Transplant Diaries 🏥 Donating A Kidney In The Middle Of A Pandemic

Brandon Sullivan ✍ I wrote this in March 2021, but felt it was a bit too personal to publish.

Someone who was once the closest person in the world to me passed away recently, and I never got to tell her about this, or many other, stories. So much left unsaid, for the want of reaching out. I don’t know Quillers, I think we’ve all got people we feel we should get round to getting in touch with. Don’t delay, because one day you might get an incredible shock, and it’ll be too late.

Dedicated to CG, my first love. And with a verse from a song that came to me via Christopher Owens’ Twitter:

Nothing I can say

Can make your picture talk

I feel so tired and

Nothing I can do

Will make your picture move

I feel so helpless but

I can feel

A child with the ghost here

You let your heart slip away

If I had one wish

I'd wish to talk with you

I have some questions

Things only you could know

If I had one wish

I'd wish to talk with you

Nothing you can feel

Can feel as cold as this

I'll sing this song and

I'll say goodbye forever

(Gary Numan, A Child With The Ghost)

Anyway, this all happened 2019 – 2021. It’s the longest piece I’ve published in one go, but it’s quite a story. I hope you enjoy it.

Preparation

It’s harder than you might imagine, donating an organ (in this case, a kidney) to someone who needs it. Lots of health tests, which is to be expected: ensuring you’re the same blood and tissue type, for example. The fact that the recipient is my brother makes this more straightforward, but nevertheless, it’s a relief when it’s confirmed.
But a psychiatric assessment? Hmm . . . I go to meet the psychiatric, and we have a long, interesting conversation about my past which, truth be told, contains a decade of alcoholism and rampant drug use. I quit alcohol when I was 27, and drugs on my 30th birthday, and I’m now in my early 40s. He’s interested in this, and we talk about it, but he’s more interested in how I am doing now-a-days and why I’m donating a kidney. Some people do it for the wrong reasons, apparently – and I’m surprised to learn that 10% of potential altruistic donors are rejected for psychological reasons. But, as with many things to do with the transplant, it makes some sense after a while.

The test results surprise me by telling me that I’m “fit and in excellent health” – is health in the eye of the beholder? I’ve definitely felt fitter before, but I have been working out a lot. It was a strange experience, looking at an X-ray of my body, with the surgeon who describes how he is going to cut open my stomach and remove my kidney.

The final hurdle is a meeting with an independent assessor, who meets my brother and I together, looks at our ID and family photos to ensure that, yes, we are brothers. I wonder why, and if, anyone has faked this. Prior to that I have another conversation with a well-meaning professional who wants to make sure that I’m not being coerced. I say that he needs a kidney, and I have one spare. It’s a win/win scenario as far as I’m concerned. My family and I are all worried about him, and want him to get better.

Almost a year has passed since the start of this process, a year in which my brother attends dialysis four times a week, and that I’ve had to keep my employers waiting on the news that at some point, I will need time off. It’s frustrating, at times tedious, irritating, and the pandemic doesn’t help. But then the news comes through . . . waiting on the results of a final test, and then it’ll be a case of simply booking the next available slot.

2020 has been a challenging year for everyone, and my family are no exception. My older brother has been ill with a rare kidney condition for almost four years, but nobody expected my younger brother, who had been feeling a bit weak and poorly for some time, to get the shocking news that he had cancer, that it had spread, and that some of the cancer is incurable, but it is treatable. In a grimly ironic twist of fate, the cancer has spread to one of his kidneys and he must have it removed. He had volunteered to donate his to my older brother before I had, but the transplant unit noted that he had suffered some periods of depression in his life, and were therefore hesitant. Had they progressed with him, in the preliminary tests, they would have discovered his cancer, and perhaps they could have treated it before it spread. This idea will haunt me forever.

My younger brother’s kidney removal goes reasonably smoothly, and he’s released from hospital after a few days. The transplant unit, understandably, have concerns about a genetic disposition to kidney disease, and tests must be done. Which means further delays. Amidst this family turmoil, my wife gives me the joyous news that she’s pregnant with who will be our first child. Throwing caution to the wind, I don’t wait to share the news – I tell my parents and my brothers, who are delighted. We tell my wife’s family, and they are likewise so pleased. It’s some welcome news in the midst of so much that has been worrying.

