I sat down to start this post yesterday. The sun was shining. There wasn’t a breath of wind and the sky was cloudless and blue and bright. It felt like spring. The magnolia that tilts over the fence was covered in waxy white flowers with their deep purple centres, and on the walk to the hospital we crossed footpaths covered in a carpet of pink peach blossom. We have a resident blackbird who is industriously building a nest in some close but mystery location. I had drunk pretty tea filled with flowers in a little Newmarket cafe and walked further than I had managed in years. It was a good day.
But I didn’t end up writing anything yesterday. And today isn’t such a good day. My wound keeps splitting open and bleeding. My blood results have deteriorated. I’ve lost too much weight too quickly. I can’t seem to stay hydrated enough despite drinking over 3 litres of water a day. My head aches with every movement. I threw up in the carpark, twice, just managing to get the car door open. It is grey and cold and windy. And I am being admitted to the ward again.
This is what recovery looks like. Good days. Bad days. Completely unpredictable even when you are doing everything right.
There is no way to prepare for this really. I mean, there are things you can do beforehand that make it easier. Being as healthy as possible. Reading all the literature they give you carefully. Having the people you need around you. Making some plans for the future. These things help you get through, yes. But until the surgery happened I couldn’t have imagined what this would feel like. They give you great sheaves of paper and documents detailing the post transplant care routines, you get multiple visits a day from dieticians, pharmacists, coordinators, doctors to explain in more detail what you’ve read. The nurses and doctors impart critical instructions in succinct bullets on their brief rounds. The sheer volume of information is extensive and overwhelming. But even if you manage to absorb most of it, knowing and understanding theoretically what is required of you, doesn’t prepare you for how it feels like to live it.
There are so many rules and things to remember. So many behaviours that have to be practised and repeated until they became innate. So many restrictions you don’t even realise you’ll find difficult until they exist. So. Many. Pills. So. Often. And the dosages change almost every day so you’re constantly checking and rechecking against your drug chart, which has started to resemble a ballpoint tangle more than an ordered set of notes. Even washing your hands becomes a ritual, a compulsion that leaves them dry and chapped.
I knew everything would change, but I don’t think I realised everything would change.
The day of the surgery I was very relaxed. Up until that moment I had been, I admit, scared… anxious. Worried that I might in some way jeopardise the surgery before it got to happen. But on the Friday before I was taken in and put under I felt almost supernaturally calm. My family were not but even the surgeon noticed when he came to see me beforehand. I told him, today is my day off. Today you work hard. And tomorrow I start work again.
Dont get me wrong, this is the dream. But this dream, like any worth having, is bloody hard work. There are so many things that are already better and so many things to look forward to when I have recovered more, but it isn’t easy. It’s inarguably better but none of this is easy.
The funny thing is that going into the surgery the only thing we worried about was the kidney working. Nobody had told us to expect any other problems. We were of course anxious that it might not take or it might not function effectively but my kidney started working well straightaway; it was the rest of my body that struggled to catch up.
I spent the first nine days in agony. I won’t sugarcoat that. It was very, very painful and confusing because it wasn’t the pain or the problems I had expected. I wasn’t prepared. Nobody had warned us. And although the doctors assured us it wasn’t unusual, it was scary and we hadn’t had any warning. And their instructions are ambiguous at times; generic directions to get mobile as quickly and as often as possible didn’t actually mean I needed to force myself into painful hunched laps of the seventh floor wards several times a day. One day I’m told to match my fluid input to my output, the next to limit my water intake, the next to drink as much as I can; over three litres if possible. Sometimes you get contradictory advice from different parties. It is hard.
The days are long and start early. There’s a battery of pills to take at very specific times and in very specific orders. There’s long waits in uncomfortable chairs for clinics every single morning. And a return to the dark, cold motel unit that is our home for this transition period. It’s hard not to feel a little trapped and isolated sometimes. Both by the space and by my own body’s limitations. It’s difficult to feel energised and enthusiastic and ready and then to crash and burn, lying curled up in bed and trying not to keep the very small amount of food I managed to eat. My appetite has still not returned. The week of not eating after my surgery has shrunk my stomach to the point where everything I eat feels like it wants to come back up. The medications I am on to prevent rejection don’t help the nausea or indigestion. It’s exhausting feeling ill like that most of the time and it isn’t helped by trouble sleeping. I am homesick. At times a little desperately. And though I am well practised at patience, right now I am decidedly impatient.
