Friends, Roman, PH Sufferers. Lend Me You Support!

Arrrrgggghhhhh! I could just scream and scream! However I haven't got the breath for that so have resorted to sending emails instead. I don't think I need to explain, I think the following says it all.

Mr. Gordon

Once again I have to write to you because once again I have been let down by your company.

I last wrote to you on 23/05/2014 because no one had bothered to ring me regarding my stock check and I’d been unable to get through on the phone. I duly got a call, after what I presume was your intervention, and the stock numbers were passed and arrangements made to collect the excess Flolan stock, and the two cadd pumps I still have waiting to be sent off for service, since last August.

This morning I went onto your website and got this message

Delivery driver: Not Yet Known

Delivery Day :30 May 2014

We currently estimate that your delivery will arrive between 08:00 and 10:00 today.

By 10.30 nothing had arrived so I rang your company to find out where the delivery was. After hanging on for 17 minutes I got through to someone who said she’d check and promptly put me on hold for a further 4 minutes. When she returned she said that there was no delivery scheduled today and that the order was still with the pharmacist. She could not tell me when this order will be delivered.

You do not seem to get that in order to receive these deliveries one of us has to take time off work. Even our employers are getting fed up with us taking a morning off to receive the delivery only to be told we have to take another day off because it didn’t arrive. Not only are you messing with my health and my life but you also seem intent on getting us all sacked.

Your company is a disgrace!

And please do not get one of your minions to call me like you did last time. I am beyond being soothed by someone going on about the difficulties your company has had lately. Frankly that is not my problem. My only concern is that I get the correct medication on the correct day at the correct time. If that is too much for you then you are in the wrong business.

Oh and finally could you tell you call handlers that when someone is complaining that being patronising and saying they understand does not go down well. They don’t understand because they are not the ones on the end of the line hoping they will still be alive on Monday without the medication they need.

You disgust me.

And then this morning I sent this.

Mr Gordon

Further to my email of 30th May, I have now received my medication. It arrived at 1750 yesterday. However only the drug arrived, I did not get the solution to dilute it, needles, cassette, batteries or indeed any of the items needed to prepare and administer said drug. What to you expect me to do? Inhale it?

So after another stressful weekend of appalling service a journalist friend of mine has decided to take up the cause. He has a nationwide radio show, actually the show is also broadcast in many other countries too and will be featuring your company on an upcoming show. He has also contacted journalist friends of his at The Sun and the BBC, who are very interested.

I have agreed to be interviewed and to make available the emails I have sent you, but it won’t just be me talking. We are in the process of recruiting other patients who are receiving poor service from your company. You see Mr Gordan we patients actually talk to each other so we all know these are not just isolated incidents. There are dozens of us who are more than willing to talk simply because we have had enough and can’t take it anymore.

No doubt I’ll be in touch again soon.

The kind gentleman offering to help is Paul Pennington so it you have experienced any problems with H@H please message me, or Paul if you know him, with your story. You can remain anonymous if you want, we just need to know what is happening and to how many of you. The more the better or H@H will just claim it is a few isolated incidents.

What I need.

So aside from dealing with Healthcare at Home what else did I do yesterday?

Well refusing point blank to stay at home, well I had things planned, Andrew agreed to stay in on my behalf, he wanted to clear his room out anyway, and Peter and I went off to do the shopping. As Peter wanted to pick something up from John Lewis we went to Milton Keynes and, briefly, called in to the shopping center before heading for the enormous Tesco they have near junction 13 of the M1

The first thing that struck us was the traffic. It was worse than a Saturday out there and we wondered what on earth was going on. We got stuck in a tail back on the way there so avoided the motorway on the way back. The shop was a nightmare and littered with flags in preparation for the world cup starting soon. There were also huge displays of beer all over the place which I found really sad. Can't anyone enjoy anything these days without alcohol being involved. Don't get me wrong, I'm not anti alcohol at all. I like a crisp cider or a cool Pimms on a hot day as much as anyone. What I object to is the effects of too much alcohol and the way you are viewed as weird if you don't drink to excess at every given excuse.

What I got.

Anyway we got our shopping done in record time and just got out of there, it was manic and tempers, including mine, were beginning to fray. I did have one incident though. I ran a child over with my trike. In fairness the child had run out of a side aisle right in front of me where they caught their foot on the front wheel and landed with a thud on the floor. I was bracing myself for the inevitable protective parent but was pleasantly surprised when, after checking the child, the woman gave it a telling off saying 'that's what happens when you run around when you are told not too.' She then made the child apologise to me and did so herself. It seems there are still some reasonable people about.

Back home Andrew presented me with a load of stuff he wanted me to sell on ebay for him and proudly showed me around a room where you could see the floor. He hasn't got around to vacuuming the floor yet but that would probably be too much to ask all in the same day. He's off out earning money today and tomorrow so I expect Monday might just be possible.

And Healthcare At Home

Right, time to get myself stressed yet again by setting myself up on Skype. My sister has it and thought it would be nice if I could get it too so we can have a proper natter now and then. It certainly would, if only I could get the thing to work. Tried for over an hour last night and just couldn't get connected. At least it will take my mind of H@H for a few hours.

Appreciating What I Have

No matter how much I moan about it or how much I'm warned against going, I've finally worked out why I go to work.

It's not the money, though of course that helps, it's not the companionship, though I am deeply grateful for the friendship and affection I feel from my colleagues. I go because it is one of the best therapies in the world. I deal with funny, sad, stupid and utterly bizarre situations every single day and each time I finish a call I find myself thinking 'I'm glad I don't have your life mate.'

There are so many people out there who just don't seem to be able to cope with the basics of life such as just talking a problem out. Others are in situations that they feel they have no way out of and then there are the vast majority who just seem intent on making things worse for themselves and everyone else around them. I really do not understand how, or why, people can't just talk to each other these days. It seems everyone thinks they are on Jeremy Kyle and expects someone else to sort out a problem that only a few years ago would have been worked out with a shouting match and a bit of sulking.

Coming home after a day of such problems I walk through the door at home and back into normality with my normal kids, normal husband and normal cat. Yes we have had our problems, and yes, I'm pretty sure we'll have more but that is what life is about isn't it? And each time I walk through that door and hug Peter I am so grateful that tonight we'll sit on the settee and watch something on TV and just be content. Some people thrive on drama, last week proved I really don't. It's the calm life for me without question.

