Wheezy Penguin update time!

Look at me being so restrained that I didn't immediately post I'M HOME AND MENDED this time after discharge. Instead, I've been very cautious and waited a full week to watch for any yo-yo type behaviour, but since I was discharged a week ago today I think I can now safely say I'M HOME AND MENDED.

Well, pretty much mended. Basically, we are definitely on the right road now. Watching my lung function creep up steadily day by day has been a huge relief and joy. Not quite back to normal yet, but practically there. I've even been into work (don't tell me off, I only made it in 2 days before the snow scuppered that plan anyway....) and in fact Harefield are so happy that my follow up appointment I was due to have on Monday has been cancelled. WOOHOO!

It seems like the answer was a big fat whack of methylpred followed by a now 6 week long course of high dose oral pred. Whilst I am now thinking about food practically 24 hours a day (thanks steroids) they have done wonders, and I feel so much better. I had almost lost an entire litre of capacity so the difference is quite marked. I will confess I was rather scared at some points, particuarly when the phrase "we don't know what's wrong" was uttered (more than once) as I'd always rather know what I'm dealing with.

Was it rejection? We still can't know for sure, because even though the steroids have worked, steroids can work for a number of things, so it may not have been that at all. I think Dr C is still putting it down to the reflux issue; since coming home I've raised the head of my bed quite significantly and that may be helping too (I'm not really sure) but at least I know the fundo op will sort that out in January. Plus, I won't be able to eat properly for about 6 weeks afterwards so at least I'll lose the 20 stone these steroids are going to make me put on...

Huge thanks for all the lovely messsages people have sent me; I was really touched as even though it was a little blip, I was a nervous bunny for a while and the support was very much appreciated.

I shall leave you with a picture of our back garden as it is at the moment; yes this snow is hugely disruptive but it is also undeniably beautiful.

Wheezy penguin does the hokey cokey.

In, out, in, out, you shake it all about...

I managed a grand total of 4 days at home before being admitted. Again. To be fair to the team, they didn't have much of a choice, as my follow up lung function which should have shown a nice healthy jump due to a course of IVs bashing whatever infection was down there over the head, instead showed a further 10% drop. Bummer.

I was brought in for another bronch and further biopsies. I had a busy day planned for Tuesday and did actually try to sweet-talk the doctors into the idea that putting off the bronch till Friday wouldn't do any harm, but funnily enough they weren't particularly receptive to the idea.

I think I knew deep down I wasn't better; I was still wheezing, still needing to neb every couple of hours, still coughing and squeaking and huffing and puffing. I did however have a little sulk and cry on Monday because, let's face it, when the docs think they've treated and solved the problem and it turns out it wasn't what they thought....it's pretty scary.

So the question is...what on earth is going on? I was hoping that bronch and biopsy no. 3 would give us the answer but it turns out we're still none the wiser. On the plus side, this means nothing nasty has shown up; no massive infection, no organising pneumonia, no rejection...but of course we still don't know what we're dealing with.

But we do have a plan of action. I'm being stuck on nice high steroids (bring on the fat face) but the good news being they're in tablet form which means I can go home! Again.

Definitely a victory, definitely a positive, but am going to be a little more cautious about celebrating the idea that the wheezy penguin saga is over this time. Please keep your fingers crossed that as well as giving me a huge round face and causing me to eat A out of house and home, this hefty dose of steroids will sort out whatever it is. Because I'd quite like my lungs to start behaving again now. Please. Am asking very nicely.

**EDIT**
Serves me right for blogging so swiftly...doc just came in and the big guy at the top has instructed a slight change of plan. Instead of going straight home on oral steroids I'm going to be given 3 doses of IV methylprednisolone. This is the big nuclear bomb of steroids which aims to crunch any rejection into oblivion. Face will be fatter than I can even comprehend. Hmm.

I will then go home on Friday (yay!) on a scarily high oral steroid dose, but that will reduce on a weekly basis. A slightly more severe path of treatment but do you know what? If this is the safest option and the most likely way of preserving my lovely lungs, then let's do it.

Wheezy Penguin saga: the sequel.

I was a tad premature at celebrating my release from hospital, as that weekend, due to raised temps, a drop in lung function and a lot of chest pain, I was re-admitted for IVs to treat a suspected chest infection. The infection was probably all related to the closed airway business, but it was important to get on top of it asap so it didn't cause any trouble.

