Tuesday, 29 April 2014

A Day at the Brompton

Oh my gosh, what a day!

I woke up early full of excitement and for once I was dressed and ready to go before either of my men. Andrew was coming along as a way of distraction before his finals, which start today. more on that later.

Despite hopping around like a maniac I actually had a good night's sleep. Of course it helped that I was quite busy on Sunday making two trips out in the car. One to pick Andrew and Svet up from Hatfield and a second later that evening to take Svet to the airport. I was sad for both of them that their time together had been so short but all is not lost. Andrew has a good few weeks between the end of his course and the start of his job so I'm sure a trip will be taken. Also when he starts work, not only will he be able to afford more trips but he will also have more time due to his shift patterns. We worked out that he might actually end up seeing Svet more than he's ever done.

I deliberately stayed up quite late on Sunday night in order to aid the sleep process and the tactic seems to have worked, along with a plate of chips with mayo just before going to bed. I was awake at quarter to seven and was dressed and ready by half eight but then had to kick my heels waiting for everyone else. We were not due at the hospital until eleven but I wanted to arrive early in the hope of getting the drug early. The drive in was quick and we only had one heart stopping moment. We'd just past the M25 turn off when my mobile rang. The caller was 'withheld' so it could either be work wondering where I am as they'd forgotten I was not in, Brompton cancelling me or Papworth, yeah right. I nearly dropped then phone when the caller announced herself as Anne from the transplant team at Papworth. Ever so briefly my heart soared only to be dash down by her next sentence, 'it's nothing urgent'. Anne was ringing to confirm that I was now a priority on the Lung list but keeping the option of heart/lung should one come up. So it was good news. However a different type of operation means using a different machine so they wanted me to come in to have a scan on my femoral arteries to check they are good enough for the life support machine they use with lung transplant. I will get a letter in the post with a date in the next two weeks. She reassured me that I could still get a transplant before the scan if one came up as they can't afford to reject a rare match.

Once we'd all calmed down the rest of the journey passed without incident and we arrive at the hospital half an hour early. First up were the usually tests, SAT's blood pressure, temperature, heart rate. Then I had an ECG, I was told I'd be getting a mini MOT so I wasn't surprised. After all that we were sent off for an early lunch and when we returned there was the drug. In pretty pink boxes. The pharmacist and specialist nurse then stood around while I made up and administered the drug. I did it in under ten minutes and both were very surprised at how quick and competent I was. The pharmacist said I could teach some of the nurses a thing or two.

Drug done I was then whisked off to have an ECHO. Peter came with me but Andrew stayed behind. He had some last minute revising to do and said he would just be distracted at home so came with us as, 'hospitals are boring so I won't have any choice, there's nothing else to do'. It was while I was waiting for my ECHO that I met Yatin Patel, a fellow PH patient, who was also in for a change over. We were both very excited and really looking forward to the extra freedom. It is always lovely to meet people you know through the PH forums and get to know them properly.

The ECHO was not a good experience. I foolishly agreed to a trainee, I must have been in a very good mood as I usually say no, and she was not the best. She had a problem finding my mitral valve so after asking me whether I was 'difficult to scan', how the hell should I know, I just lie there, went for a more physical approach. She started pressing really hard and I gritted my teeth vowing not to complain as I just wanted it over with. However when she rammed the probe between two ribs I complained very loudly indeed. Her mentor came over and began to talk her through ways she could view this valve without injuring the patient. In the end, after ninety excruciating minutes I was allowed to go back to the ward. This morning I have a bruise on my ribs and I'm not happy.

Back on the ward I waited for the results and when my nurse specialist did arrive she came with gifts. A load of labels to stick on my cassettes, so I can keep track of when I make them up, two lunch boxes to keep them in the fridge, apparently you can't just dump them among your tomatoes, and a very heavy box of Sodium Chloride solution with which to mix the drug. She told me that there had been some changes to my ECHO but she needed to see the full report before she could tell how significant they were. And so I was sent on my way. I've been told to rest for twenty four hours just in case of any adverse reaction so I'm at home doing just that.

The decision to increase my dose has been delayed. The reason being is that I'd become used to Flolan, as evidenced by my decreasing nausea. As you become used to something then the effectiveness decreases. Ultimately increasing the Flolan would probably not have worked long term. Veletri, though essentially the same drug, has a different composition and so it may, just may sort me out without needing the increase. If I'm still feeling poorly in a couple of weeks then I'm to contact Carl and we'll go for the increase.I have to say my breathing does seem a little easier today and my nausea is back, though not too bad, so something is happening. Of course it will take a while before I know for sure whether this is a blip, after having been messed about so much yesterday, or an actual improvement.

On the plus side I now only need to change my cassette once every twenty four hours, my line every forty eight hours and the dreaded bung every week. I still need to change my dressing twice a week though as it is at the line site that any infection will first show and I still need to keep a close eye on that. However the reduced messing about with the line means a reduced risk of infection so that has to be good.

Today I am going to have to do some work however and make up enough cassettes to last until Sunday. On Sunday I will then make up a week's worth and from there I should be able to work out some sort of routine. The big plus is that if out and about, there will no longer be the big rush to get home in time to change the meds. Each cassette, for my dosage, has a buffer of approximately twelve hours, so if caught in a jam I can go up to twelve hours without needing to change the cassette.Brilliant!

My one big worry at the moment is Healthcare at Home. They can't deliver an accurate order when you've been on the same drug for three years. How they are going to cope with a change I don't know, especially as I'm due a delivery on Friday. The last thing I want is a month's worth of Flolan. The hospital is going to contact them and get them to replace the Flolan with the Veletri but I'm not holding out much hope. At least I did leave the hospital with fourteen days worth so there is time to sort things out.

So that's about it. All I have to do today is relax and monitor any changes but so far, so good. Right time to sort out my equipment for this afternoon. More on Friday.

Sunday, 27 April 2014

Twenty Four Hours From Veletri

Oh my goodness. I feel like a little girl who's birthday it is tomorrow.  I know it is ridiculous to be so excited over a simple medication change but I am. Yes, I know I should be more excited about how much better I , hopefully, will feel with the accompanying increase but it is hard to get worked up about something doing it's job. It's a bit like getting excited because your car starts or the sun comes up. you expect it to happen so emotions only get involved when they don't.

It's the new freedom I can't wait for. I know I keep going on about it but after three years tied to needles and drugs and things every night then to me it is like Christmas and my birthday and everything coming together in one day. I know that for one day a week I will be spending time preparing a week's worth of meds but that is one day, not seven days a week EVERY week. That I can put up with. I've done my homework and read the instructions and watched the DVD several times so I'm all set.

So I'm trying to keep myself busy and not think of the delights to come. In order to achieve this I have turned today into samples day. The ladies will understand this more than the men but stay with me. Every time I go to pick something up from L'Occitane I get free samples. I also get free samples through the post and from several other places. Over time these little packets build up until I have a shelf full of them and I have a choice to either use them or throw them. Reluctant to waste anything, especially expensive face creams I can't afford, I occasionally have a day when I try them all out. So I smeared cream on my face, then another around my eyes, another on my neck and a fourth on my body. I emerged from the bathroom with such a cacophony of smells I set Peter's asthma off and had to wash most of the stuff off again. The tiny perfume samples I have are now in my handbag. Always good for a quick freshen up during the day.

