30 Years With a Transplant: What I’ve Learned About Consistency, Health, and Listening to My Body
Living with a kidney transplant for three decades has taught me so much over the years.
Your body will tell you everything you need to know, if you’re willing to listen.
So, here’s how consistency, nutrition, hydration, and understanding my blood results have helped me stay out of hospital and stay well for 30 years.
- Consistency Beats Perfection
Over time I’ve realised that dramatic diets and big lifestyle overhauls don’t work – not long term anyway. I have tried them all before and learnt from changes I saw in my bloods. Suffice to say, I won’t be coming a Vegan anytime soon 😒
What has worked for me:
- steady routines
- predictable hydration
- a balanced diet
- moderate, regular exercise
- daily habits that don’t feel extreme
I put this into place right at the beginning, as I went to the library learning what I could. Always a curious person anyway and very creative. I looked at various ways of what would work for me from early 1996. Figuring out that I need to make the kidney work and give it what it needs and doing what I can as a patient.
- Learning to Read My Blood Results has Helped
Interpreting my bloods and learning along the way, became one of the most empowering skills I learnt. In fact my old Renal Nurse and my Consultants have probably been faced with a barrage of questions over the years, as I think back with a wry smile.
I began to understand:
- how diet changes affect LDL and triglycerides – more so in recent years
- why creatinine rises with dehydration
- how weight loss alters eGFR
- what raises my urate levels and why I was having gout attacks
- how protein intake changes urine creatinine
- why sugar crashes used to hit hard
- Is Hydration Is One of the Most Underrated Health Tools?
Keeping fluids consistent — not too much, not too little — has helped stabilise:
- blood pressure
- creatinine
- uric acid
- energy levels
- dizziness
- cramping
Consistency here has kept my kidney function predictable for years.
- Diet Should Support You, Not Punish You
Through trial and error I learnt:
- more protein helps me with energy and muscle
- cutting sugar stabilised mood and reduced leg pain
- berries affect gout differently, especially at Christmas 😂
- peas can trigger mild flares
- healthy fats (olive oil, nuts) can reduce inflammation
- stable carbs like oats, potatoes and wholegrains keep my energy steady
Porridge oats has been a consistent breakfast for as long as I can remember. Slow release carbs that help me stay full. As well as giving me the fuel over the years with work and everyday life.
The biggest discovery over all these years?
Feeding the body properly helps more than restricting it. Food is fuel, nothing more.
- Exercise Doesn’t Need to Be Intense to Be Effective
I struggled a lot on dialysis and had no energy whatsoever. Looking back I realised that I was listening to my body and understanding why. Exercise was the last thing I was thinking about, so did none at all on dialysis. Then post transplant as I started to feel better, I started to get more active. Joining my local tennis club and taking part in the British Transplant games. I’ve learnt that the important thing is movement, not calories burned. In fact, walking has been the single best exercise in my view.
- The Body Gives Clues — If You Watch for Them
I’ve learnt to recognise:
- water weight vs. real fat loss – There is a new normal post transplant, so expect some weight gain.
- “sugar withdrawal” phases
- the early signs of gout
- what dizziness means (hydration vs blood pressure)
- foods that trigger inflammation
- when my body needs recovery
- why some weeks feel harder than others
These patterns become clear when you over months and years and why lived experience is our best friend.
- That Lived Experience & Education Makes You Independent
I’ve always asked questions, read books, watched lectures, and studied trends in my own bloods. I was never an academic, in fact missed a lot of school due to my kidney problems. But lets just say if IQ was a qualification, I would be just fine. Point being, you learn to understand yourself and your body and that education comes in many forms.
Learning more reduces fear and anxiety and increases confidence as a patient. That helps us to become independent and helps us to thrive. I accept that is does not always feel that way for us as patients. But on the physical side, its about doing what we can as the patient, to help ourselves and our kidney.
When you understand your body, you stop guessing — and start managing.
- It’s Never Too Late to Change
Going back to cooking from scratch in recent years, has made me stomp out the bad habits. Basically, cutting out the processed foods that were part of my old work pattern, as well as eating far too much.
More recently as I focussed on my mental health and realising food was a comfort for me:
- I’m eating properly
- my energy is returning
- I’m seeing steady weight loss
- my bloods are stabilising
- my joints feel better
- the plan is sustainable for me as I age
I have learnt that small changes add up and even taking a few pounds off, takes load off my knees. The body responds when you treat it with care, not punishment. I know overworking the body does not help, I have seen that in my blood results.
Work, stress, heat and lower kidney function. I learnt to help myself with my mental health, much the same as with physical health. But whereas on the physical side, our Nephrologists, Nurses help us on the physical side. On the mental health side, I realised we have an expertise of our own through lived experience. Speaking to fellow patients on mental health, much the same way as I did early days post transplant.
Hygiene: A Routine That Protects Long-Term Health
One part of my routine the last 30 years that has been absolutely essential, is hygiene. With a transplant, the risk of UTI’s is always higher, and a simple slip in hygiene could turn into a major setback. Over the years I’ve made it automatic, even on the on early 6am -2pm shifts. Back in the days of rubber shower hose on the taps in the bath. Daily washing, good hand hygiene, changing clothes regularly, and paying close attention after exercise or sweating.
It isn’t about being obsessive for me, it’s about protecting the kidney and respecting my donor. I made a vow to my donor to do all I can, so that’s what I do. Just like diet and hydration, hygiene is a habit that builds consistency and stability. When it becomes part of your day without thinking, you reduce the risk of infections and give your body the clean environment it needs to stay healthy.
The Gift of Life
I didn’t know my donor, but I often thing about them. Having been through a lot in my life, they are rarely far from my thoughts. The Gift of Life is dedicated to my donor, who means so much to me.
What 30 years of my transplant has taught me
You don’t need to be perfect, you need to be consistent. Don’t be afraid to ask questions, its ok to be honest about how you feel. Its how we learn as patients and how others can learn from us. Why I gave a speech recently at the Royal London Hospital, speaking to dialysis patients on what to expect. The medications may have changed over the years, but consistency is key in my view.
Listening to listen to our body and those subtle signals it gives us. Learning and acting on them with health from our Consultants, is how I’ve stayed out of hospital for 30 years. If I can share one lesson with anyone on a similar journey, it’s this:
Learn to listen to your body.
Work with it, understand it and what works for you.
Be honest about what has happened to you. Don’t let your diagnosis define you and keep moving forward, one consistent day at a time. Take care and thanks for reading – Stuart
