Saturday, December 26, 2020

In search of the perfect Adadiya

Hyderabad hardly has a winter these days. We just got done with our grand one week of this season recently. When the temperature goes below fifteen degrees Celsius, you will find Hyderabadis have taken out their woollens and have lit bonfires at night. At those temperatures, folks in Delhi would flaunt their shorts and sleeveless tees.

For whatever little cold weather we get, we try to enjoy things you associate with winter. One such favourite of HBCGs (Hyderabad Born Confused Gujjus) is the Adadiya Pak or Adadiya in short. A sweet made out of ground Urad Dal (Skinned Split Black Lentils flour) roasted in ghee and mixed with sugar and spices, the Adadiya is a dish that possibly originated in the district of Kutch.

Parts of Gujarat can have punishing winters (going strictly by Hyderabad standards) and the people there probably invented dishes like the Adadiya and Lapas, another famous winter sweet to give warmth to the body. The spices in these dishes generate heat and helped cope with the falling temperatures.

How much these spices actually helped in warming the body, I do not know. However, the taste got people hooked for life.

My earliest memories of this wondrous sweet are from childhood when a grand-aunt who stayed in Chennai used to send us plastic boxes filled with Adadiyas packed neatly in rows of three garnished with crushed almonds and pistachios. Hansa Mami, my grandmother's cousin brother's wife, was a legendary cook. Her kitchen was busy throughout the year. Come summer, and she and her dutiful daughters-in-law would get busy preparing pickles of myriad kinds. Winter was when things like Adadiya would keep them busy.

Hansa Mami's Adadiyas, though, were truly her best production. A tad spicier than what others made, you could feel the spices tickle your tongue as you took a bite. Some people make the Adadiyas cloyingly sweet. What, pray, is the difference between your regular sweet and the Adadiya, I ask?

Hansa Mami's stocks run out soon, unfortunately. Then it is up to you to figure out other sources. This is not a sweet you get at your traditional halwai. You need to scour the streets of your city to look for shops whose owners are familiar with Kutchi fare. 

In Hyderabad, there is a famous Sri Gujarati Ram Bharose Sweet Mart in the Koti area. This shop had Adadiya one winter. Not half as good as Hansa Mami's, though. One Good Samaritan recently told us that there was one more shop that sold Kutchi stuff, called Paras Agro and Food. My parents went to this shop and found that they stocked Adadiya as well. They also stocked other Kutchi delicacies like the Pakwan (also known as the "Cardiologist's least favourite food" given that they make it using refined flour and deep fry it in ghee). They had good Adadiyas. Well, still not as flavourful as good old Hansa Mami's but then, at least you could get however many you wanted.

My brother, Prasan, doesn't share the passion I have for traditional Indian sweets, least of all Adadiya. He wonders what all the fuss is about? The length of the Hyderabadi winter, also, doesn't logically justify the hunger for Adadiyas. But what the hell. Who says you needed to do whatever is logical?


Thursday, December 17, 2020

Those on Peritoneal Dialysis, beware of laxity due to fatigue


Peritoneal Dialysis is a wonderful therapy. Who would have thought that the body has a membrane within that is suitable for dialysis? It's as if Mother Nature by itself wanted to take care of the scenario where kidneys stopped working. I have always been fascinated by how dialysis can be done by no external machine and simply two litres of sugar water.

Those on Peritoneal Dialysis should consider themselves lucky that they have access to this therapy where there are no needles, fewer diet and fluid restrictions, no regular visits to the hospital, no intra-dialytic complications like cramps, hypotension and so on, no dependence on others for your dialysis. What's not to like?

Well, there are people who hate this modality. Their experience has not been good. They are happy with Hemodialysis. I fully understand.

However, for those on PD, I have a word of caution. Beware the laxity that sets in due to fatigue.

First, I will recount a personal experience. 

I started PD in 1999, a few months after my failed kidney transplant. Nobody told me about this therapy. I learnt about it on the internet. This always bothers me. Why aren't patients who are diagnosed with kidney failure even told about this modality? Why is the default always hemodialysis? Why not let the patient decide? 

I got to know about PD on the internet and asked my nephrologist if I could do PD instead of hemodialysis after my kidney transplant failed. He said Yes. 

I settled into a very comfortable life on PD. My life became completely normal. I started working full time. I was traveling. I was playing Table Tennis.