A new strain of Covid emerges just as the Transplant Unit get in touch, to say that they have received test results confirming that my younger brother’s cancer is not genetic – we have the OK to progress with the transplant. The new strain of Covid means that I will have to self-isolate for two weeks prior to the operation. My brother and I agree that we should take the first available appointment, and that appointment is the 6th of January. This means isolating over Christmas and new year. This is a big ask, not just of us two, but our partner’s families, also. But that year, as per Prime Minister Boris Johnson, “Christmas is cancelled” anyway, so my wife and I have Christmas, just the two of us, and the little one who is due to join us on the 12th July, of all dates. We find this out because we had arranged to go for a private scan. And we have the private scan, because the NHS scan is due for the same day as the transplant, 6th January. I joke that I have the best reason for any expectant dad not to be at the scan: I’ll be a few metres away, donating a kidney. I’m sad to be missing the NHS one, but found the private scan I attended a breath-taking experience. I saw the feet move and everything felt real – an indescribable experience. I take a photo of the ultrasound image and send it to family. I also announce to a WhatsApp group of friends from school that I, the last of the gang to do so, will become a father.

I have to check into hospital the day before the operation. I’m staying in the “relative’s room.” It’s spacious, en suite, with a single bed. If I to review it on TripAdvisor, I would say it was no frills, basic, economy. But it will do. I settle in – put something on my tablet to watch, and have some snacks. The door goes. The first of many visitors. This is something I hadn’t expected – hospital is very human intensive. Several nurses come and ask me a broad range of questions. It seems like they are double, maybe even triple checking things. I work for a bureaucracy, and recognise risk mitigation protocols and processes when I see them. The anaesthetist comes to see me, a jolly, dark-haired man with a broad Northern (Ireland, not English) accent, and we talk. He tells me about the anaesthetic. I tell him I once had to stop a filling because the dental anaesthetic didn’t work. He tells me that I don’t have to worry. He asks some of the same questions as the nurses – do I have any loose teeth? I ask where he’s from, and he smiles and says that he’s clocked my very slight (and unrecognisable to the untrained ear) Belfast twang. He’s from Ballymena. He leaves, and I am glad he’s going to be there tomorrow. I liked him, him had a natural warmth. The surgeon arrives later, him and I have already spoken on the phone. He’s a tall man, confident, distinguished looking. He inspires confidence and a sense that I will be in solid, professional hands. He asks me to take my top off and stand up straight. I do so, and he considers my torso. Then, he takes a market pen and draws an arrow, pointing upwards, on my left hand side. This, he tells me, is where they will remove the kidney. I ask some more about the operation. Naively, I assumed there would be one surgeon, simply removing my kidney, and placing it in my brother. He explains that there will actually be four surgeons, that I will be operated on first – an incision made to remove the organ, and two much smaller incisions, one for a camera, and one for the “keyhole” surgical tools to be inserted. The kidney, I am surprised to learn, is removed by hand. As well as the two surgeons allocated to my part of the operation, there will be the anaesthetist, and several nurses present.

I am due for surgery at 8:30am, my brother an hour or so afterwards. The operations are staggered, so that he is ready to receive the kidney precisely at the moment that I am ready to have mine removed. He explains possible side effects, and reminds me that I can, at any point, call it all off. I tell him I understand, but that I won’t. Another nurse arrives, to discuss a request I made earlier for a sleeping pill. I have not taken a sleeping pill since my 20s, but I want to at least get some sleep, and my mind is racing. She says she will ask the doctor if I’m able to get a sleeping pill, and we have some general chat. I tell her about the pregnancy scan, and she asks if I have any children. I say this is my first. She smiles, and tells me about her four children, and her fairly recently arrived grandchild. It’s getting quite late, when she returns with the pill, and I take it, and feel its effects. They’re more subtle than I remember, but then again, the ones I took before were stronger and obtained on the black market, what seems like a lifetime ago, mixed with all manner of other substances, in a shared flat that was a party zone. Around midnight, I fall asleep.

Operation

I wake up having slept reasonably well, full of nervous energy. I do some sit-ups and press-ups, shower, and try to reply to the many messages of good luck that I have received. Being rather a vain character, I had trimmed my chest and body hair, shaved, and had a haircut in advance of the operation. I’d also been working out and running, I told others (and myself) to be as fit as possible for the operation. But it was at least partly to look as acceptable as possible whilst being examined, operated on, and seen by many people. The folly of this would later become clear. I arrive at the ward when I’m due and given a gender neutral, unflattering gown that just about goes midway down my thighs. I was told that I could wear underwear, and chose a nice pair of Ralph Lauren boxers: again, because of vanity. I’m also relieved that I will have a degree of modesty intact. Again, the folly of this chain of events will be revealed later.

