Short but Sweet

Will it ever stop raining!!!!!

I have a few minutes before having to get ready for work so I thought I'd take the opportunity to give you a quick update.

Firstly I'd like to thank everyone who has sent messages of support and encouragement, they are very much appreciated and it is nice to know how many people are supporting me. For the one person, and it was only one, who decided to kick me while I'm down. You message says more about you than it does me and I feel real pity that you are so bitter that you cannot do anything other than spit bile at me. If you hate me so much why do you still read my blog?

Well as I'd hoped work has improved my mood considerably by helping me think of something else. You know how it is, the more you think about a problem the bigger and more insurmountable it becomes. Yesterday was busy for a Saturday and I spent a straight seven hours sorting out other peoples problems while forgetting all about mine. As a result when I did think about things instead of the knee jerk 'I'm not doing it' reaction I had before I'm now thinking 'maybe'. I still do not want the RHC but I'm now willing to at least hear what the hospital have to say when they ring on Tuesday.

Had a surprise in the post yesterday. A letter from my consultant to my son's school outlining what I'm going through and asking for consideration to be taken for Andrew when he takes his final exams at the end of May. What a lovely thing to do. Andrew of course is delighted but I have warned him that the letter doesn't mean he doesn't have to revise.

Well time to get my uniform on and head off to see what terrible things my fellow man have been doing to each other. Catch you soon.

Impass

Well the phone call came and although it wasn't a no it is still a maybe as they now want to carry out a Right Heart Catheter test. For those that don't know, this involves pushing a flexible wire into your heart from your groin or neck in order to read the pressures inside it. It is not nice and I, with my needle phobia, find them very traumatic. I immediately refused this procedure but agreed to think about it over the weekend. They will phone me back to discuss it further on Tuesday and, if I agree, fix a date. I know it sounds silly but I would have been happier with a straight 'no'. I have a real fear of this test, my last one was a disaster, and nothing on God's green earth will make me take another one. I think this will mean the end of my transplant if I don't but I just can't do it and I've been tearful all day.

So with the knowledge that I will no longer be on the list I had to go and attend my regular appointment at the Brompton. They had obviously been forewarned as my specialist nurse jumped into action straight away and took me into a quiet room to discuss the situation. Having asked if there was anything that could be done to make taking the test easier for me I said I'd do the procedure but only under general anesthetic, I've had it done this way before. This was refused so the stand off is still on going. After an hour of back and fore discussion the subject was finally dropped. There was some good news though, all the results are now in from my tests earlier in the week and it is looking really good. All my other internal organs are working normally and my coronary arteries are clear with no kinks or blockages, the only cloud on the horizon is in the blood gas and lung function tests, both of which are dreadful, but I knew that anyway, why else would I need a transplant!

I don't know if anyone else feels like this but sometimes I feel that my life is just one long medical test. The last three months, when I haven't been ill, I've either been working or in hospital being tested for something and I think it has all become just too much. I really want just to have some time to have fun. I can't remember when I really had fun. I've been out and enjoyed myself but hospital's and tests, tablets and of course this damned machine are all hovering in the back of my mind ready to spoil things at a moments noticed. After this week all I want to do at the moment is curl up under the covers and cry myself dry.

The journey home was quite interesting, the traffic was absolutely terrible. We don't go through the center of London we skirt around it after being caught in a jam on Oxford Street lasting over an hour. After stop-go, stop-go for miles we finally hit the M1 and turned on the radio for local news. We were totally shocked to find that there was a nutter threatening to blow himself up in the middle of Tottenham Court Road and police were diverting traffic. And what was he protesting about? He'd been refused a HGV license. Some people!

It is back to work tomorrow and I'm on lates so I get the best of both worlds, a lie in and my dinner cooked for when I get back. Now I'm off to put my feet up with a nice cuppa and try and lose myself in Neighbours for half an hour.

Judgement Day

I must start today's blog with The Apprentice. As some of you might have gathered I was less than impressed with last week's effort but last night's episode was back on form and then some. The task was to make and sell upmarket 'street' food but to stand out from the usual burger bars. The key words were 'quality' and 'cost', words that were immediately sidelined by one team and over embraced by the other. After the usual debate of what they were going to sell both teams then went on the hunt for ingredients. Team Sterling decided on a gourmet 'scot pot' an interesting fusion brought about by the team leader being from Lancaster and the selling pitch being in Edinburgh. This team spent a whopping £290 on their ingredients and made a casserole to die for, it certainly looked good and by all accounts smelt and tasted divine.

