If you are a patient on the transplant list, you may find this a harrowing read.
Some people may have two, three or more transplants in their lifetime.
March 2007.
The Proclaimers were walking 500 miles at number one in the charts. I was working at a lovely primary school in a nearby village and the Easter holiday was approaching. I loved being at work. For years I’d felt .. inadequate.
“Why don’t you go to work?” people would ask with a look of disdain. I didn’t even look ill (for goodness sake). “I dialyse during the day, three times a week” was my answer but they didn’t understand.
I’d managed to swap to evening slots. So I’d go to hospital straight from work.
I’d been dialysing since 1990. Seventeen years. Dialysis wasn’t a problem for me – it was just something I did. I’d been on the transplant list since the late 80s and quite frankly, I’d stopped thinking about that fifteen years ago.
When my phone rang at just gone midnight, it was the last thing I was expecting.
———–
“Nikki, we have a kidney for you.”
I leapt out of bed and my husband asked what was wrong.
I wanted my son to have a mum that was ‘normal’. I owed it to him to take the risk. I’d stopped packing a hospital bag over ten years ago. So I just grabbed my handbag, hair brush and phone charger!
The journey to hospital usually took around thirty minutes on a good day. I arrived within fifteen.
It felt like a bit of an anti-climax when I walked onto the ward. All was silent – it was the middle of the night, I suppose. Karen, the nurse who rang me, greeted me with a hug. We’d had a long-standing joke that she would be the one to make “the call”. She was pleased as punch that she was on duty that night.
I had dialysis, and whilst I sat attached to the machine, I could not comprehend never doing it again. Everyone was smiling – I’d been waiting for so long. A doctor whom I’d never met said I’d need to ‘do as I was told’ for the next three months; and I needed to “get that nail polish off!”
I had no control of what was going to happen. It made me nervous.
Although I’m O positive blood type (the most common), I have a rare tissue type – hence the long wait. There were no suitable family members, and no live donor pools back then. The kidney wasn’t a great match. It only matched in 2 out of 6 categories. Nevertheless, it was healthy and doctors were positive about the outcome. I was top of the list.
I’d had lots of blood taken and mid-morning, a white box arrived at the nurses’ station. The words ‘HUMAN ORGAN’ were stamped across the front in red.
This was it.
Around noon, I was wheeled to theatre. My veins were a mess after so many years of needles and surgeries. So the nurse had to put a cannula in my neck for the general anaesthetic, which wasn’t particularly pleasant.
Keith, the transplant surgeon, appeared in theatre scrubs. I told him, ”Look after me, won’t you. I have a son who needs me.”
Seven and a half hours later, I was back on the ward, where my family were eagerly waiting; with tubes hanging from my neck, my wrists, a drain from my wound – and a urine catheter.
The operation was a success but the kidney was ‘sleeping’. I felt .. awake. Really, properly awake. Like a light had been switched on behind my eyes. Was this how everyone else felt like every single day? It had been so long, I’d forgotten.
I didn’t sleep for three days. I was sore and had a lot of stitches but it seemed a small price to pay. I had a morphine pump for the pain, which I could self-administer. I was high as a kite.
Everyone visited. Nurses, patients, family, friends, even patient transport drivers. They were all so happy for me. The room was packed with cards and flowers and a .. buzz of excitement. My cousin brought me a Gucci bag, so I could carry my urine catheter bag in style to the hospital shop!
I was interviewed by local and national press. .. ‘The woman who had a baby on dialysis has a kidney transplant!”
To the outside world, it was a great story.
Although my bloods were showing some improvement, I still wasn’t passing enough urine. I was on over thirty tablets a day, and having steroids pumped into my neckline. I felt terribly unwell. The kidney was being poisoned by all the drugs and was rejecting, so my medications were changed.
I had to go for biopsies (a procedure where samples of the transplant kidney tissue are taken) almost every other day, which were horrible. I hated them. I wasn’t told why except that the doctors wanted to “have a look”.
It sounds mad, but I desperately wanted to dialyse. I was carrying around twelve litres of fluid and felt dreadful. I was in pain everywhere. I was shaking. I couldn’t breathe. I felt sick all the time.
Nobody would listen. They just told me to drink more. It was like they didn’t care how I felt. They only cared about making that kidney work. I wanted to shout. To scream. I’d ask questions but nobody would give me a straight answer.
After about two weeks, I was put on dialysis. It was such a relief. But I was only allowed to remove two litres of fluid because the doctors wanted the kidney to start working instead.
