Saturday, March 26, 2011

My list of preferences for renal replacement therapies

I have seen pretty much all modalities of renal replacement in my almost 14 years of experience with kidney disease. Here is the list of modalities in order of my preference:

1. Kidney Transplant: Top there is the indisputable king, a renal transplant. Despite all the risks, the costs, the possible complications, a kidney transplant continues to offer the best outcomes. For me, the most important benefits of a transplant are the freedom from dialysis and the freedom from fluid restrictions. Despite all what people say about daily nocturnal offering outcomes equivalent to cadaveric transplants, I still find dialysis and its attendant problems, both physical and mental, too overwhelming. I would take a transplant any day.

I would go so far to say that once you are diagnosed with kidney failure and are going to need some form of replacement 'soon', do all you can to get a transplant without having to get on to dialysis at all. Try not to know fluid restrictions at all. This is possible and is happening quite often these days. All it needs is swift, prompt, proactive action.

2. CCPD: Second would be Peritoneal Dialysis connected to a cycler at night. This would free up your days and give you the benefits of minimal fluid and diet restrictions. With portable cyclers already available, travel would also not be an issue.

3. CAPD: Third would be manual Peritoneal Dialysis. Three to four exchanges every day. This offers the advantages of minimal diet and fluid restrictions. The only hassle being the 30-35 minutes three to four times a day that you need to spend on the exchanges. Travel is also possible because most providers nowadays have the facility of supplying bags wherever you go. Ideally the patient should self-administer the exchanges to realize the true flexibility and independence of PD.

4. Daily nocturnal home hemodialysis:  The best hemodialysis modality. 7 to 8 hours, 6 to 7 nights a week. The problem is you still need to suffer the needles. There is also a certain element of risk. Blood leaks can happen. Hypotension and cramps can happen. Despite all this, the benefits far outweigh the risks. The full advantage of the modality can be realized only if you self-dialyze. It is difficult but can be achieved with proper training available in some countries (not in mine).

5. Short daily home hemodialysis:  Two to three hours everyday at home. The problem with this is the fluid removal rates can still be high. Fluid restrictions will still apply. Risks are reduced because you are most likely awake.

6. In center nocturnal hemodialysis: 4 to 6 times a week, 7 to 8 hours in center. Offers the benefits of longer duration dialysis but you need to go in-center. Cross infections, inflexibilities.

7. Twice/Thrice a week home hemodialysis: Regular hemodialysis except that its at home. The problems of the modality remain. However at least you are saved from the danger of cross infections with viruses such as Hepatitis B, C and HIV.

8. Regular, in-center hemodialysis:  Regular hemodialysis in a center. My least favored option. The default for most people. The only option most people are told about.

Friday, March 25, 2011

Coding conventions versus readability

There is a coding convention in most languages that says do not use literals in the code. Literals are constants line 0, 1, "India" etc. Things which have a constant value. The advice is to declare a static constant and use that in your code. The reasoning is that if you want to change the value later, you simply need to change it at one place, at the top. Makes a lot of sense.

However, there is one aspect that the conventions don't mention which is very important in the use of this convention. About the name of the static constants that are being used. Let's see an example. Let's say we want to use a constant for the number of hours in a day, a good name for this constant would be NUM_HOURS_DAY. I have seen some people name this constant TWENTY_FOUR! Now the sole purpose of going about this whole exercise is so that you can change the value of this constant easily later. If you name it TWENTY_FOUR, sure, you can change the value to 25 but suddenly, the code becomes very confusing.

This happens more for things like 0 and 1. I have seen people name a constant that should have been declared IS_VALID = 1 instead declare it as in ONE = 1. The whole point is lost.

Now, that brings me to how far we should go in using these conventions.

I have been working on pure Java/JDBC code recently. The idea was fast performance and minimal fuss. So, we went with this. One problem with this approach is you have to handwrite the SQL. So you are actually preparing strings that hold SQL commands and then preparing statements and then running them. Well, since we are pretty much not going to change the database being used in this application from MySQL to anything else until December 12, 2012 and after that anyway, it won't matter, it should be ok.