A more relaxed Andrew with (a slightly less relaxed) Smirnoff

Not all drama can be eliminated however and as I'm typing this I'm waiting for the next round in my ongoing battle with Healthcare At Home.

I'm due a delivery today and their tracker says it will arrive somewhere between eight and ten so they have approximately forty minutes to get it right. Of course getting the delivery on the day promised and at the time promised is only half the battle. You then have to hope and prey that what they have delivered is actually for you. Last month I had all sorts of problems, as documented in this blog, and from reading the PH face book page the problems are ongoing with several people complaining that H@H have got it wrong again. Honestly I really don't get this company. How hard can it be? Still there is no point in getting worked up until the problem has occurred. Will this be the delivery where I don't have to ring them to complain about anything? I doubt it but we live in hope.

On a brighter note I am hospital free this weekend. No check ups, no warfarin checks, no tests. This is a rare event for me because I've usually got an appointment for something or other on a Friday. So what am I going to do with this free day? Well nothing at the moment as I'm sitting waiting for sodding H@H, they are now late by the way, and drinking tea. If only the weather was better at least I could do my waiting in the sunshine on the patio but I can't. Once the delivery has arrived, if it arrives, I've decided to do the grocery shop in the hope that if things improve on Saturday and Sunday we will then be free to make the most of it. I have to say that, considering it is June on Sunday, the weather is pretty pants and I've taken to wearing socks around the house again as my feet are so cold.

We have had good news this week though. Andrew has passed his finals so all we have to do now is wait for the verification and then he can register as a fully qualified paramedic. I have to say it is a big sigh of relief all around, and I have my lovely sunny boy back instead of the rather prickly, tense one I've been living with for the last few weeks.  His mood has been further lifted by the amount of work he is getting from this private company. He is attending a weekend event in London Zoo and Regents Park this weekend and then he is off to a fashion event in London mid week. The money he gets is very good and he is using it to pay for his C1 training and test, which he has to complete before he starts work. He will be reimbursed once he starts work but he has to pay up front, which I think is a little unfair considering he is a student and the course is over a thousand pounds.

Right time get onto the phone to H@H to check my delivery is actually arriving today. That's another hour on hold I'm never going to get back.

Brushing Myself Down and Starting Again

Well despite the weather taking another slide into autumn I'm actually feeling a but more positive today. I guess I just needed that one day of feeling really down before I could pick myself up and move on. It also helps that I've woken up feeling much better. I was quite poorly midweek but this morning I managed the stairs without feeling puffed out and exhausted by the time I reached the top. I've also made a conscious effort to stop checking everything every five minutes so I'm also feeling a lot less tense. I don't think I'll ever get back to being as relaxed about the pump and line as I was but maybe I needed to be shaken out of my complacency, maybe I'd become a little too comfortable with it.

I suppose there is one good thing to come out of all this. The freezer is now crammed full of spicy lamb tagine and chicken curry so if I got the call tonight my boys won't starve, at least for this week. My appetite has also returned and I haven't lost as much weight as I thought I had so that is also a bonus. I'm planning a huge plate of pasta for lunch today in the hope it will give me some of my energy back as I'm still struggling a bit with fatigue.

So yesterday, as I was in such a mood I got on and forced myself to do all the mundane boring stuff such as the ironing, cleaning out the kitchen and bathrooms and a bit of dusting. I was shattered afterwards but my anger had been put to good use and the result was a very shiny bathroom and kitchen. I had to light a couple of incense sticks afterwards though as the smell of bleach was a bit overwhelming. The only things left are the floors but I can't do them myself so Andrew has promised to give them the once over tomorrow. He is providing medical cover for the Reading Carnival today so is a bit tied up.

As he is nearly qualified, he actually registers in August, he thought he'd get some practical experience, and earn a bit of money, by joining a private agency which covers outdoor events through the summer. So far he's cover the Milton Keynes run, a run/carnival outside Buckingham Palace and several other village fetes. The most serious thing he's had to deal with so far is a broken finger. However he has got to meet some minor politicians and celebrities who turn up to give prizes etc. Most notable among these are Ed Mililband, and Mo Farah. Seems like he's having an awful lot of fun and has now been instructed to 'get autographs'.

Having not taken much interest in the local elections I spent the late evening eagerly watching the results come in for the European elections. By the time I went to bed at just past midnight UKIP were already in the lead so I wasn't at all surprised to see they'd trounced the other parties when I read the newspaper this morning. This has left me with distinctly mixed feelings as I wanted someone to slap the other parties around the face and tell them to get a grip. However I'm not sure I wanted UKIP to be the ones to do it. Will they make much of a difference? I doubt it but one things for sure, unless the main parties start listening to the common man, it is going to be a very interesting general election next year.

Britain's Got Talent Watch

Well it was the last of the auditions and just when you think you have got home free and dry along comes 'pretentious child'. PC was everything I hate in child performers, huge ego, mediocre talent and zero charm.

The trouble I've had with this year's BGT is that all the really good acts are not British at all. We have an American puppet, a Canadian magician and French dancers to name but three. Being a bit of a purist I would really, really like a British act to win this year but in all honesty I don't think we have a chance. As usual the non British acts are a million times better than us and will probably beat us at our own game. I am so torn. My favourite act, the group that turns themselves into robots using LED's, is fabulous and worthy winners but they are not British. However if I support a British act who would I choose out of the endless boy bands, girls bands and one dancing granny, and even she has a Spanish partner. I would really, really like the winner not to be either a dance act or a band but that means the winner probably won't be British. Arrrggghhhh! I give up, as long as it isn't that damned purple puppet I will be content.

So back to last night's efforts. Apart from PC there was a comedian and impressionist who was surprisingly good and the rest, well to be honest were mostly singers and were mostly mediocre. I did like the Meatloaf tribute act though but probably for all the wrong reasons as I found him hilarious. To be honest I can't remember any of the others well enough to make individual comments, yep, I was that impressed.

So we then had the spectacle of watching the judges knock over two hundred acts down to the final forty. I've never understood this part of the show. The 'discussion' always seems so forced and rehearsed and I've never understood why they have to drag all two hundred acts up to London or wherever, in full costume, just to tell them to go home again. Why not just send them a nice email?

