6 things every living donor should know.

I couldn't find these on google.

This may be somewhat of a niche piece, but then again, my publication is called Rarely Written for a reason, and I have always gone by that age old literary advice of ‘write what you know’.

This is largely the result of google providing me with crickets when I wanted to know the answers to questions I had; gaps in the literature, if you will. I am certainly not the first ‘living donor’ and won’t be the last, and here in the UK, about 35% of organ transplants performed are the result of ‘live’ donation.

What is the alternative? The majority come from deceased donors; individuals who have either suffered terminal brain injury, known as DBD (donors after brain death), or those who have passed away due to total cardiac failure, known as DCD (donors after circulatory death). It’s clinical, categorical and bleak, but it’s also life-saving, life-changing and, I think, as a person who doesn’t subscribe to a particular religious code of beliefs, but who is intrinsically spiritual, the closest tangible evidence of re-incarnation.

It is important to note that, in some religions, organ donation, particularly from the deceased, makes for a theological contradiction. That isn’t why we as a family went down the living donor route.

My reasons, as a mother to a complex child with a rare condition about which little is known, specifically when it comes to chronic liver failure (she is maybe the third or fourth patient with Pmm2-CDG worldwide to be transplanted), for being her living donor, was that I felt I could somewhat control the outcome. I am healthy; probably in the best ‘shape’ of my life and, according to the surgical team who worked me up, the ‘dream donor’. I don’t say that to brag, but to emphasise what a no-brainer this route was for our family.

Because of the enormity of the task of being her donor, my mind and its love for future planning could not over-reach the imagined finish-line of surgery, something that, in many ways, turned out to be the starting point. Whilst I was provided with a generous wealth of information from the incredible living-donor team at King’s College Hospital, my mind naturally focused on the pre-op elements and, there are some quirks that just aren’t in the literature.

Here’s what I wish I had known:

1.You will be ‘gifted’ a brand new digestive system

Look, everyone knows what happens to the gut post surgery; the rearranging potentially sends certain things into a degree of ‘fight, flight or freeze’ (I’m looking at you, bowels), the general anaesthetic, sedation and strong pain relief all but stop the digestive process in its tracks, and to top it all off, air gets trapped in your abdomen from where you have been opened and closed. I was prepared for this to a degree, but what I didn’t anticipate is what would happen a week later, after the immediate shocks to the system had worn off.

I graduated pretty quickly from a liquid, to soft, to normal diet, and perhaps I did this too quickly? My digestive system has always been good to me; I’ve never popped antacids, never needed help with regularity, never found myself intolerant to foods, my gut seems to sufficiently break down the parasites everyone is obsessed with lately (hey, it’s almost like your gut is designed to process and even thrive off processing bacteria? Who knew?), and most of all, even after years of disordered eating, my gut has stayed in the game.

But in this recovery, I noticed something new unfolding. Whilst I don’t eat a hugely rich diet, I am a three-substantial-meals-a-day kind of girl, as opposed to a grazer, I eat meat, poultry or fish every day, plus eggs and I also drink full fat milk in my coffee. After the surgery, my new 2/3rds of a liver said, in no uncertain terms, that this wasn’t going to work; not right now at least.

Thankfully I am not only trained in naturopathic nutrition, but also deeply attuned to my body through nearly decades of yoga, meditation and various therapies, so I heard the signals loud and clear, and they were:

-fibre, fibre, fibre

-less meat and eggs

-sugar and highly processed foods are out

I’ve embraced it actually, because I feel overall lighter in myself, not least because this way of eating is better suiting my new digestive system, but because before, I had probably fallen victim to the notion that more protein is best. It really depends on your constitution after all, and mine has changed. The sugar and processed thing is really interesting also, because even though I am always conscious of eating well, not a day would go by before where 4pm would hit and I wouldn’t reach for a treat. There’s absolutely nothing wrong with this at all, and I sincerely hope I revisit my micro-gluttony down the line of healing, but for now, my new, more petite liver says ‘no thanks’. And in case you’re wondering, the effect of eating an entire bag of M&S chocolate coated cookie dough bites because I was feeling a bit sorry for myself, was not unlike the aftermath of a 3-day bender. Wild. It’s so important to listen to your body as it changes.

2.Take medical advice, but listen to your body’s cues

One thing I have noticed about the medical system, is how impatient it is in its treatment. Constipated? Take laxatives. A bit of acid reflux? Omeprazole. Now! Take it! And the big one ‘you can’t heal if you don’t stay on top of your pain’.

Firstly, if something like reflux is chronic, then of course you need suitable medication to manage it, but if it is as the result of a recent upheaval like surgery, then you can afford to wait until things regulate. Some of these medications are given out like candy, and without proper education given to the patient on just how powerful they are in changing the body’s natural rhythms, whether that be for better or worse; every action has a reaction.

The pain thing is really strange. I have a difficult relationship with pain, because, coming from a yoga and somatics background, I am well aware that there is a widely-held belief that pain is subjective to the attunement of one’s nervous system. I always thought I handled physical pain pretty well, at least what I had experienced of it, and then, I went into labour. I was quite frankly, struck down with the horror of these sensations, and absolutely furious that I had been lied to about what they would feel like by my yoga friends.