So, the question now arises, as to whether these SQL commands should be scattered about in the code or should we declare them all as static constants and use the constants? For example,

private static String QUERY_FETCH_ALL_BOOKS = "select * from book";

Yes, the purist in you would say. And I will agree with you, if only for a bit.

Now, let's say the query becomes a tad more complicated:

"select users.user_id, users.email, count(*), max(classified_ads.posted)
from users, classified_ads
where users.user_id = classified_ads.user_id and users.user_type = ? and users.status = ?
group by users.user_id, users.email
order by upper(users.email);"

Now by keeping this query as a constant and using only the constant in the code, you lose out on the specifics of the query. You have no clue on what the parameters are and you do not know what columns it returns. By intelligent naming, may be you can resolve this to some extent. But what advantages does this offer? It only makes things more complicated. The readability of the code is lost. The concept behind this convention is excellent. But it should be used where it makes sense.

I believe that conventions should be there to facilitate better coding and maintenance. They should not be rules written in stone to be used whatever happens. We should use our heads and decide where they should be used and where they should not.

Wednesday, March 23, 2011

Atypical HUS Patient conference at Newcastle

The Center for Life at Newcastle upon Tyne, UK, is organizing a conference for patients and their family on atypical Hemolytic Uremic Syndrome on Saturday, June 11th. This is a great initiative by Dr. Tim H. Goodship, whose lab found out that I had the CFH/CFHR1 hybrid gene due to which my kidneys failed and my transplant did not work out.

Dr. Goodship is one of the world's leading researchers in atypical HUS and it is great that he is organizing this conference. So little is known about this disease that patients and their families are often grappling with ignorance alongside the disease itself.

The conference will cover the basics of the disease, the complement system and treatment options including liver transplants and eculizumab. The conference is also going to set up a support group for patients and their families in the UK. More details can be found here.

Friday, March 18, 2011

Daily dialysis makes restless legs better - yeah, now you tell me!

"For dialysis patients, performing daily dialysis at home can help alleviate sleep problems related to restless legs syndrome (RLS), according to a study appearing in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN). RLS, a common and troublesome problem for dialysis patients, affects hemodialysis patients about four times as often as people in the general population."

This is an excerpt from an article you can read here.

Restless Legs was my most major problem for the longest time on dialysis. Even when I was on Peritoneal Dialysis. The worst part was I had no clue what it was until I joined a group of dialysis patients on the internet. It was difficult to describe. My legs would feel totally different. I had to get up and shake them. Or walk around briskly. Car journeys became hell. I often would ask my family to stop and I would have to get out and prance about. Movies were equally torturous. My sleep was also affected. I had no clue what this was. This was my biggest problem on dialysis.

Then one day I joined a support group for dialysis patients on the internet. There as I was browsing through the archives, I couldn't believe my eyes. Exactly the same thing. Many people had the same problem. And what was more, there was a solution as well!! Gabapentin! I printed out the posts that described the symptoms and the fact that Gabapentin had helped and took this to my nephrologist. He prescribed Gabapentin for me. Within three days, the restless legs disappeared! I was so relieved!

Around May 2006 I started daily dialysis at home - short daily for about three weeks and then daily nocturnal. Most of my side symptoms were settling down. So, my nephrologist and I decided to try and stop Gabapentin too. No restless legs! This proved to me, without any trials and studies that daily dialysis helps restless legs too.

But now it is official! 

Thursday, March 17, 2011

PTH yo-yo-ing again

Just when I thought I had a handle on my Calcium-PTH balance, the PTH goes high again! I settled on a 2.75 mEq/l Calcium acid solution and 0.5 mcg of Calcitriol per day to manage this. For the last month or so, the PTH has been between 250 and 300 pg/ml which is ideal for people on dialysis (it should be between 2 to 2.5 times the normal of the lab testing it - each lab can have a different normal range). Now, without any change in medication or therapy, the PTH increased to 502! The Calcium is 9.9 mg/dl.

