Friday, February 05, 2010

“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 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.


Molly said...

Great blog Emily.

Moll x x

Anonymous said...

beautifully written Emily
- you really should start that book!
Love Lindy xxxxxx

Dawn said...

Greatly written Emily!! Articulates my thoughts and emotions exactly :) Before transplant the transplant team are very frank about the risks. But when your facing death, many people will take any chance to maybe have a better quality of life. Life is full of risks everyday, and transplantation is a big one, but well worth taking just incase it does work and you get a chance at living those dreams :)xxxxxxxxx

Alice Vogt said...

excellent post. My thought exactly. Apart from Jess, I lost another friend here in SA 5 days after her tx due to complications. And the worst was she was so much "healthier" than I was going into the op. I really thought there'd be NO WAY she'll have anything but the perfect outcome. I also feel guilty sometimes for being so lucky. But if I ever needed another tx of sorts I'd do it all over again, risks included.

Anonymous said...

As a parent of a very brave young girl who is at present facing a very difficult time, your beautifully written words bring hope and thats what we all need to see us through the dark times. Thank you so very much for being an example of what is possible.

Unknown said...

If you don't publish your blog then it will be such a shame. You write in a beautiful tone. It never ceases to amaze me how emotional I get from ready what you write. I'll buy your book!

Anonymous said...

Sometimes hope is all a family has and even when that hope doesn't come to anything it has given enough to keep living joyfully the last of their family life together.
That's more than enough.

Keep fighting beautiful lady.

Anonymous said...

Made me cry :)

Audrey xx

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