Wednesday, November 26, 2008

Please take a look at the latest LLTGL blog.

Find it inspirational? Please email/send link to as many of your friends and work colleagues as you can in the hope they'll click on the link at the end of the post and sign the Organ Donor Register.

Big Thank You to Sarah and Peter who let us use their story to inspire others.

ps - I'm fine. I'm talking LLTGL stuff, rather than about me so it has to be a good sign!

Monday, November 24, 2008

I was thoroughly unimpressed by now. I had had a reading that had been ridiculously high much earlier in the year, had a re-test, and then it was fine. I explained this to them and was told that one of the SHOs was coming to talk to me. She arrived and I asked jokingly if she’d come to give me good news and she replied cautiously “I’ve come to talk to you.” She went on to explain that the un-recordable reading (which I’d automatically assumed was too high) was actually far too low. That it showed hardly any presence of Cyclosporin in my blood. She looked at me, somewhat nervously and said as firmly as she could “we need to know if you have stopped taking your medication.”

What I should have been able to do is casually laugh and gently reassure her that there’s no way I’d ever be that stupid but I was so shocked that my stomach flipped and I felt tears gathering in my eyes. I couldn’t believe they would think that of me. She went on to say that obviously they hoped this was highly unlikely but a sudden drop in lung function coupled with these blood results did begin to look suspicious.

Just to reassure anyone who may have any doubts, I would never ever stop taking my immunosuppressants. They are keeping me alive. They are keeping these lungs healthy. A handful of tablets morning and evening are allowing me to live a normal life. To stop taking them would be suicide.

I started babbling, feeling like I needed to prove myself to this doctor, who was very kind but didn’t know me at all. She explained that if I did have no cyclosporin in my blood they’d put me on an infusion straight away to get the levels back up. This helped clear my mind a bit – I knew there was no way the blood test could be correct and whatever the evidence might suggest it was not true. As she went to discuss it with another doctor, I phoned A tearfully, just to check that he hadn’t notice me miss any doses either. He reassured me that I know I haven’t and I got myself together and went to speak to the doctor.

I told her again that I’d never do that and due to the fact the level was so low (suggesting I’d stopped taking them for some period of time) I was convinced this was a dud reading so I would refuse the infusion for fear of further damage to my kidneys if they did suggest it. Luckily she said the other doctor had agreed that if I said I hadn’t stopped they couldn’t believe I’d ever do that either and it was suggested I return for a repeat blood test early the next morning.

This was all I needed to hear – they didn’t believe I’d ever treat my new lungs with that contempt. I was so relieved. I ran out of the hospital (forgetting to collect the inhaler in my haste) before anyone could change their minds and headed home for a good nights sleep. The next morning I whizzed back up bright and early, had the bloods (which they rushed through so I could go again if it was fine which I thought was lovely) and sure enough around 9am was told the level was absolutely fine.

I have no problems at all with the way the hospital dealt with this – I think they were cautious and thorough. If I was a doctor greeted with reduced lung function + no cyclosporin in blood level I’d have to come to that conclusion as a possibility too. Every move they made was for the safety of me and my lungs. As for the initial result (which must have been a dud reading) I’m just glad that it’s all ok now and mix ups must happen in the labs sometimes so no one is to blame.

As I say it was a strange few days. The inhaler has been fantastic and my lung func is nearly back to normal. My cold is also well on its way out. It’s not long till Christmas now (wooo!) and hopefully that will be the end of my mini-drama and I can focus on work and on festive preparations. Now if you want to read a real thriller of a story, take a look at Sarah’s blog, where she is detailing the incredible events in the run up to William’s Transplant.

Thanks again for all your lovely wishes and big yay for being at home.