A few years down the line, I was introduced to Harish Natarajan who was at that time heading Baxter's Renal Division in India. I was using Baxter's PD Fluid. Harish and I stayed in touch over email and phone calls. Baxter organised a PD conference in Hyderabad and Harish invited me to attend. While waiting for one of the sessions to start, I was chatting with Harish and his colleagues from Baxter when Harish told me that I needed to then be very careful about my hand hygiene and basic sterile precautions as this was typically when fatigue set in and people tended to take chances and not adhere to the protocols completely. This could result in infections which were typically very difficult to treat.

I made a mental note. But maybe did not do too much about it.

About a year later, the Tsunami happened and a few months after that I got my first exit site infection and a series of infections followed. The Pseudomonas Aeruginosa bacteria (see picture above) was my nemesis during the next year or so where we tried to save my PD catheter and my Peritoneal Cavity function. We did not succeed and I had to give up PD.

While there are doubts about why the infection happened - whether it was due to the Tsunami water or the carelessness that set in due to the fatigue - it is true that the infections made me lose my access to PD forever. This was a devastating blow for me as I loved the therapy and the freedom it gave me.

So, I would like to say to all those on PD. Never ever take chances with hand hygiene. Do the hand wash - all the six steps - very diligently. Never take short cuts. Make sure you are cleaning your exit site as per the protocol prescribed to you. Do not miss even a single thing advised by the doctor or your PD Clinical Coordinator. 

Remember, even a single mistake can cause you to lose access to the entire therapy for life. Even a single instance is enough for a bacterium to make its home in your body. And this is one unwelcome guest that rarely leaves your home. 

Saturday, November 21, 2020

I'm interviewing Maddy Warren, 22 years on dialysis and marathon runner

I heard about Maddy Warren on the Home Dialysis Central Facebook group. I was amazed at how someone on dialysis can run a marathon. Sandeep, my NephroPlus Co-founder had told me to join him in the Hyderabad marathon a few years back but I refused outright. It was unthinkable. Running or even walking 42 km was physically just not possible for me.

And yet, here she was. Madeleine Warren from the UK who ran the London Marathon in 2018 to celebrate her twenty years on dialysis. How cool is that?

When I read more about her, I realised that there were many similarities between both of us. Both us got diagnosed with kidney disease around 1997. Both us were on Peritoneal Dialysis for about five years. Both of us got a kidney transplant from our parents (she from her father, me from my mother). Both transplants did not work. Both of us switched to Daily Nocturnal Home Hemodialysis. Both of us do six nights a week. She does about six hours each night. I do about seven and a half.

That's where the similarities end though.

While my physical activity is limited to a half hour swim and another half hour of strength training each day, Maddy ran a marathon, has completed more than three hundred sky dives, has walked about 90 miles along London's Thames river, has climbed the highest mountain in the UK and two other mountains, goes horse riding, loves skiing and so on. Plus the dedicated hours of training she puts in to be able to stay fit to be able to do all this.

Make no mistake. Staying this fit is a rarity among dialysis patients. Kidney failure messes up the body's biochemistry. Maddy is very clear. It is her long hours on the dialysis machine that enable her to do all this. 

I believe there is one more ingredient in this. Her positive attitude. There are many who do her kind of dialysis. Yours truly included. But for the rest of us, this level of physical activity is not conceivable in the least. Maddy is the best example I know of the mind ruling over the body.

I got in touch with Maddy a few weeks back requesting to interview her for Indian dialysis patients and thankfully, she agreed. The event is scheduled on Monday, the 23rd of November at 4:30 PM India time and 11 AM UK time. Do join me at NephroPlus's Facebook Page.



Here are 3 videos where Maddy talks about her life and her fitness routine:



Saturday, September 26, 2020

Reflections on aHUS Awareness Day

 aHUS Awareness Day is observed on 24th September every year. The date was picked by members of the aHUS Alliance, an umbrella group of patient organisations from around the world. It started being observed only 5-6 years ago as that was around when the Alliance was formed. Every year, a flurry of activity is seen around this date. People from all over the world participate in various activities like videos of hope by patients, dissemination of information among the public and a lot of education about the disease.

And yet, with every passing year, while some countries move from one successful drug to another, Indian patients continue to die or be condemned to a life on dialysis. Some do recover after the initial flare but these are only a small proportion of the total.

I started The Atypical HUS India Foundation a few years back with the intent of providing information and support to Indian aHUS patients and their family members. When I was diagnosed way back in 1997, there was hardly anything that was known about this disease. We scoured the internet only to find small bits of information here and there. I thought having a website and social media accounts that provided information and support to Indian patients would provide at least some hope.