The live shows start tonight and are on every night up until the grand final at the weekend. Needless to say I will not be commenting, or indeed watching, every show. For me the fun bit is over as I always find the bad acts much more entertaining than the good ones.

Right time to get going on that pasta. I am intending to go back to work tomorrow so, providing nothing else goes wrong, the next blog will be on Friday. Take care.

Over Thinking

The weather has improved today but unfortunately my mood hasn't. I feel inexplicably sad today. Almost as though I am mourning. It is very hard to put my finger on anything in particular that is making me feel this way but I just do.

I slept really well last night, mostly from exhaustion at my early start than anything else. I'd spent Saturday relaxing in front of the TV or baking in the kitchen but my concentration was poor and I really wasn't in the mood for anything. I enjoyed the Grand Prix qualifying at Monaco and will no doubt be equally enthralled with the race later today. I love the Monaco GP and that is one of the things on my bucket list to do post transplant. I want to see the Grand Prix in two places. Silverstone, the easier of the two to accomplish, it being in the UK and not far from where I live, and Monaco. Unfortunately I'm not allowed out of the country at the moment so that is one that is going to have to wait.

I know it sounds stupid but I really wish I hadn't had that false alarm now. I'm back to jumping at every phone call and I'm worried that next time I'll be really scared and not as calm as I was on this occasion. I also worry that that might have been my one and only chance and that I'll never get another call. If I do, well I imagine I'm in for another long wait. It took seventeen months for the first call and I'm gearing myself for a similar wait before the next one.

On top of all that the confidence I had in my pump and line has gone completely and I find myself constantly checking the pump and connectors. I know I've been lucky in that in the three years I've have the line and pump I've only had two major scares with it. One a couple of years ago when I split the line and of course last week's mishap with the faulty connector and blood clot. However at the moment I have severe OCD about it and can't relax. I've even taken to taping the line to me at night so it cannot get kinked or twisted when I sleep, as a result I go to bed bristling with tape. I know it is ridiculous and unhealthy but I can't help myself. Logically I know that to get faulty connectors or lines is extremely rare so to get a similar failure is very unlikely. I also know that once the clot had cleared the line there is very little chance of getting another one, especially as the pressure of the drug is keeping blood out of the line again, and I'm on a higher dose of Warfarin but I'm terrified of it happening again. Maybe I would have dealt with this event better if it hadn't come so close to the false alarm. Who knows? All I do know is that I'm dealing with it very badly indeed at the moment.

For lunch I made a chicken curry from scratch, again another distraction technique, and couldn't eat it. Not because it was bad, both Peter and Andrew declared it delicious and had seconds, but because I just didn't feel like eating. I feel as though I'm in some sort of holding pattern and can't get back into my normal routine. Maybe when I return to work on Tuesday (I'd booked Monday off ages ago) things will start to slot back into place and I will begin to relax a little.

Tomorrow, if the weather continues to improve I plan to spend some time in the garden with a book or my paints. I haven't been able to do anything over the last week because I just can't concentrate.

The worst thing is that I know I'm my own worst enemy. I over think things and drive my family crazy. I'm fairly good with the everyday stuff such as choosing a restaurant or a film or a play to go and see. It's all the other stuff. Moving house, changing jobs/banks/cars, holidays. Look how long it took me to decide to go for a motability car. I'd been eligible for years but I couldn't see the point. The car I had was fine right up until it wasn't and I got scared of driving home in the dark in case it broke down and left me stranded. Then once I'd made my mind up to get one I had the make/model/colour thing to contend with.

It's not that I'm indecisive, far from it, in the past I was often accused of not thinking and being too impulsive. The problem is that being married and having kids means that your decisions now affect other people and so they have to be more considered. After decades of considering other people I'm totally out of practice of making decisions just for me. Also being ill changes things a lot. Now I will make a decision and think 'oh wait a minute, what if this happens or that happens' and before you know it I've talked myself out of it. My problem is that I've become far to aware of the consequences of getting it wrong.

Yesterday I made up a week's worth of drug. I changed my dressing, cleaned the entry site and changed the connector, line and pump. Everything went without a hitch and there was no sign of blood or infection at the entry site and I checked the connector over three times before using it. There have been no problems since so I'm hopeful that will be the end of it. The hospital had said that if there were going to be any problems they would arise when I changed the line and connectors, as that's when the inward pressure on the line would be temporarily interrupted. There was no problem during the change or after and it is almost twenty fours hours on so I should be able to relax now, shouldn't I?

Oh well, I think I've rambled on enough for one day. Tomorrow is another day, and hopefully it will be a better one.

Cooking Comfort Food

Yesterday I was back at Papworth to get the results of the CT scan and other tests in preparation to be put on the bilateral lung list as well as the heart/lung list.

Overall the results were good. My 'unusual' plumbing can be dealt with during surgery, as most of it is in the area that they remove, so I am OK from that aspect. The antibodies are a bit more complex. There are some that can be ignored and some that could cause problems, so although the donor pool has now widened, it is not quite as wide as they were hoping. Still, an increased chance, is an increased chance, and I'm just glad that they didn't turn around and say nothing could change.

We discussed the events of last week and they took some blood to check for any infection, though both they and Brompton say that if I was going to get an infection I'd have signs by now such as a high temperature and feeling unwell. Neither of these things have happened and, in fact, I'm beginning to feel well again now that things are settling down.

Also up for discussion was the false alarm. They explained once again that the donor had aspirated stomach acid into the lungs which made them unsuitable for transplant. I found it distressing to hear that the donor was such a perfect match that, on that occasion, no adjustment for antibodies had to be made. Bugger! I was told to take consolation from the fact hat I now had a better chance and they would be actively looking for me.

This morning I was awake just after four and lay listening to the birds coming to life while mulling over what might have been. If all had gone to plan I could have been sitting up eating, talking. I might even have had my first session on the exercise bike. It was not my time however, and I have been tested just that little bit more. Will my breaking point ever be found I wonder?