Clearly my body felt like I wasn't getting enough attention as it proceded to be the week of completely random and unnecessarily silly blood results. First my kidney function danced about in a naughty manner, but quickly returned to my usual "misbehaving but only enough to be kept on the naughty step" level. Then my potasium result came back sky high, causing everyone to move quite quickly to get me attached to a heart monitor (my mother did suggest that this may have been nothing to do with potassium, but simply to confine me to my room and stop me from causing trouble - how rude). They began to return to normal, I was de-wired, and then my ciclosporin level (immunos) jumped up so high I wasn't allowed to take any for 24 hours. That was hugely unsettling as you have it drummed into you as a transplant patient that you must never ever miss a dose. It's settled a bit now, but I'm on a much lower dose than I was on when I went in, still not sure why.

I had my 2nd bronch on Tuesday where they did the dialitation thing (look at me using a real medical word) which sadly I believe was done using a balloon for the stretchification - no pixies involved. They also froze (?) the airway to stop it re-closing. Dr C says I will need another bronch next month and may need the procedure repeated. I felt fine when waking up, other than the fact they'd hit my tonsils and they were now so grossly enlarged that they looked like comedy ACME tonsils. Had a bit of trouble talking and swallowing for a few days but they're going down now.

I was discharged on Wednesday (woohoo!) and IVs are due to come to an end on Monday, when I'll go back to clinic to hopefully hear that my lung function is back up and all shiny and nice again. Fingers crossed that that's the end of the Wheezy Penguin dramas so I can get back into the swing of normal life! I'll be referred for the fundoplication operation asap and by the sounds of things that will take place in January.

On a completely different note, our new LLTGL T-shirts are here! Please head over to our website and consider buying and wearing one; help us spread the word about Organ Donation and save more lives. Thank you!

Chapter 748: The story of a wheezy penguin.

Well firstly, I had a lovely half term. A and I took the opportunity to get away and went to Derbyshire where we also visited my wonderful Grandad.

I had been coughing a bit more all week but feeling fine, but suddenly over the weekend just gone I began feeling very wheezy and a bit breathless. By Sunday I was convinced something wasn't quite right and so rang the on-call doctor at Harefield to ask to come to clinic on the Monday. I thought I might be being too cautious but better safe than sorry.

So on Monday I headed up to clinic to get checked out. My FEV1* had dropped significantly (although randomly my FVC** was actually slightly better than last time...) and as the day went on I was feeling more and more breathless and sounded like I was playing a tin whistle very badly. Therefore I wasn't really surprised when I was told I'd be admitted that afternoon for a bronchoscopy and biopsy the following morning to check for rejection and to see if they could discover what was going on.

Most importantly, the bronch revealed no rejection (WOOHOO) but showed a lot of inflammation and narrowing, particularly on the right side. Dr C explained the reason I'm probably feeling so crappy is because the right lower lobe is very affected and that accounts for a very large portion of lung. I'm using nebs again to help ease the wheeze (ha, that rhymes) which just eases the symptoms, but we do have a gameplan.

There is research to show that reflux can affect lung function and can cause a number of problems. A study done earlier this year showed that I do have bad reflux and I was warned I'd need a procedure called fundoplication at some point in the future. Dr C suspects that the cause of this pulmonary hissy fit is indeed the reflux, which probably means I'll need this op sooner rather than later. In the meantime, I'm going to go back in in the next week or so to have another bronch and to have my airways widened (no idea how they do this, have a lovely image of pixies running in and errecting scafolding but sadly I suspect the true method is nowhere near as charming) which will hopefully make me less squeaky.

I have learnt from this admission that I have indeed turned into a complete and utter wuss. I didn't find out the results of the bronch for a little while and I really began to panic about how I was feeling and what it could mean. I think I need to man up a little again....I'm obviously out of practice being lucky enough to stay so well. Am going to try not to push myself too much whilst I'm still a wheezy penguin, and will update my blog once I know whether it will indeed be pixies performing my airwaystretchyopenyproceedure.


*How fast you can blow the air out
**Amount of air you can blow out of your lungs all together.

No apologies (I give up with those or I'll be apologising every time I post from now on!)

Quick recap of what's been going on.

