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In this episode of the Kidney Support Network podcast, Aisha Chaudhry shares her personal journey of navigating her mother's kidney disease and the impact it had on their family. Aisha discusses her memoir 'Family Matters', the importance of communication within families during health crises, and the challenges of organ donation. She emphasizes the need for education about kidney health and the significance of living donation. The conversation also touches on cultural perspectives surrounding organ donation and the role of music in coping with grief. Aisha encourages listeners to consider becoming organ donors and to have open discussions about these vital topics.

• Aisha's memoir 'Family Matters' reflects her family's journey through kidney disease.
• Communication within families is crucial during health crises.
• The importance of education in understanding kidney health options.
• Living donation can be a viable option for patients in need.
• Cultural taboos can hinder conversations about organ donation.
• Music can serve as a therapeutic outlet during difficult times.
• The need for more awareness about peritoneal dialysis.
• Family dynamics play a significant role in coping with illness.
• Aisha's experiences highlight the emotional toll of waiting for a transplant.
• Encouraging open discussions about organ donation can save lives.

Show Tags

00:00 - Introduction to Kidney Disease and Patient Experiences

05:01 - Aisha's Journey: Writing 'Family Matters'

14:16 - Family Dynamics and Communication During Illness

23:32 - Coping with Grief and Loss

31:59 - Dialysis Experiences: Peritoneal vs Hemodialysis

39:11 - The Importance of Education in Kidney Health

44:08 - The Kidney Choir: Music as a Healing Tool

47:24 - The Challenges of Living Donation

55:33 - Organ Donation Conversations: A Cultural Perspective

01:02:32 - Call to Action: Becoming an Organ Donor

Family Matters - The Book

Family Matters - A painful yet inspiring story.

Painful because it narrates the struggles, fear and life of a family trying best to find a kidney donor for the family member suffering with kidney failure. Story of sons & daughters racing against time to save their mother.

Inspiring on how pain and suffering can give someone a purpose to create a difference to the world we live in.

Family Matters will inspire many patients and families to come forward, understand about kidney failure bringing more awareness and will motivate more people to consider kidney donation.

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Water - Such a simple thing but but plays a major role in our lives.

Water if not clean can make you very very sick.

However, for Kidney Failure patients who are on Hemodialysis water plays another major important role.

On one hand Kidney Failure patients have to restrict water intake based on their residual kidney function and capacity to remove extra fluid from body.

On other hand a lot of Water is used in the Hemodialysis procedure.

In today's podcast we will talk about the importance of quality of water used in Hemodialysis.

So to draw comparison and to explain the kind of exposure Dialysis patients have with Water lets understand the volume of water we get exposed

A normal healthy human - 5-6 liters per day i.e. 24 hours | (Acceptable TDS limits - Upto 100-200)

A hemodialysis patient - 120 - 192 liters in a 4 hour hemodialysis session (Acceptable TDS limits - less then 10, but strict compliance to AAMI/EU/ISN guidelines)

There are Water purification or treatment plants specifically designed for filtering water to a level where it can be used for Hemodialysis.

There are very stringent international guidelines which are now being adopted in India as well where specific parameters are provided on which filtered water has to qualify. Association for the Advancement of Medical Instrumentation (AAMI) and the European Best Practice Guidelines (EBPG) are two such guidelines. ISO standards, Indian Society of Nephrology - Guidelines

These guidelines define the acceptable limits for various contaminants, including bacteria, endotoxins, chemical impurities, and water conductivity.

In my experience Very few Dialysis centers regularly test their water sources, dialysis machines, and dialysate to ensure compliance with these standards.

As a patient, you shall be aware of these facts and you may also ask your dialysis clinic or dialysis provider to show the water testing report which can provide you details of the quality of water which is being used in your dialysis.

Any compromise in the water quality may lead to health issues and in extreme conditions be fatal for patient's life.

Woh kehte hain na ... JAL HI JEEVAN HAI. To jagrook rahiyee aur apne dialysis program me sacchee partner aur bhagidaar baniyee.

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Dialyzers, which are also known as Artificial Kidneys are the most important component of Hemodialysis. In simple words Dialyzers are filters which are used to filter blood and remove waste products, excess fluid and toxins from the body during dialysis.

Key Points

1. Dialyzer Surface Area -
   1. Dialyzer surface area is measured in Square Meters or generally you will se dialyzers size written as 1.3, 1.5 or 1.8. This 1.3 or 1.8 means that the dialyzer's surface area is 1.3 sqmt or 1.8 sqmt. The more the better. However decision on surface area shall be made in consultation with your treating Nephrologist.
2. Dialyzer Flux
   1. As we had told you that dialyzer has membranes which have microscopic holes. The size of these holes decide which all molecules can come out of blood.
   2. Its a two way process - Higher the dialyzer flux - it can remove larger molecules from body (eg. Beta2M). However, with high flux dialysers there is always a risk of water/dialysate entering into the blood stream. Thus its very important to ensure water quality is as per required standards.
3. Single use Vs. Re-use of Dialyzer
   1. Single Use or Re-Use - Understanding this is very simple. Dialyzers are either used only once and then discarded or its re-used.
   2. Obviously single use dialysis is going to be costly as a new dialyzer is tobe used in every dialysis procedure. In India due to cost considerations most of the patients are dialyzed by reusing dialyzers.
   3. When it comes to re-usage of dialyzers its important to understand that after every dialysis few of these hollow fibers get clogged or closed. Thus overall efficiency of Dialyzer gets reduced. And its essential to ensure dialyzers are not re-used once they fall below a certain efficiency. This is measured with term Fibre bundle volume in technical term.
   4. Considering that there is no manual way of checking fibre bundle volume there are Dialyzer re-processing machines which are used to not only clean and disinfect the dialyzers but also check if the efficiency of dialyzer and cases of damage.
   5. Patients shall be alarmed if they want to take dialysis in clinics where dialyzers are reused and the clinic does not have Automatic Dialyzer Reprocessing machine. And try not to take dialysis in clinics which do reuse of dialyzers and do not have a automatic dialyzer reprocessor machine. In case you can't avoid taking dialysis in such clinics then try and keep the no. of times a dialyzer is re-used to minimum.
   6. Number of reuse - This is one of the very interesting discussions I have had with patients and doctors both. How many times do we re-use dialyzers ? So we all need to understand - if a dialyzer is declared fit to be reused by the automatic reprocessing machine it shall be treated as good to be reused and else not. It can be 3rd time or 10th time. Considering the process is automated without any human intervention it eliminates chances of error or miscalculation.
4. Company / Brand of Dialyzers :- Government of India has fairly stringent norms for dialyse registration & thus for patients dialyzer brand shall not be a major concern. So, if you are asked to pay more for a particular brand of dialyzer then its better to save the money and use it in getting 1 extra dialysis a month or proper medication etc. Again a very personal choice and there is no wrong decision here.

At the end once you are equipped with information around 'Dialyzers' please do talk to your Nephrologist before changing anything or any protocol.

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