tag:blogger.com,1999:blog-41557706133552021512024-03-18T13:13:36.574+05:30Kamal Shah's BlogOn Dialysis in India for 26+ years, Daily Nocturnal Home Hemodialysis, Atypical HUS, Co-Founder of NephroPlus, India’s largest Dialysis Provider, Published Author, TEDx SpeakerKamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.comBlogger1285125tag:blogger.com,1999:blog-4155770613355202151.post-71442909499574608232024-03-03T18:42:00.003+05:302024-03-03T18:42:56.737+05:30The mind is the key to a long, happy life on dialysis<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1rItwgWNucwGgVHbCXMUNuq5AqBXLeZi7TDs4iOZN5Ve0NbpDCiRib4eU7MJWZh7u05WIjFGUb2YbdxxWl9Y6G0BQiDkQ7RjP0YwsN4-d9lma7ZrfqyaGoJQksrNBJbpPWyyn5Z7LjPRJTGuqu7feBEFxuZ5jOQdoVWbALxFQC9ZO1lQ3IN3az527iJA/s847/2610562-untitled-design-25%20copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="799" data-original-width="847" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1rItwgWNucwGgVHbCXMUNuq5AqBXLeZi7TDs4iOZN5Ve0NbpDCiRib4eU7MJWZh7u05WIjFGUb2YbdxxWl9Y6G0BQiDkQ7RjP0YwsN4-d9lma7ZrfqyaGoJQksrNBJbpPWyyn5Z7LjPRJTGuqu7feBEFxuZ5jOQdoVWbALxFQC9ZO1lQ3IN3az527iJA/s320/2610562-untitled-design-25%20copy.jpg" width="320" /></a></div><div><br /></div><div><br /></div>I have seen and interacted with many dialysis patients. Most patients who are positive about their life and are generally cheerful survive long on dialysis. While I do not have any data to substantiate this, I believe this is true. Mostly. It seems intuitive as well.<div><br /></div><div>To some people, this comes naturally. They continue to remain cheerful without making any effort. They don't treat any problem in their life with too much respect. They just move on.<br /><div><br /></div><div>Now, the trouble is not all of us are built that way. Being cheerful in the face of adversity is something only some people are born with. The rest of us have to rely on other tools to build this skill. Remember, even if we can't be cheerful, being stoic about it helps. Though, that is also something many people struggle with. Being upset and feeling depressed comes easily.</div><div><br /></div><div>How can those in the second category cultivate the ability to try and remain joyous in trying circumstances? How can we remain equanimous in the face of a chronic condition like kidney failure?</div><div><br /></div><div>There are a few things that have worked for me.</div><div><br /></div><div>Spend time understanding the disease and the treatment options. Read up about it as much as you can. You need to keep abreast of the latest in this field. Not being a doctor or even in the medical field cannot be an excuse. All it takes is a little common sense. Knowing about your disease and the various treatments available will make you feel much more in control over your health. That way, you can have an informed discussion with your doctor and <b>together</b> arrive at the best option to treat you.</div><div><br /></div><div>Keep busy. Don't let the mind go into the negative spiral of depression. If you keep the mind idle, it will keep going back to the notorious thought chain of "Why me?". Keep your mind occupied. If you are able to work full time, work full time. If not, try to work at least part time. If not this, do something at home to keep you busy. Pursue an old hobby, take up a new hobby, cook, clean, whatever. Just stay busy. Have something to look forward in your day. Don't spend your day lying in bed the whole day or worse, watching television the whole day or the worst, doom scroll the whole day.</div><div><br /></div><div>Physical exercise is known to make us feel mentally better as well. Exercising releases endorphins in our body which bring about feelings of cheer and positivity. And obviously, your body benefits as well. Try to incorporate some form of exercise into your daily routine keeping in mind your other health conditions. Always talk to your doctor about what forms of exercises you can start doing. Walking is mostly safe for all. Start small. Increase slowly. </div><div><br /></div><div><a href="https://www.kamaldshah.com/2018/06/the-importance-of-strength-training-on.html" target="_blank">Strength training</a> is also a very important for dialysis patients because we tend to lose muscle and our bones also weaken over the years. Strength training will help you to regain the ability to walk at a good pace, to be able to climb a flight of stairs, to get up from a chair without much effort etc.</div><div><br /></div><div>Practise mindfulness. Find a quiet place. Sit with your eyes closed. Take a few deep breaths to still your mind. And then focus on your breath. Your mind will invariably get distracted. Don't get irritated or frustrated. Just bring it gently back to the breath. Start with two minutes every day and slowly increase to ten minutes twice a day. This will give you insights into your own mind like never before. You will uncover 'the real you'. </div><div><br /></div><div>Any chronic condition like kidney failure has an undeniable psychological aspect to it. Thankfully, most of it is addressable. You only need to have the willingness and make a heartfelt effort to fix it.<br /><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div></div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com3tag:blogger.com,1999:blog-4155770613355202151.post-34561681062710307172024-02-03T22:27:00.004+05:302024-02-03T22:27:36.899+05:30On the Bharat Ratna<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZV8lLvYLYgPX9nB3EWiuW2h6e0nYPqYsiYCOSYJKBb9f-AYNUvSYKMyDsw0U-mKxfFAX2aRjDXcxXzTmZYTOzjnON56KtHqVf5Qv6REWpNtxcNLAclHoyhlk9J9ecfrGhzWicj99s5hSThYLgMcV27-H_-FQv8Pq8BsD2S2FHGjoPX2mi9IT8q1Fyrw/s800/Bharat_Ratna.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="800" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZV8lLvYLYgPX9nB3EWiuW2h6e0nYPqYsiYCOSYJKBb9f-AYNUvSYKMyDsw0U-mKxfFAX2aRjDXcxXzTmZYTOzjnON56KtHqVf5Qv6REWpNtxcNLAclHoyhlk9J9ecfrGhzWicj99s5hSThYLgMcV27-H_-FQv8Pq8BsD2S2FHGjoPX2mi9IT8q1Fyrw/s320/Bharat_Ratna.jpg" width="320" /></a></div><br /><div><br /></div><div>"Whatever for?" was my first reaction when I heard L K Advani was conferred with a Bharat Ratna. I am also still wondering for what Rajiv Gandhi was given the award? Most of the civilian awards given out these days are merely a gift given to people who are considered close to the establishment, have done favours to those in power or if nothing else, some kind of political statement.</div><div><br /></div><div>The Congress which has been in power for most of the time since Independence is obviously the party most at guilt in making these awards a way to dole out gifts to their near and dear. The first family of the party has this nauseating sense of entitlement where they believe the party and the government is their private property and any favours done to the family deserve such paybacks.</div><div><br /></div><div>Not to be outdone, the current dispensation simply follows suit. Any favours done to those in power or in Advani's case, those who need to be shown to be respected (different from those who are respected) are given these awards. Though, to give credit where it is due, they did open up the nomination process so the citizens can also nominate people for some of these awards. While, the selection process is still opaque, at least some people who are truly deserving have been found suitable to be included in the lists each year.</div><div><br /></div><div>Trouble is whatever the Congress has done, the BJP wants to do better (or worse!). They named every airport, crossroad, road and building after their Parivar. We will name these after our Sangh Parivar. They gave awards to their near and dear. We will give to ours. They had their dictator. We have ours. This is not the BJP that many people favoured in 2014. What they had hoped for was a government with a difference. What they got was more of the same. </div><div><br /></div><div>While obviously both had some things going well for them. The Congress may have done a better job with the economy. The BJP probably does nationalism and foreign relations better. The Congress PMs did press conferences which our current PM never does. Some Congress PMs were considered very weak and deferential to the first family. The BJP PMs could never be accused of that.</div><div><br /></div><div>Civilian awards, though, should be completely apolitical. Have a neutral jury which evaluates nominations purely on merit and then decides. Let these awards not become yet another tool used by wily politicians in furthering their narrow, selfish political agendas.</div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com1tag:blogger.com,1999:blog-4155770613355202151.post-8786119968150571392023-12-31T10:31:00.000+05:302023-12-31T10:31:17.160+05:30My Home Hemodialysis in Numbers - 2023<p>Here's my Home Hemodialysis summary for 2023. If you recall, I have been doing this for the last two years now. You can find earlier summaries here: <a href="https://www.kamaldshah.com/2021/12/my-home-hemodialysis-in-numbers-2021.html" target="_blank">2021</a> and <a href="https://www.kamaldshah.com/2022/12/my-home-hemodialysis-in-numbers-2022.html" target="_blank">2022</a></p><p>This was the first full year of <a href="https://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">Daily Nocturnal Home Hemodiafiltration (HDF)</a>. Of the 249 sessions, I did four nocturnal sessions in <a href="http://www.nephroplus.com" target="_blank">NephroPlus's</a> Udaipur and Goa centres (two each). I have included these sessions in the numbers below. I also did a few short sessions in other NephroPlus centres. These are not included in the summary below. </p><p>I am really grateful to be able to do slow, gentle, nocturnal sessions. I am very clear in my mind. This is the only reason I am alive today. Given the extent to which I disregard limits on fluid and diet, I would have packed my bags long ago. It is this modality that keeps me going. </p><p>This year was special compared to the last few years. I launched my book, <a href="https://www.kamaldshah.com/2023/05/announcing-silver-lining-my-first-book.html" target="_blank">Silver Lining - The Story of NephroPlus.</a> This truly was a turning point in my life. The fact that I had many luminaries from various fields not only endorse the book but also attend the launch, was an honour. The book launch brought about several speaking engagements - a <a href="https://www.kamaldshah.com/2023/09/i-spoke-at-tedx-hyderabad.html" target="_blank">TEDx talk</a> (video of the talk <a href="https://www.kamaldshah.com/2023/11/video-of-my-tedx-talk.html" target="_blank">here</a>), the <a href="https://www.kamaldshah.com/2023/10/mumbai-mehdi-hassan-echo-chambers.html" target="_blank">Mumbai Lit Fest</a>, the Keynote address at one event in my school's (The Hyderabad Public School, Begumpet) centenary celebrations and so on.</p><p>So, without further ado, here is how 2023 went by from my Home Hemodialysis perspective:</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Number of sessions:</b> 249 (241 HDF, 8 HD)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average duration: </b>7.54 hours </p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average Weight Gain:</b> 3.27 kgs (Range 1.25 - 5.7 Kg)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Median Weight Gain:</b> 2.85 kgs</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average UF: </b>3.28 l (Range 1 - 4.2 l)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Median UF: </b>3.5 l</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average Pre-HD BP:</b> 107/68 mm Hg (Range 89/53 - 124/82)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average Post-HD BP:</b> 102/70 mm Hg (Range 80/54 - 122/90)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average RO TDS: </b>0.8 (Range 0 - 11) </p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Average Raw Water TDS: </b>242<b> </b>(Range 25 - 372)</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><b>Complications: </b></p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><span> </span>Cramps: 11 times</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><span> </span>Dizziness: 1 time</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><span> </span>Venous site ooze: 1 time</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;">I am quite distressed by the poor prevalence of Daily, Nocturnal Hemodialysis / HDF in India and even the world over. Even the so-called developed countries have such low numbers of people getting more frequent, longer duration dialysis sessions. I read a book recently about the dialysis system in the US and realised that when dialysis was introduced, it was all done at home for longer duration. It is really sad how that optimum dialysis has now given way to 'bazooka' dialysis which is not at all good for patients.</p><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;">Anyway, here's wishing you, dear reader, a happy, healthy and blissful 2024!