Team Phoenix employed the services of a famous Italian chef to devise a simple pasta and meatball dish. As the chef looked on with a mixture of exasperation and dismay the team leader ditched all his fresh, prime cut ingredients and started to substitute with the cheapest stuff he could find. The one thing Phoenix did not stint on though was the price and after altering the recipe beyond recognition decided to charge £5.99 per portion, even higher than Sterling were charging for their top quality meals. Having spent just £90 on ingredients Adam was smugly confident he had the winning formula to make a small fortune. His smile became even wider when Katie (The Blonde Assassin) came up with the brilliant idea of pitching next to the football ground just before or after a match. I don't like football, have never attended a game but knew that they were on to a loser. Football fans are more into simple fare they can eat on the terraces with the minimum of fuss and were unlikely to pay the high price demanded. As it turned out I was right and they sold barely a dozen portions. Katie then had the idea of hijacking bus tours dressed as a pizza which unsurprisingly also failed to bring in any customers. Yes I know, I can't work out why she dressed as a pizza to sell meatballs either.

Meanwhile Sterling, while not racing ahead, had a steady stream of customers which increased significantly when they began to drop their prices as end of trading approached. Back in the boardroom Adam remained smug convinced he'd won, the look on his face when Sterling, despite spending almost three times as much, won by just £21 was well worth seeing. Adam, obviously in shock but not out of bluster placed the blame squarely on Katie's shoulders, Lord Sugar agreed and Katie was sent home in back of a black cab. So yet another of my hate figures out of the picture, I'm doing well this year. I have now transfered to Adam, who is emerging as a prime idiot.

Went shopping yesterday and having free reign to eat lots of unhealthy fatty stuff I indulged myself with lots of sweeties, crisps and snacks. I also bough loads of fruit. I am going through the fruit like there is no tomorrow while the unhealthy stuff remains in the cupboard untouched. I am fine with the odd chocolate treat but just cannot bring myself to eat tons of the stuff. My problem is that I prefer fruit to sweets and veg to chips, I just can't help it. I also love cheese so I am letting myself have free range with that, which is a start I suppose.

I also picked up my new glasses, which are a bit, well, different. I've always gone for the John Lennon type before but decided on a change and have chosen a rectangle shape with a thicker, plastic frame. Having got used to them I must say I'm rather pleased. Although there is not much change in my regular prescription, the only reason I'm updating is because the lenses are all scratched, but the reading glasses are a bonus. I didn't realise how much I was beginning to struggle until I read in bed last night, what a difference.

Today is my lazy day, well if you discount the pile of ironing lined up for this afternoon. I'm trying to keep myself busy while I wait for the phone call that will tell me if I'm still OK for transplant. Despite the anxiety I slept well last night but today I am a bundle of nerves. I can see no reason for them to say no based on the test results I've been told about but I'm not a doctor. I hate this feeling that someone, who doesn't really know me, is sitting in a room miles away discussing whether I should be given the chance to live. It is horrendous knowing that I can't even plead my own case, everything has to be judged through test results. I know it is the same for everyone, which is fair but just because it is the right thing to do doesn't mean I have to like it.

As fate would have it I'm off to the Brompton tomorrow for my regular clinic appointment. Let's hope I have something positive to tell them.

What Doesn't Kill You Makes You Stronger

I am glad to say I've survived my assessment at Harefield and come away with only four bruises, two on each arm, which is quite good for me.

I arrive on time on the Monday morning and was whisked up to the ward where I was place in a large, bright and airy room of my own with a magnificent view to the portacabins and construction site, they are having a new suite built. I didn't even have time to unpack when a nurse came in to take bloods, this done the transplant coordinator popped into to give my my itinerary for the day. She explained I'd be going through the whole transplant assessment to see if anything has changed from last time I was seen. She'd barely finished explaining when a wheelchair arrived and whisked me off for my first test. For those who have never been through this process or are waiting to be assessed this is a list of what I had done, these tests may vary from center to center or person to person depending on your condition..

