Sorry for the long delay between posts yet again...

You can always tell when life is going well as I am around less to write long waffle, so yet again do take it as a good sign :)

On Friday 6th, Oli and I went and spoke at a day organised by Harefield for Transplant professionals. It was a fascinating day (I attended some of the other talks) and it was wonderful to get to see so many members of the Transplant team that I don't really come into contact with any more. One of the weirdest moments was sitting on a chair having a cup of tea during one of the breaks when two of my transplant surgeons came and stood either side of me; the last time I was looking up at their faces together was when I was in ICU fully ventilated so it was a very bizarre feeling!

Things have been pretty manic really; I mentioned below, we had a busy but wonderful day on Saturday with a LLTGL meeting. I have a huge work thing coming up; my choir, which I started up in a local High school back in September won a competition at Christmas and consequently have a rather large concert coming up. They are working so very very hard but it's a huge mountain of a challenge and most of my time is going into preparation for it at the moment. At some point I think I'm supposed to be fitting a birthday in this week.

On Monday I was back up at Harefield for a checkup and I'm pleased to say it was shiny gold stars all round (whoop whoop). Sats monitor bleeped merrily at 100%, lung function is STILL creeping up, kidney levels were much better, in fact so much so that I was allowed to bipass Mr Kidneyman and head straight home! A glowing report and a fond "don't come back anytime soon" to send me on my way. Couldn't ask for any more than that really could I. I cannot explain how wonderful it is to be so busy and to still be well. I don't think that will ever stop being a novelty.

I shall try and write again a bit sooner but for now here's a picture of my mother demonstrating her delight at her favourite birthday present; memotoast - a plastic toaster which pops up toast-shaped memos for you to write notes on. Clearly nothing like my calm and mature self.

I was at a LLTGL meeting all day today. It went really well and was so fantastic to see everyone and catch up; I do love what I do and the fantastic people I get to know through doing it.

But here's a serious reminder of why we all do what we do and why we are constantly asking for support and help in spreading the word.


A day in the life of Jessica Wales

wooaaah, where did the last week go?!

So yes, Mauritius. It was incredible. It's somewhere I have been wanting to go for a very very long time and to be honest I never thought I'd manage to get there. To say it lived up to my expectations would be an understatement.

The last picture incidentally is me doing something called Deep Sea Walking. The space helmet traps air in so you just breathe normally, and there is an oxygen tube coming through the side which keeps you topped up with fresh O2. I opted for this rather than scuba diving as when I had been snorkelling last summer I got very nervous at the sensation of breathing through the snorkell as it reminded me of my trachi. I didn't want to pay for a scuba session and then find I was too scared to go through with it, so this seemed like the perfect option :)

One of the nicest things about coming home was how much I was looking forward to going back to work. It's such a wonderful feeling to want to get back to a job that I love....I'm a very lucky girl.

I am off to do a talk at Harefield tomorrow with Oli; I am quite nervous which is daft, but only because the people who actually physically saved my life by caring for me pre and post transplant (and the surgeon who did my op) will be present so I want it to be good! It's so weird to think that if it wasn't for two people we will never meet, neither Oli nor I would be here now.

And lastly a quick plea: Holly Shaw, a LLTGL Advocate and a very good friend has been going for Gold in her Battlefront campaign. She is holding a Donor day on 7th April and there are lots of ways you can support her in this, wherever you are. To find out more pop over to her website and say hello. Thanks muchly all.

Sorry for the rather large delay in posting but I do have a good reason...

Mauritius.

Normal Service will be resumed shortly. Once I've come back down to earth.

Reading this blog is bringing tears of joy to my eyes at the moment.

So very happy for them.

Thank you so much for all your feedback and opinions on the comment posted by “Dave.” As promised, here are my opinions and the reasons behind them.

The idea of LifeSharers – the business which was promoted in this comment section here is an American organization which effectively asks people to sign up as members of a group which wants to only donate their organs to fellow LifeSharers. Their reasoning is that this way, people who are signed up on the ODR will be prioritized, which according to them is the way it should be.

It’s a very interesting theory. Basically utilizing a principle of exclusion - “if you don’t then I won’t help you” attitude rather than leading by example.

