After taking part in a panel discussion at this year’s UK Kidney Association (UKKA) UK Kidney Week (UKKW; 11–13 June, Edinburgh, UK) that examined the benefits of pre-emptive kidney transplantation, Kudz Munongi, a senior lecturer in accounting and finance at the University of Sunderland (Sunderland, UK), writes about his experience as a kidney transplant recipient—having undergone his first kidney transplantation 16 years ago—and reflects on how his personal experience may have been different if he had undergone a pre-emptive transplantation.
Having spent nearly five years on dialysis waiting for my first transplant back in April 2008, at times, it felt like the day would never come. In fact, if I am to be honest, when the call came after 5 years— within the timeframe my consultant had informed me as the average waiting time for transplant match for patients from minority backgrounds—I was thrilled to say the least. Saying I was waiting on the transplant list might suggest life was on hold until the transplant. Nothing could be further from the truth.
From a patient perspective, my strong belief is that a kidney patient would want, preferably, to be restored to their best self before the condition was diagnosed, or when they started feeling unwell, whichever is first. The reality is that dialysis is daunting when you are first told you require it, and even more so when you actually undergo treatment over multiple visits or years. I recall the risks I faced over the duration of a single haemodialysis session, as well as outside within my normal day, such as low blood pressure, muscle cramps, itching, anaemia, bone disease, and fluid overload, amongst others.
The importance of access to pre-emptive transplantation
Patient knowledge is important to our wellbeing and mental health as we navigate a complex treatment regimen. Knowing that we can, and do, have access to pre-emptive transplantation will instil hope and confidence. In fact, I can go as far as saying that such knowledge can literally change a patient’s perception of their condition and future prospects.
How would it have changed my life? Drastically may be an understatement, but when I look back to when I was a young man—then 22 years old at first diagnosis and 37 years old on second dialysis bout (which lasted two years)—I can clearly see the possible benefits that the time saved from dialysis would have had for me. Firstly, and probably most obviously, dialysis meant precious time spent away from my family whilst receiving treatment, recovering from dialysis sessions, and recovering from side effects. Secondly, it would have been of great benefit to my education and career; I mostly felt well enough to continue and, coupled with an excellent employer who made several adaptations and changes to my work routine, I was able to do so. However, I appreciate very well that this is not always possible for a lot of patients; many have to compromise hours worked or the type of job they can do. I started my education journey studying whilst on dialysis back in 2008 and qualified for a university degree in accountancy, the same year I received my transplant. A few years later, I started working for the University of Sunderland where I was once a student and today, I am senior lecturer in accounting and finance.
Education about pre-emptive kidney transplants is essential
Although I may not have a vast knowledge of pre-emptive transplantation, the information I gained from the UKKW symposium truly opened my eyes. It seemed to me that this could be a game changer; yes, it may not benefit all, but if it can transform one life at a time, then we are certainly headed in the right direction. Is it an impossible thought to suggest saving one life can eventually lead to the saving of a million? Perhaps, but such positivity vibrates through my being. As a patient who has gone through multiple challenges, even a rare cancer diagnosis in 2018 due to the immunosuppressive medication, there are clear signals that there is work ahead to be done in transforming lives.
The following is an extract from the recording of my panel contribution at the UKKW panel discussion. All the speakers and presentations at the event made a powerful contribution and had a lasting impression that I hope will carry onwards.
“It was 20 years ago when I was first diagnosed. When Mary [McCaul] first asked me to be part of this, I had no clue what pre-emptive transplantation meant. I recall that the conversation with the doctor was ‘do you want the good news or the bad news?’ I thought ‘sorry, you don’t get to play that game!’ The dialysis, the preparation for that, the cannulation and everything—that (dialysis) was the ‘bad news’. Then he told me about the transplantation which was part of the ‘good news’. However, even that had its own challenges. There is always a caveat. I would like to note that because my diagnosis was acute, I might not have benefitted from pre-emptive transplantation then. But in hindsight, it would have made a difference, because 13 years later after my first transplant failed, I went back on dialysis at the height of the pandemic in 2020, and my kidney function dropped about 10–12%. I was still very active. I tried to ‘bargain’ with my consultant. They rang me before Christmas and said you need to come, to save your bone structure and all these other things that you all know more about than me. My partner then wanted to donate her kidney, so they decided to do the donor work up for that. If it had been done earlier than the time I went back on dialysis, I am certain it would have benefitted me. The biggest frustration for us was the waiting list. Transplantation isn’t the end of the journey, it is the beginning of a new life, of a new journey, but the waiting list is the first hurdle you have to tackle, because without being put on the waiting list first, you cannot get the transplantation! So, most patients who I talk to felt like that. So that time it took my partner to go back and forth, X-Rays, this department, wait for that, for six, seven, eight, or nine months later, she still wasn’t able to give the transplantation. Fortunately, in 2022, I got a call for my second transplant, so that ended up working out for me, but that is not the case for all other patients who don’t have the same resilience or the ability to harness the strength and courage to continue on, without suffering further co-morbidities and other challenges.”
The narrative and experience may differ from patient to patient, or from NHS trust to trust, but the underlying challenges for patients fundamentally remain the same. The challenge to all the clinicians is really to push for pre-emptive transplantation; it makes a difference not only for time, but also for the quality of life for the patient. If my circumstances had been permissible, and a suitable pre-emptive transplant option was available, I cannot even begin to imagine how my life would look today. Patient should be the centre of what we are doing. Hopefully in a couple of years we will have changed lives through transforming transplants.
Declaration: Kudz Munongi is a leader with lived experience, Kidney Research UK ambassador, organ donation champion, and senior lecturer in finance and accounting at the University of Sunderland
