Diary of a Kidney Warrior Podcast | Kidney Health Podcast

What is Loin Pain Haematuria Syndrome (LPHS), and what is it like to live with the severe, unpredictable pain of this rare kidney condition?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Katie Newell from Liverpool, England, who shares her experience of living with chronic kidney disease (CKD), renal stone disease and Loin Pain Haematuria Syndrome (LPHS).

Katie’s kidney journey began at around 12 or 13 years old, when she developed persistent urinary tract infections. Further investigations eventually uncovered kidney problems and uric acid kidney stones. Despite treatment, Katie continued to produce and pass kidney stones and was diagnosed with renal stone disease and CKD.

Her journey eventually led to a diagnosis of Loin Pain Haematuria Syndrome — a rare condition that has profoundly affected her everyday life.

Katie shares candidly about:

• Her journey from recurrent UTIs and kidney stones to an LPHS diagnosis

Katie describes attacks of excruciating pain that can appear without warning and last for hours or even days. She also explains how the unpredictability of LPHS has affected everything from shopping and driving to socialising and maintaining her independence.

Mental health is another important part of Katie’s story. She speaks openly about experiencing depression and anxiety, seeking support and learning to adapt to a life she had not expected.

Rather than focusing solely on what her condition has taken away, Katie has become passionate about raising awareness of LPHS, rare kidney diseases and invisible disabilities. She hopes that greater understanding — particularly among doctors, nurses and other healthcare professionals — will help others living with the condition feel less alone.

Whether you are living with Loin Pain Haematuria Syndrome, chronic kidney disease, kidney stones, chronic pain or another invisible condition — or you support someone who is — Katie’s story offers insight, encouragement and an important reminder of the value of being heard.

Disclaimer: This episode shares lived experience for educational and informational purposes and should not be used as a substitute for personalised medical advice. Symptoms and experiences can vary between individuals. Always speak with an appropriate healthcare professional about your own symptoms, diagnosis, medicines or treatment.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Follow Diary of a Kidney Warrior:

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Follow Katie on social media:

🎵TikTok @mizz_scouse & @lifewithlphs

📸Instagram & 🐦X (Twitter): @mizz_scouse

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

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📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

How much protein should you eat if you have chronic kidney disease? Is plant protein better for your kidneys than animal protein? And are protein powders and shakes safe for people with CKD or those receiving dialysis?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by renal dietitian Jen Hernandez from Plant Powered Kidneys to explore protein and kidney disease — including the important differences between the protein needs of people with CKD who are not on dialysis and those receiving dialysis treatment.

Jen explains why there isn’t one protein recommendation that is right for every kidney patient and why factors including your stage of kidney disease, dialysis treatment, other health conditions and nutritional status need to be considered.

Dee and Jen discuss:

• How much protein people with chronic kidney disease may need

Jen also explains why traditional renal diet advice that simply tells kidney patients to avoid potassium-rich fruits and vegetables can miss the bigger picture. Individual blood results matter, and animal proteins can also contain potassium and phosphorus.

For people receiving dialysis, the conversation highlights an important difference: dialysis can increase protein requirements. Protein supplements may therefore be useful for some patients who are struggling to meet their nutritional needs, but this should be assessed individually with their renal or dialysis dietitian.

The key message is that protein and kidney disease are not one-size-fits-all. Rather than simply eating “high protein” or “low protein”, understanding how much protein you need — and where that protein comes from — is important.

Whether you are living with chronic kidney disease, receiving haemodialysis or another form of dialysis, trying to understand a renal diet or simply wondering whether plant protein could be a better option for your kidneys, this episode offers practical, evidence-informed guidance.