I can see the idea behind it. The desperation which those waiting for transplant feel when thinking “if you needed this transplant you’d sure as hell be more proactive about carrying a card” but the iea and the reality are extremely different and this principle is not workable in real life.

LifeSharers claims “There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die... Giving organs first to organ donors will convince more people to register as organ donors.”

This doesn’t really make any sense. The only way that would happen is if the law was changed to say that you could only receive an organ if registered as a donor. Which is not the case; this instead is a small group of already pro-organ donation people who have agreed to prioritize each other, not a national movement which will cause a shift in mentality.

The group claims “It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.”

Again, I do see where they are coming from. That frustration and anger definitely hit me when I was waiting; knowing that people who would shun the idea of signing up giving something like squeamishness as a reason would have the same priority as me, but that was merely a desperation to survive, fear of not making it. In reality, I feel Organ Donation has to remain a freely given gift. The minute you start attaching conditions it becomes something else.

Other than any ethical issues, the system itself is simply not workable. Emma and Jac in particular have made some great observations on this on the comments section; do have a look at all comments if you can. You might find it hard to believe that some people don’t know how to register or even understand what organ donation is, but every time I do another talk, I meet people that don’t fully understand it all, even though if they sat down and thought about it and knew what to do, they’d probably be willing to donate.

Some of the comments on this very blog have exposed myths still believed within the transplant community. Just to clear those up now: anyone can sign up as a donor – it’s up to the medical team to decide whether the organs are viable. It is not helpful not to sign up because you suspect your organs would not be useable. All the major religions support organ donation. Those infected with HIV cannot be organ donors.

Organ donation is so complex, with so many issues and questions, myths and facts, that if we cannot clearly define it how can we judge people who have not had any personal experience and assume they know enough to be signed up or to miss out?

And on a more emotional level, I just don’t like the idea of it. I find it somewhat spiteful and selfish, and completely contradictory to everything that, to me, organ donation represents; giving, selflessness, bravery, generosity…a gift.

Do keep the feedback coming if you still have opinions on this one; I find it all very interesting indeed.

Click on the comments page of the below post and read the comment, sorry, advertisment by "Dave"

Very interested on your opinions on this "solution" to the problem of organ shortages.

Ready....steady....debate!

So I went to see Seven pounds at the weekend.

I haven’t blogged about it yet as I wanted to let it all settle first. I did actually wake up that night thinking about it. If you haven’t seen the film but want to, don’t read the rest of this post as it contains spoilers.

The premise is that the main character (Will Smith) wants to set out to help seven strangers. Organ Donation is the overriding theme of the film. Rather than lay out the storyline I’m just going to assume readers have seen it and talk about my reactions to it.

Firstly I must state; it is not a perfect film. There are inaccuracies, twee parts, unnecessary elements and errors from a person-who-studied-film-at-uni perspective. However my main interest (and reason for going to see it) was to see the handling of the organ donation content.

The main female character Emily had the most impact on me. Same name only highlighted further the similar circumstances she portrayed, and I found her convincing to the point of feeling my toes curl when certain gasps of breath or looks of fatigue took me sharply back to my past.The film is one filled with sadness and pain. Organ Donation, whilst the predominant thread, is not the only subject matter here; psychological issues and coping with loss and guilt are also explored.

But back to Organ Donation. Overall I think it was handled well as a subject. It was taken for granted that the viewer comprehended the severity of the donor shortage but I think the lack of weighty facts made it stronger by making it less preachy. Emily’s predicament was striking and could only really create a feeling of empathy and sadness from anyone watching.

I'd probably say that from my perspective, the best bit about it was the insight given into Emily’s ordeal. Because of this I think a great many people have been given an insight into life on the list; not a wholly accurate one, but a good one nevertheless.As I say, the film is a sad one, and by the end I couldn’t stop the tears streaming down my face. Part of that was due to the plot and where it was going, part of it was reliving extracts from my past as they were played out on the screen. It made me think a great deal about my donor and their family. A lot of my sobs were for them.

I’m glad I went to see it, I’m glad it was made, and I’m very glad Will Smith took the role as it has heightened the Film’s profile a great deal. But I found it so very emotional...I don’t think I could watch it again anytime soon.