When I'm upset or just need time out from thinking I turn to cooking. Some would think I'd turn to my art or photography but they are activities where some degree of thinking is required. Cooking I find more instinctive and I appear to have the ability to cook a dish following the recipe once or twice and then remember it and adapt it to my own tastes etc.It is an activity that, for me, requires little thinking, keeps me busy and has a more productive outcome than just sitting around worrying. The more complex the dish the more creative I can be with it and the more time it takes out of my day.

So here is my Spicy/Sweet Lamb Tagine, cooked on Thursday. If you do not have a tagine a heavy bottomed casserole pot, with lid, is ideal. This recipe serves 4 - 6 and is good for freezing. The dish can be eaten hot or cold with rice, cous cous or flat bread. Enjoy.

You will need...
3 (45 ml) tablespoons of avocado or olive oil
1 large onion roughly chopped
1 (15 ml) tablespoon of garam masala
1 1/2 Ibs (750 g) lamb cut into cubes
2 cloves garlic finely chopped
1 can (14 oz/400 ml) chopped tomatoes with juice

Stir together the meat, onions, garlic and spice

2 medium carrots cut into coins
1 medium courgette/zucchini diced
Approx 8 - 10 dried apricots sliced
! small can chickpeas (optional) drained
1 tablespoon (15 ml) liquid honey

In the bottom of the tagine or casserole heat the oil over a medium heat. add the onion and cook, stirring, for 5 mins. Add the garam masala and the lamb and garlic and stir well until the meat is coated with the onions and spices. Cook for 6 - 7 minutes until lamb is browned on all sides.

Add tomatoes, carrots, courgettes and apricots

Add the tomatoes with juice, carrots, courgette and apricots and bring to the boil stirring frequently to stop meat catching on the bottom of the pot. Cover with lid, reduce heat to low and allow to simmer for 1 hour stirring every 15 - 20 minutes.

Stir in the chickpeas, if using, and honey. Tip for the honey. Rub a little oil over the spoon before dipping in the honey pot. It will stop honey sticking to the spoon without flavouring it. Replace lid and cook for a further 15 minutes.

If freezing this dish do so separately from any rice or cous cous. Both will suck up the liquid and become soggy while making the dish itself dry.

Ready to serve

Today I'm going for simplicity and a quick pasta simply because I'm totally shattered. I am really hoping that I can just veg out without any more drama for the next few days. I wish the weather was as it was last weekend but it is not, it is piddling down so I'm stuck on the settee, again! Oh well, I guess that is just the rich pattern of life when you have any sort of illness, not just PH. More tomorrow.

Home (Again) and Grounded.

Well what can I say. I think I have just lived through the most stressful five days of my entire life. However it is over and I made it through without major physical or emotional trauma, well maybe a bit of the second one.

Another day, another hospital.

Having had not pump problems for over 24 hours I was finally sent home around four yesterday afternoon. After much head scratching and discussion between myself and the PH team we all came to the conclusion that the backwash of blood from my earlier split connector must have clotted in the line. This caused massive concerned because it meant I wasn't getting my drug. However by forcing the pump to work I must have either broken the clot away and flushed it out of the line or dissolved it. Whatever the cause, as the pump was now working correctly and I was obviously getting the drug, the decision was to let sleeping dogs lie and not interfere. So all the planned flushing and fiddling was shelved and a 'wait and see' approach was adopted instead. This was fine by me. It meant spending a night in hospital with the prospect of an early release over having to wait around with a canula in my arm until my line could be replaced.

Lasagna apparently.

Whilst there I enjoyed the delights of the hospital meal. Well it doesn't get any better I'm sorry to say. First up was breakfast when I was presented with a fortified orange juice. This was a much larger portion of juice than I was used to in hospitals so I was rather delighted. Then as I picked it up I noticed a label on the edge of the container. This juice was meant for another patient on another ward. I pointed this out and my lovely looking juice was removed and replaced with something resembling dirty water but masquerading as apple juice.

Around mid morning I was given a menu for lunch and I chose the lasagna figuring there was very little they could get wrong. How mistaken can one girl be? Lunch arrived and with much anticipation I raised the metal cover to find.....a chicken leg and a pile of chips in a small puddle of gravy. I decided not to bother making a fuss and eat what was put in front of me, it wasn't good but it wasn't totally inedible, unlike the ginger cake I was presented with later that afternoon. That could definitely have been used to clean cars or something.

A crime against cake

Late afternoon and my x rays, blood results and infection tests were back and all clear. The decision was made to send me home with Carl on speed dial on my phone in case of further problems. I'd spent an almost sleepless night in hospital listening out for the pump to start alarming so once home, despite being nervous, I crashed out pretty quickly and slept past nine this morning.

I've been told to take it really easy. I'd been without my correct dose of veletri for going on eighteen hours and I was beginning to feel the effects. My breathing was worse, my blood pressure was up and my SATs down, though these had begun to climb again during the day. It's going to take a few days to get back to normal physically and a lot longer I suspect to regain an mental and emotional equilibrium. So I'm going to follow advice and hibernate for a few days to mull things over and to, literally, get my breath back. I will have to go out tomorrow though as I'm back at Papworth to collect the results from recent tests and 'have a chat' about why the transplant didn't go ahead. I don't really want to talk about it but it may help to fully understand what happened.

Someone was so pleased to see me
he curled up next to me in bed.

So it is off to the settee with some fruit and a good film where I might have a quiet cry to myself because I think I might deserve it.

Set Backs

To say this hasn't been my week would be something of an understatement.

Over the weekend I had the emotional rollercoaster that is a false alarm for transplant. Yesterday I was back at work and got some lovely hugs from colleagues. This morning I wake up covered in blood. You know, just an average occurrence in anyone's life.

Joking aside I knew I was in big trouble for several reasons. A leaking line is always a big infection risk. Blood coming out of the line means nothing is going in so I was probably not getting the dose of veletri I was supposed to be getting. Now a lot of people do not realise how crucial this drugs is. Basically it keeps me alive. To be without it for a short time causes massive problems and anything over 24 hours would kill me as all my veins and arteries slowly closed up. The first thing I did, after screaming, was clean the connectors with alcohol and wrap them in sterile dressings. I then checked the site entrance for any signs of damage or infection. Nothing there. I checked the pump and it was still going. So the  logical conclusion was either a blockage or damage to the internal line.  So I did what has been drummed into me since going on IV medication and called the Brompton for advice.