So now I'm twiddling my thumbs a bit. I have some ironing but can't get in the mood for that just yet. I will be going out later though. Andrew and Svet are back from Paris later today and I'm going to drive to Hatfield to pick them up and then take Svet to the airport so she can catch her plane back to Bulgeria. That should use up at least an hour, maybe two if I'm lucky.

Yesterday I just couldn't stay in so we went off to Milton Keynes where I picked up my new contact lenses and then had a rummage around a couple of charity shops but I came away empty handed again. Seems no one is donating crime fiction these days. Most of the shelves were wall to wall Mills and Boon or Catherine Cookson. Peter also lucked out but we don't really mind. Getting out and about was good enough for us, especially as the sun chose to come out and it was rather warm. Driving home and all that changed, it was like a monsoon, obviously we had chosen the right hour for our excursion.

Britain's Got Talent Watch

Oh my goodness things just keep getting worse, or is that better, I just can't tell.

There were surprisingly few back stories in last night's episode, which was a relief as they were rather a sorry crowd. First up we had a collection of lunatics from Ireland. One danced (badly) around a broom dressed in a football strip and a flat cap. No I don't know either. Then we had a man who disappeared behind his prop for so long Dec went out and asked if he was all right. When the performer did appear it was to perform the worst David Jason impression in the history of the world before falling over.

Ireland did have a little gem up it's sleeve though and the dance troop were brilliant, and this is from someone who doesn't like dance troops. Maybe it was because all that had gone before was so bad, and in the clear light of day we will see something different, but for now they were great. In fact it was a night for dance troops, with three competing altogether and all three going through.

We also had a bit of culture in the form of three rather portly ladies performing Hamlet. Well that's what they said it was. I know Hamlet pretty well and found the whole thing toe curling. They were awful, and out, thank goodness though bizarrely Simon seemed to like it.

The child act of the evening was pretty good. If you ignored his weird hair cut and his scary looking mum they boy could actually sing. Though for me he suffered a little from Jamaica Inn Syndrome. Having said all that, and considering he'd written the song himself, he did very well and at least wasn't annoying.

Of course it isn't all over until the fat lady sings, which she did, badly and got booted out.

Right time for a cuppa and a biscuit, then I'll have to tackle that ironing. It has to be done. More on Tuesday.

Saturday, 26 April 2014

Getting Excited

I have to admit I am getting just a little bit excited about my medication change on Monday.

Every night I struggle to push the mixed drug through a filter and into the cassette. The new drug comes in liquid form, unlike Flolan which is powder, and therefore will not need to be filtered. As I pushed and panted last night I found myself thinking 'thank God I won't be doing this next week'. Suddenly I felt as though a weight had been lifted from me. Not only will I no longer have to filter anything, all I'll have to do at night is change the cassette over and replace my line. The whole procedure will take less than ten minutes rather than the forty it takes now. I've though about this and have decided to do the change over as soon as I get in from work, thus ensuring I'll have a whole evening free each day. At the moment I have my tea and then listen, rather than watch, the news while I mix things. It's going to mean so much more freedom I won't know what to do with myself. It's going to be better for travelling as well. Now if we want to spend a few days away I won't have to fill the boot with boxes and boxes of medication. Brilliant!

I'm having a very lazy day today. I got up late, again this will not be an issue with the new drug, and had breakfast while reading the papers. Then into a lovely rose scented bath for half an hour before finally getting dressed. Looking out the window my heart sank a bit as this morning is just the sort of morning I'd like to go out for a long walk or jog. It's a bit damp but I liked the smell of wet earth as I pounded through the fields and past freshly dug gardens. My frustration with my physical restrictions increases in relation to the improvement in the weather. I'm more content to spend my days reading, painting or watching TV when it is cold and wet but yearn to be out and about as soon as it starts to perk up.

Yes I know I could go out on my scooter but it's just not the same. And on a scooter you can't veer off track and dive into some bushes if you spot something interesting. For instance there is a wonderful bluebell wood that I travel past each day to work. In the old days I'd get in there and take some photos or just walk around enjoying the perfume. Now, well I couldn't even climb the fence and the undergrowth is not exactly scooter friendly. Arrrggghhhh! I hate being like this!

As I sit here typing I'm nervously waiting for the results of my blood test in yesterday's Warfarin clinic. I've been a bit of a naughty girl this week.

I absolutely adore broccoli and spinach. Now these two vegetables do not go well with Warfarin. They both contain things that alter the effectiveness of the drug. So with great reluctance I only have them on very, very rare occasions. However this week the canteen served up a broccoli bake and a cauliflower and broccoli cheese on two consecutive days and I just could not resist. It was a very silly thing to do just days before my blood test but my will power just flew out of the window and that was that. Still, they say a little of what you fancy does you good so I didn't beat myself up about it. After all it would be a very miserable life if I denied myself all the things I'm not supposed to have all the time. I learned long ago that putting things off doesn't work when you are terminally ill. Put it off too long and you may end up never doing them.

With that in mind I'm spending this weekend looking at hotels. I've got some leave coming up over the next few months and we'd rather like to go somewhere and do something with it than sit at home. Of course, first thing we need to do is decide where to go. So far we've stuck rather close to home, just in case of the call but, having decided the call is never coming, I feel like going a little further afield this time and am looking at York as a possible destination. It is going to be a very interesting weekend and I predict a few arguments before we settle on a place. I will keep you updated of progress.

In the news I'm getting just a bit fed up with all the political goings on. The European elections are coming up at the end of May and instead of telling us what they can do for us, the voting public, they seem set to try and knock seven bells out of each other. Every political broadcast I've seen so far is mostly about what lies the other lot are telling you. This year I feel my vote is very much going to be of the protest kind, that's if I even bother because frankly I wouldn't trust any of them as far as I could spit.

Ah! I've just heard the post arrive. Better go and face the music. I'll let you know how it went tomorrow.

Friday, 25 April 2014

A Change on the Way

I cannot believe the weather we are having at the moment. One day it is dry and sunny, the next damp and foggy. In fact forget days, we are having four seasons in one day and it is playing havoc with my breathing.

I've coped OK at work but have had to resort to my oxygen if I go anywhere out of the room so that's a bit of a pain I have to say. However the canteen people now recognise me and know my name so in some ways that has been a benefit as they have come over all helpful. Since wearing my oxygen I've had random people come up and ask me how I am, offer to carry my food and open doors for me. On one occasion I even got a hug!

This makes me feel more secure but at the same time slightly uncomfortable. I'm touched by how many people have said they are rooting/praying/wishing for me. However for someone who is more comfortable under the radar, being recognised all the time is very strange. Still hopefully it won't be for long and I'll be able to nip out for a sandwich without my oxygen again very soon.

