as bad as last year and this may be the only real cold snap we get. I've noticed that the evenings are getting lighter at last so spring isn't that far away.

Andrew is more up beat this morning. I suspect he has reviewed his performance and decided that maybe he didn't do as badly as he thought. Hope he's right but we are not likely to find out for a good few weeks as they are interviewing through to March.

Spent the day waiting for the phone call from Harefield regarding my antibodies. As is typical when you are expecting an important call you get loads of calls you don't want and I jumped each time the phone rang. Of course the scammers were out in force today and by early afternoon I was a nervous wreck. By five I was gibbering but no call so I'm going to have to go through it all again tomorrow. I really think its bad when you are promised a call but they don't, especially with something as crucial as this. Even if they couldn't give an answer they should still call to explain why. People understand delays in labs etc, it is the not knowing anything that eats you up. Ah well another restless night to look forward to then.

Wednesday, 1 February 2012

The Owl And The Pussycat.

Finally feeling more like me and my appetite has returned. I have not yet dared to weigh myself but by the look and feel of my clothing I've lost the weight I put on and maybe a little more. Damn and blast it! I had breakfast for the first time in a week today so hopefully I'll soon be stuffing again, I have Mars bars on the shopping list in anticipation.

Didn't sleep that well last night but not because of my chest. I was thinking about Andrew's university interview this afternoon. He of course slept like the dead, typical. He seems excited but I wouldn't say nervous, that's the young for you, full of confidence. However he has cleaned his shoes something he NEVER does so at least he isn't so confident as to not make an effort. I asked him last night if he really wanted his freak of a mother coming with him to such an important event, baring in mind I'll be in a wheelchair and possibly on oxygen. He was lovely and said it didn't make a difference to him as long as I felt I was up to it. So I dressed up warm, slung the wheelchair and oxygen tank in the boot and went.

We arrived about fifteen minutes early and assembled in reception then it all went to pieces. The campus and college building were not exactly disabled friendly and we had to trek miles out of our way to get to lifts to take us up and down while the rest of the party had to hang around waiting for us. After the second such detour I decided that instead of holding everyone up I'd stay in the classroom we were using as a base and the tour could carry on without me, we'd have been there all day if we hadn't. The presentation was interesting, though not that informative and then it was time for the interview. Andrew found it more nerve wracking than he thought he would and by his own admission dried up on occasions and repeated himself from time to time. He's worried that he's blown it. I have tried to calm him down by saying they will be used to people being nervous and will realise that for many it will be their first ever interview. I don't think he is convinced but has accepted that if he doesn't get a firm offer he can always go through clearing or take a year out and try next year with hopefully better grades than he's been predicted. As for me I have everything crossed and want this for him more than I want a transplant.

The news story that caught my eye today is the sad demise of Ash the barn owl. This unfortunate creature was taking part in a falconry display at Colchester zoo when it was spooked, by what no one knows. The owl slammed into a window, fluttered into the meerkat enclosure and then onto a fence in the lion enclosure. Dazed it lost its footing and was batted out of the air by a lioness before the male grabbed it and ate it, mercifully quickly by all accounts. I didn't know whether to laugh or cry. I feel really sorry for the owl but the lion was only doing what lions do. The traumatised children will get over it eventually and have learned that nature is cruel and lions are not fluffy and cuddly. Hopefully the zoo will have also learned a lesson, don't hold falconry displays so close to the lion enclosure in future.

Another restless night looms as tomorrow I'm expecting the results of my antibody tests. I don't know why I'm so worried, they have been OK before but since the last reading I've had more surgery and loads of infections, all of which could affect the readings. I've been told not to worry and everything will probably be all right but there is this niggling doubt in the back of my mind that says there could be a problem. I hope I'm wrong.