Staggered!

Well in my last post I said I was feeling better. While that still holds true overall there have been a few blips since then.

The biggest 'blip' is way out of my control but seems to be having the most effect. The air quality is terrible. Being only thirty miles outside of London we are in the 'high' area and the effects are obvious. There is dust everywhere, all over the cars, windows, grass etc, etc. I have followed advice and stayed in but my breathing is still all over the place. Unfortunately houses are not air tight and every time someone comes to the door or Peter goes in or out then air gets in. I'm on constant oxygen and not very happy about it.

The second problem is self inflicted. I slipped one some water in the kitchen and wrenched my shoulder grabbing the counter top to stop my self going over. I now have pain in my shoulder, neck and back to contend with. My own fault, should have stayed out of the kitchen but I felt bad calling Peter in just to make me a cuppa. I will know better next time.

This afternoon I'm having to venture out as I have an opticians appointment I can't cancel. It took me ages to get the appointment, I've been waiting since January, so I'm not going to miss it, especially as I'm running out of contact lenses. Hopefully the promised 'moving away' will have started and the dust cloud will be bothering someone else.

After having a rant about the DLA claim system in my last post I was surprised to get a letter from them yesterday.

Well actually I wasn't that surprised. I just thought they'd rejected me rather quicker than usual. Either that or they wanted me to have an appointment or provide yet another piece of paper saying exactly the same things as all the other pieces of paper I'd already supplied. I nearly fainted when I read the contents. I was so convinced I wasn't reading things correctly I got Peter to read it to me twice. They were granting my claim! It appears that being on the transplant list and being attached to permanent IV lines is something they can't argue with. The whole process took less than a month and I am genuinely gob smacked. I have never had a claim turned around to quickly, not even a rejection. It did come with dire warnings to let them know when I'd had my transplant though, but that is just sense really. Although in the information booklet it says you can still claim at your old rate for up to a year post transplant while recovering. After that you need to claim again and they will either dismiss or adjust your claim depending on how you are doing. That is good news and surprisingly sensible. After all the whole point of transplant it to be able to have a full active life again and not be disabled.

In the news there are two stories that provoked an interest lately.

Firstly the change in grading the GCSE's, again! I have to say as a former teacher I'm really glad to be out of it at the moment. The idea is that by changing A* - G into 1 - 9 it is going to improve things. No it won't. The reason China, Korea, Japan, to name but three, are ahead of our children in all things educational is purely down to discipline. I'm not just talking about the fact that in these countries disrupting class is seen as a disgrace with punishment welcomed and repeated by the parents, though that is a large chunk of it. I'm talking about the discipline that comes from kids wanting to learn something. Unfortunately the overfull and exam driven curriculum has made education nothing more than a tick box exercise which is frankly boring to both teacher and pupils alike. And I know I'm being terribly un-PC here but it would help if kids were graded according to ability again too. Like it or not, not all kids are the same and some struggle while other fly. By putting every body in one pot all that's happened is those high flyers now have clipped wings.

The second story was the proposal to let alcoholics have liver transplants.

Now call me petty but if your condition is self inflicted then why should you take an organ away from someone who has done nothing wrong? I know that there will be all sorts of hurdles to jump including giving up the drink and promising to stay sober. The problem I have is that we have been here before and once an addict, always an addict.

George Best was probably the poster boy of why alcoholics shouldn't be given transplants. He did absolutely everything right. He stopped drinking for the required period before his transplant and remained sober for sometime afterwards but there were warning signs. Firstly his sobriety wasn't down to will power alone. George couldn't trust himself not to drink and relied on stomach implants that made him sick if anything alcoholic passed his lips. Wouldn't you think feeling ill from liver failure would be enough? George had his new liver and was a good boy until he started to feel really well and then he was back on the booze as though nothing had happened. What a waste of an organ and an insult to his donor.

Now of course George Best was a one off in many ways but his story does illustrate the flaws in this new plan. Yes, I suspect that many alcoholics will remain sober for the rest of their lives out of gratitude to the donor and medical team, or out of fear of being in that position again. However there will still be the Georges of this world who will do and say what they need and then fall straight off the wagon the moment they feel they can. Unfortunately there will be no way of knowing how things will turn out until way after the operation.

