Dialysis in India

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2015-06-13T04:04:00.000-07:00

(Disclaimer: All information on this website is purely for informational purposes. Please consult your doctor before making any changes to your treatment, diet or lifestyle. The author of this website is not responsible for any consequences of acting on any information published on this website.)

New: See the new section on Food Composition Charts!

When you are diagnosed with kidney failure, you need some sort of renal replacement therapy - some sort of therapy that replaces your kidney function. There are plenty of options. Here is a list of the different options with possible advantages and disadvantages:

1. Kidney Transplant: Top there is the indisputable king, a renal transplant. Despite all the risks, the costs, the possible complications, a kidney transplant continues to offer the best outcomes. For many, the most important benefits of a transplant are the freedom from dialysis and the freedom from fluid restrictions. Despite all what people say about daily nocturnal offering outcomes equivalent to cadaveric transplants, dialysis and its attendant problems, both physical and mental, can be overwhelming. Many would take a transplant any day.

Some would go so far to say that once you are diagnosed with kidney failure and are going to need some form of replacement 'soon', do all you can to get a transplant without having to get on to dialysis at all. Try not to know fluid restrictions at all. This is possible and is happening quite often these days. All it needs is swift, prompt, proactive action.

2. CCPD: Second would be Peritoneal Dialysis connected to a cycler at night. This would free up your days and give you the benefits of minimal fluid and diet restrictions. With portable cyclers already available, travel would also not be an issue.

3. CAPD: Third would be manual Peritoneal Dialysis. Three to four exchanges every day. This offers the advantages of minimal diet and fluid restrictions. The only hassle being the 30-35 minutes three to four times a day that you need to spend on the exchanges. Travel is also possible because most providers nowadays have the facility of supplying bags wherever you go. Ideally the patient should self-administer the exchanges to realize the true flexibility and independence of PD.

4. Daily nocturnal home hemodialysis: The best hemodialysis modality. 7 to 8 hours, 6 to 7 nights a week. The problem is you still need to suffer the needles. There is also a certain element of risk. Blood leaks can happen. Hypotension and cramps can happen. Despite all this, the benefits far outweigh the risks. The full advantage of the modality can be realized only if you self-dialyze. It is difficult but can be achieved with proper training available in some countries (not in mine).

5. Short daily home hemodialysis: Two to three hours everyday at home. The problem with this is the fluid removal rates can still be high. Fluid restrictions will still apply. Risks are reduced because you are most likely awake.

6. In center nocturnal hemodialysis: 4 to 6 times a week, 7 to 8 hours in center. Offers the benefits of longer duration dialysis but you need to go in-center. Cross infections, inflexibilities.

7. Twice/Thrice a week home hemodialysis: Regular hemodialysis except that its at home. The problems of the modality remain. However at least you are saved from the danger of cross infections with viruses such as Hepatitis B, C and HIV.

8. Regular, in-center hemodialysis: Regular hemodialysis in a center. The least favored option. The default for most people. The only option most people are told about.

Food Composition Charts

2011-07-10T23:10:00.000-07:00

Here is a list of common Indian foods along with their Potassium and Sodium contents. All values are mg/100 grams of edible portion of the food item. It also has the content of other minerals.

(Source: National Institute of Nutrition, Hyderabad's publication "Nutritive Value of Indian Foods")

Renal Replacement Therapy options

2011-04-01T20:03:00.001-07:00

When you are diagnosed with kidney failure, you need some sort of renal replacement therapy - some sort of therapy that replaces your kidney function. There are plenty of options. Here is a list of the different options with possible advantages and disadvantages:

6. In center nocturnal hemodialysis: 4 to 6 times a week, 7 to 8 hours in center. Offers the benefits of longer duration dialysis but you need to go in-center. Cross infections, inflexibilities.

8. Regular, in-center hemodialysis: Regular hemodialysis in a center. The least favored option. The default for most people. The only option most people are told about.

Ultrasound scans for people on dialysis

2011-04-01T20:02:00.000-07:00

A patient on dialysis was recently advised to undergo a KUB Ultrasound Scan and they went to a hospital. There, the assisting nurse asked his father, the patient, to drink a lot of water and make sure his bladder was full. Only then could they do the scan.

The family was in a dilemma. They had, all along, been advised to restrict his fluids to a liter per day. Now, here was a nurse asking him to drink a lot more. They explained this to the nurse. The nurse wouldn't listen. She insisted that the scan couldn't be done without a full bladder. The family relented. The patient was made to drink about three liters of water in a span of about an hour. The scan was done.

By next morning, the patient was overloaded with fluid. His feet were swollen and he could barely walk.

This is so outrageous!

First, the bladder wouldn't have been full even if the patient would have had 100 liters of water. Simply because his kidneys weren't functioning. Second, in all patients with kidney failure ultrasound scans are routinely done with empty bladders. There is simply no choice. This shows the complete ignorance and apathy of the staff at the hospital. Again, it is not only this hospital. Most hospitals are in a similar state.

This is a very basic facet of kidney disease that should be taught to anyone who is likely to deal with these kinds of cases. Ultrasound scanning staff to start with. Nephrologists of each hospital should probably take the lead on this and instruct the departments to make this a part of the rules/handbook/training or whatever such mechanism might be available.

If the patient is on dialysis, there is NO NEED FOR A FULL BLADDER. DO NOT DRINK ANY WATER AT ALL. If the team there insists, refuse to do the scan and ask them to speak to the nephrologist.

Aashayein, an event for dialysis patients, held in Hyderabad

2011-02-26T17:33:00.000-08:00

Aashayein, the first-ever exclusive event for dialysis patients, held recently in Hyderabad was a huge success! For the first time, 300 patient with a similar set of problems gathered together under one roof and talked to each other, heard people talking about their problems and most importantly - had fun.

The event kicked off with a welcome address by Vikram Vuppala, MD, NephroPlus, a chain of dialysis centers, where he described how we came up with this idea. Kamal D Shah, the MC of the event, introduced the Hyderabad Kidney Foundation (HKF), its objectives and the plans and then invited the father of Nephrology in Andhra Pradesh, Dr. Gopal Kishen and Joseph Rajshekhar, on dialysis for the last 18 years to formally launch HKF by lighting the lamp.

