Saturday, January 23, 2021

डायलिसिस पर एवी फिस्टुला: आसानी से हार न मानें


 हेमोडायलिसिस में प्रवेश के लिए एक आर्टेरियोवेनस फिस्टुला (एवीएफ) स्वर्णमान है। हेमोडायलिसिस के लिए अच्छे प्रवाह दर को सक्षम करने के लिए एक सर्जन या एक डॉक्टर त्वचा के नीचे की नस पर एक छोटी सर्जरी से को रक्त के दबाव में सुधार करेगा। वरीयता के घटते क्रम में अन्य प्रकार के हेमोडायलिसिस अभिगम एक आर्टेरियोवेनस ग्राफ्ट (एवीजी), एक टनल्ड कैथेटर और एक गैर-टनल्ड कैथेटर हैं। अंतिम दो को क्रमशः स्थायी कैथेटर और अस्थायी कैथेटर भी कहा जाता है।  

एक एवीएफ का लाभ यह है कि यह पूरी तरह से शरीर के अंदर होता है जिसमें कोई भी उजागर भाग नहीं होता है, जिससे संक्रमण का जोखिम बहुत हो जाता है। यही कारण है कि नैदानिक ​​रूप से एवीएफ हेमोडायलिसिस के लिए सबसे अच्छा प्रकार है। कई रोगियों में एवीएफ होता है जो दशकों तक बिना किसी समस्या के रहता है।

 

एवीएफ कुछ रोगियों में समय-समय पर कुछ समस्याएं देते हैं। ये खराब प्रवाह से लेकर, नस में रुकावट और संक्रमण आदि के कारण हो सकते हैं। कुछ लोगों के बीच एक समस्याग्रस्त प्रवृत्ति है - एवीएफ को छोड़ने और एक नया निर्माण करने की। विशेषज्ञों के अनुसार यह सही दृष्टिकोण नहीं है।

 

मानव शरीर में केवल कुछ साइटें हैं जहां एक एवीएफ का निर्माण किया जा सकता है। इनमें से भी, रोगी के दृष्टिकोण से केवल चार सबसे आरामदायक और सुविधाजनक हैं। इसके अलावा, एक बार एक एवीएफ साइट को छोड़ दिया गया जाए तो फिर एक और एवीएफ बनाने के लिए इसे फिर से उपयोग करना असंभव है। तो, आपके पास सुविधाजनक एवीएफ के केवल चार प्रयास हैं।

 

इसलिए उनका इस्तेमाल विवेकपूर्ण तरीके से करें।

 

यदि एवीएफ कोई समस्या देता है तो किसी को क्या करना चाहिए? इसे ठीक करने के लिए आप जो कुछ भी कर सकते हैं, करें। अपने नेफ्रोलॉजिस्ट से बात करें। अपने शहर के सबसे अच्छे वैस्कुलर सर्जन के पास जाएं। उन्हें इसकी जांच करने और इसे सुधारने की पूरी कोशिश करने के लिए कहें। आसानी से हार न मानें।

 

कई चीजें हैं जो एक एवीएफ की मरम्मत के लिए की जा सकती हैं। एक वेनोग्राम उन्हें बताएगा कि क्या गलत है। एक फिस्टुलोप्लास्टी (एवीएफ से जुड़े नस का एक बैलून एंजियोप्लास्टी) अवरोधों को खोल देगा। एक स्टेंट अधिक लंबे समय तक नस में अवरोधों को खोल सकता है। ये सभी प्रक्रियाएं शरीर की प्लंबिंग के लिए रखरखाव की तरह हैं। हम उनके बिना नहीं रह सकते और अगर हम उन्हें अनदेखा करते हैं, तो वे अधिक गंभीर समस्याएं पैदा कर सकते हैं।

 

इनमें से कुछ प्रक्रियाएं महंगी हैं। हालांकि, लंबे समय में, यह एक निवेश के लायक होगा।

 

इसलिए, कृपया अपने एवीएफ के साथ किसी समस्या के थोड़े से संकेत पर उसे छोड़ न दे। इसकी मरम्मत और पुनरुद्धार के लिए आप जो कुछ कर सकते हैं वो सभी करे। याद रखें, आपके पास एवीएफ के साथ सीमित विकल्प हैं।

 

AV Fistula on Dialysis: Don't give up too easily


An Arteriovenous Fistula (AVF) is the Gold Standard for accesses in Hemodialysis. A surgeon or a doctor will connect an artery and a vein underneath the skin to improve the pressure of the blood in the vein to enable good flow rates for hemodialysis. Other types of hemodialysis accesses in decreasing order of preference are an Arteriovenous Graft (AVG), a Tunnelled Catheter, and a Non-Tunnelled Catheter. The last two are also called Permanent Catheter and Temporary Catheter, respectively. 
The advantage of an AVF is that it is completely inside the body with no exposed portion, reducing the risk of an access infection dramatically. That is why clinically AVFs are the best type of access for hemodialysis. Many patients have AVFs that last for decades with no problems.