Disclaimer: This episode is for educational and informational purposes only and does not replace personalised medical or dietetic advice. Protein, potassium, phosphorus and other nutritional requirements vary considerably between people living with kidney disease. Do not make significant dietary changes or start protein or ketoanalogue supplements without discussing them with your kidney care team or renal dietitian.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Follow Diary of a Kidney Warrior:

📸Instagram: www.instagram.com/diaryofakidneywarrior 

📘Facebook: www.facebook.com/diaryofakidneywarrior 

🐦Twitter (X): www.twitter.com/diaryofakidneyw 

🎵Tik Tok: @diaryofakidneywarrior 

📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

🔵 BlueSky: @diaryofakidneyw.bsky.social

💌 Join the Diary of a Kidney Warrior Family Mailing List

Get updates on new episodes, vlogs, newsletters, and more!

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📲 Follow Diary of a Kidney Warrior on WhatsApp

Stay updated with new episodes and exclusive content!

👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r

Follow Jen Hernandez

📸Instagram

https://www.instagram.com/plantpoweredkidneys

📘Facebook

https://www.facebook.com/plantpoweredkidneys

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

📘Facebook: www.facebook.com/kidneycareuk.org

📷Instagram: @kidneycareuk

🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social

📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

Living with chronic kidney disease can bring uncertainty at every stage. What will happen to my kidney function? Will my health change? What if treatment doesn’t go as planned? And how do you stop those “what if?” thoughts from taking over?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Clinical Psychologist Dr Roz Cooper to explore how people living with chronic kidney disease (CKD) and their families can manage uncertainty, worry and anxiety.

Dr Roz explains why uncertainty can feel so difficult. Our brains naturally try to identify threats, solve problems and predict what might happen next. But when you’re living with a chronic health condition, there are some questions that simply cannot be answered with certainty.

The conversation explores:

• What uncertainty actually means and why people experience it differently

Dr Roz shares practical psychological techniques that can help when your mind becomes caught up in future-focused worries. One simple approach is learning to notice a thought for what it is — a thought — rather than automatically accepting the worst-case scenario your mind may be presenting.

Dee and Dr Roz also discuss grounding yourself in the here and now, including a five senses exercise that can be used almost anywhere to redirect attention away from spiralling thoughts and back towards the present moment.

The conversation recognises an important reality: uncertainty is part of living with chronic kidney disease, but there are ways to change how we respond to it.

Whether you are living with CKD, kidney failure or another chronic health condition, or supporting someone who is, this episode offers practical strategies for coping with uncertainty, worry and anxiety.

This episode concludes the four-part Managing Uncertainty series, which has explored uncertainty from the perspectives of healthcare professionals, parents and people experiencing kidney disease and pregnancy.

Disclaimer: This episode is for educational and informational purposes only and does not replace personalised medical or psychological care. If uncertainty, anxiety or worry is significantly affecting your wellbeing, please speak with an appropriate healthcare professional. Where available, you may also wish to seek support from a renal psychologist.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Resources shared by Dr Roz during the podcast

NHS Talking therapies https://www.nhs.uk/nhs-services/mental-health-services/

Apps - Headspace, Smiling Mind

Worry time, Worry tree - https://www.nhs.uk/every-mind-matters/mental-wellbeing-tips/self-help-cbt-techniques/tackling-your-worries/

Reading Well - https://readingagency.org.uk/get-reading/our-programmes-and-campaigns/reading-well/ 

Russ Harris books (list, can find to buy elsewhere - some aimed at therapists but some for the general public) https://www.actmindfully.com.au/product-category/books/

https://diaryofakidneywarrior.getform.com/ojp1p

infoKID provides information for parents and carers about kidney conditions in babies, children and young people.

https://infokid.org.uk/

Follow Diary of a Kidney Warrior:

📸Instagram: www.instagram.com/diaryofakidneywarrior 

📘Facebook: www.facebook.com/diaryofakidneywarrior 

🐦Twitter (X): www.twitter.com/diaryofakidneyw 

🎵Tik Tok: @diaryofakidneywarrior 

📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

🔵 BlueSky: @diaryofakidneyw.bsky.social

💌 Join the Diary of a Kidney Warrior Family Mailing List

Get updates on new episodes, vlogs, newsletters, and more!