I am not on the liver transplant list so have no idea how those on it are taking this news. However if they said that smokers could have lung transplants and then compete with me for much needed organs I'd be right royally p***** off.

Michael Schumacher is still in a coma and there are different reports circulating. Some are saying there are 'positive signs of progress' while others are saying he is 'unlikely to make and further recovery'. All we know for certain is he is still in hospital and still on life support. Things are not looking any better. So sad but as they say where there is life there is still hope.

Cry Havoc, and Let Loose the Dogs of War

Just thought it was time to give you a progress report.

So how am I doing, well a lot better than I was. I'm feeling more like me and some of my old fire is returning so that's a good sign, even if Peter does have to put up with the odd rant now and then. If only I could sort the breathing out I'd be fine. At the moment it feels as though someone has put a plastic bag over my head. Of course I now find out that this might not be entirely due to whatever is ailing me. It seems that the air quality in my part of the world is very, very poor today and has been for a few days now. That could explain a lot and I've increased my oxygen usage from 'only when moving' to 'all the flaming time' just in case.

As for my appetite, well it is returning in fits and starts but at least it is returning. I was taken out to choose some sweets and general rubbish to eat in an effort to find something to tempt my taste buds. I came back with tins of ginger beer, a packet of ginger biscuits, two boxes of Complan and a bag each of Tangtastics and Moaoms. The only mistake was the ginger beer, which on closer examination turned out to be diet and therefore calorie free. Still it did the trick and kick started my eating again. Part of the problem is convincing myself I'm not going to be sick the moment something enters my mouth and sucking on the sweets certainly helps with that, every time.

There are people out there who don't understand why I've become so ill, so quickly. Well it hasn't really been that quick has it. The first warning sign came way back in January/February when I passed out at home. I put it down to the start of a chest infection but then it happened very publicly at work and scared my poor colleagues to death. This time the heat was blamed, and to be fair didn't help but was probably not the entire cause. And then a third turn and I knew I was in trouble. You all know the rest. However most people would have bounced back and been back at work this week so why not me? Well PH is a balancing act. It is a constant battle to keep everything on an even keel and if one thing goes out of balance then it is like dominos, everything goes. The big problem for me was sickness so severe I couldn't take my oral medications. It only took two - three days for damage to be done but it is going to take two or three weeks, maybe longer, to get everything working together again in perfect harmony. I'd like to think of myself as a Formula one car but in reality I'm more like the clapped out tractor some skinflint farmer is trying to keep running.

I was shuffled off to hospital this morning for repeat blood tests in the hope that my return to meds and eating is having some positive effect. This is fairly urgent stuff as if I'm not improving then I might need supplements to boost things. In the Brompton I got the results of my bloods in a couple of hours. In my local hospital I'll get the results in about a week. Not being funny but I could be dead by then. There was no use protesting to a nurse who casually asked whether I really needed my oxygen so I've email the Brompton instead. Maybe they can kick bottom.

As regular readers know I am going through the process of renewing my DLA (Disability Living Allowance) claim, which runs out at the end of July. So far I've had to jump through several hoops including sending proof of the medications I take, letters from my consultants and a list of equipment I use in my day to day life. Despite all this I might still be required to attend an interview, have someone visit my home or provide yet more proof. This has not come as any surprise because I've renewed twice in the last seven years, they won't give me a whole life award for some reason, and each renewal has ended up in appeal, and in one case tribunal.

So imagine my disgust and anger at a story I read in my paper today. Rant Alert!

A woman claimed she was so Agoraphobic that she was a 'prisoner' in her home for the last fours years. Over that period she accrued £50,000 in disability benefits. She claimed she never left her bedroom and relied on a friend to do all her shopping etc. Now I have nothing against anyone who suffers from a phobia so severe it ruins you life like this. However what this woman failed to mention was that she worked as a travel writer and spent a great deal of her time abroad researching. Does that sound at all agoraphobic to you? No me neither. She was only found out when government officers decided to finally pay her a visit to assess her claims and was told by a neighbour that she was away on a month's visit to India.

Several points come to mind while reading this story and although I am angry at the woman, whom I hope gets a lengthy prison sentence, I am also angry at the system that let this happen. It seems to me that if you want to claim every benefit going then very little is done to stop you. However, if like me you want to retain some independence by working and only claiming enough to make that desire possible, you immediately come under suspicion of fraud.