I was only partially correct.

When people get diagnosed and come across the aHUS India Foundation, their first question is what is the solution? They somehow cannot get their heads around a diagnosis that has a cure but is not available in India. What are the other options, they ask? My heart sinks when I get this question because I hate to have to tell them that there are no other options. Is there a way to get Eculizumab to India? There are some shady companies that claim to be able to get it to India but the quality is doubtful and the price is beyond the reach of anyone but maybe the top 0.0001% of Indians.

The US is now moving on from Eculizumab to Ravulizumab. The infusion frequency is reduced and patients would need to go only once every 1-2 months, roughly half the number of visits that Eculizumab required. Other developed countries will soon evaluate this new drug as well.

Several other drugs are supposed to be in various stages of clinical trials. The concern however is even if these drugs get approved eventually (several years from now), will they ever be brought to India? How would they be priced?

The curse of this disease is many fold. On the one hand is the severity of the disease. On the other hand is the miniscule number of patients that exist. Any drug that pharmaceutical companies develop has only a few patients to profit from. So each patient is charged a bomb.

I hate to sound negative. But the situation is hopeless. Unfortunately, I just do not see things changing in the near future at all. In India, even basic healthcare problems are far for being resolved. Just to take one example, India's infant mortality stands at 32 per 1000 births compared to the US's 5.7 and the UK's 3.9. This is hardly surprising when you see that India spends about 3.6% of its GDP on healthcare (of this, government spending is a shocking 1.3%) while the US spends about 18% and the UK spends about 10%

So, the problems are aplenty and the resources are few. In this dire state of affairs, how can we expect the Indian government to spend massive sums of money on drugs that will save only a few lives? If the money spent on one patient's cost of Eculizumab is spent on improving infant mortality for example, by strengthening the primary healthcare centre infrastructure in a rural village, several hundred lives can be saved. Which investment offers a better return?

And yet, try explaining that to Ananya's father. He has no clue about GDP figures and healthcare budgets. All he knows is that he lost his beautiful little daughter when there was a drug available that could cure her. But it was simply an accident of geography coupled with a cruel accident of genetics that took her away forever.

Wednesday, September 2, 2020

The Secret Recipe to make the Best Idlis ever

 I love Idlis. The best part about this wondrous dish from South India is its simplicity. When I rave about the beauty of an Idli, people who are not as fascinated by it as much as I am wonder what all the fuss is about? But, the craze for Idlis is something that has been passed on to me through my genes. My family is equally crazy about Idlis as I am. Which is why, when my niece, Nidhi says she is not too find of Idlis, it makes me wonder, was there a mistake in the hospital after she was born? I mean, you know, mix-ups, exchanges and so on?

My aunt, Rita makes the finest Idlis. Her Idlis are something else entirely. When she calls us over for Idlis, I am almost tempted to skip a meal or three in anticipation. She probably got the recipe from her mother-in-law, who stayed in Chennai for a better part of her life and was a legendary cook herself. 

When I had quite perfected the art of making a decent sourdough loaf, my attention turned to Idlis. To me, this was the next culinary bastion to be conquered. I started doing my research. I spoke to many people who made good Idlis including of course, my aunt. I scoured the internet for recipes and methods. I even tried reading up about the science of Idlis.

The variation in the proportion of Urad Dal (Split and Skinned Black Gram) to rice was so dramatically different from person to person that I was at a loss as to whom I should follow. I decided to use my aunt, Rita's 1:2.5 proportion. For every cup of Urad Dal, it was 2.5 cups of rice. This was a hugely successful recipe, so why bother experimenting, I thought?

The quality of the ingredients is very important. Only whole Urad Dal is to be used. The rice is also called Idli Rice and is a form of parboiled rice. Both these ingredients are available in most supermarkets. While there seems to be less variation in Urad Dal the Idli Rice is another story altogether. Different shops have different qualities and you will need to try out a few before you finalise which one you will use and stick to it. Unfortunately, experimenting is the only way, here. In Hyderabad, where I stay, Ratnadeep stocks a decent Idli Rice and so does the P Store in my apartment complex.

Wet grinders give the best results for grinding for Idli. While theoretically you could use a regular mixer-grinder, the results are very disappointing.

One more trick which many people use these days is to put 1 tablespoon of soaked methi seeds (fenugreek) in the grinder before grinding the Urad Dal. Yet anther trick is to put a handful of white rice cooked the previous day of grinding into the grinder while grinding the Idli Rice or to grind a handful of poha (puffed, flattened rice), mix it in water quickly and pour the resultant paste into the grinder while grinding the Idli Rice.

