Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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Tuesday, 15 November 2011 08:13

Have Anna Hazare and friends lost their way?

I think so. Ever since Anna Hazare ended his fast at Ram Lila Maidan, the group has been plagued with one problem after another.

It all started with the Hisar by-poll. I agree with the Congress' contention that the entire anti-Congress campaign was unnecessary. What had changed since the fast was called off? Did anyone say the Lok Pal bill would not be passed in the winter session of Parliament? If they had doubts about the Congress' intentions, then the fast itself should not have been called off!

Then the allegations against Kiran Bedi. She billed her hosts for executive class whereas she flew economy. The excess money, she says, went to the NGO and not to her. You cannot call this corruption, for sure. But dishonest, definitely yes! A group of people fighting against corruption at this level and claiming the support of the masses must be totally above board. They must have impeccable credentials and no one should be able to point a finger at them. Sadly, Kiran Bedi has not lived up to this ideal.

Which brings me to the referendum they claim to have held in which an astonishing 99% of the respondents said they would not elect Sonia Gandhi if the Lok Pal bill is not passed. Just what were they thinking? This last act was extremely immature. Dorab Sopariwala, on a news channel said that when pollsters come up with anything more than a 60% majority, they start getting nervous. And here was a 99% result. Obviously, the question was 'leading'. "If your MP does not support the Lok Pal bill in parliament then will you vote for him/her?" Who would answer that with a 'no'?

I am fully in support for a strong Lok Pal bill and have written in support of it here and here. But after the fast, I think the group has failed to act in a mature and reasonable manner. And if the group doesn't correct this, this could cost us the bill. Anna Hazare must be strong and take bold steps and be more in control of what is said and done in his name.

For the sake of this country!

... http://www.kamaldshah.com/2011/11/have-anna-hazare-and-friends-lost-their.html

Friday, 11 November 2011 09:54

Yesterday, I did the unthinkable

Yesterday, I went out for a drink with some folks.

I ordered a mocktail and some bruschetta and made myself comfortable on the sofa-like seating they had at the bar. The bruschetta was good and the mocktail was tasty. It was served in quite a big glass. I wasn't dialyzing yesterday - it was Thursday. In fact, I mentioned to one of the people on the table, who asked me if I drank and I replied that I did not, that I wasn't supposed to drink even the mocktail since I was supposed to watch my fluid intake.

Under normal circumstances, I do not leave liquid in a glass. Even if it is water. If I am served liquid, I finish it. No exceptions. So, I usually rarely fill up a glass of water. I feel guilty. Two half glasses is fine. But never one full glass! Even though I am on nocturnal and can afford to have a full glass, the medical community has gotten me used to never having a full glass! Damn them!

But yesterday was different. I was sipping the mocktail slowly, enjoying every sip. I was half way through. I left the rest! I don't know why. It was not like it was not tasty. It was very good. But for some reason, I drank only half. Maybe because I was not dialyzing yesterday?

When I went home and checked my weight, I was only 1.5 kgs above my dry weight! Drat, I thought to myself; should have had the full glass. Only 1.5 kgs in one day? Even conventional dialyzers do better than that! And then I had a horrible thought. Am I becoming a compliant patient? Nooooo! Spare me!

... http://www.kamaldshah.com/2011/11/yesterday-i-did-unthinkable_11.html

Tuesday, 08 November 2011 18:52

Having standards of care in dialysis units

I have recently been interacting with a nephrologist of Indian origin who returned to India from the UK. During my discussions with her, I found that in nephrology settings in the UK (and in most of the US, Canada and possibly Australia and other 'developed' nations as well), they have standards of care that are well documented for all the common stuff related to dialysis patients.

For example, these are the blood tests you do every month. If the hemoglobin falls below some value, you start the patient off on Darbepoetin. No other type of Erythropoiesis Simulating Agents, mind you. Only Darbepoetin. And the dose would also be fixed. If the hemoglobin rose above some value, then you reduce the dose to this much and above this value, you stopped it altogether.

You had the basic rules for almost everything. What basic medication types must all patients on dialysis take? For example, most would be put on Phosphorus binders unless there was a compelling reason not to.

This is very different from the way medicine is practiced here, in India. Here it is very individualistic. And no, I am not referring to the patient! Everything depends on the doctor treating you. If your blood tests shows some value and you take it to your nephrologist, the way he would react could be totally different from the way the nephrologist of the dialysis patient on your neighbouring bed in the dialysis unit does!

