Thursday, 30 June 2011

The Times They Are A-Changin'

Today has been a good day. Pity the night didn't match. I don't know if I was worried about increasing the dose or whether I was too hot or just not tired enough but I had difficulty dropping off to sleep and was awake around four. I didn't feel tired for most of the day so I can only think I just wasn't tired enough to have a good night. I hate having a disturbed night just before a hospital visit because you want to feel 'with it' enough to take in what is being said and remember the questions you want to ask.

First stop was to see my nurse specialist to have my medication increased. He was stunned by how much I've improved over the last seven days and the improvement was reflected in last week's tests. Everything seems to have improved but the biggest change was in my BNP (no not British National Party) levels. This is a measure of how much strain your heart is under and at my worst the levels reached 215, last week my reading was 7. A normal person's reading would be around 4 or 5 so I'm probably as good now as I'm ever going to be. Naturally I am as pleased as punch about the result. They will repeat the test next week along with an echo to confirm that my heart is pumping more efficiently and of course will increase the dose again.

We also had a long chat about transplantation, my assessment has been on hold while my meds have been swapped so now I'm stable I have to be reassessed. The irony is that I still need to be 'on the list' because it is part of the condition my PCT has laid out for me having this treatment. However Carl warned me that as I have responded so well to treatment I might currently be too well at the moment. Sod's law strikes again! Still it is better to be too well for a transplant than too poorly, how they will square it with the PCT though is a tricky one. I'm sure they will come up with a compromise. The other thing Carl warned me about and I was really surprised to learn this, women are more likely to be turned down for transplant than men. Now before the feminists amongst you get your knickers in a twist, not all women just those that have had children. The reason is that when you are pregnant your body naturally produces antibodies, unfortunately these antibodies remain in the system for life and the more pregnancies the more antibodies. Normally they don't cause any harm but if you have a high level they can cause real problems with rejection. You learn something new everyday. This is not good news for me, having been pregnant five times I've probably got a huge amount of the things. They will do a test to find out at the transplant clinic so I'll tackle that one when I get to it.

After Carl it was off to see the consultant. He was equally pleased to see the improvement and will be writing to the PCT to tell them that I am benefiting from the treatment. Hopefully they will then agree to fund it for at least the next twelve months. He even gave me the go ahead to return to work but with a warning to take it very slowly and if I have any problems stop. I don't think I'll have any problems following that advice. I've had a real scare this time and NEVER want to be that ill again. I enjoy work but I don't love it enough to kill myself. I wonder how work will view my new laid back approach?

So on to the mental and emotional side. I was an hour late for my appointment with my hypnotherapist after finishing with Carl and the consultant, fortunately she was also late because of problems on the tube due to the strike. After a brief chat we both agreed that, as I'd gone through the procedure and my fear of needles is considerably less than when I started the sessions, there really wasn't any point in continuing. We left things open ended, she has given me her email and phone number and made me promise to ring her if I needed anymore help. I can't say, hand on heart, that the sessions were a total waste of time. I am more relaxed around needles now and when I take time out I can really shut off and relax instead of letting little worries encroach. However I don't think I'm a good candidate for hypnosis as I'm far to sceptical about it. And if you don't fully believe in something it will never work. I'm glad I did it though.

I don't know if it was the strike or just luck but traffic was really light today so we zoomed in and out. Different story on the way home on the M1 though. Bad accident at junction 11 causing massive tailbacks. We jumped ship at junction 8 and came home via Hemel Hempstead. It was slower but better than sitting in a traffic jam.

Rest day tomorrow, well rest and stress day. Andy Murray in the semi finals, will my blood pressure stand it? 

Wednesday, 29 June 2011

Accidents Can Happen!

Andrew's karate club is going to be saved, hopefully. They are going to re-launch to try and get some new members. So relieved he would have been so upset if it had folded.

Absolutely shattered after yesterday so decided to cheat on lunch and use a ready made curry sauce. I always keep a few jars in the cupboard for emergencies. This type came in two parts, a jar full of sauce and on the lid a plastic pot of herbs and spices to coat the chicken in before cooking. Unfortunately on this occassion the plastic pot refused point blank to part company with the jar. After much pulling and tugging the whole lid shot off the jar swiftly followed by the sauce. I was dripping. It was in my hair, all down my front and forming puddles around my feet. It didn't just get me however, oh no that would be far to simple. The whole cooker was covered, it was in the sink, all over the cupboard doors and floor. I never realised a small jar had so much coverage. I even got it all over my pump. Obviously the pump was my first priority and several damp kitchen towels later it was as clean as I could manage but still had a yellowish tinge in places. By the time Peter arrived from the study I was stripping off while trying to keep the pump and line clear of the mess. Did he help? Of course not! By the time he'd controlled his laughter I'd already sprayed everything with stain remover and bunged it in the washing machine. I left him to clean the kitchen whilst I went to clean up. By the time I returned to the kitchen I'd seen the funny side and we both kept bursting into giggles as we finished getting the kitchen straight. It goes without saying that after that curry was firmly off the menu, we settled for salad in the end. Next time I'll do home made sauce, much safer.
Tomorrow is another trip to the Brompton to get my dose increased. I have my anti sickness tablets at the ready, though having read the list of side effects I'm not sure which would be the better option, so I'm all set. I am quite eager to see how much better I will get on the higher doses. I'm feeling pretty good now so if I get even better that will be such a bonus. After a month's break I also have an appointment to see my hypnotherapist. It will be an opportunity to tell her how her therapy didn't work when I needed it most. It's not her fault I know, the therapy doesn't work for everyone but I was bitterly disappointed that when it came to the crunch it failed me so completely. I thought I was doing really well during the sessions but I suppose it is easy to feel relaxed about something when it isn't actually happening. I suspect I will politely call it a day on the therapy and tomorrow will be my last session. I guess hypnotism is just not for me.

Tried to watch the tennis this afternoon and got throughly pissed off by some idiot across the road trimming a hedge. If he'd just got on with it, that would be fine but he did a little bit, stood back to admire the inch he'd cut and then did an inch more. The constant on and off of the hedge trimmer was driving me up the wall and went on for hours. How close did I come to screaming 'shut up' out of the window? You really don't want to know.

Laurence has twenty days holiday after today (I know but he hasn't taken any time off since he started and has lots of overtime built up) which he is going to use to go house hunting. Peter and I have been allocated 'tasks'. Peter is going with him to see the mortgage advisor, I am to accompany him on the house viewing. This suits me fine because I love looking at houses. I'm not sure I should be encouraging my eldest to fly the nest but as my mother pointed out yesterday, I was married at his age.

Andrew is having a bit of trouble with some kid who thinks he's a streetwise hard man. Andrew goes to a kung fu club on Tuesdays and this kid is a member. Over the last few weeks he has tried to get Andrew to buy everything from weed to coke from him, This week's offering was ectasy. When Andrew firmly turned him down, again, the lad became aggressive and tried to take Andrew on. This lad is only a white belt so being a black belt Andrew could do him some real damage if he chose to but instead walked away. I am so proud of his attitude. It is a real shame he is getting this hassle though as he is now considering leaving this club. I've tried to get Andrew to tell the club organiser about this kid but Andrew feels that as he has only been going a little while and this kid is a long term member he won't be believed. It annoys me that idiots like this can ruin the enjoyment for someone else. I hope he comes up against someone less restrained than my son and get's taught a lesson. And the sooner the better.

Tuesday, 28 June 2011

Singing In The Rain

It has been a day for having the weight lifted off shoulders. So many good things have happened I hardly know where to start.

Went to my GP first thing to get some anti nausea tablets in preparation for my next dose increase on Thursday. I'm now reaching the levels that most commonly cause problems so have been told to be prepared just in case. In some ways I wish I didn't know I might be sick because it is bound to play on my mind and I'll think myself sick. Hopefully these things will stop it in it's tracks.

After GP it was off to do the Tesco run, we didn't have much to get so I decided to go without the chair and see how I got on. Would you believe I managed without having to sit down or lean on anything! It was very slow progress but I did it! The rain started on our way back and I breathed a sigh of relief, no trundling around with a watering can for me today.

Arrived home to find a big brown envelope from the DWP sitting on the mat. I ripped the envelope open dreading what I was about to read. To my utter astonishment my claim for Disability Living Allowance was successful, not only do I now have the higher rate of mobility but also the higher rate of care. Apparently having a twenty four hour iv infusion means I need twenty four hour care and so I'm entitled to the higher rate. I felt like the sun had come out again, even though it was pouring, no tribunal for me this year. They have only awarded me until 2014 though as I have been put forward for transplant so by the time the next review comes around I might not need the care I'm getting now. Understandable I suppose but irritating. Still I really cannot complain, I've got more than I was expecting.

Feeling good I decided to visit my work colleagues this afternoon. This would mean driving, something I haven't done with the pump yet even though I was told it was OK to do so over a week ago. I was worried about the seat belt rubbing on the entry site and my fears were well founded, I was quite sore by the time I arrived. It was lovely to see everyone again but quite nerve wracking. No one that I know has seen me with my pump yet and I wasn't sure how they would react. I shouldn't have worried they took it all in their stride. They were curious, of course, and asked lots of questions but no one went 'yuck' or seemed to have a problem with it. They all thought I looked really well, which helped the confidence and made me feel less like a freak. Liza overheard me saying about the seatbelt rubbing and instantly offered a padded cover, how kind was that. I tried it out on the way home and it really helped. Just to prove how normal everything was two of my colleagues decided to have a 'frank exchange of views' while I was there. Nice to see things haven't changed. Going back to work was one of the things I was most worried about, seeing my colleagues again I see that I was being an idiot, to them I am just me no matter what bits and pieces I have attached, it proves what a great bunch of people they really are.

