Thursday, October 26, 2006

Yesterday was my 6 monthly check-up at my transplant centre. As we drove up chatting away, my mum pointed out how the last time we had gone this route it had been via ambulance with lights flashing and siren blaring; it feels almost a lifetime ago since we made that trip. We arrived in good time and even managed to find a free disabled bay (an ironically rare occurrence; for some reason hospitals appear to think that 5 disabled bays will be ample, when in fact it seems logical to me to assume that quite a few people attending hospital regularly might be blue badge holders, particularly a heart and lung hospital). I can count the number of times I have been to harefield on one hand, and because it is such a rarity, plus of course because of what it represents, I always get a huge mixture of emotions flood over me – excitement, anticipation, fear, and also a slight sinking feeling of sadness.

The morning is spent doing various tests (although I didn’t do any of the lung function tests as I am still banned from doing those due to the risk of them making my lung collapse again) and then we headed off for a bite to eat. After a rather lively lunch with much laughter due to inability to get food into mouth without spilling it everywhere plus excessive pudding helpings, we went back across to the transplant clinic, to meet with the doctor for the chat part of the checkup.

A slightly confusing start to the clinic for everyone, as we sat down with the doctor who gently asked how I was doing to which I responded brightly “yeah I’m fine thanks how are you?” Somewhat confusing to a doctor who is seeing me in a transplant clinic and had clearly been reading my notes detailing the summers events. It is a sort of ongoing problem I have, where my desire to protect and not upset other people by describing the most frightening and disheartening aspects of my health seems to seems unable to distinguish the health profession as people who don’t actually need shielding. This is perhaps somewhere where a positive attitude does not help, when it results in the sentence “but I’m doing fine really” being tacked on the end of everything.

We pummeled the team quite vigorously to find out what was going on transplant wise. There have been two main problems recently; one is the continual lack of donors, and the other is non-viability, where there is a problem with either one or both of the lungs, (which is what happened at my false alarm in August) resulting in only one or perhaps neither of the lungs being transplantable.

I came away from the appointment feeling rather downhearted, which is daft because there was much to be positive about and focus on. But I can’t help but get frustrated. The general consensus of the population is that people support organ donation and survey after survey shows that people would like to be organ donors in the event of their death. Yet there is still such a discrepancy, only 22% of people are on the organ donor register, and still the number of transplants is decreasing. Whilst I am determined to keep on raising awareness at times I feel like I am fighting a losing battle. It is true that every day we receive messages from people who have been touched by our campaign or who have learned that they can sign up via the net and have done so straight away (this is the most common response) but I cannot contact everyone in the country to make sure they have considered the topic… and I am running out of time. I mentioned the dizziness and puffy spells at clinic, and they explained that my heart has to work pretty hard now due to teenytiny lungs, then gently told me that perhaps I need to slow down a bit. This is not what I wanted to hear. I wanted to hear that there is something miraculous that they can do to keep my lungs holding on that bit longer, to improve them a bit more and to help me last that extra mile whilst I wait for my transplant, but they can’t do that.

As my mum pointed out on the way home (which made me want to deck her although it is clearly not her fault and she is 100% right) it is down to luck really. If I am lucky enough to be in the 50% that get this transplant then yay, fantastic, the possibility of some years with healthy lungs is an exciting contemplation, but because it is down to luck, this is why I have decided to go out and live life now, not cocoon away in a self preservative manner. But it still makes me sad, I am not brave, I am greedy and desperately want to keep on living.

I do love writing this blog, it is so therapeutic, as even just by doing that it has made me realize how lucky I am to have such a fantastic life that I want it so so much, not everyone is lucky enough to feel that happy with their lot, so already feeling perkier. (proof of my “but I’m OK really” syndrome there!)


livvy said...

Sometimes after reading your Blogs I struggle to know what to say - how anything I ever say will make you feel better - but you must always know how precious you are to many - me included. You are someone who will always make a difference because your determined to do so, no matter how bad you feel and you have made a difference to many people's lives - including mine. xx special lady xx

Maria said...