I am a very driven person. Determined, competitive…. possessed of almost scary willpower and discipline. Which has sometimes been detrimental but in this instance helps a great deal. The doctors are impressed by my consistency, my commitment to the diet and routines we ideally should be following, my understanding of the requirements needing to be fulfilled to keep this gift of a kidney as safe and healthy as possible. Before the surgery we were warned that it would be difficult to manage these things, that lots of people struggle. Tom told the team, it won’t be a struggle for Suzi. And he’s right. Strength of will is something I possess both naturally and that I have devotedly developed and it is proving extraordinarily useful right now. Except that I also have impossibly high standards for myself. I expect to be… well. Now. Immediately. Or very soon. And I am struggling a little with the fact that despite my iron self discipline, this is something I can not manage. My body has had a massive trauma and it’s not ready yet. It’s still trying to figure things out. And it’s dragging me back from where it is I want to be.
Anyone who knows me well knows I battle with situations outside of my ability to control. Every part of my life has been tailored to be as within my power as possible. I don’t think I’m a rigid person but I definitely prefer to know and understand what is happening so I can be as prepared as possible. It soothes me. It strengthens me.
But currently I’ll admit my body feels a stranger to me. One I don’t recognise or understand and one I am not prepared for, despite everything in the lead up that I endeavoured to research and learn. But there wasn’t enough information or there wasn’t the right information and everything is new and different. Very different. I feel out of control and ignorant as to what is making my body behave in these different ways. In some ways it is better. More resilient, faster to bounce back, it has increased energy, it is easier in many instances. In others it is confusing and strange and not quite where I thought it would be. Healing is a long process. Healing from this kind of trauma an even longer one. Getting used to new routines, demanding ones in a different way to the demands of my old one. Getting used to new medications, each with their own implications. Getting used to lifestyle and diet changes that are sometimes tricky and complicated and difficult to navigate. And on top of that my body is dealing with an altogether unfamiliar process; proper kidney function. It, and I, am not yet used to it.
And life doesn’t really let you have a moment to pause and reflect and adjust and cope. Life continues happening around you. Big things. Hard things. Things you again have little to no control over. You want both the capability to do more and the space to do less with life. But you keep on. Because that’s all you can do. Keep on keeping on, as the saying goes.
My journey has so far been ups and downs but I know I am extraordinarily lucky. Not only to have had the opportunity to have this surgery but to have had it go so well. The surgery itself couldn’t have gone more smoothly for both my donor and myself. Other issues aside, the recovery of my kidney has also been, by all standards, far surpassing average. It began working straightaway; it has already reached the top range of normal for creatinine levels (which measure kidney function; low is better) as a person with two working kidneys; every artery they attached (and I got to listen to every one pumping blood through) is clear and functioning beautifully. I work hard to help it in every way I can but I am also lucky. A friend I have made here at the hospital, Refiti, had his transplant at the same time as mine. We waited in pre-surgery together and then spent the night in ICU afterwards lying a metre apart and talking all the way through. His kidney came from a cadaver and it didn’t work for ten days. He had a transplant but still needed dialysis. Even now, three weeks later, his creatinine levels are 230. That’s almost as bad as mine were pre-transplant (though as you know the main issue was not my failing kidneys but my electrolyte dumping). I feel almost guilty that I struggle so much sometimes with this all, when I am also acutely aware of the extremely fortunate position I am in.
Mostly I am doing well. And I am excited and happy and so eager for the future it’s almost impossible to contain. There are already so many positive changes in myself and in my life. I am lucky. So, so lucky. Lucky to have the support I have, lucky to have the family and friends, lucky to be here in New Zealand, lucky to have this kidney.
I could not have got this far without these things and I am grateful every day. They (and you) are important to me. They (and you) are necessary to me. They (and you) are the greatest blessings of my life.
I am lucky. Life is hard, but life is good.
The title for this blog post comes from one of my favourite poets:
“Be easy. Take your time. You are coming home to yourself.” – The Becoming, Nayyirah Waheed
And if you do want to help my recovery financially the link for my Givealittle page is here:
https://givealittle.co.nz/cause/savingsuzi