The question I have in my mind is - is there no steady state where PTH is concerned? I have tried all combinations of calcitriol, cinacalcet and the Calcium level in the acid part of the dialysate. Something works for a short while and then suddenly - boom! You have to start all over again!

I need to take this balance very seriously because I really suffered for a long time with bone pain which is directly related to the Calcium and PTH in the body.

I plan to now restart Cinacalcet. The rationale for this is - the Calcium is close to the upper side of normal. I can try and bring down the PTH by either increasing the Calcium in my acid to 3 mEq/l or by increasing the calcitriol. However, both will cause my Calcium level to rise further which may not be good. So, I guess Cinacalcet will be the best bet. Of course, I am going to discuss this with my nephrologist. However, in this whole equation, I find that common sense is more important than pure nephrology!

Tuesday, March 15, 2011

Rest in peace, Narsimhan uncle


Mr. P. L. Narsimhan, celebrating his last birthday at NephroPlus, with wife Lakshmi. He passed away yesterday morning. He was on dialysis from the last few years. He was also the father of Ashwin and Anand, my childhood friends. Rest in peace, uncle.

Sunday, March 13, 2011

NephroPlus turns one!

NephroPlus turns one tomorrow! What a year it has been! We started with one center with four beds and one patient. Today we have two centers with 14 beds and about forty patients. The numbers don't tell the whole story.

When we started, there were two things that were paramount. Prevention of cross-infections and making the whole dialysis experience more pleasant. In my mind, these were the two biggest problem areas in dialysis.

When a person is suffering from kidney failure and needs to undergo dialysis week after week with no respite, no breaks, isn't it criminal to give him or her another life-threatening disease involving another critical organ of the body? Vikram, Sandeep and I realized the gravity of this problem. Vikram and Sandeep brought in their out-of-the-box thinking and expertise in processes and have, touch wood, solved the problem. By institutionalizing novel methods and unique systems, they helped remove the scourge of cross-infections from NephroPlus. I pitched in a little myself by dissecting the guidelines published by the Center for Disease Control in the USA and provided inputs. Prevention of cross infection remains NephroPlus' number one priority.

The second thing we were keen on doing was to improve the dialysis experience for patients, whom we call guests today. Having experienced dialysis sessions at many hospitals in India, I explained to Vikram and Sandeep the thorough boredom I felt during a dialysis session. I also explained the drained feeling I usually felt at the end of a session. Both of them understood entirely and they decided to put an individual television set for each dialysis station and provide free Wi-Fi access. This facility is there in very few dialysis centers in India today.


With Vikram and Sandeep at the launch a year back

Apart from all this, when I interact with guests at NephroPlus, there is one thing most of them say - the center feels like home. The technicians and nurses treat them with so much love and care that the whole experience becomes that much less painful. 

We have set very high standards in the first year of operations. It is going to be very difficult to live up to them. But I am sure we will. The main reason being we all love what we are doing. That makes the task much easier. Going every morning to the center is not a chore. We all look forward to it.

Here's wishing ourselves many more years of success!

Saturday, March 12, 2011

Why does the national media ignore the Telangana agitation?

No matter whose side you are on in the Telangana issue, there's one thing you can't deny - there is a definite groundswell of support for a separate state. A large majority of people in the area do want a separate state. There has been a massive agitation going on for the past many months and this has effected normal life in the state especially the capital Hyderabad.

Despite this, I find, rather surprisingly, that the national media chooses to ignore the entire agitation.

Take 10th March for example. Hyderabad was almost shut down. Many statues were vandalized on Tank Bund. Despite all this, the matter was barely covered in the national media. Channels like NDTV have a penchant to cover news that barely effects us. The amount of time they spent in covering Aarushi Talwar murder case and now the Radhika murder case is frankly, quite ridiculous. These were ghastly murders, no doubt. However, how important are they to the nation? How many people do they effect?