👉🏽👉 Sign up here: https://diaryofakidneywarrior.getform.com/rjv47

📲 Follow Diary of a Kidney Warrior on WhatsApp

Stay updated with new episodes and exclusive content!

👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

📘Facebook: www.facebook.com/kidneycareuk.org

📷Instagram: @kidneycareuk

🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social

📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Mental health issues - Every Mind Matters - NHS (www.nhs.uk)

Home - Mind

Samaritans

Tel: 116 123 (freephone)

[email protected]

Chris,

Freepost RSRB-KKBY-CYJK

PO Box 90 90 Stirling FK8 2SA

samaritans.org

Samaritans are open 24/7 for anyone who needs to talk.

You can visit some Samaritans branches in person.

Samaritans also have a Welsh Language Line on 0808 164 0123 (7pm–11pm every day).

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

What happens when your 20-week pregnancy scan reveals that your unborn baby’s kidneys have failed?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Regina, who shares the deeply personal story of her son Milo — from discovering serious kidney problems during pregnancy to childhood kidney failure, peritoneal dialysis and eventually receiving a kidney transplant.

During what Regina expected to be a routine pregnancy scan, it became clear that something was wrong. Further investigations revealed that Milo’s enlarged bladder was caused by an obstruction and the resulting pressure had severely damaged his kidneys.

Regina and her husband suddenly found themselves facing devastating uncertainty about their baby’s future.

Regina shares openly about:

• Discovering kidney problems during her 20-week pregnancy scan

Regina speaks candidly about how clinical language and a lack of emotional support compounded an already traumatic experience. Her story highlights why listening to parents, communicating with compassion and providing joined-up support are so important when a baby is diagnosed with a serious medical condition.

She also describes the realities of becoming a parent carer. Milo spent four years receiving peritoneal dialysis, yet Regina remembers a child who played, attended nursery and preschool and approached life with an incredible joy.

Everything changed when the family learned that an altruistic living donor had been matched with Milo.

Following his kidney transplant, Milo was able to come off dialysis, eat, gain weight, attend school and experience more of childhood. But Regina is also clear that transplantation is a treatment, not a cure. The uncertainty has not disappeared, and every blood test can still bring fears about how long his transplanted kidney will continue to function.

For parents facing a diagnosis of kidney disease or kidney failure in their baby or child, Regina has a powerful message: ask questions, seek information, trust your instincts and never underestimate your role as your child’s advocate.

Whether you are navigating a complicated pregnancy, parenting a child with kidney disease, caring for a child receiving dialysis, waiting for a paediatric kidney transplant or supporting a family through kidney failure, this episode offers lived experience, honesty and encouragement.

Content warning: This episode discusses complicated pregnancy, medical termination, the possibility of stillbirth, serious childhood illness and organ donation. Some listeners may find these subjects distressing.

Disclaimer: This episode shares lived experience for educational and informational purposes and does not replace personalised medical advice. Every pregnancy and every child’s kidney condition is different. Please speak with the appropriate healthcare professionals about your individual circumstances.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Follow Diary of a Kidney Warrior:

📸Instagram: www.instagram.com/diaryofakidneywarrior 

📘Facebook: www.facebook.com/diaryofakidneywarrior 

🐦Twitter (X): www.twitter.com/diaryofakidneyw 

🎵Tik Tok: @diaryofakidneywarrior 

📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

🔵 BlueSky: @diaryofakidneyw.bsky.social

💌 Join the Diary of a Kidney Warrior Family Mailing List

Get updates on new episodes, vlogs, newsletters, and more!

👉🏽👉 Sign up here: https://diaryofakidneywarrior.getform.com/rjv47

📲 Follow Diary of a Kidney Warrior on WhatsApp

Stay updated with new episodes and exclusive content!

👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

📘Facebook: www.facebook.com/kidneycareuk.org

📷Instagram: @kidneycareuk

🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social

📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

infoKID provides information for parents and carers about kidney conditions in babies, children and young people.

https://infokid.org.uk/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

Can you have a successful pregnancy after a kidney transplant? What needs to be considered when planning a family while living with chronic kidney disease?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by osteopath, Pilates instructor, author and mother of two Kay Allardyce, who shares her journey from an unexpected diagnosis of focal segmental glomerulosclerosis (FSGS) to kidney failure, living donor kidney transplantation and motherhood.