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAep7ZLVb3hNnJ3TlAd8I5xlpr1k34YduLCoqV1M0mXEigx4mLC5PxTxU8OJobl0aV0NWa_25A6W14rdaQ1N8YocZ5R6T2lbN8iQcWXaGwGWxiXY-msUz4pWUKb2AdplaxmA6rjv4dK5GFCqgktSqiTmfMYQpNANSy4YAwE8tR_3114zXvbkrc-ybI1C0/s1200/2024-sunrise-1200x675-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="675" data-original-width="1200" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAep7ZLVb3hNnJ3TlAd8I5xlpr1k34YduLCoqV1M0mXEigx4mLC5PxTxU8OJobl0aV0NWa_25A6W14rdaQ1N8YocZ5R6T2lbN8iQcWXaGwGWxiXY-msUz4pWUKb2AdplaxmA6rjv4dK5GFCqgktSqiTmfMYQpNANSy4YAwE8tR_3114zXvbkrc-ybI1C0/w400-h225/2024-sunrise-1200x675-1.jpg" width="400" /></a></div><br /><p style="background-color: white; font-family: Merriweather, Georgia, serif; font-size: 16px;"><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com5tag:blogger.com,1999:blog-4155770613355202151.post-49335778982008512702023-11-27T17:23:00.004+05:302023-11-27T17:24:34.812+05:30It's the sugar, stupid!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGUxYCAqJMzgzZr5NgdtKP_D8ogD25oLVikC3rptQJ3BGxsDH5WGi_uaKVO0cI5Els6-Hj4V2RuiG6x8ky7yG3GLb1DwbrMFcIoOoY7tT_CFFCbIKFIV5qHLYT3gRFiOr81p3W112TcnCWxNTu3QIPq_xVjTvkhboAs9CLzY04p2xdFsypyAdmDxHYcvo/s700/sugar-shutterstock_615908132.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="438" data-original-width="700" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGUxYCAqJMzgzZr5NgdtKP_D8ogD25oLVikC3rptQJ3BGxsDH5WGi_uaKVO0cI5Els6-Hj4V2RuiG6x8ky7yG3GLb1DwbrMFcIoOoY7tT_CFFCbIKFIV5qHLYT3gRFiOr81p3W112TcnCWxNTu3QIPq_xVjTvkhboAs9CLzY04p2xdFsypyAdmDxHYcvo/s320/sugar-shutterstock_615908132.jpeg" width="320" /></a></div><p>One of my friends recently told about <a href="https://en.wikipedia.org/wiki/David_A._Sinclair" target="_blank">David Sinclair</a> and <a href="https://www.lifespanpodcast.com" target="_blank">his podcast about reversing ageing</a>. This guy had lost a lot of weight recently and he told me he was following Sinclair's podcast called Lifespan and following a lot of the advice given in it. Intrigued, I heard a few episodes of the podcast. </p><p>One thing that Sinclair advises is to cut out sugar completely from the diet. He also mentioned he was big on <a href="https://www.webmd.com/food-recipes/what-is-stevia" target="_blank">Stevia</a>. Well, nothing radically new there. <a href="https://www.webmd.com/diabetes/features/how-sugar-affects-your-body" target="_blank">We all know sugar is bad for us</a>. However, the thing around Stevia was something that caught my attention. If there was a way I could continue to have my ridiculous and completely unjustified three large cups of tea/coffee every day with some sweetener (having tried and failed to have them without sugar - relapsed after 20 days), that would be something I was willing to seriously consider. I was having 4.5 teaspoons of sugar in just my beverages every day!</p><p>I also recently heard or read somewhere that until about two centuries back, there was no sugar used by humans. Imagine that! For most of humanity's existence, we managed without sugar and now we are so hooked that we can hardly manage without it.</p><p>I read up on artificial sweeteners. WHO recently put out an <a href="https://www.who.int/news/item/15-05-2023-who-advises-not-to-use-non-sugar-sweeteners-for-weight-control-in-newly-released-guideline#:~:text=©-,WHO%20advises%20not%20to%20use%20non%2Dsugar%20sweeteners%20for,control%20in%20newly%20released%20guideline&text=The%20World%20Health%20Organization%20(WHO,of%20noncommunicable%20diseases%20(NCDs)." target="_blank">advisory</a> saying people should stay away from artificial sweeteners for weight loss. They suggested having tea, coffee and other drinks without any sweetener. Many people talked about a weird aftertaste in most artificial sweetener. I thought I would switch from sugar to Stevia first and then wean myself off that as well. I ordered Stevia from Amazon and one day made the switch to Stevia from sugar. </p><p>There was a weird aftertaste. Sure. But it wasn't bad enough to go back to sugar given all the negative effects of sugar. A few days into the trial though, the aftertaste and the WHO advisory started bothering me. I started to have my morning coffee and later cups of tea without Stevia as well. I did not find it too bad. </p><p>A few days later though, I started dreading my coffee and tea time! I started skipping my tea first and then my coffee as well. For the last few days, I am almost fully off tea and coffee and I don't miss it.</p><p>An unintended good side effect of this has been my dramatically reduced fluid intake between two dialysis sessions. Which is a very good thing! I have been notoriously non-compliant with fluid between treatments. With this, though, I have been having to pull off much less than usual during my sessions. Last night, I had to do only 1.1 litres which is probably a life-time record for me.</p><p>I now feel I could reach a balance where I have one cup in the morning with a little sugar, which would be much less than the 4.5 teaspoons earlier, and still keep the fluid weight gain good (while that was never the original intent).</p><p>One more good side effect of this experimentation is that I have generally started watching out for other sources of sugar and other unhealthy foods. One video that caught my attention was this one from the <a href="https://www.youtube.com/@Foodpharmer" target="_blank">Foodpharmer</a>. A can of Pepsi has 8 teaspoons of sugar!</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/NxHOhz-naf0" width="320" youtube-src-id="NxHOhz-naf0"></iframe></div><p>This morning, I came across a tweet on X which made so much sense:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivj0MuNFnq7wq6bMRFNzKAKzQzxaLl2UfGxnemfACnsRMrAsfW_nlDzoXO67cGwZu6IvJcEvENHMsILq0dZ-qZPon31X3vzgXxWbvE2f0-Yf9Zlprqd-3oJFApCIQf3PZ8L6VpM-nrVD9GjvtOE5XTAwuP-OxAEbr93v1_nBzScGgAzfFDXOpSLZOq8oY/s941/Screenshot%202023-11-25%20at%202.26.43%20PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="941" data-original-width="801" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivj0MuNFnq7wq6bMRFNzKAKzQzxaLl2UfGxnemfACnsRMrAsfW_nlDzoXO67cGwZu6IvJcEvENHMsILq0dZ-qZPon31X3vzgXxWbvE2f0-Yf9Zlprqd-3oJFApCIQf3PZ8L6VpM-nrVD9GjvtOE5XTAwuP-OxAEbr93v1_nBzScGgAzfFDXOpSLZOq8oY/s320/Screenshot%202023-11-25%20at%202.26.43%20PM.png" width="272" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Is it really tea/coffee we like or the sugar?</div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com2tag:blogger.com,1999:blog-4155770613355202151.post-67515029208409195352023-11-25T14:21:00.002+05:302023-11-25T14:21:38.698+05:30Video of my TEDx Talk<p><a href="https://www.kamaldshah.com/2023/09/i-spoke-at-tedx-hyderabad.html" target="_blank">I spoke at the TEDx Hyderabad event</a> on September 17. Here is a video of the talk. Hope you like it.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="364" src="https://www.youtube.com/embed/1mwsTsAq-Mg" width="438" youtube-src-id="1mwsTsAq-Mg"></iframe></div><p><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com0tag:blogger.com,1999:blog-4155770613355202151.post-16241835224603611642023-10-30T16:53:00.003+05:302023-10-30T16:53:44.689+05:30Mumbai, Mehdi Hassan, Echo Chambers<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtNiqkiKUSOgS0QN34czvMzkT7qArS9AP0i1adbfPn0BuB1RRngwZVHKdGWigBuc2Sz5vXNAdrMoBhGRzDPkY5l10n_N9kTUnvUlcQUIyQrQImFy6WDkUJh29EHtLz9SBGJaOuzannlMN4A53Y23uPJ8K-ZS-2wGFEMfe6cJbYv1gxYutgD_MrsY6WuIM/s4032/IMG_3285.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtNiqkiKUSOgS0QN34czvMzkT7qArS9AP0i1adbfPn0BuB1RRngwZVHKdGWigBuc2Sz5vXNAdrMoBhGRzDPkY5l10n_N9kTUnvUlcQUIyQrQImFy6WDkUJh29EHtLz9SBGJaOuzannlMN4A53Y23uPJ8K-ZS-2wGFEMfe6cJbYv1gxYutgD_MrsY6WuIM/w300-h400/IMG_3285.jpeg" width="300" /></a></div><br /><div>I was in Mumbai this weekend for the Mumbai Lit Fest, also called Tata Lit Live, the annual literature festival conducted in Mumbai, sponsored by the Tatas. I had two engagements. On Saturday, after finishing my first event at NMIMS, Vile Parle, the management school, I drove to Nariman Point and checked into the hotel. </div><div><br /></div><div>As I wondered what I would do that evening before dinner, which was being hosted by a friend of the festival, I browsed through the website of the Lit Fest and saw two things that interested me. One was a performance based on the works of P G Wodehouse and the other was a conversation between Rajdeep Sardesai, the TV News anchor and Mehdi Hassan, a journalist from the US. I decided to attend both these events.</div><div><br /></div><div>As I went through Twitter while relaxing on the couch, I suddenly saw Mehdi Hassan trending. I was surprised and took a closer look. I saw several tweets with a video, of very poor quality with subtitles. It was supposedly a video of Mehdi Hassan saying some nasty things about non-Muslims. There were also some tweets, characteristically, with very similar text, saying that in 2002, Ajmal Kasab came to Mumbai and attacked the Tata's Taj Hotel and in 2023, the Tatas invited Mehdi Hassan to speak at their Lit Fest. There were some suggestions to ask the Bajrang Dal to hold a protest at the Lit Fest!</div><div><br /></div><div>Honestly, I had no idea who Mehdi Hassan was. I assumed from the tweets that he was a journalist who originated from Pakistani and might have moved to the US.</div><div><br /></div><div>I went for the event soon after and settled in my chair. Over the course of the next hour, I saw how social media, especially Twitter, has polluted our minds and polarised people like never before. I learnt that Mehdi Hassan was an Indian, from my city of Hyderabad, that he was a proud Indian and that he thought Hinduism is one of the world's greatest and most peaceful religions.</div><div><br /></div><div>To be clear, he did not deny that he said those nasty things about non-Muslims. But that was more than 20 years ago! And he has agreed multiple times in the past that he was wrong. People change. People make mistakes. If he regrets what he said, I honestly, will not grudge what he said. Heck, I have said many things several years back which I don't agree with today. </div><div><br /></div><div>Trouble is social media is such a terrible medium that people jump to conclusions and don't bother to verify facts. Retweeting something is so easy that you do it without as much as a second thought.</div><div><br /></div><div>And this is obviously not a problem only with people who were criticising Hassan today. The same thing happens with everyone. The Congress, the BJP, Hindutva sympathisers, Modi haters, Right wing, Left wing, everyone. No one is spared. And everyone becomes the victim.</div><div><br /></div><div>The conversation touched upon several of these subjects and while I am no fan of Rajdeep and don't even know Hassan, what took place was a very sane, balanced and objective discussion on how we have all become part of echo chambers where the only voices we hear are those similar to our own, where there is no scope for a divergent viewpoint to be heard and anyone who dares to express such a viewpoint is instantly castigated as having an agenda.</div><div><br /></div><div>I like to believe that there are no 'good' or 'bad' people. I just believe people do good and bad things. Every one of us does a bit of both. Unfortunately, we paint individuals with one brush - good or bad based on a small set of things they have done. </div><div><br /></div><div>Take Indian politics. And specifically Prime Ministers. Manmohan Singh did a great job with the nuclear deal with the US. No one can also accuse him of personal corruption. But he was considered a weak Prime Minister and getting government files reviewed by the President of the Congress party and allowing corruption among his ministers are things that no one can forgive him for.</div><div><br /></div><div>Coming to Narendra Modi. Even his toughest critics have to give him credit for his foreign policy successes. Demonetisation and the dilution of the powers of the institutions of democracy are things that definitely go against him. The farm laws, I am told, were steps in the right direction but unfortunately could not go through.</div><div><br /></div><div>Why can't we accept that our leaders do some good things and can also make mistakes in other things? Why do we need them to be ideal human beings? </div><div><br /></div><div>We need to correct the way we use social media to ensure we get several kinds of views. If you are a supporter of one party, maybe follow a few handles of other parties as well. That way the algorithms can show you a mix of content which will help you to have a more balanced viewpoint.</div><div><br /></div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com1tag:blogger.com,1999:blog-4155770613355202151.post-27626945327109235832023-10-22T16:32:00.000+05:302023-10-22T16:32:27.222+05:30A drug for aHUS: Currently Recruiting Adult Patients in India<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNdlWxdKTLp_NjzIZY980foP0_IxWA68XZsgDpV9d3z7W380isz3ToyF74LNmivWnAx872FpRZrmlr4DtSM66BrnVIhrTSp9Kec2VPVe2N51xLrcEl1huEy3siHqJO9DTFrwA4ui19co1TG7iuJCONtmIHk3I1ea57zQLghL6qCWxjQqX6Rmb9G8jPC8/s275/download.