Yes, the letter has come! It is official! I get my new medication on Monday. I will be admitted to the Royal Brompton on Monday morning where the switch over will take place and they will turn the wick up a bit. If all goes to plan I will be sent home early evening, if not I'll be spending the night until things get sorted. To be fair the new drug is virtually the same as the old drug so no one is expecting any problems there. The problems for me come with the increased dose. Regular readers will know that I can only tolerate a very small dose of Flolan. They have tried to increase me to the prescribed dosage many times over the last three years, yes I have been on it that long, but each attempt has always ended in disaster. I've ended up in bed unable to keep even water down. However, I am slipping and this has to be halted before it gathers pace because once the downward slide begins it is very difficult to stop it and near on impossible to reverse. To be honest I'm rather hoping I get the call this weekend so I can avoid all the fuss but I doubt I'll be that lucky.

This weekend is going to be a quiet one. Laurence is working and Andrew is in Paris with Svet to see a concert so it will just be me and Peter. As much as I love both my kids, it will be lovely just to chill out and relax rather than be running around cooking and washing for them. Andrew returns on Sunday and is back in college on Tuesday, so I can also look forward to a peaceful week.

There was a few days of panic this week when I thought I'd lost my bank card. Now I'm pretty good with things like that. I'm very security conscious, I change my pin regularly, I check my bank account regularly for any odd goings on and I never let anyone else use it.  So you can imagine the feeling when suddenly it wasn't there. Fortunately I knew where I'd last used it outside and clearly remembered using it at home at a later date to check my bank balance. After a thorough search I admitted defeat and rang the bank to report it missing and order a new card. The new card arrive yesterday and I was very relieved to find my account was intact. I found my old card this morning in my handbag. The same bag I'd tipped out on the table to check, twice. Typical!

This weekend is the weekend of the PHA Conference. Unfortunately I've been scuppered from going once again. This time by Peter not being able to take any time off. I hope all my PH friends have a really good time and I hope to join you next time around.

Monday, 21 April 2014

An Unexpected Day Off.

I bet you were not expecting a blog from me today, especially as on my last blog I'd said I wouldn't be posting until Friday. To be honest I didn't expect to be writing this either but it hasn't exactly been my most successful twelve hours ever. For a start today marks my sixteenth month on the transplant list and still no sign of any call but my troubles really started when I was getting ready for bed.

Last night I brushed my teeth before going to bed, as you do. As I'd been eating a lot of meat and chocolate I decided to go that extra mile and give them a good flossing too. I sat on the edge of the bath sawing away and trying not to dribble when suddenly the floss refused to move. I tugged, I pulled and I began to panic. The stuff was well and truly stuck. Seeking help I went into the bedroom where Peter was already tucked up and reading a book. He took one look at me with this long thread of floss hanging out of my mouth and started laughing hysterically. I was by now hysterical myself, partly from panic and partly from laughter. Between gasps I explained my predicament but it quickly became apparent the Peter was going to of no use whatsoever.

So I went to Andrew's room and explained again. He too burst out laughing but at least did offer to help. He got his little torch out and shone it in my mouth. Gave a few experimental tugs on the floss and said. 'My word, you have got it stuck haven't you'! Over the course of the next twenty minutes he tried everything from cocktail sticks to tweezers, all without success. By now I was laughing so much tears were running down my face but my mouth was also becoming very sore. It was when he advanced on me with a steel probe, with a very sharp point,  from his dissecting kit that I finally called a halt. Nothing that had been inside a rat or frog was going in my mouth, no matter how many alcohol wipes he used on it. In the end I used the tweezers to pull as much as I could from my teeth and left it at that. I still have some stuck in there this morning but I'm going to give it a couple of days to see if it can work it's own way out. If not I'm going to have to visit the dentist.

This morning I was awake at quarter to six and reluctantly showered and dressed for work. I made myself some sandwiches, as the canteen would be closed this being a bank holiday, and stuffed crisps, fruit and nuts into my bag to see me through the day. It was a horrible drive in with thick fog and the occasional sprinkling of rain. The roads were very quiet though so I got there rather early. I walked in and said my good mornings and then one of my colleagues informed me that I shouldn't be there. 'You're on leave.'
'I am?'
I have to say this surprised me as I don't remember booking leave for today or indeed getting any granted. I went over to speak to my supervisor who confirmed that, according to the computer, I was indeed on leave. Confused I left as quickly as my little legs would carry me. I'm sure it is some sort of mess up but as I've worked every bank holiday, including Christmas, for over a year I wasn't going to query it. If the computer says I'm on leave, I'm on leave and that's good enough for me.

So I returned home, changed, made myself a cuppa and read the newspaper. Now what to do with my extra day? Well I've got some chocolate eggs and the rest of the cake to finish off. And if I'm bored I could have another go at removing my floss. Next blog will definitely be on Friday.

Sunday, 20 April 2014

Ho, Ho, Ho It's Magic!

I hope everyone had a lovely Easter and got lots of eggs from the Easter Bunny.

I was up early this morning, which was disappointing and a good thing all in one. Though to be honest I was at a bit of a loss. I'd already made the cake, the lamb was all ready to be slammed in the oven and all I had to do for the starter is pop it in the oven for ten minutes. Simples!

So this morning I proof read Andrew's final essays. They were full of long words and medical terms I struggled with so I stuck with sorting out his normal spelling and punctuation as well as making sure his sentences made sense. Some times if he has a lot to get out on the paper he'll start one sentence before finishing another. That done I sorted out the veg, prepared the starter and then found myself with nothing to do again. Although we like to make an effort at Easter, we don't go to town in the same way as we do Christmas. We still like the table to look pretty though and while I sat down to enjoy a cuppa, Peter got to work doing his magic in the dining room. By the time he'd finished everything looked really lovely. The only mistake, he used one of my apple scented tea lights instead of a plain one in the candle holder. Fortunately they are quite old so the perfume was not as strong as it could have been.

Laurence arrive just before midday and half an hour later we were sat at the table tucking in to some lovely gooey baked Camembert. The lamb was lovely and the cake went down really well, Laurence liked it so much he took a huge chunk of it home with him. Afterwards we settled down to watch the Grand Prix, Andrew went up to his room to make the corrections on his essays and Laurence went out to meet some of his friends at the pub.

So now it is back to reality and I have my uniform to iron for tomorrow, which I'm procrastinating about as I don't want to be thinking about work yet.

Tomorrow Svet arrives from Bulgeria and she and Andrew will return to Hatfield for a few days before taking the Eurostar to Paris for the weekend. Naturally Peter and I are going to be acting as taxi's for the duration but it is a rare event so we really don't mind.

Britain's Got Talent Watch

This week's BGT had a magical theme with the added excitement of one of the contestants nearly killing Simon Cowell.

First contestant of note went by the name of Lettice and looked as though she'd just fallen out of the film Barbarella. She was very posh, as mad as a box of frogs but my goodness could she play the violin. She was absolutely brilliant.

We then had a string of magician's the majority of whom failed to do any magic. Some dropped their cards, some got tangled up in things, all had had a charisma bypass at some point in their lives. There was one who stood out and kept producing birds out of thin air. The judges were impressed, I was impressed, he went through.

Next up was the regular child act. This one was dressed as a cowboy, which got me inwardly groaning from the start. However this kid didn't sing or dance or tell toe curling jokes. This kid threw knives at his mum. Thankfully he was quite good and no blood was seen. He impressed Simon so much that Simon wanted to stand in front of the board and let the kid throw knives at him. The kid duly agreed and the first knife hit home. However the second knife bounced off the board, across Simon's face and embedded itself in the floor just centimeters from Simon's toes. Despite this potentially career ending mistake the kid was sent through to the live rounds.

