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Sunday, 04 March 2012 20:44

Coronary Artery Disease - the silent killer

Written by Kamal Shah
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A very dear friend's father passed away last week. The reason: Coronary Artery Disease (CAD). Indians have a genetic predisposition to CAD. Thousands of years back, there was severe famine in this area. This resulted in the body adapting to the situation as it always does and over the years started storing fat within the body rather than allowing it to burn. This tendency has caused many people in this region to have CAD.

The recent trends of leading sedentary lifestyles, sitting all day in front of a computer, not having time to cook healthy, nutritious food and as a result relying on processed, junk food multiplies the risk manyfold. 

The time to act is now. Everyone is at risk. Some more than others. The best part - we can do something about it! And we must start NOW! Tomorrow is too late.

You really need not look anywhere for magic solutions. It is all very simple. Something we have heard hundreds of times. Exercise and eat healthy. Stay away from alcohol and smoking. Tension nahin lene ka. Get enough sleep. Etc. Etc. Nothing new at all. The trick, however, is to find innovative ways to do this. All of us procrastinate on these things. Exercise? "I will start from the 1st." Giving up fried food? "After my cousin's wedding."

On exercise and fried food, a great motivator is to stand nude in front of a mirror. Most of us will need no greater motivation! On stress at work, remember one thing - most of us are working to earn money so that we can lead comfortable lives or to achieve something. By getting stressed about the work, we are putting our health so much at risk that we may not be around to enjoy what we have worked for! Isn't this the supreme irony of our lives?!

The frightening part of this is that these days age is not a factor. People in their twenties are also at risk. So, stop thinking that you don't have to worry. 

As I said earlier, we must start NOW. Tomorrow is too late!

... http://www.kamaldshah.com/2012/03/coronary-artery-disease-silent-killer.html


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Saturday, 03 March 2012 01:57

Dialysis: HDF Feedback and a War(farin) story

Written by Greg Collette
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There is news on the HDF front.  As I described in my last post, I started HDF instead of plain old bog-standard haemodialysis about two weeks ago.  For a while I felt fine, but after a week or so, I started to feel tired, nauseous and generally unwell, almost like I wasn’t getting enough dialysis.  I even had a sleep in the middle of the day, which I almost never do.  I mentioned this to Chris, my unit manager.  Initially she thought I had caught a bug.  We BigD club members are often on the edge of good health, and it takes very little for us to slip over.

However, the following day she came back and told me that Don, another new-to-HDF patient was also feeling unwell.  He arrived late for dialysis because he was exhausted and had slept in., something he had not done before.  That news was enough for me.  I decided to go back to haemo and to wait and watch.

After some discussion between nephrologists, the problem seems to be our routine.  Don and I have short, frequent dialysis – five times a week, for 3 hours per time.  (Apart from feeling so much healthier with this routine, it is much more work-friendly.  I can spare three hours early in the morning or late in the evening and still put in a full day’s work.  Not so with a five-hour stint.)  As a result, both Don and I are back on haemodialysis and no other short-run patients will go on HDF for the time being.

The difficulty is that compared to haemodialysis, there is not much research available on HDF, especially for short runs.  Currently many doctors believe that long runs allow the body more time to recover from the shock of so much extra fluid.  But no one really knows what’s going on.

I still believe in the long-term benefits of HDF, and I would very much like to receive them.  If there is not enough research, maybe the answer is to become part of a local research program on short run HDF.  If one can be set up, ideally, after my trip to China and the UK in May, I will to go back on to HDF under controlled circumstances and see if we can find an answer.

Warfarin: the thick and the thin of it

I had an interesting experience with Warfarin this week.

Like many members of the BigD club, every now and then I get AF (Atrial Fibrillation) – an irregular heartbeat.  Symptoms are basically what you would expect from a heart that is out of rhythm and is operating inefficiently: weakness and shortness t of breath after a small exertion (like riding an exercise bike for 5 minutes).  You become the guy who gets sand kicked in his face, rather than being the kicker.