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="184" data-original-width="275" height="184" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNdlWxdKTLp_NjzIZY980foP0_IxWA68XZsgDpV9d3z7W380isz3ToyF74LNmivWnAx872FpRZrmlr4DtSM66BrnVIhrTSp9Kec2VPVe2N51xLrcEl1huEy3siHqJO9DTFrwA4ui19co1TG7iuJCONtmIHk3I1ea57zQLghL6qCWxjQqX6Rmb9G8jPC8/s1600/download.jpeg" width="275" /></a></div><br /><div><br /></div><p><a href="https://www.novartis.com" target="_blank">Novartis</a> is currently recruiting adult patients in India in <a href="https://clinicaltrials.gov/study/NCT04889430" target="_blank">clinical trials for its twice-a-day oral drug Iptacopan</a>. This is a very good opportunity for clinicians in India to enrol their patients into this trial. Here are the locations where they are recruiting patients:</p><p></p><ul><li>Thiruvananthapuram</li><li>Chennai</li><li>Vellore</li><li>Pune</li><li>Lucknow</li><li>Nagpur</li><li>Chandigarh</li></ul><p></p><p>This trial is only for those who have not progressed to End Stage Kidney Disease requiring dialysis. They need patients who have been diagnosed recently and those have an active disease. The listing of this trial in the <a href="https://clinicaltrials.gov" target="_blank">Clinical Trials website</a> states that eligible patients need to have "evidence of thrombotic microangiopathy (TMA), including thrombocytopenia, evidence of hemolysis, and acute kidney injury". This is a fantastic opportunity for doctors who encounter aHUS patients who have not yet gone into kidney failure. Please give your patients a chance at a completely normal life by enrolling them in this Phase 3 trial after examining the eligibility criteria and ensuring that this trial could help your patient.</p><p>I get several emails from newly diagnosed patients who do not know what to do when they get diagnosed with this disease. This is a golden opportunity for them.</p><p>Unfortunately, when most of us with aHUS in India got diagnosed, there was no such trial going on in India and no drug was available in India. The only drug currently approved for sale across the world is <a href="https://en.wikipedia.org/wiki/Eculizumab" target="_blank">Soliris (drug name: Eculizumab)</a> from <a href="https://alexion.com" target="_blank">Alexion Pharmaceuticals.</a> Soliris is not being sold in India. It is also not possible to buy the drug and import it to India as the company does not sell it to individuals just like that. </p><p>Some companies claim to sell it to individuals but I am not sure of the authenticity or the reliability of such channels.</p><p>The drug availability for aHUS in India is slowly changing. More companies are likely to bring their drugs to the country. For clinical trials and even for sale after approvals. The way they will price their drugs is still unclear. The challenge of recovering their research costs from a very minute size of the population still remains. India is attractive for two reasons - the potentially large number of patients and the non-availability of any other drug for the disease.</p><p>So, those with aHUS - don't lose hope just yet! A solution may be coming soon.</p><p><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com0tag:blogger.com,1999:blog-4155770613355202151.post-6744035534117529282023-09-30T16:00:00.002+05:302023-09-30T16:00:26.588+05:30Why is my Beta-2 microglobulin rising despite Daily Nocturnal Hemodiafiltration?<div>I <a href="https://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">switched</a> to Daily Nocturnal Home Hemodiafiltration (DNHDF) in June 2022 because my Beta-2 Microglobulin (Beta-2m) levels were rising. This caused problems like Carpal Tunnel Syndrome and shoulder pain at night, especially when it was cold. Many long-term dialysis patients have high Beta-2m levels and hemodiafiltration is supposed to help.</div><div><br /></div><div>I chose DNHDF because I wanted the benefits of gentle fluid removal along with the benefits of HDF. I wrote about my experiences after <a href="https://www.kamaldshah.com/2022/07/daily-nocturnal-home-hdf-1-month-update.html" target="_blank">one month</a>, <a href="https://www.kamaldshah.com/2022/10/daily-nocturnal-home-hdf-three-month-updat.html" target="_blank">three months</a>, <a href="https://www.kamaldshah.com/2022/12/daily-nocturnal-home-hdf-six-month.html" target="_blank">six months</a>, and <a href="https://www.kamaldshah.com/2023/06/daily-nocturnal-home-hdf-1-year-update.html" target="_blank">one year</a>. The results were good till June this year when I completed one year on DNHDF. My Beta-2m was at 12,047 ng/ml. This was after it touched 23,017 ng/ml in July 2022.</div><div><br /></div><div>However, the shoulder pain that had completely gone last year returned in August this year. I checked my Beta-2m and was surprised to find it at 15,772 ng/ml. In September, it went up to 17,300 mg/ml.</div><div><br /></div><div>I am really concerned right now. When dialysis patients have a high Beta-2m, they are asked to do at least once a week HDF and ideally all three sessions HDF. I am doing HDF on steroids, literally! 5 nights a week, 7.5 hours each night. All HDF. What more can I do?</div><div><br /></div><div>I am honestly quite perplexed!</div><div><br /></div><div>Why is the Beta-2m going up all of a sudden after one year of behaving well? I have got several blood tests done and none of them show any problems. I have sent my RO water for complete chemical and microbiological analysis and am waiting for the results. Once these results come, I plan to consult my nephrologist and hope he has some ideas on how to fix this.</div><div><br /></div><div>The consequences of increasing Beta-2m are quite scary. So, I really would like to fix this before it becomes bad.</div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com2tag:blogger.com,1999:blog-4155770613355202151.post-59452987085094506852023-09-23T12:20:00.007+05:302023-11-25T14:20:40.063+05:30I spoke at TEDx Hyderabad!<p>A few months back, Vikram, the Founder and CEO of NephroPlus, where I am the Co-Founder, pinged me forwarding a Whatsapp message from someone asking if I could speak at the upcoming TEDx Hyderabad event. I was excited!</p><p><a href="https://en.wikipedia.org/wiki/TED_(conference)" target="_blank">TED</a> stands for Technology Entertainment Design and is an <a href="https://www.ted.com" target="_blank">American-Canadian organisation</a> that posts international talks online. Over the years, the topics have become more widespread beyond just the three topics that form the abbreviation. TED is the original global event and is held once a year, nowadays in Vancouver, Canada.</p><p>TEDx events, on the other hand, are independently organised events under license from TED. TEDx events are organised in several locations serving the needs of smaller communities but on the same lines as the original TED event.</p><p>I got to know about TED sometime in the early 2000s. I was fascinated by the speakers and the visual spectacle these talks were. One of the first talks that I saw was <a href="https://www.ted.com/talks/pattie_maes_pranav_mistry_meet_the_sixthsense_interaction" target="_blank">"Meet the SixthSense Interaction"</a> and remember being mesmerised by the technology demonstrated in that talk. Over the years, I have watched several talks and have almost always been fascinated by them.</p><p>So, when Vikram sent me that message asking if I could speak at TEDx, I was thrilled!</p><p>The team from TEDx Hyderabad reached out in a few days and we had a video call where they heard my story in my own words and talked about how the event would flow. They also asked me to start working on my speech. We had several conversations over the next few weeks. The team was immensely helpful. For someone who has never spoken in front such a large audience before (they were expecting 1500 people), the encouragement they gave was really a boon.</p><p>About a month before the event, I had my speech ready. Over the next couple of weeks, I had practised several times and thought I was fully ready. One Saturday evening I asked my parents and brother, Prasan, to listen to it. While my parents were very happy with it, Prasan said, "It was very good. Only about 70% needs to be changed!" I felt the floor beneath my feet opening up and swallowing me whole.</p><p>Over the next half an hour, he asked me to make several changes including the most important one - add humour! I protested, "how could you add humour to this kind of story?" He gave me some suggestions. I incorporated all his suggestions over the next 24 hours and did another round before him and my parents the next evening. This time, he actually applauded! I was relieved.</p><p>One day prior to the event, they had rehearsals at the venue. I was the first to go and I messed up on the slides. I forgot to change the slides as I had not practised with the slides! I got back home and practised with the slides 3-4 times and felt confident by the end of the day.</p><p>On the event day, as we reached the venue, we saw a huge crowd had gathered at the venue. I was told I would be the third speaker in the first session. The organisers introduced me when it was my turn to speak. I was fairly calm and walked to the stage and well, just did my thing. I thought it went pretty well. I got a standing ovation!</p><p>After my talk, during the breaks, several people came up to me asking for a picture and said they were really inspired by my talk. That was good to know.</p><p>The event was really well-organised and executed flawlessly by the TEDx Hyderabad team. The entire experience was one I will remember for years to come. I am truly grateful for being given this opportunity.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5H_Kk39-NHwPPpau7SY9b7MNur8eiSn_mJdNmg14PO6IGyWm01ClYzfTAlaIehtTwxv65bjpAeBGwZdG3nUG26ztpG9_OlqDGdYwBPQ2yvzTQol8ZASxNtt1FNrEBYkMqXxpffaHlMmVQwpxL1J0KFobhvF7uWF_cnfYe_TWt6KKkdL_zbICYVD96CFI/s1600/IMG_3187.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5H_Kk39-NHwPPpau7SY9b7MNur8eiSn_mJdNmg14PO6IGyWm01ClYzfTAlaIehtTwxv65bjpAeBGwZdG3nUG26ztpG9_OlqDGdYwBPQ2yvzTQol8ZASxNtt1FNrEBYkMqXxpffaHlMmVQwpxL1J0KFobhvF7uWF_cnfYe_TWt6KKkdL_zbICYVD96CFI/w400-h300/IMG_3187.JPG" width="400" /></a></div><br /><p><br /></p><p><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com5tag:blogger.com,1999:blog-4155770613355202151.post-39006882734127681682023-08-15T16:57:00.001+05:302023-08-15T16:57:17.862+05:30Tashkent Diary<p>At NephroPlus, we launched operations in Uzbekistan more than a year ago and within a short span, we had 3 centres operational - in Nukus, Urgench and Bogot. The largest centre, however, was being built in Tashkent, the capital of Uzbekistan. This was going to be the world's largest dialysis centre with 165 machines. All the centres in the country are under the Build-Operate-Transfer model with the Government of Uzbekistan paying NephroPlus for the services and the patients not paying anything. I firmly believe this is the future of dialysis around the world. Apart from the very rich, no one can afford this chronic treatment for so long.</p><p><b>Inauguration</b></p><p>After a three-hour flight from Delhi, I landed in Tashkent at about 3 AM and after a long wait for baggage, drove to the hotel. I could sleep only for a couple of hours before waking to head to the centre. I could hardly contain my enthusiasm to see the centre. I had seen videos and pictures in the past but seeing the actual building in all its glory was something else. <a href="https://drive.google.com/file/d/1BLvo-6weHVf9qI7bYOd1w2EGrYvKWhrR/view?usp=share_link" target="_blank">Here is a video that shows the whole centre</a>. The voice is in Uzbek but you will get a good idea about how well the centre has come up.</p><p>Here are a few pics of the centre and the inauguration:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJao7PwvgHNQv51Fw74ofTP-1sB9GrJUjUl6Bax3BQOfFeBmqDnb3x-QD4us8A0wMqErNxMhc9rVf6SVl8WYVln_6sG8SBoXbCPaMGfJIyZpbhtxtyjTUuNSAC5KyRqTGt731__Dql_-_3qkLuv0dYw5d5o8_CBGSUi8iY8IQ0YBzyGMeT7PgjBPyF2e4/s1024/cab54287-6e5b-4faf-8a48-831415edffcc.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJao7PwvgHNQv51Fw74ofTP-1sB9GrJUjUl6Bax3BQOfFeBmqDnb3x-QD4us8A0wMqErNxMhc9rVf6SVl8WYVln_6sG8SBoXbCPaMGfJIyZpbhtxtyjTUuNSAC5KyRqTGt731__Dql_-_3qkLuv0dYw5d5o8_CBGSUi8iY8IQ0YBzyGMeT7PgjBPyF2e4/s320/cab54287-6e5b-4faf-8a48-831415edffcc.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-U9_WSz31Hd3TaSJzmBDvxIHq3w-QFBtGhADXO5hmg2pROGyA6mrmD32Eyyqh-E43UJnk0YYvSMnONXzLZeD5yockRzh6rtQp2hwu9kIdr43wKT6xY7CL3BejNYyA8arN1979jn-pPbApOEl0lTkdHvVsBE-DjcZJBiUGG885IYx_mCaa9GAa0nUGopk/s1920/Davr%2020.00_11_10_12.Still009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-U9_WSz31Hd3TaSJzmBDvxIHq3w-QFBtGhADXO5hmg2pROGyA6mrmD32Eyyqh-E43UJnk0YYvSMnONXzLZeD5yockRzh6rtQp2hwu9kIdr43wKT6xY7CL3BejNYyA8arN1979jn-pPbApOEl0lTkdHvVsBE-DjcZJBiUGG885IYx_mCaa9GAa0nUGopk/s320/Davr%2020.00_11_10_12.Still009.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Qr8DBBEYlyWH0HCN1InZaUCYNpkANfEbReo_z74KZ8vvbrNMu-iTcrCla0U7ICcwMY2g2gYTkKOYqYXZNPfTOcNW4o5p0AxnKf94usNdYnIUQCW5zgBxKfjVvvQR1x57LViV0YxEqSabc-M4q9xIp0u_B-PSWst8Kruhx27dbW0LMUZX0waQzgFvlE4/s1920/Davr%2020.00_50_44_18.Still031.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Qr8DBBEYlyWH0HCN1InZaUCYNpkANfEbReo_z74KZ8vvbrNMu-iTcrCla0U7ICcwMY2g2gYTkKOYqYXZNPfTOcNW4o5p0AxnKf94usNdYnIUQCW5zgBxKfjVvvQR1x57LViV0YxEqSabc-M4q9xIp0u_B-PSWst8Kruhx27dbW0LMUZX0waQzgFvlE4/s320/Davr%2020.00_50_44_18.Still031.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMgL4538I2K9KcQkxF65dQZFVjao2yOW2RM1FmPwrsP4J7FqNqLGHbvQ420c7KvqgLU7CF_FKXGlkhevh8zSQbN2hqHA45FWJyYjmZx3r5TW98__b8nY4syqbs5AaoG858Hnhb84UI0nHM767Ic-1V9o9fltjlVVN7ie-Kwcg5TUAG8yn8r-8rVNTMPcQ/s1920/Davr%2020.01_04_12_20.Still038.