Driving home through the rain I felt real happiness again and found myself singing along to the radio, something I haven't felt like doing in months. I just know I'm going to pay for all this exertion tomorrow but what the heck, as long as I can prop myself up enough to watch Murray defend his corner in Center Court I really don't care.

Monday, 27 June 2011

Here Comes The Sun

It was so hot I could hardly move. I lay in a darkened living room watching Murray thinking all the stress was not good for me. I think Murray should carry a health warning for all those with heart/blood pressure problems. The cats are also having problems and are tetchy to say the least, they keep looking at me as though it is all my fault. At least Murray won in straight sets so the anxaity didn't last for long. Roll on Wednesday when we have to do it all over again. Thought we were going to get a break in the weather around three when big fat raindrops fell but they evaporated on hitting the ground and then stopped falling altogether within a few minutes and so not only was it hot but it was also humid, brilliant!

After the excitement of the Murray match we endured the excitement of Costco, stores have been seriously depleated since I went into hospital so some urgent stocking up was needed. The trip needed a wheelchair, again, but it was very quiet so we whizzed arouund without any problems at all. The weather combined with the late hour meant we decided to forego the trip to IKEA to look for storage solutions for the drug mountain that is currently sitting in our hall. We will tackle that one later in the week when hopefully it will be a bit cooler.

Our new bins from the council arrived today. When the drug mountain arrived it quickly became apparent that our waste output, especially paper and card would increase by almost half what we produce now. As our current bins were full to capacity each fortnight we knew we needed more space so called the council. We explained the problem and they were very quick to offer to swap our current bins for bigger ones, they even do a special bin for medical waste, which I was unaware of. So we now have larger paper and general waste bins and a special bin for lines rubber gloves etc. The needles are removed in a sharps bin by Healthcare so no need to worry about them and the syringes can go for recycling. The cassettes go in the medical waste as they usually still have medication in them when discarded. all sorted so one more thing not to worry about.

Talking of Healthcare at Home I had a welcome package from them today explaining their system, providing emergency numbers and giving me the name of my personal contact person. They also included a spreadsheet detailing all the stuff I should get delivered. However, and this is the clever part, they will phone two weeks before my next delivery is due. Using the spreadsheet I have to count up how many of each thing I have left and pass the figures when they phone. They will then work out how much I need for the next month and deliver it two weeks later. This way I'll never run out of stock or have too much of something. Hopefully this will reduce the monthly mountain to something more managable, like a hill. Will the system work? Well I expect there will be teething problems but it all sounds quite promising.

This evening I'm lying here again watching Nadal. The sun has long since disappeared behind thick black clouds and it is hot and humid and very, very still. I've had to water my tomatoes as the promised rain has yet to arrive and they were beginning to droop. I will be so disappointed if we don't get a storm or at least a heavy shower to freshen the atmosphere. The cats are very restless and jumpy which I am taking as a good sign.

Andrew is off to a meeting about the future of his Karate club tonight following the sudden death of one of the key trainers. He is worried that the club might close down as it was already struggling for members. I hope for his sake they decide to carry on as he will be so disappointed if they fold.

I've got to get off my backside in a minute and prepare my medication for the next twenty four hours. It is too dammed hot to be fiddling with syringes and needles with hands covered in a double wrapping of sterile surgical gloves. I shouldn't grumble at least I only have to do it once a day and it really doesn't take that much time. If only it would rain and cool things down, please!

Sunday, 26 June 2011

Hot, Hot, Hot!

I don't, well not this hot.

The day got off to a bad start when I managed to drop my toast, butter side down of course, in my lap. I then got butter in my hair when trying to clean myself up and to top it all off I dropped the book I'm reading into the bath water. I'd just put a bath bomb into it so the book smells gorgeous and the pages are a delicate shade of pink but sodden. After spending all day in the full sun of the patio it is still quite damp so may have to start reading something else tonight.

I survived the rest of the morning without incident until I tried to make lunch and spilt pasta all over the floor. I eventually made something vaguely edible and got it onto the table where I knocked over a full glass of cranberry juice. I was not allowed to clear away or wash up so retired to the front room where I couldn't do any more harm.

I spent the whole of the afternoon on a lounger in the shade of the decking unable to summon enough energy to do anything. I feel an awful lot better today, my tum has settled and my throat has cleared up but I'm sneezing like hell, maybe it is time to consider hayfever as the cause. I'd be surprised though as it isn't something I'm usually prone to. What I'm not coping with is this awful tiredness, I am usually so active but the slightest exertion wipes me out. I'm hoping that this is another side effect and will pass in time. Unusually the day was not punctuated by roaring motorbikes from the local scramble track, screaming kids, arguing adults or the vile smell of barbecue. It was truely peaceful for once and I could hear the insects buzzing and smell the roses, bliss.

The Grand Prix I was so looking forward to was one of the most boring I've ever seen, not even a breakdown to lighten the tedium. Maybe it was too much to expect the excitement of Canada but it was like a never ending game of Scalectrix. Tomorrow looks more promising for getting the adrenaline going with Murray on court and hopefully heading towards the quarter finals. I do hope he makes it this year but I don't know if my nerves could stand watching him in the final. So one step (and one heart attack) at a time, and here's hoping for a thrilling and successful match tomorrow.

My pump caused a bit of excitement today when the alarm went off, twice. The first was caused by air in the line though careful examination found nothing. A few flicks of the line and the alarm stopped with no repeat so if there was air it obviously cleared. The second was caused by a battery failure. I have to change the batteries every week and the set in the machine were only three days old so gave me quite a start. Note to self ALWAYS carry spare batteries, another thing to remember.

Saturday, 25 June 2011

Talking 'bout My Generation

I have to ask, what is the point of Glastonbury? I know all about the 'experience' of  'being there' but if the 'experience' means being cold, wet and covered in mud then that is an experience I'm willing to forego. I mean come on, would any sane person look at the quagmire and think 'lovely, must go there next year'? Maybe it's my age but I like to think it is my common sense that considers watching it in the comfort of my own living room where I can actually see AND hear the acts is better.

So sad to hear that Peter Falk has died. I absolutely loved Columbo when I was younger and even now try and catch the re runs where possible. When I think back to it the hero's of my youth were not all pretty boys, most were down right ugly, think Streets of San Francisco and Karl Malden. OK there were some but they were more like shop dummy's than real men, thinking Hawaii 5O here.I liked Columbo because I liked the way he worked things out, I must have been terribly naive when I first watched them because now I can tell 'whodunnit' within the first few minutes. The detectives of today's shows are not people you can care about and the shows themselves are more style over substance. Sometimes progress is not a good thing.

Talking of progress I had an unusual phone call this morning. A man from the DWP rang (yes I know, on a Saturday) and said he was about to make a decision on my claim but needed some more information on my change of medications. After establishing that he was who he said he was, well wouldn't you be suspicious about a civil servant working on a weekend, I explained all about the pump and the difficulties it created. He was very nice and we talked for about half an hour, mainly about what help I needed from others to look after my pump. He mentioned the fact that I'd had to go to tribunal last time and although he didn't say so outright he gave the impression that this wouldn't happen this time around. He actually mentioned increasing my entitlement because as far as he was concerned having the pump meant needing twenty four hour care. As though not being able to do anything for myself BEFORE the pump meant I didn't need care! One thing that he said that was interesting is that the new criteria required a claimant to need a certain level of care for at least three months before any claim or increase can be granted. Also you have to expect to need that level of care for at least six months. How stupid is that! OK it is easy to know how long you've been ill but impossible to gauge how long you are likely to continue to be ill unless you have a long term condition. For me, I admit, it is easier than for most as I know that I'll be on the pump until I get a transplant but not everyone can tell how longer they are going to be ill for. I did point out that I am terminally ill and that would indicate that I'm likely to be ill for much longer than six months. Anyway I think I satisfied him and he said I would be getting his decision in the next week or so. From what he said it sounds as though the question is no longer whether I'm entitled to what I already get but whether I meet the criteria for an increase. I just hope I've read it right as I don't know if I've got the energy for another fight. Though as Peter pointed out just turning up in my wheelchair with my pump and oxygen would probably win my case without me even having to open my mouth. That's not the point though, I shouldn't ever have to take it that far. I'll let you know when I have news.

I haven't felt to well today. I have a sore throat and a stuffy nose. It would just be my luck to go down with a cold just as I was beginning to feel better. I have a GP appointment on Monday for a check up so will hopefully get myself sorted out before it really grabs hold. Being ill will delay my drug increase, if you are already ill it is more difficult to gauge any side effects, so naturally it is important that I shake this before Thursday. In the meantime I'm gargling with cider vinegar and honey in the hope of staving off the worst of it.