The final trick is to NOT mix the fermented batter. This was a big mistake I was doing until I read about it on the internet here. The key is to mix salt after mixing both the ground Urad Dal and Idli Rice and then allowing it to ferment to not necessitate mixing the batter at all after the process. Simply put a spoon and take small portions of the fermented batter from top and put in the Idli Plate that goes into the Idli steamer. Keep taking such portions right down till the end. Never mix. This, honestly, is the game changer. I had tried the entire recipe as explained above for months. I got Idlis that were good but nowhere close to my aunt's. With this step, things went up several notches.

Try to finish off the Idli batter in a couple of days. Every time you keep it in the fridge, the quality of the Idlis will deteriorate a little.

Here's the full recipe:

Ingredients:

1 cup whole urad dal

2.5 cups Idli rice

1 tablespoon methi seeds

1/2 cup poha

Salt to taste

Method:

1. Wash the urad dal couple of times and soak in plenty of water (at least double the quantity). Wash the Idli rice 3-4 times and soak in water. Soak the methi seeds. Soak all this overnight.

2. Start wet grinder and pour the methi along with the water. Grind for 4-5 minutes. Then while the ground methi is in the grinder, start the grinder again. Drain the Urad Dal and put into the grinder slowly. Add small quantities of water (few table spoons every time) to ensure that the batter does not become thin. It should be like a thin paste. Too much water can mess up the Idlis. My experience is about 1 cup of water over the entire process but you should experiment with this to get the quantity right. Grind for about 30 minutes.

3. Remove the ground urad dal and then put the Idli rice into the grinder after starting it. Quickly grind the poha, mix with the water and immediately put it into the grinder. Allowing it to stand will cause the whole thing to become very gelatinous.  Grind for about 6-7 minutes only.

4. Remove the ground Idli rice and mix with the ground urad dal. Add salt to taste.

5. Allow to ferment. 12-24 hours depending on the ambient temperature.

6. Do not mix the fermented batter. Take a wet muslin cloth and place on the idli plate. Scoop out the batter, one by one and put it on the cloth. Steam for 7 minutes.

7. Serve with ghee, various chutneys, karam podi and sambar.



Wednesday, July 29, 2020

Experience is the most important factor in a doctor when you are looking to fix tricky problems

I had been having a nagging pain in my right shoulder whenever it got a little cold. So during winters, the problems would exacerbate. Even during the summers, when the AC would be on, the continuous draught hitting the shoulder would cause it to pain. Typically I would fall asleep in the beginning. Then slowly the pain would start and it would gradually worsen till I could sleep no more. I tried multiple things - a hot pad, a sweater, a shawl draped around tight around my shoulder. Nothing worked. I talked to my nephrologist. He could not solve the problem either. This went on for a couple of years.

I was at a loss as to which specialty did this fall under? Was it an orthopaedic issue? Was it neurological? Or did I need to see a rheumatologist?

We all look for different qualities in our doctors. Some of us go because they are from good universities. Some of us go because they are recommended by others. Some are chosen because they practise at reputed hospitals. Some, because they are non-commercial. Some, because they are very approachable and friendly. Some, because they are highly experienced.

I find that for tricky problems, experience matters a lot.

I had been having numbness in the fingers of my left hand for a long time a few years ago. I was referred to a neurologist by my nephrologist. He was relatively young and approachable and seemed well-read. He ran a whole bunch of tests including some very expensive scans - some of them multiple times without yielding anything. Finally he concluded that I needed a 'sural nerve biopsy'. This sounded very complicated. I told him I would get back to him. I met my nephrologist again who asked me to meet Dr. J. M. K. Murthy at Hyderabad's Care Hospitals. He warned me that while he was very senior and experienced, he did have a short temper. He offered to call and talk to him before I met him.

When he called and told him briefly about my background and symptoms, the doctor seemed pretty confident that it was Carpal Tunnel Syndrome. Just by listening to a couple of lines on the phone.



I decided to meet him. Dr.  J. M. K. Murthy was a very senior doctor. He probably was around 65-70 years old. You had to strain to hear him. I explained my symptoms. He said it looked like Carpal Tunnel Syndrome. He asked for a scan. The scan confirmed the diagnosis. It was amazing that a doctor from the same specialty could not diagnose this despite several tests, a lot of time and a whole lot of money. 

