Queen of dialysis describes her dependence on a machine | Maddy Warren | TEDxRoyalTunbridgeWells
TLDRThe speaker shares a personal journey with kidney failure and dialysis, highlighting the importance of home dialysis and patient empowerment. They recount their experience with an autoimmune condition leading to kidney loss at a young age, the challenges of hospital-based dialysis, and their transition to self-managed home treatments. Advocating for awareness and innovation in kidney care, the speaker emphasizes the need for better understanding and treatment options, while passionately pursuing an active life beyond their health condition.
Takeaways
- 🏥 The speaker has a personal connection to the Tunbridge Wells dialysis unit, having been on dialysis for 17 years due to kidney failure.
- 💉 Dialysis is a medical procedure that uses machinery to replace kidney function for those with kidney failure or no kidneys.
- 🧬 Kidneys are vital organs involved in waste removal, calcium regulation, red blood cell production, and brain function.
- ⏱️ Dialysis patients typically spend three to four days a week at a hospital or dialysis unit, undergoing a four-hour treatment session.
- 🚱 Between dialysis sessions, patients are slowly poisoned by the toxins and waste that accumulate in their bodies.
- 🌟 The speaker advocates for home dialysis, which can significantly improve the quality of life for patients and is more cost-effective.
- 🔬 At the time of the speaker's treatment, home dialysis was rare, but it's becoming more common, though still only around 10% of patients do it.
- 🏠 The speaker emphasizes the importance of patient education and empowerment to manage their own treatment at home.
- 📈 There is a growing need for kidney dialysis solutions due to an aging population, lifestyle changes, and a more multicultural society.
- 🏥 The current system often leads to patients becoming institutionalized and dependent on hospital care, which is not ideal.
- 💼 The speaker has been involved with Kidney Research UK, a charity that funds research into kidney disease treatments and cures.
- 🎉 The speaker highlights the importance of living life to the fullest despite health challenges, sharing personal experiences of adventure and skydiving.
Q & A
What is the primary function of a dialysis machine?
-A dialysis machine is used to replace kidney function for individuals whose kidneys have failed or are non-existent, by cleaning toxins and waste out of the body and rebalancing various bodily functions.
How often do dialysis patients typically undergo treatment?
-Dialysis patients typically spend three days a week or a large part of their three days undergoing treatment, either at a hospital or a satellite unit.
What are some of the roles of the kidneys in the human body?
-Kidneys control calcium levels in bones, aid in the production of red blood cells and hemoglobin, are involved in memory and brain function, and maintain the acid balance in the blood.
What was the speaker's personal experience with kidney failure and dialysis?
-The speaker experienced kidney failure 17 years ago due to an autoimmune condition and has been on dialysis ever since. They also underwent chemotherapy as a teenager and had their kidneys removed in October 1998.
What is the significance of the Tunbridge Wells dialysis unit to the speaker?
-The significance of the Tunbridge Wells dialysis unit to the speaker is that it represents the broader kidney treatment world where they believe there is an opportunity to make a difference in how people perceive and manage health conditions like kidney failure.
What is the speaker's view on the importance of home dialysis?
-The speaker believes home dialysis is crucial as it extends the quality of life, is more cost-effective, and allows patients to take ownership of their treatment, transforming their experience from merely surviving to actually living.
How has the speaker been advocating for home dialysis?
-The speaker has been advocating for home dialysis by working with healthcare companies, sharing their personal experience, and promoting the benefits of home dialysis to empower patients and medical staff.
What is the 'missing million' campaign by Kidney Research UK?
-The 'missing million' campaign by Kidney Research UK aims to raise awareness about kidney disease, as it is estimated that at least a million people in the UK have or will develop early stages of kidney disease within the next five to ten years, many of whom may not recognize the early signs.
How has the speaker's health condition influenced their perspective on life?
-The speaker's health condition has given them a heightened sense of mortality, leading them to pursue a variety of activities and passions, such as skydiving, to live life to the fullest and not take anything for granted.