Compare this to the question of Telangana. An entire population might be divided (not that it is wrong or right, but it will definitely effect all of them). Depending on which side of the divide you are, you either get what is rightfully yours or your basic identity is going to be broken. Isn't this more important than one single family?

For weeks, the government was paralyzed. Many important decisions were withheld. The conduct of examinations and careers of thousands of students were in jeopardy. In spite of this, channels do not find this important. The union government is of course doing nothing. Instead of deciding on the issue one way or the other, it is in a state of limbo. That again is a topic for another post. But the press, truly needs to get its priorities right.

Friday, March 11, 2011

Who is ultimately responsible for your health?

You. Of course.

Especially when you have a chronic condition like kidney disease. I have found that you absolutely need to know it all. If you don't, find out. There is so much happening in the world of medicine every single day. Yes, doctors are there. But they are very busy. More so in a country like India where the ratio of nephrologists to patients is horribly low.

Nephrologists, in spite of their best intentions have very little time for individual patients. So, though they will be able to advise you on general things, there will be many things specific to your condition that they will not have the time to read up on. It is really up to you to figure out. Yes, discuss your findings with him or her. Hope that your nephrologist is open to such discussions (mine is).

Even on general things, it is important for you to be aware of the different options. You know your body best. You know your mind best.

Another thing that I have learned over the years is that the advice you are given is not necessarily in your best interest. In this industry there are a lot of factors at play. A lot of non-medical factors. This is sad but true. As patients we must be aware of this reality. Read up as much as possible. Talk to as many people as possible. Only then take a decision.

Thursday, March 10, 2011

Protect your kidneys, Save your heart

Today is World Kidney Day. This year's theme is "Protect your kidneys, Save your heart", which is very true. Most people who have kidney disease do not die of kidney disease, they die of other conditions caused by failed kidneys, most likely related to the heart.

So, it is important that if you do not have kidney disease, you should take steps to make sure that you don't ever get it. The best part is - it is in your control! The only thing you need to do is to recognize that fact and do something about it.

Here are five things you can do to reduce your risk of getting kidney disease (mostly taken from the official World Kidney Day website):

  • Reduce your salt intake
  • Drink at least 8 glasses of water every day
  • Exercise at least 30 minutes every day
  • Eat natural, healthy food
  • Avoid antibiotics and pain killers unless prescribed by your doctor

A quick glance at the list and you might be saying, "What's new?" Exactly! That's what it is. The same old stuff. But take one more look at the list and see how many you are doing? It is very simple. You don't need anything complicated to prevent kidney disease. It is all straight forward. Its just about being disciplined and consciously making an effort.

Most of us get caught up in our daily lives without realizing that there could be a time bomb ticking inside us. We realize this only when it blows up. And by then it is too late. We all think that we are immune to these kinds of chronic conditions. "We will never get them". Honestly, I never, ever, even remotely considered the possibility of being diagnosed with a life threatening, life-long condition such as this. When it happened, it happened. I could do nothing.

You are probably in a stage where you can do something. The list above, when you think about it, is very general. It will help prevent a lot of chronic conditions. It is not at all specific to the kidneys! So, make a pledge. Use whatever tricks that work for you to follow these. You will not regret it.

Tuesday, March 8, 2011

Aruna Shanbaug case: SC does not allow euthanasia

I have been keenly following the Aruna Shanbaug case in which the Supreme Court gave its verdict yesterday. You can read the details of the case and the verdict here. The court turned down the plea of Pinky Virani who was fighting for allowing Aruna Shanbaug to die rather than keeping her alive when she could not lead a life of dignity.

This is a very tricky case. On the one hand you have a woman who has been confined to a bed for the last three decades in a semi-vegitative state. On the other hand, she has not expressed any desire to die and she is not totally in a coma as she consumes food put in her mouth and expresses emotions too.

I think the Supreme Court's judgement is right.

The desire to live is a very basic, primordial thing. Every living cell wants to live. So, when there is no means to determine that a person wants to die, there is no option but to assume that he or she wants to live, in whatever form.

