Dont Tell My Heart, My Achy Breaky Heart

They say things are sent to try us and believe me I am being severely tried at the moment.  Once I'd got over the euphoria of being told they know what is wrong and how to fix it the reality check set in and I woke up this morning realising that in less than a month form now I'm going to be permanently attached to a machine. What a big step to take. I also came up with a load of questions that my mangled brain had failed to compute while actually sitting in front of the consultant. I've sent them off to my nurse specialist who hopefully will get back to me soon. The first batch are listed below. I will add more as I think of them and let you know the answers in future blogs. For those who are used to the cosy, 'nothing nasty or involving blood', atmosphere of the PHA website do be aware that on this blog I intend to tell it as it is.

How long does the procedure take?
Is it done under local or general?
How difficult would it be to accidentally pull the line out in your sleep?
Will I be able to move my arm and shoulder freely without fear of dislodging it?
How many types of Prostaglandines are there and which one will I be given?

Have also been weighing up the pro's and con's from my point of view. The obvious con is the fact that I'll be attached to something. Others include the risk of infection at the line site, the complicated mixing of the drug and the switching of the syringe(though that will get easier with practice) and the increased hospital visits at least for the first few months. On the plus side there will be no more clock watching to take meds 9 times a day or lugging around a bag full of stuff every time I go out. I'll be less tired as sucking away on a nebuliser for 10 - 15 minutes each dose is exhausting. And I'll be getting a constant dose of the drug rather than a high and a gradual fading away as I get now, so I should feel better and have more energy.

It has been a month since I applied for my DLA and as yet silence. I've been back onto the website where it says my claim is 'in progress'.

To save me from myself Peter and Andrew took me to Costco this afternoon to pick up a few supplies. Peter was in charge of the trolley and Andrew took charge of the wheelchair. Thankfully it was very quiet so we were in and out in just over an hour. It did cheer me up to be doing something 'normal' even if it was in a chair. Tomorrow, if it is nice, Peter says he's going to take me for a push along the Ouse to see the new Cygnets.

Peter cooked dinner today. I think some cooking lessons are in order, I fancied a light delicate pasta, I got pasty and beans. Am I grateful? Of course I am but I don't want it every day.

Laurence went paint balling  with some work colleagues yesterday. It was a painful experience by all accounts but hugely enjoyable even if the marks left do make him look as though he has an alarming outbreak of ringworm.

24. Go rock climbing
25. Go paint balling

Under Pressure

Well the three days of enforced rest are over and it's an early start to get to the hospital by 09.15. Today is test day, first the CT, then the echo and of course the obligatory blood tests.

Yesterday I bit the bullet and went to see my GP to get signed off sick. He took one look at me and promptly wrote out a note for two weeks 'as a start'. Whatever happens I'm now off until 23rd May. I hadn't unpacked my bag from Friday as I was sure they were going to keep me in so it didn't take long to get everything ready and by early evening I was ready to go.

Traffic was not so good today and I made my appointment time for my CT scan by a whisker only to find it had been cancelled and moved to this afternoon. On the ward I had my first run in of the day when they tried to take all my medication off me. No way was that going to happen. I am not a moron or a child, if I can be trusted to take it out of hospital then I can be trusted to take it in hospital. They say it is their policy, well two fingers to their stupid policy. It was not their policy when I was last in. Saw the doctor who ran me through what they are considering for me. The Hickman line is still the fore runner.

Went down to have my echo first which went like clockwork though took rather longer than usual. Back on the ward I had barely time to get back on the bed before another porter arrived to wheel me down to have my CT. Everything was going well until I noticed that he'd sailed past the CT lab and was heading to an area I was unfamiliar with. I challenged this, reminding him that I was going to CT. He thrust a piece of paper in my face and said 'pacing'.
'Pacing? I've got no reason to go to pacing, I haven't got a pacemaker.'
'Pacing', the piece of paper was waved in my face once more.
'No CT'.
'Pacing'
'Oh for God's sake! I haven't GOT a pacemaker.'
I even pulled down my top to show him but he was adamant. Fortunately my consultant happened to round the corner just at that moment and ordered the porter to get me to CT without any further delay.