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMgL4538I2K9KcQkxF65dQZFVjao2yOW2RM1FmPwrsP4J7FqNqLGHbvQ420c7KvqgLU7CF_FKXGlkhevh8zSQbN2hqHA45FWJyYjmZx3r5TW98__b8nY4syqbs5AaoG858Hnhb84UI0nHM767Ic-1V9o9fltjlVVN7ie-Kwcg5TUAG8yn8r-8rVNTMPcQ/s320/Davr%2020.01_04_12_20.Still038.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvPy9tuTHZfio-FDd-xFjkAj8SPb8aCUtHzb2QBWCZSPLUkALyU3j8XB3_-QrAJnrMbbxmx8sfhAAAFmGt9_hgc1HLPtUjj2lRrkxEPJmMD9zH89P_Sv8OR4sfBBeATeu_uj2feqGslnF3p8Q00Xyy-PjBm-FYBjDk9kFuLKLJhKEUZWXkpxDAAgkhcTY/s4032/IMG_3074.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvPy9tuTHZfio-FDd-xFjkAj8SPb8aCUtHzb2QBWCZSPLUkALyU3j8XB3_-QrAJnrMbbxmx8sfhAAAFmGt9_hgc1HLPtUjj2lRrkxEPJmMD9zH89P_Sv8OR4sfBBeATeu_uj2feqGslnF3p8Q00Xyy-PjBm-FYBjDk9kFuLKLJhKEUZWXkpxDAAgkhcTY/s320/IMG_3074.HEIC" width="240" /></a></div><br /><p>The inauguration went off very well and the staff and I were excited to be seeing each other for the first time. The inauguration was graced by Vikram Vuppala, Founder and CEO of NephroPlus, officials from the Government of Uzbekistan and executives from International Finance Corporation and Asian Development Bank. both of which have been closely involved with this project.</p><p><b>Centre</b></p><p>I was there the whole week. I had ordered a NephroPlus technician uniform when we underwent a rebranding exercise a few months back. I had carried it along with me. Since the administrative office was on the third floor of the same building with the centre divided into 5 blocks on the first and second floors, I kept going to the centre and spent time with the clinical staff and our guests (patients). My uniform held me in good stead. I also spoke to all the clinical staff (in four batches of 25 each) and many guests (two batches of about 25 each) and introduced myself and answered their questions. Guests were very happy with the quality of dialysis they were getting. They felt much better compared to the previous centre.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBz3UYtTAwO0YX6GoEYpJ58mAN77GpiYd3KqSFgZT_x_du41huJ9fKp8Gb2IydT1Wd53jbS94HkyJ6I1_1hVMVDZHlfamHB10yKUCeWuYbjvejU89cz2g_KlZTUkz7rC0HtkOfGgyq0TYexTZTXB9Cj-vHEGBDwY5Bs9f3lqlC-8Oxu0tVDsbF4yq_8M/s1024/a8dc06f8-6e3a-47d2-827f-ebf07ed9652c.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="623" data-original-width="1024" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBz3UYtTAwO0YX6GoEYpJ58mAN77GpiYd3KqSFgZT_x_du41huJ9fKp8Gb2IydT1Wd53jbS94HkyJ6I1_1hVMVDZHlfamHB10yKUCeWuYbjvejU89cz2g_KlZTUkz7rC0HtkOfGgyq0TYexTZTXB9Cj-vHEGBDwY5Bs9f3lqlC-8Oxu0tVDsbF4yq_8M/s320/a8dc06f8-6e3a-47d2-827f-ebf07ed9652c.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_tw91Xucxh0G51zls01CDtXto65XQjvArURYCy5isD7dYEcBwdcC-QZs34eT80wRWa2hJzN1pMIzy-92c8FWheXPiotxf8JbAFLB6PCLkS7-lzLyBQ8DUPKkM-W7RZK3gXiOKqidJnJr9nzWjM5xdzzDkkuM-fHUm2qYrNhB3e0HF5LDBfygLz8mHus/s1280/IMG_3123.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="576" data-original-width="1280" height="144" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_tw91Xucxh0G51zls01CDtXto65XQjvArURYCy5isD7dYEcBwdcC-QZs34eT80wRWa2hJzN1pMIzy-92c8FWheXPiotxf8JbAFLB6PCLkS7-lzLyBQ8DUPKkM-W7RZK3gXiOKqidJnJr9nzWjM5xdzzDkkuM-fHUm2qYrNhB3e0HF5LDBfygLz8mHus/s320/IMG_3123.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaJjd8aPpBI_P65eRM0C1GG1JXDKqjgLE2fjg3Njxxe6CV9bf7qHAMcFe1v2PB4oCAI-oNymZSSWUIBINvlK44WYXYhuPP1LEWbyUa0Y-8IZ38GTJStl5kV75eh_o8GDLTOU5-9VzYf8ITMI5jyMiN67WTn9_U0sx0VFVn4b7mE8PzlVnXlsyBjQv5vCw/s4032/IMG_3113.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaJjd8aPpBI_P65eRM0C1GG1JXDKqjgLE2fjg3Njxxe6CV9bf7qHAMcFe1v2PB4oCAI-oNymZSSWUIBINvlK44WYXYhuPP1LEWbyUa0Y-8IZ38GTJStl5kV75eh_o8GDLTOU5-9VzYf8ITMI5jyMiN67WTn9_U0sx0VFVn4b7mE8PzlVnXlsyBjQv5vCw/s320/IMG_3113.HEIC" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p><b>Food</b></p><p>Food in Uzbekistan is heavily focussed on bread and meat. Vegetarian options for folks like me are few. However, Narayanan, who heads Operations from NephroPlus in the country made sure I got a nice, vegetarian lunch every day of my trip. If it was somsa one day, it was dal soup another day. One day we had something like spring rolls and another day we had something like a cheese and veggie roll. The food is blander than what Indians are used to. But combine this with salad, bread and fruits and it all adds up to a very hearty lunch. Fruits were the highlight of the food, though. Uzbek culture places fruits very high up the order in any meal. While berries were my favourite, the melons, kiwis, grapes and peaches were also some of the best I have ever had.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitUL7HzCQ61fJprPIC__mYkR3STSwvE4x2j7neRuNsV6mLVllercoso1aLpqBav5q3bJKN26iwuAiRk0CYk1cC6lOmeLU2BpVEqHraweMxF5CE6ZnwNrcXIXcv5YLmA2j8t20-bdgv50sdtuw8y5pZ32fG8bScZPNtjuNW9_tF_WPoKCTxdmurMWI855o/s4032/IMG_3108.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitUL7HzCQ61fJprPIC__mYkR3STSwvE4x2j7neRuNsV6mLVllercoso1aLpqBav5q3bJKN26iwuAiRk0CYk1cC6lOmeLU2BpVEqHraweMxF5CE6ZnwNrcXIXcv5YLmA2j8t20-bdgv50sdtuw8y5pZ32fG8bScZPNtjuNW9_tF_WPoKCTxdmurMWI855o/s320/IMG_3108.HEIC" width="240" /></a></div><p>The Uzbek people though have very unhealthy eating habits. It involves a lot of red meat and soda. Many people have a cola or a Fanta with every meal. Smoking rates are also very, very high.</p><p><b>People and the City</b></p><p>The Uzbeks are a lovely people. Extremely warm and affable, it is a pleasure to interact with them. They are also very law-abiding. During the whole week I was there, I saw probably one or two policemen - that too, at an accident site. Normally, you just don't see the cops. Apparently, the government has installed CCTV cameras and imposes heavy penalties on anyone breaking the law. This has worked really well.</p><p>The city does see extreme weather - hot summers and biting cold winters. It is a double landlocked country - not only is the country itself landlocked, the countries bordering it are also landlocked.</p><p><b>Dialysis</b></p><p>The best part about visiting a place where there is a NephroPlus centre is the convenience of getting good quality dialysis. I got three night sessions there. The best part about this was I didn't have to restrict my fluid and diet. I could eat and drink pretty much anything I wanted to. All three sessions went off without any problems.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLQfzA9-ISkxUFqDarjVidNoJl6SWHv44cW1EJyKn4Es3yNfI_HdKH8ugOzYzQDXY8kPbcJ00f0rt7xOXyKyvb6JTNpVR-OjI0YsSuZWaP2dVHfRCHr4aoVNj0L-F29gZbDsjxz9nAHZfKuF9poYSFCcbVau3WWpanalI95oWLlhEddx-SlC9V5BEZ6ns/s4032/IMG_3073.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLQfzA9-ISkxUFqDarjVidNoJl6SWHv44cW1EJyKn4Es3yNfI_HdKH8ugOzYzQDXY8kPbcJ00f0rt7xOXyKyvb6JTNpVR-OjI0YsSuZWaP2dVHfRCHr4aoVNj0L-F29gZbDsjxz9nAHZfKuF9poYSFCcbVau3WWpanalI95oWLlhEddx-SlC9V5BEZ6ns/s320/IMG_3073.HEIC" width="240" /></a></div><p><b>It finished too soon!</b></p><p>On Saturday morning, I took the 8:45 AM flight back to Delhi. As the plane took off, I settled in listening to music and drafted an email thanking my team for the wonderful work they did building out the centre and for making a deep impact on the Uzbek healthcare system. A little later, I had a moment of weakness. Thankfully, there was no one in the seat next to me. So, for a couple of minutes, I just let go. I don't know what it was, really. Was it the love of my team? Was it the bond I developed with the guests? Was it the people of the country? Maybe a mix of everything? I have no clue. </p><p>I would love to go back to Uzbekistan soon. Nothing can beat the feeling of being where it all happens - on the floor, among the team and the guests.</p><p>Rahmat, Uzbekistan!</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com3tag:blogger.com,1999:blog-4155770613355202151.post-70662738782106847422023-06-29T17:53:00.003+05:302023-06-29T17:53:54.994+05:30Daily Nocturnal Home HDF - 1 Year Update<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji9lkv5xF_Jd-Sm8AtUp9wY9Pt3xGI1xYgxIIVDRwYDnZMwd97NplGYzILmcqlNwU-HbGX0updm_3vJkCxTnghVB0zwbLTslcf4LU5JG54lyz7gZb6pRx_oB5rbRG788xNUhGCVzxSrbgFy3Zs9rsQluFVJyjD0wMwFZmbVHSeg1VJdUGqXZmp7RCQyGw/s1024/Success-1024x768.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji9lkv5xF_Jd-Sm8AtUp9wY9Pt3xGI1xYgxIIVDRwYDnZMwd97NplGYzILmcqlNwU-HbGX0updm_3vJkCxTnghVB0zwbLTslcf4LU5JG54lyz7gZb6pRx_oB5rbRG788xNUhGCVzxSrbgFy3Zs9rsQluFVJyjD0wMwFZmbVHSeg1VJdUGqXZmp7RCQyGw/s320/Success-1024x768.jpeg" width="320" /></a></div><br /><p>I <a href="https://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">switched to Daily Nocturnal Home HDF</a> in June 2022. It has now been a year since I made that switch. The primary reason I switched was my <a href="https://en.wikipedia.org/wiki/Beta-2_microglobulin" target="_blank">Beta-2 Microglobulin</a> (Beta-2m) had become very high, causing shoulder pain especially when it became cold at night and I was on dialysis. This was due to a condition called <a href="https://en.wikipedia.org/wiki/Haemodialysis-associated_amyloidosis" target="_blank">Dialysis-related Amyloidosis</a> (DRA). Conventional dialysis - even more frequent, long duration dialysis with a high flux dialyser removes only some Beta-2m. This modality removes more than thrice weekly, low flux dialysis for four hours. But apparently, still not enough. So, I switched to Daily Nocturnal HDF about a year back. </p><p>I wrote about my experience <a href="https://www.kamaldshah.com/2022/07/daily-nocturnal-home-hdf-1-month-update.html" target="_blank">1 month</a>, <a href="https://www.kamaldshah.com/2022/10/daily-nocturnal-home-hdf-three-month-updat.html" target="_blank">3 months</a> and <a href="https://www.kamaldshah.com/2022/12/daily-nocturnal-home-hdf-six-month.html" target="_blank">6 months</a> after switching. Here is an update after a year.</p><p>My Beta-2m level is at the lowest it has been ever since I switched to this modality. It is 12,047 ng/ml (normal range - 604 to 2,286 ng/ml). Before I switched to this modality, it was 20,476 ng/ml. So, there has been a significant reduction. Not normal yet. But slowly getting there.</p><p>The good thing is the shoulder pain has gone. That is a major relief. </p><p>Another thing that this modality is helping with is the prevention of further build-up of Beta-2m in my body which can cause more severe DRA including deposits of Amyloid on my spine, heart and brain which can be fatal eventually.</p><p>Also, this modality reduces the risk of complications like hypotension and cramps during dialysis. I did not find too much of a difference here because I was already on daily nocturnal hemodialysis. </p><p>In summary, Daily Nocturnal Home HDF has addressed the main reason for which I switched very well. I hope to continue to see benefits as I enter the second year on this therapy.</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com6tag:blogger.com,1999:blog-4155770613355202151.post-1562313092736539182023-05-20T15:10:00.007+05:302023-05-20T15:16:02.827+05:30Impact of weekday on blood test results<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW9faVnijC60yyN61pMoh5GRmLULrSccQxX2lBGHL2fIJrdN3qQnLhS39zWST49QQJmKCDy9_TaX0kyXw1KsdlDs332zletkagOdq382930YqVC9heBnhdskLO8ErX5YCqVqINANzbIpNgZt80GLjiDzNRGXpht7KIk1Dz8IM9IQ91gqjSusXszwxD/s1024/Colors-of-the-Week-1-1024x688.webp" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="688" data-original-width="1024" height="269" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW9faVnijC60yyN61pMoh5GRmLULrSccQxX2lBGHL2fIJrdN3qQnLhS39zWST49QQJmKCDy9_TaX0kyXw1KsdlDs332zletkagOdq382930YqVC9heBnhdskLO8ErX5YCqVqINANzbIpNgZt80GLjiDzNRGXpht7KIk1Dz8IM9IQ91gqjSusXszwxD/w400-h269/Colors-of-the-Week-1-1024x688.webp" width="400" /></a></div><p>I learnt a very interesting thing recently. From personal experience. If you've been following this blog recently, you know <a href="https://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">I switched to Daily Nocturnal Hemodiafiltration</a> (HDF) to try and help with my increasing Serum Beta-2 Microglobulin (Beta-2m) levels. This toxin, one of the notorious 'middle molecules', does not get removed well with conventional low-flux dialysers and with conventional hemodialysis. I was advised to switch to Hemodiafiltration which is much better at removing these beasts from the blood.</p><p>My Beta-2m before switching to HDF (on 3rd June 2022) was 20,476 ng/ml. The normal range is 604 to 2,286 ng/ml. Yes, I know. My level was very high indeed. Here is a table that shows how my Beta-2m trended over the last one year.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjxYV0xTjrDjko0hfjFx8CGskL139wrt7SOdg_vuqTVZUuVy33SzIoDMUd87r0VXoiiK4r5sSUoRnZlxFrgbuuNSnIBSu8qSA6lYEhGzXE4WbPIbhIuiQk-g8RtKnepuD3-aYgyaYjCw1Vij-WbbhPeiOLdfpbc_qei7aZjE4Q9M_bxAP3L755lLRGi" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="66" data-original-width="337" height="99" src="https://blogger.googleusercontent.com/img/a/AVvXsEjxYV0xTjrDjko0hfjFx8CGskL139wrt7SOdg_vuqTVZUuVy33SzIoDMUd87r0VXoiiK4r5sSUoRnZlxFrgbuuNSnIBSu8qSA6lYEhGzXE4WbPIbhIuiQk-g8RtKnepuD3-aYgyaYjCw1Vij-WbbhPeiOLdfpbc_qei7aZjE4Q9M_bxAP3L755lLRGi=w503-h99" width="503" /></a></div><br />The value is trending downwards apart from that blip in April this year. The trend is due to Daily Nocturnal HDF. However, notice the last column. The values are significantly lower (compared to the trend line) when I have got 3 days of continuous HDF compared to other values. This stands out quite clearly. The more the continuous days of dialysis I get , the lower the Beta-2m levels go. <p></p><p>Which, I know, seems quite intuitive. The more continuous dialysis you get, the more Beta-2m is removed from the body and the lower the level would go. But unfortunately, many of us don't keep that in mind. </p><p>This is a critical factor when it comes to measuring toxins that are removed by dialysis. I am guessing it wouldn't be that important for things that dialysis does not remove like Hemoglobin. I am not sure though.