Monday, 18 January 2010

Musings from an anxious wife

Many of you have been kind enough to ask how I am through all of this; some have noted my relative absence from the blog since the very early days. Will has been encouraging me to post, and I've been wanting to, but it's hard to know what to say when I honestly have no idea how I am or what I'm feeling. This transplant business is hard. I'll try to explain the worms in my head.

My main battle seems to be anxiety: there is always something to worry about. I feel like my anxiety pool is full up and it only takes a tiny thing to make it spill over, clenching my stomach so that I can't eat and tightening like an elastic band around my throat so that I can't breathe properly or even really speak. Anything will set me off: is that just a cough or is it the start of an infection? was that just a little bit of phlegm or was it a wheeze? is it completely reasonable that Will's tired this evening or is this a sign of rejection? is this just a muscular spasm or is his lung collapsing? was that cry from the other room Will dropping dead or did he just fly his plane into a mountain on Wii Sports Resort? I loved a recent entry on parttimeboddha's blog about the worry he felt when his girlfriend, who is two years post-tx, caught a cold. Clearly these fears don't go away.

Although things were hard before the transplant, day to day life was oddly stable and anxiety free. It can sometimes feel tough to have swapped that for this. We knew Will's poor gungy, crackly and exhausted lungs inside out. We knew the rhythm of the monthly nebuliser cycles; we knew good gunge from bad; we knew that when he was shattered and achy we could put him to bed and plug him into his Nippy ventilator and he'd be better in the morning; we knew when it was time to give in to Papworth and the IVs; we knew we had the hope of a transplant ahead of us. Post-transplant, we know nothing except that this is it - there'll be no more new lungs.

Rationally, I know things were going to get worse. Rationally, I know we are incredibly lucky. Unfairly lucky. Some of you read about Victoria Tremlett, who has been waiting for over two years for her new lungs. Or there's Jessica Wales, who went on the transplant list in 2005, when she was just 16. She battled for four and a half years before getting her new lungs just after Christmas, when she was in hospital literally fighting for every breath. She had had nine false alarms. Although things looked good to start with, it was too late for Jess and she died last week. But the unfair road is a psychological road to nowhere. Sometimes I catch myself flirting with it, wallowing in it a little, trying it out for size. After all, none of this is fair. CF isn't fair; it isn't fair that Will and Mitch and Jamie and Ashley and all the other post-transplant CFers out there had to make this choice; it isn't fair that medical science hasn't quite sorted lung transplantation yet. But then I pull myself together, remember that Life Isn't Fair, remember that we are lucky to have had the option of transplantation, remember that we're not in Haiti, remember that no one knows just what the future holds and remember that Will's new lungs are a gift. Sometimes these notes-to-self feel like horrific cliches and make me want to kick things, but mostly they make me resolve to try harder to stay positive and be happy and not worry and be a better transplant wife and be nicer to Will and not lose patience when he's down and to cook him nice meals and wash his socks and clear out the fridge more often so that the bugs don't bite.

And then sometimes, suddenly, it all seems completely and without reservation totally worth it. Like Saturday. We went and looked at a car, then we walked up to the cinema, then went for a burger, then walked home. Then, instead of collapsing in a massively exhausted and deoxygenated heap, Will voluntarily sat up and watched Bridget Jones' Diary through to the end without falling asleep on the sofa even once. And then we got up early on Sunday, packed the smallest overnight bag in our overnight bag history, drove to Will's sister's house, had a lovely countryside walk with wellies and mud and Will raced Billy UP THE HILL. We played with our delightful nephews and niece, ate an enormous meal and sat up until midnight listening to nostalgic music and drinking wine*. This might sound like a completely normal weekend to you. It does to me too and it is fabulous.

So how am I doing? Terrified. Is this the hardest thing I've ever experienced? Yes. Is it worth it? Yes. I'll leave you to judge yourselves with the following photos. This first is a rare photo of Will+oxygen, as delivered by The Monkey, our chugging portable oxygen concentrator. Will was determined to climb this hill in St Ives in Cornwall this summer and I managed to persuade him not to remove the tubes before I took the photo. The second photo freaked us out a little when we looked at it again the other day. It was taken on our holiday in Aldeburgh in July, just before Will went on the list. He really does look ill, doesn't he?! The third was taken over Christmas and is of Will RUNNING**.

* In moderation of course
**Just in case a recent post-txer reads this and feels inadequate, I'd like to make it clear that he didn't run for very long. And it hurt his chest.


  1. A moving blog, Vicky and one that expresses probably only a fraction of what you've been going through. It's still only been three months, you will get used to the new lungs and how far they can run! As you say, it's one new pair of lungs so you have to get on with it and make the most of every deep breath Will takes. For me, on the edges of all the drama, things look so positive, Will looks so well and I imagine the two of you with some wonderful years ahead of you that you just wouldn't have had with the cat food lungs.
    My love goes to both of you and makes me feel guilty for moaning about my very painful but temporary ear infection and partial deafness.
    If a work day ever gets too much I'm always available for a Teri-aki lunch if you need it... xxx

  2. There's nothing wrong with those clichés, I know we can't really understand but do try and enjoy it as things from here seem so much better.


  3. I understand how you feel, believe me. But I look at it like this: Will and Ashley have never in their lives have had much in the way of certainty, yet both seem vibrant and strong and accepting. I don't know about Will, but Ash does go through some fairly dark periods and at that point my job is to put aside my fears and be honest with her. And I say what you say: It's worth it.

    Truth is, we never know what's going to happen next. It's just that most people don't have to make that knowledge part of their daily lives. But, unlike Will and unlike Ashley, you and I and the CF and Tx partners out there have a choice. Most people I've met choose to take the worry as an even exchange for love.

    If ever you need someone to chat with, you can email me at:

    bo dot butler at gmail dot com

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