Then there were a few talks by Dr. Gopal Kishen, Joseph Rajshekhar, Dr. Sree Bhushan Raju, Senior Nephrologist at NIMS, Dr. Krishnan, Senior Nephrologist at Apollo Hospitals and Dr. Haritha Shyam, Chief Dietician, Apollo Hospitals.

Madhur Deep, a transplant recipient shared his experience on getting a transplant. Srinivas Perisetty, husband of Monadipa who is on dialysis gave his perspective on how the family of someone afflicted with kidney disease should cope with this. There was also a Yoga demonstration on some simple but beneficial breathing techniques.

Every talk was interspersed with some entertainment for the patients. There was a mimicry show by Mimicry Hari Kishen, himself a dialysis patient who had the patients in splits with his jokes relevant to people on dialysis, a definite first in India! There was a skit performed by dialysis patients called 'The 7 o' clock shift' which poked fun at the various little incidents that happen in a typical shift in a dialysis unit.

The 7 o' clock shift

Some 'antakshari' type questions were also organized for the audience with a prize for each question.

Patient being given a prize for answering an Antakshari question

The lunch was an elaborate renal friendly affair. Patients could eat everything on the menu for a change without worrying about how much salt it had or whether the vegetables were leached. There was a role reversal of sorts. Caretakers had a very simple menu - biryani and raitha whereas patients had a very elaborate menu! After all it was ~~their~~ our day!

A sumptuous lunch for patients

A simple lunch for caretakers!

After lunch the winner of the best fistula contest was announced and then some patients came and presented their talent. Some did songs, some did jokes. In the end there were two rounds of Tombola. Every patient was given out a bunch of goodies which included injections, a bag customized for dialysis sessions and other stuff mostly relevant to dialysis patients.

Winner of The Best Fistula contest

Dr. Reddy's Labs sponsored this event along with NephroPlus and full credit to both the sponsors for making this happen.

Caregiver burnout

2010-08-27T03:18:00.001-07:00

Kidney disease can be quite taxing for an individual. It is not a short term thing. It is often something you have to live with life-long. Yes, you often have years of peace but it often comes back in some form or another.

This can also take its toll on caregivers, the people around the individual affected by the kidney disease. The serious nature of the disease makes the patient the center of the world around him or her. The entire family's life often revolves around the patient and the disease.

There are surgeries. There are doctor visits. There are hospital stays. There could very well be dialysis which is often a thrice a week thing which takes up half the day. Week after week.

In all this, often the primary caregiver undergoes tremendous stress and frustration. Worse, this is rarely recognized and addressed. The patient occupies centerstage and there is no bandwidth in anybody's mind (including the caregiver's) to recognize that there are problems elsewhere as well.

This is a genuine problem. There are simple solutions however. They may not address the problem entirely. They can help alleviate the problem partially though. And this may be a big relief in itself.

We, the people with kidney disease must realize that our problem affects others too. Most definitely, we are affected the most. No denying that. However, there is a definite effect on our families too. We must be sensitive to this. A simple word of gratitude for them can make them feel much better. Also, we must try to become as independent as possible. Not only will we feel stronger, but this will also reduce the things our families have to do for us.

Primary caregivers must learn to take some time off from the patients and the disease. They must do the things they like to do, away from the patient, without feeling guilty. This will help not only the caregiver but the patient too.

These are little things that make a big difference. Both the patient and the caregiver must appreciate this problem and make a conscious effort to make sure that kidney disease does not take over their lives.

Tanker Foundation in Chennai provides free dialysis

2010-08-11T08:06:00.000-07:00

The Tanker foundation in Chennai provides free dialysis to those who cannot afford it. They also provide free fistula surgeries and have a number of other facilities like supply of erythropoietin, lab tests and even transplants to the needy.

They started off by associating with other hospitals and funding dialysis sessions there. They gradually set up their own centers and are currently serving 140 patients.

They have a fund raiser every year and have the famous Tamil cinema actor Suriya as their brand ambassador. Suriya has also contributed generously for this cause.

They also have a branch in Madurai.

Avoiding Cross Infections in Dialysis units

2010-07-15T07:46:00.001-07:00

Cross infections are a very serious problem facing dialyzors today. Who wants to deal with another chronic, life-threatening condition? Today, let us see what we can do to prevent this.

The best solution of course, is to dialyze at home. When you dialyze at home there is very little exposure you have to possible sources of cross infection. Peritoneal dialysis is anyway, usually done at home. It is also possible to do hemodialysis at home. There are many people in India too who do hemo at home. However, you need to be fairly meticulous and proactive about your health to do this. This is definitely the best way to prevent cross infections.

If, however, you feel home dialysis is not for you, then you should go to a center that follows the CDC guidelines strictly. Make sure that the center does not use common trolleys for starting and closing dialysis sessions, does not use the same betadine, spirit, plasters, gauze and other disposables among diferent patients, has separate sections for positive and negative patients, disinfects machines after every session and is generally clean and hygienic.

In your dialysis center, avoid reusing dialyzers and tubings if you can afford using a new set every session. If you cannot, then atleast try to avoid reusing tubings. Reuse processing is a major source of cross infections. If you must reuse both dialyzer and tubings, ask if the center has separate washing rooms for positive and negative sets. Insist that the tech or nurse who is starting or stopping your session uses a fresh pair of gloves.

Evaluate your center and change if you are not happy with their cross infection prevention measures. No amount of caution is really enough in this matter.

The scourge of cross infections in Dialysis units

2010-07-14T01:04:00.001-07:00

A third of people who are on maintenance hemodialysis eventually get infected with a chronic viral disease. Isn't this shocking?

The disease is usually Hepatitis C. Some people also get infected with Hepatitis B or HIV. Hepatitis C is a disease that affects the liver. 85% of people with Hepatitis C proceed to liver cirrhosis necessitating a liver transplant. As if losing your kidneys was not enough!

What is the primary reason behind this?