</p><p>But it is worth keeping this in mind. What is important in blood tests often, is the trend rather than the absolute value. So, best to stick to the same circumstances as much as possible - same lab, same time, same day of the week, same route to go to the lab. Ok, kidding about the last one.</p><br /><br /><p></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com2tag:blogger.com,1999:blog-4155770613355202151.post-41675424542304282252023-05-13T12:51:00.003+05:302023-05-13T12:51:18.802+05:30I complete 17 years on Daily Nocturnal Home Hemodialysis today<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXZaF_5TNQbRyxg8beLAzr0dHO1JjSIX503a1JVrDOAAnFefklVoNu3-C0eWOOjtO5X8zKbbqKNzzUR9aMcqq5r77LmzkA3mNa0kdRdgypQIDrzDc0b0YADL0ydFhRctIc6XyPzRTVoy52B3Ma2p1WAi4uTOyrBIWK1xSL8cco9fiY-JEe5BzK-crM/s640/27573933958_0b0c9b5c76_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXZaF_5TNQbRyxg8beLAzr0dHO1JjSIX503a1JVrDOAAnFefklVoNu3-C0eWOOjtO5X8zKbbqKNzzUR9aMcqq5r77LmzkA3mNa0kdRdgypQIDrzDc0b0YADL0ydFhRctIc6XyPzRTVoy52B3Ma2p1WAi4uTOyrBIWK1xSL8cco9fiY-JEe5BzK-crM/w300-h400/27573933958_0b0c9b5c76_o.jpg" width="300" /></a></div><div style="text-align: center;">My Home HD setup</div><p>It was 2006. I walked into my nephrologist, Dr. Girish Narayen's consultation room. He could see I was not happy. I had to give up Peritoneal Dialysis (PD), which had given me my life back. I was quite upset that I could no longer do PD. It was then that he told me about Daily Nocturnal Home Hemodialysis. It was some extraordinary foresight from him. At that time, hardly anyone was doing hemodialysis at home. And probably no one was doing more frequent, longer duration hemodialysis in India. </p><p>This did not deter Dr. Narayen. He asked me to explore it. I got onto the internet and started reading up about this modality. A lot of good things were being said. I was intrigued. I was also quite unsure. What if something happened during dialysis? How would it be handled?</p><p>I visited the homes of patients doing home hemodialysis in Mumbai. They were not doing daily nocturnal but just twice or thrice weekly sessions at home. After a lot of thinking and researching, I finally decided to take the plunge.</p><p>I can confidently say if it wasn't for this modality, I would not be alive today. Not only am I alive but I am doing fairly well. I am happy. I lead an almost normal life.</p><p>I am truly grateful for this modality!</p><p>You can read more about the entire journey in my book, 'Silver Lining', being released on the 22nd May. You can pre-order your copy <a href="https://www.amazon.in/dp/0670097969" target="_blank">here</a>.</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com3tag:blogger.com,1999:blog-4155770613355202151.post-27028200771655351322023-05-06T16:37:00.002+05:302023-05-06T16:38:03.792+05:30Announcing 'Silver Lining', my first book<p>Dear reader,</p><p>I am delighted to announce my first book, 'Silver Lining'. The book's publishing date is 22nd May. Pre-orders are open now and can be made <a href="https://www.amazon.in/dp/0670097969/" target="_blank">here</a>.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.amazon.in/dp/0670097969/" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" data-original-height="604" data-original-width="373" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWy2vyrfgJU3gsNjVSmftXEa7dhPTx5lxFvzV48E-IkhzfnDTRDiG3wC_3gMEeGmPOVWUb_kJgUbYoEDQ32wTRPazIm0Jmho2a0Vkw3_6HQJf98rxfqx1y3D1vPTNw3vjGOaTPp1lNfFDTjnCLfH9h3NzwojXR9-KPj8gPG-lCMmYY69x5GUZcXh-q/w248-h400/Final%20Cover%201.jpg" width="248" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p>Here is the description of the book from the publisher, <a href="https://penguin.co.in/book/silver-lining/" target="_blank">Penguin's website</a>:</p><p>"<i>In 1997, Kamal Shah’s world turned upside down. On his way to study in the US, Shah was completing the formalities for a student visa, which included preventive vaccinations for hepatitis, typhoid, measles, mumps and rubella. He developed a slight fever following his shots, which he dismissed as a normal side effect. Within twenty-four hours, Shah was forced to rethink. His condition deteriorated overnight, prompting an emergency rush to the hospital. Further tests revealed the unimaginable: an atypical hemolytic uremic syndrome (AHUS). Kamal needed a kidney transplant.</i></p><p><i>A year of painful haemodialysis later, Kamal underwent a renal transplant. His mother had donated her kidney to her son, in the hope that he could survive. The surgery was unsuccessful. In the last decade and a half, Kamal has switched between peritoneal and home dialysis. It has been a painful, terrifying journey, documented painstakingly on his personal blog. That blog was the kernel for NephroPlus, a company that was born from Kamal’s desire to ensure that dialysis became accessible for every patient. Kamal Shah is still on dialysis, but it has not dimmed his hope or his belief that being diagnosed with terminal kidney disease is not the end of life, nor can it prevent you from living the life you want to live. That hope has been the driving force behind NephroPlus.</i></p><p><i>Today, NephroPlus is one of Asia’s leading dialysis networks with 320+ centres across 4 countries, including India, Nepal, the Philippines and Uzbekistan. Since NephroPlus offers specialized dialysis, one factor that has been responsible for the overwhelming response has been their charges, which are 30-40 per cent lower than those in hospitals like Max or Apollo. This is the story not just of NephroPlus, but of an entrepreneur like no other.</i></p><p><i>This is a unique business memoir, with a strong, moving touch of the deeply personal. Kamal writes with raw honesty about pain and fear and the darker side of healthcare in India. Yet this is also a story of faith, of grit and determination and, ultimately, of success.</i>"</p><p>Thanks.</p><p>Kamal</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com3tag:blogger.com,1999:blog-4155770613355202151.post-88461498493506517792023-05-01T15:53:00.005+05:302023-05-01T15:53:51.840+05:30Complications of long-term dialysis<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYAevrtD6y_Wl4U_OSmIt6G292eICxHermrZ9iVva-KcJ9scD0RiwgdQXDCU0mhnFNQL76L91akKn8pJR1IjFJDvUzTZJRfVFC9DJ3cnc1M5ZgAzGjLpdt68QqRO752g18ZrXoLTPPcND4XJFyeLH_mX6mPb3Gxcuk4W6zzWlQeEvL0bJfz6VubOvX/s1294/JX_Blog20_06_155387711_web.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="760" data-original-width="1294" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYAevrtD6y_Wl4U_OSmIt6G292eICxHermrZ9iVva-KcJ9scD0RiwgdQXDCU0mhnFNQL76L91akKn8pJR1IjFJDvUzTZJRfVFC9DJ3cnc1M5ZgAzGjLpdt68QqRO752g18ZrXoLTPPcND4XJFyeLH_mX6mPb3Gxcuk4W6zzWlQeEvL0bJfz6VubOvX/w400-h235/JX_Blog20_06_155387711_web.jpeg" width="400" /></a></div><p>With many people getting diagnosed with kidney failure at a young age and with better survival on dialysis due to better techniques and safety in dialysis machines and centres, more and more people are living for longer on dialysis compared to a few years back.</p><p>However, despite better dialysis quality, nothing can come close to a healthy human kidney. That is why, over time, many dialysis patients develop certain complications which can become problematic. Some of them can be prevented. Some can be treated. And yet, there are some about which nothing can be done.</p><p>Here are a few of them.</p><p><b>Cardiac problems</b> are one of the most common faced by long term dialysis patients. An adult healthy human heart is capable of pumping about 5-6 litres of blood. Since long term dialysis patients typically pass little or no urine, the excess fluid builds up in the blood between two dialysis sessions. This causes the heart to pump a higher volume of blood than it is capable of pumping. The more the excess fluid, the more the strain on the heart. This causes the heart to enlarge and eventually fail where it is unable to pump efficiently. </p><p>Rapid removal of this excess fluid causes 'myocardial stunning' which is also harmful for the heart.</p><p>Most dialysis patients die of heart failure and not directly due to kidney failure. To reduce the extent of this problem, patients can try to increase the number of hours of dialysis per week by either increasing the dialysis frequency or the duration of the session or both.</p><p><b>Bone problems</b> are caused in long-term dialysis patients when there is an imbalance of Calcium, Phosphorus and Parathyroid Hormone. Vitamin D and Alkaline Phosphatase also play a role. This imbalance causes several problems. Bone loss happens because of which there is an increased tendency for fractures. <a href="https://en.wikipedia.org/wiki/Calciphylaxis" target="_blank">Calciphylaxis</a> is a life-threatening condition where calcification of blood vessels causes lesions under the skin etc. This is thought to be preventable by keeping the product of the Serum Calcium and Serum Phosphorus to less than 55 when both of these parameters are reported in mg/dL.</p><p><b>Neuropathy</b> is a problem that occurs mainly in the feet and hands. This results in numbness and a condition called restless legs syndrome. While these two problems can be relieved partially with medication, sometimes, the symptoms are so bad that patients don't realise it when they get injured and these injuries can get serious. So those with this condition should have someone examine their feet regularly for any signs of injury.</p><p><b>Dialysis-related Amyloidosis</b> (DRA) is a condition where Beta-2 Microglobulin starts depositing in different parts of the body. These deposits cause a variety of symptoms ranging from pain to numbness and sometimes even more severe symptoms like strokes and cardiac arrests if they are deposited in the brain or the heart. DRA can be prevented to a large extent by doing more efficient dialysis by using a High Flux Dialyser or undergoing Hemodiafiltration. Regular dialysis does not remove Beta-2 Microglobulin and other molecules, causing them to be retained within the body and then start depositing in different parts of the body.</p><p><b>Sexual Dysfunction </b>is fairly common among long-term dialysis patients. Lack of desire in both sexes and erectile dysfunction in males are widely prevalent. There are treatments that work for some people and do not work in others. But it is worth talking to your doctor about the specific problem.</p><p>There are a few other problems that are not major but can be bothersome. Thinning of the skin (tendency to get cut easily), hair loss, muscle weakness are some of them. Muscle weakness can be prevented and to some extent treated as well by <a href="https://www.kamaldshah.com/2018/06/the-importance-of-strength-training-on.html" target="_blank">strength training</a>. Patients should try and incorporate strength training into their daily routine as early as possible.</p><p>So, not a pretty picture! But as you can see, many of these problems can be prevented or treated. It is important for us to be aware of the possibility of these conditions and take preventive action where possible. Talking to your doctor in a free and open manner is the key to not suffering needlessly. I have come across many patients who just don't do that. As a result, they have to suffer unnecessarily. So, please develop a relationship with your doctor where you can discuss these things and ask for solutions. They exist, at least most of the time.</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com0tag:blogger.com,1999:blog-4155770613355202151.post-7970574420932070892023-03-26T12:15:00.003+05:302023-03-26T12:15:22.483+05:30Muscle Stiffness in Dialysis Patients - Tips to Prevent and Overcome<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQTI6Udlg2nyBXanMljjqPAWU6DX9hKN0Fedxp5b6RTXc87fK9v127E_M3nbU6eEosQqvfHX2WJWjic8Qc9Niqw5Vb1iIJdRS43LwKmvOzilCZhm-vswcieI4um6ayXmI1fr0fTiXMvPE38041CKoER8fdMs0AiIFORdedjTtZb5hKip9dxkG-zdec/s600/Back-pain-tightness.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="600" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQTI6Udlg2nyBXanMljjqPAWU6DX9hKN0Fedxp5b6RTXc87fK9v127E_M3nbU6eEosQqvfHX2WJWjic8Qc9Niqw5Vb1iIJdRS43LwKmvOzilCZhm-vswcieI4um6ayXmI1fr0fTiXMvPE38041CKoER8fdMs0AiIFORdedjTtZb5hKip9dxkG-zdec/w400-h210/Back-pain-tightness.jpeg" width="400" /></a></div><div><br /></div>I have been on dialysis for close to 26 years now. One problem I face a lot which hampers my quality of life is muscle stiffness. This prevents me from doing a lot of things and also results in pain from time to time.<div><br /></div><div>Many dialysis patients lead a sedentary life. This lack of physical activity coupled with all the biochemical imbalances that kidney failure brings about results in several changes in the muscular and skeletal systems of the body. This results in difficulty in making some movements that otherwise healthy people make with ease.