Back on the ward the long wait for results began. I knew it was bad when not one but 2 consultants, 2 registrars, and the ward sister turned up. I was even more convinced it was bad news when my consultant squatted down beside the bed. I won't bore you with the details of the conversation, mostly because I was so shocked I only heard half of it. The echo showed a big difference from the one I had in April. My pressures are up, up,up and the right side of my heart is not coping with the rise. The only thing they can do is get a Hickman line inserted and start me on Flolan. Because I am so ill they are writing to my PCT as an urgent case and with luck I'll be back in 2 -3 weeks to have the line put in. In the meantime I'm grounded. I must not walk, climb stairs, lift carry etc, etc. On the plus side no signs of any clots and both my lungs and my arteries are coping well, for the moment. With every cloud etc. Oh and the transplant team are being given another kick up the backside and told to get a wriggle on.

I'm Busy Doing Nothing.

Bored, bored, bored.

Everyone dreams of that day when you have time to yourself to spend the day just lazing about watching favourite DVD's and not having to interrupt yourself to cook, wash up or go shopping for other people. However when it is enforced it sort of loses its appeal.

Today I have managed to stagger onto the patio where I sat on the wall in the sun and pulled some weeds coming through in the herb garden but that was the only activity of the whole day. Worst still I have have another day of this inactivity to go. I am going to drive myself, and everyone else, mad. There is nothing else for it, I'm just going to have to get the beads out again. I enjoy making bracelets but don't usually have the time, I think this might be the answer to my current problem provided I can concentrate, I'm so restless I can't focus on anything.

I had a letter from the Brompton on Saturday, it was just changing the date of my clinic appointment in August, they like to think ahead, and I now have to go in on the 26th. I also received an e-mail regarding this hypnotherapist/counsellor they want me to see. I have an appointment to see her this Friday at 2.30. I think the first problem may be the language barrier as I had to listen to the message four times before I got what she was saying because her accent was so strong. Not a good sign. The second problem is the timing. As I'll already have been to London twice in a week a third visit does not appeal. Obviously if they decide to keep me in for treatment then there will not be a problem as I'll already be there.

I am preparing for battle with my local warfarin clinic on Tuesday. If you remember I had a bit of a run in with them recently as I had to skip a couple of weeks due to work commitments. Well the date they have given me is Tuesday, and where will I be on Tuesday? In the Brompton. I will take great pleasure in ringing to cancel my attendance, letting the receptionist have a little rant and then calmly explain that I am in hospital where my INR is being very carefully monitored and as of Friday 6th was a stable 2.5. When you are this bored it is the little things in life that you look forward too.

My son's have had a busy weekend with both attending parties. Laurence went to Leeds for a friend's 21st while Andrew stayed closer to home for a 'chill out' with friends. Laurence was of course an over nighter but Andrew was supposed to return home around midnight. I could feel my blood pressure rising as we approached one o'clock. When he finally rolled in at two I was too tired to tell him off but this morning he is in no doubt that in future if he is going to be later than expected to let me know. I don't suppose the neighbours were to thrilled either as that bike makes one hell of a racket.

This Is The Road To Hell

I hate going into hospital. I'm needle phobic and the first thing they tend to do is take blood. The second thing they like to do is stick a cannula into your arm 'just in case we need to give you intravenous drugs'. My usual response goes something like this, 'here's a novel idea. Why not leave the cannula out until it is actually needed, saving the hospital some money and the patient unnecessary pain and stress?' This question usually leaves them completely dumbfounded and they tend to hover next to your bed not quiet knowing what to do. Those that have encountered me before don't even bother bringing the stuff near me now as they know what they are up against. I'm not an awkward patient or a demanding one but there are things I will put up with and there are things I definitely will not put up with. The criteria is whether I think it makes sense, if it doesn't and they cannot justify why they want to do something then it does not get done. Simples! Fortunately my medical team tend to share my philosophy so it is rare that we go head to head.

The first obstacle to overcome is the journey there, we live just off the M1 which is undergoing extensive road works at the moment. The speed limit is currently 50mph but we often end up doing significantly less for no apparent reason. Today of course, just because I DON'T want to get there in a hurry the roads are clear and we make it in just over an hour.