There is only one. Human error. Yes. Human error. A person who is already suffering with a chronic condition, who is dialysis dependent is handed another sentence. Simply due to the carelessness of an individual. This is so horrible. And the attitude of most professionals towards this in the dialysis industry is so callous that it can be only described as criminal. They simply do not realize, and for the most part, neither do many patients, what is happening here.

Once a dialyzor is infected with a virus such as Hepatitis C, there are more hurdles for a transplant. Most centers will prefer giving a kidney to a person who is negative (virus free) rather than someone who is positive. Even assuming that the person gets a kidney, the whole treatment after a transplant becomes all the more complex because the doctors have to keep in mind that the immunosuppression drugs can cause a flare up of the Hepatitis C virus causing further damage to the liver. Every decision needs to be taken keeping this in mind.

There are treatments available for Hepatitis C but the chances of success (eliminating the virus) are still quite low. Especially when you're on dialysis. This is because the virus is best treated with a combination of two drugs - pegylated interferon and ribavirin. The first actually reduces the viral load (number of virus copies per ml of blood) but the second actually helps keep it down. Ribavirin, however, causes severe anemia in people on dialysis. So, people on dialysis are treated only with pegylated interferon. This further reduces the chances of successfully treating the disease in the dialysis population.

(I am not trying to paint a dismal picture here. There are many people on dialysis who are successfully treated for Hepatitis C. So, if you're on dialysis and are positive, definitely consider treating it.)

The only point I am trying to make is that due to human error, many lives are being further spoilt. This is something that can easily be avoided. Units must follow stringent processes. There are a set of published guidelines by the Center for Disease Control that lay down the procedures to be followed and the precautions to take to prevent cross infections in dialysis units. All centers must actively follow these guidelines.

The problem with this infection is that you will know you have been infected only after a few weeks (sometimes months). So, no one can nail down why the infection happened and how. You can only guess. The disease itself is indolent. You don't see symptoms until many years. So, medical professionals take this fairly lightly. In young people, however, this is a really serious problem. Being diagnosed with kidney disease itself at a young age can be quite shattering. Having this additional cross to bear is totally unfair.

Home dialysis

2010-07-03T04:49:00.000-07:00

Yes, it is possible to dialyse at home! Home dialysis offers a lot of advantages:

Dialyse at your own convenience
No need to adhere to center schedules and timings
Be completely independent
Get better dialysis

There are two ways you can dialyse at home:

Peritoneal dialysis
Home hemodialysis

Peritoneal dialysis is almost always done at home. You can find out more about Peritoneal dialysis here.

Hemodialysis can be done at home too! You will need to make an initial investment however. You will need the following:

Hemodialysis machine
Reverse Osmosis based water treatment plant
Additional electrical wiring and plumbing

To start with, you will also need to have a technician who comes home to help you do the treatment. Gradually, however, you can learn the ropes and eventually do everything on your own or with the help of a partner who can be your spouse, a parent, a sibling etc.

Unfortunately, home hemodialysis has not caught on too much in India and there are only a handful of people doing hemodialysis at home. There is no training available yet for this. However, it is definitely possible and offers a lot of benefits over dialysing at a hospital or a center.

One major benefit of dialysing at home is that you can dialyse more frequently with ease. Research shows that hemodialysis, when done more frequently, over longer durations and more gently (at low pump speeds and ultrafiltration rates) is much better for the body overall in terms of both short term and long term outcomes.

It is hardly practical to go to a hospital or center every day of the week for long hours. This is much easier when done at home. So, this kind of 'optimal dialysis' is much more doable if you dialyse at home.

It is extremely important however, to get your doctor's buy-in before switching to home hemo. This modality, though closest to ideal, may not be suited to you. Talk to your nephrologist about this and get his/her consent before you consider switching.

You can find more information about the cost of home dialysis in our Cost Comparison page.

The author of this site is on home hemodialysis. He dialyses seven nights a week, seven to eight hours each night in the India city of Hyderabad. You can visit his blog for more details.

You can visit Home Dialysis Central for more details about home dialysis. This is an American site however and not all the information may be applicable to the Indian scenario.

All the best!

Erythropoietin or plain water?

2010-07-02T02:05:00.000-07:00

Most people on dialysis are anemic. They have lower than normal blood counts. The main reason for this is that their kidneys are not performing their duties as well as they should. Apart from cleaning the blood of toxins and excess fluid, kidneys perform a number of other important functions, one of which is producing a hormone called erythropoietin, which stimulates the production of red blood cells. So, when the kidney does not function, the body needs supplements of erythropoietin to maintain healthy levels of RBC.

The form of erythropoietin available widely needs to be maintained at a temperature of around 4 degrees centigrade. This is because erythropoietin is unstable at room temperature. So, for the etryhropoietin to act, it must be kept throughout at 4 degrees centigrade. If the temperature goes above this significantly, the liquid in the injection is not effective at all. It is equivalent to injecting plain water!

This is a very important factor which is taken lightly by many people involved in the distribution and delivery of the injection. The problem is most people do not realize the importance of maintaining the correct temperature. They do not realize that not maintaining the correct temperature renders this extremely expensive injection virtually useless.

Let us take an example in the Indian scenario. A distributor, who receives the injections from the manufacturer may have the requisite infrastrcuture to maintain the tempertaure since he is dealing with a large number or units. He delivers it to the pharmacy who delivers it to the patient through delivery boys. These delivery boys are barely educated and know little about hormones and their effectiveness. Though the pharmacy or their bosses might tell them about this, there is little hope of them giving it the seriousness it deserves.

If there is a break in the 'cold chain', as this is often called, there is little chance of anyone, least of all the patient being told about it. The fear of having to bear the cost of the wasted injection will outweigh any concerns for the well-being of the patients.

Who will know that this happened? No one. The effects of the erythropoietin are hardly immediate. Someone who is not benefitting from the treatment will know a few weeks down the line. And like most things in medicine, no one can pin point anything to one particular incident.

Who is best placed to ensure that this does not happen in the first place? I feel the onus lies on the company making the erythropoietin. No one else has both the interest and the wherewithal to ensure this. Companies have the interest because they want to make sure their brands are seen as effective in the long run. They also have the wherewithal because they control the entire supply network.

Let me explain how they can do this.