Kay was just 24 when swollen ankles and extremely high blood pressure led to further investigations and a kidney biopsy. She was diagnosed with FSGS, beginning a kidney journey she had never anticipated.

As her kidney function declined, Kay’s mother offered to become her living kidney donor. Following a successful kidney transplant, Kay experienced a dramatic improvement in her health — even cycling from London to Paris just months later.

But another important question remained: could she safely start the family she wanted?

Kay and Dee discuss:

• Being diagnosed with FSGS at 24

Kay explains why conversations about fertility and family planning should begin early. Her kidney team discussed her future plans with her even before transplantation, and when she and her husband were ready to try for a baby, she received specialist pre-pregnancy counselling.

Her treatment was reviewed and one of her immunosuppressant medicines was changed before she attempted to conceive. Kay stresses the importance of never making these changes yourself and discussing pregnancy plans with your kidney and transplant teams.

Kay went on to have two children. She shares the realities of high-risk pregnancy, additional appointments and monitoring, pre-eclampsia, giving birth, breastfeeding and managing the exhaustion of caring for a newborn while also protecting her transplanted kidney.

Her story is also one of possibility. From fearing what kidney disease might take away from her future, Kay went on to continue the career she loves, receive the gift of a kidney from her mother and become a mother herself.

For anyone living with CKD or a kidney transplant who is thinking about pregnancy, Kay’s central advice is clear: start the conversation with your kidney team early. Your individual kidney function, medicines and health all need to be considered when deciding whether and when pregnancy may be appropriate for you.

Whether you are living with FSGS, chronic kidney disease, approaching kidney transplantation, living with a kidney transplant or considering pregnancy after transplant, this episode offers lived experience, practical insight and encouragement.

Content warning: This episode contains discussion of miscarriage and other sensitive aspects of pregnancy.

Disclaimer: This episode shares lived experience for educational and informational purposes and does not replace personalised medical advice. Pregnancy following kidney transplantation requires individual specialist assessment. Do not start, stop or change any medication without speaking to your healthcare team.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Follow Diary of a Kidney Warrior:

📸Instagram: www.instagram.com/diaryofakidneywarrior 

📘Facebook: www.facebook.com/diaryofakidneywarrior 

🐦Twitter (X): www.twitter.com/diaryofakidneyw 

🎵Tik Tok: @diaryofakidneywarrior 

📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

🔵 BlueSky: @diaryofakidneyw.bsky.social

💌 Join the Diary of a Kidney Warrior Family Mailing List

Get updates on new episodes, vlogs, newsletters, and more!

👉🏽👉 Sign up here: https://diaryofakidneywarrior.getform.com/rjv47

📲 Follow Diary of a Kidney Warrior on WhatsApp

Stay updated with new episodes and exclusive content!

👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r

Follow Kay Allardyce

📘Facebook: Kay Allardyce, Author

Website: www.kosteo.co.uk

Kay's 5 top tips around pregnancy after a kidney transplant (Kidney Matters Magazine):

https://kidneycareuk.org/get-support/kidney-matters-magazine/spring-2024/

If you were affected by any of the issues raised in this episode contact:

Miscarriage Association

Website: https://www.miscarriageassociation.org.uk/

Helpline: 01924 200 799

Email: [email protected]

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

📘Facebook: www.facebook.com/kidneycareuk.org

📷Instagram: @kidneycareuk

🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social

📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

What happens when an ultrasound scan during pregnancy shows that there may be a problem with your baby’s kidneys? What could this mean after birth — and how do families cope when doctors cannot predict exactly what will happen?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Consultant Paediatric Nephrologist Dr Jan Dudley to discuss kidney disease in babies and children, from abnormalities detected during pregnancy to childhood chronic kidney disease (CKD), dialysis and the uncertainty families can experience along the way.

