My kidney was failing and I knew it was time to get better care
It’s Been a While
For the last long while I've had to prioritise my health. I didn't feel safe in the hospital I attended for the care of my kidney transplant. Nine months ago I had accidentally discovered that my kidney was failing within the next 18 months. The way I'd been treated in that hospital up to that filled me with terror and I knew I had to try for better.
This is the start of my journey to a new kidney and getting the best care everyone deserves.
I knew I had to leave and I knew the journey would put a strain on my weak body. I was still recovering from major illness in my colon so was very weak.
I knew though I had to try for better even with my body waning. Considering how ill I was it was madness to embark on the journey, yet it was even worse to stay. My decision was made.
As Graham Weaver says: "Everything you want is on the other side of “worse first.” But when you can get comfortable being uncomfortable, you can have nearly anything you want in this life". I wish I'd found the webinar with this saying on Youtube back then but, it's reassuring to discover this week.
I'll update you on my journey as I go. This initial episode now s to give a brief outline of how I got here.
So let's begin. I had to slow down, step back from life. Health challenges took over everything. There wasn’t space for much writing, recording, or sharing. Most of my limited energy went into navigating each day, advocating for the care I needed, and figuring out how to keep moving forward. Being weak didn't make this job easy.
One of the biggest lessons I’ve got reminder of again during this time is simple—but powerful: we have to advocate for ourselves, even when we’re exhausted and our backs are against the wall.
Last July, I experienced verbal abuse from a consultant. It wasn’t the first time, but it was the moment I realised I couldn’t accept poor treatment anymore. Something inside quietly said, this isn’t good enough. Even if I didn’t know the alternative yet, I knew I had to try.
In the middle of it all, I was told I should be on dialysis—meaning my kidney was really at end stage. I was in shock; it was the first time I’d heard that I’d reached that point.
New Nephrologist: Finding a New Path
By December, I thought I had found a new path—a new consultant. The first appointment felt promising. By the second, however, the plan didn’t feel right for me: lifelong dialysis, and a medication my body couldn’t tolerate, one that had caused serious side effects in the past.
Despite asking for alternatives, I was brushed off with, “That is it.” I left his office in a daze—heartbroken and terrified about what the future might hold. I cried for days and not even Tony could console me. It was a friend of mine one night told me to use ChatGPT. This proved invaluable. It gave me questions to ask the next nephrologist, it explained medical terms. Gave me an idea of what the path would look like and what my real options were. It gave me hope, a starting point.
I had been told in September 2025 that I only had 18 months before my kidney would finally pack up. Time wasn’t on my side. I’m in stage 5 renal disease, so not having the right support felt like a very real threat. My back was against the wall. No one could stop me from crying. I cried harder than I had in months, racking my brain to figure out what to do next. I felt I wouldn’t get the right care or be listened to. And with my back against the wall, I knew I had to find a way to better care.
A Chance Meeting Changed the Narrative
Then, something small—but life-changing—happened. One cold morning, I went for a walk just to get out of the house. I bumped into a neighbour I hadn’t seen in nearly a year. He suggested a different hospital, a different approach, a new option I hadn’t considered yet.
I went home, Googled the recommended hospital, and found a doctor who just felt… different. Approachable. Clear. Human. And that small detail gave me hope.
Success I Appreciate
After our first appointment, there is a plan. The focus is on preserving my current kidney function for as long as possible. Before, all I was getting was monitoring until it failed. For the first time in months, I felt relief. And more importantly—hope.
It’s been exhausting—mentally, physically, emotionally. There were times it felt easier to stay quiet and accept things, even when they didn’t feel right. But deep down, I knew I deserved better care—and I had to fight for it.
I’m back. Not perfect. Not certain. But hopeful. And that’s a great place to start.
Learning to Live Differently
Now, I’m learning to live differently. Slowly. Intentionally. With awareness of my energy and what I can handle. Some days are full of life; others are for rest. Both are valid.
Over the weeks, I’ll be sharing updates—not a medical diary, but reflections, insights, and small victories. The hope is that you’ll find gems to add to your own bag of resilience habits.
Because whether it’s chronic illness, menopause, or just life throwing unexpected challenges, so many of us are quietly learning to begin again.
(And if all goes well, in a few weeks I’ll be back in business. A few medication adjustments should give me a boost, and I’ll be ready.)
Gratitude
Huge thanks to my husband, Tony, and my close friends who kept me steady throughout all of this. I’m forever grateful for their support. Each of them knew there had to be a better way, and encouraged me to find it.
All I can say to you is this: never give up on yourself, even when the odds look stacked against you. As one of Tony’s friends said, “There has to be a third option.”
Yours in joy,
Marian