He asked me to see an orthopaedic doctor who would have to do a small surgery to fix the problem. The surgery resolved the problem completely. Ever since then I have had a lot of respect for him for anything neurological.

Coming back to the shoulder pain, I went and met Dr. Murthy despite the dangers of the Coronavirus lurking at every corner. The pain was becoming a major problem. He saw me and heard the symptoms. He made a small change in the medication I was taking. Instead of one type of neurological agent, he put me on another. He told me to come back to him after a couple of weeks.

Almost by magic, the pain vanished in a few days. When I went back to him, he asked to continue that same prescription. What was bothering me for almost two years disappeared so easily.

That is the beauty of experience. While experienced doctors are at times a little temperamental and not as approachable as the younger ones, for problems that are not straightforward, we should consider consulting them. Chances are that we may be pleasantly surprised.

Sunday, June 7, 2020

Why I was thrilled to know I had a fistula infection

I woke up yesterday feeling a little different. It was a slight feverish kind of feeling. I felt a little sore in my throat as well. I had an iced drink a couple of days back and day-before-yesterday, I took my trusted home remedy for a sore throat or cough - Fig tea which is made by boiling 2 pieces of cut dried fig (anjeer) in a glass of water until the water becomes dark brown. I was feeling much better by that evening. Which is why I was surprised that I felt sick yesterday morning.

I started imagining the worst. Did I have COVID? Fever and sore throat are common symptoms. I started thinking about what I should do. My meditation exercise also went horribly as my mind kept playing out the various scenarios. To make things worse, someone forwarded a video of Hyderabad's Gandhi Hospital's COVID ward (an unhygienic mess). My mind kept imagining having to stay in that ward.

After my shower, I checked my temperature. 99.1 degrees Fahrenheit. I started panicking.

After about half an hour though, I noticed that there was a little oozing from my cannulation site. It looked like it was puss. I felt relieved. It was only a fistula infection. It was not COVID!

I was actually happy that I got an infection in my fistula. Look at the irony!

The scare among everyone is so bad these days. The way this pandemic has changed our lives is crazy. The constant reporting of the news on the virus has not helped. People think this is worse than cancer. The contagious nature of the disease has obviously changed the entire perception. I don't blame the people though. The fear of the unknown is often worse than the fear of the known.

I called my vascular surgeon. Thankfully he answered my call. He asked me not to come to the hospital unless it was unavoidable. He asked me to send a pic of the site. After I did that, I was advised to start an antibiotic, apply an antibacterial ointment and change my cannulation site.

The fever has since subsided. I am much better now thankfully.

Wednesday, May 6, 2020

Lockdown Diary

As about two-thirds of the world is under various forms of lockdown and various governments are mulling a safe exit strategy, I have had a very different life for the past month and a half. While work did keep me busy full time, the rest of my time was spent very differently. I did get more exercise than usual and could up my meditation practice as well.

Working from Home

Our company is operating as usual for the most part. With most of our centres running as usual - some more loaded than usual - everyone is on their toes, at least figuratively. We use video conferencing solutions to keep in touch with each other.

My 65-year old mother who freelances for an insurance company gets a huge kick out of saying, "I have a Zoom call at 11:30 today." It makes her feel cool.

People say the way we work is never going to be the same again. While that might be true in the short run, I don't think this is a permanent phenomenon. Once the vaccine is out, even if after eighteen months, everything will be back to normal. Until the next pandemic at least. Especially in India where internet connections are flaky at best, long term working from home is not going to be an option.

Until then we will all enjoy incidents such as this:



Household Chores

One major inconvenience for Indians is having to do the cooking and cleaning in the absence of maids. As the lockdown prohibits people from venturing out of their homes, unless you have a live-in maid, you are left to fend for yourself. Ironically, when news of the impending lifting of some of the restrictions was announced, many television channels carried the news that domestic helps were now going to be allowed, as if this was a matter of national importance. The WhatsApp groups in our residential society had several animated discussions about whether we should allow maids or not.

Our home is fairly egalitarian that way. While my mother does most of the cooking and the dishes (my brother and I chip in regularly), my father operates the washing machine and the vacuum cleaner every alternate day. My mother insists on using the old-fashioned broom on other days followed by a thorough mopping.

I get away with just change my bedsheets and vacuuming my room every day. Having a GFR of 0 does have its advantages.

Zoom calls

Families who rarely bonded and friends who have not met for years are now finally making time for connecting with each other. This is a very good thing. I have had a lot of fun hanging out with my cousins and college friends. Saturday nights is usually when these calls happen. During some of these calls, we play a game online like Pictionary as well. I believe there are special online versions for some games.

