Saturday, March 23, 2019

Book Review: Prevention and Treatment of Chronic Kidney Disease and Kidney Failure

Being diagnosed with Kidney Disease can be quite a traumatic experience; being put on dialysis even more so. Many of us are not even aware of what kidneys do. Then suddenly, our lives are turned upside down. All our plans are shattered and we have to deal with something so unexpected, so horrific that we are unable to come to terms with what has hit us.

In times like these, we all wish we could learn more about this disease. For most of us, this is going to be a lifelong journey. A journey that we wish we could have avoided. Now that we are firmly on it, we could do with some help.

This is where a book like this by Dr. Prashant Dheerendra comes in handy. Devoid of all the technical jargon that is beyond the understanding of those newly diagnosed with Kidney Disease, this book explains the basics in a language that you and I can understand with ease.

The writing style is not lengthy prose but concise bullet points. This style allows us to easily digest what we need without getting overwhelmed. 

Dr. Dheerendra, the author is a reputed nephrologist in Bangalore and has very kindly made the book available as a free download. You can get the book by clicking on this link. Hope you find it useful.

Thursday, March 21, 2019

Diet Restrictions on Dialysis: It’s all about finding a workaround

(Disclaimer: Never make any changes to your diet without talks to your doctor or dietician. The advice given here is general that may or may not apply to you.)

Most people on dialysis feel that the diet and fluid restrictions are the most frustrating part of dialysis apart from the dialysis session itself. These restrictions are so onerous that we get frustrated with the limited options we seem to have. We end up craving all the foods we cannot have. We stare longingly at someone gulping down something as simple as water.

However, the good news is that it needn’t be so difficult. The trouble is that we don’t think out of the box. Some Doctors and Dieticians also put such a negative focus on these restrictions that we tend to get scared and worry of the consequences of even a small slip up. The truth is that there is almost nothing that we cannot eat or drink by incorporating a simple workaround in our daily life provided we are getting good quality dialysis as per the doctor’s recommendation. So if we’ve been prescribed thrice weekly, four hour sessions and we stick to it, we can practically eat anything we want by  thinking creatively and figuring out ways to adjust our meals so that we still do not cause any problems to our body.

Here are some simple hacks to enjoy your favourite foods:

  • Fruits: Many dialysis patients are given a blanket restriction of “No Fruits”. This is not needed at all. If we are getting thrice weekly, four hour sessions and our Potassium levels are within the normal limit, there are ways to include a small amount of fruit in our daily routine. There are several low Potassium fruits that can be safely included. The important thing is to be aware of the Potassium content of the fruit we want to eat and ensure that the size of the portion we eat gives us a safe amount of Potassium. One hack that is used successfully is to have some fruit in the first half hour of dialysis. This allows the Potassium that gets absorbed by the body to be cleared out during that session itself. This can only be done if we have adhered to our diet plan during non-dialysis days.

  • Phosphorus: This is less of a problem for Indian patients. It is more of a problem than Potassium in countries where meat is an important part of meals. However, the best part about Phosphorus is that we have Phosphorus binders that remove the Phosphorus from our intestine and excrete it as part of the stools so that it does not remain in the blood and cause any problems. So, if we want to enjoy a certain high Phosphorus food, we must ensure that we take the prescribed Phosphorus binders along with the meal it is a part of.

  • Protein: There are several misconceptions about protein intake on dialysis. Some people believe that we need to restrict our protein intake when we are on dialysis. This is probably a hangover of our pre-ESKD days. When the kidneys are functioning sub-optimally and we are still not on dialysis, our protein needs to be restricted. However, when we get onto dialysis, we actually need a lot of protein. Since the kidneys are not functioning at all, there is no more harm that the protein intake can do. In fact, our body needs all the protein it can get as dialysis sessions themselves remove a lot of protein. Most dialysis patients don’t get enough protein. The recommended intake is close to 1g per kg body weight per day. For Peritoneal Dialysis, it is even higher. Most Indian dialysis patients don’t even reach close to that value and end up staying malnourished forever. This adversely affects their quality of life and longevity. So, we must try to have good quality protein in our diet and we don’t need to worry about getting more protein than we need. 