</div><div><br /></div><div>Trouble is we realise it late. Like I did. We are so busy dealing with the more immediate<span> </span>problems that kidney failure brings about that we neglect those problems that develop long term and don't focus on things that can prevent them.</div><div><br /></div><div>Those who have been diagnosed with kidney failure recently however, should make use of the experience of those who've been on long term dialysis and take corrective steps as soon as possible.</div><div><br /></div><div>Here are some things that you can do to prevent this from happening and some tips on dealing with it if it has already happened.</div><div><br /></div><div><b>1. Exercise</b></div><div><b><br /></b></div><div>Do some form of exercise as soon as you can. While this may be difficult in the early days of your diagnosis, as soon as you get stable (may be about 3-4 months), speak to your nephrologist about incorporating some form of exercise into your daily routine. It could be as simple as walking or swimming. Start small. Increase gradually.</div><div><br /></div><div><b>2. Stretch</b></div><div><b><br /></b></div><div>It is very important to do some form of stretching to prevent stiffening of your joints and muscles. Consult a physical therapist and see if you can learn some exercises from him that allow you to stretch these parts. Make sure they know you are on dialysis and if in doubt, have them speak to your nephrologist.</div><div><br /></div><div><b>3. Yoga</b></div><div><b><br /></b></div><div>Yoga is a fantastic way to keep your body supple and flexible. It takes care of stretching all the important parts of your body and also provides you with mental peace, a really good side effect! The various <i>asanas </i>are designed to ensure both of these, provided you do it the right way. That is why it is very important to learn it from a good teacher and not simply follow videos or television programs.</div><div><br /></div><div><b>4. Strength Training</b></div><div><b><br /></b></div><div>I have <a href="https://www.kamaldshah.com/2018/06/the-importance-of-strength-training-on.html" target="_blank">written about this</a> in the past already. But strength training is one thing that will keep you from losing the ability to do basic things like getting up from a chair without using your hands, standing on one leg while wearing your clothes and so on without ever requiring help from someone else. This will do wonders for your self esteem. </div><div><br /></div><div><b>5. Ultrasound and Interferential Therapy</b></div><div><b><br /></b></div><div>If you have pain in a particular part of your body (like the lower back, for example), these two techniques may help get rid of it. Physical Therapists typically have portable devices that allow them to administer these therapies at your home if you prefer. <a href="https://www.physio-pedia.com/Therapeutic_Ultrasound" target="_blank">Ultrasound Therapy</a> delivers small Ultrasonic waves to the affected part while <a href="https://www.physio-pedia.com/Interferential_Therapy" target="_blank">Interferential Therapy</a> delivers a very small electric current to the affected site. Both these are barely felt and are completely safe. A few days of these two treatments have helped me get rid of these kinds of pain several times. Just make sure you consult an orthopaedic doctor before you get started.</div><div><br /></div><div><b>6. Painkillers and Anti-Inflammatory drugs</b></div><div><b><br /></b></div><div>When anyone has kidney disease, doctors are very wary of prescribing painkillers and anti-inflammatory drugs. However, when someone has zero kidney function, the risk of damaging the kidneys by these two categories of drugs disappears. Obviously, this should not lead to indiscriminate use of these drugs since there are other organs that may be affected. But when there is bad pain, it may be advisable to disregard this caution in the case of dialysis patients, provided they are prescribed by a doctor and vetted by your nephrologist.</div><div><br /></div><div>Common wisdom states that prevention is better than cure. When I was diagnosed with kidney failure in 1997, nobody told me about these things. I ended up with a lot of stiffness all over my body. I am trying hard to correct some of that by exercise and strength training. But a lot of it is irreversible. If you have been recently diagnosed or even a few years down that journey, please use the above advice and prevent yourself from ever getting there. All the best!</div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com4tag:blogger.com,1999:blog-4155770613355202151.post-2784091622537031212023-02-25T17:41:00.005+05:302023-02-25T17:41:59.177+05:30The 4th Indian Dialysis Olympiad is on 5th March in Delhi!Who said dialysis patients cannot play games? <div><br /></div><div>Dialysis patients can do almost everything that otherwise healthy people can! Including participate in sporting competitions.</div><div><br /></div><div>NephroPlus is holding the 4th Indian Dialysis Olympiad where dialysis patients can participate in games like Badminton, Table Tennis, Cricket, Basketball, Cycling etc. and win Gold, Silver and Bronze medals.</div><div><br /></div><div>The event is being held in the Commonwealth Games Stadium in Delhi on Sunday, the 5th of March.</div><div><br /></div><div>Click <a href="https://forms.gle/VWvbeV8tuQk6Zux88" target="_blank">here</a> to register.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXFXaz3N6OVAZJBgmeeGSEkVfs36ZvbeYzCj-o2N4ge4hBEfNLPp7sItOjN83PHJHvZrCF-jMXJQ7wIkD3p1mQDtMaI3muG0zBe855dlwOg6fgaUF7kKPZMpBq14Gf0nfZwCQ_GFfBH1IqoGzfJ8SaeW1Fj20X0QzApnZle-hGb8IghVG0kWeSrdpU/s3582/Event%20creative-01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="3582" data-original-width="2480" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXFXaz3N6OVAZJBgmeeGSEkVfs36ZvbeYzCj-o2N4ge4hBEfNLPp7sItOjN83PHJHvZrCF-jMXJQ7wIkD3p1mQDtMaI3muG0zBe855dlwOg6fgaUF7kKPZMpBq14Gf0nfZwCQ_GFfBH1IqoGzfJ8SaeW1Fj20X0QzApnZle-hGb8IghVG0kWeSrdpU/w443-h640/Event%20creative-01.jpg" width="443" /></a></div><div></div><div><br /></div><div><br /></div><div><br /></div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com0tag:blogger.com,1999:blog-4155770613355202151.post-33754199949692289822023-02-11T16:14:00.004+05:302023-02-11T19:25:52.705+05:30Udaipur DiaryMy grandmother turned <a href="http://www.kamaldshah.com/2023/01/my-grandmother-turns-100.html" target="_blank">100 years old recently</a>. Almost our entire family gathered in Hyderabad to celebrate. My brother, Karan, and his wife, Myra, also came over from the US. So we thought we would do a short family trip to Udaipur. My. brother, Prasan, knew Udaipur fairly well as work took him there often. I was looking forward to the trip as this would be the first trip after my <a href="http://www.kamaldshah.com/2022/11/a-rather-unusual-month.html" target="_blank">Hip Replacement Surgery</a>.<div><br /></div><div><b>Krishna Dal Bati</b></div><div><b><br /></b></div><div>Dal Bati Churma is one of our family's favourite foods. Introduced to this dish by a neighbour about 30 years ago, we have it at least once a month. So, when my brother told us about Krishna Dal Bati in Udaipur, we immediately<span> wanted to go. As soon as we landed in Udaipur and checked into the Trident Hotel, we took a cab and headed out to this place. Like almost all authentic restaurants, Krishna Dal Bati also had pretty pedestrian interiors, purely functional. But the food was another level. Probably the best Dal Bati Churma I have ever had, it was accompanied with Gatte ki subzi, chutney and a dry capsicum-besan curry. A good start to our trip!</span></div><div><span><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG_Y_2MqB8FaLQiH0CbXQHzAzbdGz_iQvpn9KS1kfg3qYcaZpt9a1WQaNEtZMw7Lq6goiij2JfZjK0WcO-NwfTqBXXe8B9MNqb3qXqGq9fa-L_AQPpRdwnONaEA0JsWJb_R2tFgBWxmqloh5nuv3v4UkGnW5dgS13CHeH812CrKyTOXSfgjTDlqfri/s1280/1e5a33b8-8efd-4a1a-9ab1-60eca0d9d858.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG_Y_2MqB8FaLQiH0CbXQHzAzbdGz_iQvpn9KS1kfg3qYcaZpt9a1WQaNEtZMw7Lq6goiij2JfZjK0WcO-NwfTqBXXe8B9MNqb3qXqGq9fa-L_AQPpRdwnONaEA0JsWJb_R2tFgBWxmqloh5nuv3v4UkGnW5dgS13CHeH812CrKyTOXSfgjTDlqfri/s320/1e5a33b8-8efd-4a1a-9ab1-60eca0d9d858.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1wccZYGW1K6f41XK8dfqIgllH5YzCqHorEmORGOUpaJoOysMGobgmcov-ZO-VgG4Lk11oTuL0PkVg51iryjdPPinimDchbcKWtfStFFOw8McwCzhJ6NVdZLpfWyLoECVaAFclFM_vk7Dqi4GCzOeDlDqbhyB88QEk3VfeZzdvU49lR4x5QiiXbLCz/s4032/IMG_2626.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1wccZYGW1K6f41XK8dfqIgllH5YzCqHorEmORGOUpaJoOysMGobgmcov-ZO-VgG4Lk11oTuL0PkVg51iryjdPPinimDchbcKWtfStFFOw8McwCzhJ6NVdZLpfWyLoECVaAFclFM_vk7Dqi4GCzOeDlDqbhyB88QEk3VfeZzdvU49lR4x5QiiXbLCz/s320/IMG_2626.jpeg" width="240" /></a></div><br /><span><br /></span></div><div><span><br /></span></div><div><span><b>Lake Pichola</b></span></div><div><span><b><br /></b></span></div><div>Lake Pichola is the the most popular among the 5 lakes of Udaipur. The lake has the iconic Taj Lake Palace nestled right in the middle and access is only via boat. Many other hotels, including ours, have come up around it. We did a boat ride one evening as the sun was setting with the refrain of mellifluous <i>bhajans</i> from a temple on the shore adding that ethereal touch. Some good restaurants have been setup around the lake which provide for a lovely view while sampling the local Rajasthani cuisine.</div><div><span><br /></span></div><div>We also visited the Sajjangarh Palace one evening which is located almost a kilometre above sea level atop the Bansdara mountain and overlooks Lake Pichola. The palace was used as a summer retreat for the Mewar kings.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFxkvV-hM6CuajYFkuqzkI625iF2LFHFRC-MbKrfDCG7o0YMC4oBXHuMJ01KuaUJMe3HMYUy8isWVE6OxxYsA28BLuecrUyHUwYIVIPNI46M5ThaiqyNbSSvX298G28eKwesbjvxcmCjnoWi7bRKuW1wdMm9SD5tnSsSzsxiaQ7hN4QbIrQJp946qY/s4032/IMG_2635.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFxkvV-hM6CuajYFkuqzkI625iF2LFHFRC-MbKrfDCG7o0YMC4oBXHuMJ01KuaUJMe3HMYUy8isWVE6OxxYsA28BLuecrUyHUwYIVIPNI46M5ThaiqyNbSSvX298G28eKwesbjvxcmCjnoWi7bRKuW1wdMm9SD5tnSsSzsxiaQ7hN4QbIrQJp946qY/s320/IMG_2635.jpeg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Missi Roti, Ker Sangri, Sev Tamatar, Kadhi Pakodi</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEktYoKt8ou18pHFXhcjqm4R5oqVf4gS1Jnbs7JPCmN23qWlDth6nqDIL9qURQq1z2fH4wySoyf4ou1FhW6ickdFPgfJTIkaM_5MU_6KxPMagVWGFh9hdSwLKxQ1XhU8QUEG1nYFwt6xVPYfDkgV9ysBOdzTyJMGljZH2e86jGSmec0TK0w1HD54Ey/s2000/32708AA7-AD4C-4811-B195-E65588E35FCD.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1125" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEktYoKt8ou18pHFXhcjqm4R5oqVf4gS1Jnbs7JPCmN23qWlDth6nqDIL9qURQq1z2fH4wySoyf4ou1FhW6ickdFPgfJTIkaM_5MU_6KxPMagVWGFh9hdSwLKxQ1XhU8QUEG1nYFwt6xVPYfDkgV9ysBOdzTyJMGljZH2e86jGSmec0TK0w1HD54Ey/s320/32708AA7-AD4C-4811-B195-E65588E35FCD.jpg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">Sajjangarh Palace</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDrrRbe6xj1wkqT50pfSp5zwJrm86VDaeAL-jmks_ZDs4ciqHZc85Q7HyPXpa7firlsz1hfIYw0lzBRQBi02uKPjGNzBV5id6fMfipBWGzZGGpRc7yUFjog6n1yf3uA9dZi4M6tZTVh9-ntif-mGc8S7kpWuWk9LGShMSOYjN673ETZDx4qhQAnRnk/s3088/IMG_2639.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDrrRbe6xj1wkqT50pfSp5zwJrm86VDaeAL-jmks_ZDs4ciqHZc85Q7HyPXpa7firlsz1hfIYw0lzBRQBi02uKPjGNzBV5id6fMfipBWGzZGGpRc7yUFjog6n1yf3uA9dZi4M6tZTVh9-ntif-mGc8S7kpWuWk9LGShMSOYjN673ETZDx4qhQAnRnk/s320/IMG_2639.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">View from Sajjangarh Palace</div><br /><div><br /></div><div><br /></div><div><b>Ranakpur Temple</b></div><div><b><br /></b></div><div>On the last day of the trip, we visited the famous Ranakpur Jain Temple, constructed by Dharna Shah, a Jain businessman, about 600 years back. The temple is known for the 1,444 intricately carved pillars, no two of which have the same design! The entire temple has exquisitely carved ceilings and walls with the first Tirthankar, Bhagwan Rishabhdev as its <i>Moolnayak</i> or presiding deity.</div><div><br /></div><div>We did <i>pooja</i> there, had a simple, delicious lunch in the <i>bhojanalay</i> and headed back to Udaipur.</div><div><br /></div><div><b>Afternoon Tea</b></div><div><b><br /></b></div><div>I have been fascinated with the idea of a British Afternoon Tea for a long time now. So, when Karan threw the idea of doing an Afternoon Tea at the neighbouring Hotel Udai Vilas, I jumped at the offer. As it turns out, Karan and Myra love Afternoon Teas as well and they've done quite a few. Udai Vilas serves their Afternoon Tea at the bar and we soon found ourselves in a cosy nook of the bar which had very elegant interiors. </div><div><br /></div><div>There were two options - Indian or Victorian. I picked Victorian while Karan and Myra chose the Indian option. Soon, the tea was served - I had asked for my favourite - Darjeeling Second Flush. It was truly the best I had ever had. I wonder where they sourced the tea from? Accompanying the tea was an elaborate array of savoury and sweet snacks. They had traditional Cucumber Sandwiches, Canapés with a mushroom and ricotta cheese filling, avocado on toast, Cream Puffs, Vanilla Scones and Macarons. All Vegetarian. The food was excellent. We ate so much we had to skip dinner that day.