Rejection
I am familiar with the pain of rejection: when it comes to the heart that is. That ache that cuts deep, leaves you gasping and often sobbing at the cruelness of life, of choices so often his, not yours. You know well the feeling of abandonment: the sudden silence of previously chattering communication channels and the phone screen now blank; no new messages, no missed calls. I’m no stranger to desolate feelings of rejection when it comes to break-ups but for my body to reject my new liver? That‘s Rejection with a capital R – an entirely different order of magnitude, of uncertainty and of fear.
Tiredness, or more particularly fatigue, is a constant feature of my existence: an old friend or more accurately really a foe, it haunts me tirelessly. I go to bed tired, medication often keeps me awake for hours but even if I can sleep, I awaken still tired. I nap, I wake, I nap, I wake. . . I’m still exhausted. Doctors and consultants tell me this is par for the course and a continuation of the autoimmune disease issue along with my recovery from the operation. Now, however, comes a call that suggests there may be more to this: it’s more serious than they first thought.
The call comes on Sunday. I’m standing at the foot of my bed, my hand-me-down double bed, the one my Mother didn’t want me to have and I’m folding my underwear Marie Kondo style so that it stands erect in my knicker drawer. My phone screen says, ‘Unknown Number’ and as always in response to an “Unknown Number” am hesitant to pick up, nevertheless I do so. There is silence, a pause even and then, “Hello? Is Lucinda there?”
“May I ask who is calling?”
“Dr T from the Royal Free”.
“Oh yes, it is me.”
I can’t remember her exact words now, words that tell me my test results show a deterioration in my liver’s condition. Words come, a relentless stream, many uncomprehended spilling out across the wires and then. . . suddenly, clearly, the scary word, ‘rejection’.
I take a deep breath, really taking care to make sure I fill my lungs and then slowly expel the air. I can’t pretend I’m not scared, I am scared. I don’t know how scared yet but I am. “Don’t panic! Don’t panic! Don’t let the anxiety you feel bubbling beneath the surface rise and overflow!” I tell myself.
If there is one thing that I’ve learned on my illness journey, it’s that you only have the now. You cannot change the past. The future is beyond your control, so what you have is the now and how you choose to respond to it. Negativity increases negativity, positive thoughts increase positivity. Anxious thoughts can multiply into full-blown depression.
“Keep calm” I tell myself, “and don’t panic” . A voice of reason, of calming words is trying to keep me from disintegrating into fear and all of its darkness.
You don’t fear what you can understand or know about, it’s why the best horror films are the ones where you never see the creature. As soon as we can see the mottled scaled khaki green and brown skin or the teeth pointed and gleaming, we know it’s not real and the illusion is over. It’s the stories where things hide in the shadows or can’t be seen that hold the power to chill.
Rejection is rejection. I’ve skimmed over it somewhere on the internet, but as someone who believes strongly in the ‘Laws of Attraction’, I have in no way Investigated it further. For that reason, it is as terrifying as can be imaginable in a film of horrors. The fact it is happening deep within me with as far as I can see, limited artificial surface effects is so similar to something about aliens it’s unreal, and let’s be honest, I am pretty much in denial about the fact I have half of someone else’s liver inside me at the best of times.
I ask what happens next.
My medication will increase, just the Tacrolimus (immune suppressant) for now, to four in the morning and four in the evening. I will go back on Thursday for a blood test, hopefully, an ultrasound, and to see a consultant. If this isn’t conclusive then they will need to carry out a biopsy.
My heart sinks lower. I had a biopsy many years before. It wasn’t pleasant. Not as painful as the bone marrow they took but that was like someone scraping away at my soul so really not comparable to any other pain.
There is nothing else to be done. In my head, I am logically working through options, how things will or could play out, but when it comes to something like this there really are no guarantees of anything, so planning or worrying about planning is a moot point.
When you live at home just with your parents, and due to your health don’t have many friends or much contact with the world in person, when something like this happens it can feel overwhelming. I feel overcome. I dread telling my parents. We have come so far, and now this? It’s like being told you have passed a test and then you haven’t. You have won the war, and then you haven’t.
My father is out but my mother sits writing in her diary eating her daily porridge and I drop my ‘rejection’ into conversation with a similar tone to that which I might use to say I was going out for milk.
She looks up and her features cloud, her brow creasing, her writing ceases, the lime green Lamy fountain pen poised mid-sentence and I feel in that small moment that she does care, and love me.
“But… they can sort it out?”
It’s hard to reassure others when you aren’t reassured yourself, but it’s a necessary act and I do the best I can for both of us. Like two sailors adrift at sea I push across a life ring and help her into a life jacket. My hope will keep us both afloat for a bit.
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The next thing is social media.