While I agree to those that might argue that medicine is a very subjective thing and every patient is different, I find it difficult to see why the basics must be different. I interact with a lot of dialysis patients at NephroPlus and since we get patients from multiple nephrologists, I find that most of them are on very different treatment regimens for the same condition. It cannot be that different.

With some of the basics being determined by maybe, a panel of experts in advance, the nephrologists can actually focus on the more difficult challenges presented by patients. They could, without thinking too hard, instinctively react to the fundamental problems and spare their thinking time for peculiar problems faced by some patients.

There is one more advantage with this approach. Any new developments can be incorporated into these standards more uniformly and early on and not be prevented from reaching the patient simply because his or her doctor does not read up on the internet that often.

... http://www.kamaldshah.com/2011/11/having-standards-of-care-in-dialysis.html

Most dialysis centers have standard protocols when it comes to monthly blood tests. Most centers have Serum Creatinine as one of the tests required to be done as part of these tests.

From Wikipedia: "Creatinine is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).... Creatinine is chiefly filtered out of the blood by the kidneys."

So, if the kidneys are not functioning as well as they should, the levels of Creatinine in the blood rise. So, Creatinine can tell us how well the kidneys are functioning.

Once you are on maintenance hemodialysis, it means that your kidneys are not functioning. This is different from the few sessions that you need to do when you have Acute Renal Failure due to snake bites, accidents etc. When you are on maintenance hemodialysis, it means that you have Chronic Renal Failure (CRF) which means that the kidneys are not going to get back their function.

What is the point in checking Creatinine levels for those with CRF? Are you going to do something if the Creatinine level rises? Or if the Creatinine level falls?

Internationally too, mostly, Creatinine levels are not checked for CRF patients.

Despite this, month after month, most doctors prescribe Creatinine levels for their CRF patients. Patient also get attuned to this and expect to be asked to get their Creatinine levels checked. They are actually shocked when Creatinine levels are not checked!

A lot of these patients are secretly hoping for a miracle. That their Creatinine levels start falling and their kidney function returns. Well, I really don't blame them. But there are other ways to know this. Your urine output would start rising to begin with.

Please correct me if I am wrong on this!

... http://www.kamaldshah.com/2011/11/is-checking-creatinine-really-useful.html

When I was put on dialysis way back in 1997, I was given an AV Shunt. It was a small surgery, done in an Operation Theater. Dialysis was totally painless. The arterial and venous lines were connected to the two ends of the shunt and dialysis would be done.

Shunts are outdated these days with the preferred mode of a temporary access for dialysis being a jugular catheter. The insertion of a jugular catheter is a more simple process than a shunt. It is mostly done outside an Operation Theater, often on a dialysis bed.

Dialysis using a jugular catheter is also painless. The two ends of the bloodlines are connected to the two ends of the catheter lines and the dialysis is started.

When I eventually got my fistula in 1997, I remember every one around me was excited. "The fistula is working!" "Here, feel the thrill, the bruit", the doctor would say offering me the stethoscope to hear the whoosh sound inside.

Dialysis, however, became horrible. There would be four needle pricks every time. Two to inject local anesthetic and two more for the actual fistula needles which were monstrously huge. I started dreading the whole thing.

So, what is it about the fistula that has medical professionals so excited?

For one, accesses like shunts and jugular catheters are temporary. They last for at most, a few months. And the number of such accesses you can have is limited. A fistula, on the other hand can last for decades. The main reason for this is that while temporary accesses are external accesses (there is something coming out of the body and this 'exit site' is highly susceptible to infection), a fistula is an internal access (the vein and the artery are connected inside the body, under the skin - so there is very little chance of infection).

However, the start of a dialysis session and at times, the entire session becomes a painful experience. The needles are by no means pleasant. So, while everyone around you is happy that you have finally got a fistula, you start wondering what the excitement is all about?! Days with the jugular were so much more pleasant!

One thing positive about the fistula from our perspective is that we can finally take a complete shower. With a shunt or a jugular catheter, you had to always be careful that you did not wet the site. With a fistula however, once the surgery site has healed, you can take a full blown shower, for hours even, without having to bother about wetting the site!

... http://www.kamaldshah.com/2011/11/moving-from-jugular-to-fistula-mixed.html

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