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIsODJYnRJB0sHK-__pruFXZkFziJq2BqWJ6s8HZhxZ21APIIsM6Hqb19w-i70X9cOXu_g1s5Brr7yy4Bkq6FO0UL6XQimHxaI67ubQ9YHUKW1SAgrO1ql84wfXOxK_c7kWzE1PEfYS1X4Op_KDFWQ7MWZA9SELePvQIMl7kaKzIOcoMzcY-81H4Hp/s4032/IMG_2641.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIsODJYnRJB0sHK-__pruFXZkFziJq2BqWJ6s8HZhxZ21APIIsM6Hqb19w-i70X9cOXu_g1s5Brr7yy4Bkq6FO0UL6XQimHxaI67ubQ9YHUKW1SAgrO1ql84wfXOxK_c7kWzE1PEfYS1X4Op_KDFWQ7MWZA9SELePvQIMl7kaKzIOcoMzcY-81H4Hp/s320/IMG_2641.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQTRsHSDjXGBE9XGpBvZpCDOMjou6bY8MMZPt0W1asBSDDR-plDg4-JQqzpti8CeufM4ZxU27-GVbHNkLofDg_2UYRWwN5bx-DSA447xUInYJm7mtAFK5XlT64rilknPc6sv6dpbE0pM6v7iLlaLX7eFkNd-Lm5WlPLRhcjjPfLE8hyhSC2K0BA3A-/s4032/IMG_2642.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQTRsHSDjXGBE9XGpBvZpCDOMjou6bY8MMZPt0W1asBSDDR-plDg4-JQqzpti8CeufM4ZxU27-GVbHNkLofDg_2UYRWwN5bx-DSA447xUInYJm7mtAFK5XlT64rilknPc6sv6dpbE0pM6v7iLlaLX7eFkNd-Lm5WlPLRhcjjPfLE8hyhSC2K0BA3A-/s320/IMG_2642.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVmANcWYvxB45GqOaSqAgVtMaA98mp0_zthBq3UBPJOXD3VBSYdKMubSAQ_cCsnbHaRU9t7xviqVDzu1o6Dw9zrh26vfRL-XQdlBpr5vm8MjF4Z7eG7GWB17cFzymIgLjKqMDiyHqnmbl1GFF7s5LUxEr44w7Ay6Knq7J1ySkAbKf4nJB5ZbEB1zAj/s4032/IMG_2643.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVmANcWYvxB45GqOaSqAgVtMaA98mp0_zthBq3UBPJOXD3VBSYdKMubSAQ_cCsnbHaRU9t7xviqVDzu1o6Dw9zrh26vfRL-XQdlBpr5vm8MjF4Z7eG7GWB17cFzymIgLjKqMDiyHqnmbl1GFF7s5LUxEr44w7Ay6Knq7J1ySkAbKf4nJB5ZbEB1zAj/s320/IMG_2643.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-XajYPjwE8NpSRJRCX-Q5ecmpdG-qOZ9inINWheJ1uqyIpcutxI9CEEhNvo84YGjFL4rLfMU1mMI_q2gmJdlVWoDRkcoHRcsKQxwjszYPbEyD_XI2w9UfiQGd6v4VFrR5PGTnWdu2GeRR5VRorR-uAxCYxa4eDYBQ29pq96huLWpCfhxDg30mkrMf/s4032/IMG_2644.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-XajYPjwE8NpSRJRCX-Q5ecmpdG-qOZ9inINWheJ1uqyIpcutxI9CEEhNvo84YGjFL4rLfMU1mMI_q2gmJdlVWoDRkcoHRcsKQxwjszYPbEyD_XI2w9UfiQGd6v4VFrR5PGTnWdu2GeRR5VRorR-uAxCYxa4eDYBQ29pq96huLWpCfhxDg30mkrMf/s320/IMG_2644.jpeg" width="320" /></a></div><br /><div><br /></div><div><b>Dialysis </b></div><div><b><br /></b></div><div>When I travel for more than one night away from home, my biggest challenge is trying to get nocturnal dialysis - night time dialysis for 7-8 hours. The beauty of nocturnal dialysis is I don't need to restrict my diet and fluid as it is much easier pull them off during a night session and also, my days don't get taken up by dialysis leaving me time to enjoy the place.</div><div><br /></div><div>Luckily, NephroPlus has a centre in Udaipur, in the famous Paras Hospital. The team there including the Operations Manager ,Vishal Shukla and the technicians, Ravi and Devendra really did everything they could to make me comfortable. I did a night session on the second night of three-night my stay there ensuring that I don't go without dialysis for more than one night.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzvGuif6Ugw6njxSyjtTtLbE7R6Y68Rq1mkSH1R3Hpx048KC1S-Yzqz7F85R5FnP8_cYcn34YxvcL7it9_bSRGAqnOmz5fmWfYRbLz2Le9Ynhl5s3PMZLEUK7Ki_Y-iZLDDRk6ofrcJ7a9zpUYBzessMIIYfU9UKPxHm4fZnr0uIPxlC8eaBV9MDIu/s1156/PHOTO-2023-01-19-05-30-16.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1156" data-original-width="867" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzvGuif6Ugw6njxSyjtTtLbE7R6Y68Rq1mkSH1R3Hpx048KC1S-Yzqz7F85R5FnP8_cYcn34YxvcL7it9_bSRGAqnOmz5fmWfYRbLz2Le9Ynhl5s3PMZLEUK7Ki_Y-iZLDDRk6ofrcJ7a9zpUYBzessMIIYfU9UKPxHm4fZnr0uIPxlC8eaBV9MDIu/s320/PHOTO-2023-01-19-05-30-16.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">With the team after my dialysis, early in the morning</div><div><br /></div><div><br /></div><div>This just goes to show that dialysis need not restrict you from traveling for a nice holiday. It gives you a refreshing change from your routine life. I really enjoyed this trip with my family and look forward to more such trips.</div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com4tag:blogger.com,1999:blog-4155770613355202151.post-54740352248027362262023-01-29T09:00:00.001+05:302023-01-29T09:00:00.191+05:30My Grandmother turns 100!<p>I have a question for you. How many poems do you remember that you learnt in school? Not only the names of the poems but the entire poem? I would be surprised if you remembered even one full poem. while we may remember a line here or there, very few of us would remember a whole poem.<br /></p><p>And yet, here is my grandmother, who turned 100 years old on the 12th of January this year and remembers several poems from school despite school for her being more than 80 years ago!</p><p>Born in 1923 in Lahore, her family migrated to India after partition. Schooled in Shimla, she became a doctor. Not many females in those days even studied, let alone go all the way up to Medicine. Marriage brought her to Hyderabad and she practised till she was about 70.</p><p>An extraordinary woman, she played the piano and instilled a love for music in all her children. Blessed with a pure heart devoid of any malice, she was very well read and could hold a conversation about politics and current affairs even till a couple of years ago. She always believed in enjoying life and always encouraged us, her grandchildren to travel and see the world. She herself traveled to many countries with her late husband, my grandfather.</p><p>She called me the "essence of correctness" and would come home every single day to check on my health during the early days of my kidney disease.</p><p>I often wonder how people can live so long. The answer is obvious though. She never used a cell phone, was never on Social Media, rarely ate processed food, ate a diet rich in vegetables and fruits, kept busy, her day offered enough exercise just by doing normal things and she did not need to visit a gym for exercise. Small things brought her happiness. A simple, normal life.</p><p>We overestimate 'the secret of longevity'. We knew it all along. A simple, normal life.</p><p>Here's a picture of my family with her on her hundredth birthday and one with her three daughters and son.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhizaL0cx3cygW5NyEy96c0l8L4sMv5V8Klz0jt89Yayy2ZesLb8Ey-I4hH22d8gpvvbV9RFLqvXcBV2znak5KKHzoAcrOXyeN8HDtHvUe0d60Tieq-QkWZaAJLnB-xD9lk4OG4zHo0Ok_rib6w3ZT5Gnd-AHRYD-jaY1oHRS6uT2bsqUjSjz_kqNVt/s6016/DSC_0591.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4016" data-original-width="6016" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhizaL0cx3cygW5NyEy96c0l8L4sMv5V8Klz0jt89Yayy2ZesLb8Ey-I4hH22d8gpvvbV9RFLqvXcBV2znak5KKHzoAcrOXyeN8HDtHvUe0d60Tieq-QkWZaAJLnB-xD9lk4OG4zHo0Ok_rib6w3ZT5Gnd-AHRYD-jaY1oHRS6uT2bsqUjSjz_kqNVt/w400-h268/DSC_0591.JPG" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-9wciUTxO9bVlfUvWkr0deXilHqZaqyoDrUt_CYi4xSlCtRFWsbP3yZn2qeERk6_UGFMaiegI2kfIr55_wNfYPDuup-9R_cQhApVFWR0O_HtZGRpnc3Sytr0XyrT9XYumqh2opFQ2PFvKMGuJpDIBBXXbhlcDU18lbzDFO1nizV5DiBSODY_94N1_/s6016/DSC_0372.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="6016" data-original-width="4016" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-9wciUTxO9bVlfUvWkr0deXilHqZaqyoDrUt_CYi4xSlCtRFWsbP3yZn2qeERk6_UGFMaiegI2kfIr55_wNfYPDuup-9R_cQhApVFWR0O_HtZGRpnc3Sytr0XyrT9XYumqh2opFQ2PFvKMGuJpDIBBXXbhlcDU18lbzDFO1nizV5DiBSODY_94N1_/w428-h640/DSC_0372.JPG" width="428" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com2tag:blogger.com,1999:blog-4155770613355202151.post-17921855135586951122023-01-26T11:52:00.001+05:302023-01-26T11:53:59.838+05:30The new Supreme Court guidelines on Advance Directives are welcome <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZr37nTvHk3N3iOWmiXFVAG0AcN8UYzXvTbOvlnECOCOMRwGKRbM2rDd8bzKGK2zc1linq6C3pLZzs4TI4c_y9Z3YtaK0wseUrJeCw8jm8FEVX9oP6Iw935Iy3pWvF2eHFiimNkvGNTXsiwWkY1-JSz3sxTdiZJCHrTgcv4ZKnD7Skfqp7rl_ebXL/s300/Supreme_Court_of_India_01.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="187" data-original-width="300" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZr37nTvHk3N3iOWmiXFVAG0AcN8UYzXvTbOvlnECOCOMRwGKRbM2rDd8bzKGK2zc1linq6C3pLZzs4TI4c_y9Z3YtaK0wseUrJeCw8jm8FEVX9oP6Iw935Iy3pWvF2eHFiimNkvGNTXsiwWkY1-JSz3sxTdiZJCHrTgcv4ZKnD7Skfqp7rl_ebXL/s1600/Supreme_Court_of_India_01.jpeg" width="300" /></a></div><br /><p>The Supreme Court of India <a href="https://www.hindustantimes.com/india-news/sc-eases-norms-for-passive-euthanasia-101674585035342.html" target="_blank">revised the guidelines</a> for putting in place an Advance Directive (AD) or a Living Will and executing it. The earlier process was extremely onerous and <b>not a single person could actually get this done</b>. The new process has removed the main impediments and made the process much simpler.</p><p>I had <a href="http://www.kamaldshah.com/2022/08/advance-directives-in-india-are.html" target="_blank">blogged about this</a> just a few weeks back and pointed out how some NGOs were working to get the process simplified through Parliament. Thankfully, the Supreme Court acted and solved some of the problems.</p><p>One of the most important problems with the earlier process was that the AD had to be countersigned by the jurisdictional Judicial Magistrate of First Class (JMFC). What does that even mean? Do you know who the JMFC of your area of residence is? Where do they operate from? How do you reach out to them?</p><p>An AD is usually prepared by someone with a chronic condition who wants a death with dignity whenever the time comes. You think in that situation, they will have the energy and inclination to find out all this?</p><p>Thankfully, the new process only requires that the AD be signed by a Gazetted Officer or a notary. Both of these are much simpler to do.</p><p>The second major problem with the earlier process was that when the time came, before the AD could be acted upon, the process to ascertain the need for such action involved the constitution of two Medical Boards, the second of which was to be done by the District Collector! Then the JMFC had to be looped in. All this involved visits by the Boards and the JMFC to see the patient and there was no outer limit for the process to be concluded. Imagine the agony of the patient and the family.</p><p>The new process, while retaining the requirement<span> of two Boards, has simplified the process by removing the involvement of the Collector, simplifying the constitution of the Boards and adding that the process should ideally be completed in 48 hours (not mandatory though). The last step still involves the JMFC.</span></p><p><span>While there still can be some more tweaks, it is at least a step in the right direction. Any such process needs to balance ease of use with misuse. We must understand that. Hopefully, over the years, some more changes will be made based on the experience accumulated and make the process simple and effective.</span></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com0tag:blogger.com,1999:blog-4155770613355202151.post-18274286765289288022022-12-31T12:22:00.004+05:302022-12-31T12:22:50.060+05:30My Home Hemodialysis in Numbers - 2022<p>I started posting a summary of my <a href="http://www.kamaldshah.com/2021/12/my-home-hemodialysis-in-numbers-2021.html" target="_blank">annual Home HD numbers last year</a>. It was rather well-received. So, here's a snapshot of my Home Hemodialysis in 2022 in numbers. One major difference was that I <a href="http://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">switched in June this year to Daily Nocturnal HDF</a>. I also posted <a href="http://www.kamaldshah.com/2022/07/daily-nocturnal-home-hdf-1-month-update.html" target="_blank">one-month</a>, <a href="http://www.kamaldshah.com/2022/10/daily-nocturnal-home-hdf-three-month-updat.html" target="_blank">three-month</a> and <a href="http://www.kamaldshah.com/2022/12/daily-nocturnal-home-hdf-six-month.html" target="_blank">six-month</a> updates. The best part was that the switch did make a perceptible difference as I described in the six-month update!</p><p>There was also the disastrous fracture I had on Diwali day which necessitated my first hospital admission in more than a decade and half and a <a href="http://www.kamaldshah.com/2022/11/a-rather-unusual-month.html" target="_blank">hip replacement surgery</a>. I also had my <a href="http://www.kamaldshah.com/2022/12/dialysis-patients-how-finger-can-save.html" target="_blank">first major fistula bleed</a> which caused a huge scare.</p><p>Those were the major events of the year. Now onto the numbers:</p><p><b>Number of sessions:</b> 253 (126 HDF, 123 HD, 4 HDF->HD due to RO issues)</p><p><b>Average duration: </b>7.5 hours </p><p><b>Average Weight Gain:</b> 3.2 kgs (Range 1.05 - 5.4 Kg)</p><p><b>Median Weight Gain:</b> 2.8 kgs</p><p><b>Average UF: </b>3.26 l (Range 1.6 - 4.4 l)</p><p><b>Median UF: </b>3.3 l</p><p><b>Average Pre-HD BP:</b> 111/70 mm Hg (Range 87/53 - 135/82)</p><p><b>Average Post-HD BP:</b> 103/64 mm Hg (Range 77/43 - 128/89)</p><p><b>Average RO TDS: </b>3.5 (Range 0 - 17) (Note - I switched to a double pass system when I moved to HDF)</p><p><b>Average Raw Water TDS: </b>252<b> (</b>Range 184 - 374)</p><p>I continue to remain unabashed about my fluid intake. So please reserve comments on that front. Refer to <a href="http://www.kamaldshah.com/2021/12/my-home-hemodialysis-in-numbers-2021.html" target="_blank">the last part of last year's post</a> if you wish to lecture me. My logic is I am going through all the trouble of doing HD / HDF at home. The least I can offer myself is an unfettered fluid and diet intake. :-)</p><p>Hope the coming year brings you uninterrupted bliss!