I wish there was something we could do or say to help, but with a situation like this no words of comfort or support can possibly help make things better.

The only thing I can say is that since seeing you on the TV and seeing your Live Life Then Give Life Campaign, I have made sure that all my family are on the Organ Register and I'm slowly working my way through my friends.

Reading your touching blogs only makes me realise even more that, however much I don't want my own life to end, the thought of me taking my organs with me is such a waste when I think of all the families lives I can change.

When you talk to people and they say things like "how could you think of letting them remove the organs of the poeple you love when they have gone" I then show them your blogs and they realise what better way to show somebody how much you love them, let there final gift be the gift of life to families desperate for that call.

We are behind you 100% and won't ever give up trying to promote Organ Donation so don't ever feel like you're on your own because already your message is spreading far and wide.

Thinking of you and praying for that call xx

Anonymous said...

Dear Em,
Like everyone we wish there was something we could do that could make things better for you. Just need you to keep going - a daily struggle we know - while we keep everything crossed for you and work on others to join the Organ Donor register. Much love,
Kate & Alice

klics04 said...

Em, everyone before us has said it all. take care. love and gentle hugs to you. kevnles

Emmie said...

Aww Em hunni, try to keep that little pink chin up. It must be SO hard for you, I don't know where you get your strength from, I really don't. But try to remember that every single person we know who has ever had a transplant waited day after day like you until finally one day that phone DID ring and it did happen. Its easy for me to say that I know, but it's true. We will keep fighting until we get everyone on that register...every day people are signing up and every day is one day closer to the date of your transplant.
Love ya billions xxxxxxxxxxxxxx

Anonymous said...

Hi Emily,
you have to keep fighting! You are such an inspiration to so many people and even though you personally havent yet benefitted from all the legwork you and Emmie are doing, other people are. Not just lung people but everyone waiting for organ transplants.

In addition, you inspire so many people to keep on raising awareness about organ donation that the effects are multiplied- i think of it like a hub and spoke model, to use technical-like jargon... you and Emmie are the hub, and we are all the spokes spreading the word out there. But we all need you to keep inspiring us :)

Anonymous said...

i'm glad u love writing ur blogs - i love reading them emily, every day i check to see if you have added one. its funny, i don't really talk to you but i feel i know you and sometimes reading ur blogs i get goosebumps and desperately want u to get this transplant. reading in detail ur feelings and experience is scary but helpful at the same time for me as a fellow cf'er - i hope that when the time comes i will be as strong as u are.
lots of pink love to you
siobhan xxx

Anonymous said...

Emily, you are amazing...always manage a bit of humour no matter how dire things seem. Like everyone else, I want so much to help but can only support you by mail. Try not to worry too much about the lack of donors or percentage of transplants. Just keep reminding yourself that you are being restored to health, insist that you do not accept any other outcome.Do this as often as possible.If and when you get depressing news from the medics, always contradict it immediately in your head. This has already worked for me twice, despite the worst medical prosnostics. Mind over matter at all times. So, little chin well up - you are going to be back to perfect health before you know it. Then you can go dancing in those pretty pinky red shoes. Take care love and get enough rest.

Nicola said...

Like everyone else has already said,I wish I could change things for you sweetie.I'm nowhere near as strong as you and I'm not even on the list yet.If I have even the teeniest bit of the courage,strength and sheer determination that you exude when I go on that list,then I will be happy.

I pray everyday that today will be your day for that call,and until it comes I will keep doing so.

Lots of hugs xxx.

Anonymous said...

Em, you are anything but greedy and you have every right to want to keep living, you have made a huge difference to so many people's lives and their perspectives due to your bravery and amazing outlook on life.

I hope and pray each day that you will get your new lungs and will keep passing the message until it happens...


Anonymous said...

Hang in there Emily...we've still got work to do! ;o)

Anonymous said...