Health-wise: everything is really good. Whatever it was that caused me to be in and out of Harefield seems to have vanished *touches wood 20,000 times* and lungs are still wonderful and behaving beautifully. Big yay for them.

Work-wise: everything is fab; September seemed to arrive with a bang and I am (as usual) extremely busy but also (as usual) enjoying every minute. It's lovely to see all the kids again, the little ones shoot up over the summer, it's frightening!

Hydro Active: As always, I took part in the Hydro Active (now the Adidas challenge but to me it will always be the Hydro...) "Team Jess" as we were called this year was formed from a number of Jess' friends and supporters, and her wonderful mum Jackie. We were all dressed in pink and I was in my fairy dress which I have worn for the Hydro before. Holly had brought along some rather bright face and hair paint which I ended up absolutely covered in! I looked so special that on the bus on the way there, an elderly couple paused to take a picture. I am choosing to see that as a compliment.

It was a lovely atmosphere as usual but of course for Team Jess, it was achingly sad as we had all hoped that we would be doing this year's 5k along side the girl herself. Jackie was incredible; I have no words to describe how much admiration I have for that woman, suffice to say it's extremely evident where Jess got her dignity and strength from. We paced round the track in a sort of power-walking fashion, stopping to pose for pics at each Kilometre sign and Holly (the queen of multi-tasking) was tweeting for LLTGL all the way round!

As the finish line came into view, we all held hands and ran towards it, raising our arms as we crossed the line. On finishing I felt tears pricking my eyes and turned to see all Team Jess members were feeling very much the same emotion. We all hugged as the tears flowed, the joy of finishing, and the sadness of Jess' abscence. It was a very emotional moment but one I feel proud and priveledged to have been a part of. You can still sponsor Team Jess by clicking here.

Last weekend, I was in Cardiff to give a talk at a very prestigious transplant event. There were 500 delegates there and so the pressure was on, but it went well and I received a standing ovation at the end. More details as to this talk coming soon on the LLTGL blog, but here's a pic for now.

I cannot believe we are already in October, and this month is going to be extremely busy, in fact I don't think I have a single free weekend. What an absolute joy to be able to say that - no big pauses needed to rest up and let my body recuperate. Pop over the Tor's blog to see what life used to be like for me. Fingers crossed her call comes very very soon.

Shock horror, it's me, actually posting on my blog.



Do I have an excuse? Not really. Maybe this blog is heading into retirement, I'm not sure. Anyway a catch up on what's been going on.


The end of term was manic, with dozens of concerts and shows, but I can't complain as I thrive off it and loved every minute, even though I was thoroughly shattered by the end.


The Summer holidays got off to a fantastic start when Jac and her husband came down to stay. I was hugely over-excited at this and we'd been looking forward to it (and trying to get organised enough to arrange it) for a while. We had a lovely day and evening together, but unfortunately that night, my body decided to enter into one of my more random and weird poorly episodes and I started being very sick. Feeling really quite rough (and a little scared - I'm a complete wuss when it comes to being sick, in fact I'm probably braver when I have chest drains and things in) and unable to even keep a sip of water down, I phoned Harefield and went straight up there to get some introvenous anti-sickness.


The main problem with this kind of thing for transplant patients is that if you can't keep your immunosupressants down, it sends your levels too low so once I was in, Harefield wouldn't let me go as I needed to have my immunos via IV as well. A couple of days later, all seemed to have stablised so I was discharged....only to be readmitted 24 hours later as it started all over again.


It was a frustrating two weeks or so, but it seems (she says touching wood half a dozen times) that it has disappeared. The docs were baffled, and the only thing we've changed is to double up one of my drugs (omeprazole for those medically minded folk) so that might be what did it.


Medical rubbishyness aside, one of the highlights of the summer was the Glee workshop I ran mid-August. I had been dying to do one and knew there was a fairly high demand so decided to just go for it and it was a huge success. We had about 30 participants aged 11 to 25 who learnt songs in harmony with choreography and then performed them at the end of the day to family and friends. It was a rediculously busy day and I'm not sure I actually sat down but I loved every single minute of it and would definitely like to run another one.

Participants rehearsing around the piano.


So suddenly here we are at the end of the Summer holidays, and it feels like I haven't even made a dent in my to-do list. I am looking forward to starting back (a big perk of loving my job) but admittedly don't feel quite as rested as I'd hope to! My lungs, I am happy to report, are behaving exceptionally well and in fact on Thursday I achieved my highest Lung Function yet at Harefield (Woo!)