Full bloods
Fasting bloods
Arterial bloods (ouch)
CT scan
Lung perfusion scan
Lung function tests
Bone density scan
Muscle mass tests
Liver and kidney ultra sound
Kidney function (basically collecting all your wee in a pot for 24 hours, yuk!)
ECG
24 hour tape
Full examination by Consultant.
Psychiatric assessment
MRSA swabs
Weight
Height
Chest measurement

All the tests have come back with normal results except the CT scan and the lung function tests which show a marked deterioration, the drugs I am taking are slowing things down but not enough and they certainly are not stopping the progress. There will be a meeting on Thursday to review my listing and I've been told there are four possible outcomes,

Too ill for transplant
Too well for transplant (highly unlikely)
Offer transplant with more urgency, this means being offered lungs too big (these will be trimmed to my size), too small or from ex-smokers, so less than perfect but will increase my chances.
Offer transplant with only good lungs, but this will lessen my chances.

I also had a chance to discuss my post care treatment. My heart is causing a bit of a worry, mainly because my condition is so severe and some damage has been done. In a nutshell they said that because my heart has been beating against great pressure for so long when that pressure is relieved my heart is likely to go crazy and I could have a heart attack. To prevent that happening they are going to put me on a machine, the name of which I've forgotten, which is basically a heart lung machine. It will take over from my heart for a while until everything settles down and they can gradually let my heart take over again. This means a longer time for me in intensive care but they still aim to have me home in six weeks.

For the first time concern has been shown about my work, Although my work is not physically demanding they recognise that at times it can be emotionally and mentally stressful. They are worried that this stress is beginning to have an effect on my physical well being. They haven't said I can't work, in fact it is good that I still do, but I may have to think about making changes to take the pressure off.

I have been offered morphine, not just for the pain but it will ease the feeling of breathlessness and make day to day life easier. I have declined that step at the moment as I feel that is a slippery slope I'd rather not go down just yet.

Surprisingly I've been told to start exercising. I've lost a lot of muscle bulk from my upper body of late and that is not good news for transplant patients, it make recover slower and more painful if your muscles are too week to hold you properly. Gentle weight training has been advised, preferably done sitting down and with strict instruction to not over do it. I am delighted at this because weight training is something I really miss. I've been told to eat more of the stuff that is really bad for me to maintain and hopefully put on weight, Chinese take away here I come.

Overall there can be no guarantees and I know that transplant will be risky, my life expectancy could be significantly shortened and I face a lifetime of drugs, and lifestyle restrictions. I also know I could be offered transplant tomorrow, next week, next year or never. On the other hand, I'm on my last chance for drug therapy, there is nothing after this and this drug could fail me, as other have done, within days, weeks or months. I know my life expectancy is very short at the moment. I feel ill most of the time and I am very restricted on what I can do. Of course if everything goes smoothly I could emerge with a greatly improved life expectancy and quality. I might even be well enough to return to teaching, go on foreign holidays or take part in the transplant games. It should be a no brainer but it is not, it is a hard choice to make and I constantly waver between wanting it now and withdrawing consent. In the end I know I will still go for transplant because even if I only have a couple of years of perfect health it will be worth it.

Chairs

Thursday

Well what a first day back.

I was late, I hate being late and fumed as I sat in a queue of traffic behind a HGV that had broken down at a cross roads. In the end it was only a couple of minutes but it meant I felt rushed as I set up my work station and got ready for my first call. I then got sworn at within two minutes of plugging myself in and it all went downhill from there really. I was so glad when three thirty came around and I could escape.

It has been raining today, a lot but at least we don't need to worry about watering our gardens anymore.

Last night The Apprentice gave it's all to the world of fitness video's, much to my hilarity and delight and the shortest pair of red shorts I've seen in a long while.Both teams boasted candidates who claimed to know a bit about the fitness industry and so the team leaders were chosen without much of a fight for once. One team decided to go with a combination of street dance and martial arts, while the other went back to the 80's and incorporated space hoppers and hula hoops into their routines. Mayhem hit when egos started to come into play and it has to be said both teams ended up with pretty similar and rather bland routines. What made me giggle and Lord Sugar raise his eyebrows in disbelief was the 80's themed team thinking they could sell space hoppers for a pound a piece. In the end Duane failed to impress anyone and was given the boot.

Friday started out bright and breezy but ended once again in downpours and dark clouds. Loving this drought.

Sometimes I despair at my fellow man and today was such a day. Just when you think people couldn't get more stupid they do. Still it made for an interesting time and my seven hours passed quite swiftly.