Checking for AF is easy: I put one or two fingers on my fistula, and if the thrill (the buzzing beat at the base of the fistula, where the artery is connected to the vein) is all over the place – two quick beats, a slow beat, a quick, a slow, two quicks, and so on – I’m in AF

I went to my cardiologist, who upped my amiodarone (Cordarone).  It took about a week on a higher dose to revert to normal rhythm.  At the same time he started me on Warfarin.  It seems that there is a risk of having stroke when the heart returns to normal rhythm (caused by blood clots resulting from the weak heartbeat being pumped back into the blood stream as the heart gains strength).  Not something I would like to happen.

Warfarin (also known as Coumadin, Jantoven, Marevan, Lawarin, Waran, and Warfant) is an anticoagulant that increases the time it takes for your blood to clot.  Some people think of it as a blood thinner, but it doesn’t affect blood thickness, it just stops clots forming.

There is an ideal concentration level where clots don’t form quickly, but where they will form eventually so that if you cut yourself, you won’t bleed to death.  The measure for Warfarin is called the International Normalised Ratio, or INR.  People not taking it usually have an INR of 1.  The target INR for most people on Warfarin is a range of 2 to 3.  My cardiologist set my range at 2.2 to 2.8.

The INR is usually tested by sending blood to a pathologist initially every few days, and once the level is established tests drop back to monthly or longer.  Many pathologists offer a Warfarin management service, where they measure the INR and send instructions to the patient, changing the dosage to keep the level in the target range.  My pathologists offers an SMS service, where they send instructions to my mobile phone a few hours after the test, and I adjust my dosage accordingly.

However, the best laid plans and all that.  Things were going well, and after three tests I was taking 1mg at night and getting close to my ideal INR.  Then, after the fourth test, my instructions said to take 4mg each night until the next test three nights later.

After the next test one of the pathologists phoned me and told me that my INR was way too high and that he was sending me, by courier, some vitamin K solution that was to be taken immediately.  Vitamin k promotes blood clotting.  I later found that my INR was 8.9, way out on the bleeding to death side of the Warfarin scale.  Luckily I had no falls or cuts.  I already tend to bruise easily, so I noticed no difference.

I stopped all Warfarin for a week and the level slowly returned to normal.

I wrote to the pathologist and asked what happened and what was being done to ensure it didn’t happen again.  They said it was human error.  Someone using the computer numberpad hit 4 instead of 1 and didn’t notice.  Until the next test.  Now, as a failsafe, they are reprogramming their system to query any dosage change greater than one 1mg automatically.

I am writing about this here to let all you Warfarin users know that if it can happen to me it can happen to you, but more importantly, that you can make the same check and not let it happen.

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... http://bigdandme.wordpress.com/2012/03/03/dialysis-hdf-feedback-and-a-warfarin-story/


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Wednesday, 29 February 2012 20:08

Thank you Jayaram!

Written by Kamal Shah
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Yesterday was Jayaram's last day with me. Almost six years back, when I was desperate for a renal replacement therapy better than conventional in-center hemodialysis, Dr. Girish Narayen, my nephrologist had suggested daily nocturnal home hemodialysis. The whole magnitude of doing something no one in the country was doing was quite disconcerting.

At that point I was dialyzing in the KIMS dialysis unit where Jayaram was the Lead Technician. I had become very used to him cannulating me. Whenever he would be away on some other work, I would be totally scared about the cannulation. I would rarely let any other tech cannulate me. The confidence with which he went about his work was striking.

I immediately checked with him if he would come home and dialyze me. Thankfully, he agreed!

It was new for him as well. But he was not overwhelmed. Confidence was always his biggest asset. I depended on him heavily for the initial setup as well. And then we started home treatments. At first we did only short daily dialysis. Within a few weeks, we moved to nocturnal. There were issues at times. He handled all of them with ease. Blood leaks, machine problems, cannulation problems. Apart from his experience and skill, it was his self-belief that aided him.