The dynamic in these calls is very interesting to watch. While some calls have a lot of activity where everyone is speaking over the other - and this is especially true when there is a game of some kind being played, on other calls there are brief bursts of conversation followed by bouts of uncomfortable silence where everyone is wondering what the hell is happening.

Whatever be the case, re-connecting with family and friends is probably one of the biggest positives to come out of this crisis.

One of the family Zoom calls

Lockdown Cooking

I have been able to spend more time on sourdough since the lockdown began. While I could indulge this hobby only occasionally earlier, these days I have been trying things almost every weekend. I experimented with sourdough pizza last weekend. It turned out really nice though it required quite a lot of effort. I also made ratatouille one day.

Sourdough Pizza

My brother, who happens to be a natural chef, has been delighting us time and again with some really fancy stuff. He whips up an exotic salad with hardly any thought and makes Pav Bhaji and Rajma without any readymade masalas.

To be honest, my parents and I have more than once considered firing our cook.

The world will never be the same again

I got a beautiful video from a cousin that talked about the irony of the situation where the inhabitants of Planet Earth needed a deadly virus to remind themselves that life is meant to be lived very differently from what they had become used to. Check this out:







Tuesday, February 25, 2020

Hepatitis C testing in Dialysis Patients: Making sense of the various options



Hepatitis C is a major problem in dialysis patients. Dialysis patients are at risk of seroconversion (getting infected with the virus) since their blood is being drawn out of the body and is passed through an external system. This risk is further increased when the dialyser is reprocessed.

Regular testing for the presence of the Hepatitis C virus is an important tool to prevent seroconversions in dialysis centres. To be able to control transmission of this virus, all patients of a dialysis centre must adhere to the testing protocols instituted by the centre.

There are multiple ways by which the presence of the Hepatitis C virus can be tested:

1. Liver Enzymes: During the early few days of transmission, the liver enzymes of the patient might be elevated. Liver enzymes include ALanine Transaminase (ALT) and ASpartate Transaminase (AST). These are also called Serum Glutamic Pyruvic Transaminase (SGPT) and Serum Glutamic Oxaloacetic Transaminase (SGOT) respectively. These tests are relatively cheaper than the other tests and so, some centres test this on a monthly basis to try and catch those transmissions that might have occurred during the past few days.

Note that the levels of these enzymes typically return to normal in due course. Also they could be elevated due to other conditions. That is why these tests can never be relied upon completely. They only serve as early indicators that something could be wrong. Further investigations is almost always necessary.

2. Hepatitis C Antibodies: Whenever the body gets infected with the Hepatitis C virus, it instinctively produces antibodies that try to fight and kill the virus. There is a blood test that tests for the presence of these Hepatitis C Antibodies that can also signal that there has been a Hepatitis C infection in the body. Again, this is also an indirect method of testing as this does not actually test for the virus itself. Rather, the test is for something that is produced in response to the virus.

One important thing to note about Hepatitis C Antibodies is that these antibodies take 4-6 weeks after the transmission to reach levels that can actually be detected. Sometimes, these antibodies may successfully eliminate the virus. In this case, no further treatment may actually be necessary. Evidently, this test is also not a completely reliable test to determine if a patient is a carrier of the virus or not.

3. HCV RNA PCR: This test actually tests for the genetic material that constitutes the Hepatitis C virus. This is the only direct test for Hepatitis C among the tests listed here. This actually tests for the virus itself and not any other surrogate. This test is of two types: Qualitative and Quantitative. The Qualitative test will only say if the virus is found or not. A Quantitative test will also tell you how many copies of the virus are present per millilitre of blood. This is the most accurate method among all those listed here.

If at any time, any of the earlier mentioned tests is reported as positive, it is imperative that the confirmation is obtained by testing for HCV RNA PCR. Only a positive HCV RNA PCR test can confirm if the patient is indeed a carrier of the virus. If the preceding two tests are both positive but the HCV RNA PCR is negative, it still means that the patient is negative for the virus.

Frequently Asked Questions:

1. If the HCV RNA PCR test is the only reliable test, why even bother testing the other two?

Cost. The HCV RNA PCR test is significantly more expensive that the ALT/AST or HCV Antibodies tests. That is why these are first tested and only if necessary, the HCV RNA PCR is tested. If cost is not a constraint, then by all means, the HCV RNA PCR should be tested.

