Wednesday, November 30, 2011

Overheard at the dialysis unit

I was sitting inside the dialysis unit at NephroPlus doing my work at the nursing station desk when the nephrologist from UK I have been talking to came on her daily rounds. She was reviewing all the patients one by one and she came to a young 28 year old guy who has been with us for the past half year or so.

After some discussion, I heard the guy ask, "Can I have one liter of water right now? They can pull it off during dialysis, right?"

All of us including the nephrologist, the other patients on dialysis and I burst out laughing!

In the same breath, he said, "Doctor, I feel like having six liters of water every day!"

No one except a dialysis patient can understand these emotions.

Sunday, November 27, 2011

Pulling off more than I can handle

Most people on dialysis have this irresistible urge to pull off more fluid during a dialysis session than is actually required. The reason is very simple. We have to restrict our fluid intake. Most of us are allowed no more than a liter of fluids in 24 hours. And this includes anything that is fluid at room temperature. Curd, ice-cream, tea and of course water among other things all put together should not cross more than a liter.

So, when we get off dialysis, the meter starts ticking and every sip of water we take counts towards the fluid weight gain between two dialysis sessions. All the fluid that is present in our body above the 'dry weight' (weight of the body minus any extra fluid that would have been removed if the kidneys were working) is usually targeted for removal during a session.

If too little is removed, you need to watch your fluid intake very carefully until your next session - when you can pull off the extra fluid. Removing too much can cause your Blood Pressure to fall or can cause muscle cramps. Most people on dialysis prefer the latter! Because we hate, simply hate restricting our fluids! The basic restriction is bad enough. Further restricting because you did not remove enough is simply not acceptable.

This is what happened to me recently. I tried removing too much fluid and this caused the low BP.

Most family members of people on dialysis just cannot understand why we do this. Technicians and nurses rarely even make the effort. They treat it like another problem to deal with during dialysis sessions - one that increases their work.

This can be understood only by someone who goes through this. Someone on dialysis.

Saturday, November 26, 2011

The human body's alerting mechanism

Last night I found myself up around 3:30. I was slightly sweaty and felt weird. I tried hard to go back to sleep but couldn't. I waited for a while thinking that I would fall back asleep. No luck. I was feeling strange. I figured that my Blood Pressure (BP) was a little low. My body felt weak and drained.

I then woke up Jairam, the tech who comes to help with my dialysis. It was quite an effort. I told him to check my Blood Pressure and infuse some saline. I also asked him to turn the ultrafiltration (UF - removal of water from the body - an important function of dialysis) down. He did all this. He then checked my BP. The higher one was 60! Which was terribly low. Probably the lowest I have ever had! He infused some more saline. My BP was now 80. I could go back to sleep in a few minutes.

I had had a heavy dinner last night. I had skipped dialysis the previous night. When I checked my weight it was 4 kgs above my dry weight. So, I set the UF target to 4 liters. What I overlooked was that I had just had a heavy meal and 4 kgs was probably only 3 kgs of fluid weight. But I had skipped dialysis the previous night and thought I could not put on anything less than 4 kgs!

The important thing I want to highlight is how my body woke up when the BP went low and I couldn't sleep back. If I would not have woken up, the result could have been disastrous. But despite being very tired, I woke and couldn't sleep back. It was almost like my body realized that something was wrong and something needed to be done.

Isn't this simply amazing? I had written about the human genome and the sheer beauty of it all and this is another example of how fascinating the human body is. It has its own little mechanisms of working. It has its own little sub-systems that are so strikingly complex and yet so strikingly wonderful.

Sunday, November 20, 2011

In search of the perfect Sitafal ice cream

My memories of Sitafal ice cream go back to my childhood when my grandfather (mom's dad) would make it and call my brother Prasan, my cousin Nisha and me to his house to have it (we were his only grandchildren at that time). We absolutely enjoyed this and several other treats he prepared and spoilt us completely with! 'Ferndale' boasted of a garden like few others in the city and he grew amazing sitafal, tamarind, guava and mangoes along with things like curry leaves, limes and badams.

Making sitafal ice cream is definitely not for the lazy. This fruit is, by itself, difficult to eat. Every bit of pulp has a big seed inside and you need to use your teeth dexterously to remove the pulp and throw the seed away. These days, a lot of chemicals are also sprayed on the fruit presumably to prevent pest attacks. This makes it necessary to be careful while eating the fruit so that none of the pesticide gets into your mouth. It can lead to a bad cough. The sitafal itself is often wrongly accused of causing the cough but in reality, I think it has more to do with the pesticide that gets into your mouth in small quantities.

Making sitafal ice cream is an infinitely more arduous endeavor. You don't have the luxury of using your teeth to de-seed the pulp. You have to do it with your bare hands if you're doing it at home. Once you have the pulp, you can use it for ice cream or basundi or whatever other concoction you can come up with. Almost anything with sitafal should taste good!

Mumbaikars were treated to sitafal ice cream at the popular Apsara parlour. Then came Naturals. Naturals came to Hyderabad a year or so back and they already have a few outlets in the city. The sitafal ice cream, like many of the other fruit based ice creams is available only during the sitafal season. The sitafal ice cream from Naturals is truly a boon to mankind! It is so good.

