Diary Of A Kidney Warrior

Daily tasks were becoming more difficult

“It was summer 2018 and I had been feeling tired and lethargic and just generally unwell for months. Daily tasks were becoming more difficult and I found myself just getting through the day and then crawling into bed. I just assumed that it was from working hard and that I needed to rest. I had annual leave booked and I was just trying to get there knowing I could rest.

Then, I started experiencing headaches which had me on high alert after suffering from a serious brain condition during my pregnancy. I went to A&E where they ran some blood tests and they decided they needed to admit me. I spent the night on the assessment unit and then I was moved onto a ward.

From my second night in hospital, I developed a fever overnight which continued every night for the next seven weeks!

I assumed that in time my kidneys would bounce back and I would get better

“At that time, they ran extensive tests but couldn’t really figure out what was wrong apart from they knew that my kidneys were failing. After seven and half weeks they finally started me on a course of steroids which stopped the fevers after the second dose. After a further week of being on steroids, they allowed me to go home.

I assumed that in time my kidneys would bounce back and I would get better. After an IV treatment to try and boost my kidney function failed, I had to accept that my kidneys were never going to improve and that this is how things are now.

“Then around May 2019, I had an appointment with my renal consultant where he told me that he thought I was about six months away from being on dialysis. My first reaction was to refuse that this could even happen. I said, “I’m not going to be on dialysis in six months time! I’m going to prove you wrong!” I went to see my Health Coach and just let out my emotions and said that I’d had enough and she changed my thought process by challenging me to live.

From that point I made a real conscious effort with eating a healthy diet and exercising and I managed to hold dialysis off for four years and I started peritoneal dialysis in August last year. After a difficult few months on PD (peritoneal dialysis), I had to switch to emergency haemodialysis due to PD fluid leaking onto my lungs. I’ve been on haemodialysis now since January.

 I wanted something good to come of this

“Whilst I was in the hospital, back in 2018, I remembered saying that I wanted something good to come of this. So, I started a Vlog on YouTube originally called ‘Diary of a Kidney Warrior’, where I spoke about my journey and what I was learning along the way. I enjoyed creating my Vlog but it was just me talking to a camera and I wanted to do something with more interaction.

It  was my husband who suggested that I do a podcast and my first reaction was ‘What’s a podcast!?’ So I looked into what a podcast was and I thought that this was perfect for me. I researched what was already out there and what I would like for my podcast, and from there the ‘Diary of a Kidney Warrior Podcast’ was created.

It’s about the breaking down the clinical language to make the knowledge accessible

“The aim of the podcast was to explore the journey of having kidney disease. Someone may have been given this diagnosis and they’re terrified and think they’re going to die; their world has come crashing down around them. The podcast is there to empower them by providing knowledge, emotional and psychological support around their condition.

It’s not just about talking to health professionals or patients, it’s about the marriage of both and  breaking down the clinical language used to make the knowledge accessible to everyone. We want to encourage people to build a good rapport with their renal team but not to be afraid to challenge them if we don’t understand or agree with a treatment plan.

“We started off with the basics such as ‘what is kidney disease’, ‘what do the kidneys do’ and understanding your blood results. This was because I would constantly see posts, for example, about needing to reduce your potassium as it’s seen as a bad thing in kidney disease – but this should only be dictated by your blood tests and if you don’t need to reduce your potassium then you could be doing more harm than good.

My three key aims are to provide hope, empowerment and education

“The best source of knowledge in my opinion is always from patients who are experiencing the disease day in, day out. We’ve featured some really difficult stories but I always want to end the podcast with a message of hope. My three key aims are to provide hope, empowerment and education.

“Do I have a favourite podcast episode? Well that’s a really hard one to answer. There have been so many great ones. I have a few that stand out for different reasons. Episode one because that’s how it all started and I share my story which is quite emotional for me and it  was my opportunity to bond with my audience. Episode two because it was the first interview I had ever done, a guy called Jerome who shared his amazing story and became a mentor  to me and then the episodes with ‘Aunty Pat’, who’s a healthcare professional who has taught me the most about kidney disease. There are just so many.

Having CKD has transformed my life

“Having CKD (Chronic Kidney Disease) has transformed my life. I guess if I had recovered then I would have just gone back to my job and normal life and carried on; whereas it’s now gifted me this podcast, which does take up hours of my time but I am dedicated to it.

I firmly believe  that everything happens for a reason and I am supposed to be doing this. It’s become my creative outlet. The podcast is one of my good reasons but there have also been many challenging aspects such as the day-to-day symptoms such as the tiredness, dialysis cramps, dealing with blood pressure crashes on dialysis… It’s a lot.

I’m fortunate in that I have a supportive management team within the NHS so I have been able to carry on working but it is very hard.

My ‘kidney family’ have been the most instrumental

“Being diagnosed with kidney disease was such a shock to me. In the early days I reached out to organisations such as Kidney Care UK after finding a lack of information about what to  expect from my hospital. Kidney Care UK has a counselling service which I made use of  and I found it very helpful as at the time it felt like my world had come crashing down around me.

My ‘kidney family’ as I call them (those who I have got to know through groups and my podcast)  have been the most instrumental in supporting me in this journey. As you say  ‘those who feel it, know it’ and speaking with others in a similar situation has given me my own strength. With friends and family, they can only support so far as they can’t really understand what it is like to live with the disease. I feel very blessed to have the support that I do have though.

Finally, for us as patients I feel that it’s important that we seek as much knowledge about  our conditions as possible and don’t be afraid to ask the health professionals questions.

Learn about your treatment, what your bloods mean. Speak up for yourself and if you don’t feel confident about doing that face-to-face then write it down in an email or letter.”

We’d like to thank Dee for sharing her story with us, and highlighting some of the very real aspects of living with Chronic Kidney Disease. He strength and outlook is inspiring, whilst not ignoring the challenges of the condition.

For more information on living with kidney disease you can listen to the Diary of a Kidney Warrior Podcast, or visit the Kidney Care website. You can also find more facts in our news article about World Kidney Day.