I got through to the PH ward and a nurse on the other end hadn't a clue what I was talking about. Her English was very poor so I don't know if she actually understood what I was saying. I was passed on to another nurse who passed me onto the cardiac on call registrar. It was 0630 so none of the regular team were in yet. I explained the problem. He asked for my hospital number and looked me up on the computer. He then said he couldn't help and it would be best if I waited to talk to the PH team when they got in. No one seemed to grasp that this was an emergency, well to me anyway.

By 0830, having failed to get hold of anyone and still bleeding Peter had enough and we set out for London. Half way down the motorway Carl called in response to my increasingly frantic messages. Yes this was definitely an emergency and he would be waiting for me on the ward.

When I arrived it wasn't just Carl but several doctors waiting for me. The first thing they did was check my pressures etc to see if I was having any bad effects. Thankfully I was fine and everything was normal. They then examined the line very carefully and discovered a spilt in one of the connectors. Between  the line attached to me and the line attached to the pump I have a connector that acts as a one way valve. This had fractured. We changed the connector and then hung around for several hours to check the result. Now the pump pressure had been restored the blood was pushed back along the line and it appeared the problem was solved, right up to the moment I hit the M1 on the way home.

My machine alarm went off indicating high pressure, which meant the drug was not getting through. I was driving so Peter reset the machine and it did it again and kept doing it every time a dose was delivered. Peter called Carl. He suggested I get home and change everything again, including the pump to see if that would help. It didn't and we were on the road again going back to London with the alarm going off all the way. I was in tears because I just could not understand why all these bad things were happening to me all at once. I felt like I was in a nightmare.

Ten minutes from the hospital the alarm stopped and the pump began to operate normally. When I got to the ward the doctors decided the best thing to do was to keep the pump on and keep me in overnight to see how it behaves. If all is well I can go home (again) tomorrow. If not then they will do what they'd planned tonight which would be to aspirate and flush the line several times to try and move the blockage. They think I might have developed a small clot in the line as a result of this morning's problems and that by keeping the pump going I've actually managed to clear it myself. They can't be sure of course and may just flush it tomorrow anyway as a precaution.

I am relieved that the pump seems to be working again now but I don't think I'll ever be as sure of it as I was. I'm also extremely emotional tonight and keep bursting into tears. I don't know how much more I can take to be honest. People keep telling me to 'be strong' but I've been 'strong' for so long now I don't know whether I have strength to keep being 'strong'. I know I seem to bounce back from every set back but one day I won't be able too and I'm not sure if this isn't that time.

All I want is a worry free, normalish life. Is that really too much to ask? And before anyone goes on about being 'tested' well I think I've been tested beyond endurance now and would like to return to a quite life now, thank you very much.

Oh! And the icing on the Cake? I've been on the transplant list seventeen months tomorrow. 

A Day of Quiet Reflection

It's been a bit of a mad 24 hours that's for sure. I think I've experienced every emotion going and some I made up especially for the occasion. Naturally enough yesterday's blog was about the event. This one will be more about the feelings it evoked and I apologise right now if some of you find it a bit morbid or hard to read.

On getting the call there was the initial feeling of shock followed by enormous excitement and relief. Peter and I actually laughed and chatted excitedly as we got ready to go. Every now and then one of us would become Victor Meldrew and shout 'I can't believe it' before carrying on with what we were doing. It didn't feel real, I really never thought my call would come.

Once the ambulance arrived a touch of anxiety appeared but I immediately pushed it away. This was what I'd been waiting for and wanted so desperately. There was no way I was going to bail. This might be my one and only chance. On route I managed to zone out most of the driver's chatter and I found myself thinking about Kath and John and of course Anne. I'm sad to say I didn't think about Anne for long because I knew I had to focus on the positives. I allowed myself to imagine what it would be like not to drag a heavy pump around with me or to walk along the prom in Aberystwyth, to make it down to the waters edge and dip my toes in the freezing sea. I made a note of the date, May 17th, this was the day I get to be reborn or the day I die. I've always been convinced that I will either sail through and recover quickly or I'll never make it out of the operating theatre. I've never envisaged any difficulties after the operation only during.

Once at the hospital the initial rush of tests and paperwork stopped me thinking too much. At that point I was told about the delay in retrieval but assured that the organs were good and that it was a very good match. We settled in for the wait and discussed the future, something we haven't allowed ourselves to do much of these last few years. For us the future is next week or next month at a push. I was now excited and full of hope. It still felt unreal, especially as I was the calmest I've ever been inside a hospital.

As time went on the doubt began to appear but hope was revived when I was sent off for a shower and put into a gown and compression stockings. Now the excitement was tinged with a bit of anxiety but I kept telling myself it would be the only way I'd get to do all the things I wanted to so I may as well just get on with it. Sitting back in my room with soaking hair, the promised hair dryer never materialised, we jumped every time a porter went past the door. The transplant coordinator popped in and said that it wouldn't be long now, they were just carrying out the last of the tests on the donor organs but as far as he knew we were still good to go. Hope, excitement and fear began to grow.

Half an hour later Paul returned and I knew just by looking at him that it was not going to happen. He was very, very apologetic and explained exactly what had happened. I didn't feel anything, I was numb. I was offered tea, which I accepted and something to eat, which I declined. My stomach was so clenched I didn't think I could swallow.

Heading home we didn't speak but Peter kept reaching across to squeeze my hand. As we got nearer to home I knew I couldn't be bothered to cook besides what I really wanted was comfort food so I was dropped off at home while Peter went to grab a Chinese, my favourite comfort food, and at last a few tears fell. I spent the afternoon sprawled on the settee watching something, I can't remember what, alternatively picking at crisps and sweets or dozing for a few minutes. Peter slept for a few hours and then took his frustration out on the garden with the result that we now have a cleared patio.

The tears finally came around two this morning after several hours lying in bed going over and over in my mind what had happened. By the time the storm had passed I was kept awake by 'essential works' on the railway. I'd forgotten all about the leaflet we'd had last week stating that 'we are going to ruin your night's sleep but as we've told you about it it's OK and you can't complain'. I did get some sleep though as I woke up at seven thirty with red eyes and a muggy head. Terrific!