I, and many in my position, have worked all our lives, paid taxes and asked for nothing. Then when we fall ill we resist claiming anything because we either don't feel we are ill enough or that we just want to struggle on by ourselves as long as we can. When we eventually give in and claim the process is long, fraught with difficulty and quite frequently those most deserving get denied just because they refuse to bow down to their condition and play the martyr. Sometimes in order to get anything at all we are forced to exaggerate. For a long time now those with PH, and I'm sure other conditions, have been told to fill in the form as though it was your worst day. In other words the system is so flawed it forces honest people to lie in order to get the help they need. And yet some people, like this globe trotter, just seem to be able to fill out a form, open their arms and watch the money flow towards them like a tidal wave. The new system, brought in a couple of years ago, has just made the situation so much harder for the honest ill.

There was some rejoicing then the firm brought in to carry out the dreaded assessment pulled out of their contract early because they were getting too much abuse. Forget the fact that they were so incompetent at their job that two thirds of their decisions were turned over by appeal courts. However now that they have gone we are back, I'm sure temporarily, to being assessed by those without any medical knowledge at all.

The only way the system is ever going to work is if claimants are assessed by clinicians who have some expertise in the condition being claimed for. So if you have Cystic Fibrosis your case should be assessed by someone with a working knowledge of CF. The same for suffers of MS, Parkinson's etc. Those with particularly rare illnesses such as PH should have their assessment done by experts. Not only could the presence and severity of the illness be judged without question by someone the claimant has confidence in but anyone trying to fake it would soon be spotted and removed from the process.

Of course all that is going to happen in the interim is more havoc while disgruntled claimants beat their way to tribunals and appeal courts. As for me, well I'm fully expecting to have to take up arms again and prepare to do battle with a faceless oik. After all I can't be disabled as I've only got high blood pressure. Right?

Early Mother's Day Treat.

I had my Mother's Day yesterday and lovely it was too.

My eldest Laurence aged around three

The plan was to either take me out to a posh restaurant or cook at home for me. As my health started to deteriorate the restaurant idea was quickly shelved. Then the cooking for me plan when out the window too, so what did they come up with? Well I was bungled into the car and driven to Laurence's where a Chinese take away awaited me. Now I know some of you are going 'what were they thinking' but it turned out to be the best meal I've had for a long time. There was no off putting huge plateful, and I didn't feel pressure to eat everything put in front of me. I could pick and choose and I probably ended up eating more solid food over the space of two hours than I'd eaten the whole previous week. I even downed a couple of glasses of full sugar Cola. I know I shouldn't be having the caffeine but I'm so weak at the moment I needed something to give myself a boost.

Unfortunately the day was over all too quickly. I was very tired and I think Peter was anxious I rest to enable the food to do it's work. Back home I had a glass of Complan and then dozed until around six. It was lovely to wake up feeling full. I had more tea and more Complan and even tackled an apple before heading to bed at around eleven.

Andrew around six months

This morning I woke to tea and toast and then got up to watch the Grand Prix before a lunch of steak and chips. This wasn't quite as successful as the Chinese as I felt under pressure to eat everything. Picking is definitely the way to go as far as my appetite is concerned. I am trying and I'm really annoyed with myself for letting things slide this far back. I was doing so well. The sickness tablets were keeping everything under control and I was managing to eat a lot as the constant feeling of nausea had gone. Now it's back and it is going to be very difficult to get everything back under control in time for my next visit to Papworth in two weeks time.

Those on Flolan will know that the dosage is partially controlled by weight. This means if you loose weight the drug becomes more concentrated in the body and if you put on weight then it becomes less effective. That's part of the reason the PH centers are so paranoid about your weight. They need to be sure you are getting the right dose for your body mass. By losing half a stone, actually a bit more than that now, I'm caught in a Catch 22. I'm getting a bigger concentration than my body can take which is making me feel sick. The only way I can get rid of this feeling is to put on weigh because the Brompton will not lower the dose any further. However how can I put on weight if I'm feeling too sick to eat? See the problem?

