Kidney Support Network Podcast

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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. 

https://www.kidneysupportnetwork.com/

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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. 

https://www.kidneysupportnetwork.com/

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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.

https://www.kidneysupportnetwork.com/

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In this episode we talk about Vascular Access. The Access used in Hemodialysis and how patients can maintain health of their vascular access to keep it healther and working for longterm. 

As you may know Hemodialysis is required when someone's kidney's stop working completely or are still working but can not sufficiently or completely remove waste materials from our blood stream. 

The Hemodiaysis procedure is done by taking out blood from the body and waste material and extra fluid/water is removed from it by passing it thru a Filter which is called Dialyzer or an artificial Kidney also. The entire process is controlled by highly sophisticated machines. 

The location or body parts from where patient's blood is taken out or re-injected in the body is called access site. And the access created at the site is named accordingly. 

There are 3 types of access used in Hemodialysis:- 

1. Arteriovenous Fistula (AV Fistula) - “AV” is short for arteriovenous, referring to the connection created between an artery and a vein. Your arteries carry oxygen-rich blood from your heart and lungs to the rest of your body. Your veins then carry oxygen-depleted blood back to the heart and lungs. 

AV fistulas are usually created in the forearm but may sometimes be placed in the upper arm also by a surgeon or a Nephrologist. In this surgical procedure Artery coming into forearm is connected to the Vein.  If possible it’s best to have the fistula placed in your non-dominant arm. 

The Fistula surgery is a minor surgery and is generally performed in a day care setting which means patient is not required to get admitted in the hospital in most of the circumstances.  

Once AV Fistula procedure is done generally it takes 30-45 days for the access to mature for effective usage for Dialysis. 

To maintain an AV fistula, you should: keep the area clean, avoid wearing tight clothing or jewelry on the fistula arm, do not sleep on the fistula arm, avoid carrying heavy objects with that arm, regularly check for a "thrill" (vibration) over the fistula, and immediately report any signs of infection like redness, swelling, or pain;always consult your healthcare provider for specific instructions regarding your fistula care. 

Key points to remember:

• Avoid compression: Don't wear tight clothes, bracelets, or watches on the arm with the fistula as they can restrict blood flow. 
• Sleeping position: Never sleep on the arm with the fistula. 
• Lifting heavy objects: Avoid carrying heavy bags or objects with your fistula arm. 
• Check for "thrill": Regularly feel for a vibration (thrill) over the fistula to ensure proper blood flow. 
• Monitor for infection: Watch for signs of infection like redness, swelling, pain, or warmth around the fistula area. 
• Hand exercises: Perform gentle hand exercises to promote blood flow in the fistula. 
• Blood pressure checks: Always use your non-fistula arm for blood pressure measurements. 

2. Central Venous Catheters (CVC)  - Third option is using a Central Venous Catheter. This access method is what more than 80% of dialysis patients use to start dialysis as CVC catheterisation can be done in a day care procedure and unlike AV Fistula, it can be used for dialysis immediately after placement. They Can be placed in Jugular Vein or Femoral Vein depending on the requriement and conditio

https://www.kidneysupportnetwork.com/

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With best wishes for the New Year 2025, the podcast episode sums up the activities and work Kidney Support Network has done so far and the very briefly also lays out the initiatives planned in 2025. 

Also, We invite you to Kidney Support Network Walkathon 2.0 on Sunday 9th March.

Behind every step, there's a story. A story of resilience, of hope, of overcoming challenges.

At Walkathon 2.0, we honor the stories and strength of those living with kidney disease.

📆 Sunday March 9th

🕒 Time: 6:00 AM

📍 Venue: PSOI club, Nehru Park, Chanakyapuri

We walk & run to raise awareness and support kidney patients & their families. Let's make a lasting impact on the lives of those who need it most.

Register now at https://www.townscript.com/e/KSN-walkathon-20-431204

Be part of something truly meaningful.

Glimpses from Walkathon 2024: https://www.epitomehospitals.com/walkathon2024/ 

Register now at: https://www.townscript.com/e/KSN-walkathon-20-431204

https://www.kidneysupportnetwork.com/

If u liked the podcast, have a query or want to connect with us - leave us a message

This podcast episode is a tale of Love. How a sister's love for her brother gave him lease of new life. 

In this episode I talk with Mrs.Anjana Bhasin, a homemaker, a baker by interest and a proud kidney donor. The episode was recorded on World Organ Donation Day wherein she shares her experience of how her love for her brother gave her strength and courage to donate kidney without being scared. 

Her maternal family suffers from "Autosomal dominant polycystic kidney disease" or ADPKD and out of all her siblings only she was the lucky one to not suffer the disease. Knowing the fact she took her chance to donate a kidney to her brother. 