Saturday, November 22, 2008

That was the end of my hospitalised blogging as things moved quite quickly after that. Good old Dr C (my fab consultant who tells it like it is, doesn’t take any nonsense and is extremely key in me still being here today) came round to have a chat. He explained why they’d pulled me in so fast; a drop the size of mine in 24 hours needs checking straight away. He told me not to be fooled by the “just a cold” scenario (which is a shame as that’d been my mantra since admission) as whilst hopefully colds would be “just colds” they could actually cause three far more serious problems:

1.Pneumocystis – which is where the infection actually gets into the lung tissue rather than into the airways (no thank you)
2.Acute rejection – I’ve not talked much about rejection so I should really explain a bit more here. There are two types. Acute, is a sudden onset rejection often characterised by a sudden drop in lung function, temperatures, a drop in oxygen saturations or all of the above. It is very common (most people have at least one episode in their first year) and is reversible but it’s vital that it’s caught quickly so they can change appropriate meds and treat it swiftly and effectively.
3.Chronic rejection – this is the other type and is a slower acting more long term form of rejection. It causes a progressive decline in lung function and reminds me a little of CF really. It is non-reversable although treatments can slow and sometimes halt progression.

They were looking for either one or two in me however a cold that settles on the chest and left unchecked could eventually be responsible for triggering three. A slightly scary talk yes but important as of course I feel so normal. And I am normal, it’s just I am normal as we (the hospital my family my friends and I) are meticulous about ensuring nothing occurs to jeopardise that. I must admit I’d never really considered a cold could cause me much harm post transplant so I am very glad that I am now much more aware of what to look out for.

It hasn’t really scared me though as I’ve had about 3 colds since transplant and this is the first one to go onto my chest, and even this one (by the looks of it) isn’t going any further.

Anyway so after all that, it was decided that I didn’t need a bronch, my lung func that morning had gone up slightly and a very audible wheeze could be heard but with no evidence on a CT suggested mild cold related inflammation. I was given an inhaler (ah my purple inhaler – I’ve sort of missed you for the last 21 months) just to help me over the next few weeks till this cold has shifted. Under strict instructions to ring if anything changes, I was told I could go home.

Just as I was packing up my stuff and chatting to a friend who’d come to visit her husband, the nurse appeared nervously round the corner, holding the curtain in front of her saying this was her protection. “Your Cyclosporin results have just come back...they are unrecordable. I’ve been instructed to chain you to the bed. You can’t go home.”

To be continued...

Friday, November 21, 2008

So yesterday's (posted) blog was written when I was in hosp on the Tuesday and had no internet (by the way I am out now and these are being posted retrospectively).

And here's Wednesday's blog.

“Good morning, sleep well?” asked a gentle cheery voice peering round the curtain. I answered sleepily in the affirmative and automatically held out my arm for a blood pressure cuff and sats probe; clearly being in hospital is like riding a bike. Perfect sats, BP and temp (hurrah) left me feeling positive, even when told I am now nil by mouth as if they still cannot locate the problem they will do a bronchoscopy at lunchtime.

I am on the 2nd floor so upon opening my curtains I am greeted to a lightly frosted spread of fields and trees, with golden sun-painted tips. The blue sky and early morning sunshine create a breathtaking view so I stand by the window, drinking it all in.

“Lovely isn’t it?” says a voice and I turn to see (let’s call her) S, a lady a few beds down, who has laboriously made it back from the bathroom, oxygen cylinder in tow. She’s in for her assessment and tells me she is worried she will not be accepted onto the list as she is over 60. It’s hard to answer to that so I tell her my honest feeling; that what they look for as well as age is determination and she clearly demonstrates this. But we are both aware that her age and frailty combined with the huge lack of donors and the number of young people waiting may well count against her. We chat a little, pausing regularly for her to draw breath and for me to stare out of the window.

Her emotional journey so reflects my own; your world becomes smaller, everything is a mammoth begins to feel that you are existing rather than living. Only I didn’t have that fear that I wouldn’t be accepted onto the list. Well nothing is certain, so I knew there was a slim chance there could be a problem, but there were no evident factors which could cause an issue therefore my chances of making it on were fairly good.

I like S instantly, her warmth and openness is very apparent, and I am hoping very much that her body is strong enough and that the doctors will see a determination in her which allows them to put her forward for transplantation. She wanders back to her bed as a nurse approaches me to give me a huge hug – she’s just worked out that I am me with a new surname and has come to congratulate me.

