Smile Through It II: The Next Chapter

Chasing dreams, because I can

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A flare for the dramatic

Posted by Oli on Monday 20th November, 2006

23.01, Sunday 19 Nov

K brings me the phone, which she’s just answered, “It’s Nicky, from Harefield.”

“How are you feeling, Oli?”

“Okay.” Shitting myself.

“Any problems that you know of?”

“Nothing new.” My heart’s just stopped.

“We have a match for you on paper. It’s early in the process at the moment and our retrieval team is on the way there now, but we’d like to get you in. It might be a wild goose chase.”

“Okay.” Okay.

Surprisingly calmly (this being my second call from Harefield since I was listed 18 months ago), I gather my things and K gets un-ready for bed. 20 minutes later, we’re at Mum and Dad’s and squeezing into Mum’s Polo, my bro having borrowed my dad’s nice spacious estate for the week to move his stuff out of his barracks in Canterbury.

It struck me as we sailed down the empty, wind-swept, rainy M1 towards London that this may prove to be the most short-lived chronicle of a run-up to transplant in the history of the blogosphere. Wouldn’t that be upsetting?

We arrived at the hospital about half twelve and Nicky, the coordinator for the night, told me that the retrieval process was just starting and that there would be no news till after 3-3.30am.

The ever-efficient team then set about the myriad tests and odd-jobs the docs and nurses have to do pre-op. In no particular order (it’s somewhat of a blur, to be honest) I had 14 vials of blood taken, a venflon inserted (small cannula in the arm for giving drugs through), height, weight, temperature, blood pressure and O2 sats checked, a chest X-ray, and ECG (heart-monitor thing) and a few pieces of paperwork about me to fill in.

The most wonderful part of the exercise was without doubt the full-body shave and alcohol shower. Wonderful little clippers provided by the NHS did for what little body hair I had above the waist, and there were certain other bits of delicate work to do, too. Followed immediately by a shower using a full-body alcohol scrub like soap. And yes, if you’ve just sucked the air in through gritted teeth, that’s exactly what I did, too. Nice.

Prepped and gowned by 2.30am, we set about waiting. And waiting. It all seems to have passed in a blur now, but it was interminable at the time. As the clock ticked past 4am, I began slowly to unravel from my tightly-wound coil of security and self-knowledge.

Bizarrely, what starting playing on my mind wasn’t the fear of the op itself, nor the fact that I might not make it through. Instead, my mind fixated on what it would be like when I came around and I was enveloped in a fear of claustrophobia should I happen to come around while still attached to the ventilator afterwards.

The thing about anaesthetics and post-operative sedation is that it tends to meddle with your memory. So while you may be fully awake and alert and responsive, you may not actually remember it afterwards. Not remembering means that, to all intense and purposes, to you it didn’t happen. So I became somewhat obsessed with wanting to know at what point I would “wake up” – when my awareness post-operatively would kick in.

It wasn’t until 4.30am that Nicky came back to us, by now huddling close together in the room with everyone trying to seep strength into me. The retrieval surgeons had been in and looked and while, on paper, the lungs looked good, on closer inspection the team weren’t happy with what they saw and decided to abort the retrieval process.

It was a no-go.

It’s hard to describe the deflation of news like that – the total release of tension and relief mixed with bitter disappointment mixed with adrenaline-fuelled exhaustion.

Venflon removed, gown cast off, re-dressed in street clothes, I shuffled my way into a chair for a ride down to the car and the journey home. Arriving back at the flat at 6am, I flopped onto the sofa and did my morning dose of IVs which were now due, then slipped into bed, slid onto my NIV mask and promptly fell asleep.

Looking back on the experience today, after a totally lost morning and an afternoon of bleary-eyed chilling-out, it has been a lot easier to cope with than my first false alarm. All the way through the process I was a lot calmer than I was last time, largely helped y the fact that there were no surprises, I knew the drill and knew what to expect. The deflation, while marked, isn’t anywhere near comparable to last time and the roller-coaster of emotions is much more sedate. Gulliver’s Land compared to Alton Towers, tea-cups to waltzers.

I was interested by my reaction and how my fear manifested itself. the post-operative period has never really bothered me before, but that’s what my mind chose to focus on last night. With hindsight, it’s clear that it was merely the way my brain dealt with the general fear of the unknown, latching on to one element and amplifying it to take control and form a focal-point.

I spoke to Dad this afternoon and he’s already started a book on how many times from now we hear, “Third time lucky,” from people. I’m confidently predicting double-figures.