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyabNQX3ncOVeQE2LzPyNPGir3GShvzHENcACKcmDgIc-5U3oxhN-jr45MAAIIE2sSa0o8OAM-xFkRNn6Y_mChAoZ2cyou4DaYQZ79OUoc0XOUKtfs2NELo-e5P3VxquDldnjD9U8bYVrz6ouaQHFBFyoB-yxzODjACmOtTTvySXKlB9FiT7pV6JK6/s1200/96600065.webp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1200" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyabNQX3ncOVeQE2LzPyNPGir3GShvzHENcACKcmDgIc-5U3oxhN-jr45MAAIIE2sSa0o8OAM-xFkRNn6Y_mChAoZ2cyou4DaYQZ79OUoc0XOUKtfs2NELo-e5P3VxquDldnjD9U8bYVrz6ouaQHFBFyoB-yxzODjACmOtTTvySXKlB9FiT7pV6JK6/s320/96600065.webp" width="320" /></a></div><br /><p><br /></p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com4tag:blogger.com,1999:blog-4155770613355202151.post-49472503620922116482022-12-22T06:00:00.002+05:302022-12-22T15:07:46.809+05:30A good oral hygiene routine for Dialysis Patients<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpstx9oJH33UTQjC7PSJJSFfbxP8BAUmrkKsYzJWC1ZGH172rRGst53qgmERFzbT0SzSQyaGVi4A66TbjXZfhaWFo7O9bUAamwngNHQmbPTNy06E-NJS8ZUb8fPE9UnkNqi-evkU_3B1T-nMzzBKdNPoeVfoC4dcFthkRfWLwg1j16m412WUrQW9bR/s1200/06-10-06smile.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="690" data-original-width="1200" height="184" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpstx9oJH33UTQjC7PSJJSFfbxP8BAUmrkKsYzJWC1ZGH172rRGst53qgmERFzbT0SzSQyaGVi4A66TbjXZfhaWFo7O9bUAamwngNHQmbPTNy06E-NJS8ZUb8fPE9UnkNqi-evkU_3B1T-nMzzBKdNPoeVfoC4dcFthkRfWLwg1j16m412WUrQW9bR/s320/06-10-06smile.jpg" width="320" /></a></div><br /><p>Dialysis patients are at an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209615/" target="_blank">increased risk</a> of dental problems. Often, dental problems are neglected unless they become severe. There are some simple things that we can do to prevent these problems from occurring in the first place.</p><p>A good oral hygiene routine is something even the healthy population often lacks. Further, cleaning habits coming down from generations continue unchanged as this area doesn't get much attention. One of the most common misconceptions<span> is regarding when to brush.</span></p><p><span>Here is a simple oral hygiene routine Dialysis Patients can follow to keep their teeth healthy:</span></p><p>1. Perform this routine twice a day, ideally after meals. I do it after breakfast and dinner. </p><p>2. First gargle with water. Then use an interdental brush to remove food stuck between the teeth. After a few years on dialysis, there is bone loss in the teeth as well. This causes gaps between teeth at the base. Food can get stuck here and should be removed. An appropriately sized interdental tooth brush (available at most pharmacies) can be used to easily remove these particles. Make sure you use a small sized one to begin with and then switch to a large sized one if this doesn't work. Using a large sized one right at the beginning may further increase the gap.</p><p>3. After this, use a good Mouthwash such as Listerine to thoroughly rinse your mouth. Spit after at least 30 seconds.</p><p>4. Then squeeze out a pea-sized quantity of toothpaste onto your brush and brush all the teeth. Make sure to brush the front and the back of all teeth and the top parts of the larger teeth as well. Use a down to up or up to down motion as appropriate so that the brush does not damage the gum.</p><p>5. Don't gargle. Just spit. Gargling will undo all the hard work you've just done! This may seem strange at first but try it. You will realise it is fine.<br /></p><p>6. Use a tongue cleaner to clean the tartar that has gathered on the tongue. 2-3 times.</p><p>7. Try not to eat or drink anything for a 10-20 minutes after this routine.</p><p>8. Every morning, as soon as you wake up, you feel like cleaning your mouth. There really is no point going through the whole rigmarole as you have brushed before going to bed and haven't used your teeth the entire night. However, one exception is the tartar on your tongue. So you should gargle with water and use a tongue cleaner to clean out the tartar. 2-3 times. Gargle again. You can then skip this part in your post-breakfast routine.</p><p>As you can see, this is a fairly simple oral hygiene routine that can go a long way in keeping your teeth and mouth healthy and clean. Also, don't miss your annual check up with Dentist to get those cavities filled and the give the teeth a nice cleaning. </p><p>Who wants to deal with yet another problem if you can keep it away?</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com4tag:blogger.com,1999:blog-4155770613355202151.post-35079953074308126822022-12-12T18:00:00.000+05:302022-12-12T18:00:00.689+05:30Daily Nocturnal Home HDF - Six month update<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98S-AyFQz-b1J5AWeXFlq0Lb5gMTUlZ0mqkIzqZbDwe5kpmD6xTkDDFet5NegHxLf4yvTjtmXBILbLPsFaFtryi8xm-2vYMKPPMduim-8_svxxotQrsCZ1l_a1xJwJ3WBFTULms1NP6Ff5lgHkCsAQtJHPu6eYKzM_Ck7hzOtXurqvBcSVDsZw-4Y/s284/download.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="178" data-original-width="284" height="178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98S-AyFQz-b1J5AWeXFlq0Lb5gMTUlZ0mqkIzqZbDwe5kpmD6xTkDDFet5NegHxLf4yvTjtmXBILbLPsFaFtryi8xm-2vYMKPPMduim-8_svxxotQrsCZ1l_a1xJwJ3WBFTULms1NP6Ff5lgHkCsAQtJHPu6eYKzM_Ck7hzOtXurqvBcSVDsZw-4Y/s1600/download.jpeg" width="284" /></a></div><p>I <a href="http://www.kamaldshah.com/2022/06/i-switched-to-daily-nocturnal-home-hdf.html" target="_blank">switched to Daily Nocturnal Home Hemodiafiltration</a> (HDF) in the first week of June this year with a mixture or hope and trepidation. </p><p>Hope because HDF had shown very good results in clearing out middle molecules such as the notorious Beta-2 Microglobulin (Beta-2m) and I was suffering from a very high Beta-2m level which was causing symptoms like pain in my right shoulder while sleeping when it got cold. </p><p>Trepidation because I hadn't come across anyone else undergoing this modality. There were people doing once a week HDF or thrice weekly-four hour HDF. I also came across some literature around short daily HDF and every other day nocturnal HDF. But none around Daily Nocturnal HDF.</p><p>The <a href="http://www.kamaldshah.com/2022/07/daily-nocturnal-home-hdf-1-month-update.html" target="_blank">post-one month results</a> were disappointing, the <a href="http://www.kamaldshah.com/2022/10/daily-nocturnal-home-hdf-three-month-updat.html" target="_blank">post-three month results</a> were promising. </p><p>I completed six months after switching to this modality recently. So, here's an update.</p><p>For those who are regular readers of my blog, you're aware I had a hip fracture in October that necessitated a hip replacement surgery. The surgery has a long recovery but I am feeling much better than a week or two back.</p><p>After 6 months of Daily Nocturnal Home HDF, my Beta-2m is down to 13,822 ng/mL (down from a high of 23,000). This is great news! The fall in the number is also borne out from the fact that I no longer have shoulder pain when it becomes cold at night. And the last month has been unusually cold in Hyderabad. While the normal level is about 2,000, this fall is pretty significant.</p><p>I am pretty thrilled with this right now! Some good news at last.</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com5tag:blogger.com,1999:blog-4155770613355202151.post-79278524724537919842022-12-03T16:23:00.001+05:302022-12-03T16:23:16.238+05:30Dialysis patients: How a finger can save your life when your fistula bleeds<p>I had a scary episode this Wednesday.</p><p>After a fistula infection in July, the infected site had healed but a crust started forming over it making it about a centimeter thick. After my morning shower, that crust fell off resulting in rapid bleeding from the site. Blood was gushing out with such force that within seconds there was blood on the walls and on the floor. As soon as I realised, I used my forefinger and pressed hard at the site.</p><p>I quickly reached out to my family who rushed me to the nearby hospital. All this while, I did not release my finger. I did not peek to check if the bleeding had stooped either. At the hospital, they checked the site and found that the bleeding had stopped. I was relieved.</p><p>During a time of emergency like this, people often flounder and do things they are not supposed to do and in fact, make things worse. </p><p>Remember, in case you are in a similar situation, when a site from your fistula starts gushing blood, do the following:</p><p>1. Use your forefinger to apply direct pressure on the bleeding site. Do not search for sterile gauze etc. The chance that you get infected due to this is low and even if you do, it can be treated. However, if you delay in applying pressure, the blood loss may be too great to ever recover from.</p><p>2. Apply this pressure for a minimum of 10 minutes without lifting the finger.</p><p>3. Try to keep your arm above the level of the heart. Have someone help to hold it, if needed.</p><p>4. Go to a hospital where they have a dialysis or nephrology department for further examination and action.</p><p>Some people recommend an inverted bottle cap. However, the trouble with this is finding a bottle cap when the event happens. That is why, I prefer using the finger. It is always with you!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosHj-BeVXsPh9ybhHz5FsqDPDGlKRLDv7oXLJXLaEFsLar2-IDG4WUPF0rihfYIor6QbbqnR01hRg6BjdFgxUk9ykE6LqXDmDwQYyfP_-sC2JnEF5ziOSKoFdRnqJD42glJYN1D-PUjYq8XxvvWDxFpba-EICi9b17SAYs-0Y6IkRG0PwJIncLRZ3/s1280/maxresdefault.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosHj-BeVXsPh9ybhHz5FsqDPDGlKRLDv7oXLJXLaEFsLar2-IDG4WUPF0rihfYIor6QbbqnR01hRg6BjdFgxUk9ykE6LqXDmDwQYyfP_-sC2JnEF5ziOSKoFdRnqJD42glJYN1D-PUjYq8XxvvWDxFpba-EICi9b17SAYs-0Y6IkRG0PwJIncLRZ3/s320/maxresdefault.jpeg" width="320" /></a></div><p><b>Remember - apply direct pressure with your finger, raise above the heart, hold for 10 minutes.</b></p><p>Please share this tip with all dialysis patients you know. It could save their life.</p>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com3tag:blogger.com,1999:blog-4155770613355202151.post-47941590887434747852022-11-26T16:05:00.002+05:302022-11-26T16:05:37.060+05:30A rather unusual month<div>A typical month from my life looks like this:</div><div><ul style="text-align: left;"><li>Work full time</li><li>Swimming</li><li>Strength Training</li><li>~20 nights of dialysis without any complications</li><li>No EPO / Iron (as my Hemoglobin was normal)</li><li>No nights spent in a hospital</li><li>No surgeries</li><li>No pain</li><li>Good sleep</li><li>Movies</li><li>Eating out</li><li>etc etc etc</li></ul><div>This last month has been quite the opposite:</div></div><div><ul style="text-align: left;"><li>Lot of time off from work, work part-time rest of the days</li><li>No swimming / walking</li><li>Physical Therapy to build strength</li><li>Less than 20 nights on dialysis, some with several complications</li><li>Lot of EPO / Iron as my Hemoglobin has plummeted </li><li>5 nights spent in the hospital</li><li>One major surgery - a complete hip replacement</li><li>Lot of pain</li><li>Very poor sleep</li><li>Low grade fever on most days</li><li>Shortness of breath</li><li>etc etc etc</li></ul><div>The hip replacement was necessitated after a hip fracture I had on Diwali day after tripping, with my left leg (<a href="http://www.kamaldshah.com/2022/09/ckd-mbd-bones-bane.html" target="_blank">which was already in trouble</a>) bearing the brunt of the entire body weight and breaking as a result.</div></div><div><br /></div><div>To make things worse, the head of the team of surgeons who operated upon me called me a few days after the surgery and told me that they had mistakenly used a wrong sized part during the surgery. Instead of using a 36 mm diameter liner, they used a 32 mm diameter liner. The medical consensus seems to be to perform corrective surgery to replace the wrong-sized liner.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYNZ_-0aukuV71vdh3ws-_DJtEXhgyyMtDJ87uffCm7y15gxRalfYvLZlFwVDYnvrH1MK00M8ghDmiB5OHBd4zHr5XjSIslQ_mlXENVAjKS7WH5YsstluFVJ-rjlrEQNacGxo2xFBlbn4ATzI1QSXTe5A7fipuxZgXhv23TqR09yXDj2TyPWSlsF_V/s2390/IMG_2561%20copy.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2390" data-original-width="2382" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYNZ_-0aukuV71vdh3ws-_DJtEXhgyyMtDJ87uffCm7y15gxRalfYvLZlFwVDYnvrH1MK00M8ghDmiB5OHBd4zHr5XjSIslQ_mlXENVAjKS7WH5YsstluFVJ-rjlrEQNacGxo2xFBlbn4ATzI1QSXTe5A7fipuxZgXhv23TqR09yXDj2TyPWSlsF_V/s320/IMG_2561%20copy.jpeg" width="319" /></a></div><div><br /></div><div>For now I don't even want to think of the corrective surgery until I have recovered completely from the first surgery!</div><div><br /></div><div>The last month has been very challenging. Trouble is I am used to a normal life. Daily Nocturnal Home HD does that to you. Spoils you. When you have a setback such as this one, you can find it difficult to cope.</div><div><br /></div><div>I have dabbled with switching to Conservative Care multiple times in the past few weeks. The low hemoglobin and fever pull you down so much, you don't feel like doing anything.</div><div><br /></div><div>Right now, I am just hoping for a turnaround that seems to be evading me.</div><div><br /></div>Kamal D Shahhttp://www.blogger.com/profile/10671037449347982821noreply@blogger.com14