Throat Spasms -Will I Be Kicked Off The List?

I remember the first time I felt like my throat was closing up.  One Friday night, back in 2005, Phil and I were sipping red wine and listening to some Damien Rice songs.  Suddenly I felt strange.  My throat had closed up.  Literally in a second, my  throat had sealed shut, and my next normal breath couldn’t happen.  Fear, complete fear.  I sat upright, panicked eyes wide open, and tried to force my body to breath.  But with each big gulp, with each unsuccessful attempt, I could only feel my throat tightening further.  Every time I tried to take in air, my throat whistled and wheezed , as if something was restricting the windpipe.  Phil whacked me on the back, thinking I was choking on something.  After mere seconds, that felt like minutes, my throat started to loosen, and I could take a small breath.  Five minutes later, it was as if nothing had happened.

In the decade since that first incident, I have experienced the same thing about ten times.  There is no pattern, no connection, no triggers commonplace for each episode.  I will be happily going about my life, before my throat suddenly starts to close.  Eating lunch, chatting to Phil, drinking tea.  It’s happened when I’ve been stressed, relaxed, happy, sad.  Once my throat closed when I was mid speech, teaching a class of five year olds.  Their eyes panicked at the sight of their teacher red faced and wheezing.  I had to try and stumble out the room, so they wouldn’t witness it.  Over the years I’ve learnt that if I try to take big or sharp breaths in, then it will make it tighter and prolong the episode.  Panic and anxiety also exacerbates it.  Instead it passes quickest when I relax my shoulders, breathe out slowly, take small tiny breaths in.  Following these rules means it’s over within half a minute.  But it is easier said than done.  Once I was so full of fear, my head screaming that I was about to die, that I dialled 999.parmley_laryngospasmInterestingly, my Mum also suffers from the same condition.  She often experiences it when asleep at night.  Waking up being unable to breathe sounds incredibly frightening!  Neither of us have ever spoken to a doctor about it.  It happens so rarely to me, that I’ve never felt the need to report it.  It is one of my little oddities.  However after a particularly scary incident in 2015, I turned to Dr Google, to glean all the information I could.  Apparently during a ‘Laryngospasm’; the vocal cords spasm, temporarily blocking the airway.  It mentioned that it can be dangerous if anaesthetised, or when coming off a ventilator.  However these weren’t situations I was likely to find myself in.  But then I got put on the transplant list.  And a transplant means an operation and a ventilator.

I have been on the transplant list for six months now.  And for six months I’ve had a niggling worry about my throat spasms.  Would I have one on the operating table?  Would it kill me?  Would I have one whilst trying to come off the ventilator?  Would I panic in my semi-conscious state and make it worse?  Part of me felt that it was best to talk to Harefield about it, they could reassure me, put precautions in place to stop it, or be alert and prepared if it happened.  However every time I spoke to them in person or over the phone, I wimped out of discussing it.  Why?  For fear that they would take me off the transplant list.  Transplant organs are precious.  They can only be given to people who are healthy in every other way.  At times during the assessment process, it felt like they were looking for reasons to reject me.  Would they deem my throat spasms too dangerous to proceed?  My life can only be saved by a transplant, so being taken off the list would be the end for me.  Final.  Therefore should I take the risk and report it?  I have spent the last six months being confused, scared and unsure what to do.  Not wanting to continue like this, I decided I would bring it up at my next appointment, and face the consequences.  we-do-not-fear-the-unknown_blog_800px_lr2Every three months I have a pre-transplant meeting with Harefield Hospital, either over the phone, or in person.  The usual hour journey took double the time: dense fog on the motorway had already caused a couple of crashes by the time we left at 7.15am.  We are becoming familiar with the hospital; its appointment routine, and its layout.  Firstly 8 vials of blood were taken, to check for newly developed issues with antibodies or major organs.  Then MRSA swabs, basic height and weight measurements (I dieted the week before!), blood pressure readings, and oxygen level recordings.  Afterwards I was given a list of tests to be done, dotted around the hospital.  There were no booked slots, so I could choose where to go when, just joining the queue in the waiting area of each department.  All of the tests were ones I regularly have: Heart echocardiogram, ECG, Full lung function test, and Chest XRay.  Happily, the results were fine, nothing untoward was reported.  My lungs are still functioning at 30%, and my heart is coping well despite all of the difficulties.

Lastly, I had my dreaded meeting with a transplant doctor.  After the basic pre-transplant discussions, I put on my brave face, and mentioned my throat closing.  And she didn’t laugh at my fear of having a spasm in theatre or whilst on the ventilator.  And she didn’t freak and throw me off the list.  Instead she was lovely; understanding and kind, and talked it all through with me.  She explained that I would be on a ventilator throughout the operation.  A hard tube inserted down my throat, that nothing would be able to close up.  If I had a laryngospasm before the tube was inserted, then they would perform a tracheostomy, cutting open my throat to insert the tube, bypassing the part closed up.  Either way, allowing me to breath.  She reassured me that their surgeons and staff were highly trained, the best; used to dealing with difficult and complex cases every day.  If I had difficulty getting off the ventilator, then they would try again, and again, until I could do it.  She wrote it in my notes, so the anaesthetist and team would be aware, when my call hopefully comes.  I instantly felt relieved and relaxed, a huge weight had been lifted off my shoulders.  By talking it through, I had been reassured.  I slept well that night.

Yes maybe it was an irrational and silly fear.  I’d not been worried about the pain of the operation, having another person’s lungs in my body, going to sleep.  Instead I was focused upon something that might or might not occur when I would be unconscious and unaware that it was happening.  Sometimes you can be so blinkered by your fear, that nobody can make you see how silly it is.  Phil had tried to reassure me that I’d be alright if it happened in the operating theatre, that they wouldn’t take me off the list.. but I couldn’t relax until I’d heard the words from a doctor.  In the end, I had six months of niggling worry, that could have been avoided if I had faced my fear and discussed it with them last June.

Happily I haven’t had a throat spasm for 18 months, so I have everything crossed that I won’t have one if I get called for transplant.  But if I do, I trust that the team know what to do, and will help me.  As the doctor pointed out: ‘The lungs we give you are precious Sarah, so the surgeons will do everything they can to keep you alive!’  🙂

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