Things move fairly swiftly when I arrive with a bed ready and waiting. I have the obligatory blood test and ECG and am then sent down to x-ray. All within an hour of my arrival, a miracle in itself. Now of course we have the waiting game for the first set of results to come in and to see the consultant. I am given the lunch menu and from the rather horrible options choose lentil soup, fish and chips and fresh fruit. The one really good thing is that now you can bring your own laptop in and connect it to the hospital wireless network, excellent.

1630 and at last the consultant looms over my bed brandishing the results. On the whole things are not looking too bad but there is always one fly in the ointment and today it is my BNP (Brain Natriuretic Peptide) levels. This is a protein that is produced by the heart muscle when under stress. Normal people generally will have a result under 5, most people with PH range between 10 - 30, mine has hovered around 20 since diagnosed. Today mine was 215! The consultant was almost having apoplexy. Obviously the priority is to find the cause so I'm now down for a CT scan and yet another echo. These are booked for Tuesday morning, so I have been kicked out to wait on the solemn promise that I will do nothing but sit for the weekend. They are reluctant to commit to any form of treatment until the results of these tests are in but they are going to fast track them so I'll have them that day. Depending on what they say it will either be treatment or more tests. Whatever they do this is looking less like a quick fix.

Shoot The Messenger

OK I am willing to believe that Bin Ladin is either dead or captured and being held somewhere very secret. This is simply because if he were still alive and free he could easily release another video showing him with a newspaper dated after the supposed killing took place. For that reason and that reason alone I think the American's got him one way or another.

Finally got the long awaited call from the hospital to say that due to the two bank holidays they are over loaded and cannot possibly fit me in until Friday. If there is a cancellation tomorrow or someone is discharged early then I am at the top of the list but I'm not hopeful. When I do get in it will just be for the day for loads of tests and then back the following week for the results and any treatment they may decide to give me. Obviously if they think I am really bad then I'll be kept in but ironically I've been feeling a little better today, wouldn't you know it. I wish there were instant fixes but it seems the wheels of medicine, like the wheels of power, grind slowly.

 My rash was diagnosed as Eczema by my GP which is a huge relief as Shingles, which is what it was thought to be, would be very bad news indeed. I have been given steroid cream and told not to scratch. However when I told my specialist this she went very quiet then said.
'How interesting. Have you had this before?'
'Well no or I would have recognised it.'
'Hummmm, we'll have to look into that.'
What the hell does that mean? Medics, never get a straight answer.

Spent the day catching up with paperwork and watching TV. Had a nap in the afternoon with the cat. Andrew had the first of his Physics practicals today, seems to have gone OK but I'm worried about him, he seems to have lost his usual confidence. I think it is because he doesn't really know what he is aiming for. He changes his mind every day. I know that it will all turn out OK for him in the end but he seems all over the place at the moment. Put Laurence's watch on ebay for him. It is a really expensive Maurice Lacroix that he won in a competition. He says he'll never wear it, which is probably true as he never wears a watch, so he'd rathwr have the money to buy something he does want. Kids!

Take My Breath Away.

Well things are going down hill so rapidly I'm wondering whether I'll ever climb back up. Spent the day waiting to hear from the specialist center, by 3pm I cracked and phoned them. The secretary took a message saying they were all out at the clinic or on ward rounds but she would pass the message on to the first person through the door. Hope that is sooner rather than later.

Got two letters from the inland revenue. One telling me what this year's tax credit will be. The other told me they had miscalculated my payments last year and now owe me nearly £400. In fact they owe me than they say I owe them so why not forget paying me back and just take it as payment? A classic case of the right hand not knowing what the left is doing if ever I saw one. Which reminds me, must dig out my evidence and write that shitty letter.

In the news five people arrested near the Sellafield nuclear plant under the terrorism act. Well, well, well that didn't take long did it. Unless of course they are innocent tourists that have been jumped on by over twitchy security for 'looking at me in a funny way and possessing a beard.' Time will tell, eventually.