The planned trip out has been delayed and I've spent the afternoon trying to follow the tennis. I say trying because annoyingly I keep dropping off and missing large chunks of it. I'm now not sure if the tiredness is part of my cold or one of the side effects, bloody fed up with it whatever.

Friday, 24 June 2011

Is This The Way Life's Meant To Be?

My delivery of drugs arrived this morning, OMG!

Yesterday I didn't feel to hot. I had no appetite, a slightly upset tummy and felt totally exhausted. I was warned this might happen as the drug dose increased but it was still a shock to feel poorly again. A visit to MK cheered me up though and I actually ended up need a chocolate hit, that Crunchie was delicious. I'm still not well enough to walk around a place as big as the shopping centre so used the wheelchair for hopefully the last time. I went on a bit of a spree stocking up in Lush and getting a lovely bag that will not just carry my pump but also a few other bits and pieces such as my phone and purse without being the size of an aircraft carrier. I really enjoyed my afternoon out but once home I collapsed on the bed and slept for hours.

Today I'm feeling better, the sicky feeling has gone and I'm eating but not much. I feel more awake but still needed an afternoon nap. I used the tennis as an excuse to lounge in front of the TV for most of the day. I'm in that irritating half way stage where I don't feel ill enough to ignore everything and let the others do all the work but not well enough to take over and start fixing it myself. Arrrggghhh, the frustration!

Someone who is no longer frustrated, or huge, congratulations to Amie on the birth of her beautiful son. Can't wait to meet him.

As mentioned at the beginning of this post my drug delivery arrived in five huge boxes. Stacked one on top of the other they reach the ceiling. I really don't know how we are going to store all this stuff. No one warned me when I agreed to this treatment that I'd have to get an extension built. I feel a trip to IKEA coming on.

Despite the problems with storage I think I have adapted to my new routine very well. It is certainly less intrusive than the three hourly routine of the Iloprost. I've swapped over my drug prep and line change to the evening as I have more time and feel less rushed. Doing it in the morning always makes me feel rushed, especially if there is somewhere I need to be during the day, such as a hospital appointment for instance. I've got it down to forty minutes now and am only double checking rather than triple checking. I'm still changing the dressing in the morning after my shower/bath. I am paranoid about getting the site wet as that is the most common cause of infection. I tend to have my shower and then rip the dressing off immediately afterwards and wash the area with a sterile cleaner before redressing with sterile gauze. I'm sure I will get more relaxed about it eventually. The changing over of the pump and cassette is now a ten minute procedure, something I will be able to do at work without any problems. I think the trick is to be relaxed but not complacent.

Going out with the pump hasn't caused me to much grief so far. I have only caught one person staring at me when my line escaped from my bag and hung down onto my leg.  I have developed a method of coiling the line and tucking it into my bag or jeans pocket. It does escape from time to time but mostly, apart from a couple of inches between me and the bag, it remains hidden. Again I'm sure it is something I'll get better at.

I haven't had any instances of throwing the pump across the room or feeling angry or sorry for myself yet. This surprises me considering the mini breakdown I had in the hospital. Maybe it is to new, maybe I am so grateful to feel better that I have just accepted this is the way it must be. Who knows? I'm sure there will be more mini breakdowns, there has to be but at the moment I am content with my lot. As a close friend told me, anything is better than not being here. Of course not being here is now closer than it was. I've been warned that stopping the pump could result in death within a few hours.The drug is so powerful that a sudden stop will mean my body will react to not having it and I will go into a PH crisis that I may not recover from. That is really scary. Also when this drug stops working, as it inevitably will over time, then there are no other options apart from transplant. This has obviously got me thinking about what I want to happen afterwards. I have already decided that I want the Time Warp at the funeral. That song always makes me want to get up and dance and I think it would be nice to have a bit of laughter in the church. As for the rest of it well I'm still thinking about that. One thing I am really definite on though is to be cremated and have my ashes buried with my son William. That will upset my mum who would like me buried in Wales but my family is here now, besides as I keep telling her, I intend to outlive her.

I know all that sounds depressing and upsetting but it's not, not really. Unlike most people I know what is coming and so, being the control freak that I am, I can plan exactly what I want. I call that a bonus.

Read in paper that the donor register has now hit an all time high of 18 million in the UK. This is brilliant news, there is more hope for people like me than there ever was but more donors are still needed as even 18 million only equates to one in three adults. At the same time news of successful stem cell treatment is also being reported on the PHA website. So there is hope out there, I just wish it would hurry up. 

Wednesday, 22 June 2011

I Can't Stand The Rain

The expected delivery finally arrived just after nine last night so crisis averted, the next day delivery from Royal Mail still hasn't turned up, surprise, surprise!

Another late delivery is my colleague Amie's baby who was due on 3rd June. Amie was induced on Tuesday night and we are all on the edge of our seats. So far no news but also no updates on Facebook so I'm hoping things are progressing.

Early rise today as I had to be in the Brompton by ten which was a shock to the system after several weeks of getting up when I was ready, however once on the road I felt remarkably perky. The journey in was easy for a rush hour trip into London and we arrived with at least half an hour to spare. Back on the ward my wound was checked and was found to be fully healed and showing no signs of infection. My dosage was increased from 10 to 12 and again I showed no signs of adverse reaction so after an hour I was allowed home. I am returning on the 30th for another dosage hike. I was also told that after the next dosage increase, provided I feel up to it, I can consider going back to work. Fantastic! I know it seems strange to look forward to going to work but it is a sign that I am better and that life is returning to normal.

As we left the hospital it started to rain, it was only light and we didn't think anything of it. As we drove past Selfridges it suddenly started to hammer down and pedestrians started running everywhere seeking shelter. The number of near misses we had as people dashed across the road in front of us oblivious to the traffic, thank goodness the traffic was crawling or we would have hit someone for sure. By the time we reached Brent Cross the rain was light so we looked forward to a trouble free run up the M1. WRONG! I have never seen rain like it, sod's law saw us just passing Scratchwood services when the heaven's opened. It was more like trying to drive through a waterfall than a rain shower. Thankfully traffic was light but most of the vehicles didn't have any lights on which made it difficult to see them, very scary. Just as we were debating getting off at the next junction so we could park up and see it out the rain began to easy and the sun suddenly came out. Crazy weather even for a British summer.

Home and a late lunch then an afternoon in front of the tennis, slept through Venus but managed to wake up in time to see Murray storm to another victory. Might get a trip out to to MK tomorrow, I need to get some tops with thicker straps to hid my dressing. Any excuse!

Tuesday, 21 June 2011

Please Mister Postman Look And See If There's A Letter In Your Bag For Me


Bloody Royal Mail! When I left the hospital I was packed off with, what I was assured, was a month's worth of everything I'd need to sort my pump and line out. When I got home I discovered that the most essential piece of kit, the line that feeds the drug from the pump into my catheter was in short supply, ie only four packs. Fortunately Healthcare At Home rang yesterday to do a supply check and arrange a delivery. I informed them that I would be using my last line today (Tuesday) and desperately needed more. She said she would make sure I got a delivery of the line today (Tuesday) and the rest of the supplies would follow on Friday. The things I needed desperately would be sent via Royal Mail special delivery with a guaranteed next day service. Did it turn up? Of course not! I decided to wait until after lunch as sometimes we get parcels arriving early afternoon but when nothing had arrived by two I decided to call Healthcare. They were brilliant and are sending some lines out by motorcycle courier and should be with me within two hours. Healthcare are sending a weeks worth so I will always have a week spare in case of problems such as damage or splitting, or of course further delivery problems. The moral of this story is DON'T TRUST ROYAL MAIL, especially if the delivery is important.Fortunately my Friday delivery will be by Healthcare's own courier service so should go without a hitch.

Trip to the Warfarin clinic today and my first trip out with my pump. I was able to hide the pump and wires pretty effectively and it looked as though I just had a small bag slung across my body. In the clinic the eagle eyed nurse spotted the thin tube leading from the bag to me. However her questions made me think that she wasn't really interested and had her mind firmly elsewhere.
'Oh what's that?'
'It's an iv pump to deliver drugs straight into my bloodstream.'
'Is that for your Warfarin then?'
'So how long have you got to wear that then?'
'For life.'
'Aww, so six months then.'

After being given six months to live I decided I needed some fruit so Tesco's it was. I rejected the offer of a wheelchair and decided, as we were not getting much, to try getting around under my own steam. The walk was painfully slow and with frequent stops but I made it to the fruit section and the cream section and came away with strawberries, peaches, grapes and a large pot of cream. Peter did all the carrying or I'd never have made it but it was a small step back to normality. Once home I lay one the bed and slept for a couple of hours then staggered downstairs for some strawberries and cream in front of the tennis.

Tomorrow I'm back at the Brompton for a check up and to have my dose increased. At the moment I'm on 10 and my target it 15 - 20 micrograms per kilo body weight per hour. Glad I don't have to do the calculation I can tell you. I am not anticipating any problems as I haven't had any so far but I confess to feeling a little bit excited as any increase should mean a further improvement in my health. My only wish is that I didn't have to go back to the ward so soon, I don't really feel 'back home' properly yet so going back to hospital, even just for a few hours is depressing. However I want to get better so it has got to be done.