And now we come to the golden buzzer. Oh dear Lord! The final act was a waiter with a special taste in clothing and a manner that made you think he might have escaped from somewhere. He was not English but the show failed to shed light on his country of origin. After talking us through his use of Botox He reassured everyone that he was a good singer. We sort of knew what was coming. Yes he could have been another Paul Potts but as it turned out he was more like Paul Gascoign after a good night. He slurred, he puffed, he ran around the stage but he didn't hold a tune. Despite all this David Walliams, possibly because he was fed up with the others pressing his button, hit the golden buzzer and sent the man through. To say everyone was both appalled and shocked would be an understatement. All I can say for sure it's going to be interesting when we get to the live shows.

Right, I'd better get this damned ironing done. Next blog Friday.

Saturday, 19 April 2014

Preparing For Easter

After yesterday's rushing around I had a lie in this morning followed by a leisurely breakfast with the papers and a long soak in my favourite bath bomb.

Then it was time to get started on the cake. Now although my baking is improving I'm getting far from consistent results. Sometimes they come out light as a cloud and other times like a brick. With this being a special cake the pressure was on not to produce a brick.

I followed the recipe to the letter and popped the resulting sludge into the oven for an anxious wait. Twenty minutes in and I risked a peep through the oven door. My cake was rising magnificently and was now level with the top of the tin. Another twenty minutes and it had passed the tin and was now at least an inch above the edge. By the time it came out it was huge but at least it had risen and now it was time to attempt a seasonal bit of decor. Again everything went well and I ended up with a cake that I couldn't believe had been produced by my hands. I have included a picture so you can judge. Of course the proof is always in the eating and as that is not happening until tomorrow all we can do is stare and dribble in anticipation of things to come.

After that I made lunch and then we settled down to watch the Grand Prix qualifying from China. Whilst watching the house phone rang and my heart stopped.  Unfortunately it wasn't The Call, it was just some annoying bloke trying to sell us a new kitchen. However I was surprised at how the jumpy I was. I'd stopped jumping after the eight month without a call so to start jumping again now was rather strange. I was also surprised at how hopeful I was and how disappointed when it turned out to be just a sales call. I very nearly burst into tears.

That's the trouble with renewed hope. It comes with all the emotions and conviction that you had when first put on the list and brings along a touch of desperation as an additional extra. Of course just because the hospital says you are now in with a better chance doesn't mean it's actually going to happen. Doubling zero chance still leaves you with zero chance. However I might just be lucky, you never know, so I'll probably keep jumping out of my skin until another couple of months go by and then return to normal.

So now I'm looking forward to tomorrow when I'll have my family with me and we can sit down for a lovely meal and enjoy some rare family time. This time next year getting together is going to be even harder as Andrew will be working and may be on duty over the holiday. However I'm proud of my boys and what they do and if that means that sometimes special occasions have to be celebrated out of time, so be it.

So with my jobs done for today and everything under control for tomorrow I'm going to kick back and have a lovely relaxing evening watching Britain's (not) Got Talent and maybe sipping on a very small cider.

. So all that's left is to wish you all a very Happy Easter. Next blog tomorrow.

Friday, 18 April 2014

Back in the Swing

Well the return to work was much better than I thought. It took me longer to get around, having to use the lift down as well as up, and using my oxygen to get lunch from the canteen. It wasn't as bad as I thought it would be and after a shaky start I soon got back into the swing of it. I can't thank my colleagues enough for the help they've given me. They've fetched my chair, wrestled with the fans and offered to get me tea, sweets and sandwiches if I didn't fancy the trek myself. They have been so kind I feel blessed to work with such lovely, caring people.

One week and doing this every night will be history

The shaky start was down to forgetting all my passwords and locking myself out of every system. I don't know what on earth happened as I've been away longer than this and remembered them all with no problems. I can only think that my mind was on other things. However once I'd managed to get onto the system I settled down to deal with the 850 emails that were waiting for me (no lie). The problem is that things change so quickly that you dare not do anything until you have caught up with the new directives. By my first break I was more or less up to speed and felt confident to start taking calls without messing up. After that I got my confidence back quickly and didn't have many problems. It is true that I had a few senior moments, such as taking a message from a one colleague to another and completely forgetting the message, and who'd sent it, by the time I crossed the room. In my job the saying is that as long as you don't kill anyone you are doing OK. Well I didn't kill anyone so I guess I must be doing at least reasonably well.

On Friday I got two pieces of very good news that really put a spring in my step.

I keep campaigning

First up Andrew got a job offer from the East of England Ambulance Service. How wonderful to be able to choose between two services. Of course it is the EEAS post he really wanted so he will now be writing to the LAS turning down their offer. It is a big relief to me too as Andrew will be able to live at home and won't be paying sky high rents to live in London. He will start in October and will probably be based in Luton, though for the first few months he's going to be moving around so he gets to know all the surrounding areas too.

I also got some good news in the form of a phone call from the Brompton asking me to go in on 28th April to have my new medication and dose increase. At last! At least it is only a week away but I won't believe it until I'm actually there with the drug in my hand. They are sending a letter of confirmation. If that actually arrives I will be able to relax a little.

I went to my warfarin clinic this morning, having had an appointment through the post, and arrived to find it was closed. Returning home I read the letter again and found it actually said Thursday 17th April. Rats! However I wouldn't have been able to go anyway as I was in work. I can expect a telling off to arrive sometime next week.

So after battling Tesco my weekend starts now. I'm making a cake tomorrow and then Laurence is coming on Sunday for lunch. I'm doing a traditional lamb roast with all the trimmings, baked Camembert starter and the cake for dessert with whipped cream. We've bought a bottle of wine and I will probably risk half a glass. I can't risk anymore as I'm back at work bright and early on Monday morning.

Right time for a cuppa and to put my feet up for half an hour. I've had a busy three days so I feel I deserve the cream egg that's waiting for me in the fridge. 

Tuesday, 15 April 2014

The Difficulty in Asking for Help

Woke up to brilliant sunshine this morning. The trouble with waking to such a bright day is, at this time of year, you think sun equals hot. Being completely fooled I threw open my bedroom window and took a deep breath of crisp freezing air and my lungs immediately puckered and shrank and I had to take my inhaler to sort things out. You'd have thought I'd have learned by now but no, I still get fooled every spring. However instead of feeling down about it I thought next spring I'll be able to do that and my lungs will expand and I'll be able to take another big breath, then another.

My garden at the moment
Yesterday was very much a do nothing day. However I did take an experimental trip into Aldi, they had something on sale that Peter wanted to buy.  I figured that as I was returning to work on Wednesday it was time to really test the waters to work out how much extra help I'm likely to need. I actually managed quite well. It was more or less a walk in and walk out exercise but I managed on my own two feet and without oxygen. It was extremely slow going though and back at the car my heart pounded fit to bust until my breathing calmed down. So, although I can manage a short distance without oxygen, it looks like I'm going to need oxygen for much shorter distances that previously. That's going to make going to the canteen fun. Of course we didn't come out with just what Peter wanted. Along the way we'd acquired a pot of pate, a bag of apples, a bag of mini chocolate eggs and a huge bag of fruit chews. Well I am still trying to gain weight.