Snow.

Glorious, wonderful, exciting, childish snow.

It started on Sunday night, with a thin sprinkling settling by the time I was leaving my parents house.

Waking up on Monday morning and looking out of the window made me feel as if I was five again. The overwhelming joy at seeing almost knee-deep snow was ridiculous. Obviously as A and I are mature adults, we built a snowbear before walking/sliding to the local park to join my family, where my even more mature parents were sledging down the hillside.

As I was carefully forming the muzzle of our snowbear it struck me - as it often does at random times - how I might never have seen this day, and how my family might have been laughing and hurtling themselves down the hillside without me. But I'm here and had the most fantastic time, and tried to make the very most out of it that I possibly could. For my donor as well as for me.



It really was a wonderful day.

I'm on Twitter now.

So far, I've managed to add myself so I am following me. Twice. No one is quite sure how, and so I am obscurely proud of my technical (in)capabilities.

On other far more important news, this is Ethan.

How gorgeous is he? He has never left hospital. Ever. His mummy and daddy have never been able to take him home. That to me is sad enough. Sadder though is without a new liver and small bowel, Ethan doesn't have long left.

His facebook group has over 47,000 members. I very much hope they have all signed up to the Organ Donor Register.

His dad has decided that he needs a challenge to focus on, and along with some family members and friends, will be running the Great Manchester Run to raise money for LLTGL.

It's pretty humbling really. I really really hope his call comes soon. If you can, please show them your support.

Ethan is another person to add to my "please please please let their call come soon" wish list. Emmie is off on holiday again soon and so the jokes have already started as she is infamous for her disappearance from the country resulting in someone getting called for transplant. Amongst the humour there is a sad note; people laugh that someone should get called in that time but who should it be? Who is "most deserving?" the person who has been waiting longest? The person who has struggled the most recently? What about someone perhaps who has a child? Perhaps it is a child.

The answer of course is that everyone who is waiting deserves and needs that chance. Of course there's no priority of need. But I remember how hard it makes it when waiting and having friends who are also waiting. You want it for them....but you want it for yourself more. For any of you who are waiting who have felt that, please know it's natural and there's nothing wrong with those feelings. It's a survival instinct.

Life for me is good. Better than good. Much better than good. I just hope that we can continue making it better for those out there waiting.

15 Top Tips for Lung Swop Op-ers

(An idea openly stolen from fellow blogger golightly)

1. Everyone tells you to make sure your case is packed for transplant. What they forget to tell you is make sure your family have cases packed too. I happily unconscious in a hospital gown whilst they telephoned various friends in an effort to gain clean clothes before they were asked to leave for hygiene purposes.

2. Waiting is hard. The hardest bit for me was feeling I couldn’t go on and realizing I had no choice; you just have to sit it out. But you’re stronger than you think and you can do it.

3. Start telling the truth. I mean when your friends ask “how are you?” instead of the automatic “I’m fine thanks” maybe tell them a few of the things going on in your head. Some people genuinely want to know, and those people are invaluable in your mission to stay sane.

4. Change your goals. So maybe you can’t do the big stuff anymore. Maybe your new goal is that next weekend you are going to leave the house and visit a relative you haven’t seen in a while. Maybe it’s to read a certain book. Small and flexible goals are so important to keep you pushing forwards.

5. It’s not over till it’s over.

6. Accept help. To me staying independent meant doing what I wanted to do for as long as possible. If that meant using a wheelchair, a carer and various other contraptions then so be it. Strength is knowing when to ask for support, not struggling on vainly without it.

7. False alarms are a hugely emotional experience. But can be positive; you know what the real thing will be like now, and are better prepared. It’s probably acceptable to buy yourself a frivolous and unnecessary treat following though.

8. After your transplant you will have to work harder than you have ever worked before. But it is worth it, a thousand and one times over.

9. When you wake up and panic that it is still hard work to breathe, do try to remember…they just cut you open and stuck brand new lungs in. Which will delay that feeling of “woooo I can breathe!” somewhat.

10. Two steps forwards one step back. Sometimes about 5 steps back. No matter how many times they tell you this is normal you won’t believe it. And no matter how much you don’t believe it it’s still true. The road to recovery is rocky and just because you have setbacks doesn’t mean you’re not doing well.

