We Can Adjust The Sails

I arrived at Harefield in a bright mood.  The sun was shining, I’d spotted ten Red Kites en-route, and had met a friend for lunch beforehand.  Moreover with my recent positive test results suggesting stability, I was confident I wouldn’t need to be reactivated on the transplant list just yet.  But four hours later, I left feeling glum.  The consultant had burst my bubble.

At my last Harefield appointment in February, seemingly out-of-the-blue, the doctor had suggested re-activating me on the lung transplant list.  I’d been paused for a year, after unexpectedly stabilizing.  However over the winter my lungs had become super reactive, my daily functioning had declined, and the gas transfer in my lungs (TLCO) had worsened.  After discussion, we had decided that I needed to complete a hoard of tests, to establish whether my PVOD was deteriorating.  Initially I assumed I’d need to go back on.  But then as the weeks and weeks rolled by, it started to look less of a sure bet.  The majority of tests results were indicating stability, my hypersensitive lungs were becoming less hypersensitive, and my daily functioning had improved once again.  By the time of my Harefield appointment in April, I’d done a 180.  I was now convinced I would remain paused.  Convinced.  Certain.  I told everyone.  Then amazingly on the morning of my Harefield appointment, test results showed that my lungs’ gas transfer had returned to its normal level.  The only recent assessment to have declined, had now righted itself and was showing stability once again.  Elation.  Now it seemed like an open and shut case.  My happiness was sky high.But my appointment with the transport consultant didn’t quite go as I expected.  I arrived cheerful and happy and full of smiles.  Gleefully announcing that I should remain paused.  Maybe the consultant thought I was in denial about my predicament.  Maybe he believed I was unaware of the facts.  Maybe he wanted to shock me, or wake me up, or once again make me look into the eyes of the beast I was facing.  But he proceeded to shoot me down.  Turns out the decision to stay off the list wasn’t as indisputable as I assumed.   He reminded me that the prognosis for PVOD is dire.  He reminded me that I should have declined already.  He reminded me that no doctors have a clue about my prognosis as I have a very rare subset of a very rare disease, that is acting in a very very unusual way.  And in case I’d forgotten ( 😛 ), he then pointed out that my only two options are crap. 😦  I can go on the list immediately, and have the operation shortly… but with a significant chance I’ll die during it (apparently PVOD’ers are more likely to bleed out… that was a bit of new news! ).  Or I could gamble and stay off for longer… but with a significant chance I’ll become too ill or weak to have the operation.  He pointed out that he would be unable to save me if I declined quickly.  He pointed out that he would be unable to save me if I bleed out during the operation.  In summary, both options are as bad as each other… so the decision to reinstate me or not, wasn’t that simple or easy to make.  Gees.

I tried to counteract the negative message as much as I could.  I talked of stability and ECMO and the country wide super urgent list.  But every time I tried to find the positive, look for the shine, think of a solution, thwart his argument… he brought me back down to Earth with a thud.  Giving me the bare cold facts in all their horrific glory.  So after a thirty minute pummeling, my bright mood was extinguished, my positivity squashed, and my hope trampled upon.  My bubble had truly been burst.  I dissolved into tears.Life with a terminal illness is hard.  Really hard.  There are so many vultures circling overhead, so many black clouds, so many ticking time-bombs.  Each creates fear and terror and distress and worry.  If I was to imagine only this doom and gloom for my future, then I’d soon drown in my own tears.  If I was to picture only the pain and loss to come, then I’d never leave my bed.  If I was to accept that the worst case scenario is what lies ahead for me, then I’d hide under the covers, petrified of each passing day.  PH and PVOD would not only be stealing my future… but would be stealing my present too.  By dwelling on the worst of tomorrow, I’d miss out on the best of today.  So my coping mechanism and survival strategy is to always hope for the best outcome.  I search out the stars or sun in all situations.  I look for the positive in everything.  I choose to focus on the brightest parts of my life; both in the now and in the coming.  I’m not denying the bad and the sad and the scary, I’m not putting my head in the sand.  I know the facts about my future, I know my odds of dying.  I know I won’t make 50, and maybe not even 40.  I chat about death in normal conversation.  I ask and worry and cry about what lies ahead.  I acknowledge the bad bits, process the bad bits, accept the bad bits… BUT then I search out the good too.  Because whilst there is still a glimmer of hope that everything will work out fine, I refuse to accept the contrary.  Instead I choose to think about and dream about and get excited about this potential future happiness and joy.  Every single time.  So that meeting was hard.  I felt like he was only discussing the worst case scenarios, only envisaging that the scary would happen.  Reminding me and reminding me and reminding me of the circling vultures… yet refusing to contemplate that they could one day just fly away.  Highlighting and underlining the bad odds.  He was taking away my stars and sun.  Yes I had a big big decision to make.  Yes the doctors needed to be sure I remembered the risks.  But that conversation on that day extinguished my tiny flame of hope. 

In the end we could only make a temporary decision about whether I should be put back on the list or not.  Due to a mix up, we didn’t have a report from my Brompton doctors advising us of their view.  However my two hospitals have since arranged an actual meeting to discuss the way forward.  So we jointly decided to keep me paused, suspended, temporarily halted on the active list for a little longer.  No change.

So although I left the room with the decision I expected… I didn’t leave with a bounce in my step, or a smile on my face.  Instead I left with a heavy heart.  His hard talk had knocked me, burst my bubble, flattened my spirit.  I spent the next few days on the sofa cuddling Lottie.  I thought about my two shitty options and dwelled and cried and worried.  But then I slowly clawed myself back upwards.  I began to remember all of the good that is now and all of the good that is to come.  It took a week, but I eventually re-found my positivity and optimism.  I eventually re-found my excitement and happiness about the future.  I eventually re-found my sun behind the circling dark clouds.  And I eventually re-found me.