Today Peter is out at some computer thing so I've had time to think clearly and there are things I can take comfort in. At least there is no doubt now that I am on the transplant list. The fact I got the call less than a month after they classed me as urgent and lowered their standards a bit, may or may not be a coincidence but hopefully not, as it means I am more likely to get another call. Of course there is the over riding fear that yesterday was my one and only chance. I may be right but I'm trying to dismiss the idea, however right now it is hanging around like a bad smell so I'm going to have to try a bit harder on that count.

I have learned that whatever happens I will be supported by so many people that I will never feel alone. I also know that none of these wonderful friends and strangers will mind if I cause another day of stress and anxiety further down the line. I feel so very lucky to have you all.

And last but definitely not least, I am immensely grateful to the donor and their family for giving me this experience. It didn't work out for me in the end but someone has had their miracle because of you. You are very special and I will never forget you and the gift you were willing to give. I thank you from the bottom of my heart and may you forever rest in peace.

Abort! Abort! Abort!

As you can probably all guess from the fact I am posting, today did not go as planned.

Before I go any further I'd just like to thank everyone for their support and good wishes. It really meant a lot to see how many people were willing me to do well. Some of you prayed, some of you cried, most of you crossed something or other and a lot did all three. It was really very much appreciated. I'm just sorry it all came to nothing in the end.

It was 03.53 when I became aware of Peter scrabbling out of bed and charging for the study. He reached the phone just as it stopped ringing and he was on his way back to the bedroom when my mobile started ringing. I answered it sounding very much like a bulldog with a mouth full of jelly, well you do at that time of the morning don't you. It took a while for me to realise what the person on the other end of the phone was saying. I remember quite clearly asking her if she had the right person. I then asked which operation it would be and nearly fainted when she said heart and lungs. I was told to get myself together as the ambulance was on the way.

Wide awake I just stared at Peter and then we both started to laugh. I showered and cleaned my teeth. I couldn't eat or drink but was allowed a few sips of water. Peter got on with letting everyone know. I felt rather guilty ringing so early on a Saturday but those that I rang had insisted they wanted to know so we did. I was speaking to my sister when the ambulance arrived and  I was soon on my way. I wasn't that inspired when the driver said to me 'I'm quiet pleased to have a live patient. I usually deal with the organs.' Cheerful I thought, very cheerful. Peter followed behind with all my baggage. Of course with it being a Saturday we got to Papworth very quickly where my driver overshot and had to turn around. It had not been the best journey ever.

I was taken up to Mallard and put in a side room where I was weighed, measured, asked a load of questions and had all the usual tests including the taking of fifteen bottles of blood. I was told that I wasn't in competition with anyone else, however they were also bringing in a lady for heart transplant so if the lungs were not good enough at least the heart would not be wasted. I was then told there would be a delay as the donor hospital had an emergency come in and had to wait for a theatre slot to retrieve the organs. They expected me to be going down sometime between nine and ten so we settled in for a long wait. At nine I was taken for a shower and given an antibacterial gel to use all over. I was put into a gown and given some very sexy stockings to wear. White ones to prevent blood clots and red ones so I could walk around without slipping over. I looked such a sight Peter couldn't stop laughing.

By now I was getting excited and started planning all the things I was going to do when I got out. Like going down to Wales and actually walking along the prom. I should have know better.

Then the transplant coordinator, Paul, arrived and he looked really worried. The first thing he said was 'I'm so sorry'. The heart was perfect but the lungs were badly damaged. They had performed CPR on the donor and this has forced the stomach contents up the windpipe and into the lungs where the acid all but destroyed them. This had not show up in the initial tests and it was only when the donor was in theatre and being checked over internally that the problem was discovered. So that was that. I was given a cup of heavily sugared tea and sent home.

There are positives, though it doesn't really feel like it at the moment. Someone will get their new heart. I've also gathered a lot of useful information. Things like don't bother showering because you will have to do it all again once you arrive. And prepared to have people doing strange things like measuring you legs etc, etc.


The most positive thing I've learned is about myself. When it really comes down to it I am one cool cookie. I was calm throughout  and even let them take blood without flinching. Everyone else was falling apart around me but I just sailed serenely on. Even now I can't cry, even though I feel as though the bottom has just dropped out of my world. I guess it will hit me at some point but for now none of it feels real. As it is Diana will be visiting tomorrow as planned and I will be back on work on Monday, life, as they say, goes on. I just hope I'm not in for another sixteen month wait.

The Call

Has come. This blog is temporarily suspended. See you on the other side.

A Small Step Forward

Yesterday was another of those days when you start off doing a chore and end up getting an immense amount of pleasure out of the day.

It was my car's first year service and although' with the Motobility scheme, I don't have to pay for it I was still nervous about what they would find to change or replace. So it was with some trepidation that Peter and I set off in convoy to drop it off at the dealers for it's check up. When we arrive the mechanic went around it with a check list and remarked at how well I'd looked after it. Apparently a lot of mobility vehicles are mobile skips as the drivers don't bother to look after them as they don't own them. I was given a time for pick up and off we went to spend another day wandering around in the sun.

We decided to head for Watford town center first and after going around the charity shops, I got three books, we stopped for lunch at the Subway. We were just finishing our meal when Peter made an observation. Not only had I eaten the whole sub but I'd demolished the cookie and finished my drink. 'You ate all your burger and chips yesterday too.' I hadn't realised but not only do I no longer feel sick with this new drug but I also have my appetite back and am eating full meals again. Oh my goodness how strange, and how wonderful. We discussed how this could be possible. Basically Veletri is the same as Flolan but of course the composition is different in order to make it stable in air. Quite obviously the change has been of benefit to me in more than one way. Hurray! That means no more worry bout my weight. I should be able to put it on and keep it on.

In the afternoon we went to Boreham Wood and spent a pleasant hour wandering the high street looking at all the plaques they have there about the film industry. We then headed to Starbucks where I downed a very large Chai before heading back to the garage to pick up my baby.

It seems that my care was evident on the inside as well as the exterior. All they had to do was the usual fluid changes and give it a quick wash. They were happy, I was happy, it was smiles all around.

On the way home up the motorway I wound down the windows, turned up my music and went for it. I couldn't get a comb through my hair afterwards but it was the perfect end to an absolutely brilliant day.