Today Peter has to go to Watford so I'm going along for the ride, well I really cannot stay indoors on such a beautiful day, but I will be taking oxygen and my scooter. I can't risk making myself ill for the sake of 'can't be bothered'.

Again this increased reliance on oxygen depressed me a bit but at least I am up and about on my two feet again. Seven days ago I was confined to bed.

This poses a bit of a problem though. I'm going to have to ask my work colleagues to help me a lot more than I've had to previously. I'm not going to be able to push chairs around to set up my work space for instance. I will also have to use the lift going down stairs as well as up as I can't risk a faint. I'll have to ask for help carrying things. And this is the problem, I am very, very bad at asking for extra help at work. I like to think I'm no different to anyone else there, nonsense I know, but it makes me feel better. Now I'm going to have to be different. I know my colleagues will not mind in the slightest. In fact I'm pretty sure most will be glad that I'm finally caving in and letting them look after me but it still feels awkward.

To be fair I am just as bad at asking for help at home. I will struggle with something until either discovered or beaten and then ask for help. If beaten I sit until I'm back to normal and then seek help. If discovered I get shouted at. Of course my deception is known but they've given up trying to stop me trying to do things for myself. They know how frustrated I get so tend to opt for the quieter life and only argue with me if they actually catch me in the act. The worst thing about PH? The loss of independence, at least it is for me.

There is still no word from the Brompton about when I'm likely to be called in for my new meds. First off it was going to be early January. Then Feb/March, then definitely the first two weeks in April and now nothing. To say I'm right royally p***** off with it all now would be an understatement in the extreme. Apart from being very disappointing it is also extremely stressful. I'd hoped to be going back to work with my new meds and my increased dose and feeling so much better. Instead I'm going back in a worse state than when I left and knowing that at some point I'm going to have to take even more time off, either to have the new meds or because I've become too ill to work. It's all so frustrating because non of this is my fault and if I'd been given the meds in January as promised I probably would not have spent the last three weeks at home. That's another thing I hate about PH, the reliance on others to pull their fingers out.

However I have to really look at the positives. I know that one way or another I won't be feeling this bad for much longer. I also know that I now have a better chance of ending my relationship with PH than anytime during the last sixteen months. If things work out perfectly for me I'll bypass the new meds and go straight to getting rid of the PH altogether. What more can a girl want? I think I'm due a little bit of good luck now and maybe 2014 will be the year to deliver after all.

Next blog Friday.

Sunday, 13 April 2014

The Owl and the Pussycat

Another restless night last night but again I can't say I'm surprised. I feel like the Duracell bunny I'm just going on and on and on. I guess at some point my body will say to my brain 'enough' and I'll sleep like a log but I'm not quite there yet.

Part of the reason for my sleeplessness was my pump. I must have bent the line or lain on it or something because the alarm jerked me awake around two this morning. As I shifted to find out what was wrong the alarm stopped so I'm guessing I'm right on that count. Of course after that I lay awake waiting for it to go off again. It didn't but for me that was the end of my sleep. I hate that pump. I know without it I wouldn't be here to complain but even so, I hate that pump.

Yesterday was spent, as promised, mostly on the settee watching DVD's, though I did spend half an hour ironing. We were running out of t shirts etc. I also browsed through my cookery books and have come up with a lovely rich chocolate cake for Easter and a gorgeous way to cook lamb. I'm really looking forward to it now, I love family meals.

Today we are without Andrew. He got a call late on Friday offering him a job providing emergency medical cover for an event in Ruislip this afternoon. It is an Easter egg hunt and fare. He knows he'll be mostly applying plasters to grazed knees but he can't turn down the money and the more practical experience he gets ahead of his finals the better.

Peter has an afternoon planned washing and waxing the cars so that leaves me back on the settee. At least I'll have Smirnoff for company. He is being so clingy that it's getting a bit dangerous. Not only did he sit on my paper this morning but when I had my bath he lay across the door. When I walked out of the bathroom I nearly fell over him. Right now he's on my desk fast asleep and snoring, silly cat.

Britain's Got Talent Watch

Yay! It's back!

Last night the new series kicked off and it was just as good as ever. My favourite part of BGT is the relationship between David Walliams and Simon Cowell. It is just brilliant the way Walliams knocks Cowell down every time he starts becomes a bit pompous, which to be fair is most of the time. Of course there is also the very watchable Ant and Dec who always seem to enjoy the acts more than the audience.

The absolute stars of the show, of course, are the acts and last night we kicked off with an Owl called Rocky. Rocky was wonderful. I love Owls and this one was a magnificent specimen with the largest orange eyes I've ever seen. Despite their reputation Owls are rather stupid birds but Rocky's owner was convinced he had the Einstein of the bird world sitting on his glove. Rocky's forte was assault courses and obeying his owner's every word. Rocky was placed on a stand and immediately swiveled his head so he was looking away from his owner. This was not in the plan as in order to 'obey' his owner he first had to see him. After lots of shouting that trick was abandoned and Rocky was placed in front of a blue plastic tunnel. Again after a lot of shouting Rocky decided to give his owner a break and walked through the tunnel. By now the buzzers had gone and Rocky was scooped up and sat staring haughtily at the audience while the owner and his act was pulled to pieces. We were off to a good start.

This magnificent performance was swiftly followed by a drummer in a hamster wheel, no I have no idea either. A violinist who was madly in love with his wife, possibly because she has never told him how bad he is, and the usually cute kids act.

Acts of note were an opera singer, a dancing granny and a boy band.

The opera singer looked like Amy Winehouse. She was the act that had the sob story attached. After the usual 'I've had a terrible life' interview and shots of her mother sobbing away off stage I was less than thrilled. Personally I always think that if you have to rely on tugging at people's heart strings to get through then you haven't actually got a lot of talent. This girl had a good voice but not a stand out voice. However she will be in the live show. A tip for all you BGT watchers out there. If they've bothered to film a sob story the act always go through to the lives, often to be voted off quiet quickly, but they always go through.

The boy band was a surprise. They were better than expected and didn't go for the usual light crowd pleasing song. More to the point they all could actually sing. I suspect they are destined to go a long way in this competition because they are perfect for the teen girly vote.

The we had the granny. I hated this act, not because she was  eighty and her partner was at least forty years younger. I hated this act because I was convinced we were going to see a really badly broken hip somewhere along the way. Her partner threw her around like a sack of potatoes while she gamely hung on for dear life. Now in this year's BGT we have the addition of a gold button. This button can be pressed to allow any act through to the next round without having to go through the vote. For some reason Amanda decided this was the act to get the button.  The world is going mad!

My favourite act, and the act that should have got the gold button without question came from the Ukraine.

This act also got a bit of a back story but I was more sympathetic to pictures of war and a man bewildered by what was happening to his country than I every will be to any 'poor me' tales. The act was fabulous involving humans turned into robots via computers and lots of bright lights. It was mesmerising. The only downside was that it had to be performed in total darkness so we were denied the usual reaction shots of the audience and judges. If that act doesn't make it all the way to the finals then there is no sense or justice in this world.