I will be able to drive again next week as my wound has now fully healed. It is a bit of a pain that my line site is just where my seatbelt comes when driving. I wear a cotton pad over the entry site so hopefully this will provide enough cushioning. If not I'm going to have to get a pad of some sort to make things more comfortable.

Early to bed tonight as I've got an early start tomorrow, I have to be there by ten but it will be worth it if i can make it to the biscuit aisle next week.

Monday, 20 June 2011

I've Got To Admit It's Getting Better, A Little Better All The Time

Andrew is back on solid food, albeit very soft solids such as mashed potato and pasta. Looks like he is finally on the road to recovery. He was supposed to be going to karate tonight but is still reeling from a call he got on Satureday from the club leader to say one of the trainers had died. The man had been climbing Mt Kilimanjaro, climbing for charity was his thing apparently, and had to turn back half way up because he didn't feel well. Back in the hotel that evening he was in the bar having seemingly recovered and feeling fine when he keeled over with a massive heart attack. What an awful thing to happen.

Watching another Andy at the moment and I'm not sure it's good for me. He is one set down and not exactly on sparkling form. He has at least got to make it until Sunday as I'm grounded until then. After that if he goes out at least I'll be able to potter in the garden or bake to fill in my afternoons.

Last night I had one of the best night's sleep in months. Finally able to breath lying down and minus the cough I slept right through. Recovery isn't spectacular as it was when I started taking the Iloprost but there is a small steady improvement everyday, even though my dose has not been increased since Friday. My next increase is on Wednesday and I can't wait. Normality is just out of reach at the moment but the next increase might just allow me to touch it with my fingertips.

It has been nine weeks since I put in my renewal for my DLA so following their instructions I rang them to find out the status of my claim. I also needed to tell them about the new medication and the fact that I was in need of more care because of it. I got through the automated phone system surprisingly quickly and was speaking to a real person in less than five minutes. The woman I spoke to was very helpful and took the new details down all the time muttering 'you poor thing' which was a little irritating. Anyway my claim is with the 'decision makers' so she was going to hot foot my new information over to them so it could be included in the decision process. She said I should have a decision within the next two weeks. Why do I get the feeling I'm going to have to appeal, again? Yes it is fatalistic but like most people with PH I've had to appeal every single claim I've made in relation to this horrible condition. Why should this time be any different? The best I can hope for is that they turn me down early enough for me to appeal BEFORE they stop my allowance this time.

Off to my local hospital to attend the warfarin clinic tomorrow. They are really obsessed with people using mobile phones and whenever one goes off there is a chorus of voices demanding that all phones be turned off. My pump makes a small whirring sound every three minutes as the drug is pumped in and I cannot wait to be shouted at. Well if I have to wear it I might as well get some pleasure out of it don't you think?

Sunday, 19 June 2011

One Step At A Time

Yesrterday was going home day. I haven't had any reaction to the drug so far and I've got the hang of the drug prep and pump change over so I was considered safe and competent enough to look at myself. Although glad to be out it is scary to be away from the safety net of my specialist team but the whole point of having this drug in the first place was to get my life back.

By midday I was being loaded into the car with all my stuff for a dash up the M1 and home. Fed up with hospital food we stopped off on the way for a double cheese burger, chips and coke. I don't usually eat junk food but this was the most delicious meal ever. Once home the drugs and accompaning bits and pieces were unloaded and dumped in the hall and then the great 'where are we going to put all this stuff' debate began. Unable to come up with any viable solution they remain in the hall. I was delighted to see my boys and of course the cats. Unfortunately I was unable to hug either son as Andrew still has tonsilitis and Laurence had the beginnings of a stinking cold so the cats got double loves much to their disgust.

The evening pump change passed off without a hitch and then bedtime. It is not until you have a good night's sleep that you realise how tired you are. Sleeping in hospital is difficult at best, it is never fully dark and there are always people coughing, moaning or talking and machines beeping away. To sleep in pitch black and complete silence was a real treat and I slept right through until nine o'clock.

A leisurely breakfast and the newspapers and then it was time to tackle the mixing of the drugs. With more room to work in and without constant interuptions I managed to prepare two cassettes in forty minutes flat. I'm still double checking everything, which is slowing me down but at this stage I'd rather be a bit slow than make a mistake that might put me in danger. I cooked a very simple pasta for lunch and it was wonderful. Maybe my previous lack of appetite had more to do with the food than the drugs. Fed up of carrying my pump around in my hand and disliking intensly the bag that came with the pump I spent the afternoon making up a bag of my own. It looks like a small shoulder bag and, if I do say so myself isn't a bad effort. It is only an experimental verson but now I know what I'm doing I can find some different fabrics and make a selection up.

Tomorrow it is off to the GP for yet another sick note, hopefully my last and then, if the weather is good, that longed for trip to the river to see the cygnets. And of course Wimbledon starts tomorrow!

Friday, 17 June 2011

Walking Back To Happiness

Well the real reason for being put in a side room became apparent this morning when one month's supply of drugs arrived. Three boxes big enough to house mircowaves and three enormous bags. They are now stacked up in the corner waiting for tomorrow. The promised plasma tv sized boxes did not materialise because they had run out, hence the bags. Maybe that's as well as we would never have fitted them into the car. I have had to ring Peter and warn him NOT to bring his little sports car, we need a boot, a very big boot.

Was allowed off the ward for a stroll down to the newsagents this afternoon. Managed it a lot easier than when I first came in and only had to stop once instead of the half dozen or so times previously. I am now on half dose but the plan of action has changed again. I am to go back early Wednesday to have the dose increased and to see the consultant but only for the day. I will then be given detailed instructions on how to increase the dose myself and will do that the following Wednesday then I'll have to be seen by the doc a week later. They have decide to do a gradual increase instead of the quick ramp up they had planned as they believe this will be the best way of minimising any side effects.

Had my first proper bath this morning, I wasn't allowed to do this in ICU and had to have a 'good wash' instead. No real problems but balancing the machine on the bin and trying not to let the line dangle in the water was trickier than I thought it would be. I washed my hair in the sink, again not ideal, but felt so much better afterwards. I have to wait another week before I can have a shower to make sure my wounds are completely healed. Even then I have to wrap the line in a special cling film to stop the connectors getting wet as this could cause infection. I'm going to have to work out a way of doing this things but I'm sure I will get used to it.

Been given the go ahead to go home tomorrow by the consultant himself, I cannot wait, I know they said I could yesterday but he confirmed it this morning. As they have said I can go. of course I want to go NOW! The consultant also  informed me that I am now on Papworth's transplant list as well as Harefield's. I didn't think individual hospitals had their own lists, I thought it was a national thing, maybe not, I will have to find out.

Not taking my Iloprost has really been weird today, I have been suddenly noticing the time, panicking because I am late and then realising I don't have to take it. Preparing the infusion still takes me about 3/4 of an hour but at least it is only once a day, already I see a benefit. The downside is that all this extra time on my hands means I am bored. I'm quite frankly fed up with reading, listening to music and surfing the net. Funny how doing the things you usually look forward to become a burden if you cannot do anything else.

One more sleep!!!!!

Thursday, 16 June 2011

I'm Still Standing, Better Than I Ever Did

Watched one of my room mates face plant his supper last night. He was groggy from all the pain meds and had been given some soup. He was eating said soup when I noticed he had closed his eyes with spoon suspended between bowl and mouth, I thought he was just taking a pause or had come over a bit queasy and was about to alert the nurse when, splat! He was ok, just fell asleep mid meal.

Another full day, though I am getting faster at the drug prep and pump change over. Drug has been increased again and I appear to be tolerating it well. Tomorrow they will increase it again to half dose and the plan is to send me home for a week then bring me back in overnight to increase it again. This will be repeated over the next few weeks until I'm on the full dose. I am also decreasing my Iloprost use and tomorrow finish it altogether, maybe my asthma will settle down now. I was judged to be out of danger by lunchtime and removed from ICU back to my original ward. I've been put in a side ward this time so I have more room and some peace and quiet to get on with my drug prep. I don't mind as a quick look at my old bay revealed that the vomiter was still with us. The plan now is to send me home late Saturday with half the pharmacy, no not kidding, three boxes big enough for very large plasma tv's are coming with me and that is only a month's worth. Peter is going to have a fit and I've no idea where we are going to store it all especially when the three month delivery turns up.

Today I walked down the whole length of the ward without needing oxygen during or after, I think I'm going to be ok.

To give you some idea this is what I use for every change.
1Cadd pump, charged and programmed.
2 Cadd pump cassettes
2 10ml syringes
2 50ml syringes
4 needles
2 bottles flolan
2 bottles buffer solution
2 filters
2 sets of surgical gloves
1 sterile pack (contains sterile sheet for table sterile tray to hold stuff and rubbish bag)
1 bung
1 flexable drug line
2 sterile wipes
1 bottle antiseptic hand wash
Was I daunted about doing this, you bet I was. The two main dangers for me are germs and air bubbles, either one could kill me so getting it right is vitally important. I will get quicker but at the moment I am triple checking everything.

I was supposed to be going to a Christening this Sunday but have had to pull out, I know I am not going to be anywhere near well enough. My friend was disappointed but fully understood. We have promised to meet up in a few weeks when I am feeling a lot better.

Thundered again this evening, my room has a lovely view out across the city and watching the lightening dance across the sky was wonderful.

Only two sleeps to go, yippee! 