AVFs give some problems from time to time in some patients. These could range from poor flow, obstruction in the vein and infections, etc. There is a worrying trend among some people to abandon a problematic AVF and construct a new one. This is not the right approach as per experts.

The human body has only a few sites where an AVF can be constructed. Of these also, only four are most comfortable and convenient from the patient's perspective. Also, once an AVF site has been abandoned, it is impossible to use it again to create another AVF. So, you have only four attempts at convenient AVFs.

So use them judiciously.

What then should one do if an AVF gives a problem? Do everything you can to repair it. Talk to your nephrologist. Go to the best vascular surgeon in your city. Ask them to examine it and try their best to repair it. Do not give up easily.

There are several things that can be done to repair an AVF. A venogram will tell them what is wrong. A fistuloplasty (a balloon angioplasty of the vein connected to an AVF) will open up obstructions. A stent can open up obstructions in the vein more long-term. All these procedures are like maintenance for the plumbing of the body. We cannot do without them, and if we ignore them, they can lead to more severe problems.

Some of these procedures are expensive. However, in the long run, this would be an investment worth making.

So, please don't give up at the slightest hint of a problem with your AVF. Do all you can to repair and revive it. Remember, you have limited options with AVFs.

Saturday, January 16, 2021

डायलिसिस पर, प्रोटीन का सेवन अधिक होना चाहिए, कम नहीं


मुझे जुलाई 1997 में अचानक किडनी की बीमारी हो गई। डॉक्टरों ने सोचा कि यह एक्यूट किडनी इंजरी है, जो कुछ ही दिनों में सुलझ जाएगी। हालांकि, अधिकांश डायलिसिस के रोगियों को क्रोनिक किडनी रोग है, इसलिए उनका गुर्दा समारोह धीरे-धीरे बिगड़ता है। अधिकांश लोगों को एहसास होता है कि उनके साथ कुछ गलत है, केवल तब जब काफी नुकसान हो चुका हो।

डॉक्टर गुर्दे की बीमारी के प्रारंभिक चरण में अधिकांश रोगियों के लिए कम-प्रोटीन आहार की सलाह देते हैं। ऐसा इसलिए होता है क्योंकि किडनी शरीर से अतिरिक्त प्रोटीन को हटा देती है और अगर मरीज ज्यादा प्रोटीन खाता है तो गुर्दों को ज्यादा मेहनत करनी पड़ती है।


जब मरीज गुर्दे की बीमारी के अंतिम चरण में पहुंचता है और डायलिसिस से गुजरना पड़ता है, तो प्रोटीन के विषय में उलटा अचानक सच हो जाता है। डायलिसिस के मरीजों को प्रोटीन की बहुत ज़्यादा जरूरत होती है। डायलिसिस की प्रक्रिया शरीर से प्रोटीन को तेजी से निकालता है। शरीर को अब प्रोटीन प्रतिबंध के बजाय प्रोटीन पूरकता की आवश्यकता है।


दुर्भाग्य से, कुछ डॉक्टर और आहार विशेषज्ञ अपने रोगियों के साथ आहार पर चर्चा करते समय इस महत्वपूर्ण बात को भूल जाते हैं। नतीजतन, कुछ रोगी अपने भोजन में प्रोटीन को प्रतिबंधित करना जारी रखते हैं, जिसके परिणामस्वरूप गंभीर कुपोषण और अन्य संबद्ध समस्याएं होती हैं।


यह समस्या पेरिटोनियल डायलिसिस के साथ और भी बड़ी है जहाँ प्रोटीन का निष्कासन और भी अधिक होता है और प्रोटीन सप्लीमेंटेशन मरीज के आहार का महत्वपूर्ण हिस्सा बन जाता है।