Dr Jan explains why kidney abnormalities may first be identified during the routine 20-week pregnancy scan, but why it may not always be possible at that stage to determine whether a baby will develop significant chronic kidney disease.

Dee and Dr Jan discuss:

• Kidney abnormalities detected during the 20-week pregnancy scan

Dr Jan describes diagnosis as being like putting together a jigsaw. Each ultrasound scan during pregnancy and each investigation following birth provides another piece of information, helping the healthcare team gradually understand what a child’s kidney health may look like.

The conversation also explores what happens when a baby is born with severe kidney failure. Dr Jan explains the challenges of providing peritoneal dialysis to newborn babies and discusses advances that have made haemodialysis possible in some extremely small babies.

For families whose child has significant chronic kidney disease, uncertainty can continue throughout childhood. Kidney function may remain stable for a period and then deteriorate, with growth and puberty potentially placing additional demands on the kidneys.

Dee and Dr Jan also discuss the emotional burden this uncertainty can place on parents. While healthcare teams can monitor and treat many of the physical effects of kidney disease, it is not possible simply to remove the uncertainty about what the future may hold.

This is where good information, multidisciplinary support and connecting with other families who understand the experience can become particularly valuable.

Whether a kidney abnormality has been detected during your pregnancy, your baby or child has been diagnosed with chronic kidney disease, or you are supporting a family navigating paediatric kidney disease, this episode provides expert information and insight into what may lie ahead.

Disclaimer: This episode is for educational and informational purposes only and does not replace personalised medical advice. Kidney abnormalities and childhood kidney disease can vary significantly between children. Please speak with your fetal medicine, paediatric nephrology or other healthcare team about your individual circumstances.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

Follow Diary of a Kidney Warrior:

📸Instagram: www.instagram.com/diaryofakidneywarrior 

📘Facebook: www.facebook.com/diaryofakidneywarrior 

🐦Twitter (X): www.twitter.com/diaryofakidneyw 

🎵Tik Tok: @diaryofakidneywarrior 

📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

🔵 BlueSky: @diaryofakidneyw.bsky.social

💌 Join the Diary of a Kidney Warrior Family Mailing List

Get updates on new episodes, vlogs, newsletters, and more!

👉🏽👉 Sign up here: https://diaryofakidneywarrior.getform.com/rjv47

📲 Follow Diary of a Kidney Warrior on WhatsApp

Stay updated with new episodes and exclusive content!

👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r

infoKID provides information for parents and carers about kidney conditions in babies, children and young people.

https://infokid.org.uk/

Kidney Care UK

💻 Website: www.kidneycareuk.org

📧 [email protected]

📞Tel: 01420 541 424

📘Facebook: www.facebook.com/kidneycareuk.org

📷Instagram: @kidneycareuk

🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social

📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

What happens when lupus affects your kidneys at just 18 years old — and your life suddenly changes from being a healthy teenager to living with chronic kidney disease?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Khiry, who shares his remarkable journey through lupus, chronic kidney disease (CKD), kidney failure, haemodialysis and two living donor kidney transplants.

Khiry was 18 when persistent joint pain and fatigue eventually led to a diagnosis of lupus. Further investigations revealed that the autoimmune condition had affected both of his kidneys.

Coming to terms with a lifelong condition at such a young age was difficult. Khiry speaks candidly about depression, withdrawing from friends and struggling with the loss of the life he expected to be living.

As his kidney function declined, Khiry eventually needed a kidney transplant. His grandfather became his first living kidney donor, giving Khiry what he describes as a “new lease of life”.

But within months, the transplanted kidney began to fail.

Khiry shares:

• Being diagnosed with lupus at 18

After his first transplant failed, Khiry began haemodialysis while waiting for another donor. At the time, very few people in his life knew he was receiving dialysis. He describes feeling embarrassed about his condition and making excuses when treatment prevented him from joining friends or colleagues.

Ten months later, Khiry received his second kidney transplant from his father.

