We Can Adjust The Sails

My Pulmonary Hypertension consultant is on maternity leave.  I’ve not seen her for nearly a year.  She took over my care when I was diagnosed with PVOD (Pulmonary Venous Occlusive Disease), and so we’ve been through a lot in a few short years.  She arranged for me to be rushed onto the transplant list when I was deteriorating.  She had the brainwave to involve a clever respiratory professor who unexpectedly stabilized my condition.  She made the brave decision to pause me on the list when I miraculously improved.  I trust her.  And I like her.  She listens, she treats me as an equal partner, and is genuinely thrilled that I’ve not died on her watch! 😛  So it’s been an odd twelve months without her in-charge of my care.

A good working relationship between a patient and a consultant is crucial.  My life is literally in their hands.  Their decisions, their views, their knowledge decides my outcome.  This fellow human becomes the guiding light in my medical journey.  From chatting to fellow PHers, I know that we all differ on which doctors we prefer.  Some patients like one who will take the lead, give instruction, ooze arrogant confidence.  But maybe because of my Type A personality ( 😛 ), I like to work as a team (or at least as their deputy! 😉 ).  Both of us making joint decisions at every crossroad, both taking responsibility to look out for scary predators, both holding the torch which shines the light forward… together.

Over the years I’ve met many doctors, with many different personalities and many different ways of interacting with their patients.  Unfortunately I have had a few that have not ticked my boxes.  The GP who dismissed my concerns for years until I was almost dying.  The doctor who would get defensive and slightly aggressive, whenever I questioned him.  The consultant who thought I was being lazy as I wasn’t improving (turns out it was PVOD).  My pet hates are those that don’t believe me or don’t listen.  Those that belittle me or hate questions.  Those that are disorganized, or don’t remember me from one appointment to the next, or just don’t seem to care.  Thankfully, for the handful of doctors that let the side down, there are many many many more wonderful ones.  The GP who referred me to everyone he could think of when I was first searching for a diagnosis.  The consultant who treated me with great compassion and kindness when he told me I had PH, and then later PVOD.  The nurse who arranges for me to come into hospital that very day, whenever there is a problem.  I am so thankful to have met some fantastic doctors who think outside the box and are pro-active.  Who are completely honest yet remain ever positive.  Who trust that I know my body, value my views and always give answers.  With my wonderful PH consultant on maternity leave, for the past year, I’ve been looked after by two clever heads of PH.  And it’s been a little unnerving.  Although they are incredibly knowledgeable about PH, they’re not so knowledgeable about me.  Having only previously followed my care from afar, they don’t know about my illness.  They don’t know the idiosyncrasies and strange features of my version of my PH.  They don’t know the cycles of my body throughout the year, nor which problems keep reoccurring.  They don’t accurately know my baseline, nor how much my body can and cannot do.  Consistency of doctor is so incredibly vital.  Consequently over these past twelve months, I have had to take a greater lead in my care than normal.  And as neither has sole responsibility, on occasion things have slipped through the net.

In April, I had an appointment with the transplant team at Harefield Hospital.  At the previous appointment, they pondered reactivating me on the active list, so needed results from a barrage of tests to make that decision.  In the absence of my normal consultant, I personally arranged and chased and pestered to ensure everything was completed on time.  Yet come decision day, it transpired that the Brompton had not put forward their recommendations about whether I should be listed again or not.  My transplant consultant and I, had to make the decision together.  With no input from my PH team.  It freaked me out.Although I am the expert on me.  Although I have a fairly good grasp of my conditions.  Although I want my opinion and thoughts to be heard and valued… I also want an expert watching my back.  I want someone with more medical knowledge, more training, more generic experience of the diseases, to decide with me.  I don’t want them to choose alone, I don’t want me to choose alone… I want to be part of a team.  Joint judgement, joint responsibility… joint stake in the outcome.  And so I was freaked and confused and upset and angry that such an important decision, was being left to little me.  After a week of dilly-dallying, and debating whether to… I complained to my PH team.  They agreed that they were at fault.  So although it has taken a couple of months, my two PH consultants have now jointly -and finally- concluded that I should remain paused.

So I’m still deactivated, halted, waiting on the side-lines.  Same decision as I made.  But although my complaint has not changed anything… it has changed everything.  I now feel confident and relaxed and happy about gambling for longer.  I feel at peace.  Sometimes you just need someone to whisper in your ear that you’re doing the right thing.  Sometimes you just need a little reassurance to make the worries fly off the shoulders.  Sometimes you need a back up crew or someone standing besides you.  Sometimes you don’t want to make the big decisions alone.

My normal PH consultant is coming back from maternity leave next month.  I’m looking forward to sharing the torch again. 🙂