Bring on September and a new term full of new excitement, and lots of new things that continue to prevent me from keeping this blog up to date. But do you know what? If life is getting in the way of finding time to sit down and write on here, I am certainly not complaining.

The A - Z of me.


Has it been done before or have I dreamt it up? Suspect I've read it on another blog but cannot find where....anyway, here's my very own personal A - Z.

A is for... well, quite clearly A is for A. My A. That's all that needs to be said on the matter.
B is for... Blonde - both in hair colour and in the brain.
C is for... Choirs. I love them. I run one, sing in one, and help coach in others (mostly for children). The feeling you get from singing together in harmony is awesome.
D is for... Determinism. I'd like to think I have a fair amount of this. It could also be called stubbornness.
E is for...Excitable; I have a tendancy to become far too over excited and need to go for a lie down (sad but true).
F is for... Friends. I have some that are absolutely invaluable; I don't know where I'd be without them.
G is for... Glee. I wish people in my life would burst into song or know the harmonies automatically when I do.
H is for... Hope. I think it's pretty damn important to have hope in your life; when in a difficult situation I'm always craning my neck looking for the rainbow.
I is for... Imagination. I have a vivid one, which is not always a good thing.
J is for... Jewellery. I am a bit of a magpie and have a huge assortment of big sparkly necklaces, bracelets and earrings. I like sparkly stuff.
K is for... Kettle. OK cheating here as I'm trying to get to Tea. A strong hot cup of tea can work wonders in most situations. I probably drink too much of it but it's my only real caffine fix (not a big coke or coffee drinker)
L is for... Life. It's a wonderful wonderful thing.
M is for...Music. I come from a musical family and can't imagine a day without it. Music is food for the soul.
N is for... Nurture. My family are a big part of my life, always have been, always will be.
O is for... Optimism. I am an optimist, however with a good healthy dose of realism. I rather like Peter Ustinov's quote on it: "I am an optimist, unrepentant and militant. After all, in order not to be a fool an optimist must know how sad a place the world can be. It is only the pessimist who finds this out anew every day."
P is for... Pink. Because I love it.
Q is for... Quotes. Quotes about life, about love, about hope or motivation. I collect them for rainy days, as exemplified above.
R is for... Reading. I was brought up in a house piled high with books, with parents who would read us a variety of stories (with all the voices) from a very early age. I love getting lost in a good book, but am notorious for returning to my beloved old favourites.
S is for... Shoes. I love them, but am completely incapable of walking in heels in an attractive womanly way.
T is for...Teaching. I teach a variety of ages, and I absolutely love it. I find it extremely rewarding and each day is refreshingly different from the last.
U is for... University. My years at Bristol University were some of the most exciting and happiest in my life so far. That is despite my, by then, extremely poor health. University taught me a lot (mostly in the school of life), and gave me some wonderful friends.
V is for... Vitamins. CFers have to take vitamin supplements due to absorbtion problems, and along with my enzymes, I've been on these since I was born and always will be.
W is for... Waterworks (of the teary nature). I am not an attractive crier and unfortunately cry at the drop of a hat.
X is for...X-rays. On guestimation I've had around 200 X-rays in my lifetime so far. Probably more in fact.
Y is for... Youth. I still feel like I am in my teens, and that I could wander into a high school classroom, sit down in a lesson, and feel perfectly at home. This is despite the fact I teach this age-group...
Z is for... Zzz - I love my bed. I love curling up on it just to lie and read.

"Rich is excited about what the future might hold"

That's my mate Rich's facebook status at the moment.

A couple of weeks ago, Rich was in the Brompton hospital where he had been living for the past two months. He was unable to do....well, anything really. He was using a bi-pap (non-invasive ventilator) pretty much all the time just to keep breathing, he was extremely ill, and his quality of life was poor to say the least.

Rich got his call for his new lungs and new life in mid-june and so far, is recovering extremely well. His facebook status brought tears to my eyes as that's exactly the point; Rich is now able to contemplate the idea of a future. Of new and exciting possibilities. Of persuing dreams and ambitions. Of simply being around for family and friends. There's a chance, there's hope, there's more to come.