अधिकांश डायलिसिस रोगियों को लगभग 1.2 ग्राम / किलोग्राम शरीर के वजन / दिन की आवश्यकता होती है। लेकिन आपके नेफ्रोलॉजिस्ट या डायटीशियन आमतौर पर इसे लिखेंगे। 


इस गणना के अनुसार आपके शरीर के वजन के लिए आवश्यक प्रोटीन की मात्रा को समझने के लिए नीचे दी गई तालिका देखें:


शरीर का वजन

प्रति दिन प्रोटीन की आवश्यकता

80 किग्रा

96 ग्राम

70 किग्रा

84 ग्राम

60 किग्रा

72 ग्राम

50 किग्रा

60 ग्राम


इसका क्या अर्थ है इसका अंदाजा लगाने के लिए, निम्न तालिका देखें जिसमें कुछ सामान्य रूप से सेवन किए गए शाकाहारी खाद्य पदार्थों की प्रोटीन सामग्री है:


वस्तु के 100 ग्राम

प्रोटीन की मात्रा

पकाया हुआ तूर दाल

7 ग्राम

पनीर

14 ग्राम

पके हुए सोयाबीन

17 ग्राम


इस लिंक में कई अन्य खाद्य पदार्थों और उनकी प्रोटीन सामग्री की तालिका है। और इस लिंक में भी  

 

तो, एक दिन में 84 ग्राम प्रोटीन खाना काफी मुश्किल है। लेकिन खाना तो है ही। कई रोगी विशेष रूप से डायलिसिस रोगियों के लिए डिज़ाइन किए गए प्रोटीन सप्लीमेंट का उपयोग करते हैं  यह प्रति दिन प्रोटीन का सेवन बढ़ाने में भी मदद करता है। 

 

एक बात देखने वाली है कि कई प्रोटीन युक्त खाद्य पदार्थ फास्फोरस से भी भरपूर होते हैं। तो कृपया सुनिश्चित करें कि आप अपने फॉस्फेट बाइंडर्स को अपने नेफ्रोलॉजिस्ट द्वारा बताए गए मात्रा में निर्धारित अनुसार लें।


हम जो कुछ भी करते हैं, हमें यह सुनिश्चित करने की आवश्यकता है कि हमारे प्रोटीन का सेवन अच्छा हो। हर भोजन के साथ कुछ प्रोटीन लें। एक भी भोजन प्रोटीन के बिना न करें। यदि हम ऐसा नहीं करते हैं, तो मांसपेशियों के कमजोर होने और विभिन्न प्रकार की शारीरिक अक्षमताओं जैसे चलने, सीढ़ियां चढ़ने, बैठने और कुर्सी से बाहर निकलने आदि में बहुत अधिक मुश्किल होता है। सरकोपेनिया नामक एक स्थिति भी संभव है जहां हाथ और पैर बहुत पतले हो जाते हैं लेकिन पेट फूल जाता है।   

 

तो, कृपया इसे बहुत गंभीरता से लें और मूल्यांकन करें कि आपको प्रति दिन कितना प्रोटीन मिल रहा है और अपने शरीर के वजन के अनुसार निर्धारित मात्रा तक पहुंचने का प्रयास करें।

On dialysis, protein intake needs to be high, not low


I was diagnosed with Kidney Disease suddenly in July 1997. The doctors thought it was Acute Kidney Injury, which would resolve in a few days. Most dialysis patients, however, have Chronic Kidney Disease, so their kidney function deteriorates gradually. Most people realise something is wrong with them only when considerable damage has already been done.

Doctors recommend a low-protein diet for most patients in the early stages of kidney disease. This is because kidneys remove excess protein from the body and have to work harder if the patient eats more protein.

When the patient reaches the last stage of kidney disease (not life, mind you) and has to undergo dialysis, the reverse suddenly becomes true. Dialysis patients need a lot of protein. Dialysis removes protein from the body rapidly. The body now requires protein supplementation rather than protein restriction.

Unfortunately, some doctors and dieticians miss this important point while discussing diet with their patients. As a result, some patients continue to restrict proteins in their food, resulting in severe malnourishment and other associated problems.

This problem is even bigger with Peritoneal Dialysis where the protein removal is even greater and protein supplementation becomes a critical part of the patient's diet.

Most dialysis patients need around 1.2 g/kg body weight/day. But your nephrologist or dietician will typically prescribe this. 