Finally I'd just like to wish John Fisher the best of luck for the London Marathon today. John had a heart transplant in 2000 and has run the Marathon every year since. This will be his thirteenth. John doesn't run for money, though I suspect he collects a bit, but to raise awareness for organ donation. What a wonderful way to say thank to to you donor and how selfless to use his new life to help other get the same chance. There are no words.

Saturday, 12 April 2014

The Windmills of My Mind

First off I'd like to thank everyone for their comments and support yesterday. I'm sorry I wasn't able to reply to each of you individually but as you can probably guess I had other things on my mind. I don't suppose any of you will be surprised when I say I had a very restless night.

I've spoken to most of my family now, except Laurence, he's working this weekend and I don't really want to land anything on him after a grueling twelve hour shift. My mum was very supportive and she wasn't surprised as she had thought I'd been waiting far too long now. Andrew was very pleased and being the only person in the house with medical training was able to put some of my concerns to rest. The antibody thing is not really that big a deal. We all have them, mostly all low level and we pick them up through things like vaccines for childhood diseases, pregnancy and illness. Every time you catch a cold/flu or stomach bug you collect antibodies. If you've been abroad and picked up something nasty or had to have a blood transfusion at any point then you'll have higher levels.

Matching antibodies is never an exact science. If they held out to perfectly match every single person far fewer transplants would be done than are now. It is all a bit of a compromise and the reason transplant patients have to take immune suppressants. These drugs stop your antibodies attacking the new organs which they will see are an invader and something that needs getting rid of. By deciding to abandon finding a perfect match for me all Papworth are doing is risking provoking a stronger defence response. And all that means is I'll have to have stronger immune suppressants and be on a higher dosage for a longer period of time. Now although Andrew isn't an expert his explanation makes sense to me, especially in light of Dr Parmar's comments about more careful management post op. If all it means is popping a few more pills, well that I can handle.

I'm all packed and ready
Last night I sat at the table preparing my meds knowing that one way or another I will not be doing that much longer. I will either get my new meds or my transplant and probably very, very soon. Of course the meds are the more certain of the two but anything, I now feel, is possible.

It is really hard to describe the emotions and thoughts that whirled around in my head last night and are still churning away. I'd more or less lost hope of ever getting that transplant. I knew things were becoming worse for me and time was short. Now I feel full of hope and excitement. Yes, it could still be a long wait but my chances have improved. Of course I also feel scared about the increased risk factor, especially going for just the lungs but sometimes the ends justify the means. So I'm all of a quiver at the moment. It's like being caught in a whirlwind but that is the nature of transplant. Nothing happens for a very long time and then suddenly it's all action stations. However having calmed down a little I have to say my friend Stacie put a comment that has only just hit home. She said it was good that they had decided to move me along but bad that they felt the need too. Yesterday I hadn't thought of it that way. Today I can see her point, though they could just be fed up with me telling them how fed up of waiting I am. On a serious note I do need to keep my feet on the ground and take in all the implications. Clearly something has changed that has spurred them into action.  However I am determined to only look on the positive side of this development, change can be good.

So last night I lay in bed and funnily enough I didn't really spend that much time thinking about what had been said. Most of the time was spent thinking about what I could do afterwards. I was counting things off my fingers, climbing stairs, walking around the village, jumping into a pool. I wrote a blog a little while ago call 'The Destructive Power of Fear', well let me tell you there is nothing more powerful in this world than hope. It overrides everything so maybe fear isn't that destructive after all.

So what am I getting up to this weekend? Well I'm planning my menu for our Easter get together and preparing for my return to work. With no appointment from the Brompton and, with Easter just around the corner, unlikely to be one until at least May I figured I'd rather go back and test the waters. I will probably need a bit more help and I'm probably going to need my oxygen more but I think getting back to some normality will do me the world of good. Apart from that I'm just going to relax in front of the TV and do absolutely nothing. I've had a really hectic twenty four hours I think I need some down time.

Friday, 11 April 2014

A Little Bit Terrified.

Things moved further and faster at the transplant clinic at Papworth this morning than they have done in the last sixteen months.

I arrived ten minutes early and for once did not have long to wait. Unusually I was show straight in to see the consultant without having all the checks with the nurse first. He had a letter from the Brompton with him and questioned me very carefully about how I was feeling, how much I could do at the moment and how much more help I needed. He then gave me a very thorough check over, which again was not what normally happens. What normally happens is they chat to me about my latest visit to the Brompton then send me off for bloods and to make an appointment for another three-four months. It is usually all over in ten minutes flat.

After a protracted examination the doctor excused himself and said he'd was going to discuss things with Dr Parmar. Worryingly he took the letter with him. Now I have no idea what is in that letter because I haven't had my copy yet but obviously something was worrying this doctor and so I began to worry.

I was even more worried when the consultant returned with Dr Parmar. Dr. Parmar asked me more or less the same questions and then sat down beside me. He explained that as I'd been so stable they had been taking their time about finding a perfect match for me, hence the long wait. However there are now signs that I am becoming unstable and that I'm taking a downward turn. They have been in touch with the Brompton and have been fully briefed as to what happened last time I took a downward turn. Although I'm not there yet the fear is that, that's where I'm heading. Last time I was saved by the Flolan, this time there is nothing else.

With that in mind Papworth have decided to list me as urgent and lower their criteria to give me a better chance. Now instead of listing for heart and lungs as the first priority they are swapping me to lungs only with a marker for heart and lungs if possible. This move will increase my chances enormously. It will be a riskier operation, as my heart isn't as good as it was, and I will need more careful management afterwards and recovery will be slightly longer. They are also no longer going to match my antibodies. I have a lot of antibodies. Women with children and a history of chest infections and previous surgery tend too, however mine are all very low level. Ideally they would match them but in my situation they can be largely 'ignored'. Again it will mean more management after surgery and I'll be at slightly higher risk of rejection but again this move will increase my chances. In short the priority has now changed to 'find a match and sort out any problems later'.

Peter and I could only sit and nod every time Dr Parmar said 'is that alright?' At one stage I swear I had my mouth hanging open. Afterwards the nurse sat with us and explained that these moves are not as bad as they sound. The priority is to get me transplanted before I become too ill to have the operation. They know that when I start to reject the medication, I get very ill very quickly so now it really is a race against time. I was ushered off to have loads of blood taken and then we just sat in the car staring at each other.

We drove to Tesco in St Neots in complete silence. Went in and grabbed a coffee and a snack and then sat down, all without saying a word. 'You look shell shocked' said Peter. 'So do you', I replied. We then couldn't stop talking. There were lots of 'I can't believe it's' and Oh my God's' but in the end we decided it had to be a good thing. We trust the doctor's at Papworth implicitly and if they say they can do this without waiting for a perfect match then why not take the chance. I can't afford to wait much longer, I certainly don't want to have to wait much longer. Yes there is more risk but the risk of doggedly waiting for that perfect match is greater, especially if it never comes.

So at the moment I'm a little bit terrified but I'm also so excited. I feel there is hope once more. There is a lot to think about and, of course, I'll have to talk the new developments over with my family but in my heart I feel I'm doing the right thing for me. And ultimately that is all that matters.