Yesterday I logged onto facebook to read that Donna Mansell - an avid campaigner who was waiting for a new heart - had died. Donna leaves behind a grieving husband, and a seven year old daughter.

This is the very real reason that we need to keep campaigning for more donors and for improvements to the transplant system in the UK. If it wasn't for my donor, the top of this blog would now read "1984 - 2007".

National Transplant Week starts this Sunday and runs all week. Please take the opportunity to raise Organ Donation with someone who might have never even thought about it before. There are events happening across the country; you can join in in a thousand different ways, and make a difference.

Let's give more people the chance to think about what the future might hold. The chance to contemplate careers, families, mortgages...all those things that most of us take for granted.

Organ Donation saves lives; the lack of registered donors kills. Please, think about it, talk about it, do something about it.

Thank you.

I am feeling increasingly frustrated following comments and remarks surrounding this story here so I had to blog about it.

The story is essentially an incredibly sad one; a young woman with end-stage CF got a double lung transplant, only sadly to pass away from pneumonia several months later. The thing that has wound me up is that everyone has hooked onto one thing; the lungs came from a smoker.

The use of a smokers lungs is an entirely seperate story, and granted, still one up for discussion. But the fact that these lungs previously belonged to a smoker is not what caused her to die. Pneumonia is what caused her death; sadly a complication that anyone undergoing a transplant can suffer. I myself had pneumonia in the month after my transplant which is what caused me to plummet to such dangerously ill levels that the team thought I would not last the night. My lungs did not come from a smoker.

According to her relatives, this lady would have refused lungs had she known that they came from a smoker. This is a completely personal preference. I personally would have accepted any lungs that the team declared good enough as I knew that it was my last shot and that people wait years and years without a single call. I trusted my team implicitly; surely have to when you get to this stage?

Don't get me wrong, I have nothing against her family; I cannot even imagine the turmoil and grief they are going through having fought so hard and come so far, only for the transplant not to work. But I am frustrated by the Media, who have taken two issues and looped them together, to create a cause and affect when that is simply not the case.

There are dozens of comments all over the internet along the lines of "how dare they [the hospital]" and "disgraceful! what poor care" (again the hospital) as well as "how disgusting, to be given a smokers lungs!" and these are really beginning to frustrate me.

Firstly, and most obviously to me, the person who donated those lungs was, in fact, a person. They have loved ones, they have a family who is still grieving for them and who in a moment of generosity agreed that their organs could be used to try to help others. This person gave the gift of life; I don't think "how disgusting" is really a very tasteful response.

All organs undergo extremely rigorous testing. The lungs would not have got through these tests if there was anything wrong with them which caused the team to doubt that they'd give the recipient an extremely good chance of survival. These criteria are so strict that many organs are deemed "non-viable" which is what results in a lot of the false alarms that people undergo. The medical team will have looked at the lungs on an independent basis; obviously the fact that the person was a smoker will have been taken into consideration but when you consider that 50% people waiting for lungs die before some come through, and that any potential donor having something like a chest infection could render the lungs non-viable, then what choice do medical teams have but to open all options and look at each set of lungs on a case by case basis?

The very sad fact is that there are not enough donors. People waiting for lungs cannot wait indefinitely; there are no machines to prolong life whilst the perfect pair of lungs are found. Medical teams do now have to use organs which are described as "sub-optimal" - that is because there is such a dire shortage that at least this offers a chance of survival.

The story is a tragically sad one, and my thoughts are with her family. They are also with the donors family, and with the teams around the country that every day have to make difficult decisions without a crystal ball to see how things will turn out. Transplants are not failproof, but they offer hope, and each and every one of us can raise awareness about them to increase the number of donors and therefore save more lives. Let's use this to do something positive; there are 10,000 people out there who desperately need us to.

PS- LLTGL Ambassador Victoria Tremlett has done a fabulous radio interview about this, which you can hear by clicking here and forwarding to 1hr 13 mins in. Just listen to the desperation in her voice; we need more organ donors. Please keep spreading the word. Thank you x

“A man's worth is no greater than the worth of his ambitions” - Marcus Aurelius

“When ambition ends, happiness begins.” - Thomas Merton




I'd start with my usual apology about the lack of blogs recently, but I think everyone's sick and tired of that. Let's face it, life is busy, very busy, and my blogs are less frequent.

