We Can Adjust The Sails

I feel like I’ve been on a treadmill for the whole of 2016.  I’ve had to keep continuously plodding along in life, despite having some interesting curve balls thrown in my direction.  Life has not allowed me much time to stop and think, instead I’ve been forced to keep going, to move forward and to battle to get what I need.  This year has been all about advocating for myself.  Battling to get the doctors to do their tests, to get a new diagnosis, to be given oxygen, to get some new medicines, to be seen by Harefield asap, to be accepted on the transplant list.  Asking, questioning, chasing up, reminding, arranging.  Ringing, emailing, ringing, emailing.  The last couple of months in particular have felt like a race: rushing to get the tests done as quick as possible and a decision made.  And then I stopped racing.  I just stopped.  The final hurdle was to get the transplant paperwork signed.  But I stopped pushing.  For the first time I stopped ringing and cajoling and questioning and constantly advocating for myself.  For the first time I sat back and waited for them to come and tell me I was officially listed.  Why?  Well, I’ve had the wobbles.  I suddenly realised I’d not spent much time thinking about whether I actually wanted to be on the transplant list.

Agreeing to have a transplant is an incredibly difficult decision.  To an outsider, it might seem like a simple and easy choice to go on the list, but actually it’s a really tough decision.  It is a choice, that not everyone decides to do when in my position.  Sometimes people weigh up the negatives, and decide against having a transplant.

The positives of having a successful transplant are clear and obvious.  It will change my life.  It will increase my life expectancy, though there is no way of knowing how much extra time it will give me.  Most significantly it will improve the quality of my life incomparably, allowing me to do things that I’ve long since lost the ability to do.  It will give me some of my life back, a glimpse of normality again.

However there are enormous downsides to going for a transplant that have to be considered.  Transplant is dangerous.  There is a chance I will not make it, and the operation might take away my life instead of helping it.  It is a difficult decision to decide whether the odds of surviving the operation are worth the gamble (approx 15% chance of dying during the operation or in recovery).  It is also incredibly daunting thinking about the difficult and long journey to recovery.  Having pulmonary hypertension makes me a high risk patient for the procedure, so I will need to spend a number of months in hospital after the operation, and some of that time will be in the intensive care unit.  It is a big decision to willingly agree to put myself in that position, to willingly sign up to be so ill for a while.  To willingly go from being able to breathe myself and able to walk a little… to needing to be helped to breathe with a ventilator and being stuck in bed.  Having experienced a weak and helpless episode when first ill, this is the most frightening thought for me, as the post transplant recovery will be more extreme and so potentially more terrifying than what I experienced previously.

Then after the operation and recovery, there are further downsides to transplant.  Transplant is not a cure.  I will never be free to live my life like I did before.  Restrictions will be placed on my life post transplant; foods I cannot eat, activities I cannot do, jobs I cannot have.  Although it will stop me suffering from my numerous lung diseases, I am merely swapping these to become a lifelong transplant patient.  I will forever need to be under the care of Harefield hospital.  I will still be reliant upon a careful balance of powerful medicines, with difficult side effects, that can cause me to develop secondary conditions like cancer and kidney failure.  Furthermore, my new lungs will not last forever, so at some point in the future I will probably face similar breathing difficulties again when my body starts to reject my new lungs (approx 10% chance of death each subsequent year).  Therefore by having a transplant, am I just postponing the inevitable?  Is it worth going through a scary ordeal, just to give myself a couple of extra years.

I needed that pause of a few weeks.  That break between the decision being made to list me, and being officially put on the list.  I needed to think about what I was signing up for, to make the decision, without being continually pushed forward or forced in to it. I needed to be certain in my head that I had made the right choice by weighing up all of the negatives and thinking about the scary bits as well as the exciting parts.  I needed to picture being wheeled in to theatre, and literally putting my life in to the hands of someone else.  I needed to imagine myself waking up in ICU with a breathing tube in my throat.  I needed to think about learning to breathe, talk and walk again.  I needed to process it all, and then make a personal decision about whether it was something I still wanted to do.

Happily my decision is to still go ahead with being on the transplant list.  The potential life I could lead after transplant is an amazing and exciting dream that I believe outweighs everything that I will have to go through to get to it.  I’m obviously still scared about the operation and recovery, but I will endeavour to use my butterfly list, and my hopes for my future life, as strength to get through the hard times.  So I’ve now been officially listed for one week, meaning the call for transplant could come at any time in the future.  Every time the phone rings, my heart does a nervous twitter until I know it is not the hospital calling!  Part of me is excited and wanting the call to be them, but a bigger part is nervous and happy when it is not.  However I’m sure as the weeks go back, I’ll get used to the wait and will no longer answer each phone call to my house with a scared “hello”, but will instead really want the call to be Harefield.

I’ve returned to Harefield to have a final discussion and sign some forms.

I’m really glad I gave myself that chance to have a breather, to distance myself from the urgency, and make the decision without being forced or rushed.  Making the decision independently gives you back your power.  I will go in to that operating theatre knowing it is the best option for me… and an option I WANT to do.