The key is the number of stopovers from the time the injection is manufactured to the time it reaches the patient's refrigerator. The lesser the number of stopovers, the lower the chance of breaks in the cold chain. Transfers from one place to another increase the chances of improper temperatures being introduced. If there is a way of minimizing the number of hands through which the injections passes, it must be implemented.

Another important thing that should be ensured is that disruptions in the cold chain are not seen as 'lapses' but rather as 'possibilities'. The manufacturer must be open to taking back a reasonable number of units of the injections if it is found that the cold chain has been broken. The manufacturer must not penalize or make the distributor, vendor or patient bear the loss for this. This will ensure that no one accepts such breaks and immediately 'quarantines' the defective units for replacements from the manufacturers.

This is definitely possible. The writer used Johnson and Johnson's Eprex until a few years back. They had an excellent "No question asked" policy or replacements. If the patient, felt that any lapse in the cold chain had occured, he/she could get a replacement for the injections. The writer switched to Wockhardt's Wepox a few years back. Recently, during a power failure, for many hours the temperature was not maintained. The vendor was called and asked to replace the injections. He was hesitant at first but then agreed if he was given a letter stating the case. The replacements were eventually obtained.

As patients, we need to be proactive about this and insist on replacements. Remember that margins in the medical pharmacy business are extremely high and that should take into account incidents such as these. Companies should absorb such costs. We must never take this lying down. We are paying huge amounts for the injections. The least we can expect is that they work.

Hyderabad - Jain Dialysis Trust

2010-06-25T03:36:00.003-07:00

The Bhagwan Mahaveer Jain Relief Foundation Trust in Hyderabad provides subsidized dialysis treatments to patients who cannot afford the cost of the treatments.

The way they work is on the last Sunday of every month, they give dialysis coupons to patients - one coupon entitles a patient to one dialysis session. They give as many coupons as the patient wants. They have tied up with three hospitals in the city of Hyderabad - Mahaveer Hospital, Challa Nursing Home and Mahesh Hospital. The cost of dialysis at these hospitals is Rs. 800. The trust pays the hospitals Rs. 500 per coupon. The patient pays Rs. 300 to the hospital directly.

The members of the trust monitor the quality of the dialysis offered by visiting the hospitals regularly. They also offer Erythropoietin injections (which most dialysis patients need to take) at subsidized rates. The plan is to offer dialyzers and blood tubings at much lower rates and gradually to open their own dialysis center in the city.

Mr. Jain said that the trust realizes that kidney failure is a problem that needs lifelong dialysis treatments and is not a one time thing. In a country like India where most people pay out of pocket for their medical expenses, being on dialysis can prove to be a severe financial strain on the individual and the immediate family.

Many people simply give up and choose to die. This is the stark reality.

In such circumstances, the trust is actually saving lives and providing hope to hundreds of patients and their families. They currently are helping about 120 patients and funding about 1000 treatments every month.

If you are interested in contributing to this cause, please contact Mr. Inderchand Jain at 98852-98100.

Free dialysis in Ernakulam

2010-06-25T03:34:00.000-07:00

Navajeevanam Free Dialysis Trust provides free dialysis to patients in Ernakulam. Run by the Sathya Sai Orphanage Trust, similar facilities are planned in every district of Kerala.

For more details, visit the website of the trust.

PTH, Calcium and bone health

2010-06-12T23:52:00.001-07:00

The level of Calcium in the blood is very important. Too little Calcium and the bones don't form correctly; your nerves will also not function properly. Too much Calcium and the Calcium starts getting deposited on the walls of your veins and arteries leading to vascular calcification which can be fatal if not corrected in time.

The body realizes this and has a small gland called the Parathyroid gland (4 of them actually) to produce a hormone called the Parathyroid hormone whose sole purpose of existence is to regulate the amount of Calcium in the blood. When the Calcium level in the blood becomes too low, the glands produce more Parathyroid hormone that causes increased absorption of Calcium from the store house of Calcium in the body - the bones. When the Calcium becomes too high, the glands produce less Parathyroid hormone which reduces the amount of Calcium absorbed from the bones into the blood.

So, the amount of PTH being produced depends (inversely) on the amount of Calcium in the blood.

For people on dialysis, the amount of Calcium in the blood is related, among other things, to the amount of Calcium in the dialysate that is used during dialysis. This is in direct contact with the blood (through a membrane). So, too much Calcium in the dialysate causes Calcium coming into the blood from the dialysate. Too little Calcium in the dialysate causes Calcium to move out from the blood into the dialysate. All this affects the PTH directly.

So, when the PTH goes too high or too low, check the Calcium level in the dialysate and tweak that around.

Many people opt for cinacalcet, touted as a wonder drug for PTH. While it may be true that Cinacalcet is a wonder drug, it must be used only when the body's natural mechanism of producing PTH in relation to the Calcium level fails completely.

Before you get on to PD

2010-06-12T23:51:00.001-07:00

There are some important things you should discuss with your surgeon and nephrologist before you get the catheter placed for Peritoneal dialysis.

Discuss with the doctor who is going to place the catheter if he is going to do it laproscopically. Laproscopically means they will use a much smaller incision which means much less healing time.

Talk to him about where exactly he is planning to put the catheter. Make sure the "exit site" is not at the point where you wear your pant belt as this increases the risk of infection.

Also make sure (talk to the doc) that the PD cath comes out of the stomach in such a way that the cath goes downwards rather than upwards from the exit site. Some docs like to try different things. Fair enough. Just make sure they don't try it on you and go with the tried and tested mechanism where you are concerned.

Ask the doc if he can infuse a little PD fluid into the peritoneal cavity immediately after surgery to prevent the tip of the cath from touching the walls of the peritoneum. There might be severe pain for the first few days after cath placement otherwise.

Discuss the company whose transfer set and PD fluid they would recommend. Make sure they choose someone with an excellent network in the country. It makes it very easy to travel. This is important because to change the company, you need to change the transfer set.

Talk about manual exchanges versus using a cycler. Some companies have portable cyclers which gives you additional flexibility. Using a cycler leaves you practically free during the day.