I am feeling extremely happy and content this morning – two things which I definitely did not expect to be feeling right now. Sometimes something like an admission to hospital makes you stop and re-assess, and the most wonderful thing is that I am sitting here wishing I was back home and back at work. How lucky am I to love my job so much? To be so happy? It’s a nice thing to be missing these things and it reminds me how special they are to me.

As I am nil by mouth (the joys) my Lung Function Tests and CT scan are done and completed very quickly. If the CT results show anything, I'm heading down for a bronchoscopy. The phlebotomist arrives and takes more blood. Time to sit and wait. Thank goodness I have this computer.

To be continued...

Thursday, November 20, 2008

An interesting couple of days would probably be the best way of summing up the beginning of this week....

Some of you probably saw me on This Morning (thanks for all the feedback and messages as always). In case you couldn't tell, I had a horrific head cold that had just set in that day. Which triggered off a whole set of events....

Here is a blog written Tuesday afternoon.

So this is surreal...

Yesterday my lung function dropped. Due to the fact a stinking cold was attacking me with early-stage vigour (plus the fact that I was rather busy) I decided to let said cold die down a bit and see what the results said today.

Today they were exactly the same. As it was a rather significant drop I phoned Harefield who, to my surprise and annoyance, requested I come up straight away. I did as I was told (I’m so good) and the result is that it is now 6.30 in the evening, and I am sitting on a ward with hospital wristbands scratching the keyboard as I type, feeling a tad sulky at the fact that I have been denied bail.

I can’t really complain – after all it is a big drop and the fact they are so incredibly proactive and aggressive in their treatment of anything suspect is very good news indeed for me. I am just being a tad petulant as, well, I’m busy. When I used to go into hospital it was part of my regime (pretty much a monthly occurrence) but now my week is full of stuff and suddenly I am feeling nervous at the prospect of having to put off said stuff and how to explain my absence. Suddenly I am “normal” and everyone views me as such, therefore announcing I’ve been taken into hospital may cause shock and worry, rather than “oh no not again” followed by purchases of standard sweet supply for hospital stays.

Filling in her paperwork, the SHO asked “when were you last admitted for treatment” and I surprised myself as I found myself answering “January 2007, for my transplant.”
After filling in a mountain of forms (nurses have been given what appears to be an entire new book to fill out on admission – just what they need; more paperwork to keep them from looking after their patients...) I lay back on my bed, pressing the little green arrow on the control pad to raise my head. The sensation and the noise took me sharply back to my lengthy recovery, and spending week after week staring at the ceiling, watching people walk in and out of my vision, coming and going whilst I remained static.

It’s oddly unsettling to realise that you’ve become so used to being well and being away from hospitals that the memory of when you were part of that world seems more like a memory of a film clip than one of your own lifetime.

One of the strangest things is that I don’t have a clue what is going on. The team are being fantastic (as always) and explaining everything, but when I was admitted with my old lungs I knew pretty much what was causing the issue, what they would look for, what they would do and how my recovery would go. This is all brand new and very strange – I feel daft asking questions about what will lie ahead tomorrow but I am so used to knowing it feels uncomfortable being in the dark.

To be continued...

Saturday, November 15, 2008

So Gordon Brown's Opt Out proposal has been turned down by the Organ Donor Task Force.

Interestingly, I am neither surprised nor bothered by this result.

Opt-out seems in theory like the perfect solution, but after a couple of years of delving much deeper into transplantation and organ donation it's become clear that actually it is far from the definitive answer.

The issue of opt out is a very complex one, with so many factors it is actually difficult to see what kind of affect a law like that would actually have on organ donation rates.

Emmie (as always) explains things much better than I do on our intoto forum:

I have to say that the decision didn't come as too much of a surprise to me as I had been getting the vibes for some time that the taskforce was unlikely to come out in favour of legislative change. I don't believe its a huge blow however and I think that much more important steps are being taken to improve donation and transplant rates thanks to the government's acceptance in full of the task force's recommendations that came out in January. Thess aim to increase organ donation rates by 50% over the next 5 years and is based on the success of the Spanish system of organ donation. Contrary to what the media may be saying, Spain has the highest donor rates in the world because of its system not because of its presumed consent laws (and this is backed up by the man who set up their system).

