Kerry Brown shares her dialysis story with the National Kidney Federation and how her diagnosis and treatment has impacted her life.

“On Monday 17th January 2022, I went to work as normal. I wasn’t feeling great, but couldn’t really put my finger on what was wrong. I felt fatigued, had shaky hands and noticed I didn’t have much of an appetite. I had felt this way for a week or so. That afternoon, I contacted my GP for the third time that week as I also noticed swelling in my face.

I did have COVID a few weeks prior, and the GP thought it was the affects of that, but advised me to make an appointment to have bloods taken which I did. That same evening, whilst bathing my youngest son, I had a very bad nose bleed. I had thick, dark red clots coming out of my nose and I knew something wasn’t right. My gut was telling me I needed to get to hospital to get checked, so I drove to A&E and asked them to do tests. Initially I said I felt I had some sort of infection as I just didn’t feel right at all.

They checked my blood pressure which was very high and I had protein and blood in my urine. Further blood tests showed that I was in kidney failure and was down to only 4% kidney function. I was critically ill.

I was immediately admitted to hospital where they carried out further tests which showed that my kidneys had failed due to a very rare autoimmune disease called Good Pastures Disease (aka Anti GBM disease). I was told that I needed dialysis immediately. I was given an emergency groin catheter to have emergency dialysis and a few days later I was given a neck line, which I still use today.

I was immediately started on a very high dose of prednisone and cyclophosphamide (chemotherapy) to shut my immune system down and stop the disease.

I have been on dialysis ever since and it has completely changed my life.

It’s bittersweet as I’m so grateful for dialysis as it’s keeping me alive, but it’s gruelling on my body, kidney failure has changed my life forever!

I was previously a very healthy, active and outgoing person. I went to the gym every week and enjoyed running. I even ran the London marathon in 2019.

My advice to anyone who feels something is not right to always go with your gut instinct. If you feel something isn’t right then keep pushing until you get further health tests. Dealing with dialysis is very difficult and keeping a positive mental attitude is very difficult too. I find it hard to accept that I have no control over such a massive part of my life.

I like to keep track of my blood results and tests etc and this makes me feel like I do have some sort of control. Eating healthy, avoiding alcohol, not smoking and exercising are all things I would recommend both for physical and mental health to other renal patients out there.

Since starting my dialysis treatment, I have had very little energy, the fatigue can be so bad that some days I can’t do every day activities or fun activities with my children.

I now have to rely on my mum to take my children to school on my dialysis days, (3 days per week) and some days when the fatigue is very bad, I need help with household chores.

I feel like a completely different person now and I really miss the person I was before. Although it’s now 1 year later from my diagnosis, I am still trying to process everything that’s happened and continues to happen to me and my family.

Although this has happened to me it affects my children too. It’s changed my life so much I feel like a shell of my former self.

I have to be careful about what I eat as I have to limit salt, potassium and phosphate. I don’t mind this too much as I’ve always eaten well, however, I’m also now on a fluid restriction which means I’m not allowed to consume more that 800ml - 1 litre of fluid in a day and I find this really challenging.
Dialysis is Iike a part-time job. It takes up so much of my time. I work part time from home now but trying to fit it all in is very difficult and exhausting.

I have always been a very strong and positive person but this has certainly taken its toll on me mentally and every day I find myself battling with my mental health.

I am currently going through testing to be activated on the transplant list. Unfortunately, I have had a couple of abnormal smear tests which have held things up for me. My family and friends are also going through testing to find me a live donor.

The whole process and testing for a transplant is extremely slow which is quite frustrating. I would say this process affects my mental health more than anything. It’s like a rollercoaster!

I do what I can to help my mental health when I do have the energy by going on walks, going to the gym when I feel well enough and plan nice things with my children.  What I have found is that there doesn’t appear to be much psychological support for dialysis patients. Kidney failure and dialysis is a massive change to someone’s life and is a constant mental battle. It would be great to have more support easily accessible for dialysis patient’s mental health.

Since my kidney journey, I have signed up to receive the National Kidney Federation’s Kidney Life magazine and I have also listened to a few of the NKF’s webinars. I find hearing and speaking to other people who have similar experiences very helpful.

I also have a super strong mum who is a massive support to me and the children and she gives me so much encouragement.”