Key things we can learn from her story:- 

1. Know the disease and talk to your doctors and believe them. 
2. Love has great power and it empowers. 
3. We all need to treat our bodies like temple and use it rather then abuse it. 
4. Everyone has chance to donate kidneys and may be save someone's life. We need to be aware of the science, the associated risks, medical possibilities and then together with our family and doctors take the decision. 

If you want to know more about her or have any questions for her please feel free to send them to us at [email protected] 

To know more about Kidney Support Network, visit our website at the link below:- 

https://www.kidneysupportnetwork.com/

https://www.kidneysupportnetwork.com/

If u liked the podcast, have a query or want to connect with us - leave us a message

Kidney Donation at age 62, Beautiful story of a inspirational lovely couple from Ratlam

In this yet another insightful episode on the Kidney Support Network podcast we talk to Mr. & Mrs.Dube, an inspirational story of a lovely couple. Mr.Dube donated his kidney to Mrs.Dube at the age of 62.

Not only it's a commitment to his wife but Mr.Dube also shows the way to all the men out there. 

In India more than 80% of kidney donors are female. This tells a lot about the kind of social structures, belief systems and biased approaches.

In this episode, Mr. Lalit Dube and Mrs. Sadhna Dube  share their journey with kidney disease, and kidney transplant, actually setting an example for so many people out there confused and scared of kidney donation & transplant. 

Key points you can learn from this story :-

1. How to prepare for a Kidney donation and transplant.
 
2.  How you can actively learn about kidney health, CKD/ESRD, options after kidney failure, kidney donation and transplant. 

3. Men shall feel confident and come forward to donate kidneys. 

4. Engage actively with your treating Nephrologist for informed decision making and better health outcomes.  

5. The biggest learning I personally feel is - How to be a Life Partner and a caring spouse.  

Join us as Mr. & Mrs.Dube share their heartening journey with kidney donation and transplant.  

Know more about Epitome Kidney Urology Institute & Lions Hospital :- https://www.epitomehospitals.com/
Kidney Support Network trust visit our website at the link below:- https://www.kidneysupportnetwork.com/

Follow us on Facebook :- https://www.facebook.com/theksn
Follow us on Twitter :- https://twitter.com/theksnindia

https://www.kidneysupportnetwork.com/

If u liked the podcast, have a query or want to connect with us - leave us a message

"Anshul Pahwa's Odyssey of Resilience : Navigating Life after Kidney Failure, Transplants and Dialysis"

Welcome to another insightful episode on the Kidney Support Network podcast. Today, we have the privilege of talking with Mr. Anshul Pahwa, a remarkable individual who has faced the challenges of kidney failure from a young age.

Anshul's Journey Begins - At the tender age of 18, Anshul started experiencing symptoms of kidney failure. Within three years, he found himself undergoing a life-changing kidney transplant, with his mother selflessly stepping in as his kidney donor.

The First Transplant - The initial transplant was a success, affording Anshul almost a decade of improved health. However, the journey took an unexpected turn when he faced the need for a second kidney transplant.

Navigating a Second Transplant - Anshul courageously embarked on his second transplant journey, overcoming the hurdles that came his way. Unfortunately, the second transplanted kidney eventually ceased to function, leading to a new chapter in Anshul's life.

Life on Dialysis - Presently, Anshul finds himself on dialysis, navigating the complexities that come with this treatment. Despite the challenges, he remains resilient, drawing strength from his experiences.

In this episode, Anshul generously shares his experiences, shedding light on various aspects of his life, including:

1. Coping with Kidney Failure - Anshul delves into the emotional and physical toll of kidney failure and how he coped with its onset at such a young age.
2. Multiple Transplants - He opens up about the rollercoaster of emotions and challenges that come with undergoing not just one, but two kidney transplants.
3. Role of a Nephrologist for Kidney Failure Patients - He talks about the important role his Nephrologist Dr.Vijay Kher, (Chairman, Epitome Kidney Urology Institute & Lions Hospital https://tinyurl.com/DrVijayKher) has played in this 20+ years journey with kidney failure.
4. Balancing Work Life - Anshul discusses how he manages his professional life amidst health challenges, offering insights into perseverance and determination.
5. Relationships Amid Health Struggles - Anshul reflects on the vital support he receives from his caring parents, loving partner who acts as his anchor and pillar, and friends, highlighting the importance of a strong support system.
6. Holistic Approach to Health - Our guest touches upon the role of physiotherapy ( He undergoes physiotherapy sessions under guidance of Dr.Debashish Das., Dr.Vipin Das - at www.myphysio.co.in located in GK II, South Delhi) in his life and the significance of maintaining a balanced diet, with a special mention of Ms.Shonthar, Chief Nutritionist at Qua Nutrition (www.quanutrition.com). 
7. We also discuss the importance of Mental Health in kidney failure patients. 