Wednesday, 15 June 2011

Three Men And A Little Lady

ICU is exempt from the mixed ward rule for obvious reasons so I have been joined by three octogenerian men. My favourite by far is Albert a retired doctor. He is terribly ill but still keeps the nursing staff on their toes demanding to know exactly what drug he is being given and the dosage, then recommends something better. He thinks I am a doctor and keeps trying to engage me in deep and meaningful conversations about the 'state of the health service today'. The actual doctors keep getting lectured on where they are going wrong, they are so patient with him. Oh, and he thinks I'm the same age as him, which worries me a bit.

It is quite scary in here, I have my own nurse who fusses over me continually, adjusting my bedding, fetching tea and monitoring all my vitals, so far we both agree I am still alive. Being stuck in bed is quite tiresome so thank God for laptops and BBC iplayer. Today I have been allowed to wander the few feet to the loo and back, I am going to the loo a lot simply because unhooking and reattaching my monitors give me and my nurse something to do. The result of all this activity is that my poor appetite is now non existant and not even the lure of a blueberry muffin rubbery enough to bounce across the ward can tempt me. Unfortunately this worries my nurse, and she is now in hyperdrive trying to get me to eat something.

The drug infusion was doubled this morning and I had a little wobble when I came over all sicky but the feeling passed within half an hour. I can't really tell if it is doing any good being confined to bed but I have been using my oxygen less and my cough has decreased. I've been a bit tearful, I think the reality of my situation is beginning to hit home. Once out of the role of patient I'm sure I'll bounce back, especially if I start to feel well again but at the moment I'm tired, scared and vunerable and I don't like feeling like this one little bit.

Tip of the day, never be on an ICU ward when the power gets cut. Pandemonium just isn't in it. all I can say is thank goodness I'm battery powered. Life ain't grand at the moment but I think it might just be getting better. 

Tuesday, 14 June 2011

Every Now And Then I Fall Apart

Today has been rather traumatic to say the least. I had a major, major panic. I hardly slept last night as I was going through how much my life would change with a pump attached to me 24/7. All the things I will no longer be able to do, in the early hours the problems seemed to just grow and grow. This morning I just freaked out. I didn't want it, I'd put up with how I am and make the best of it. I ended up packing my bag and left the ward. I got as far as the front door and stood there trying to work out what the hell I did next. I don't know how I got myself and all my bags to the front door as at the moment carrying anything is a struggle and yet I'd made it from the fifth floor with a heavy suitcase, laptop bag, handbag and drug bag. I can't even remember how I got there. I phoned Peter and sobbed down the phone that I'd changed my mind. He suggested that I go to the PALS office and see if they could help so I dragged my stuff along the corridor and knocked on the door. The poor woman inside must have wondered what had hit her as a near hysterical, sobbing, breathless woman tumbled into her room muttering incoherantly about wanting to go home. She calmed me down and got one of the women cardiac consultants to come and talk to me, they were both brilliant and could see exactly where I was coming form. Half and hour later I was back on the ward.

When the time finally came to start the treatment I was in tears again, if I could have walked I would have but my previous adventure had knackered me so I couldn't go anywhere even if I tried. I couldn't believe how I felt after hoping for this for so long. How stupid! Anyway, three hours in to treatment and I'm doing well, no improvement yet but a bit much to expect on such a small dose. On the plus side no bad reaction and no side effects, maybe I'm going to be OK after all.

Apart from the bit of entertainment provided by my panic attack it's been another dull twenty four hours and the other residents of the ward were in equally morose mood and it has been a day of tears. Most of us are coming up to our first week in hospital while a couple are past that and well into their second. The only bright spot was the diabetic lady who was caught out indulging her love of biscuits and tried to lie about what she'd been eating. Funny yes but I wonder if she realises the damage she could be doing to herself. Some people are their own worst enemies, including me.

Lack of sleep, anxiety and excitement have really done the triple whammy on me and writing this is the last thing I'll be doing before trying to settle down for a good night, I hope. If I continue to be stable throughout the night they will be doubling the dose tomorrow, something else to look forward to.

Monday, 13 June 2011

I'm Just Sitting Watching Flowers In The Rain

I should have been watching Andy Murray in the Queen's Club finals but the weather had other ideas. it then got above itself during the Canadian GP but at least Button won, in the end. Apart from that Sunday had to be the most boring day ever.

Today was different, today had so much going on I feel completely washed out. Started out with a tutorial on how to prepared the drug, how to string all the lines together and how to set up the pump. First surprise of the day, the pump is a lot bigger and a lot heavier than I thought it would be . Setting everything up is complicated and time consuming and I'm wondering if I'm actually going to be able to manage it all. This afternoon all thoughts of watching the tennis were scuppered because I had to do it all again, without help but following a list of written instructions, while my nurse specialist watched. It appears that none of the nurses on the ward are trained to do this so I'm going to have to do it all myself. I managed without a blip so he was satisfied that as long as I followed the instructions I should be fine. The whole thing took me at least forty minutes but I'm told I will get more confidant as I get used to it. The worst bit for me was handling the needles. Although they are only used to extract the drug from the bottle handling them made me shake, which slowed me up. It seems a terrible effort but when weighed against 20 minutes out of my day six times a day on the Iloprost I suppose it isn't much really. I will get used to it, eventually.

I am starting the drug tomorrow as ICU did not have a free bed today. I don't know what they will do if a bed still isn't available, I'm sure they will think of something though, my nurse specialist said if it came to the crunch they will have to give it on the ward and he would sit with me until he was sure there were no ill effects.

A more happy circumstance was a visit from Peter and Laurence, they arrived just in time to see my run through and were amazed by how complicated it was. Andrew was banned as he has something which looks suspiciously like tonsilitis. He is off to the doc's tomorrow to get checked out. It will be awful if he has it, I remember getting it at his age and it felt like my thorat was full of glass. I feel bad that I cannot be there to give him a hug.

Saturday, 11 June 2011

Hammer Horror

Another huge storm over night so no one got much sleep, all walking around like zombies this morning and that includes the staff. Would have tried catching up this afternoon if the church across the road hadn't decided to have a fete. Children screaming and dodgy bango playing are not the best receipe for a quiet nap.

I was being a bit optomistic saying I hadn't bruised. Today I look and feel as though I've been kicked by a horse. I'm blue from my shoulder down to my boob. As for the wound on my neck, well Dracula isn't in it. I could make a good living as an extra for Hammer Horror movies.

 Today was a big day for me as I was packed off to clean my line site myself. I'm still not allowed to shower so I started off with a nice bath, taking care not to get the dressing wet. I then dressed and put my bra on and gritted my teeth ready to take the dressing off. The procedure is quite fiddly and involves lots of handwashing with alcohol before you even start on the actual cleaning. I followed what I'd been taught to do as closely as I could remember it. The wound itself is healing well but is still very painful. The worst part for me was getting the old dressing off, because my skin is so tender and sore. To add to my troubles the dressing seemed to have welded itself to the line, I am not allowed to use anything sharp around the line in case I accidentally nick it so it took me forever to get it off, especially as I couldn't really pull on it. The most difficult part is putting the dressing back on. It is one of those occassions when you need at least three hands. One to fold the gauze over the line, one to loop the line so it doesn't hang down and get caught on anything and one to apply the sticky waterproof dressing. It's all a bit of a juggling act but after a couple of near disasters I managed to get it all sorted. I'm going to have to figure out a different way of looping the line though as the way I've done it today means the cap is sticking out of my bra and looks like a third nipple. And I just can't go out looking like that, I'll be causing accidents.

Just when I thought the food couldn't get any worse, it did. Lunch today claimed to be 'french onion soup' = muddy puddle water, 'jacket potato with tuna mayo' = shrivelled brown blob with a dollop of grey stuff in the middle smelling faintly of drains, 'chocolate mousse' = cow gum. So I hot footed it across to the shop and stacked up on jaffa cakes and pringles. Tomorrow they are offering a 'traditional Sunday roast', my stomach is churning at the thought. I moaned about the food on facebook and so far have had offers of a full fry up and some banana bread. One can but dream.

My companions continue to thin out and another one is off later this afternoon. Unfortunately I am left with the sleep singer, the farter and to add to the mix a persistant vomiter arrived late last night. Ain't life grand! I dug out my headphones and plugged myself into a bit of Pavarotti. Worked a treat until the flaming storm turned up.

Spent a happy half an hour chatting to Andrew via facebook. He has man flu and is feeling a bit bunged but is boasting about doing some washing. When asked how my tomatoes were looking he said 'alive'. Not one to waste words my youngest. 

Friday, 10 June 2011

Thunder Bolt And Lightning

Slept like an absolute baby last night so my room buddies didn't disturb at all. Passed out at eleven thirty last night and woke up at eight this morning. I've been in some discomfort today, only natural but nothing a couple of paracetamol couldn't handle. Had a shallow bath after breakfast and immediately felt a lot better. That disinfectant stuff they wash you with stinks. They have decided that because of my tendancy of being allergic to absolutely everything that they are going to start the drug on Monday morning rather than risk problems over the weekend when the consultant isn't around. I'm a bit disappointed but understand where they are coming from and at least it means I have time to get used to the line and the cleaning routine before I have to learn about mixing and administering the drug. Talking of which I got my first good look at it today when they removed the dressing to give me my first cleaning lesson. It seems a bit complicated but the basic rule is keep everything as sterile as possible. It may be a bit fiddly and time consuming but if I get an infection it could be really dangerous so it is something I am going to have to get used to. Tomorrow, I get to do it all myself, with a nurse watching, and if all is ok I fly solo on Sunday. The site itself isn't bruised at all which is amazing but it is slightly swollen and tender to touch. I have more bruising on my neck and that site is painful but hopefully will ease off in a couple of days.