  • Fluid: Fluid restrictions are the most onerous part about being on dialysis for many. Most people are restricted to one liter a day. The fluid restriction imposed includes all fluid - not only water. It includes tea, coffee, the water in your dal, the water in the rice (a huge amount of rice is water), fruits (some fruits are almost 90% water), curd, ice-cream (anything that is fluid at room temperature is counted as fluid). So, how do we workaround fluid restrictions? There’s always a way. Say you are craving a Coke. Most of the time, a simple 100 ml of the fluid is enough for us to satisfy that craving. So, all we need to do is to restrict the amount of other fluids like water / tea / coffee we’re used to having and replace that with the Coke. Coke is high in Phosphorus so we must make sure our binders are at hand. Honestly, 100 ml of Coke is not going to kill us provided we’ve stuck to the recommended diet plan the rest of the day.
I strongly believe that the depression resulting from craving a certain food or drink will kill us faster than simply going ahead and having the food or drink. However, we need to get creative on how we incorporate it in our day. Adjust something here. Forego something else there. It’s all about finding a workaround. 

Doctors and Dieticians have a huge role to play in this. Some doctors simply issue blanket instructions without keeping in mind the ramifications. The discussion is centred more around what we cannot have rather than on how to have what we want to have. Doctors and Dieticians need to orient their discussion about diet and fluid restrictions around positivity. Talk about how to find ways to eat and drink what patients want. If someone wants to have a slice of mango in summer, don’t tell them “No way in hell”. Tell them how to do it. All we need is one slice. Or two. It is possible. Tell us how we can do it.

This is true of every aspect of dealing with dialysis. We can do anything we want despite being on dialysis. There is always a way. It’s all about making the effort to find it. We can sit on our bed the whole day and be depressed that we can’t do this or that. Instead, we must get up and figure out ways to do it. 

The same thing applies to food. We can cry the whole day that we are not able to eat or drink something. If we are craving it badly, we should talk to our Doctor or Dietician. We must be willing to adjust. We must be willing to compromise on something else. There will always be a way to enable us to enjoy the foods we want. It’s all about making the effort.

You can download a copy of this post here.

Sunday, March 10, 2019

How miscommunication has changed the world

We’ve all played the game “Telephone” when we were young. Some call it Chinese Whispers. The game involves participants standing or sitting in a circle and a message being whispered by someone into the first player’s ears. They have to then whisper the same message into the next person’s ears and so on until the message reaches the end of the circle. Most likely, the message is completely distorted by the time it reaches the end. Take a look at this video to see some hilarious results when the same game is played but this time with an action rather than a verbal message.

There are several similarities in the real world when much more important messages get transmitted between people. The longer the chain, the more distorted the message becomes. In the above video, the distortions that come in are due to one of the following reasons:

- A player misunderstood the message
- A player intentionally transmitted a wrong message

Now take an event in the real world. In the age of social media and the culture of tweeting and retweeting, the message that gets transmitted, often in seconds, can cause the event to be distorted beyond recognition much like the distortion seen in the video above. The distortions again could be due to genuine misunderstanding or crooked intentions. 

In a politically charged atmosphere like we are witnessing these days, this can have enormous ramifications.

One aspect of human nature causes this distortion of messages to happen more rapidly - the propensity and desire to believe something dramatic without subjecting it to rational analysis.

When we extend this entire analogy further, we can also understand some other things.

Several centuries ago, when there was no internet and Twitter or Facebook, communication happened much more slowly. However, human beings were still the same. So while these distortions happened, they happened at a much less rapid pace. The level of distortion that happens today with a tweet and several hundred retweets in a matter of a few minutes, took a few decades. Nevertheless, distortions happened and the effects were no less significant. It’s just that since they took so much time, not many people took notice. By the time some people realised what had happened, the distortions became widely believed to be the truth.