Brothers

I know I can do it, having done it at least once before, but in two weeks! I don't think so and it's stressing me out. I've tried explaining to the transplant team that I'm doing my best but they don't seem to hear me and just tell me off for not making the effort. They have had the grace to admit that they don't usually have to encourage patients to put on weight, it's usually the other way around, so maybe they think putting on weight is as 'easy' as taking it off. I'd argue it is harder. Peter worked out that in order to put on all the weight I have lost plus the little bit extra Papworth were hoping for, I'd have to eat six Mars bars a day for the next two weeks. That's just not going to happen. All I can do is eat what and when I can and hope for the best.

Weight aside I do feel a bit stronger today and a bit better in myself. My mood is certainly on the up.

Tomorrow I'm off to the GP to collect my sick note for the next week. I'm sad I'm having to take another week off work but grateful that I didn't end up in hospital. On Tuesday I've got to visit the Lethal and Deadly for repeat bloods just to keep a check on things. After that it's a 'wait and see' situation.

As you know we've been having a clear out and Peter came across my oil paints. I have no idea what state they are in but if they are good I might try a little bit of abstract art to keep my brain ticking over. If the weather is nice I might sit on the back step and watch Peter do some basic tidying up around the garden for me. I'm desperate for anything that isn't daytime TV.

Just a gentle reminder to sign the organ donor register

It is Andrew's last teaching week in uni this week, that time went quickly. He now has a month off with Easter break and study leave and then he is back in for his finals. June and July he will be on placements and he qualifies at the end of August. The start date for London Ambulance Service is November so he will be able to take a couple of very well earned months off before launching into the world of work. We won't know about the East of England start dates until he's got through the next set of interviews which for him is on the 10th April. I have to say it has been a roller coaster few years but once he is in work and happy it will be worth it all.

The pictures in today's blog are of the little men who made me a mum and now are both big enough to carry me around.

A Foggy Day in London Town

Well the trip to the Brompton produced the usual mixture of good and bad news. Unfortunately this time I got more bad than good.

The day started badly when I woke up with a thumping headache and feeling pretty rough. I'd had a rough night breathing wise and was tired and crotchety. The weather definitely did not help as I pulled back the curtains to be greeted by a thick bank of fog. Brilliant! Travelling into London is difficult at the best of times, fog was not going to make it any better.

After a quick breakfast of tea, tablets and half a slice of toast we set off early expecting a lot of problems. As is always the way when expecting the worst, we sailed in and found a disabled parking space right outside the hospital doors. We were thirty minutes early. So I was sent off for an ECG, Bloods and ECHO, weighed, had my blood pressure and SATS taken and then plonked in the waiting room to, well, wait.

The first thing the doctor said was 'what have you been doing to yourself?' He then went on to say how pale I was and why wasn't the smiling bouncy Hazel he always expected in front of him. I explained everything that had been going on these last few weeks. The faints at home and at work, the feeling 'not quite right' the sickness and the head cold. He did all the usual listening to my chest, taking my pulse etc, etc and then delivered his verdict.

My chest is clear of infection and my heart is in sinus, but my blood chemistry is all over the place. I'm low on Potassium, Magnesium, Iron, etc, etc. My Oxygen SATs are lower than expected, my blood pressure is slightly up, my pulse is too high, and the ECHO showed a few changes for the worst too. Clearly all is not well. Now it could be that a lot of it can be accounted for with my recent bout of illness. Certainly the blood chemistry would have been affected. Other things he's not so sure about and these need further investigation.

So he has ordered me to stay at home for at least another week and get over things properly. If I'm feeling OK after a week I can do normal things again. However if I don't feel right I am to stay at home and rest. Naturally I'm to let him know immediately should things worsen. In the meantime he will arrange for me to go in for a few days for further tests A repeat ECHO, a CT and if needed an MRI. Joy!

However the good news is that I've finally been granted the Viveltri (spelling) and so while I am in they will start me on that too and if necessary increase my dosage slightly. After all, as the doc pointed out, I have been on the same low dose for almost three years, which is much longer than they'd predicted.

So it is back on the sofa and Complan and I'll have to call work and tell them I'm on Doctor's orders to stay put. At least I got a day out and wasn't shuffled straight onto the ward. Time to get the paints out again I think. Oh happy days!

Better!

I woke up this morning feeling normal at last. There was no lurch of the stomach. No fear of taking a sip of tea and no need to perform the three second mile (or equivalent) into the bathroom. Internal peace has been restored.