Having eaten barely nothing yesterday I was ravenous today, breakfast was egg, toast, jam and cereal. Unfortunately it was a case of eyes bigger than stomach so I saved the cereal in case I was hungry later on and thank goodness I did. I was really looking forward to lunch, cod in batter and chips, until it arrived. The chips were cold and soggy and came minus salt or vinegar and only about a thumb nail sized dollop of tomato sauce. The cod meanwhile was inedible mainly because I could not get at it. I have never encounter batter that hard, a pnuematic drill might have dented the surface but I couldn't and when I finally took one almighty stab at it, it shot off the plate and landed on the floor. So lunch for me was veggie soup, weetabix and a tangerine. Supper was marginally better but they would have to try really hard to mess up margarita pizza and to be honest by then a carpet tile would have looked good. This afternoon I was allowed down to the newsagent on the second floor, tomorrow I will get stocking up on biscuits as well as reading material, I have a feeling this is going to be a long weekend.

Had a little bit of excitement this morning when one of the staff nurses collapsed. No idea what was wrong but it must have been pretty serious as they called the crash team out. Thankfully they did their magic and she is now a patient on another ward. The rumour among the other patients is that she had a heart attack but unless I hear that from a member of staff I shall be keeping an open mind. More excitement followed when the biggest thunder storm erupted seemingly directly over the hospital. I love storms but it was obvious by the the little screams of my compainions that not everyone share my view point. And boy did it rain! The road outside looked like a river and the sky was as black as night. Love it!

Got rid of one room mate late last night and two others are going tomorrow. Unfotunately Ethel is still with us and is likely to be so until well into next week. It has been suggested that I use an MP3 to drown her, and the others, out. I will give it a go and see if it works.

Thursday, 9 June 2011

Mac The Knife

To say I had a restless night would be an understatement. My imagination caused me to burst out crying at one point. I swung from not wanting the procedure to wishing they would hurry up so I don't have to feel so ill.
My room mates struck up a frogs chorus around midnight when they burped, snored and farted their way into sleep. And this is something I've never come across before, sleep singing. One lady, who is a bit lively when awake to say the least, kept bursting into song startling everyone awake, but at least the other sound effects stopped for a while. I swear to God it was like bedding down with Ethel Merman. To top it all I was sick early this morning. Might have been nerves, might have been last night's cauliflower mornay, we will never know.

Was woken up to have a light breakfast at seven this morning, I really didn't feel like eating but forced a hard boiled egg and a cup of tea down, the only things I could face. I've been told to drink as much as I can up until midday as this will make my veins and arteries easier to find. I've also been told to take my duretics. Excellent, who wants to bet that halfway through the procedure I'll need the loo? A shower followed as I've been told to stick to shallow baths for the next few days so I don't get my dressings wet while everything heals and so the waiting begins. They say I will be taken over around 12.30 and returned around 5pm.

Had a phone call around ten from Laurence's god father inviting me to the christening of his daughter. it is the weekend after next. I might be out by then if all goes to plan but not sure if I'll be up to partying. I will have to see but I really hope so.

Ok here is your warning, if you don't like medical stuff stop reading now.

Well I won't lie and say it was painless because it wasn't but it wasn't that bad either. Every hospital is different in it's procedures but this is how they did mine. I was taken into a room very much like the rooms you go to have right heart catheters or ablations, if you have never had one of those imagine a cross between an operating theatre and an x-ray room. I was allowed to keep my pyjama bottoms on but was give a gown to cover my top which was tied askew to expose my right shoulder down as far as my boob. I lay on a trolley and they inserted a canula in my arm and cleaned my neck, shoulder and upper chest, twice. they then draped me with green sterile sheets. I was given what the surgeon described as 'a stiff gin or three'. I've never had a stiff gin but it was very nice and I felt quite relaxed but was fully concious and able to hear everything that was going on around me. By far the worst thing was the shot of local into my neck. I protested at that, but after that I felt no other pain but a lot of pulling and tugging. The procedure lasted about twenty five minutes and I had three stitches, two in my neck where the line was fed into the jugular and down into the heart, and another just above my boob where the line comes out to be fitted to the pump. I have two large pressure dressings, one on my neck and one over the exit site. They are both very sore but nothing paracetamol cannot cope with.

By six o'clock I was up downing cups of tea and managed to have some soup but couldn't eat the full meal. They have given me some biscuits in case I feel hungry later on. Very relieved it is all over and despite the noisy bunch I'm bunked with I think I'm going to sleep well tonight. The worst is over, hello recovery, the sooner the better.

Wednesday, 8 June 2011

Great Expectations

Well I am here, blood, ECG, blood pressure and oxygen sats taken. Now left ot my own devices until the consultant turns up.

I have received a reply from Halfords.

Dear Ms. Roberts

Thank you for your email. I apologise for the delay, I was awaiting comment from the store.

After discussions with the store, we have asked for them to remove the tents.

I am sure that you will no longer encounter any difficulties.

Please accept my apologies again.

Yours sincerely,

Sophie Brettell
Correspondence Team Supervisor.

You will note that she only apologises for the delay in replying, not for the incident itself. Not sure if I am satisfied with that, I will have to think about it.

The journey down was very quick and stress free for once. I gave both kitties a hug checked my bag again and I was away. Unusually they had a bed ready for me so I was settled very quickly. There was a comedy moment when the vampire turned up to take my blood, was told by the doctor to take my blood, looked at his machine, stated I was not on his list and left. Doctor returned said when we have the results.......I said 'oh he didn't take them.' 'Damn!' say the doctor then hares off to try and catch the vampire before he leaves the ward.

Bloods taken I settled down to wait for the consultant. He told me that I would be going to the Chelsea and Westminster for the actual line insertion and returned to the Brompton to start the drug. I will be put into intensive care when they start the drug as my history of allergy has got them all nervous. I will remain there for two days and then returned to a normal ward if nothing bad has happened. It all sounds very complicated to me but we will see. My nurse practitioner will be going with me to the C & W to keep me company so I won't be in a strange place on my own. The surgeon does work two days a week at the Brompton but would not be able to fit me in for weeks if I waited for a slot there hence the move. It is only for the afternoon so should be a bit of an adventure. My nurse practitioner has explained my fear of needles and they have decided to give me a bit of happy juice to sedate me so hopefully it will all be over before I know it.

The nurse gave me my injection tonight, she put it in my arm which was a lot more comfortable than in the stomach which I was told to do yesterday. If I ever have to do that again it will be the arm that gets it.

Looking forward to The Apprentice tonight. So glad I can now bring my laptop in, spent most of the afternoon watching Murray play at Queens. iplayer is going to be getting a bit of a bashing over the next few days as I'll be watching everything on it.

Lunch: cream of broccoli soup, hungerian goulash, stewed apple and custards
Supper: chicken and rice soup, cauliflour moray with broccoli spears, cheese and biscuits

Craving home made pasta already. 

Tuesday, 7 June 2011

But Still They Begin, Needles And Pins

Progress has been made in the small matter of Halfords and their disabled bays. I received two emails this morning. One from Halfords which turned out to be yet another automated reply saying they would get back to me within five working days. The other was from the owners of the retail park and I've copied it below.

Dear Hazel,
Thank you for bringing this to my attention. I will be speaking to Halfords as soon as possible to explain why their actions are obviously unacceptable. Please be assured of my best intentions to put this right.

This could be interesting.

Went to my GP to pick up my Clexane this morning. This drug is given by weight so I had to hop on the scales and got a big surprise. Last time I was weighed I was 53 kilos, today I weighed 46 kilos, even my doctor was surprised and gave me a quick lecture on the importance of eating properly. I was given a prescription for two ready filled syringes and a quick run through on how to inject myself and then sent off to a chemist to pick the syringes up. Arriving home I tentatively opened the box, took a quick look inside and hastily closed the box again. And there the box sat for most of the day. Every so often I went and picked up the box, rattled it then replaced it. By four o'clock I was getting cross with myself so decided to give it a go. Andrew was home by then and offered to do it for me. The gleam in his eye was enough of an incentive to take one of the syringes out of the box and look at it more closely. It was in sealed sterile plastic packaging and looked enormous. I ripped the packaging off and pinched up a fold of skin in my stomach all ready to go then remembered I hadn't taken the cap off. Once the cap was off and I could see the needle I nearly passed out and felt very, very sick. I grabbed the fold of skin again and made a quick ineffective jab at it and yelled 'I can't do this' and pulled the needle out again. Andrew took the syringe off me to allow me to calm down and again offered to do it for me. To cut a long story short after a couple more aborted attempts I did manage to inject the drug. I am still shaking.