See the table below to understand the amount of protein required for your body weight as per this calculation:

Body weightProtein required per day
80 kg96 g
70 kg84 g
60 kg72 g
50 kg60 g

To get an idea of what that means, see the following table that has the protein content of some commonly consumed vegetarian foods:

100 g of itemProtein content
Cooked Toor dal7 g
Paneer14 g
Cooked Soya beans17 g

This link has a table of several other foods and their protein content. So does this link.

So, it is quite difficult to eat 84 g of protein in a day. But eat, we must. Many patients use protein supplements specially designed for dialysis patients. This also helps in augmenting the protein intake per day.

One thing to watch out for is that many protein-rich foods are rich in phosphorus as well. So please ensure that you take your phosphate binders as prescribed by your nephrologist.

Whatever we do, we need to ensure that our protein intake is good. Have some protein with every meal. Do not miss protein in a single meal. If we don't do that, there is a high risk of muscle wasting and various types of physical disabilities like difficulty in walking, climbing stairs, sitting in and getting out of a chair and so on. A condition called Sarcopenia is also possible where the hands and legs become very thin but the stomach bloats up. 

So, please take this very seriously and evaluate how much protein you are getting per day and try to reach the prescribed amount as per your body weight.

Saturday, January 9, 2021

मुश्किल समस्याओं का निदान करना: आपको अपने सामान्य चिकित्सक के संपर्क में क्यों रहना चाहिए


 कुछ साल पहले की बात है। मुझे एक अस्पष्टीकृत बुखार था। मैंने अपने नेफ्रोलॉजिस्ट के साथ चर्चा की और हमनें  डायलिसिस से संबंधित सभी संभावनाओं के बारे में सोचा लेकिन यह निष्कर्ष नहीं निकाल सके कि इसका कारण क्या हो सकता है। फिर उन्होंने सुझाव दिया कि मैं एक सामान्य चिकित्सक (जनरल प्रैक्टिशनर, GP) को देखूँ। सलाह ने मुझे चौंका दिया। वह, एक नेफ्रोलॉजिस्ट, मुझे एक जीपी के पास क्यों भेजेंगे? आखिरकार, पहले के जैसा नहीं रहा की आप GP को ही देखते, कोई भी बीमारी हो। ये विशेषज्ञ और सुपर-विशेषज्ञ के दिन थे।

मै गलत था।

कई चीजें हैं जो एक GP कर सकते है जो कोई विशेषज्ञ नहीं कर सकते। विभिन्न स्थितियों में विस्तृत अंतर्दृष्टि उनके पास एक ऐसी हाई कला है। वे किसी एक विषय को भले ही बहुत गहराई से नहीं जानते, लेकिन वे विभिन्न विषयों के बारे में पर्याप्त रूप से जानते हैं। प्रारंभिक निदान में GP उत्कृष्ट माने जाते हैं।


खैर, इन दिनों विशेषज्ञ यह भी जानते हैं कि अधिकांश सामान्य परिस्थितियों से कैसे निपटना है। खासतौर पर क्रॉनिक किडनी डिजीज जैसी स्थितियों में, जहां मरीज कई वर्षों में अपने डॉक्टरों से सलाह लेते हैं, विशेषज्ञ भी नियमित परिस्थितियों के इलाज में माहिर हो जाते हैं।


हालांकि, अभी भी कुछ मुश्किल समस्याएं हैं जहां वे एक GP के अनुभव को महत्ता देते हैं।

 

उदाहरण के लिए, मेरा बुखार ही ले लो।


मेरे नेफ्रोलॉजिस्ट ने मुझे GP के पास भेजा। अस्पष्टीकृत बुख़ार के लिए, उनके पास एक स्थापित प्रोटोकॉल है। वे एक के बाद एक जाँच करवाते हैं जब तक वे कोई निदान पर नहीं आते। 


मेरे मामले में भी यही हुआ। हमने अंत में बुखार के कारण को खोज निकाला। GP ने मुझे इसके लिए उपचार दिया और मैं कुछ दिनों में ठीक हो गया।


इसलिए, जबकि डायलिसिस के रोगी सब समस्याओं के लिए नेफ्रोलॉजिस्ट पर भरोसा करते हैं, ऐसी समस्याओं के लिए अपने GP के संपर्क में रहना लाभदायक हो सकता है।

 

Diagnosing the tricky stuff: why you should stay in touch with your GP

This happened a few years ago. I had an unexplained fever. I discussed with my nephrologist and we went over all the possibilities related to dialysis but could not conclude what the cause might be. He then suggested that I saw a General Practitioner (GP). The advice startled me at first. Why would he, a nephrologist, send me to a GP? After all, we were well past the days where a GP was all you saw when you were sick. These were the days of specialists and super-specialists.