Yesterday I trod very carefully and sipped on every flavour of Complan there is, except chicken,  I cannot get my head around a savoury milkshake. With each glass my stomach's reaction lessened until at six I felt confident enough to take my evening meds. I spaced them out over an hour with copious amounts of Complan in between and they all stayed put. This morning I had yet more toast and some tea and took my morning meds in the same way and yes they have all stayed put too.

Now that I'm feeling more myself the two days with nothing but Flolan doesn't seem to have had too much of an ill effect. That will be confirmed or not when I attend the Brompton tomorrow. I'm a little bit more breathless, I have no doubt that my warfarin levels are non existent and my ankles are huge, though the diuretics I took this morning are beginning to help with that. Of course I have no way of knowing what is actually going on inside but I drank enough Complan yesterday to get 100% of my RDA of Iron, Pottasium and Magnesium and those are the ones people with PH really have to watch out for.

Today I feel up to normal food, in fact I have a real craving for chips, which of course would be a big mistake this early on. So I'm going to settle for something a lot less greasy. I haven't quite decided what yet but a small portion of pasta with a simple tomato sauce sounds promising. I certainly cannot face meat or anything heavy at the moment. And I don't want anything milky either, I'm getting enough milk with the Complan. At least my bones will be in good shape with all the Calcium I'm consuming.

All that's left to do is say thank you to everyone who has wished me well and helped keep my mood up over the last few days. This illness would be so much harder to cope with without you all.

I will let you know how I get on at the hospital tomorrow.
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Sick!

Just when I thought things couldn't possibly get any worse fate/God/whoever decided to prove me wrong.

Before I start this is not another pity party post, well maybe a little, but a lesson in how quickly things can change when you have PH.

As you know I didn't go into work on Monday as I was so tired I could hardly stand. Now I'd put this down to being distressed and catching Peter's cold. The real reason made itself clear later that day.

I didn't feel like lunch but took a few mouthfuls and then moved everything around my plate for twenty minutes before giving up completely. Peter went out and got me some chocolate which I sucked on intermittently throughout the afternoon. Tea time and again I didn't want anything but this time put it down to having the chocolate. Peter reasoned that my lack of appetite was probably down to being so tired. So it was decided I'd stay up to watch Eastenders and then go to bed early with a warm milky drink.

Then it started.

The first sign of trouble was what I took to be chronic indigestion then overwhelming nausea. I made it to the bathroom in seconds, Peter says he hadn't seen me move that fast in years, and there I stayed until the early hours when I fell into bed exhausted. Tuesday morning I woke and tentatively sipped on the tea Peter had left for me. Big, big mistake! And another few hours in the bathroom ensued.

By now I knew I was in serious trouble. My Flolan was OK Peter changed that for me. But all my oral meds had fallen by the wayside. Once out of the bathroom I became more or less unconscious for the rest of the day only emerging around eight last night with raging thirst. I downed a glass of water probably quicker than was wise but amazingly it stayed down. An hour later another glass of water followed by a weak tea, no milk. Then back to bed and a long deep sleep.

This morning I nibbled on a piece of dried toast and have, so far, downed three cups of tea with milk and a good helping of sugar. I'm still feeling a little queasy after each one but they are staying down.

One thing I have to comment on was the devotions shown by Smirnoff. He was greatly perplexed by the fact I didn't get out of bed but when I did I spent a long time behind a locked door making odd noises. He nuzzled me, meowed at me, tried to dig me out from under the duvet and finally snuggled up tight along my back and purred loudly. In the past when I've been this ill it was Tarmac who provided the comfort. Now it seems Smirnoff is out to prove he is more than up for the task.

Both Papworth and the Brompton were called. Amazingly Papworth have kept me on the list stating that they cannot risk not trying to do the op if organs became available. The plan would be to test for any bacteria and if the surgeon was happy to go ahead anyway. Only if the infection levels were dangerously high would they abort. Brompton was more worried about the lack of medication and are arranging for me to go in to see them on Friday (when I will be less of an infection risk to other patients) to see what damage I've done. Hopefully the temporary stoppage will not cause any real problems but they need to check things like my potassium and magnesium levels as they are very important to PH sufferers. Papworth wanted to know how much weight I'd lost and the answer was an astonishing half a stone. I'm back down to seven stone eight pounds again but at least it's not at bad as the seven stone I started from. However it does mean I'm going to have to do some serious stuffing when my appetite returns. Papworth are seeing me in a couple of weeks and are expecting serious improvement in the weight situation.