11. Oxygen tubing is less effective at delivering flow when the bedside table has rolled onto it. Same applies to suction power of chest drain tubing.

12. Hospitals are fantastic places full of people who work tirelessly to save lives. However they have hundreds of patients and there’s only one of you. Sometimes you need to speak up to make sure your voice is heard.

13. A huge amount of patients (including myself) struggle with negative emotions after the op. Don’t suffer it alone, don’t feel guilty and try to force yourself to be happy; get help.

14. Nebuliser machines are also fantastic for blowing up beach balls, lilos and other inflatable items.

15. Someone once told me your old life as a chronically sick person kaleidoscopes down so fast, you almost forget what it was like to be that ill. I didn’t believe him...it turns out he was spot on.

Dear Gaz,

I can't believe it's already been 4 years today since you left us. Where has the time gone? You were my first really close friend who was a CFer, and to be honest the first person who truly appreciated my stripy socks as much as I did.

I still think about you lots. Mini-Gaz and Mini-Em are sitting at the top of my wardobe! Mini-Em's hair grows more and more inexplicable as time goes on. You are mentioned at the bottom of the LLTGL website as our inspiration and drive to get on and launch those T-shirts.

I often try and imagine what you'd be doing now, I suspect the web would play a key role in your job! You were so good at web stuff, it's only now I look back and realise how poorly you were at the time that I see what an incredible achievement pwcf.net was.

I still miss you an awful lot. I still get sad when I think that we could still be having those chats and giggles....if you had got your transplant in time. Not much else to say really, except that I miss you. And you continue to inspire me to live my life as best I can and to continue raising awareness and hopefully saving lives. xx

Today is a very special friend's birthday.



Happy Birthday Emmie; I hope you are feeling better and enjoy your day!

lots of love xxxxx

It's been a tough 24 hours.

A friend of mine got his call for Transplant back in September. He had a complicated recovery (didn't alarm me due to my history) and I grew quite close to his partner, chatting to her as often as possible and spending the day with her when I was up for Clinic.

New complications sprang up a few weeks ago - septicaemia and infection in the lungs. With confidence I reminded his partner that I'd taken a very similar track indeed, and a few weeks later after scaring my family (and the team) to pieces, I was back on the mend.

Naive confidence perhaps, as yesterday I got the horribly sad news that he hadn't made it.

This tragedy is not about me in any way shape or form, but this blog is so I'm going to be self-centred on it as is my privilege as the author.

The mixture of emotions swimming round is immense. I have grown pretty close to his lovely partner and imagining what she is going through breaks my heart. It reminds me how lucky A and I are to have celebrated our first wedding anniversary in November. How lucky my family and I are to have celebrated a busy, noisy, rowdy Christmas together. How lucky I am to have just marked my 2nd year anniversary with my new lungs.

And of course, that feeling which always accompanies the loss of someone in a similar position; survivors guilt. The futile but natural ponderings on why I survived and he didn’t. There’s no rhyme or reason, I’m fully aware of that, but it doesn’t stop the questions.

Being a transplant survivor and campaigner, I am self-conditioned to put my faith into transplantation being the answer. Of course it is the answer, well the only possible one, for people such as myself who will otherwise die. But that doesn’t make it foolproof. Transplantation is a risky business; it’s a complex procedure which is why it’s only used when all other avenues have been exhausted. But it offers a hope; the chance of a new chapter with renewed health.

It’s a strange and helpless place I find myself in. When I lose a friend pre-transplant, my answer is to throw myself even harder into campaigning and raising awareness. But this was sadly a transplant which was not a success. A rare but devastatingly hard scenario to face.

In amongst my self-wallowings, my thoughts are with his family, his friends, and his gorgeous wife. And all my warmest wishes go to them during this very sad time.

ER.

Does anyone watch it? I used to be a huge fan (admittedly predominantly driven by my desire to be treated by Dr Kovac) but I haven't watched it for a while. Just a warning, if you are hoping to catch up on last night's episode, don't read the rest of this blog.