2. If someone has a positive HCV Antibodies test, does it mean they are carriers of the virus?

Not necessarily. The following two reasons could also result in a positive HCV Antibodies test for patients not carrying the virus:

Early infection that was fought and eliminated by the body by itself
Patient was successfully treated for Hepatitis C

3. What is the recommended testing schedule for these tests?

Each dialysis centre has different protocols. At NephroPlus centres, the following protocol is followed:

ALT - every month
HCV Antibodies - every 3 months
HCV RNA PCR - if any of the above turn out positive
Further, at entry, both ALT and HCV Antibodies are tested. In some cases, depending on the past history and dialysis centres dialysed in in the past, HCV RNA PCR may be required on a case by case basis.

Hepatitis C Treatment:

A new class of drugs called Direct Acting Agents are now available with excellent success rates in treating Hepatitis C. If you are a carrier of the Hepatitis C virus, please talk to your nephrologist about getting treated with this class of drugs. Several studies have shown that outcomes and longevity of dialysis patients is improved after being successfully treated.

Conclusion:

Hepatitis C is a major problem for dialysis patients. It is primarily transmitted through the blood and dialysis patients, by virtue of having their blood exposed practically every other day in the dialysis centre are at high risk of seroconversion. Regular testing as per dialysis centre protocols is an important weapon in preventing cross infections. Treatment with Direct Acting Agents must be considered for all dialysis patients who have been infected with the Hepatitis C virus.

Thursday, February 13, 2020

Some problems on dialysis may only come after several years



I used to drink a lot of fluid. Even though I dialysed six nights a week, I used to put on anywhere between 3 and 4 kgs between sessions. After my "gap day", I used to be at least 5 kgs above my dry weight. I remember a couple of trips when I missed two nights successively. I had put on about 7 kgs!

I never had any symptoms at that point. I never felt the need to restrict my fluid. I only had mild cramps or hypotension once in a way while on dialysis. This did not bother me enough to mend my ways. I also thought that if I am undergoing so much hassle and undergoing six nights of dialysis every week, what is the point if I still have to restrict my fluid?

I was wrong.

The human body is such a beautifully complex system. It works in such mysterious ways. Scientists have not yet been able to unravel even a small fraction of the hundreds of different processes that happen, all by themselves making use of only natural resources. When you think about how the human body functions without any artificial source of energy, without anybody directing it, you can only feel a massive sense of gratitude for the way all this works and how it all turned out this way.

Over the last year or so, after more than two decades on dialysis - I am close to twenty three years on dialysis - I have started feeling that my heart can no longer withstand large fluid weight gains. What comes as a surprise to me though is that I am unable to withstand even moderate weight gains of 2-3 kgs at times.

I got a bunch of tests to see what else might be causing the slightly heavy breathing that I develop after my non-dialysis nights. No test came out with anything wrong. Doctors say everything is fine and that I should not worry - with good reason - they wouldn't want to alarm me. I reached out to some experienced patients online and they told me that yes, years of excess fluid weight does take a toll on the heart even if it did not cause any symptoms at that time.

I was wondering how that could possibly happen? It was as if the symptoms were stored away in the locker only to be used after some years. How can that happen? If the heart cannot handle large volumes of excess fluid, shouldn't it protest at that very time? Why lead me down the garden path and fool me into thinking that 5 kgs of excess fluid is no big deal? Show me a symptom at that very time, damn it!

Well, what's done is done. Unfortunately I cannot undo this. I always felt the need for a CTRL-Z or a CMD-Z button in life. But that is not to be.

I have seen several posts on the internet forums saying that patients feel ok with twice a week dialysis, then why should they do thrice a week? It is a valid question in the Indian context given the affordability problems we face. I know that several research papers these days are supporting twice weekly dialysis. I am not myself a huge fan of this modality. Most of these research studies have not studied patients over decades when the impact of these decisions begin to rear their hood. They are mostly all short duration studies that have not seen what happens in the long run.

Even cheating on diet could have similar consequences. Your body may not display covertly the impact of a high Potassium or Phosphorus. But from what I have seen, over the years, these things that we've taken for granted can come back to bite us.

So, what we all need to keep in mind is that not having symptoms on dialysis does not mean that all is well. These problems can fester over a long time and then finally show their impact after a few years. So we cannot assume that we are ok doing less than optimal sessions or not following the right diet and the right fluid restrictions. We must realise that we will have to pay the price later in life.