My status is straight to the point, honest and yet, I hope, not bleak. Life is life and some of it can’t be sugar coated, although as I type the words I know that I am physically tattooing the truth of my situation on to the internet’s wall of history. I say a silent prayer that next year I look back on this and will smile. Facebook does it seem, at least serve a helpful purpose in being a diary of life events, reminding you a year later what you did and where you were.
Everything happens for a reason you see, and this is happening now, because it should, and things need to be done, and achieved and life is too short not to be reminded of the precious nature of existence. How fragile it is. How little time we have, and still so much I have to do.
Tuesday arrives, and we arrive earlier than normal in Hampstead, with me quietly hoping that the queue for blood will be smaller. Unfortunately, the queue snakes out of the waiting area and down the corridor, growing in size rather than ever getting shorter. When eventually I arrive at the desk I seem to have fewer stickers for the blood vials than normal so taking a view on the number on the screen, 247, my ticket number of 336 I do a rough, hugely inaccurate calculation based on 10 minutes of people in and then decide to go and visit the liver transplant coordinators with the biscuits I have for them. It was the transplant coordinators I had spoken to midway through last week after the news, and it was one of them in particular who had helped to explain again the situation and what ‘rejection’ means to them.
I don’t know how much is placebo effect, anxiety or hepatic encephalopathy but I struggle to understand and interpret what the transplant coordinator said. This is what I think was said but my accuracy is questionable.
“They take blood and then the bloods come back, and the doctor evaluates… There are various stages of rejection and the ultrasound is going to see and look to whether there are blockages in the veins and arteries flowing into the liver.
The ultrasound gives a visual picture of what is happening inside the liver and anything that stands out becomes a visual descriptor. It’s non-invasive, if this is inconclusive, they will carry out a biopsy where a small amount of liver tissue is removed and have a look at that. This is an invasive test which no one really likes having it done. It’s puncturing the skin, so they try to avoid that.”
‘Rejection’ it becomes apparent is not a huge concern to my medical consultants. It is not a rarity. It is, in fact, a normal part of the transplant process, especially in young people like myself who have enthusiastic immune systems. I am told a large number of people who have a liver transplant come back in weeks or months after transplant, with flares up of rejection and it’s treated with first with high doses of steroids that usually takes care of it. Then if that doesn’t work, they up the immune suppressants. Rejection is the most common reason for readmission, which is why they do blood tests so frequently.
The most striking thing is that the way a consultant hepatologist would use the word rejection is different from the way perceived by the person, whose biggest fear is to have another transplant. For a doctor, it is a medical stage or a scenario. For me, it is the opening of a door to a world of fear and that thought of hospital admissions, tests, and nights spent unable to sleep as the patients in nearby beds, weep or moan in pain or sleep. The possibility of sickness, creeping in again, to fill my limbs with fluid, change my colour to yellow with jaundice and steal away hours of normal existence. Of course, now, the person who has already run the gauntlet once has a good idea of what’s coming down the track and tries hard to see it all as the ‘most wonderful inspiration and life experience for future writing’. But no one can really enjoy a hospital visit and totally pretend it’s a unique writers retreat.
When I first went in for my transplant, I had hoped to record podcasts, take notes, write up a diary, but illness takes away your energy and your ability on so many levels. Hospital life is so much more about focusing on survival rather than being creative so the Autopathography will wait. It will be so much easier to write after the illness experience rather than during.
The first step is steroids, the next step is . . .who knows? More tests and investigations.
To everything, there is a process, except it seems, my emotions which are now careering rollercoaster-like. Optimistic one moment, fearful the next. Each blood test bringing me a step closer to knowing or not knowing how this will all end up.
Rejection does not feel controllable by me. Medication can do it a bit but when you don’t know what has caused this turn of events or even if anything has at all, it’s so much harder to get your head around what is happening to you.
When I eventually go to see my consultant, I ask about tests to discover the cause of my illness and it feels as though she isn’t taking me seriously. It’s at this point it starts to occur to me that if my immune system is this active and aggressive, what are the chances it will happen again?
I don’t want to be someone who spends their life on this heavy medication, but if that’s what I need to do I will. But what if, what if, just maybe I could try to find the cause of my disease? If I could maybe find out if there were triggers which made the illness reignite itself and the inflammation of my liver worse?
What if I could become accountable for my health, my disease and my treatment?
If I don’t try, I will never know.
I contact my GP and that shows that the medical profession is still poorly set up to investigate or support holistic therapies.
“As regards functional medicine I can’t recommend anyone locally I’m afraid. It is a discipline that currently lies in the ‘alternative medicine’ camp and as such, I don’t really have the skillset to offer you an informed opinion.”
But this won’t stop my investigations. For now, until I manage to establish normal liver result test results, I can’t start my “Project Me’, but as soon as they are better I will.
I don’t want to wake up at 60 and wonder, “What if had researched my disease, would I be happier and healthier now?” I want to wake up at 60 and be able to say that I am proud of myself for taking the responsibility for this next period of my illness journey here and now.
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