Slowly, he became a great friend. We shared a lot. He soon taught me everything about dialysis - priming, cannulation, starting a session and eventually closing a session. Many times when he would get delayed in his day job at KIMS, I would start off on my own. At one point I started dialyzing on Sundays as well, doing everything from start to finish on my own. This was thanks wholly to Jayaram's teaching.

I in turn passed on to him my love for all things Apple. Today, he owns an iPhone 4 (which he bought before me) and a MacBook.

Jayaram is leaving because his duties at KIMS are now taking up a lot of his time and he is unable to come in time and he feels I am being put to inconvenience. He feels I should get someone else to help. Fair enough. I now have a couple of technicians from NephroPlus who will be assisting me with my dialysis. I doubt if I will ever have as close a relationship with any technician as I did with Jayaram.

Thanks for everything Jayaram!

... http://www.kamaldshah.com/2012/03/thank-you-jayaram.html


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Tuesday, 28 February 2012 21:28

Today is Rare Disease Day

Written by Kamal Shah
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I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis.

Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases.

I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day.


This is the Official Rare Disease Day video:






... http://www.kamaldshah.com/2012/02/today-is-rare-disease-day.html


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In a recent study, it was shown that more frequent, longer duration hemodialysis had better outcomes than the conventional thrice weekly, four hour sessions that the majority of patients currently undergo.

When I had to switch to Hemodialysis after my peritoneal cavity lost its ability to filter water, I was broken. Life, I thought, was over. But then my nephrologist, Dr. Girish Narayen, suggested nocturnal home hemo. For me, within a few months it was clear that I had got my life back. I didn't need any clinical trials or proof that this modality was better - much, much better.

Today, about five years after I switched, I am leading a pretty much normal life. If I had continued on the conventional hospital based thrice a week dialysis, I wouldn't have survived. Yes, there are people who are doing pretty well on conventional dialysis but it is simply not for me. I value my independence a little too much!

This study is significant though. Many patients don't have an opportunity to try this. Nephrologists as well! Patients generally think the medical community is trying to maximize revenue and profits by asking them to dialyze more frequently. I don't blame them of course. I would think that way too. But such studies would help patients realize this truth and encourage them to make an effort to increase the hours on dialysis and feel better and live longer.

... http://www.kamaldshah.com/2012/02/is-better-when-it-comes-to-dialysis.html


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Thursday, 23 February 2012 09:21

Aashayein 2012 - Pictures

Written by Kamal Shah
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Here are some pictures from Aashayein 2012:

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Lighting the lamp. From L to R: Rama Kumari (NephroPlus patient), me, Dr. Brian Pereira (one of the top nephrologists in the world today, also the Chief Guest at the event), Manjunath (a pillar of the NephroPlus Banjara Hills unit), Vikram Vuppala (NephroPlus CEO).

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'Shatadhvanyanukarana Vibhushana' Hari Kishen - a dialysis patient himself, the best part of the program - his jokes on dialysis units were the highlight of the day!

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Me. In hindsight, the 'kurta' was a tad gaudy! But believe me, it looked more sober than in the picture!

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Patients enjoying a sumptuous lunch prepared as per the dialysis diet - salt free (patients could take one or two 1 gram salt packets) and were leached of all the Potassium

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Dr. P. C. Gupta, Vascular Surgeon, judging the Best Fistula Contest

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Zia, NephroPlus technician giving one of the patients a gift for answering an Antakshari question correctly

... http://www.kamaldshah.com/2012/02/aashayein-2012-pictures.html


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Sunday, 19 February 2012 23:55

Aashayein 2012

Written by Kamal Shah
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So, Aashayein is done! After weeks of hard work of the entire NephroPlus team including yours truly, the event is finally over. It is difficult to imagine that it is over. After occupying your mind's space for so long, when something of this magnitude is completed, it is often difficult to come to terms with it!

The event, as expected was a huge hit.