Look at religion. Several things about religions probably got distorted because of this reason. The religious thinkers that founded several of the widely followed religions started getting elevated to supernatural beings with magical powers. Seemingly normal events started acquiring divine undertones. It is all most likely to be the effects of the equivalent of a million ‘retweets’, slowly over time!

So before retweeting or even indulging in good old communication, we must make sure we are not distorting the message - by mistake or intentionally. The consequences can be beyond what we can ever imagine.

Saturday, March 9, 2019

Use online support groups for your disease wisely - Facebook cannot replace your doctor

Anyone diagnosed with a chronic condition, whether kidney disease or something else, inevitably has problems, minor and major from time to time. All we want during times like these is to get rid of the problem as soon as possible. 

In today’s world where social media usage is increasing rapidly, it is only expected that we turn to networks like Facebook for help in dealing with a chronic disease. Most diseases have one or more Facebook groups or pages where patients flock to get both emotional support and answers to perplexing questions. In the age of instant gratification, this method of getting answers is much easier compared to the hassle of getting an appointment with a doctor, trudging to the clinic or hospital and then waiting there for your turn and then finally getting some advice. If you’re prescribed some additional investigations or referred to another specialist, then the wait for answers and a solution becomes even longer.

However, we must all understand the gross limitations of ‘social media consults’. Facebook and other more traditional support groups rarely have doctors  active on them waiting for questions to be posed and who will jump in to answer. Most likely, it is fellow patients who are as unqualified as we are in medicine who will respond the fastest. Their intentions would be the best, no doubt. However, their expertise is limited to their own experience. Some of them may have been dealing with a condition similar to ours for longer. But every individual is different and advice given out on such support groups must never be taken as a substitute for medical advice.

There are things however where such groups are immensely useful. One example is to hear from patients about how they dealt with a certain problem. Another possible instance is to get the take of different patients on which modality among a set of modalities they prefer and what they like or dislike about a modality. 

In the kidney disease context, I can think of the choice between a Kidney Transplant, Comprehensive Conservative Care, Peritoneal Dialysis and Hemodialysis to be one possible aspect where support groups can be useful. Many patients have heard only of the first snd last from their doctors! While no one on such a group can be qualified to answer which modality is the best for a particular individual, it would be enlightening for someone recently diagnosed with Kidney Disease and progressing to kidney failure to get thoughts about each of the modalities from people who have actually experienced them. Some may have experienced more than one. Their experience would likely be that much more useful.

Another aspect where patients could benefit from such groups is to get support in troubled times. While personally, a red heart or “hugs and kisses”, “sending prayers your way” does not do much for me, I know there are people who really benefit from such messages. If nothing else, it serves to remind them that they are not alone. There are several other people with similar problems.

Here’s a list of things you can use social media and online support groups for:

- Get anwers to general questions about your condition
- Get opinions about pros and cons of a particular treatment and therapy
- Get details of experiences of a particular treatment (‘what side effects did you experience when you took this?’)
- Ask for how long something took to settle (‘how long did your AV Fistula take to mature?’)
- Ask about how a particular episode panned out (‘how did the exit site infection of your PD catheter go?)

Even in the above list, never, ever change your treatment without discussing with a doctor. Remember, every individual is different. What works for one person may not work for another. Use advice received on such groups merely as a lay person’s opinion. This can never be a substitute for medical advice.

Here’s a list of things you should not use social media and online support groups for:

- Ask for answers about a condition very specific to you (‘My pet ant has a pimple on the dimple of her left cheek. What can I do?’)
- Ask if you can take a particular medicine, if you can stop it or if you should change the dosage 
- Ask specific questions about your diet. Especially in kidney disease, diet is highly dependent on your lab values and what works for one may not work for another 

Remember, social media and online support groups are an excellent source of support. They should however, never be treated as a substitute for medical advice. People who are answering questions on such groups must also refrain from giving advice that can be construed as a substitute for medical advice. People diagnosed recently might not be aware of some basic aspects of the disease. They may not even be aware of the risks of following everything one reads online. In such circumstances, it would do everyone a lot of good to use social media and online support groups as sources of support and general information only.