The best thing to happen today, however, is nothing to do with CF, Transplant, false-alarms or anything else. Suzanne, the practitioner and workshop-leader I work with at MK came over for a cuppa with her hubby this afternoon on their way home from Costco, the bulk-by warehouse and brought with them what can only be described as a VAT of Flumps, the little marshmallow shapes. I haven’t seen proper, official, perfect little flumps for YEARS and I’ve been searching high and low. And now, I’ve got a vat full of them!

It may have been a roller-coaster day, but my flumps will keep me smiling through it….!

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9 Responses to “A flare for the dramatic”

  1. Marjolein said

    Sorry to hear you had another false alarm. I really hope the third time will be a charm (that’s what they say in english right :-)).

    I had my transplant a little more then 3 months ago. I was scared of being on the vent after surgery too. And i must say, looking back, it wasn’t as bad as i thought it would be. It was uncomfortable, but alright. Although ofcourse i was very happy when they could take it out. I woke up about 8 hours after surgery but don’t know anything of that. That first time was early in the morning and i only know from that afternoon on. The vent was taken out the next morning.
    Fortunately i didn’t have any pain, only very little. That was because they put in an epidural right before i went into surgery. That was a little scary but in the end i didn’t feel anything of it and when i woke up i was very very happy with it. Maybe you can ask for one next time?.. So pain is one less thing to think or get scared about..

    Good luck next time!!! I hope you won’t have to wait too long.

  2. Darling said

    Third time lucky eh fella?!! 🙂

  3. Nicola said

    I’m sorry it didn’t go ahead this time,and just so that your Dad can add an extra numer on to the final figure “Third time lucky” 😀

    I’ll keep my fingers crossed for you.

    Nicola x.

  4. Emmie said

    Oh Oli, I’m so sorry to hear it wasn’t your turn this time. I think you are coping amazingly considering what a toll it must be on the emotions to go through these false alarms. Stay strong hun, you will get those lungs eventually! And as for the Flumps…I LOVE FLUMPS!!! May be they should put them on prescription? ;o)
    Emma xxxx

  5. Suze said

    Hiya you – glad the flumps were a hit – I think hubby was hoping that you didn’t like them! You should’ve seen his eyes when he saw them sitting on the shelf!

    Have just heard from a colleague who has read this blog and thinks you’re a star and very good writer – but we know that anyway! She has joined the donor register and hoping to come to the show! Lets see that “third time” coming real soon.

    S&G xxxx

  6. Suzie said

    So sorry to hear it didnt go ahead for you Oli, it certainly takes it out of you waiting to hear whether the organs are suitable, we took it in turns in an effort to keep Chris’s spirits up, but no matter what you do as a family, its still very hard to imagine what its like for you.

    Chris wanted to know what was happening from the minute he came out of the theatre and made us promise to write a daily blog, with photo’s, just in case there was anything he didnt remember.

    Not wanting to let the side down here.
    “Third time lucky” hopefully.

    Take care, everything crossed for you.

    Sue

  7. Emily said

    Nuts.

    Clearly one last dress rehearsal was needed before the real event 😀

    Waking up on the vent was a big fear of mine, but when I had my op last year I had to do exactly that. Whilst I didn’t like it, there was no terror because you are so doped up I think those emotions cant show through. (Didn’t stop me from spelling out “I am sodding well awake take it out” by tracing the letters on my leg when they refused to because I was still coming round though ;))

    2nd call is surely a good sign that those new lungs are drawing ever nearer….got my fingers crossed for you Mr, rest up and get strong ready for the real thing. xx

    ps – had to work so hard not to say “third time lucky” in all of that….doh!

  8. Jac said

    hey
    Sorry to hear about the false alarm..must be an exhausting experience to say the least. I hope you have managed to gather your thoughts, and are ready to face the challenge all over again with the real call!

    I too am anxious about the idea of waking on a vent..mostly because I don’t like the idea of not being able to talk 😉 I’m reassured however by Emily’s reply.

    Take care and enjoy the flumps!
    Jac

  9. Pedro said

    Squirrel,
    Honestly flumps are a potential death trap, well if you try and swallow one in one go – never a good plan. Sounds like its been a bit of a roller coaster ride of emotion. You are a legend. I am learning lots about science, and life too though it did take me a while to figure out that 02 was not a mobile phone network. razor sharp as always. Sister says hello. She wanted to leave a message but the meanies at work means she cant access the site.
    xx

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