I have often wondered if ever, I were in a similar situation, what would I want? I really have no answer. It is impossible to say without being in that situation. At that point, would my suffering be so much that I would want it ended? Or would my desire to live supersede that desire?

I really hope I never have to be in that situation!

Thursday, March 3, 2011

My iPhone 4 is now in Mumbai

I have been yearning to get an iPhone 4 from the time it has been announced. I couldn't get it from the US too. The main problem was Apple did not sell the phone without an AT & T contract. So, there was no way you could get a phone even if you could unlock it here.

Then, I somehow got to know that factory-unlocked iPhone 4s were being sold by Apple in some countries like Hong Kong. My cousin Nisha was travelling to Hong Kong in November and I asked her to buy one for me from there. She went to the Apple store in Hong Kong when she was there. There was a waiting period of 4 to 6 weeks! They asked her to leave her credit card details and her phone number and they would call her when the phone arrived. My cousin did that despite having to leave Hong Kong in a few days. The plan was to get a friend to pick it up and send it to India whenever it arrived.

Four to six weeks became two months. But finally the phone arrived at the Hong Kong store. My cousin got a call and she requested a friend to pick it up. Now the next step was to bring it to India! We waited and waited for someone to make plans to come to India from Hong Kong. My cousin, by now, was as anxious as I was to get the phone. Shipping it wasn't an option. Who wants to risk shipping an iPhone and have it come through Indian customs?!

A few misses (people coming but we not knowing) later, finally the lady who picked up the phone herself arrived at Mumbai a couple of days back. Nisha has yet to lay her hands on the phone but confirmed reports say the phone has indeed arrived.

I am off to Mumbai this Saturday to pick it up.

Tuesday, March 1, 2011

Which blood tests do people on dialysis need to do regularly?

I have seen such conflicting opinions about the blood tests people on dialysis need to do regularly - monthly, quarterly and so on. Every doctor, every hospital and every dialysis technician has his or her own opinion. Yes, every individual has a specific requirement and the list of tests will vary depending on his or her condition. But there surely must be a common bare minimum that every dialyzor must get done, right?

Hemoglobin is probably the only test that everyone concurs. Most people get this done every month at least. A good hemoglobin is essential for general well-being. It also dictates the amount of Erythropoietin you need to take.

On the rest of the tests, pretty much everyone has their own opinion.

Some people get the Creatinine and Urea done every month. I totally understand getting these done for people in the early stages of CKD. What purpose does the Creatinine serve, however, once someone is on regular Maintenance Hemodialysis? The kidneys have pretty much shut shop, never to open again. What is the point in doing the Creatinine? A test should be done if, based on the result, some action can be taken. If someone's Creatinine goes up by 2 points, is the frequency of dialysis going to be increased? If the Creatinine has gone down by 2 points, are you going to reduce his frequency of dialysis?

Coming to Urea, if you are going to do the pre-HD and post-HD urea and use it to estimate the Kt/V, a measure of adequacy of dialysis, fine. Doing only the pre-HD urea serves no purpose, in my humble, non-medical, only-based-on-common-sense opinion.

Clinics that are concerned about HCV cross-infection often insist on a SGPT, a liver function indicator, every month. That is fine and should be encouraged with the rampant cross-infection with this virus (at least in India) these days.

Calcium and Phosphorus are tested with varying frequency. With the amount of trouble I had with both of these, I would really suggest keeping a tab on these. At least quarterly, if not monthly?

The biggest problem with dialysis in India, as I keep repeating ad nauseam, is that patients have to pay out of pocket for their medical expenses. When that happens, automatically, non-medical factors come into play while deciding the frequency and type of blood tests. At NephroPlus, we are constantly battling this problem. Patients often suspect our intentions when we recommend blood tests for them. I can totally understand and relate to their thinking. So, it is important for patients to be educated and aware enough of their medical condition to be able to take such decisions in their best interests, balancing their financial concerns with their medical ones.