Learn the 6 step washing technique from your doctor or clinical coordinator. Make sure you follow this religiously before EVERY exchange. And also make sure you follow the procedure they teach you to clean the exit site after a shower.

Caring for your fistula

2010-06-12T23:50:00.003-07:00

Proper care must be taken of your fistula to ensure that it gives you years of trouble free service. Follow these tips to prevent fistula-related problems:

- Make sure your blood pressure never falls too low. Low Blood pressures can cause slower flow of blood through the fistula. this can cause the fistula to clot.

- Avoid anything that cause compression or pressure on the fistula for example, things like wristwatches, bag handles or tight clothing. This can also cause the fistula to clot.

- Make sure that the skin around the fistula is clean and healthy. This will help prevent the growth of bacteria in this area. Use a gentle moisturizer to prevent the skin from becoming too dry. Talk to your doctor about which moisturizer is safe for you.

- Check your fistula regularly for signs of redness, itching or tenderness. These are signs of infection.

Remember - an access like your fistula is literally your lifeline! Care for it like you would for your life.

Blogs

2010-06-12T23:50:00.001-07:00

Here are a few blogs related to dialysis or by people on dialysis in India:

1. Life on dialysis: A blog by Samiir Halady of Mumbai. Samiir works full time, undergoes hemodialysis twice a week. Samiir loves trekking and makes it a point to go on treks around Mumbai in the Sahyadri Hills whenever he can. Samiir founded V-Hikerz, a trekking group. Samiir is an inspiration to all of us on dialysis and is a living example that we can do what we love and lead a full life in spite of being on dialysis.

2. Pediatric Nephrology: Dr. Sidharth Sethi is a pediatric nephrologist at AIIMS, Delhi. His blog covers a lot of interesting topics related to pediatric nephrology and nephrology in general. Dr. Sethi is a great inspiration to doctors and patients alike. His embracing of technology in the field of medicine is something every doctor should do in order to stay abreast of the latest happenings around the world and help others stay updated too.

3. Kamal Shah's blog: Kamal develops Mac and iPhone apps for a living. He dialyses on his Fresenius 4008 S machine at night - seven hours on an average six nights a week. Kamal loves to swim and travel.

Working on dialysis

2010-06-12T23:49:00.003-07:00

Our work or what we do for a living is often what defines us. It is quite possible that when we are diagnosed with kidney disease and have to get on to dialysis, there might be a break in our work or education. It is important for us to get back to what we were doing after we attain some level of stability in our medical condition.

Working has many benefits. For one, it allows you to get your mind off your health. You have other things to think about. This can be a huge advantage. The power of the mind is really great. If you constantly think about your health and your problems, you will feel worse than you actually are. If, on the other hand, you think about thinks other than this, you will generally feel better.

The income you get from your work will help in meeting medical expenses. You will feel better about being able to contribute to your expenses, possibly meet them entirely. You feeling of self-worth will also get a dramatic improvement. You will not feel helpless and dependent.

There are a few things you will need to decide however.

The number of hours you will work, the kind of work you will do and how you will adjust your work schedule with your dialysis schedule. For example, you might need to adjust your work hours on the days you have your hemodialysis sessions.

For people on PD, you will need to take a little break to do your exchange. You will also need to consider where you will be doing the day time exchanges. You can do an exchange in the morning and the night at home but one or two exchanges will need to be done at office. Consider this only if you have an absolutely clean place to do them. If you are using a PD cycler, this is not an issue at all since you will be doing most of your exchanges at night while sleeping. If you nee a daytime exchange, in addition to your night time cycles, then you will need to think about this too.

One other important decision you will need to take is whether to tell your colleagues, boss, subordinates etc. about your medical condition. There is no standard advice anyone can give for this. Play it by ear. See what kinds of people they are and then take a decision. Remember that there might be situations when you will be unable to go to work simply because you are feeling unwell. Normal people also skip work because they are unwell. But yours might be a little more frequent. There will also be times when you simply are not 'up to it'. You will need to handle this properly.

By and large, working definitely will make you feel better. Your life will be more fulfilling and meaningful. If you find it difficult to work full time from an office, consider working part time. Or even working from home, There are a number of possibilities these days.

Holidays

2010-06-12T23:49:00.001-07:00

Yes, it is possible to go on holidays while on dialysis!

The world is filled with beautiful places to see. There is so much fun to be had. Never, for a moment think that because you are on dialysis, your ability to travel is finished.

Here are some pointers to traveling on the different modalities of dialysis:

Peritoneal Dialysis

Traveling on PD is very simple. You need to either carry your supplies with you or have them delivered to you at your destination. You can also pick them up from some place close by if the destination you are traveling to does not have a vendor. Once you have your supplies, it is simply a matter of doing your exchanges according to your schedule. Just make sure that you follow the exact same procedures as you do when you are at home. Remember to carry your dressing kits to use once you shower or bathe.

Hemodialysis

There are two options for traveling on hemodialysis.

You can do short trips - weekend getaways, if you will! Try to leave on the day of dialysis, after a session. And come back before your next session. that way, you can easily do a 2 or 3 day trip. Just be careful with your fluids and diet during the trip however. Mostly this should not be a problem since you are going to be busy enjoying the place that you will not have the time to think about fluids!

You can do long trips to places which have a dialysis center. That way, you can continue with your normal dialysis schedule and enjoy the place. Most dialysis centers will accommodate tourists. So, get the telephone numbers of the center preferably at least a month in advance and call them. Speak to the head of the unit and tell them that you need to be dialysed during your trip to the place. Request them for a convenient timing. Most people will be helpful because they would love to see dialysis patients trying to lead a normal life.

Goa is an excellent choice for a holiday for people on hemodialysis. There are two very good units and it is a great place to enjoy! See the section on Hemodialysis Centers for the contact information of the dialysis centers in Goa.

Coping with fluid restrictions

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Fluid restrictions - how much we hate them!!!

Restricting fluid is probably the toughest part about dialysis for most people. The thumb rule given by doctors with regard to the amount of fluid allowed per day is 500 ml + the volume of urine you are producing. What about people who pass no urine? Must they have only 500 ml per day? Very tough!