I reached the venue exactly at 8 a.m., the time we (the NephroPlus team) decided to be there by. As usual, I was the only person there. But to their credit, almost the entire team was there within fifteen minutes or so. Some patients started coming in by 8:15 itself. These people had come in from outside Hyderabad. It was heartening to see people come in from so far for the event. And these people were not paid to attend!

By 9:30, the hall was almost full. We started playing the Aashayein theme and last year's pictures. We started the program around 10:15 and Dr. Brian Pereira, the chief guest of the event, who is one of the world's top nephrologists spoke very well in Hindi though the word 'gurda' - Hindi for kidney - is a horrible sounding word. I wish they chose a different word! Then there was the traditional lighting of the lamp which Dr. Pereira and Rama Kumari, a NephroPlus patient did. The lamp did take some time to light though!

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From left, Mrs. Rama Kumari, me, Dr. Pereira and Vikram

After this, Dr. Rajasekhara Chakravarthi, nephrologist from Care Hospitals spoke on a few dos and don'ts for folks on dialysis. One thing that struck me during his talk was how almost all the tips he gave were probably known to every dialysis patient who has been on dialysis for a few years but were totally new for those who have been put recently on dialysis. When you get on dialysis, most of the diet tips totally shock you. A lot of what is good for people with normal kidneys is bad for people on dialysis! Dr. Chakravarthi's talk was great for those who were recently diagnosed.

After this, we had what probably was the best part of the show - the stand-up comedy act by Hari Kishen, a dialysis patient himself. He had everyone including me in splits. His take on the dialysis diet, the doctors and the accent of the nurses in the unit were absolutely hilarious! His show, for me, was the best part of the event.

This was followed by talks by Dr. Rajagopal, Transplant Surgeon and Mrs. Charitha Adikane, Dietician, on transplants and the renal diet respectively.

A sumptuous lunch followed which was prepared according to the dialysis patient's diet. The food was all salt-free and 1 gram salt packets were provided so that patients could add salt to their food as per their allowance. The vegetables were all leached to remove Potassium. I had a hurried lunch because as I served myself and generously mixed the salt from the packets and started digging into the delicious Malai Kofta, I spotted Dr. P. C. Gupta, the brilliant vascular surgeon who was scheduled to judge the Best Fistula Contest and speak on fistula care. I left my plate and dashed off to welcome him. I got back after making him comfortable to find my plate gone. I served myself another plate. This time I settled for plain rice and dal fry. I love this combination!

We started the post lunch session with the Best Fistula Contest and Dr. Gupta declared the winner after which he gave some great tips on how to maintain fistulas for long.

We had some games after this and ended the day with Housie and distribution of goodies.

I was totally tired after the event and reached home to crash. I awoke this morning with aches in my shoulders and legs! I am taking it easy today. There are some other interesting stories from Aashayein and pictures as well which I will post in the coming days.

... http://www.kamaldshah.com/2012/02/aashayein-2012.html


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Friday, 17 February 2012 03:13

HDF – A new and better dialysis?

Written by Greg Collette
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There is a change blowing through the dialysis world.  Until recently, we BigD club members have belonged to either the haemodialysis branch, or the peritoneal dialysis branch.  But for some time now, there has been a third branch, HaemoDiaFiltration, or HDF and it may just be the leap in technology we have been waiting for.

HDF is a souped-up version of haemodialysis.  It has been around in Europe for many years, but until recently, it has been fiddly to set up and expensive.  But things are changing and most new machines will do either haemodialysis of HDF.

What’s the difference?

First a little theory.  We kidney-challenged individuals experience a constant build up of toxins as a part of everyday life (eating, drinking, exercising, etc,).  These would normally be extracted and excreted by our kidneys, but because they have left the building, we use dialysis machines to do much of this job for us.  The toxins come in two broad sizes: large molecule and small molecule.