I was mistaken.

There are many things that a GP does which no specialist can do. The wide insight into a variety of conditions is one of the best gifts they have. They may not know any one subject very deeply, but they know enough about a variety of subjects to figure out what is wrong. GPs are excellent at initial diagnosis.

Well, specialists these days also know how to deal with most common conditions. Especially in conditions like Chronic Kidney Disease, where patients consult their doctors over several years, specialists also become adept at treating regular conditions.

However, there are still some tricky problems where they defer to the experience of a GP. 

Take my fever, for example.

My nephrologist asked me to see the GP. I went and met my Family Physician. For Unexplained Fevers, they have an established protocol. They first test check for X and then for Y and so on until they arrive at a diagnosis. 

That's what happened in my case as well. We went down that checklist and finally zeroed in on the cause of the fever. The GP gave me the treatment for it and I was fine in a few days.

So, while dialysis patients rely on nephrologists for everything, it might be a good idea to stay in touch with their GP for such problems.

Saturday, January 2, 2021

The beauty of self-cannulation

Those on hemodialysis, I have a simple question for you. Who is the one person who is always present when you are getting dialysis? Whether you are at your regular centre or traveling and getting dialysis in a new centre. Whether the expert cannulator at your centre has come or not. Whatever be the circumstances. Who is the one person who is always present when you get dialysis?

It is you!

For most hemodialysis patients, the most fearful aspect of dialysis is cannulation. The insertion of two thick needles in the arm can never be fun. Most people are paranoid about these needles. Some people settle with one technician who has figured the fistula out and the associated veins and knows how to cannulate it. Patients always want only that person to do the cannulation. When that person is away on leave or assigned to another shift, then patients panic. 

I have been through this myself. When I was getting dialysis in a hospital, there was one technician, Jairam, who cannulated me with no problem. I used to always want only him to cannulate. If he was on leave, I would reschedule my dialysis session, so I got dialysis when he was available. 

I read about self-cannulation online. I had become a member of the Home Dialysis Central group and they had an online forum where people could post questions. Those who had experienced those problems in the past would help with suggestions on how they solved the problem. There, I learnt that you could cannulate yourself and not rely on technicians any more. Wherever you went, you would not have to worry about the ability of the technicians.

I started learning the process from Jairam himself. Jairam explained it to me and stood by as I cannulated for the first time. At the end, I was proud of myself. It gave me confidence that I never had in the past. In the next few sessions, I continued cannulating myself and soon was doing it with no fear.


I do not remember a single session where someone else has cannulated me after that.

Self-cannulation liberates you from the fear of the availability of good technicians. You are taking care of the most fearsome part of the session. What else can go wrong? 

Dialysis centre staff also see those who self-cannulate with respect. They allow them to decide other dialysis parameters as well.

Very few things you do related to your dialysis will give you the amount of satisfaction and confidence that self-cannulation does. So, talk to your nephrologist and dialysis centre staff and see if you can give it a shot. It will be worth it.

Here are two videos of me cannulating myself. One is at my home and one is on a holiday to Goa.


हेमोडायलिसिस पर सेल्फ-कैन्युलेशन की महत्ता

जो लोग हेमोडायलिसिस पर हैं, मेरे पास आपके लिए एक सरल प्रश्न है। वह कौन व्यक्ति है जो डायलिसिस करवाते समय हमेशा मौजूद रहता है? चाहे आप अपने नियमित केंद्र पर हों या किसी नए केंद्र में यात्रा के दौरान डायलिसिस करवा रहे हों। चाहे आपके केंद्र का विशेषज्ञ कैनुलेटर आया हो या नहीं। परिस्थितियां कैसी भी हों। वह कौन व्यक्ति है जो डायलिसिस कराने पर हमेशा मौजूद रहता है?

आप ही हैं!