Let us try to understand the reason behind fluid restrictions. The kidneys as you know, remove the excess fluid from the blood in the body. So, when the kidneys are not functioning adequately, the excess fluid builds up in the body. This can cause the excess water to go into the cells of the body. This causes edema (or swelling of the feet and hands) and it can also cause breathlessness because the excess fluid gets into the tissues of the lungs. This excess fluid can only be removed by dialysis.

The thing with people on dialysis is that we do not drink only when we are thirsty. We drink because we want to drink. In fact, we drink because we've been told not to drink! That's how the human mind is. Crave what you are not allowed to do!

One thing to remember is the internet is filled with people who are in places that are much colder than in India. So, take their figures with a pinch of salt. Generally, in India, it is hot. So, we tend to have more fluid than people in places where the weather is generally cold.

The idea is to not think about fluids. Stay busy. Work, full time if possible. If you're not working, take up a hobby. Watch a movie. When the mind is not thinking about fluids, half the battle is won.

When you must have fluids, try these tips:

- Never gulp down fluid. Always sip it. Relish every sip. Take the most out of every sip. Feel it go down your throat.

- Drink fluids other than water. It is easy to have a large amount of water. It is less easy to have the same amount of fresh lime juice, for example.

- Have very cold or hot fluids. This again helps in reducing the amount consumed because you cannot gulp down a large amount quickly. You can only sip it.

- Reduce the amount of salt. More salt = more thirst.

If you know of a tip that worked for you, let me know.

At the end of the day, NEVER feel guilty if you had too much fluid. Don't let your doctor, family, dialysis staff or even fellow patients scold you for having excess fluids. Tomorrow, if they were to have as fluid restriction, they would probably be less compliant than you are. Tell them this! You have enough to deal with already. You really don't need their advice!

Talking to your doctor

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In India, we respect our doctors. Which is good. They are after all helping us to deal with a chronic illness. Without them, we would not have made it this far.

However, many of us fear our doctors. We are scared to ask them questions about our health. We are scared of offending them. This is wrong.

Remember one thing - the doctor is there to help you. Do not feel shy to ask questions about your condition. Ask him or her to explain in detail to you about what exactly your condition is. Fearlessly ask them questions. Any number of questions.

What is my disease? How did I get it? Why should I not have more water? Why do I need dialysis? Why hemodialysis? Are there other options?

Most doctors generally like to deal with proactive patients. Patients who are well-read and are informed about their conditions. They will generally like to discuss the pros and cons of treatments with their patients.

Since you are reading this, you are probably already aware of the internet and the treasure trove of information it is. Read up all you can about your condition. Read up about the various side effects of kidney disease. Read up on all the medication you are taking. Join a forum or mailing list.

You will be surprised at the drastic improvement in your overall ability to have a healthy discussion with your doctor about your medical condition.

Remember - this is about you. Your health. If you are not proactive about this, nobody will care.

Exercise

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It is very important that people on dialysis do some form of exercise. It helps keep the body and mind active. Start small. If you generally feel very weak and tired and are lying on the bed almost the whole day, take a small step. Maybe, just sit up for a while. Slowly increase this. Then take a few steps around your room. Then walk around your house.

For people who are mobile but don't do any exercise, start by walking slowly for maybe 5 minutes every day. Slowly increase this to 10 minutes and then gradually to half an hour.

Any form of exercise will help. Walking is generally the safest. There are many people on dialysis who do more strenuous things like swimming and trekking. So, it is not impossible to exercise. Of course, check with your doctor before doing anything different from what you are used to.

Exercise will make you feel more energetic and active. It will make you more cheerful.

Try to do something you enjoy. For example, playing a game you like may be more fun and motivating than simply walking. But remember - don't take on too much at once. Take small steps. Gradually increase the level of exercise.

You will feel much better and won't want to give it up!

World Kidney Day

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Today is World Kidney Day. It is a good time to take a few precautions to avoid kidney disease. Kidney disease is becoming increasingly common these days. It is affecting a large number of young people. Nephrologists say that they get between two and five people in the age group of 20 to 30 every week with kidney disease.

This quite alarming. This is mainly due to lifestyle changes. Increased reliance on processed foods, increased use of anti-biotics and analgesics and lack of exercise as the three most important causes of the increasing frequency of kidney disease among the young.

What can you do to avoid kidney disease?

- Avoid processed foods. Try to have food that is natural and fresh
- Avoid anti-biotics and analgesics unless your doctor prescribes them
- Get exercise
- Get yourself tested regularly (every year?) for the basic indicators of kidney disease - GFR, Creatinine, Complete blood picture. Talk to your family doctor about other tests he/she would recommend.

Remember, chronic kidney disease is irreversible. There is no escaping it once you get it. The key is to avoid it. Diabetics, people with hypertension and those with a family history of kidney disease are particularly at risk.

Take your health seriously. Not doing so, will make you regret life-long.

Subsidized/Free Dialysis

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Dialysis is an extremely expensive affair. Many people cannot afford the continuous, sometimes life-long expense of dialysis. Some people simply give up and die. Some extremely generous people have established trusts where they provide subsidized or free dialysis for people who really need this. Here are some of them. Please send us an email if you know of any such facility which is not listed here:

1. Hyderabad

2. Kerala
3. Chennai and Madurai

Hemodialysis Centers

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This page contains some information about hemodialysis centers in different cities in India. Some details about the center and the number to contact in case you wish to travel to the city. It is better to call well in advance to ensure that your slot is guaranteed.

We are going to expand this section to include many more centers along with cost information and maybe a Google map location of the center. If you know of a center that is not listed and is good, please drop me an email at admin@dialysis.org.in.

(Note that dialysis.org.in does not take any responsibility for ensuring that a session is provided or the quality of treatment.)