Packed, un packed and re packed my bag today. I found it hard to sit still for long. I spent the day sorting out last minute things like feeding the tomato plants and typing up receipes of favourite pastas in the hope the boys will give them a go. I now feel reasonably confident that they will survive the week without me.

Andrew took his last exam today and the cheerful him has returned, I suspect the fridge raiding fairy will soon follow. Now he's moaning about having to go back to school to start year thirteen on Monday. The school he is at gives 6th formers a month longer taster session of the A level courses to help the students decide whether they want to stay on and if they do which subject from their AS levels they are going to drop. They advantage of this system is that when they start year thirteen proper they are already a whole month ahead in their studies. I am trying to persuade him that this is a good thing but he is not convinced. He feels he's worked hard enough this year and deserves a long holiday.

Phoned my mother to tell her about the hospital appointment and it transpires that not only has my sister not visited her but she hasn't called her either. I will have to give my sister a call and find out what is going on, hope this isn't because her illness has taken a turn for the worse.

The blogs will continue during my stay in hospital thanks to their wifi system. Do be warned though that I will be describing the procedure and anything else that happens during my time there. My intention is to inform, not freak anyone out but if you are easily freaked and don't like medical stuff I'd read with caution.

Monday, 6 June 2011

One Way Or Another I'm Going To Get You.

Well I am amazed, I woke up this morning convinced that I wouldn't hear anything from the hospital until tomorrow (Tuesday) at the earliest so when the call came at midday I almost fell off my chair. I'm to go in on Wednesday morning because they want to repeat a few tests and I'm booked into theatre at two on Thursday afternoon to have my line put in. Brilliant! So, so pleased. It looks as though they moved with some haste once the OK came through. This time next week I could be feeling so much better, I can hardly contain my excitement. Hot footed it to Tesco's this afternoon to stock up on Tangtastics, shower gel and paper hankies. I then un packed and re packed my bag just to make sure I hadn't forgottne anything, I bet I will though, I always do.

There is a couple of slight downsides though. The drug has only been approved for three months. After that my case will be reviewed before further permission is granted. Now I don't know what that means exactly. I cannot see my drug being withdrawn after the three months, unless it isn't working of course, but never say never. This is something I am going to clear up with my consultant once I go in. I suspect it has got something to do with me going on the transplant list as that is the only reason I can think of. The second thing is a real biggy for me. I have to stop taking my Warfarin from tonight in preparation for the procedure BUT I have to have it replaced for two days by another drug called clexane which I AM GOING TO HAVE TO INJECT into my stomach. ARRRRGGGGHHHH! Just how is a needle phobic supposed to do that? I feel faint even thinking about it. I just hope I can reason myself into it or I'm going to have to let my budding paramedic do it.

Halfords claim that they will reply to my complaint within five working days turned out to be a bit of a porky. What a surprise! I am not giving up though and have the bit between my teeth on this one. I have tracked down the owner of the retail park and have sent an email to them with my original email to Halfords (including picture) attached. One way or another I'm going to get someone to take notice. Next step is the local council and if I have to our local radio consumer programme. I don't know what angers me most. The fact that they blocked off the disabled bays or that they haven't contacted me yet. Maybe they think if they ignore it I'll go away. BIG mistake.

Andrew returned all smiles from his Physics exam so I'm assuming all went well. One down, one to go, Psychology tomorrow. So glad I am here to see it through. Once tomorrow is over he is going all out to try and find a little part time job as he needs to get his driving licence as part of the entry conditions for the paramedic course. Of course, if he is unlucky, I will pay for his lessons but I think it is rather nice that he wants to do it himself.

Finally I was delighted to look out on the back lawn last night to see a hedgehog snuffling around looking for worms and slugs. I didn't know we had a hedgehog in the garden and I am thrilled. He/she was quite a large hedgehog and had a good turn of speed. I'm hoping that it is female and will be have a few babies accompanying her one night. 

Sunday, 5 June 2011

Stormy Weather

In the last blog I told you how I'd seen Nigel Havers at the Brompton. In the newspaper today there was a small article about how he was at his wife's bedside when she passed away yesterday (Saturday) morning. How sad, poor man. I am so glad I didn't go and bother him about an autograph.

Slept all night and on and off for most of the day. I think the waiting had more of an effect on me than I thought and now I know things are on the move I've begun to relax again. Dropped off on the settee this afternoon and woke up feeling as though I had a brick on my chest, it wasn't it was just Tarmac who had draped himself across me like an over sized shawl.

We have been walking around as though treading on egg shells the last few days. Andrew has his final two AS level exams this week, Physics on Monday and Psychology on Tuesday. He's had his head in a book for most of the half term holiday so I don't think he will have much to worry about. However he is snappy and grumpy and has gone off his food. When he took the first set in January he didn't really know what he wanted to do having finally rejected the idea of being a Nuclear Physicist because he doesn't want to spend his life shut up in an office or a lab. As a result he didn't really have any motivation, he did ok but not as well as he could. Having spent some time looking at universities and different courses he has decided to train to be a Paramedic. He has argued that it will be a varied job that he will really enjoy. The decision has given him new motivation and suddenly the exams have become very important and he has grades to aim for if he is to get into the university and course he really wants. Roll on Wednesday when I get my happy go lucky, cheerful little boy back.

Laurence on the other hand has been trying to enjoy a rare long weekend. By chance his days off have all fallen at once and he is determined to enjoy them. However his work place have called him on each day to ask if he would go in for a few hours. What gets me is that they forced him to leave early on Thursday because he had built up too much overtime and now they are trying to get him to do more. Crazy. Anyway his mates have returned from college this weekend so he is spending this evening in the pub catching up, hopefully his work will leave him alone.

The weather has thrown a few curved balls today. Lovely and sunny until about three o'clock and then it suddenly got really dark. We had one clap of thunder about ten minutes of heavy rain and then it lightened up again. Half an hour later we went through it all again. At least the boys got out of having to water my plants for me as neither are in a very cooperative mood and I don't think asking would have been met with good grace.

Finally just a quick word about Britain's Got Talent. What a farce. Once the fixing scandal had broken it was perfectly obvious that it would be fixed for Ronan not to win in order to prove that it wasn't a fix. What made me laugh was the fact that Jai, the winner, took part in the last X Factor and got as far as boot camp before being kicked off.  Not exactly a stranger to Simon Cowell either then. I feel sorry for the poor manipulated genuine contestants, the ones that stand for hours in the rain, but I suppose it you really, really want something you'll be prepared to put up with anything to get it. If it really was an open vote the public should have sent Cowell a firm message but voting for Steven Hall and his weird dad dancing or Jean the over excited pianist. The jury is still out on what actually happened and no doubt the fall out will rumble on for some weeks to come.

So will I be watching next year? You betcha. 

Saturday, 4 June 2011

Sleepless In Seattle

With all the excitement of getting my funding yesterday I forgot to mention the other exciting thing that happened. Sitting in the cafe at the Brompton having a tea, as for once I'd arrive early, who should walk past us on his way to the toilets but Nigel Havers. I did a double take, he was wearing a gorgeous blue shirt but that didn't distract from how thin he was. I'm guessing he was there to support the Brompton's campaign to save it's childrens services. Maybe I'm going to see a whole string of famous people trooping through over the next few weeks, might make my stay more interesting.

To say I had a disturbed night would be an understatement. I expected to sleep like the dead, I always do after a busy day but no, come three o'clock I was wide awake and terrified. I kept thinking of having the line put in and how I'm going to live with it all day, every day for the rest of my life or until transplant, whichever comes first. I went into a complete panic. Will I have to change my wardrobe, I have a lot of strappy stuff for the summer and for going out, not that I do that much anymore, will the pump show under my clothing? Will I have to wear a lot of baggy stuff to hid it? Where exactly will the line go, how big will it be, will I feel it, will the local hurt, what if the local doesn't take and I'm in agony? All those needles they are going to use; I worked myself up into a right little tizzy. And then I remembered my hypno session and started to reason with myself. How long have you waited, praying for this? Do you want to get better? This is the only way it is going to happen. I don't know how but I eventually managed to talk myself calm and drifted back off to sleep only to wake up at eight for my meds. Thank God for the hypno, and to think I'd dismissed it as hocus pocus and wasn't going to go. I don't think this is going to be the only night I'm going to have like this, I suspect I'm in for a bit of a rough ride over the next few days. No doubt the imagination is much worse than the reality but it is easy to be logical at eleven o'clock in the morning far more difficult at two.

Spent the day getting prepared to go in, I want to be ready at the drop of a hat in case there is a cancellation. I checked my bag, which has been packed for the last four weeks anyway. I then typed up instructions for the washing machine so the boys have no excuse not to use it and taught Laurence how to iron his work shirts. They are all epilets and pockets so are more difficult than normal shirts. At least I will now be confident of not coming home to a pile of washing.

The lack of sleep caught up with by mid afternoon so I had a little snooze on the settee and woke up with two pairs of green eyes stairing at me. Funny how two animals that sleep for most of the day can take umbrage at someone else doing it. A quick check showed an empty biscuit bowl so it looks like they thought I was shirking my duties as a pet owner by not ensuring food being available 24/7.

News is getting around to my family and friends and everyone seems just as relieved and excited as I am. I am overwhelmed by the messages of good will, I didn't realise so many people cared. Thank you all. 