What is the speaker's involvement with Kidney Research UK?
-The speaker has been a supporter and trustee of Kidney Research UK for six years and has participated in various fundraising activities, including climbing mountains and completing a skydive.
What challenges does the speaker see in the future regarding kidney dialysis needs?
-The speaker identifies an impending increase in the number of people needing kidney dialysis due to factors such as longer life expectancies, changing lifestyles, and diets, as well as a more multicultural society where certain ethnic groups are more prone to kidney disease.
Outlines
🏥 Life on Dialysis and Its Impact
The speaker discusses their personal experience with kidney failure and life on dialysis, a treatment that replaces kidney function. They highlight the physical and emotional toll it takes, with patients often defined by their health condition. The speaker emphasizes the importance of shifting perceptions and the potential for home dialysis to improve patients' quality of life. They share their journey with an autoimmune condition that led to kidney failure at a young age and their subsequent life on dialysis, advocating for more education and support for patients to manage their own treatments.
🌟 Embracing Life Beyond Dialysis
This paragraph delves into the speaker's personal journey of living with a dialysis machine for over 16 years, totaling thousands of hours. They describe the routine of dialysis, the challenges of machine maintenance, and the sleep disruptions it causes. The speaker also addresses the growing need for kidney dialysis due to demographic and lifestyle changes, and criticizes the current hospital-centric model. They share their involvement with Kidney Research UK, a charity focused on funding research for kidney disease treatments, and their efforts to raise awareness about the early signs of kidney disease through the 'missing million' campaign.
🚀 Pursuing Passions Amidst Health Challenges
The speaker reflects on how their health condition has influenced their perspective on life, leading them to pursue their passions and interests with urgency. They recount their adventures in sports, mountain climbing, and skydiving, emphasizing the importance of living life to the fullest despite health challenges. The speaker also discusses their work with healthcare companies to promote home dialysis as a more patient-empowering and efficient treatment option. They conclude by expressing their transformation from hating their condition to embracing it as a part of their life, advocating for patients to take control of their treatment and live life on their own terms.
Mindmap
Keywords
💡Dialysis
💡Kidney Failure
💡Autoimmune Condition
💡Kidney Transplant
💡Home Dialysis
💡Kidney Research UK
💡Missing Million Campaign
💡Quality of Life
💡Institutionalization
💡Patient Empowerment
💡Mortality
Highlights
Tunbridge Wells dialysis unit is mentioned as a local facility for kidney failure patients.
Dialysis is described as machinery replacing kidney function for those who have failed kidneys.
The speaker shares personal experience with kidney failure and life on dialysis for 17 years.
The perception of health conditions and illnesses and how they define individuals is discussed.
Dialysis patients typically spend three days a week at a hospital or unit for treatment.
The process of dialysis includes blood being cleaned of toxins and waste over four hours.
Kidneys' role in controlling calcium levels, red blood cell production, and brain function is explained.
The importance of kidney transplants as the primary treatment, but not an option for many, is highlighted.
The speaker's autoimmune condition at age 13 led to kidney failure and the need for dialysis.
The benefits of home dialysis, including quality of life and cost-effectiveness, are emphasized.
Only around 10% of dialysis patients dialyze at home currently.
The speaker advocates for more education and support for patients to manage their own dialysis.
The expected increase in the number of people needing kidney dialysis in the coming years is discussed.
The current hospital-centric system for new dialysis patients and its drawbacks are critiqued.
Kidney Research UK's mission to fund research for kidney disease treatments and a cure is mentioned.
The charity's 'missing million' campaign to raise awareness of early kidney disease signs is highlighted.
The impact of living with a life-supporting machine and the perspective it gives on life is shared.
The speaker's pursuit of various activities and passions, including skydiving, is detailed.
A campaign to promote home dialysis and patient empowerment in treatment is being initiated.
The potential of home dialysis in remote areas and countries without it is considered.
The speaker's transition from hating dialysis to embracing it as a controlled part of life is described.
Transcripts
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