Andrew's interview went well yesterday. He's worrying a little more about it than he did the London Ambulance interview but that is probably only because he wants this one more. All we have to do now is wait as they will be sending out letters sometime next week.

So two days of travelling and one big shock has left me feeling very tired but overall much better than expected. I still haven't heard anything from the Brompton about my new drug but some how that doesn't seem so important now. As a friend pointed out, maybe I'm not destined to have this drug, maybe what's happened today is going to save me from more mucking about. I really hope she's right.

Thursday, 10 April 2014

Little Things Mean A Lot

Well I probably shouldn't tempt fate after what happened last time I said this but, I feel better!

I'm not the only one enjoying the sunshine
Once again I'm back to eating normally and am frantically trying to pack in the calories before I visit Papworth on Friday. I'm onto a loser of course as there is no way I can put on six pounds and more in two days. Unless I resort to swallowing lead that is. I am gaining again slowly though and at least I'm not as light as when I first went to Papworth so things may not be as bad as I think they are. There is still no sign of my new meds, despite being promised them by the end of this week, and I still haven't had my meds tweaked but things have definitely improved to the point where I don't need oxygen to move around my home anymore.

Maybe it's the weather. The smog has moved away and it has been beautifully crisp out there. For a little while yesterday I sat in the dining room with the patio doors flung open so I could get some fresh air. It was wonderful to smell the grass and the faint aroma of flowers in the air. It perked me up so much I managed to bake a cake, yes things are definitely on the up. Of course staring out at my wreck of a garden I felt despair at not being able to get out there and do things. Thankfully Andrew has promised that over the weekend and during next week he'll get out and tidy up the patio and decking and cut the grass. That way if the weather is nice I can go and sit out on a garden chair to read without stressing about what needs doing, well not so much anyway.

This afternoon I've been promised a trip out in the car for a change of scenery. Andrew has his interview with the East of England Ambulance Service and it's the one he really wants to do well in so he's very nervous. I am not able to drive him so Peter is going to do the honours and I'm going along for the ride and some fresh air. I'm going stir crazy so it will be a nice distraction. Peter and I will find somewhere to park up and wait where I can watch the outside world. I know it is only a little thing but I'm so excited.

Then on Friday it is off to Papworth. I have to confess I'm a bit nervous about this visit as my recent illness will certainly be under scrutiny. However what do they expect? I'm so ill I need a transplant so logic dictates that I'm going to have the odd blip. They can't expect me to stay the same year in year out. I am most nervous about my weight loss but I weigh more, despite the blip, than I did when they put me on the list so I don't think that will be a cause for taking me off the list. I will be prepared for another lecture though to which I will reply that they should try being on meds that make you feel sick all the time and see how much weight they are able to gain. That is the only thing that annoys me about Papworth, they think gaining weight should be so easy.

Apart from baking a cake and sitting in the dining room I didn't really do much yesterday except read, watch TV and sleep. Yes I know that is sort of the plan at the moment, but I do feel I'm wasting my life a bit. I also feel I've fallen into a bit of a routine and it's not one I really want to be in. So it is time to try and break the cycle. I'm doing small things to help out. This morning I'm going to do a little bit of ironing, just the essentials but it will be something. If all goes well then I'll be encouraged to try other things like cooking a meal etc. What I'm trying to do is find my limitations rather than assume them.

Of course what I really want to do is try and get back to work. I know it sound silly but I miss dealing with other peoples problems and I really, really miss my colleagues and their wit. I never have a day when I don't laugh. My sick note runs out on Tuesday and I've decided to aim for a return on Wednesday. I know it may not happen but if it does then that will be a tremendous boost for me. OK, I may need some extra help until I get my new meds, and goodness knows when that will be, but I've always found that being at work can actually make me feel better. There is nothing quite like having your mind taken off things. I promise I won't do anything stupid but I do need something to aim for to kick me back into gear. It is surprisingly easy to be an ill person if your mind is set that way.

Talking of ill people. I read about another benefit cheat in the paper yesterday. This woman claimed she couldn't walk the length of a family car and then promptly posted pictures of herself on Facebook walking the Great Wall of China. I had to laugh. I mean how thick can you be? I used to think that those that cheated the benefit system must be really clever but it seems being devious is not related to intelligence.

Also in the news my paper has become a baby album for Prince George. Yes he is terribly cute but enough is enough!

Right I'd better go an wake my baby. He has requested I get him up early as he needs 'plenty of preening time'. Fingers crossed everybody.

Tuesday, 8 April 2014

Power Cuts and Premonitions

Well there I was all gearing myself up to attempt a day at work then Monday happened.

In truth things started to go awry on Sunday evening  when I felt terribly sick and breathless. I put myself to bed around eight and hoped that I'd be able to sleep it off. Although I did sleep deeply at first I was awoken in the middle of the night by pains in my arm and chest. I sat up and after a few exploratory stretches decided I must have lain heavily and once I'd got things loosened up I managed to go back to sleep. At five thirty I was jerked awake by an alarm going off. I thought I must have set my alarm for work but I soon realised that the noise was from outside and that the house was unusually quiet. We were having a power cut and the alarm was a neighbours house alarm.

By six we had given up any idea of sleep and Peter went down to boil some water for tea on the camping stove we keep for emergencies. I sipped the tea and immediately my stomach began to churn. I knew I was dehydrated so persevered only to be forced to stop half way down the cup. I lay back down and shut my eyes praying for the alarm to stop and it did! The power was back, for all of five minutes and then it disappeared again until just gone eight and the alarm just rang and rang. Honestly if I'd had a shotgun at that moment I'd have used it.

So another day was spent in bed sipping on cups of tea and fighting the nausea that followed. I have no idea what is going on but I'm becoming more and more convinced it has something to do with my meds. Over the weekend, apart from Complan, Peter, Andrew and I have all eaten exactly the same things cooked by myself. They are fine. I haven't been anywhere since my opticians appointment so it can't be a bug. A bug would have started earlier anyway. So what is left? Just the meds. I know there is something going on with them because my breathing has changed. I just hope I get an appointment with the Brompton soon and get it sorted. In the meantime I've had to get another sick note. How frustrating!

I was so ill that I couldn't manage to make up my drugs in the evening so Andrew stepped in to do them for me. I was really impressed how he handled the syringes and got to grips with everything. He was slower than me as he kept double checking everything and asking me if this or that was OK. However I preferred that to him racing ahead, making mistakes and infecting me. He even change the line for me though confessed he felt awkward fiddling around so close to his mum's boobs. Meds done I went back to sleep and woke around eight feeling a lot better and able to drink a whole cup of tea with no ill effects
This morning I managed two cups of tea and an unbuttered slice of toast for breakfast and although I feel quite weak and wobbly the nausea has subsided again and I feel much better. It is so strange and all I can say is I really, really hate PH at the moment.