I don't think "greedy" is the right word to describe you, at all :)Of course you are lucky to have such a wonderful family and good friends - we all are - but wanting to enjoy that for longer doesn't make you greedy, it makes you human. And although you do often appear to be superhuman in your strength and determination, you must remember that you are allowed to feel down and frustrated sometimes :)

The work you do to raise awareness about organ donation is fantastic, and I'm sure most people who read your blog would agree that we all bring up the topic whenever possible and try to make more people aware of the current situation! So it may feel like you're losing the battle, but you're not - you have lots of soldiers fighting with you and for you.

You have an amazing lust for life, and you WILL get the call...just hold on :) xxx

Anonymous said...

So much love to you my deary, I hope so much you'll be lucky, I pray every day for that. Lots of love to you my pumpkin. xxx

Anonymous said...

Hello Miss Em,
I smiled when I read the "yeah I'm fine thanks how are you" - so curiously English :)
I keep checking my phone for that text - the one that says you got the call and it's going ahead. In the meantime, I'm wearing my tee at every opportunity and spreading the message.
Keep the faith,
~ James xxxx

Anonymous said...

em, you know, greediness can sometimes be a good thing...ok, when it comes to haribo or chocolate cake maybe not...! but i'm pretty sure you're allowed to be greedy with this, with wanting life. and the very fact of being greedy just shows how brave you are.

you can have all of my luck to bump up your lucky factor
love you lots xxxx

Anonymous said...

emwI read your blog often Emily, I am one of your Mum's original music banders, my children are now 17 & 15 but they still remeber Postman Pat's doorbell!
Two things struck me as I read todays entry - one was that I read something by Kathryn Apanowicz, Richard Whiteley's partner (Richard's corneas were used to give two people their sight back). Kathryn said she believed people who willing to receive a transplant (let's face it, most of us) should be prepared to donate too! I thought it was a really good way of putting it into perspective.
Secondly, you should get your blog published!
PS. I've just thought of something else - Superdrug, Epsom have bumper tubes of ALL pink Smarties!!!

Anonymous said...

emily hun ,, sending you all my love and as emmie said, everyday on the list is a day closer to your transplant, and you will get there, i have no doubt about it :) so keep your chin up and remember the words you always said to mary , .. love to you always alan xxx

Anonymous said...

Em, reading your blog really brings home just how hard it is waiting for that call, yet you still manage to get the humour in. I chuckled picturing your expression when wanting to deck your mum as I've seen it before... here.

As everyone else has said, we talk organ donation at every opportunity and hope and pray that we hear your call came.

Loads of love chuck.
Sue & Chris xxx

Anonymous said...

As I think you've said, and as Kina does, live life now, as much as you can. Waiting is kind of like watching water boil. No use really. Have some fun and take that mind off of the organ situation. Kina was told to snap out of that rut, and bing, bang, boom. She saved herself, and was able to make it. I think you can too. You seem sufficiently amused by life, in a way we all should be.


Anonymous said...

Emily just wanted to say helooooooo and let you know as always we been thinking of you. Went for few day break & saw Blackpool illuminations soo sparkley and pretty lights. Rach & katie even got pink & black fluffy flashing bunny ears!!!!! lol

Sending BIG ((hugz))) Elaine Rach & family xxxx

ps positive vibes for 'that call' soon .......

Anonymous said...

There are so many people behind you, willing you to get those lungs. I hope you get your chance.

Be lucky. xx

Anonymous said...

Hang on in there, Emily, although we all know that you will. Sometimes we have to go down to the bottom and feel all those scary feelings before coming up again to carry on the fight. I remember the roller-coaster of my wait - crying and laughing was the name of the game. Keep going, you are touching so many lives.

I'm telling everyone I know about you,and all those other people waiting, and how important it is that people get of their arxxxes to register, not just think about it.

Diana xxxx

Anonymous said...

Keep fighting Em, don't give up the wait. You've got lots left to give and receive to and from everyone that has ever touched lives with yours. You're the biggest inspiration I've ever had the pleasure of meeting.
Sending you big hugs, with tears in my eyes.

Anonymous said...

Emily keep going girl as you are doing so well and you are in my thoughts often. I really hope and pray you get that special phone call very soon.
I noticed someone mentioned getting your blog published. I think using this blog and other people's who are waiting on the list publically could help.
Keep going but never think you are greedy as you so are not.