Flicking through the channels last night, I noticed the new series was starting. Not just the new series, the very last ER series. I figured I'd watch it, ER like most TV dramas is fairly easy to catch up on, even after a prolonged period of absence.

An ambulance had crashed, or exploded, or spontaneously combusted or something, and two of the lead characters (Abbie Lockheart and Dr Pratt for any followers) were on board. Both appeared to have minor injuries and were taken to the hospital where it was discovered Pratts were more extensive.

Pratt's brother (this is an assumption based on dialogue as I didn't recognise the character) was present whilst the doctors worked hard battling various complications that arose. Once he was stablised and on bipass, a different doctor came in to do some tests on his brain which revealed no cerebral activity.

Dr Smoulderingbutpainedlooking took Pratt's brother aside and told him that in his wallet, Pratt carried a donor card. His brother through gritted teeth answered "he's not dead yet" but agreed that should it come to that he would give consent.

Several hours passed (apparently) and the brain stem tests were repeated. The team explained to the brother that there was no activity, that there hadn't been for 4 hours and that the bipass was doing all the work of his heart which was also gone.

So far I know this is sounding like a pretty typical TV drama (well it is) but there were a few key elements that really struck me. There were a lot of close ups on the character throughout, and he looked very much alive, just like he was sleeping. There was no screaming from those around, no spurting blood and machines going off, it was all very peaceful and he looked...stable. This is, in my opinion, one of the biggest hurdles in Organ Donation, where you are being told someone has gone but your eyes are telling you something completely different.

The team then explained that he would be taken to theatre on the bipass machine to preserve the organs. They wheeled him slowly through the corridors, with members of staff gazing sorrowfully in typical TV drama style. By this time, I was sobbing, not just the odd tear, those huge noisy ugly sobs that rip right up from your chest. Some of it was to do with the fact that I cry at most things on TV (thank you mother for that gene) but there was a bigger part of me which hurt for all families who have had to go through that, who have made that decision and who have been so very brave.

I felt on the whole it was a good portrayal; the organ donation bit didn't actually dominate the storyline; it was a big part, but was made to seem like the norm, the right thing to do, no matter how hard. Also, this wasn't just a one-episode character who made an appearance to be an organ donor and then was never heard of again, this was a main character, a character who many viewers will have watched develop over the years.

A long blog about an episode of a TV drama. Hmm. But I had to talk about it as it did affect me quite deeply. TV can do that kind of thing you know.

edit - apparently you can watch the episode on catchup here.

Happy New Year!
I hope everyone had a fantastic and sparkly Christmas - mine was wonderful and consisted predominantly of family, food and a great deal of fun.

I caught another cold (4th this winter) in the run up to Christmas and it really hit me hard – one of the reasons I went so quiet. Dutifully, I headed up to Harefield to be checked out and was horrified when they mentioned the words “acute infection” and “IVs” to me. Looking back it was a pathetically over the top internal reaction – as a CFer I used to have IVs all the time and there are hundreds of pwcf out there who still have IVs all the time and don’t bat an eyelid...but it’s true what I was told pre-transplant; you get used to being “normal” ever so quickly.

Anyway. They gave me some orals and I am to go back on Monday. But the great news is the Temperatures have stopped as have the other horrid symptoms and I am fairly confident that I will be sent away IV-free. Lung function remained pretty much stable which is obviously the most reassuring sign.

Feeling so ill this side of transplant hit me in a variety of ways. Firstly, I panicked as I am not used to being ill now I am well (comprehend that sentence if you can). Secondly and more horribly, I was able to remember properly for the first time since transplant how it used to be. Now I’m so well, it’s very hard to take my mind back to life pre-tx as my entire body feels different and memory relies on sensations and feelings as well. But I was transported back to lying in bed all the time and it shook me quite a bit mentally (am still randomly welling up/crying at the smallest thing, most amusing example being when I was telling my mum about crying that morning I cried remembering how I cried. Hmm.)

Now I’m feeling much better the strangest feeling left is one of guilt; I feel like compared to my old CF-state (and to many of my CF friends) I had no right to get in a state or to moan as much as I did…I’ve put up with worse and others are still putting up with worse. But then I was scared; I was told it was an acute infection and that can cause rejection….but then once the antibiotics kicked in within two days I was feeling so much better. It made me feel fraudulent as before it would take me weeks if not months to recover. Does that mean it was less valid? I’m unsure, but just very glad these orals seem to have worked.