I make preparations – my mother is going to phone the ward to find out I’m OK, and then contact my wife. My wife is going to let others know that I’m OK. When I’m able, I’ll call my wife to find out how the pregnancy scan has gone. My wife and I decide that, not matter if there is any bad news from any quarter, we just tell it as it is.

And then, it’s time. I lie on a trolley, and assigned a nurse and a porter. I go through corridors, talking to the two of them. One lives near me, and the other used to play golf on a course near me. I’m grateful for the distraction. Like many other NHS staff, they’re friendly, pleasant, and good company. The trolley goes down a corridor that seems to be where all of the surgery takes place. Surgical staff stand at the doors of various rooms, saying hello to us as we pass. A scene from the film Jacob’s Ladder flits through my mind. There seems to be many procedures taking place today. And then it’s into the room where I’ll be operated on. The Ballymena guy is there, and a few others. Adrenaline is pumping through me. I’m asked if I’ve had surgery before, and I say yes: my tonsils and adenoids were removed in 1984 (at the Royal Victoria Hospital, Belfast). I say I remember the anaesthetic, counting to ten and not making it past four or five. I’m told it do it again, and watch various drips being attached to me. I remember a friend of mine talking about doing this exact same procedure, and asking if he can go under listening to Pink Floyd. His request was granted, and he brought he own headphones. I’m asked to start counting to ten, by two I feel incredibly good, and by four or five I slip . . .

… and then I come to. I feel euphoric. A kindly nurse (I later learn she’s a “recovery nurse”) is looking down at me, and I’m in a corridor. She tells me my operation went smoothly, and to take things easy. I ask how my brother is, and she says he’s still being operated on, but that it’s going well. I say I need to get to my room on the ward, and she explains that they’re making some preparations. I tell her that my wife was over at the maternity ward, getting a pregnancy scan, and that I need my phone to call her. She smiles and says she’ll get a phone for me to use, and that she can look at my records to get her number as she’s listed as next-of-kin. I call my wife, a woman I’ve known for five years. She’s never heard me intoxicated, and later tells me that she was so glad I said “hello, it’s Brandon” as she wasn’t immediately sure it was me – I sounded different, slow, laboured words, slightly slurring. There, but not really there. And I knew immediately by her voice that something wasn’t right. All I can really remember of the conversation is me asking “what do you mean?” and my wife replying “the midwife said that our baby has died” – I replied to her “I’m so sorry.” I can remember the horrified look on the nurse’s face, who has just witnessed a man emerging from surgery and being told that his wife has miscarried.

Six weeks after the operation, I have a follow-up consultation and check-up with one of the surgeons. I ask if I was sedated after finding out about the miscarriage, as my mind went blank – I have no memories for what feels like a few hours. The surgeon tells me that the kindly nurse ran to the room where I’d been operated on and told my surgical team what had just happened. The surgeon candidly told me that they simply didn’t know what to do, and that he’d come to see me and that I was conscious but generally incoherent. He said he felt I had gone into extreme shock, which, along with the anaesthetic, explained the memory loss.

Recovery

When memory returns, I’m in a large room, on a hospital bed, with lots of things attached to me. Including self-administered fentanyl. Every five minutes, a green light comes on, allowed a dose to be self-administered. I self-administer an awful lot: at one stage positioning myself so, if I doze off, the green light wakes me up and I click the button for another dose. Another thing that you’re not told before coming into hospital is how many times people will disturb you to make sure you are OK. Given the shock that I had just had, staff were understandably worried. Staff from the transplant team, all of the surgeons, the psychiatrist, and lots of nurses came to sympathise with me. These kindnesses were appreciated later on, though at the time, I was simply too removed from my reality to absorb anything. I do remember, though, that one of the members of staff shared that he had lost a pregnancy, and said that if I ever wanted to talk about it with him, I could.

I had waves of nausea, which were promptly treated, but I was still sick on a few occasions. There were some moments when pain, discomfort, and weakness made for a very unpleasant experience, but they were quite rare. It was a good 12 hours after the operation, and following a strange itchy sensation, that I realised I’d been shaved from the mid-chest down and that not only had one of my thighs also been shaved, the boxer-shorts I had worn were nowhere to be seen. It was quite an odd feeling to know that I’d been undressed, shaved, a human hand placed into my abdomen, an internal organ taken out, and a catheter put in. But these thoughts, like every other thought I was having then, merely bounced off me. I could understand facts, but the medications I was on prevented the vast bulk of feelings.