So I'm having to make the best of a bad situation and have started to compile a rough inventory of where I want to visit on our planned massive holiday post transplant. I know it is all pie in the sky at the moment but I still have this real feeling that I'm on the verge of getting the call. It is so strong I can hardly stop myself from sitting in the hall with my suitcase. It is so strange and I've never felt like this before. I've had feelings yes, I think everyone on the list gets those from time to time, but never like this. Maybe it is just desperation having hit another period of instability. Maybe it is the only way I can see of getting out of the situation I'm in. Either way it is driving me crazy at the moment.

Also driving me crazy is Smirnoff who seems to have suddenly become fixated on me. He hardly left my side yesterday, even following me into the bathroom. He's become as clingy, if not more so, than Tarmac was and that's saying something. However there is something extremely comforting about having a purring fur ball lying next to you when you are not feeling very well.

On the good news front I found my heart. It was in the bottom of my transplant bag, how weird is that? An omen maybe or just coincidence? I guess time will tell.

In the news I was surprised and angered by the story of the man who tried to get into Buckingham Palace. The man is an illegal immigrant from Nigeria who has done a similar thing six times before. He also left a highly threatening message after this latest attempt. However who do you think is getting all the public outrage and 'questions' asked about his actions. Yes, of course, the poor guardsman doing his duty in protecting the Queen by pointing his bayoneted rifle at the offender. Why is it that British servicemen are put on trial, sometimes literally, for doing their job when scumbags, who shouldn't even be in this country, are allowed to walk free to offend again. In my world what should have happened is that Mr. Illegal was taken straight to Heathrow and bungled onto a plane back to Nigeria and the guardsman given a great big pat on the back. Maybe it is just as well I'll never make Prime Minister.

Right I'd better get myself settled for another day of Complan and toast and being called a 'stupid woman' if I dare to as much as set foot out of the living room apart from calls of nature. My men have become uber protective over the last few weeks, maybe they can feel something is on the way too.

Sunday, 6 April 2014

Lost Heart

I am bereft as I have lost something very precious to me and have little hope of recovering it.

For my twenty first birthday Peter gave me a small gold heart on a chain with a single sapphire stone in the middle of the heart. Since then It has only left my neck on less than a handful of occasions. I wore it all through the good times, our engagement, wedding, the birth of our boys. And the bad times, car accidents, illness and rows. I refuse to take it off for x-rays, preferring to loop the chain over my ears to keep it out of the way. The only time it has been off my neck in the last five years is when I've had surgery.

Imagine then my panic when I looked in the bathroom mirror this morning and saw the chain but no heart. I pulled the duvet back off the bed but there was no sign of it there. I scoured the bedroom floor reasoning the most likely time it came off was when I was getting undressed last night, but nothing. I've checked inside my pillow cases, I've combed through my hair, I've checked my bathrobe, the floor around my study desk, the kitchen, bathroom, settee, everywhere I can think of but there is no sign. I've thought back to where I last saw it and remembered moving the heart out of the way when I changed my dressing on Friday night. I didn't leave the house at all yesterday, not even to take stuff out to the bin so it has to be in the house somewhere, which is some comfort. Andrew was going to vacuum the house for me today but I've banned all such activity until I've done another through search. At the moment all I have around my neck is a chain and I'm not taking it off until all hope is lost.

Apart from being upset about losing my little heart I'm feeling a lot better again today. I'm eating more or less normally, though I have to be careful what I eat and the portions are small, but at least I'm eating and keeping it all down. The only thing I can't get a grip on is my breathing. The slightest activity gets me puffing like a goods train. I wrapped a parcel yesterday and had to sit down to get my breathe back, what is going on!

Of course I shouldn't be surprised. I have severe Pulmonary Hypertension. However up until a month or so ago I was unusually well and that is the crux of the matter, I was unusually well. People with my level of PH are normally very limited and on almost constant oxygen. I got away with using oxygen only when walking around, could still do some things like wrapping parcels without any ill effects and could even indulge in a bit of light pruning in the garden on a good day. I even hold down a job, which I know is unthinkable to a lot of people with my level of PH. However I put this down partially to PH being a very individual illness, it tends to affect different people in different ways, and partially down to my underlying fitness. In reality it is probably more to do with luck than anything else.

So should I really be this surprised when my PH gears up a notch or two and my fitness gears down. I suppose not really but that doesn't mean I have to like it. I am hoping that when I go in for my change of meds and they crank the dosage up a bit everything will settle down again and I'll be back to 'normal' well for me anyway. In the meantime I'm just going to have to learn to live with my new limitations. The first, and most pressing decision as my sick note runs out on Tuesday, is whether to go back to work until I get my appointment or stay off. When I saw Carl at the end of March he said he'd get me in quickly but of course my 'quick' and hospital 'quick' are two very different concepts.No disrespect to Carl, he did say he wanted me to be in the first week or two of April. However we all know what hospital admin is like and they can drag their feet like no other organisation I know. Add to that the increased hospital admissions from the smog and I suspect finding me a bed anytime soon is going to be a tall order. I would feel bad going back to work only to get a call from Carl asking me to go in on the Wednesday. On the other hand if I'm going to be delayed for another two or three weeks I'm going to go stir crazy.

I'm going to have to get used to using my oxygen more and to asking for help more, something I'm not very good at. I swear Peter is turning into Rene from 'Allo, 'Allo the number of times he's caught me struggling with something and said 'why didn't you call me, you stupid woman?' He's right of course but the bloody minded part of me just won't give in. And being bloody minded can be a hindrance as much as a help because in my mind I still don't quite get how ill I really am.

This weekend I've been on edge again. I was so convinced I'd get my call today that yesterday I finally got around to packing my bag again. I'd unpacked it a few months ago, convinced I'd never use it, but yesterday I had this compulsion to be ready. It's probably stupid old hope popping up again but it whiled away a few minutes of an otherwise dull day. Oh! That's a thought I'll check in the bag after I've finished this, my heart might have dropped off there, symbolic or what! So what's in the bag? Well currently PJ's, towel, flannel, slippers, shampoo, conditioner, face and body cream, shower gel, toothbrush, toothpaste, facial cleanser wipes, comb, hair bands, baby wipes, perfume, glasses, contact lenses, books, mp3 player, laptop, cables for charging laptop, phone, mp3 player, underwear, t shirts, joggers, socks, outdoor shoes, jumpers, mirror and make up. Things like my meds will go in last minute as you can't really store them for long or they'll go off. Basically I packed as though I was going on holiday for two weeks where I'd be stuck in the hotel room without a TV for the duration. I'm sure I've missed something out but it can always be brought in at a later date. Let's face it, for the first few days all I'm going to need is a whole lot of luck, everything else can wait.

My trip to the opticians was better than expected. My eyes haven't changed and there is no sign of any problems so I can relax on that score for another year, and I've saved myself a fortune in new glasses and lenses too.

Andrew has arrived home for the Easter break, not that I'm seeing much of him. With his finals coming up and a job offer on the table he's hitting the books hard and spends most of his time in his room. The only real sign of his presence is a sudden increase in dirty crockery and a depletion of things in the fridge. Oh and laundry. At the end of a hard day of study he unwinds with a run and deposits the resulting sweaty clothing in front of the washing machine. Not in it you note but in front of it.

Right time to check out that bag. It will mean a very careful unpack, with everything being minutely examined, and then a repack where I probably won't be able to fit everything in that I got in the first time. Such is life.