As I think I've said previously we've been given new chairs which I'm finding very uncomfortable, mainly because they have shortish backs and no head rests. Today the health and safety bod came to see me and once I explained my predicament he agreed that I needed a chair with a long back and I was allowed to keep my old chair. I even have my name on it now so no one can nick it from me, result.

Tomorrow will be a first, I going to have to take my portable oxygen in with me. The walk from car to office is resulting in me being so out of puff I can't speak for the first few minutes after I arrive, and that's with going up in the lift. I fought against doing this for some time but now it has got to be done, it's either that or the bloody wheelchair again. At least with oxygen I'm still on my own two feet. I'm reasoning that it might only be short term anyway as the tests I'm having next week might result in another med to help. If it doesn't, like everything else, I'm sure I will get used to it eventually.

This might be my last blog for a few days. I'm on lates for the next couple of days and then on Monday I'm off to Harefield for tests. I will try and blog from the hospital if I have time and I am allowed to use my computer. If not my next blog will be Wednesday. See you soon.

High Expectations

The goblins have gone, thank goodness. I slept soundly and as far as I can tell didn't dream at all.

The weather, if possible, is even worse today than it was yesterday. Driving rain, high winds and it is cold, it is almost back to winter again.

I treated myself yesterday to a pair of Scholl classic wooden sandals. I had several pairs of these sandals when I was in my late teens and early twenties and I wore them everywhere, with anything. They were so comfortable and I loved them. I gave them up, reluctantly, when I became pregnant as the midwife nagged me about the possibility of falling in them and never went back. While in Tesco's yesterday I heard the familiar clack-clack, turned around and there they were, denim fabric with a few sparkles on them but unmistakable. Back home I scoured the Internet and eventually found a pair in my size on Ebay, a bargain at £18 and brand new. I was even more delighted that they were a beige suede, exactly the same as my favourite pair from all those years ago. Can't wait for them to arrive. Of course there is a downside to Scholls, they are noisy. I wore them in a library with wooden floors once and sounded like a heard of elephants on the rampage. No doubt on the first occasion I wear them to a hospital appointment I'll be warned that they could be a trip risk, however, having fallen off, out off or over many types of shoes, I never once fell or tripped in my Scholls.

Today is definitely a stay indoors day, which is just as well as I haven't done this week's ironing yet. I will settle down on the settee this afternoon and watch a film while slogging away.

Andrew is much better, he is back to eating normally and has now had two uninterrupted nights sleep so is no longer so tired. He's talking of going back to school tomorrow so is obviously much recovered.

It is back to work for me tomorrow and an early start, which I don't mind too much as I get an early finish thrown into the bargain. If this week goes well then I'm going to give eight hours a go again especially as I will only be working the three days instead of four week after next, so an easy introduction. Personally I'm hoping it pours down all weekend, I'm doing Saturday and Sunday this week, as we won't be plagued with complaints about mini motorcycles if it rains.

Next week is more or less given over to hospital appointments. On Monday I'm off to Harefield for an overnight stay while they carry out all manner of lung function tests. Part of it is to reassess for transplant, the other is to try and find out why my condition suddenly worsened and landed me in hospital earlier this year. Although I am back on my feet and feeling OK, my breathing has never fully recovered after the incident despite the introduction of a new med. Sitting down I'm fine but even walking on the flat without oxygen now leaves me breathless. If I over do it, as I did last week by foolishly trying to run up the stairs, I feel as though all breath has left my body and I can't breath fast or deep enough to get any back in. It is a strange and alarming sensation to say the least.

When I was in hospital last time they did a CT scan which showed extensive scarring and pockets of deep seated infection in both lungs. The infection has cleared at last so now is the time to assess exactly how much damage has been done. I'm nervous because the results will obviously make a difference to my chances of a transplant. If the lungs are really bad or haven't changed much I will be OK, if my heart has started to become damaged then they might say no it is too risky now. On the other hand I might become an urgent case to try and get things done before the heart gets any worse. I HATE all this waiting around while other people decide, to put it bluntly, whether I will be given or denied a chance to live. I feel so out of control, knowing why decisions are made doesn't make it any better either.