So skipping that (sort of), onto my main reason for actually sitting down to write a blog. I've been thinking a lot about ambition recently. A rambly waffly blog about to follow.

Ambition is a good thing. It drives people, it prevents people from becoming apathetic an pushes people through harder times and over obstacles. However I'm not always sure ambition is a good thing. Maybe it's possible to have too much ambition?

I actually wouldn't label myself as ambitious; I'm very easily content and don't feel the need to constantly better myself. Maybe I'm not particularly driven or maybe this stems from years of having to re-adjust my goalposts as my health declined - I'm not sure - but I get quite comfortable and don't often strive for change in my own life (although in external issues I am passionate about it's an entirely different story but that's another blog...)

Mind you, if I had no ambition at all, I wouldn't be where I am today; a graduate with a multi-faceted job and chairman of a charity, so maybe I am quite driven but only to a certain extent?

There are two very oposing quotes at the beginning of this blog, both of which I find extremely interesting. The first suggests that only those who reach for the stars really sparkle, the second suggests that whilst you are constantly striving for more you will never be happy with what you have.

Can both be true? Is there a middle ground?

I do see a lot of truth in the latter, but I believe there can be a balance. I dp think ambition is a good thing, but measured and with a solid ability to enjoy what you have here and now. If we didn't aim for more, we'd never move forwards, but if you're constantly pushing to progress today will pass you by before you've even had time to appreciate it.

I am very lucky in that I find it quite easy to adapt my goals and ambitions. This means I am quite easily pleased (anyone who knows me will know that this extends to things like a pink birthday card with googley eyes on it giving me joy for absolutely ages...) and also means that I can usually put something to the side when it is just too much of a struggle. I'm not saying this is a good or bad thing, but I know it's made my life easier over the years.

As well as aiming high and striving to better ourselves, I think we should be able to look at how far we've come, what we can do right here, right now, and be able to enjoy that. There are so many things I don't make the most of right now because I'm thinking too much about next week, I'd like to pull a bit of that balance back I think. After all today is here now, and tomorrow is only a possibility. Make the most of both.

Apologies for being profoundly rubbish on the blogging front.

As per usual, whenever I go silent, it's a good sign; it means life is so busy that I've inevitably triple booked myself and don't have time to update my blog. So yes, all is fine; I am well, I am very happy and I am extremely busy.

March is always a busy month and my favourite month of the year; the weather is warming up, we're heading towards the end of the spring term, but predominantly because it's my birthday. I had a fantastic day and a wonderful celebration, dancing the night away with fabulous family and friends. Below is a picture to demonstrate the classy and stylish celebrations that were held (it was a 90s themed do, we didn't just inadvertently all decide to dress up as Spice Girls).



That's all of an update you're getting today I'm afraid, instead I'm going to list some blogs that I think you should check out when I'm being naughty and lax at writing:

Lucy's Blog.
Yes I'm a tad biased as Lucy is my sister, but she's a bloody amazing writer. Just take a look, particularly at this recent post which I thought was particularly fab due to it's frankness and honesty.

Nick's blog.
Nick's son Adam has neuroblastoma. I have a connection with this family in the fact that I am Adam's music teacher, or was when he was well enough to be in school. The family are desperately trying to raise the money to get Adam to the US for life-saving treatment so please do pop over to his appeal website and read a bit about the family and the campaign as well.

Jac's blog.
I just love her style of writing, and also the stories of Seb, her rather cute dog. Jac is a double lung transplant recipient like myself.

LLTGL Ambassador blog
Written by Tor and Rachy (both waiting for lungs), but earlier this month Rachy received her call and is so far doing very well. If you want to learn more about the wait for transplant, this blog is one for you.

Tori's blog
Another lovely lady waiting for lungs; I love her honesty, her style (both in writing and in her fab clothes) and her ability to pull off bright red lipstick!

The end of term is looming (and with it plenty of concerts) but then for the Easter Holidays, which I am extremely excited about as it will hopefully provide me with an opportunity to catch up with myself. Watch this space.

Just to reassure you, I haven't done any of the following:

a) died
b) hit my head and suffered from amnesia
c) given up blogging
d) fallen down a hole somewhere (likely, but luckily untrue this time)
e) become a monk
f) run away to mexico to start a new life

I have merely been busy. But found time to disappear off to a little piece of paradise for a week...


Me swimming in paradise, aka Mauritius.