The sitafal bits which are in abundance in the ice cream really enhance the flavor. It is nice and creamy, has the right degree of sweetness and the texture is just right. This is one of the ice creams you want to relish every little bit of. A little creamy flavor here. A little bit of sitafal pulp there. Every spoonful is a delight in itself. You just don't want the bowl to finish. And when it finally does, you are so disappointed and craving for more, it is difficult to resist the temptation of ordering another.

Saturday, November 19, 2011

Dialyzing our elderly

One of our older patients at NephroPlus passed away last night. He would come in twice a week. His son mostly accompanied him. I have rarely seen a son so dutiful and loving. He would bring in his laptop and work from the couch we provide next to the dialysis bed. The patient was getting tired of the disease. A couple of weeks back he had stopped coming. I talked to this son and wife a couple of days back. They said he was not willing to come for dialysis. They were trying hard to convince him but he just wouldn't listen. I talked to them yesterday morning and was planning to go over to their house this morning to try and convince him to come for dialysis. Suddenly last evening he became unconscious and was rushed to a hospital. But I guess it was probably all over.

Dialysis can be mentally draining. Week after week, without any relief, without any end to the suffering in sight, you go on and on. There is no light at the end of the tunnel for many. The lucky few who get a transplant get some respite at the end of it all but for the vast majority, this is a permanent thing, something they have to endure for life.

This has led many to question the necessity of dialyzing people who have 'lived their life'. Dialysis is not going to cure anything. Neither is it going to make their lives more pleasant. Dietary and fluid restrictions can be torturous. But this leads us to the question, "What if you don't intervene? What if you don't dialyze them?"

Dr. John Agar, an Australian nephrologist of international repute, in an answer to a question on a forum, says, "Conservative (non-interventional) care is a real and often advisable course. By intervention here, I mean machine and equipment intervention. Good studies - really sensibly and well done - have come from the UK and elsewhere, showing that CKD patients >80 years of age with more than one comorbidity ... do as well - or better - and certainly maintain an better quality of life if treated conservatively without dialysis. Their survival is a little less than 3 months shorter (on the average) than matched patients who chose dialysis ... but their quality of life, their hospitalisation rates, their last remaining time, is better."

He goes on to add, "The dialysis only adds to the misery, rather then relieving it."

The key here is whether to start dialysis or not? Once you start it is very difficult to withdraw. So, relatives of patients above eighty years of age must weigh the pros and cons carefully before deciding to start dialysis. More importantly, doctors must think hard about the benefits and the difficulties and then together with the family make this decision. I am not, for a moment, suggesting that we should not dialyze anyone over 80. All I am saying is it is not the same as dialyzing someone who is much younger. I am saying weigh the pros and the cons, arrive at a decision after a logical consideration of the facts and if the decision is that the patient is going to benefit with dialysis, then go for it.

Don't do it just because you have to do it.

Tuesday, November 15, 2011

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!

Friday, November 11, 2011

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!

Wednesday, November 9, 2011

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.

Tuesday, November 8, 2011

Is checking creatinine really useful once you are on regular dialysis?

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!

Monday, November 7, 2011

Moving from a jugular to a fistula: mixed feelings

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!

Thursday, November 3, 2011

Blood transfusions - very different from the Bollywood version

Recently someone on dialysis who had a low hemoglobin was advised by his doctor to take a blood transfusion. Innocently he asked me if he could get a donor and we could take the blood from the donor and transfuse it immediately to him?

The scene from the Bollywood classic Amar Akbar Anthony came instantly to my mind where Amitabh Bachchan, Vinod Khanna and Rishi Kapoor, lying on three beds are donating blood. Blood from the three cannulas is flowing into one bottle and from that bottle, the blood flows through a line to Nirupa Roy's veins - all inline!

Makes for some excellent cinema. Unfortunately, blood transfusions are not so simple and straightforward in real life!

In real life, blood is never directly transferred directly from donor to recipient. It is first collected from the donor, then screened for viruses such as HIV, Hepatitis B and Hepatitis C and then a cross matching sample is taken from the recipient and another test is performed to certify that the donor's blood is suitable for the recipient.

Also, often, the recipient is advised some subset of the whole blood that is drawn. It could be packed cells, platelets etc. Sometimes, whole blood is also infused.

Also, blood transfusions are not a very healthy thing to do too often. There is always a risk of catching viral infections that have not been detected due to the virus being in the incubation period. Even inherently, blood transfusions are unhealthy because they prevent the body from producing antibodies.

This means that we should be constantly monitoring our hemoglobin levels and take the dose of erythropoietin necessary to avoid blood transfusions. The guidelines for the dosage of erythropoietin varies from country to country but the guideline that I have been recommended is to make sure the hemoglobin is between 10.5 and 11.5. Anything less than that and you don't feel as well and is risky in other ways. Anything more than that and you could risk clotting your fistula. Again, you should check with your nephrologist about what hemoglobin range you should target.