We Can Adjust The Sails

Before I was put on the lung transplant list, I didn’t really know anything about it.  I had no reason to.  I had a couple of Facebook friends who’d been through the process, but that was the extent of my knowledge.  At the time of signing up, I hadn’t really thought in much detail about what was ahead.  I was preoccupied with the awful pressure of trying to get accepted as quickly as possible.  I knew I would have to be in Intensive Care for a long while (which freaked me out enough) but hadn’t anticipated any more about my recovery.  I had no idea of what it would be like to heal after having your lungs replaced, I had no idea of the problems I might face.  But then I started researching it…

Since becoming listed at Harefield Hospital, I have entered the world of transplant.  I have had to.  As part of the process of accepting what is happening and what is to come, I have needed to fully immerse myself in that realm.  I have joined a couple of transplant groups on the internet, read blogs written by people about their recovery, researched the operation.  I have enjoyed books written by folks who’ve had transplants, befriended others who’ve been through the journey, and through Facebook groups I witness the daily battles of newly-transplanted acquaintances.  But by diving head first into that world, I have had my eyes opened to issues that hadn’t previously crossed my mind.  Therefore is it better to know in advance what could potentially happen… or go into it with eyes closed?Before I signed up I had no idea about the hallucinations- a common side effect from the very powerful drugs initially given.  I had no idea that I would spend the first few weeks watching giant rabbits or grim reapers walking around my room.  I had no idea that I’d imagine events or conversations.  Or that I’d be certain that I’d seen the porter stealing my lunch, certain that the nurses were singing karaoke in my room, certain that the doctors were plotting to kill me.  I’m sure my daily imaginings will provide much amusement afterwards (Phil is going to keep a diary 😛 )… but I’m certain it’ll be less pleasant for me at the time!  I’ve never hallucinated before- my closest experience is watching others in scary movies.  And the classic, awful, upsetting ‘baby on the ceiling’ scene in Trainspotting, still freaks me out every time!  I just hope I imagine nice things running around my room… like friendly beagles!

And as mad as it sounds, it hadn’t even occurred to me that I would be in any pain!  It just hadn’t occurred to me.  So it has been a shock to realise that my ribs or sternum are going to be broken open to get the new donor lungs inside me.  How I thought my old and new lungs would get past my rib cage, I don’t know.  One of my lovely PVOD friends had a transplant five months ago.  In the first few weeks her daily reports of the awful pain she was in, made me cry for her, and cry for my future self.  I have never broken a bone before, so have no idea of how it will feel.  Therefore I can only rely on other people’s recounts.  And those updates from my friend have shown me that healing from a broken chest is terrible.  I really hope the painkillers are effective!

I also hadn’t really thought about the ups and the downs.  I knew that it would probably be a bumpy road for the first couple of weeks, but I’d not thought about why, or what problems I might encounter.  But by entering the world of transplant, I’ve learnt of the many different issues that may arise.  Seesawing drug doses, fighting acute rejection, re-learning to swallow.  Elevated blood gases, kidney failure, collapsed airways.  Difficulty coming off the ventilator, wiped out immune system, post-traumatic stress disorder.  So many bumps that I’d previously never thought about, never considered, never realised I might be facing.

So is it better to know ‘nothing’ or ‘everything’ about the potential problems after the operation?  Is it good that I have fully immersed myself in transplant world, and therefore have learnt lots about what may be ahead?  Or should I have shielded myself from it all, and remained naive to what may be in my future? For me, I’m glad my eyes have been opened.  I’m glad I know what I do.  Yes, discovering new information does sometimes cause tears and stress.  Yes, reading something scary does occasionally keep me awake in the early hours.  But it is always temporary.  The worries and concerns and distress always pass.  Within a day I have processed it, accepted it, and moved on.  Besides, I am well aware that most of these distressing tales won’t happen to me.  Everyone will have one horror story after such a big operation, but no one’s horror story is the same, no one’s recovery is the same.  I will probably face a few battles, but the majority will remain as others’ stories.  Unconnected to my recovery.  I’d be incredibly unlucky to suffer from every complication that I’ve read! 😛  Besides, the horror stories I’ve heard have come from people who have survived.  People who have got through the recovery.  They all had their problems, their nightmares, their traumas in the first few months… but they got through it.  Yes, not everyone will survive, but the majority initially will.  Whatever bumps are ahead for me, someone else will already have been there and got through it.  And I will hopefully too.

For me, I’m glad I have immersed myself in the world of transplant.  I’m glad I have read so much.  I now feel more in control.  I have been able to plan ahead, to think of practical coping strategies, to research solutions to some of the potential problems.  Vests have been bought as bras rub on the scar, and front-opening pyjamas packed so I can more easily dress with wires everywhere.  Painkillers will be reduced if hallucinations are difficult, and whiteboards conversations will be had when on the ventilator.  I have also been able to prepare myself emotionally, to psychologically plan.  I have done calming exercises imagining myself in these situations, given myself pep talks, and accepted that my recovery will unlikely be completely smooth.  I feel calmer now, and hopefully will also feel calmer if facing these battles later.     Six months ago, my friend with PVOD was living in hospital, unable to return home due to her high oxygen needs.  Everywhere she went, she was followed by enormous noisy oxygen canisters.  But then she was gifted new lungs.  She has had more than her fair share of bumps since… but her recovery encourages and inspires me.  In the months since, she has ventured into the Yosemite mountains, paddled along the sea front, enjoyed parties with her family.  Her life has changed unbelievably.  Since becoming part of transplant world, I have heard many scary anecdotes… but I have heard far more amazing tales of life with new lungs.  And that is the main reason why I am glad I have entered this world.  I love being exposed every day to fabulous photos and posts and blogs about post-transplant life.  It is these emotional and exciting tales that keep me waiting and hoping for my turn.  It is these inspiring and encouraging stories that make me believe that the bumpy road ahead will be worth it in the end.  🙂