It was beautiful, hot, relaxing and very much needed. And I feel very lucky and refreshed.

Bit of musing because I need to really; apologies for this being a bit deep on a Monday morning but it's been stuck in my head and I really need to get over it, and, well, my blog is my therapist so hear goes.

I've been thinking a lot about this dream coming to an end recently. Just to reassure, there is absolutely no reason for me to be contemplating this - my lungs are behaving exceptionally well - *touches wood half a dozen times* - and I am happy and healthy and very lucky.

I think it's more that it has been triggered by several other things, one of which is reading the blog of this incredible young woman here. Eva is in the end stages of chronic rejection and desperately needs a re-transplant, fast. Please do pop over to her blog and leave her a message as she loves reading them. Advanced warning, she is very poorly and brutally honest. Every time I log onto it I hope hard that I read the message saying she's got her call.

As well as this, my life seems to have structure and a future right now, and perhaps I am scared of following this path which has implications for not this year and possibly not next year but for some time after that. Maybe even after all this time, planning ahead is frightening as it feels almost like I am tempting fate.

Maybe I just feel too lucky. I have been given so much, do I feel spoilt and demanding in wanting more? Am I afraid that my luck will run out? I don't think afraid is the right word actually, rather that the idea of it running out has been something I've been contemplating a lot more recently.

No one is immortal. I guess the threat of rejection is something every transplant patient considers at some time. For some reason, I've got it into my head that because I've not had any so far *touches wood lots of times again* if/when I do, it'll be a biggie. Any logic to that at all? Nope, none whatsoever. I get cross at myself for thinking about it when a) I'm fine and b) it's all a bit self-indulgent. I think by blogging maybe this little black hole of musing might close up.

Those of you who see me on a day-to-day basis know that there's nothing wrong and I'm not down or depressed. Merely a little thoughtful at present. And it's not really the kind of conversation you strike up with someone: "you know this whole transplant thing? Well I've been thinking about when it all comes to an end..." - way to ruin someone's day! But it is something I think about. Now and then. Don't dwell, but think.

What's the answer? There isn't one. No-one knows when their dream will come to an end, it's not something that is only relevant to me, so the only answer is to keep on loving it and making the most of it whilst it shimmmers.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
- Thich Nhat Hanh, Vietnamese Monk.

It's been a while.

Sorry for the delay, for the break. January was a crappy month for the CF and Transplant community and it really has shaken me a bit.

Jess' funeral was beautiful. Desperately sad but beautiful. I cannot write about it however both Sarah and Holly wrote lovely accounts. Jess' family were incredible; the strength of the human spirit will never cease to amaze me.

A friend emailed me today about something related to organ donation and mentioned that her thoughts and feelings about organ donation had also been deeply shaken. I emailed back with what was essentially a discussion in my own head and in doing so realised I was talking to myself more than anyone. So I thought I'd write it on here. The road to transplant is such a long and difficult journey, why do I still believe that fighting for it is what I should dedicate my efforts to? Because I do, I have to do it, I need to do it...I want to do it.

When you are listed for a transplant, a million and one emotions fly through your head. There is a sense of fear, of apprehension, of acceptance of where your health now is, and of relief. Relief because you already knew by this point that you were extremely ill, and now someone is saying that there might be a way out...that there might be an answer.

The offer of a transplant for many changes their status back from what is essentially terminal to "extremely ill but with a light at the end of the tunnel".

When looking at a typical transplant patient (am thinking cardio-thoracic mainly here) they are hardly the ideal candidate for surgery. In fact, if it was any other kind of surgery being suggested I suspect they'd be laughed out of the hospital. At the end of 2006, I don't think my body could have been much further away from "optimum condition" to tolerate such a major operation.

When I was taken down to theatre, my last words were "I'm so lucky". This wasn't because I was convinced that that was it, I was mended, but because I knew that either way, that part of my journey was over. Someone had tried to save me and hopefully it would work...and I had a chance. A door was opening. I felt relief; the fighting, the hanging on, all of that was for a reason, and now what would be would be.

Tranplantation is not foolproof. It does not always work. We know that, as we sign up to go on the active list, we know that. But I remember thinking "at least there's now a chance". That's what I desperately needed, and that's what I was fighting for.