Goa:

1. Apollo Victor Hospital

Address: Near Railway Station, Malbhat, Margao, Goa
Contact Number: (0832) 2728888, 2726090

2. Vrundavan Hospital

Address: Mapusa, Goa
Contact Number: (0832) 2250022, 2250033, 2256397

3. RG Stone International

Address: Bardez, Goa
Contact Number: (0832) 6640664, 97665 31113, 97664 96639

Hyderabad:

1. Nephroplus

Address: 1178, Beside RNR Auditorium, MLA Colony,
Road No. 12, Banjara Hills, Hyderabad.
Contact Number: (040) 42408039

2. KIMS

Address: Minister Road, Secunderabad
Contact Number: (040) 27725145, 27725000

3. Medwin Hospital

Address: Nampally, Hyderabad
Contact Number: (040) 23202902

4. Apollo Hospital

Address: jubilee Hills, Hyderabad
Contact Number: (040) 23607777

5. Hyderabad Kidney & Laproscopic Center

Address: Malakpet, Hyderabad
Contact Number: (040) 24540666, 24540777, 24540888, 24540999

Mumbai

1. Jaslok Hospital
Contact Number: (022) 66573163

Pondicherry

1. East Coast Hospitals
Contact Number: (0413) 2243160, 2244587

Bangalore

1. M S Ramaiah Memorial Hospital
Contact Number: (080) 23608888, 23609999

2. Nephrolife
Contact Number: (080) 43319999

Lucknow

1. Avadh Kidney Care
Contact Number: (0522) 4022417, 2461550, 2461116 Ext. 211

Dehradun (close to Mussorie)

1. Himalayan Institute of Medical Sciences, Jolly Grant
Contact Number: (0135) 412611

Haldwani (close to Nainital)

1. Sushila Tewari Hospital (Forest Medical College)
Contact Number: (05946) 234104, 234397, 234761

New Delhi

1. Deep Chand Dialysis Center
Address: B-16, New Multan Nagar, New Delhi - 56.
Contact Number: 45552683/88

Optimal Dialysis - PD

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The most important thing to remember about PD is that the actual cleaning of the blood and fluid removal happens between exchanges. Not during the exchanges themselves. So, the key is the amount of time the PD fluid is inside your body. Be aware however, that in PD, it is not necessarily the greater the amount of time the fluid stays inside your peritoneal cavity, the better the dialysis you get.

The rate of toxin and fluid removal increases to start with but gradually tapers off and left for too long, there is actually a possibility of the revers happening - the toxins and water might actually go back from the fluid into your blood. So, the key is to figure out what the optimal time to keep the fluid inside is. this can be done by doing the Peritoneal Equilibrium Test. The test typically gives a result that can be one among the following: Low, Low-average, High-average and High. This basically indicates what kind of a transporter you are. These words refer to the rate of transfer of toxins and water across your peritoneal membrane.

Generally people with either low or low-average PET results will do well to keep the PD fluid inside them for longer periods of time than people with high or high-average PET results. If you are low or low-average, it might be a good idea to consider using a PD cycler which will dialyse you at night.

Optimal Dialysis - HD

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The question often arises as to how much dialysis is necessary? I would rather ask the question - how much dialysis is optimal?

Many of us treat dialysis as the problem. It is important to realize that dialysis is the solution (albeit, non-ideal) to the problem of kidney disease. Kidney disease is the problem that dialysis attempts to solve.

For hemodialysis, generally, the more, the better!

Think of it this way: dialysis is attempting to replace kidney function. The kidneys work 24 X 7 without a break, every day of the year, every hour of the day. So, ideally, we should get dialysis 24 X 7, every day of the year, every hour of the day. Anything less is not ideal from the perspective of the function of removing excess fluid and toxins from the body.

But, obviously, that is not practical. So, it would seem logical to say, we should reach as close to the ideal situation as is practically possible without compromising on the quality of life.

Unfortunately, in India, the most common regimens are 4 hours, thrice a week and 5 hours twice a week. Both of these are wholly inadequate. These give rise to a lot of side effects like hypotension (low Blood pressure), cramps during dialysis and the feeling of being totally weak, drained and unwell after dialysis.

There are two modalities that are slowly gaining acceptance in India too (it is more common in Australia, Europe, US and Canada):

1. Short Daily Hemodialysis
2. Daily Nocturnal Hemodialysis

1. Short Daily Hemodialysis: In this modality, patients undergo dialysis six or seven days a week for 2 to 3 hours each day. The advantage with this therapy over the regular twice or thrice a week dialysis is that the amount of time between two treatments is less. This leads to a smaller build up of fluids and toxins which cause a lower rate of removal of these from the blood during dialysis and hence, is gentler on the body.

2. Daily Nocturnal Hemodialysis: In this modality, patients undergo dialysis six or seven times a week at night for seven to eight hours each night. the advantage of this regimen is that not only is the amount of time between treatments less, but the time for removing the toxins and excess fluids is also more. This enables a much lower rate of removal. The dialysis is gentler and more natural. This modality has proven to have the best outcomes. In fact, there have been some studies to show that the outcomes of this modality can compare with that of a transplant!

Cost Comparison

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The total health related expenditure can be broken up into five categories:

1. Dialysis
2. Erythropoietin
3. Medication, Lab Tests and Doctors consultation

There could be other expenses too if some condition develops that needs to be treated. However, during normal months, these will be the main expenses.

(Note that these are only indicative and approximate costs based on enquiries with different sources. Your vendors / centers might charge different amounts based on various factors.)

1. Dialysis

Peritoneal Dialysis:

This involves the cost of the PD bags of fluid. The fluid is available in different concentrations. The rate of the fluid does not depend on the concentration. The rate depends only on the volume. Most people on CAPD use the 2 liter bags while those on CCPD use 5 liter bags.

There are different companies offering PD treatment in India like Baxter, Gambro etc.

Baxter costs:

CAPD:

Cost of one 2 liter bag: Rs. 170

Total cost of bags assuming 4 exchanges per day, 7 days a week: Rs. 21,000

CCPD:

Cost of one 5 liter bag: Rs. 416

Total cost of bags assuming 2 bags used per night, 7 nights a week: Rs. 25,000

Cost of renting Home Choice machine: Rs. 10,000 per month.