I was on oxygen. Late one night, I kicked up a fuss. Why did I feel so ill? Why couldn’t I breathe properly? I was taken for some x-rays and the following morning, was told I had the highest levels of Cytomegalovirus (CMV) the consultant had ever seen.
I’d never heard of Cytomegalovirus. Why hadn’t I been told about the risks? It was a virus that, in transplant patients can cause organ rejection, amongst other serious complications. Like death. To treat it, I needed an intravenous cytotoxic treatment, Valganciclovir, for a few weeks. My neck line and the other cannulae had already stopped working. So it was given via my fistula (a ‘no-no’ for a dialysis patient), along with more steroids.
It wasn’t normal practice but there was no alternative. All the immunosuppressive drugs were reduced to allow my body to fight the virus.
I was allowed home occasionally. I didn’t want to see anyone. Instead, I’d walk my beloved dog, Sam, across the fields on my own – with tears running down my puffy, bloated face. My heart was banging so loudly in my ears, I couldn’t hear anything else. I was still sore from surgery. I tried to be strong, really, I did. I tried to stay positive.
But this wasn’t right. I knew it wasn’t and I really couldn’t face the hospital, the needles and all those tablets much longer. I’d had every side-effect possible. The drugs were too strong. Too weak. Oh, here’s some more IV steroids. And dialysis: the only thing I looked forward to.
It was a living hell.
Three months passed. Then four. Nobody visited anymore, except close family. No-one could face me. They didn’t know what to say. This transplant business wasn’t how they expected it to be. It wasn’t how I expected it to be, either.
My sister, Jo, brought daily food parcels because I wasn’t eating. She also went out of her way to find me the most ridiculous hospital night-wear which caused much hilarity amongst the staff. My young nieces would bring fake tan and my arms were soon a strange dark brown! They really kept my spirits up.
There was a question I had to ask although I already knew the answer.
The FSGS was back with a vengeance.
This was something else they hadn’t told me even though they knew. I was fully aware that it could recur in transplanted kidneys. Plasma exchange, a treatment used routinely nowadays for FSGS, wasn’t available then.
September 9th: five months since my surgery. I was spending the day at home when my phone rang. I needed to go back to the hospital. Now. No explanation. For the first time ever, I burst into tears in front of my son. He was fourteen and he’d never seen me cry. “It’s okay, Mum. You’ll be okay. Don’t cry.” And he hugged me. I felt so pathetic. I needed to be strong.
I sat in the hospital carpark, trying to summon up the courage to face what was coming. When I finally went inside, I was left waiting for over two hours in the visitors’ room. I was furious. This wasn’t fair.
When Magdi, a straight- talking Egyptian surgeon who’d done my last fistula appeared, I exploded. I wasn’t rude but my language was less lady-like than I would want it to be. What was going on? I demanded to know.
He was wonderful. He sat me down and held my hand.
“We have a problem. I think you know that the FSGS has recurred in the kidney. You also have cellular and vascular rejection. I’m terribly sorry Nikki but we need to get this kidney out. There’s nothing else we can do to save it. I really am sorry.”
I wasn’t sorry. I was glad.
“When?”
“Tomorrow. “
“Good. Thank you.”
Finally. Someone was being honest with me.
The following morning, I went back into theatre.
After ten days, I went home for good. I met Magdi as I was leaving, and I kissed him on the cheek, with his permission of course. I thanked him for looking after me, and apologised for swearing at him. He laughed – he’d had far worse!
A few weeks later, I saw one of the transplant co-ordinators who asked if I’d like to know about my donor and I said yes.
My kidney had belonged to a teenage boy not much older than my son. He’d passed away following a severe asthma attack.
I was devastated. That beautiful, young, healthy kidney was utterly ravaged by my FSGS and their drugs. We did that. I did that. The guilt was so powerful – I cannot explain it. I cried so much for that young boy and his bereaved family. I so wanted to have been able to tell them that their kindness had changed my life. That their son had changed my life.
I was thirty-six. I’d lived with this illness for twenty years and I’d just had the worst few months of my entire life. I took myself off the transplant list. I wasn’t prepared to put myself through that ever again. A few weeks later, I was back at work.
I returned the following February for a surgical hernia repair on the transplant site. Magdi asked if I’d reconsider going back on the transplant list. I said no.
Each anniversary, I take a few moments to remember my donor. He would be in his thirties now.
———
I have PTSD. There was no psychological support available in 2007.
A kidney transplant is a beautiful gift. An act of selflessness, often at a time of immense sorrow. But it is not a cure and it does not come with a guarantee.
Life is also a gift. As a now life-long dialysis patient, I live mine to its fullest.
I would advise anyone on the transplant list to do the same.
Last Reviewed on 26 June 2024