Saturday, January 25, 2020

Moscow Diary

Almost not to be

When I completed my trip to Europe in November 2018, I had mentally decided that I would not do any more international trips. The main reason was that I was simply not used to the regular four-hour sessions (what I call washing machine sessions) and my body protested when I did these sessions. One such session was fine. More than one I could not take. Few international centres do nocturnal. I could still do short trips within India where I could get away by doing one washing machine session and still get a good three days at the destination. Left to me however, I would still prefer just one night away from home when I would not need to do any washing machine sessions.

So when my friends planned a trip to Moscow, I was not really keen on going. It did not help that I had a bad cough and cold (diagnosed as sinusitis) which just wouldn't go no matter what I tried. I told them about the constraints around dialysis and how I could not take more than one washing machine session. They asked me if I got two nocturnal sessions, would I be ok? I said yes. I assumed that it was all a pie in the sky never to be seen through to fruition. Who would do nocturnal for an Indian patient in Moscow?

I had underestimated my friends.

When they walked in to my cabin the evening before the scheduled departure, triumphantly proclaiming that nocturnal had been arranged, I shook my head in disbelief, my heart racing wildly. I would actually be going to Moscow.

Cruise down River Moskva

We landed in Moscow's Sheremetyevo airport at half past seven on a dark and freezing morning. After freshening up, we headed to The Red Square which is the heart of Moscow. The city was still celebrating New Years. Every part of it was lit. We took in the sights with mouths wide open. It was that beautiful. Very aesthetically done, the lighting was not gaudy or loud. It was delicate and pretty.


As we got off the cabs and looked around the Red Square, we saw the elegantly coloured Cathedral of St. Basil, the Kremlin and the majestic ancient buildings that adorn the square. We ambled around the area for a bit and realising that the Kremlin was shut on Thursdays, we headed for River Moskva which meanders through the city and on the banks of which all the main monuments and important buildings of the city have come up. We boarded a cruise ship and enjoyed a leisurely lunch aboard also getting a great view of some very interesting sights the city had to offer.

Lunch on board

A monastery, miracle water and a frozen lake

The next day we took a train to a very ancient monastery founded by a St. Sergius about seven centuries ago. The monastery has several hundred practising monks and some very ancient cathedrals. Coincidentally, the day we were there was one among two days in the year when they give out holy water that is supposed to be miraculous. One of my friends stood in what was a rather long queue to collect some of it which he generously shared with us. Either we were not pious enough or the water not miraculous enough. I am still on dialysis as I write this.

We took cabs to Lake Pleshcheyevo an hour or so from there. The lake was completely frozen. We could literally walk on it. No, this had nothing to do with the miraculous water. The water was frozen and the ice was several centimetres thick which was enough to hold our weights.

On the frozen lake

We headed back to the Red Square the following day. A bunch of us took the Kremlin tour while the rest of us visited St. Basil's Cathedral.

In front of St. Basil's Cathedral

Dialysis in Moscow

I got two nocturnal dialysis sessions at Moscow's Fesfarm Medical Centre. The techs there never did nocturnal. This was done due to a special request from my friends. I was very moved that they agreed to accommodate the request. They even had an English speaking member of the staff stay there overnight in case I needed to communicate to them. They stared wide-eyed at me when I cannulated myself. They had never seen anyone do that before. The actual sessions went off without any problems.

I was glad that I could get these sessions. The reason I feel comfortable on nocturnal while on a holiday is that there is no feeling of being drained or being washed out after a session. The night time dialysis leaves the days completely free to enjoy the place. It also affords me the freedom to eat and drink whatever I want. These are such important aspects of enjoying a holiday.

Food

One major concern the three vegetarians among us had while planning the trip was the availability of vegetarian food. Thankfully we did not have any problem. Though there were very few options in almost all the restaurants we visited, whatever was there was satiating and delicious. The ingredients used were top notch. The vegetables were all freshly picked. The sourdough bread was excellent.

Move over Raj Kapoor, Mithun Chakraborty is here!

On one drive by cab, the driver asked us if we were from India? We asked him how he knew? He said he was a fan of Bollywood and loves Mithun Chakraborty. One of my friends sang, "Jimmy Jimmy" from the film, "Disco Dancer". As if on cue, the cab driver responded, "Aaja Aaja". We were all shocked. How in the world did a Russian driver know that song?

The guy turned out to be a huge Bollywood fan and belted out some other Bollywood numbers, some of which even we had not heard.

I guess "Awara hoon" can now safely be replaced by "Jimmy Jimmy" in the Russian scheme of things.

Here are some other pictures from the trip: