My Kidney Journey - the story so far
The Brief
Write a LinkedIn article about my experiences of living with kidney disease, being on dialysis and waiting for a kidney transplant.
My Kidney Journey - the story so far
2018 was probably the first time that my kidney disease really started to hit home for me.
But, wait, I’m getting ahead of myself, let’s rewind back to 1997. Following a routine blood pressure check at age 25 and after meeting with a plethora of specialists I’d been diagnosed with renal nephropathy and reflux (chronic kidney disease). For me, this meant that my kidneys were only functioning at 40% of what they should have been. Since then I’d managed my illness well by taking my blood pressure medication, having a healthy diet, exercise and attending my regular nephrology check ups. Also, I felt really fortunate that I never actually felt ‘ill’.
2018
So jump forward to 2018 and with it - bam! - a huge 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 magically avoid.
2019
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 Addenbrookes 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 arm fulls of blood taken to assess my suitability to be added to the list to receive a kidney transplant. By this time I’d pretty much 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.
Dialysis is the only thing that will keep me alive while I wait for a transplant
At the same time as being ‘worked up’, I started conversations with the dialysis team at my hospital (The Lister Hospital in Stevenage) about the dialysis options available to me. At this point and to quote ‘Bad Boys 2’; “This sh*t just got real” as dialysis was and - still is - the only thing that will keep me alive while I wait for a transplant.
Dialysis is crap, you just need to decide what the least crap version of dialysis is for you
Now, ask anyone who’s ever had dialysis and I’m pretty sure they’d all tell you that it is crap. But you just need to decide what the least crap version of dialysis is for you. So I thought about it and talked to Phil (my husband) and I decided to go for home haemodialysis as that seemed to suit my lifestyle the best. By the way, did I mention that the thought of doing dialysis scared me to death?
Soon, me and Phil 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 until I’d had and fully recovered from my transplant. 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, finally went to the Edinburgh fringe festival and also went back to South Africa to visit friends we’d made when we lived there in the early 2000’s. We had an amazing time in South Africa but after returning in November things sped up again and I had my first ever overnight stay in hospital.
2020
2020 arrived and from then on things moved - at what felt like - a lightning speed. I was activated on the transplant list in January 2020, had a Peritoneal Dialysis (PD) catheter inserted in February and a few weeks later was at The Lister Hospital for my dialysis training. So with my four days of training complete, my PD machine and first month of stock arrived from Baxter on Friday 13th March. You would not believe how many boxes of ‘stuff’ it takes to keep a dialysis patient alive. Honestly, sometimes our home closely resembles a Royal Mail postal sorting office.
I quickly decided it was really important for my PD machine to have a name. So on the night of 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 home APD - rather than home Haemodialysis - would be the best dialysis option for me as I could just ‘plug myself in’ at night and that would leave my days free. The remainder of 2020 went by relatively incident-free and ‘Bob’ was doing her job really well with no complaints from me. Unfortunately, over Christmas and New Year I started to experience some nasty side effects such as Restless Leg Syndrome and insomnia and anxiety due to being ‘tethered’ to ‘Bob’ for eight hours every night.
2021
So in early 2021 I visited the Lister Hospital for my regular check up and the results that came back from my blood tests were not good and the renal team decided to attack the problem from multiple angles. First, I was put on a low-phosphate - goodbye dairy - and low-potassium diet, which when you factor in the low-sodium diet and fluid restrictions I was already on, it made finding food that I could eat pretty hard. Pretty tough going for a self-confessed foodie.
I also had to say goodbye to ‘Bob’ as she just wasn’t cutting the mustard and so in February I swapped to Continuous Ambulatory Peritoneal Dialysis (CAPD). This type of dialysis means that I continually have two litres (equivalent to two kilos) of fluid in my peritoneum which four times a day I drain out and exchange for fresh fluid. It also explains why I now always look like I’m 2-3 months pregnant.
Everybody’s journey is different and you can learn a lot from other people’s journeys.
And onwards
Since starting dialysis I’ve learnt a lot about myself and 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’m not alone as I have a virtual network of people supporting me. 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 that invaluable. Everybody’s journey is different and you can learn a lot from other people’s journeys.
So what does the future hold? Well, I recently closed my business that I started back in 2011. I did this so that I can put all my energy into keeping physically and emotionally well for when I have my transplant, whenever that is. This has opened up a new chapter for me as I’ve just started a role with Kidney Research UK as a Volunteer Community Ambassador.
My hope is that if I can help educate people it could mean someone gets an early diagnosis and never has to endure dialysis or a transplant. That’s the dream anyway.
This is a revised version of a story I originally wrote for The National Kidney Federation back in December 2020.
The National Kidney Federation is unique because, although there are a large number of kidney charities, the NKF is the national kidney charity actually run by kidney patients for kidney patients. Unlike other kidney charities, the NKF has only two roles, campaigning for improvements to renal provision and treatment, and national patient support services.