Jacqueline's story: living with CKD and bipolar

After her diagnosis of stage 3 kidney disease, Jacqueline struggled to balance life with CKD and bipolar. But neither has stopped her from travelling the world, from Greece to Tonga.

CKD, bipolar, and lithium carbonate

“My relationship with chronic kidney disease (CKD) started on a seven-year sailing trip at 45 years old. Earlier in my life I had been diagnosed with bipolar, which is characterised by mood swings. I could suddenly go very high, and if I didn’t stop it quickly with the medication I was taking – lithium carbonate – I could flip into a terrible depression. I needed my medication to lead a normal life on my medication but became aware that it could affect my kidney function.

“When I first found out that lithium, when taken in high doses, can damage your kidneys, I saw a kidney specialist who ran some tests. They said my kidney function was 50% so I was diagnosed with stage 3 CKD.

“Recently, my renal (kidney) specialist and therapist have said that they think it was the lithium that did the damage over the years.* It has taken a long time to get to this admission.

“It has been a few years since my diagnosis, and now my eGFR is around 20 and I’m facing dialysis. I am quite nervous about dialysis and kidney disease now – things like fistulas, getting very tired on dialysis. But my local hospital has a special unit for dialysis and that is only 15 minutes’ drive away, plus I’ll be meeting lots of other people in the same situation.

“I have been looking at doing home haemodialysis. I also have meetings with my kidney team every five months or so and last time I asked about transplants because I am quite healthy and fit. I thought at my age I’d not be eligible, but he said it depends on your health and fitness, not on your age. It’s all quite new.

“I’m lucky that I had such a wonderful time on the boat, and nothing can take away my wonderful experiences. I feel very grateful.”

* Research into lithium and its effect on kidneys is still ongoing. If you are taking lithium and are worried about its effects, be sure to chat with your consultant or kidney team.

  • Jacqueline Cope - by river
  • Jacqueline Cope -swimming

Travelling the globe with kidney disease

“I have been to some amazing places across the world. I remember going to very remote islands in the Ha’apai islands in Tonga, 12 or so days’ sailing from New Zealand, and people were living by subsistence – no money, no shops, no electricity. When you meet people who haven’t got anything, they have a lot to give. It gives you a lot of perspective. Their music was astounding. At a church service I sat at the back and three teenagers sang and it was wonderful. They didn’t have radios, televisions, things like that, but they were able to give that community their wonderful voices. It brought tears to my eyes; it was so beautiful.”

  • Jacqueline Cope - on ship
  • Jacqueline Cope - on ship 2

A few months after our first chat, we went back to see how Jacqueline was getting on.

“Thankfully, I am still not on dialysis! When my GFR was around 19 my registrar said she thought I might be on dialysis within the year, but I had a recent face-to-face appointment with the consultant who said it might be three years yet because my health is generally quite good. It was so lovely to hear! Those worries I had last year I don’t have to worry about them for a little while longer.

“I’ve also been chatting with friends and family about kidney donation, and someone said they may be interested – it will probably be through the pool/paired scheme if it happens.

“I suppose it is my lifestyle – and changes I’ve made – that have helped to postpone dialysis. A year or so ago, I was referred to a dietitian. I have pre-diabetes, but that seems to be improving and the dietitian was able to advise on a diet that suited me. At the moment, I’m on a low-protein diet and sometimes if we go out for dinner I’ll go over recommended allowances, but on the whole, I’m sticking to it. I’ve been advised to drink a lot of water, too. When I was first diagnosed it was 1.5 litres of fluid a day, but recently my consultant said it is safe to have 2.5 litres a day.

“I get out and walk and exercise too. I do find that after about 30 minutes of walking I need a sit down to recuperate, but they’ve put me on a drug called dapagliflozin which has helped. 

Jacqueline Cope - portrait

Looking to the future

“Most of my friends are in their 70s and we all have something wrong with us! None of us are in perfect health, it’s about making the most of the time and energy we do have.

“I play the flute and we are doing a recital for a local library’s anniversary. I am planning to visit my son and his wife to go snorkelling in the Red Sea.

“I also write, and I have written a book called Drifting Away”, which is available in print, as an audiobook, and as an e-book. I’d love people to read my stories, which are very personal. I am writing another book, called “Trying life” – it feels like a good title for someone with bipolar!

“I try not to let my kidney disease restrict me. And I feel I am lucky.”

Jacqueline Cope - with book