2018 was probably the first time that my kidney disease really started to hit home for me. If we rewind back to 1997, following a routine blood pressure check at 25, and after meeting with a plethora of specialists, I'd been diagnosed with renal nephropathy and reflux. Since then I'd managed my illness well by taking my blood pressure medication; having a healthy diet; exercising; and attending my regular nephrology check-ups. Also, I felt really fortunate that I never actually felt 'ill'.


So 2018 arrived and with it came a big drop in my kidney function (eGFR) and this was when my nephrologist began the conversation about transplant and dialysis; two things that I'd always known were on the horizon but had secretly hoped I could avoid.


Things came into even sharper relief in 2019, with my kidney function continuing to drop even further and now more rapidly. I met with the Addenbrooke's transplant team and we discussed getting me 'worked up' to be activated on the transplant list. So from August through to December I had a whole raft of tests and armfuls of blood taken to assess my suitability to be added to the list to receive a kidney transplant.

By this time I'd accepted that a transplant was unavoidable and was keen to get activated as soon as possible. My secret hope now was to be lucky enough to have a transplant before needing to start dialysis as the thought of doing dialysis scared me to death.

At the same time I started conversations with the dialysis team at the Lister hospital, Stevenage, about the options available to me and at that time, I decided to go for home haemodialysis; did I mention that the thought of doing dialysis scared me to death?

Soon, my husband (Phil) and I realised that once I was on dialysis and on the transplant list, things were going to change and we'd have to forego foreign holidays for a while. So we decided to jam pack loads of things in beforehand and that year we visited California, completed a 13-mile charity walk around London, and we finally went to the Edinburgh Fringe Festival. We also went back to South Africa to visit friends; we had lived there in the early 2000s.

After returning from South Africa in November, things sped up once again and I had my first ever overnight stay in hospital.


From there things moved - at what felt like - a lightning speed and I was activated on the transplant list in January 2020. I had a PD catheter inserted in February and a few weeks later I was at the Lister hospital for my dialysis training. The team at the home therapies team were amazing and after my four days of training I left feeling confident about dialysing at home and that I had a great group of people supporting me if I needed them.

So with my training complete my PD machine and first month of stock arrived from Baxter on Friday 13th March.

I quickly decided it was really important for my PD machine to have a name, so on Saturday 14th March 2020 I connected myself to 'Bob' and did my first automated peritoneal dialysis (APD) therapy session at home; this was just a few days before the first Covid-19 lockdown.

Just to explain, I'd decided back in January that APD - rather than haemodialysis - would be the best dialysis option for me. So far, it's working really well for me; well apart from the all the cardboard boxes from my monthly Baxter deliveries which means that sometimes our bungalow resembles a postal sorting office! I visit the Lister every three months for tests and I have a video call with my nephrologist every three months. That is my routine.


I do sometimes wonder how different all of this would have been if Covid-19 and lockdown hadn't happened. I think that perhaps starting dialysis has kept my mind focused and away from thoughts about Covid.

2020 and onwards

During 2020, I've learnt a lot about myself and also that I'm much stronger than I ever realised, both physically and emotionally. I've also found how being open and telling people what I'm going through is so important because it helps me feel like I have a virtual network of people there supporting you. I started a WhatsApp group with my friends called 'Kidney Time' which originally was just set-up so that I could let them know when I had, had my transplant but has morphed into a way of keeping friends up-to-date on my health.

I've been lucky enough to meet and talk with people who have had or are waiting for an organ transplant and I've found this really helpful. I've also appeared on a podcast to talk about my experiences of dialysis and being on the transplant list.

I've also realised that most people have very little knowledge of kidney disease and dialysis so if I can help educate just a small group of people then that's a bonus.

I've heard first-hand how organ donation can save, change and improve lives, for both the recipient and their family. This is why it is so important to tell your loved ones your donation decision and please, sign up to the Organ Donation Register.