That kidney would go on to survive an extraordinary series of medical challenges.

Khiry later developed lymphoma and underwent chemotherapy. He subsequently experienced multiple heart attacks following a blood clot, with his family being warned that his organs appeared to be shutting down. He survived, but further challenges followed, including severe steroid withdrawal that left him unable to walk independently and requiring rehabilitation, and later major bowel surgery and a temporary stoma.

Through it all, his second transplanted kidney continued to function.

Khiry speaks openly about the times when everything felt like too much and the role his family played in helping him continue. His experience has also changed how he thinks about sharing his health struggles. Having once hidden his dialysis from others, he now encourages people living with chronic illness not to keep everything inside.

His message to anyone facing kidney disease, dialysis or other serious health challenges is one of hope: keep going, keep talking, and don’t assume that illness means you have to stop pursuing the things that matter to you.

Whether you are living with lupus nephritis, chronic kidney disease, kidney failure, receiving haemodialysis, waiting for a kidney transplant or living with a transplanted kidney, Khiry’s story is a powerful conversation about resilience, support and continuing to live through extraordinary challenges.

Content warning: This episode contains discussion of depression, cancer, chemotherapy, heart attacks, life-threatening illness, hospitalisation and major surgery.

Disclaimer: This episode shares lived experience for educational and informational purposes and does not replace personalised medical advice. Do not start, stop or change medicines or treatment based on information shared in this episode. Always speak with your healthcare team about your individual circumstances.

Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them.

Until next time, take care and choose to live.

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📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Kidney Care UK's Kidney Kitchen

Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).

https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/

Disclaimer:

The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

In this riveting episode of the Diary of a Kidney Warrior Podcast, host Dee Moore invites kidney warrior, Senet Kassaye, to share her transformative journey - from unexpected kidney failure and dialysis to eventual kidney transplantation. Senet's vivid recounts of battling diabetes at a tender age, experiencing a sudden stage 5 kidney failure, and the ensuing life-altering decision to undergo dialysis offer valuable insights into the mental rigour required during such transformative periods.

Through a series of probing questions, Dee dives deep into Senet's narrative, elucidating the complexities of her decision-making process, particularly her choice against the fistula. Transitioning to a hopeful note, the conversation culminates with Senet narrating her joyous experience of kidney transplantation, providing a unique perspective and valuable advice for patients facing sudden kidney ailments and possible lifestyle adjustments.

Senet's story is one of survival and resilience. She details her anticipatory anxiety during the drive to the transplant hospital, the rejection of her pancreas transplant and the relief accompanying the acceptance of her new kidney. Discussing the immense physical pain resulting from organ rejection, she grimly recalls opting for a second surgery to remove her pancreas. That said, the successful compatibility of her new kidney re-echoes the monumental significance of a successful transplant, made more meaningful as it saved her from an exhaustive dialysis routine.

In a segment focused on patients' post-transplant needs, Senet shares some practical advice on maintaining the health of the new organ, staying adherent to the medication routine, and keeping a positive mindset. Particularly touching is Senet's appreciation for organ donors and their families, emphasising England's opt-out organ donation system, and encouraging those considering to opt-out to prioritise lives over fears.

This revealing episode concludes on a hopeful note, powerfully resonating the undying spirit of positivity and looking forward to better times despite significant health challenges. Thus, it delivers an inspiring journey of a brave Kidney Warrior, offering light to others embarking on a similar path - proving that there is hope and life after a kidney transplant.

For updates and more, follow Dee Moore on:

Instagram: www.instagram.com/diaryofakidneywarrior 

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Twitter: www.twitter.com/diaryofakidneyw 

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Follow Senet Kassaye

If you were affected by any of the issues raised in this episode contact:

 Kidney Care UK

•           Website: www.kidneycarekuk.org

•           Email: [email protected]

•           Tel: 01420 541 424

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•           YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Disclaimer: The views and opinions expressed by Guests on this podcast are those of the Guest and do not necessarily reflect the official policy or position of Dee Moore or Kidney Care UK. Any content provided by our Guests are of their opinion, and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.