My tomatoes have survived their first night outside but am not happy to hear we are expecting a frost tonight. Operation wrap up will begin at 1800 hours, dammit. I have carrots! And Basil and some of the flower seeds I've planted have also started to appear. No sign of the Sweet Peas yet though but I'm still hopeful. It is such a shame that it is slightly to cold to sit in the garden, there is nothing I like better when not feeling well than to sit in the fresh air and listen to the birdies singing.

Today has been one big struggle. I've struggled to get out of bed, bath, eat, drink, walk or take my meds because I just can't breathe. I've also struggled to keep my temper and my good humour as the frustration is already setting in. I hate these bad days especially when they turn into bad weeks or months, as this one is threatening to do. This time last week I was, well not exactly fine, but able to talk walk and do most of what I wanted to do without the need to rest every couple of minutes. Now even going up and downstairs on my bottom is too much effort and leaves me gasping like a fish out of water with the effort.

Finally got the call, am being admitted as soon as they have a bed, hopefully tomorrow but more likely Thursday. In the meantime I have to go to see my GP tonight and get an assessment as to whether I need to go to my local hospital until a bed comes free. I hate my local hospital with every fiber of my being so I will not be going there unless I'm unconscious and have no say in the matter. And even then I'd object.

Ding Dong The Witch Is Dead.

Or is he?

Let me just say that I am not out to offend anyone with what I'm about to write, this is just my opinion.

There are two arguments I'd like to put forward, the first being is Osama Bin Laden really dead? How do we know? We were not there and haven't seen any proof, as yet. It all seems a bit strange to me. They say they gave him the opportunity to surrender, then shot him. How many were there against him, couldn't they possibly overpower him? To me if he really is dead and the way he has been disposed of (the term the Americans used) not only is suspicious but results in a very hollow victory for the victims of 9/11 and 7/7 and their families. They may be cock-a-hoop at the moment but when the euphoria dies down the doubts will set in and drive them crazy. How much better would it have been to capture him and put him on trial as they did with Sadam Hussain. We all know he would have died in the end, it was inevitable, but how much more satisfactory for those grieving to SEE justice done rather than hear about it happening. To be frank dumping him at sea just leaves a bad taste in the mouth and skeptical mind wondering.

The second point I'd like to make is if he really is dead and his followers believe this we should be scared, very scared indeed.  If anyone thinks that killing Bin Laden means everything is over think again. We are going to see a backlash of unimaginable proportions. Nowhere is going to be safe if you are American or British or have connections to either country. Personally I think the way this has been done has just set the match to the tinder box and over the coming months we will find out just how nasty things can turn. What has been done had to be done but it is the way it was done that needs to be questioned.

OK enough with the serious stuff.

Still debating whether I am ill enough to warrant not going in tomorrow.  I feel OK when sitting watching TV or using the computer but if I try anything beyond a short, gentle stroll I become breathless and get chest pain. I know some are reading this and thinking WTF, stay at home you daft woman. I would be one of them if I were reading this as a stranger but you don't know what it is like at the moment. We are so short staffed, a situation made worse by one of our number leaving last week and not being replaced, that I feel so guilty if I take anytime off at all. And lets face it, I have had a lot of time off over the last year. It worries me what they think. Do they think, Hazel's off AGAIN, what is it this time? Or do they realise that I really cannot help it and that things can only get worse as this is a progressive illness. Having said all that my supervisors have all told me that they really understand and knew what they were letting themselves in for when they took me on and if I have to take time off, then I have to take time off. It is hard when you've been used to crawling in feeling like death warmed up to find you suddenly cannot do that anymore. A simple cold turns into something serious 90% of the time. While a chest infection can become something far more dangerous in a very short time. A least I suppose I do have a real reason for being off but it doesn't make me feel any better. Oh what to do?

Ventured out this afternoon to a nearby garden centre where we bought Clematis (pink) and a couple of tomato plants. Had to sit and watch Andrew and Peter plant them for me, which sort of takes some of the pleasure out of gardening. The wind has turned very chill and the clouds are increasing. I'm secretly hoping for rain, if not Andrew will be out with the hose tonight making sure my herbs don't keel over.