Apart from my sore stomach I've had a few palpitations and my ankles are the size of baseballs and of course my breathing is terrible. When you take those handful of tablets every morning and every night you don't realise what effect they really have. I tend to think of them as nuisance value only and see the Flolan as the one I must not mess with. However the delicate balance has been disturbed and although it only took a few hours to become unbalanced it is going to take days, if not weeks, to restore the equilibrium again.

Any 'normal' person would brush off a tummy bug in a couple of days. You forget how delicate our situation is until something comes alone and reminds you. The problem is where the hell did it come from? Peter has been fine and at home we have eaten the same things. The only things we can put our fingers on is one of the apples out of the fruit bowl. I do wash my apples but maybe I missed something. Or a yogurt I had mid afternoon. It wasn't out of date and tasted and smelt fine but you can never tell. It might not be either of these of course, I might just as easily picked something up whilst out on Saturday. Who knows.

At the moment I've gone from only having one working pump to having four. Out of the blue two more were delivered Monday morning. I have a suspicion they were not meant for me but the delivery note did have my name on it. I have tried getting through to the company, well Peter has, I've been too unwell, but have given up. Maybe one day they will realise I have something I shouldn't. Until then I'm keeping quiet. After my last experience I think having a few back ups would be very wise.

So this afternoon I'm trying another slice of toast and if that stays down I'l take my evening meds as normal and hopefully things will start to improve. I have a feeling I'm going to be hitting the Complan over the next few days and then indulge in a few fry ups to get the weight back up. Right now though all I want is another little sleep and another cup of sweet tea. Some girls have all the luck. Sigh!

All You Need Is Love...and a good night's sleep

My body finally overruled my mind last night and sent me into a twelve hour, deep, deep sleep. I woke only once when my alarm went off. I hit it, mumbled to Peter to phone work for me and went off again. By the time I woke at around half nine I felt calmer and much better than I'd hoped.

Last night I not only felt shattered but ill. My breathing wasn't right, I'd been sick and was feeling light headed so, with everything else, I'd already more or less decided to skip work today. I'd set my alarm more out of habit than hope that I'd be up to dealing with all the additional strains and stresses work brings. And I think I've discovered why I've felt so 'off' this weekend. I have a cold. All weekend I've been plagued by a dull, persistent headache and put it down to lack of sleep and being upset but it seems there was also a physical reason brewing. I can't say I'm surprised, Peter has been coughing and sneezing all week.

I woke to news that six year old Weston Keeton had also lost his battle with PH. This horrible illness is no respecter of age and this poor little boy never had a chance of a normal life.

Despite bad news piling on bad news I feel more positive than I have done for some days. It is amazing what a good night's sleep can do. It is also amazing what love can do and I have never felt so loved as I have over the last few days. Family, friends and colleagues, along with people I don't even know, have been so supportive. They have contacted me in every way there is, I have over thirty emails to replied too this morning and numerous face book messages. Everyone has said they are praying and hoping my time comes soon, even fellow sufferers who are in worse situations than me. Some have written to say how much they regret their inability to donate because they have illnesses that stop them from doing so. And some have even copied their donor registration into their messages.  And the most amazing thing? Not one person has been mean or nasty. I usually get a few along the lines of 'stop whinging' but not this time. The response has been 100% positive.

I've read back over my posts of the last few days and I am sorry I've been on such a downer but if they have inspired just one more person to sign the donor list this weekend then all the horrible feelings have been worth it.

So, if I can just shake this streamer, I think I might just have started the bounce back up. PH is not an easy illness to live with. Being on the transplant waiting list is as difficult as it comes. Put the two together and sometimes it becomes too much and you have the inevitable melt down. This weekend it was my turn to hit rock bottom, next week it will be someone else who needs to be pulled from the mire. Hopefully I can be as supportive to this person as all of you have been to me.

Thank you for reading my non stop pity party this weekend and thank you for caring enough not to turn your back.