An Unexpected Loop on The Transplant Rollercoaster

I wasn’t expecting it to be an interesting hospital appointment. Just a routine check-up at Harefield. A myriad of tests, chips for lunch, hours of filling time in the waiting room, before a “Hello, keep plodding along” from the team. Same as normal, nothing controversial; so I travelled down alone. When I last chatted to my coordinator before Christmas, she raised the issue of downgrading my status on the transplant register. Instead of being paused on the active list, they were pondering moving me over to the “wait and see” one instead. The list of people who don’t need a transplant imminently, but will in the long term. So I was expecting that conversation. I even told the folks in my shared ambulance that I was changing lists, as we chatted in the dark (5.30am pick-up! 😩).


So I completed my myriad of tests. I ate my chips for lunch (and a yummy chocolate doughnut). I spent hours sitting in the waiting room browsing holiday cottages on the internet, and listening to my Judy Murray audio-book. And I got a “Hello” from the transplant consultant. But then the script changed. Turns out the morning tests had revealed a decline in the gas transfer within my lungs compared to August (my TLCO score have reduced from about 40% to 35%). Turns out Harefield were worried about my recent “tiny lungs” issue and concerned in case it is actually due to a deterioration in my Pulmonary Venous Occlusive Disease. Turns out they were pondering reactivating me on the active transplant list. Bummer. I wasn’t expecting any of that.

The doctors were and are uncertain about what to do next. They’re undecided about the best course of action. Should they reactivate me on the active list, or keep me paused… they just don’t know yet. At this stage there are too many unknowns and questions, and not enough surety and facts, to allow them to make a confident decision. Are my increased symptoms and lowered TLCO score due to my PVOD? Or are allergies or something entirely different to blame? Can my breathing and lung functioning be improved with medicines? Or are they un-treatable and set to decline further? Due to the extreme rarity of my condition (1-in-50 million), there are few others to compare my journey to, limited knowledge about how my condition presents and develops over time. And as transplantation is a ticking time-bomb, my team don’t want me to have new lungs until they’re certain mine are declining. So the doctors need results and statistics and numbers. They need answers and information and facts. They need to be able to make an informed choice. Cue tests, tests, tests! So over the next few weeks I’m going to be prodded and scanned and poked again. I’m going to be monitored and x-rayed and stabbed again. I’m going to run on the treadmill, have dye injected into my body, and breathe in funny gas again. I’m even going to have wires stuck in to my heart! ( πŸ˜› ). Hopefully we will then have a clearer understanding of what is happening, and the choice of “to reactive or not” will be an easier one to make. Decision day April 10th.


So I held it together in the meeting, but then escaped to the helipad field to cry. Shock and surprise. Sadness and sorrow. Worry and anxiety. As I sat on the bench and watched the wind blowing the trees, I mourned the potential end of my stability, the loss of my peace. A weight slowly anchored itself on to my shoulders. My mind became clouded with questions and thoughts. It had been completely unexpected. I hadn’t foreseen this latest loop-the-loop on my transplant rollercoaster -quite the opposite in fact. I wasn’t mentally prepared. Suddenly I had gone from worrying about kitchen tiles to worrying about staying alive. From stability to insecurity. Keeping sane whilst navigating the rocky seas of chronic and terminal illness requires psychological work. Yet as I hadn’t anticipated that conversation; I hadn’t thoughts about it, or processed it, or accepted it ahead of time. I hadn’t done any ground work to help me cope. I was suddenly facing the unknown again, making a difficult decision again, gambling on my life again… all out of the blue. I was being reminded that my path through life is no longer easy and straight-forward, signposted and lit with lights… but is instead through a dark wood, where few have trod, with frequent forks, and no footprints to show where to go. I needed to sit outside and think for a while. I left Harefield drained.


The next day, I stayed in my PJs, wrapped myself in a blanket and processing my thoughts. I accepted uncertainty as the new status quo. I started imagining life back on the list again. I made peace with the new situation. So I’m ok again. Calm. Ready to cope with the tests and doctors’ appointments, and the indecision. Ready for the roller-coaster of the next two months. I have all of my fingers crossed that my PVOD is not deteriorating, but that my increased breathlessness and lung problems are merely due to my usual winter blues. Since diagnosis, I’ve physically struggled during the cold and dark months… before shining again with the emergence of the spring sun. I’m hoping for an action replay! But if not, and I need to be live on the active transplant list once more, then I will gratefully do so. I just want to give myself the best chance to break even with my English Heritage life membership!! πŸ˜‰

Early Spring is one of my favourite times of the year: planning this year’s crops and planting the seeds. So although I have some busy weeks ahead at hospital, I have plenty of gardening fun planned too! I’m hoping both my lungs and tiny tomato plants will grow and thrive as soon as the warmth of March arrives. πŸ™‚seedling-sun3559239747297184581.jpg

2 thoughts on “An Unexpected Loop on The Transplant Rollercoaster

  1. Hang on in there Sarah, I find an β€˜ordinary’ outpatient appointment exhausting enough, let alone one like yours! I hope Spring brings the improvement you need. Xx


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