Even if we had gone for an Opt-Out system of consent, families would still need to support their loved one's organs being donated in order for it to proceed so the key would still be education, awareness and understanding just as it is now. And there would have been the danger of a backlash against the system with people removing themselves from the list in order to make a point. To my mind the most important thing is that plans are already being carried out to change the UK's organ donor crisis and I think that this change is long overdue.

I am not against opt-out, and it bugs me when people start ranting about "choices being made for them" (surely if that's the case the choice is currently being made for them not to donate!?) but I personally do feel now would not have been the right time to bring in opt-out: people are not ready for it, there is too much confusion, too many myths, and too little education, all of which must be tackled first.

I was on LBC yesterday talking about it all and it looks like I will be on This Morning and on ITV lunchtime news on Monday....will keep you posted.

I am off to a LLTGL Meeting today and very excited about seeing everyone and doing looooads of work. WOO!

Wednesday, November 12, 2008

I've been thinking a lot about death recently.

That got you sitting up and paying attention didn't it ;)

In all seriousness, I have been thinking a lot about it but not my death, just death in general. And in a negative or depressed way, a genuine interest in our (the UK's) psychological approach to death and dying. Honest.

I think we (society) actually have an unhealthy viewpoint about death. I mean obviously no one wants to die and so fear of death is natural. But a fear of talking about death? I think is taking things a bit too far.

You can probably see where I’m going with this now. I wonder how much of our attitude towards death has a knock-on affect on the lack of people on the organ donor register? The next logical comparison I can think of would be a will – who has actually made a will? Come on hands up...I suspect most who have, have either done so because a) they’ve been made to face up to their own mortality (like me) or b) have a dependant which means suddenly it becomes a practical necessity therefore easier to tackle than when it’s merely an emotional concept.

I went to a fascinating lecture when I attended the Manchester study day on transplantation. It was all about death and dying; how we view it, how our preconceptions of death may have an impact on organ donation and on how those approached view the scenario in front of their eyes. Ask a child what a dead person looks like and they will probably stick their tongue out and roll their eyes upwards. How much of that childish notion remains and interferes with what a potential donor family might see in front of them?

How much of our negative viewpoint about death has a knock-on affect on our viewpoint of organ donation? Clearly death is never going to be a positive thing but I’m wondering if other cultures who have different perspectives on the whole life/death cycle would view organ donation differently?

I believe our reluctance to talk about it and face up to it has a negative impact on people when they are forced to. There is no preparation, very little support, and an unwritten rule that you shouldn’t talk about it as you’ll “bring people down”. What about young people who are facing their own death? Where do they go to talk? I had a talk with a nurse at the hospital which will remain with me forever as it was the first time anyone had answered my questions (which I felt terribly guilty for even wanting to know) about dying and had talked openly about it without flinching. It made things far less scary for me as suddenly I felt I wasn’t on my own, facing the unmentionable.

Every now and then I get vaguely concerned at how interesting I find all this but I think as long as I am able to keep it as an interest on an academic level (trust me, I am very much alive and living it up) then I’m allowed to find it fascinating...aren’t I?

It’s one of those blogs where I ask more questions than I answer. Nevermind. I would love your input on this, and to know how uncomfortable it made you reading this post.

And now I’ll get back to doing some more living.

Thursday, November 06, 2008


Holly won Battlefront!

We're all absolutely thrilled for her; she worked so hard campaigning and totally deserves this. As she still has one v new (and apparently lazy) kidney I am helping out a bit (gulp) but all credit goes to Hols for being a star and shining so bright the judges had no option but to pick her as the best campaigner.

Hols, we're all so proud of you and behind you every step of the way xx

ps - forgot to say (most importantly) YOU can help! Just go to Holly's battlefront page to find out how to promote her campaign on blogger, bebo, facebook, myspace etc...

Thanks muchly x

Monday, November 03, 2008

A year ago today...

I cannot believe the most magical and wonderful first year has flown by so fast...I am so lucky.