Anonymous said...

Woohoo yay! Only you could come away from a not entirely upbeat meeting with your transplant team and turn your write-up into the most positive thing in the world. :) xx

Anonymous said...

Heya Emily,
Its been a while since I popped my head around these parts! Keep the head high, and I really hope your day comes really soon! Take care! x

Anonymous said...

Hey Emily!

I always read your blog! You write veryvery good and also funny. I'm Marcia, from Holland, also CF. But I'm okay now:) I really am hoping for new lungs for you these days!!! I think you really deserve a 'healthy' and good life without health problems!! I really see your joy of life, that's great!
Keep up the fight, you will win your battle if you keep on going like this!

xxx Marcia

PS. If you want, you can add me on msn!:) I always like to chat away;-)

Anonymous said...

Right miss, let me just put the record straight here. If anyone's greedy around here, its me-gobbling up your blogs like they're going out of fashion (au contraire-very en vogue!) because just as you find it a relief to type away your worries, I can't begin to tell you how wonderfully delectable it is to be fighting them with you. You're not only the toughest cookie going, but also the sweetest, the yummiest and its gonna take a helluva lot to make you crumble! (what a fantastic personal ad that would make!) to be honest, i pity any negative feeling that attempts to bring you down-it shall be squished, stamped on and walloped out of the stratosphere not once, not twice but many many times over by your army of support-we're all armed Em, so be sure to keep us posted of any twinge of doesn't stand a chance! All my love, hope, strength and determination to you my lovely girl xxxxxx

Tasha.x said...

Keep fighting our pink one...You have so much left go give. I pray everyday that your call will come and i will keep praying until it does. I know its only around the corner now..Keep fighting darling..Your such an inspiration to everyone. Meeting you was one of the best days of my life, i felt so privelaged. Dont forget how special you are.. All my love and hugs hon xxxxx

Anonymous said...

Hi chick, after reading your latest blog - I completely understood all your emotions. As happy as we are..reality kicks in about the chances of transplant. But..these feelings are short lived..u have the right motto - LIVE LIFE NOW - I did in hospital too. Trust me after your transplant u will get to PARTY TWICE AS HARD...which we all want to happen to u! Keep smiling. Hugs. XX

Anonymous said...

I think it's so fantastic that, instead of just sitting back and bemoaning the lack of donors, you have spent so much time and effort (and energy!) raising awareness and trying to get that 22% up higher. I sometimes can't type these comments because my fingers are too tightly crossed for you.

Take care Em. You're a starlet x

Anonymous said...

Salut Em, c'était super de te revoir. On adore tes souliers !Samedi on a fait le marchethon CF avec 1,800 autres personnes et ésperons beaucoup d'argent pour cf. C'était une journée magnifique avec une ambiance superbe. Nous avons choisit 5kms plutot que 10 ou 15 du à mon age, mon pied ou parceque on avait faim et il y aviat plein de bonnes choses à manger toujours au bénefice du cf. Alors on était obligéé de manger beaucoup. On pense tous les jours à toi on t'envoie plein de bisous tante Linda et Nath

Sarah Milne said...

Keep fighting Em. It must be so so hard for you. I wish we could all do more to get you those new shiny lungs you deserve so so so much. All we can do is keep hoping and praying and you know that so many people are doing just that every day.
Loads of love and hugs
Sarah xxx

Anonymous said...

Hi Emily,

I am hoping and praying that no news means very good news for you (and I have a great feeling that it does). We are all rootin' for you and waiting for the announcement that you finally got the call! So just you hang on in..........You are always in our thoughts. Alors, courage petite fille.
bisous, Janet

Anonymous said...

I love the way you tackle this head on, i'm sure that determination will carry you on right to your transplant. I hope it comes very soon. you have taugth me a valuable lesson, I will never take my life for granted, it is for living! I know what you mean when you say you are doing fine. People ask me how Grace is all of the time, and I say 'oh she's fine' I don't know why I say it, but sometimes its just easy.

Keep going girlie, and fingers crossed it will be soon

Love MoO xx