Initial deposit for Home Choice machine: Rs. 1,50,000

In Center (Hospital) Hemodialysis:

Cost of dialysis with new kit: Rs. 2,000 to 3,000
Cost of dialysis with reuse: Rs. 1,250 to Rs. 2,300

Assuming one does thrice a week session and uses a new kit every 2 weeks:

Total minimum cost: Rs. 17,000

Home hemodialysis

Initial cost:

Hemodialysis machine: Rs. 6,00,000 (approximate, depends on the brand)
Reverse Osmosis Water Treatment Plant: Rs. 1,00,000 (approximate, depends on the brand)
Electrical wiring, plumbing and miscellaneous: Rs. 1,00,000

Recurring monthly cost:

Depends on the number of sessions and the duration of each session.

For six nights a week, 7 hours each night, assuming that a new dialyzer and tubing is used every week, approximate cost: Rs. 18,000

2. Erythropoietin:

Erythropoietin (EPO) is a hormone that is produced by the kidneys that helps to regulate the Hemoglobin which affects our energy levels among other things. Many people on dialysis have low Hemoglobin and need to take some dose of EPO. The cost of EPO varies from company to company and depends on the strength (number of units). Here I give approximate values just to get an idea. Please note that cost varies from city to city too.

2,000 units - Rs. 300 to Rs 750
4,000 units - Rs. 865 to Rs. 2000
10,000 units - Rs. 1800 to Rs. 3000

As you can see there is a wide range in the costs. The actual cost depends on the manufacturer and the city.

3. Medication, Lab Tests and Doctor's Consultation:

These vary greatly from month to month depending on the circumstances. For budgeting purposes, I would allocate Rs. 1000 for medication, Rs. 1500 for lab tests and Rs. 500 for doctors consultation.

PD versus HD

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Here are a few aspects to consider while deciding on which modality to adopt:

Diet and fluid restrictions:

With Peritoneal Dialysis, there are generally fewer diet and fluid restrictions as compared to hemodialysis.

Travel

It is generally easier to travel with PD since you can carry your supplies with you. With hemo travel is possible but you can travel for short periods and come back in time for your next session or you can travel to a place where there is a hospital or center that offers dialysis.

Treatment process

PD is considered to be less risky as a process because there is no blood going out of your system as in hemo. Also, PD offers continuous dialysis whereas hemo is intermittent.

Cost

PD is usually more expensive than hemo.

Body Art!!!

In PD, you will need to have a catheter (tube) inside your stomach the outer part of which will be outside your body. The tube is usually wrapped in a small pouch that is fastened around your stomach. With hemo, you will need to get a fistula which may look like a swelling on your arm or wherever the fistula is made. In case of a jugular catheter you will have a couple of small tubes usually near your neck.

Infection

The chances of catching infections is high on PD. If proper washing techniques and sterile procedures are not followed, it is possible that you may catch bacterial infections which may lead to having to remove the PD catheter. In hemodialysis, it is possible that you may catch infections if the proper washing procedures are not followed especially during reprocessing of the dialyser and tubes.

Hemodialysis

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Hemodialysis is a form of dialysis where the blood in the body is continuously removed and passed through an artificial kidney which cleans it. The treatment is an intermittent treatment and is performed ranging from three hours thrice weekly to eight or nine hours six to seven times a week.

There has to be a convenient mechanism to remove the blood from the body and return it to the body after passing through the artificial kidney. For this, an "access" is created. An access can be of different types. An Arteriovenous Fistula is thought to be the best form of access. A small surgery is required for this to be done. The fistula is usually ready within a few weeks of the surgery.

Temporary accesses such as shunts or jugular catheters are used when dialysis needs to be started immediately.

Here is a picture of how your arm might look like after you have got a fistula made:

Peritoneal Dialysis

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Peritoneal Dialysis is a form of dialysis where a special fluid is infused into the peritoneal cavity - a container in the stomach which is surrounded by arteries and veins through which blood flows. The excess wastes from these blood vessels diffuses into the fluid through a semi-permeable membrane that encloses the peritoneal cavity.

Peritoneal dialysis can be done in two main ways:

1. Continuous Ambulatory (CAPD): Here the fluid is infused into the peritoneal cavity and left there for about 3 to 6 hours during which time the dialyzor can go about his routine activities such as office work, exercise, watch a movie, travel etc. After this period, the fluid is removed because it has removed a lot of waste from the blood and cannot remove too much more.

Fresh fluid is infused and the process repeats. The removal of old fluid and infusion of fresh fluid is called an 'exchange'. Most people require about 3 to 4 exchanges. The fluid volume that is infused can vary between 1 to 3 liters depending on the person's weight and size.

2. Continuous Cyclic (CCPD): Here the exchanges are usually performed by a machine called a Cycler. The dialyzor connects to a machine before sleeping at night. The machine then infuses fresh fluid and removes it after 2-3 hours and infuses fresh fluid. Usually the cycles are shorter than in CCPD.

Some people adopt a mix of both CAPD and CCPD. They hook up to the machine and do a few cycles at night, infuse fresh fluid in the morning before getting off the machine and then do one mid-day exchange. This offers better removal of wastes.

For peritoneal dialysis to be performed, a tube is inserted into the stomach to enable fluid removal and filling. It will look something like this:

What is dialysis?

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When kidneys do not work as expected, the functions they are supposed to be performing are impaired. The most important function of the kidneys is to remove wastes from the body. When the kidneys do not work as well as they should, the wastes in the body are not removed effectively.

This build up of wastes in the body is harmful for the body.

Dialysis is a process by which this waste is removed from the body. There are two types of dialysis:

1. Peritoneal Dialysis

2. Hemodialysis

There are several sub-types of these two main types.

What do kidneys do?

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The kidneys are bean-shaped organs, each about the size of a closed fist. They are located near the middle of the back. The kidneys are sophisticated reprocessing machines. Every day, a person’s kidneys process about 200 liters of blood to sift out about 2 liters of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.

Wastes in the blood come from the normal breakdown of active tissues, such as muscles, and from food. The body uses food for energy and self-repairs. After the body has taken what it needs from food, wastes are sent to the blood. If the kidneys did not remove them, these wastes would build up in the blood and damage the body.

In addition to removing wastes, the kidneys release three important hormones:

- erythropoietin, or EPO, which stimulates the bone marrow to make red blood cells
- renin, which regulates blood pressure
- calcitriol, the active form of vitamin D, which helps maintain calcium for bones and for normal chemical balance in the body