Don't get me wrong, I love the way my specialists are so open with me and always explain all the possibilities and risks to me so I fully understand what I'm letting myself in for. Sometimes, such as now, I wish they'd keep more to themselves. Although I'm usually very positive I tend to err on the side of the worst possible outcome. I think I do this so I'm always prepared for bad news but it means that as a result I don't sleep much for the few days before tests or clinics. I'm quite glad I'm in work right up to the day I go in as it will keep my mind off it. On the other hand I can see Sunday being a disaster as by then I'll have barely slept and my stomach will be churning.

After two days back home I'm then down in the Brompton for my regular clinic, hence why I'm only working three days rather than four. I am expecting an increase in my meds at this appointment as I've had problems recently with pain and, of course, increased breathlessness. I'm not looking forward to that either truth be told. OK I'll feel better breathing wise but if things go the way they have previously I'll be vomiting everywhere for weeks.

Oh how I long for the says when the only major decisions I had to make were what to put in the kids lunch boxes and whether I should go for a long walk or an hour in the pool. 

Rip Off!

I'm sitting here in the middle of a drought hit county listening to the rain being lashed against the window by gale force winds. Typical, the minute they put a  hosepipe ban in place the heavens opened and we haven't had a completely dry day since. Of course this being a special year with the jubilee and Olympics taking place this weather is likely to continue until at least September. It is always the same in Britain, plan massive, mostly outdoor, events and down comes the rain. Tell people they can't water their gardens and they don't need to. Maybe next year, when there is nothing special happening, at least not that I know of, it might be the summer of 1976 again, especially if the weather people can be bribed into predicting freezing temperatures and torrential rain.

My dream was back again last night, not the entire thing, just the bit where I hauled the first goblin out of the shed window and threw him to the ground. This played on a loop over and over but I never managed to progress on to what happened next, very odd.

I was saddened today to learn of the death of yet another friend with Pulmonary Hypertension. I never met Suzi personally but had chatted to her on the PH forums and there are so few of us that there is an 'all in it together' vibe that makes us close. There has been a rather alarming number of deaths from PH over the last few months, more than I can remember in previous years. I know it is a very selfish thing to say but it makes me nervous and very aware that I am now well beyond my predicted life expectancy. There have been great leaps forward in treatments and possible cures over the last couple of years. New drugs have been developed to keep us going, stem cell research is still on going but those taking part talk about it as if it is a miracle cure and of course transplant survival rates, especially for lungs have increased. Sadly all these things are not happening quickly enough and many more will die before a proper cure is found.

In today's news a story that is particularly close to my heart.

A couple of years ago, on behalf of the PH Association, I and several other PH sufferers took part in a campaign to make airlines stop charging for oxygen on flights. At the time the majority of airlines charged any thing between £100 and £300 pounds to provide oxygen often doubling the cost of the flight. During the campaign I took part in a select committee in parliament and attended several functions there intended to raise awareness amongst MP's and the like. I even went on an early morning radio show to highlight the cause, nervous or what? I think we made a difference, at least the scandal was out in the open and some airlines did change their policies. So imagine my horror when reading an online paper to find the one airline is charging £660 or 800 euros for a three year old to have oxygen on a flight. This flight should be taking her for treatment for her rare condition but her cash strapped parents cannot afford this extra charge. What an outrage, I shall not be travelling by KLM again, and if you are disabled or know someone who is I suggest you might want to think twice.
Full story here http://www.thesun.co.uk/sol/homepage/news/4260304/Heartless-airline-KLM-stops-ill-toddler-Jolina-Skye-Barton-from-getting-treatment.html

I've got the weekly trip to Tesco to look forward to this afternoon, I can only hope the weather perks up before we venture out. I'm going to try and find some tempting little treats for Andrew. He is eating again now but not normally and is very tired and weak. He was supposed to return to school today but has had to give it a miss as he just doesn't feel up to it. He's better, there is no doubt about it, but not himself, hopefully it won't belong before he is bouncing around again.

I have to make a correction about the trial of Anders Breivik. Yesterday I said that they had decided before the trial that he was sane. However watching a news report today it seems that the assessment of his sanity is on going and will continue right through the trial.

The trip to Tesco was more exciting than usual as Peter took the opportunity to try out our new satnav after the other one died on us a few weeks ago. I shall miss our old satnav as it had developed a rather endearing stutter. This one was efficient, rather posh and warned us about a speed camera that wasn't there while ignoring one that was.

Time for a cuppa and to put my feet up.