Welcome back, Kidney Warriors and friends, Mi Amors! This is your host, Dee Moore, thrilled to announce the return of the Diary of a Kidney Warrior podcast with a fresh episode on Monday 8th of April. In the meantime, we're excited to guide you back to our beloved classic episodes.

As our esteemed listeners, you are the heartbeat of Diary of a Kidney Warrior podcast. We sincerely value your thoughts and impressions about our show. Therefore, we welcome you to take a moment and click the link in the description box to share your comments, feedback, and suggestions for future episode topics.

Furthermore, if you're itching to stay in the loop with all our updates, feel free to sign up for our free email mailing list. You can also get our free updates via WhatsApp - just click the links provided below.

Enjoy your bank holiday and until our next conversation, we encourage you to take care and choose to live! 

Classic episodes:

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Apple Podcasts

https://apple.co/3ElC04m

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https://open.spotify.com/show/4Z39vfqTkitEWN6USRHuLP?si=49vHn431R7mxVGbsSGQXhQ

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Kidney Care UK Podcast page

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 Kidney Care UK

•           Website: www.kidneycarekuk.org

•           Email: [email protected]

•           Tel: 01420 541 424

•           Facebook: www.facebook.com/kidneycareuk.org

•           Instagram: @kidneycareuk

•           YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

On this episode of Diary of a Kidney Warrior Podcast, we bring you the powerful story of Emma Kearns, a young peritoneal dialysis patient whose journey is one of resilience, determination, and survival.

From her early diagnosis of kidney disease to battling sepsis, kidney failure, and navigating ableist workplaces, Emma’s experience sheds light on the harsh realities of chronic illness while inspiring hope for others facing similar struggles.

Emma shares how she left behind her life in Liverpool to return to Northern Ireland for a transplant, a move that came with deep emotional challenges, including the fear of catheter surgery and adjusting to dialysis.

We explore the misconceptions surrounding dialysis, the mental toll of being tethered to a machine, and the struggle to maintain a sense of normalcy. She opens up about the painful realities of ‘drain pain,’ living with a catheter, and the impact of public misconceptions about CKD.

Despite these challenges, Emma’s strength shines through. With the support of the TikTok kidney community, she has found a powerful platform to raise awareness about kidney disease, fight stigma, and connect with others on the same journey.

In this heartfelt conversation, we also discuss the barriers young kidney patients face, including the lack of understanding and empathy in workplaces, and the crucial role of social media in building a global support network for kidney warriors.

Join us for this inspiring episode as we explore Emma’s journey—a testament to the resilience, courage, and hope that defines the kidney warrior spirit.

For updates and more, follow Dee Moore on:

Instagram: www.instagram.com/diaryofakidneywarrior 

Facebook: www.facebook.com/diaryofakidneywarrior 

Twitter: www.twitter.com/diaryofakidneyw 

Tik Tok: @diaryofakidneywarrior 

Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw

Pinterest: https://www.pinterest.co.uk/diaryofakidneywarrior/

Follow Emma Kearns

Instagram: 

https://www.instagram.com/_thekidneychroniclesigsh=NGpidjU0bXgwb3dx

Tik Tok: https://www.tiktok.com/@_thekidneychronicles?_t=8klHphQ0ExU&_r=1

If you were affected by any of the issues raised in this episode contact:

 Kidney Care UK

•           Website: www.kidneycarekuk.org

•           Email: [email protected]

•           Tel: 01420 541 424

•           Facebook: www.facebook.com/kidneycareuk.org

•           Instagram: @kidneycareuk

•           YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A

To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]

Young Adult’s Kidney Group (YAKG)

https://www.kidneycareuk.org/get-support/young-adult-kidney-group-yakg/

Disclaimer: The views and opinions expressed by Guests on this podcast are those of the Guest and do not necessarily reflect the official policy or position of Dee Moore or Kidney Care UK. Any content provided by our Guests are of their opinion, and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.