When it does work...well, all you have to do is read my blog over the last three years to see what happens when it does. I still love watching people's faces when I tell them that I'm a double lung recipient. The shock says it all; how well I look, and how my CF past is a now just a shadow in the background.

Transplants don't last forever. Sad but true. But do you know what? If it all ended tomorrow, I've already done a billion and one things I never thought I'd do, seen a billion and one things I never thought I'd see. I've experienced "normal" life...all thanks to one person, one decision...one family.

For me, transplantation equals hope, a chance, a rainbow. It offers a hope that there are better things to come. Hope that you might step through the looking glass and experience a life you've not dared to dream about in case it should not materialise. And that dream alone is worth fighting for, especially as when it comes true, it's bigger, better and more colourful than you ever could have imagined.



www.lltgl.org.uk

Jess.


I've started rewording this blog now for the umpteenth time so I'm just going to write; I keep worrying as to whether I am saying the right thing or not. I need to just write.

I am missing Jess very very badly at the moment. We texted back and forth most days and it hurts knowing she hasn't made it, that her glimmer of hope came too late. She should have made it, I think I am angry as well as sad, she should have had her call earlier. Four and a half years of clinging on is just not fair, and consequently, her body was just not strong enough.

Instead of going on and on about the sadness and the ache which is currently making me feel quite blank and flat (this is my blog, I'm allowed to be selfish) I'm going to talk a bit about what I loved about Jess and more importantly, what she taught me.

Jess was the strongest person I have ever met. Literally. When we went up to decorate her hospital room at Christmas, she was fighting so hard I have no idea how her body was doing it. Mentally, she never ever gave up either. She had a determination in her, a fire that made her so sure of her path and gave her such a focus. It inspired and motivated me to do more.

Jess had a huge heart. She was in hospital having a rotten time when I put up some sort of sulky status about something completely mundane I was annoyed with and the text came through almost instantly "Are you ok? Thinking of you x" Typical Jess always thinking of others; a memory that several other people have conveyed to me in their messages for her condolence book (which, incidentally, if you'd like to contribute to is open to anyone - no matter whether you knew her or merely knew of her and were touched by her - email me for more info). When I was in hospital for IVs this November, I texted her one day saying I was sending her all my mendy vibes and she texted back saying "no please save some for you."

She had a fantastic sense of humour. When Holly and I went to film with her for Battlefront, we spent most of the time being gently reminded by the crew that this was supposed to portray the severity of life on the list. It was hard as Jess' nature was to laugh and smile, and we all kept giggling and gossiping. We did get the filming done in the end and Jess' contribution to Holly's Battlefront episode - her frank portrayal of life waiting for lungs - was a vital one.

She reminded me what is important. Jess absolutely adored her family and her friends, and would tell people that they were special to her. When she decided to do something, she got on and did it, never mind whether it was practical, easy or virtually impossible. I think post-transplant, it is easy to loose some of that spontaneity, to forget to tell people regularly how much they mean to you. I intend to remember that.

I am definitely struggling with survivor’s guilt. I know it’s not uncommon and I’ve felt it before when losing friends with CF, but it’s pretty full on at the moment. Why on earth am I so special that I got this magical chance? I know the answer of course; it’s because there is no rhyme or reason. Just because Jess gave and gave and gave and fought harder than was probably humanly possible...effort sadly does not guarantee who gets the winning hand. Our paths were so similar in so many ways; both pretty stubborn, both fairly high-profile fights, then she decided to do the Hydro Active... I felt like she was a younger version of me. Perhaps because of that, I had a naive subconscious belief that she had to make it through, because I did, so it was only logical. I hate that I was lucky and she was not. I told you, my blog, my ramblings. My thoughts are with her incredible family and those closest to her; I cannot imagine just what they are going through.

Jess fought for what she believed in. She believed very strongly in organ donation, so instead of sitting around she got up and fought. And never ever stopped. Ever. That’s my biggest lesson; to live and laugh, to love those around me, and to fight for what I believe in. And to never, ever stop.



www.justgiving.com/jesswales

Images courtesy of Holly Cocker - thank you Holly x

I think most of you have heard the heartbreaking news about Jess, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will.

This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is here. She actually keeps two blogs, the other one can be found here.

Reading her post about sharing her story publically got me thinking. Particularly this bit:

When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register?

I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think this month gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger?

Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?



Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.

I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.

Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.

My next blog will be about Jess. I just have to find the words.