Today I was brought down to earth with a visit to the Warfarin clinic. Fortunately we'd got there early again and I was in and out quiet quickly. However I was there long enough to be put at risk of a bloody cold. Although there were a lot of free seats this enormous woman decided to sit beside me. It was only after she'd been sitting for a few minutes that I realised she had a streaming cold. I'm afraid I did the rudest thing and I got up and moved. I felt a bit awkward because she was different race to me and I really hope she doesn't think I moved because of her colour.

That chore over it was time for the next one and the weekly shop. This week I turned up armed with alcohol wipes and insisted Peter wipe down the trolley handle etc before touching it. When we finished I insisted he washed his hands in alcohol gel before getting back in the car. Why the sudden paranoia? I made the huge mistake of watching The Food Inspectors on BBC1 last night and it completely freaked me out. They tested the handles of supermarket trolleys and it turns out they are basically mobile toilets. I really cannot afford to get sick so it will be alcohol wipes and hand gel for every visit from now on.

I walked around Tesco's without assistance and this afternoon I ran, yes ladies and gents, ran up the stairs in my house. A minor miracle has happened and I suddenly feel really, really well. I cannot remember when I last felt as well as this. I have no idea what has happened. There are several reasons for my sudden flush of health. It could be the weather. I always feel better in good weather provided it isn't too hot. It could be the drug, if my appetite has improved maybe other things have as well. It could be that because I'm eating better I have more energy or, and most likely, a combination of all three. I know it won't last but I'm going to make the most of it while it does.

While we were out Andrew spent most of the day cleaning the decking and sorting out the furniture. Diana is paying a visit on Sunday and if it is nice I thought we could sit outside. All that needs doing now is the grass cutting and the garden will actually start to look more presentable than it has for a couple of years. It was too wet to do anything much last year so it had got a bit overgrown.

In the news I was very saddened to learn of the death of Stephen Sutton at the age of 19. Stephen suffered from bowel cancer for most of his young life and worked hard to raise awareness and money in the hope that one day there will be no more bowel cancer (or any other cancer for that matter) and if there is it can be cured. There are people who do not stay in this world long but achieve so much and there are those that stay for a long, long time and achieve very little. I think we all know which category Stephen fell into.

CT Scans and Sunshine

I have had such a good day today, in marked contrast to yesterday.

Yesterday it rained, hard. It then thundered and blew and then rained even harder. We decided to stay in and I spend a despondent afternoon watching old movies whilst feasting on cooking chocolate, because that's the only chocolate I had in the house.

Off for it's check up in the morning

As a result I slept badly. It was unlikely I was going to sleep well anyway but at least I would have been in with a good chance if I'd got some fresh air and exercise. I was so cross about the weather as I desperately needed something to take my mind off the joys of today.

Today was the day for my CT scan to check my plumbing was able to use the different machines needed for the two different operations I am now up for.

I hate CT scans for a number of reasons. Chief among them is the need to stuff a great big needle in your arm so they can inject a contrast dye which shows up your bits an pieces more clearly. I arrived early and was dropped off by Peter who then went in search of an elusive parking space. I walked into reception and didn't even have time to sit down before I was dragged out to be 'prepared'. I knew exactly what that meant, a needle. No matter how much I had promised myself that I would NOT be a baby, and that it would be quicker and easier for everyone if I just let them get on with it, I started to shake, sweat and feel rather sick.

Of course rather than just get on with it they make you sit there with the needle in plain sight while they reel off a load of questions. Why not stick the thing in first and ask the damned questions afterwards, or at least hide the damned thing. I was asked if I were pregnant, LMAO, at my age! I was then asked about any allergies I had, if I was claustrophobic and if I had any trouble with my back or kidneys. Not once was I asked whether I was on Warfarin, and I was panicking too much to realise. The moment had come and I mentioned my needle phobia to which I was told 'well the needle doesn't stay in there, it is only used to guide the plastic tube', somehow I think she missed the entire point but that's radiologists for you.

What my CT might show

To be fair she was very good and got the thing in first time and I didn't really feel anything more than I do when I have a blood test. She then removed the little white cap on the end of the canula to attach the syringe. Blood went everywhere. It was all over me, it was all over her and it was all over the CT table. She stemmed the flow, cleaned up and went back to her check list and then asked the Warfarin question. I was positioned on the bed/table thing and lay flat on my back with my arms above my head. Not the best position for someone who cannot breathe lying flat at the best of times. Even worse I was then instructed to hold my breath, breath all the way out and hold it again, over and over. Eventually they had enough and got me out, sat me up and gave me a glass of water. What I really needed was my oxygen and some valium, but you can't have everything. The plastic tube was removed and they were ready for me this time and instructed a burly, and quite attractive, nurse to stand there applying pressure for several minutes. He was really good at his job and not only did I stop bleeding but I lost all feeling in my fingers for a while too.

I emerged blinking into the sunlight, only twenty minutes after I went in, relieved and feeling rather optimistic. If I get the call tonight at least they will know what lies ahead. I won't be so happy though as it will mean more needles and I've had enough for one day.

After lunch at Burger King, a rare treat, we headed for Bedford town center, we decided against the Cambridge Colleges in the end, I just wasn't in the mood, and spent the day pottering. I came away with several books, I was so chuffed, and I spotted a mug I knew Andrew would love. The sun was out and it was lovely and warm and I just felt so happy and so well. These are the days I live for, the days when I feel almost normal.

Tomorrow we are off to get my car serviced. I'm hoping for another dry and sunny day. We will be driving down in two cars so we can go off and do something rather than just sit and wait. If the weather is nice we will try and find somewhere nearby we can visit.

Right now though I am shattered and all I really want to do is have something to eat, a cup of Earl Grey and change into my PJ's to watch Masterchef. Some times 'days don't get better than this!'

The Price of Charity

I went to Leighton Buzzard yesterday in my quest to find some books that would allow me to continue with a series or two that I'm half way through. It was almost a complete waste of time as I returned with just one book but at least having that one will allow me to read two others.

Today I woke up to, yep, you guessed it, rain. However I am not as downhearted about this as maybe I should be. It was raining right up until we left the house yesterday and it was glorious sunshine right through our afternoon out.