Join us as Anshul Pahwa takes us on a journey through the highs and lows, offering inspiration and valuable insights for those facing similar health challenges. 

Know more about Epitome Kidney Urology Institute & Lions Hospital :- https://www.epitomehospitals.com/
Kidney Support Network trust visit our website at the link below:- https://www.kidneysupportnetwork.com/

Follow us on Facebook :-

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This Rakshabandhan we share a very special story of How a brother's commitment changed his Sister's life forever. 

In this podcast we talk with Kidney Failure Patient Neha and her brother & a Kidney Donor Mayank. 

Neha talks about how she managed her life on dialysis for multiple years before getting a kidney transplant. She not only got quality dialysis at 7Med Dialysis Clinic at Solanki Hospital of Alwar, but she ensured and managed her health even after dialysis sessions at her home. 

Neha's brother Mayank came forward to donate kidneys to his sister however due to mismatch he could not donate the kidney. However, they participated in Rajasthan's first 3 recipients & 3 donor swap Kidney Transplant wherein Neha got new life in form of a new Kidney. 

This Story is equally of Mayank, Neha's brother, who came forward to donate his kidney. This decision changed his sister's life but came at the cost of personal relationship.

Message from Neha - 

1. Never stop following your passion, your dreams, your work. Just focus on taking care of your health, follow doctor's prescription and continue your life. 
2. Strictly follow your Nephrologist's prescription and suggestion. She shares how her Transplant Nephrologist Dr.Suraj Godara guided her to take right decisions at critical times.   
3. Find a good Dialysis Clinic which can work like a partner in your dialysis journey like I found 7Med India clinic in Alwar.

Message for our listeners from Mayank - 

1. Never Give Up. During kidney failure or transplant journey you might face hardship or get demotivated at times but never give up. You never know when things will suddenly change for good. 
2. Trust Your Doctors.

Things One Can learn from Neha & Mayank's story

1. Never stop dreaming & enjoying your life. Being on Dialysis after kidney failure is an important but a small part of life not life.   
2. Choose a dialysis clinic very wisely. To know what you should look in a dialysis clinic you can refer our podcast on the topic. https://www.buzzsprout.com/2112582/episodes/12465659
3. Follow your Nephrologist's instructions. Doctors work very hard to ensure patients are cured and treated properly. 
4. Majority of Living Kidney Donors in India are Female. This needs to change as quickly as possible and can be done by understanding the right information & staying away from hearsay and misinformation.  

Know more about 7Med India Dialysis Clinics :- https://www.7medindia.com/
Know more about Solanki Hospital, Alwar :- http://solankihospital.com/

Kidney Support Network trust visit our website at the link below:- https://www.kidneysupportnetwork.com/

Follow us on Facebook :- https://www.facebook.com/theksn
Follow us on Twitter :- https://twitter.com/theksnindia

To know more about Mayank Sharma, the man behind the initiative, you may visit his profile at the link below :- https://www.linkedin.com/in/mayanksharmaa/  

https://www.kidneysupportnetwork.com/

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#008

In this very special and inspiring episode of Kidney Support Network Podcast, we talk to Professor Sanjay Chandwani. A Marketing Professor, Management Consultant and a Proud Kidney Donor. He has been involved with prestigious institutes like BIMTECH (https://www.bimtech.ac.in/), MDI Gurgaon (https://www.mdi.ac.in) and FORE(https://www.fsm.ac.in/) & continues to positively impact education landscape in the Country. 

Professor Sanjay shares about his Kidney Donation Story, the thought process he had while taking this decision, how did the family react, how the recipient family responded to his decision of coming forward as a donor and most important how he feels after donating a kidney. 

While sharing the journey he tells how he had to counter and convince his friends & family members about the safety of the procedure and how he could swiftly move beyond few orthodox unscientific beliefs. 

He also shares his journey as a Marketer turning into a Marketing Teacher and then taking up consulting role to uplift and help Medium, Small and Micro Enterprises (MSME) and his personal zeal to help and uplift Schools and small organisations. 

Kidney Donation is not only a valuable gift to recipient but can also bring positive change and many health benefits to the kidney donor as we witness in this podcast. 

Truly we all have power to bring in positive change in someone's life.

A brief profile of Professor Sanjay Chandwani :- https://indeduc.com/sanjay-chandwani/

Key Takeaways :- 

1. Belief in Science and your Nephrologists. 
2. Talk to your family and give them confidence about your decision. 
3. Kidney Donors see positive lifestyle and health changes. 
4. Donors can get back to their routine life within 3-5 days post kidney donation. 

Kidney Support Network trust visit our website at the link below:- https://www.kidneysupportnetwork.com/

To know more about Mayank Sharma, the man behind the initiative, you may visit his profile at the link below :- https://www.linkedin.com/in/mayanksharmaa/  

https://www.kidneysupportnetwork.com/