I messaged some friends to say I was doing fine and the operation had gone well. I simply couldn’t face mentioning the miscarriage. I later found out that my mother had called my wife, who was too upset to take the call. My mother-in-law answered, and between them both, they told our extended families, saving my wife and I from doing so. For this, I am so grateful.

The next day, I manage some food, and to go to the room opposite where my brother was. His body had accepted the kidney, and things were looking good. We chatted for a while, but I was tired and went back to my room. I had gotten to know the nurses a little bit, as they were coming in every hour. I wish I could remember more about them, their names and so on. One of them went to school with Walter Smith’s son. They were pleasant and reassuring. They all wore masks, because of Covid, and it makes me a little sad that I might not recognise them were I to pass them because of this.

Later on the day after the operation, a few interesting things happen. A tall, slender woman walks in and says “hello – I thought it was you, Brandon. I was in your year at school” – and she pulls her mask down. I instantly recognise her. We hadn’t spoken in 25 years. It feels really good to see someone I knew, even though we weren’t particularly close back then. She and I talk for a while, and her and another nurse help me onto a chair in the room. They detach the fentanyl drip, and the surgeon arrives. He tells me that I was “surprisingly muscly” and therefore the operation had taken longer than it might otherwise have – he had to cut through stomach muscles I’d been honing in the months coming up to the operation. He also tells me that I was a “considerable unit” of a man, and so therefore he was recommending a higher dose of the painkiller Oxycodene to take, as I was no longer on the drip. I’m not sure what the dose is, but I do know that it hits me, hard. I feel absolutely out of it, and it was quite a delightful feeling. But I felt myself starting to slide down the chair I was sitting on, and had to be helped onto the bed. A feeling of warm contentedness washed over me. I put headphones on and listened to music. Despite the circumstances, I enjoyed those few hours. I explained to one of the doctors just how intensely the pills had hit me, and he said they had made a bit of a mistake: they hadn’t allowed the fentanyl to wear off before giving me the new pain relief. He was very apologetic. I told him not to worry.

The pain relief tablets not only eased physical discomfort, they allowed me to walk, shower, visit my brother. Opiates remove pain; physical, psychological, emotional. And they slow down the mind, so when I spoke to my wife, and she told me that she was coming into hospital as well, I asked why, and regretted it instantly. I realised that who have been our first child was still inside her womb, lifeless, and that my wife would have to go through a birthing process. I knew that she had a horrendous ordeal in front of her, but anaesthesia meant that the information remained almost theoretical. I was not dealing in emotions, and the only feelings I could understand were physical pain and discomfort, and the drugs that relieved them. But I knew I was living through something, and that my wife and I, and our families were living through something. I tried to remember as much as I could, but I was in a haze of lack of sleep, medication, and shock.

I spoke to the transplant unit staff, and asked if I could have access to the relatives room, where I had stayed the night before the operation. They said of course and my wife and I met up in it, the day after she birthed who would have been our first child. I’m very grateful for that time. We later found out the child who didn’t make it was a girl.

Aftermath

Physically, I recover fast. So fast, in fact, that I am allowed to go home on the Friday. I checked into hospital on the Tuesday, the operation was on Wednesday morning, and all of the events I described above, and others I don’t recall, happened in about two and a half days. I arrive home, and I’m writing this seven weeks later. Quite a lot of interesting things have happened in those seven weeks, and maybe I’ll write about them some other time, but for now, I’m back at work, and starting life, without a kidney, and learning to deal with the gap where an expectation of fatherhood was. I joined two “clubs” that day, both bigger than one might imagine: live organ donors, and more significantly, those who have experienced pregnancy loss. I have been open about it with friends, relatives, colleagues. People who ask how we are doing, I reply that it’s hard, but it’s life, and we are hopeful for the future. I think people should talk about it. In return, many have told me of their experiences with it. It is not unusual, but it seems hidden in plain sight.

Post Script - 2024

I finished this piece in March 2021. My brother died a weeks later, and seven months after that, I became a father. A year ago, I became a father again, and have two healthy children.

I re-read this for the first time since I finished it, and had forgotten most of the details.

Life moves pretty fast. Writing some things down is worth it.

If you’re dithering about contacting someone, maybe to right a wrong, or just to check in, go for it. Time isn’t always on your side.

⏩Brandon Sullivan is a middle-aged West Belfast émigré. He juggles fatherhood & marriage with working in a policy environment and writing for TPQ about the conflict, films, books, and politics.