Friday, 3 June 2011

Ray Of Light

This post was going to describe how I saw my consultant this afternoon and how he told me that after several phone calls to the PCT they had promised to let him know about funding by the end of play on Monday 6th June. I wasn't happy but at least I'd only have the weekend to wait and the end was in sight. However just as I'd started to write everything down an email came through to say that funding has been approved. The hospital is now trying to find an early slot in theatre, hopefully next week so the waiting does go on but at least there is now light at the end of, what has been, a very long tunnel.

I have to say that I usually enjoy the trip into London to visit the Brompton but today was a nightmare. For a start we took the wrong car, we took Peter's which does not have air conditioning instead of mine which does. Big mistake, it was boiling and we had to have the windows open to keep cool and in the stop go traffic the heat and exhaust fumes were terrible. Add to that drivers doing some very silly things because the heat was making them lose concentration and you get an extremely stressful journey.

My hypnotherapist was very pleased with the progress I reported and we were both eager to build on the success. We talked a lot about how things that happen in the past can have a big influence on how you approach things in the present even if you don't remember the event. She told me that one of the ways to control this is to use logical thinking, so we did what she called a zig zag argument. On the left side of a piece of paper I had to write down what I was afraid of. On the right side arguments to counter the fear. In effect you are arguing with yourself, trying to get yourself to realise how irrational you are being. Once I'd written my argument down we did the relaxtion bit and I was able to remember a bit more about my illness when I was little. She says that the trick to sorting this fear out is to put myself in the place of the little girl I was and then view the event as the adult I am now and give the little girl me advice and reassurance. Sounds weird but I really hope it works as I will be putting it to the test very soon. At the end of the session she gave me a book to read called 'think your way to happiness.' I'm to pay attention to the chapter on anxiety and fear.

As we were leaving we ran into my consultant and my nurse specialist, they apologised and told me how many times they had rung the PCT. My consultant said he'd have hoped to have got me all done and dusted by now and he seemed just as frustraited about the situation as I am. Thankfully we both had cause to celebrated later on.

So as I finish writing this blog I feel a whirl of emotions. I'm really pleased that I can have the drugs I need. I'm frustrated because I still have to wait, this time for a theatre slot. I'm worried that the drug might not suit me after all this and I'm anxious about the seven to ten days I'm going to have to spend in hospital. The last will be the most difficult. Being so far from home I don't get any visitors and that makes things more difficult to cope with because I have no one to share the days events with or discusss something that is worrying me. Peter will visit when he can but it is too far to expect him to come up more than once or twice during a stay of that length. In the end though it will be worth it because I will get my life back.

 The book is doing quite well though I seem to be more popular in American than over here.

Still waiting for.....
News from the Brompton about a theatre slot
News from Harefield about transplant
News from the DWP regarding my DLA claim
News from Halfords regarding my complaint.

Thursday, 2 June 2011

I Saw A Mouse, Where? There By The Stair.

I found a gift today. It was small, gray, very smelly and dead at least three days. Ah the joys of having cats around the house. Usually gifts are fresher and left on the half landing of the stairs so they are easy to spot. Sometimes they are found when stepped on whilst getting a drink in the middle of the night. The whole house tends to know when I get one of those gifts. Today's offering had obviously escaped and eventually died whilst hiding under the settee. I have two cats. Smirnoff is a born mouser and I only get gifts when he really wants to please me, mostly I just find bits after he has finished his snack. Tarmac (yes I know it is a VERY silly name) on the other hand likes to give me things that are still alive. He is hopeless. Once he brought a mouse in during film night and just dropped it in front of us. During the ensuing scramble the mouse escaped behind a bookcase. Unable to get to it, the bookcase is screwed to the wall, we decided to finish the film safe in the knowledge that with two cats in the room it would not last long. After a half hour vigil, Smirnoff got bored so went out. Ten minutes after he left the mouse appeared on the stairs and started to wash itself. Tarmac, who was on my lap suddenly stiffened and crouched down ready to spring. He jumped at the stairs, missed the mouse completely which shot between his rear legs and back behind the bookcase. The mouse turned up dead two days later under the coffee table.

Lovely sunny day so we went for a drive. I haven't driven for getting on for six weeks now so Peter suggested I take the wheel for a short while. I wondered if I was well enough but everything went off without a hitch and I really enjoyed the feeling of being in control again. Maybe that is what I am missing, the feeling of being in control of my life. We went to MK and came back with a bag of the loveliest apples I've tasted in a long while. All the excitement knocked me out though and all I wanted to do was sleep, Peter had taken over the driving by this time so I was able to nap all the way home. At least now I know I can do it so maybe next week I can get as far as the river in Bedford and see if I can get some lovely snaps of the cygnets.

Talking of birds I watched a family of Starlings on the front lawn this morning, there were two adults and five fluffy chicks all lined up for what I presume were flying lessons. I went to get my camera but just as I was preparing to take a shot some bloke walked past with his dog and spooked them. I will be keeping an eye out for them over the next few days in the hope I get another opportunity.

Got another session with my hypnotherapist tomorrow. After the success I've already had regarding my needle phobia I'm quite looking forward to it for once. I'm not all that keen on the 'tell me how you are feeling' bit. I am still finding it very hard to open up to her but the relaxation and the improvement in my fear of needles means that something, somehow is working. I haven't been as rigid in my practising as I should, to be honest with all the anxiety of waiting to hear from the PCT I've found it difficult to relax in the normal sense let alone drift off to Hawaii. I have tried but my head is elsewhere and my heart just not in it, not this week.

Still waiting for.....
News from the Brompton about my Hickman line
News from Harefield about transplant
News from the DWP regarding my DLA claim
News from Halfords regarding my complaint.

Wednesday, 1 June 2011

What You Waiting For?

Three weeks have passed since I was in hospital being told I have to have a Hickman line put in. In theory then I should be hearing from them anytime now as the consultant said he expected to get me back within three to four weeks. All this waiting for a letter or the phone to ring has made me think and I've totted up all the things I'm hanging around for, it is quite a list.

News from the Brompton about my Hickman line
News from Harefield about transplant
News from the DWP regarding my DLA claim
News from Halfords regarding my complaint.
News of whether I have got any Olympic tickets.

Well my wait for Olympic tickets is over as I have just checked my bank account and found that no money has been taken. Bummer! Ah well I'll probably get a better view from home anyway. Watched the news in growing disbelief at lunch time as they interviewed this upper class banker type who had applied for £36,000 worth of tickets but ONLY secured £11,000 worth. He then went on to imply that anyone who had not got a ticket must be stupid not to think of his brilliant idea on how to in effect cheat the system. 'Well it was quite obvious to me that like most lotteries you gamble more than you can afford.' IDIOT! I for one could not afford to gamble hundreds of pounds so only applied for what I was vaguely interested in, I suspect the majority did exactly the same.

I was even more infuriated to find out that we are the only country allocating tickets in this way. In Germany for instance you can choose your event, the day you want to go AND pick your seat, pay once you've made your choice and a confirmation is sent to you within a couple of days. Why the hell couldn't we do it that way? I mean when you come to think of it, what sort of system expects you to pledge hundreds of pounds (in most cases) and not even know what you are getting until a month later. If the ticketing is any indication of the organizational skills of those in charge the event itself is likely to be a complete debacle. As my sons said when I broke the news, at least I won't be around when something goes horribly wrong, I can watch it all from the safety and comfort of home. Amen to that.

I sent an e-mail to my PH team to ask if any progress had been made and the answer doesn't really tell me much.

'Our Pulmonary Hypertension coordinator has requested that your case be heard as urgent, and we hope to hear this week. I will keep you up to date.'

They hope to hear 'this week', I wonder if the PCT have any idea what 'urgent' means. Isn't it strange, two months ago I dreaded having to have a Hickman line, now I cannot wait. Funny old business sometimes this PH.

I have finally succumbed to Jeremy Kyle. I went to take my meds this morning and flicked on the TV to watch Sky news while taking it, as it my habit. I'd forgotten that I was glued to Britain's Got Talent the previous evening and just hit TV instead of punching in the channel. There was an argument going on, isn't there always with Jeremy Kyle, about, actually I never did work out what it was about, and I just couldn't help myself. I was glued. Hopefully this is just a passing blip, my family put up with me watching a lot of naff stuff but I think Kyle would be a show to far, even for them.

Smirnoff, I am pleased to report, appears to have forgiven me for his burnt whiskers and insisted on cuddles this afternoon which for him meant leaping onto my desk and sitting on my keyboard. He does look funny, all lopsided but he smells lovely, a mixture of match smoke and lavender. As a sorry I got my sewing machine out and made him a brand new catnip bag to play with, which he promptly ignored, stalking off as though he was above such obvious bribery. Fickle isn't in it.

Andrew came home from karate last night with a swollen nose, he had landed face down during one of the fights. Thankfully I don't think it is broken and he can still breath through it. Once again he has refused to get it checked out so I can only hope everything is OK. I must admit I expected two black eyes this morning but the only signed of anything amiss is a slightly swollen nostril. He must be blessed is all I can say because if it were me I'd be head to foot in plaster by now.

Laurence announced today that he has a four day weekend this week, lovely, it will be nice, and unusual, for us to have so much time to spend together. Sods law will be call from the hospital tomorrow morning telling me to go straight in.