Nearly two years on (in 2 days!) and I am still getting used to my new lungs. I suppose I worked with my old ones for 22 years so I shouldn’t really be surprised that there are still unknowns hidden around corners.

Other than a bit of crappy health luck, Christmas and New Year were fabulous. I always get a bit emotional at New Year and was reassured that several other Transplant patients reassured me that they do too. I think it’s just such a marker that anyone who has been through anything vaguely life-altering will find a whole sea of emotions well up in them at that time.

New Years Resolutions for 2009? The same ones I always make (and never keep) such as being more organized, tidier, etc, but also not to take things for granted. I always worry slightly that I am in danger of doing that the further away my old life becomes, and I never ever want to forget how lucky I am.

Another manic but fantastic week this week.

In my job, getting the pupils to perform in concerts is quite a bit part of it. And what time of year guarantees a concert or seven? Christmas. So this week is rather hectic however I am loving it and so far all pupils have made me uber-proud.

We also launched our annual LLTGL Christmas Media Campaign yesterday which has hit the ground running and so I am being kept rather busy with that when not rehearing/performing. I am amazed every year at all the fantastic people who volunteer to talk about their own stories, some of them extremely difficult and sad, just to try and help others understand what it is like at this time of year, to be affected by Transplant or Organ Donation.

We've had a brilliant response so far, and I'm very much hoping it continues. I have said it so many times but you cannot underestimate the power of seeing a real life story in the Media. Watching or reading about the human side of things touches people in a way facts and figures cannot. We are indebted to the fab LLTGL volunteers who time and time again come up trumps.

And finally and most excitingly of all, we have a gorgeous sparkly Christmas tree up in our lounge so now it properly feels like Christmas. I finish work on Saturday and am so looking forward to the fantastic traditions our family somehow still maintain. Merry Christmas Everyone!

I've been a bit quiet haven't I...

Sorry about that.

Life is hectic. But wonderful :) I am trying to get organised for Christmas (and not succeeding) trying to keep away from colds (and not succeeding) and generally rushing around like a headless chicken (succeeding very well on that one).

Like the pretty widget thing for Holly's Battlefront campaign I've put in my sidebar? You can get one by visiting her page and scrolling down to promote this campaign.

Off to write some Christmas cards. I am I am I am.

We have a new website!

WEEEEE!

Go and have a look! It's obviously not quite finished yet but hopefully you'll agree it's looking pretty good so far!

Can you tell I'm excited?

Off to calm down now...

Another hectic week has flown by...

But hectic in a really really good way. Lots and lots going on behind the scenes for LLTGL, Holly is feeling much better and mending well so her Battlefront campaign is getting a big kick-start, and work wise one of my Choirs is in a competition just before Christmas, not to mention the fact that of course all schools and choirs have Christmas concerts...

So it's rather manic right now! I was feeling nice and smug and proud that I started my Christmas shopping this week, then I received two Christmas cards in the post - people are so organised they're already sending their Christmas cards?! Erk!

I absolutely adore Christmas; sparkly lights, tinsel, glitter, presents, marzipan, clearly it's one of my favourite times of year! I am however rather scared at how fast it is approaching; this whole year has flown by incredibly quickly.

This is really quite a nothing update just to reassure people that everything is fine, just busy! Hope everyone else is also well and smiley.

Oh and one more thing, a little ask because if you don't ask you don't get...

My friend Jake got his transplant two months ago. All great, all fantastic, big celebration. He's a lovely guy, and his wife Laura equally so. They got married in the Summer so this is their first Christmas together.

Only Jake has had quite a few complications and setbacks. To the extent that he definitely will not be able to go home for Christmas. Not only that but some complications relating to his trachi tube means he will not be able to eat, drink or talk for the next few months until he's strong enough for them to sort it.

When I was ill some friends set up a Transplant Fund for me. Knowing how much of a strain Hospital puts on the family, I have set up a similar one for Jake. If anyone would like to contribute even the tiniest amount of Christmas cheer - please contact me through my website. Huge thank yous in advance.