It was wonderful just to be out in the sunshine and breath in the fresh air. Being LB there was very little traffic about and very few shoppers so I had no problems getting around and no one walked into me, yay! However my trike did have to be lifted into a couple of shops because they had steps instead of slopes. Apart from that I really enjoyed browsing the shelves and once again was amazed at the things people give to charity. In one shop there was a box full of used knickers and odd socks. Ewww! However I was fascinated in another shop by a load of really ancient camera equipment. The were a couple of cameras of the type where you turn a type of starting handle to open the shutter, and at least five lenses of various sizes. I was so tempted to buy them, and would have done if they were in better condition, as collectors pieces. However they all looked as though they'd been kicked around the floor a few times and all the lenses had at least one visible scratch. In the end, with great reluctance I left them. At one or two pounds I would still be tempted but certainly not at ten pound a piece. No way!

I have to say I find charity shops getting a bit greedy these days. I have come across instances where I could actually get a new copy of a book I want from Amazon, with free postage, for half the price a charity shop wants for a battered used copy. Oxfam are the worst for this, followed by the British Heart Foundation. I know they need to make money but they don't seem to realise they will sell more with reasonable prices. If I wanted to spend ten pound on a book I'd go to Waterman's and buy a spanking brand new copy.

My trike drew quite a bit of interest with one man wanting to know absolutely everything about it as his wife was recovering from a stroke and, although perfectly able to walk, got tired very quickly. He said they'd hired regular scooters before but wanted something they could take on holiday with them. After Peter gave a quick demonstration of how it folded down I gave him one of the cards I carry with me with the website on it. He was immensely grateful. Unfortunately I also attracted some interest of a different type and was followed down the high street for a short while with a group of braying teenagers. They found my scooter hilarious and hurled a variety of obscenities at me for no other reason than I was different. Fortunately my discomfort was short lived as Peter appeared from a nearby shop and they legged it. How brave were they? All I can say is Karma.

This afternoon we are braving the streets of Bedford, or possibly Hitchin, we haven't decided yet, to continue with the quest for reading material.

There may not be a blog tomorrow as I'm off to Papworth in the morning to have a scan of my plumbing. As I could now end up with just a lung transplant it means that different machines will be used to keep me alive during the operation. This means they will be attached to different parts of the body and so the arteries in my groin and neck need to be checked out as a precaution. I'm told I should be in and out in under an hour but being a long standing hospital patient I have learned the hard way that one hour usually means two, or in some cases, three. I will be taking a book, some nibbles and change for the coffee machine and bedding in for a long wait. If we get out in time we are going into Cambridge itself for a tour of the colleges. Last time we went, we only looked from the outside as we were time limited. I've checked out the times they are open to the public and hopefully will be able to get around at least two.

There may also not be a blog on Thursday as my car is being taken in for servicing and we are going to be stuck in Watford for the day. Oh well, there are a lot of charity shops in Watford.

So next definite blog will be on Friday, wow! I can't believe my week off is going so quickly. 

Sleepy Sunday

All does not appear to be well in the Mercedes camp. After dominating the race, the Spanish Grand Prix was won by Lewis Hamilton. Unlike previous GP's instead of coming over and slapping his team mate on the back Rosberg just stalked off and the conversation in the holding area was stilted to say the very least. Hamilton, it seems, is very good at getting peoples backs up.

Why am I starting with the Grand Prix today, well it was about the only (semi) exciting thing that happened all day.

I woke up, read the papers etc, etc, etc and wondered when the weather would stop pretending to be November and act more like May. Honestly I was so cold I ended up huddled on the settee in one of Peter's enormous fleeces.

I had hoped to regale you with tales of gardening or going out to walk (scooter) around parks and alongside river banks, I had hoped to have used my camera outside at least once by now. It always happens to me. I take a week or so off and suddenly winter returns. It's all very well the weather people telling me next week is going to be better. I'm going to be back at work by then and sitting in a sweltering room trying not to faint.

Instead all I did yesterday was watch TV, drink endless cups of tea and roam the internet looking for somewhere to visit. I'm now thinking forget anywhere with nice gardens, look for something indoors with efficient heating.

However it was drug prep day and this time it went off a lot more smoothly. I'm getting used to things now and managed to knock a whole five minutes off the time this week. I do like it when a plan comes together. It still feels strange not to be sitting down and doing this every night as I used to and I can't believe I actually moaned afterwards at how long it had taken, but I did. How quickly we forget! Two weeks in and I cannot imagine ever going back to the old system but I'm already complaining about the new one. Guess I won't really be content until I've got rid of the pump for ever and there is only one way that is going to happen.

The fresh flush of renewed hope has faded as quickly as it arrived. That's the trouble with this transplant business. When you are first put on the list you are absolutely convinced you'll be all done and dusted in a couple of months, six at most. Part of this is the fault of the nursing staff who say stupid things like 'I'll make you an appointment for three months time but I fully expect to see you before then'. And in my case the hope was elevated by working alongside someone who got their transplant after being on the list for only three months. Of course they point out to you that you may be in for a very long wait and also that there is a slim chance you will never get a transplant but human nature and that wretched thing called 'hope' brushes those warnings aside. You just know it's going to happen and it's going to happen soon.

So after becoming very despondent, and knowing your condition is worsened, when the top consultant comes along and says you have now become urgent, and they are taking some of the barriers away, you are suddenly filled with renewed hope and excitement. However reality has taught a painful lesson and hope fades very quickly and you stop jumping when the phone goes and no longer fret if you are in an area without a phone signal. You actually manage to convince yourself that it is not going to happen, ever. For me this makes life more bearable and allows me to get on with enjoying the things I can do without constant disappointment.

Gosh, sorry! I got a bit maudlin there, must be the weather.

Today I am going to wrap up warm and do a trawl of the local charity shops. I'm not exactly short of books but I have several series on the go that need the next in line before I can read the ones I already have. It may not be a country house and it may not be exciting but it gets me out of the house for a while. If I'm feeling flush I might even treat us both to a Costa coffee.

It seems my picture recipes are going down well so I may do that again sometime. I must say it was fun doing it too, even though Andrew moaned that I was taking too longer to serve up because I was 'messing around with your camera'. Tisk! No one appreciates an artist.