What I do know of myself is, intense pain that comes on suddenly, needs to be managed with drugs. There is no way I’m regulating my nervous system when I feel sensations that are akin to physical attack. I just can’t do it, and I know that now. When I have future children, I will take an epidural at the earliest possible convenience. I also found that, immediately post-op, I needed top up sedation; the pain was that unbearable. My typically lower-end blood pressure was consistently through the roof. There’s no way being a hero through intense and traumatic pain is good for the body; I absolutely had to numb it.

And then there’s the case of the more latent pain. The few-days-to-a-week-after pain. It’s not fun, but it’s manageable. I was off IV pain relief by this point, but, in what felt like every five second intervals, a small paper cup filled either with ibuprofen, paracetamol or morphine, was thrust into my hand. I’d started to move more by this point as well. Moving brings up its own new aches and stabs, because parts of your muscular landscape have effectively been remodelled.

In these instances, I am actually of the belief that masking pain is not helpful, because what if I spent the day bouncing around, picking up my ever heavier daughter and even attempting some light abdominal exercises without knowing the true sensory imprint? This is how we get injured because the intelligent feedback loop is broken.

So, to summarise this point, manage pain at its worst, but start to let it in as information, when you are ready.

3. Get the right pain relief straight after

The drug I had on tap right after was not the right one for me, and I wish I had changed it sooner. There is no one-size-fits-all in medicine, but it is often standardised that way, for a number of reasons. I had a little button to press every 10 minutes for about 48 hours after the op. I was told numerous times ‘this is your best friend’, and I wanted so badly to believe them, because it sounded like a great companion indeed, but this supposedly magic button was fast becoming my biggest saboteur. With every press, I began to progressively nod out, hallucinate and become more and more motion sick. Yes, my pain was kept at bay, but I also couldn’t feel my legs, which were being mechanically massaged by electronic compression socks at the time, unbeknownst to me.

I finally got it across to the lovely pain nurse that this one wasn’t working for me and, almost immediately, a new one was supplied. The reason this one wasn’t usually their first port of call was because it often created more adverse affects in patients, but it is important to note that I went into this surgery fit and well, without any systemic deficits such as liver failure, so my body metabolised such drugs differently.

Moral of that story: ask and ye shall receive.

4. Remember, you are going into major surgery fit and well.

Most of the people who enter into such an intervention are pretty unwell, and will be experiencing either chronic or acute symptoms that are compromising their quality of life. This means that, even where recovery is challenging, they are ultimately moving towards benefit, and a great improvement upon their previous state.

As a ‘healthy’ living donor, you are having something taken away, you’re going in with a full cup, and coming out with a deficit. Not a terrible one of course, because they run so many tests to check that you’ll be able to return to fighting fit health in reasonable time, but still, you will feel a unique void that no other post-operative patient will quite get.

This void manifested for me in the form of weight loss, and I went into this surgery already on the slimmer side of my ‘normal’; which the surgeons prefer, as just one way to further mitigate risk. If your fat-phobia alarm bells are ringing right now, mine were too, but these guys are so methodical and clinical in their approach that this preference is about ease of excavation more than anything else. Remember, they are always thinking in terms of the risk:benefit ratio, and by being an otherwise healthy patient, you automatically face a heavier risk, so they go extra hard on the mitigations.

5. Your liver will never look the same again

And you may not get it back to 100% capacity. I can only speak in terms of liver here, and the only other ‘live’ donor organ that can be transplanted is a kidney; and a healthy person can live with just one of those. The liver, however, is a remarkable transformer-like organ. Firstly, only a part of mine now makes up the entirety of my daughter’s liver, fully functioning and probably morphing into its own little Ruby-esque signature.

Liver tissue is the fastest regenerating of all in the human body, taking as little as 2-3 weeks to repair after doing something like giving up alcohol. My liver begun regenerating immediately, and will likely be back to full size in 8 weeks time, but, and there’s a huge but here, it won’t be the same shape.

As the surgeon explained, this is not a case of growing back a leg that has been cut off, but rather, the whole mass expanding, so when I go for follow up scans, my newly grown liver will appear a different shape. Its essential functions, however, remain the same.

6. You can decide when is the right time to be reunited with your recipient

Many, but not all, donors donate to their children, meaning that the emotional weight on the procedure is huge. Such freight of the heart cuts through all logic, and it’ll have you getting up before you’re ready, and falling apart when there aren’t enough people to pick you up.

I had ‘planned’ to go up to her ward the day after, as early as I possibly could, but my body just couldn’t do it, and my mind felt so heavy with sedation that I couldn’t make sense of any kind of logistics that would allow that to happen.

I managed to get to her the following day, wheeled up in a chair. When I first got out of bed, my body went into shock in the way it does when your mental will and physical state are truly and utterly divorced, but I persisted.

What I do know, is that from when I was reunited with my baby, my healing began to accelerate. I’m sure that getting moving helped jump start my body’s own natural processes, but what really got me through the sticky marshes of early recovery, was seeing her begin to slowly wake up when she heard my voice, and seeing instant changes, like a new glow to her skin and a fresh vitality in her eyes.

I’d do it all again.