A haemodialysis machine works by using pressure to filter water from our blood through a membrane (the “artificial kidney” on the front of each machine).  Once through the membrane, the water mixes with dialysate fluid on the other side.  At the same time, many of the small toxin molecules in the blood diffuse through the membrane into the dialysate liquid.  The dialysate is then discarded (and those little toxins with it).

Unfortunately, the large toxin molecules are too big to go through the membrane.  So they hang around, eventually doing damage.  One of the most famous is beta-2-microglobulin which builds up in the blood, forming a few very large molecules.  This is relatively common in older BigD members, who have been on dialysis for more than 5 years.  The result is pain, stiffness, and fluid in the joints (like my knee!).  About 50 percent also develop carpal tunnel syndrome.  No news there.

So what of HDF?  A HDF machine works in two ways.  First, like a haemodialysis machine, it removes small toxin molecules.  Second, it uses a more porous membrane to filter the blood, and a higher water flow on the other side of the membrane.  This has two effects: the membrane filters larger toxin molecules from the blood and the faster water flow draws more of the water from the blood, removing even more toxins.  It is a complex process because it removes a lot more water from the blood than is required to reach dry weight.  To offset this, the machine calculates and adds the required amount of replacement fluid into the arterial line before it reaches the membrane.  The new HDF – dialysis machines do this automatically.

The benefits of HDF are not immediate, and some medicos are sceptical, but if I have the choice between storing up large toxin molecules on haemodialysis or dumping them on HDF, I choose HDF.  Unfortunately, no treatment can get rid of the large molecules already embedded on my bones, joints and tissue.  But it will slow or stop more being added.  And people starting HDF BigD today, they may never have the problem.

HDF went out of fashion for the last decade or so because of the complexity and cost.  Technology improvements mean it is now on the rise many countries through Europe and in Australia (though not in the US where being more expensive that dialysis, it is virtually unavailable).

While it is more expensive, some dialysis organisations and units are beginning to offer it because it has the potential to dramatically improve the quality of life for BigD-ers.

My Diaverum unit is now offering it to everyone who meets what are fairly simple criteria: patients should be relatively young and be facing the prospect of long-term dialysis (ie, not getting a transplant within a year or two).  Most of us meet these criteria.  Currently they have only two HDF machines, so we will be sharing, but all replacements machines will be HDF capable.  So in a year or two, everyone will be able to have HDF on every run.

I have had all of one run on HDF, and all is well so far.  One big benefit is that HDF is much gentler on the heart, I had less of the last-hour nerves and didn’t feel quite so hyped up when I come off –  I slept well only an hour after I finished.   Some others in the unit have been on it for weeks and say they feel much improved, lower blood pressure, no jiggly legs and generally feeling healthier.  Whether this is real or imaginary, based on what they expect to happen, who knows?

I don’t know if this is a leap in technology, or a small step forward, but I look forward to finding out.

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... http://bigdandme.wordpress.com/2012/02/17/hdk-a-new-and-better-dialysis/


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Tuesday, 14 February 2012 20:22

Update

Written by Kamal Shah
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Its been really long that I posted. I have been down with an infection in my fistula. It all started when I changed one of my cannulation sites for the arterial needle because I was having pain in one of them. Two days I used sharp needles to form the tract and the second day itself it looked like the tract was formed. I had used this site long back so I thought the tunnel reopened easily.

The third day, I used a blunt needle and it wasn't going in easily. So, I let Jairam try and he had to dig around a little before it finally went it. The rest of the night was uneventful. Morning was also fine while removing the needles.

I then had a shower and on my way to work the new arterial site started paining. It was a deep sting. Within an hour of reaching the office, I started feeling feverish as well and the area had swollen. I took some paracetamol and rested. I left early for the day. I was put on antibiotics by the doctors. After three days, the fever subsided and I am much better now.

This week is going to be one crazy week. Its Aashayein, this Sunday! The three days out of circulation have made things a wee bit rushed. Our radio campaign for the event goes live today. Watch out for a surprise in case you hear the English version! Let me know how you found it!

... http://www.kamaldshah.com/2012/02/update.html

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