अधिकांश हेमोडायलिसिस रोगियों के लिए, डायलिसिस का सबसे डराने वाला पहलू कैनुलेशन है। बांह में दो मोटी सुइयों का लगाना कभी भी मज़ेदार नहीं हो सकता है। ज्यादातर लोग इन सुइयों से बड़े परेशान रहते हैं। कुछ लोग एक तकनीशियन के साथ जुड़ जाते हैं, जिन्होंने फिस्टुला और उससे जुड़ी नसों का पता लगाया है और जानते हैं कि इसे कैसे करना है। वो हमेशा सिर्फ़ वही  तकनीशियन कैनुलेशन करे। जब वह तकनीशियन छुट्टी पर होता है या दूसरी पाली में सौंपा जाता है, तो मरीज घबरा जाते हैं।

मैं खुद इस सब से गुजर चुका हूँ। जब मैं एक अस्पताल में डायलिसिस करवा रहा था, तब एक तकनीशियन, जयराम थे, जिन्होंने मुझे कोई समस्या नहीं होने दी। मैं हमेशा उससे ही कैन्युलेट करवाना चाहता था। यदि वह छुट्टी पर था, तो मैं अपना डायलिसिस सत्र बदल लेता था जिससे जब वह उपलब्ध था, तो मुझे डायलिसिस मिले।

मैंने ऑनलाइन सेल्फ-कैन्युलेशन के बारे में पढ़ा। मैं होम डायलिसिस सेंट्रल ग्रुप का सदस्य बन गया था और उनके पास एक ऑनलाइन फ़ोरम था, जहाँ लोग सवाल पोस्ट कर सकते थे। जिन लोगों ने अतीत में उन समस्याओं का अनुभव किया था, वे सुझाव के साथ मदद करते कि उन्होंने समस्या को कैसे हल किया। वहाँ, मुझे पता चला कि आप अपने आप कैनुलेशन कर सकते हैं और किसी भी तकनीशियनों पर निर्भर नही रहना पड़ेगा। आप जहां भी गए, आपको तकनीशियनों की क्षमता के बारे में चिंता करने की ज़रूरत नहीं होगी।

मैंने खुद जयराम से प्रक्रिया सीखना शुरू किया। जयराम ने मुझे समझाया और जब मैंने पहली बार किया तो वह वही खड़ा था। कैनुलेशन बराबर हो गया। मुझे खुद पर गर्व हुआ। अगले कुछ सत्रों में, मैंने अपने आप कैनुलेशन करना जारी रखा और जल्द ही यह बिना किसी भय के कर रहा था।

मुझे एक भी सत्र याद नहीं है, जहां किसी और ने उसके बाद मुझे कैनुलेशन किया हो।

सेल्फ-कैन्युलेशन आपको अच्छे तकनीशियनों की उपलब्धता के डर से मुक्त करता है। आप सत्र के सबसे डरावने हिस्से की देखभाल कर रहे हैं। और क्या गलत हो सकता है?

डायलिसिस सेंटर के कर्मचारी उन लोगों को बड़े आदर पूर्वक देखते हैं जो सेल्फ-कैन्युलेशन करते हैं। वे उन्हें अन्य डायलिसिस मापदंडों को भी तय करने की अनुमति देते हैं।

आपके डायलिसिस से संबंधित बहुत कम चीजें आपको संतुष्टि और आत्मविश्वास की मात्रा प्रदान करेंगी जो कि सेल्फ-कैन्युलेशन करता है। इसलिए, अपने नेफ्रोलॉजिस्ट और डायलिसिस सेंटर के कर्मचारियों से बात करें और देखें कि क्या आप यह कर सकते हैं या नहीं।

यहाँ मेरे द्वारा खुद को सेल्फ-कैन्युलेशन के दो वीडियो हैं। एक मेरे घर पर है और एक गोवा की छुट्टी पर है।






Saturday, December 26, 2020

In search of the perfect Adadiya

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

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

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

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

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

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

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

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

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


Thursday, December 17, 2020

Those on Peritoneal Dialysis, beware of laxity due to fatigue


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

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

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

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

First, I will recount a personal experience. 

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

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

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

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

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

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

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

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

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

Saturday, November 21, 2020

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

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

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

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

That's where the similarities end though.

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

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

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

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



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



Saturday, September 26, 2020

Reflections on aHUS Awareness Day

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

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

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

I was only partially correct.

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

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

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

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

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

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

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

Wednesday, September 2, 2020

The Secret Recipe to make the Best Idlis ever

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

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

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

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

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

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

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

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

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

Here's the full recipe:

Ingredients:

1 cup whole urad dal

2.5 cups Idli rice

1 tablespoon methi seeds

1/2 cup poha

Salt to taste

Method:

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

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

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

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

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

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

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