Monday, January 30, 2012

Hopefully, some day...


A video of a young little boy diagnosed with Atypical Hemolytic Uremic Syndrome, the disease that I have, being given the wonder drug, Eculizumab and being prevented from going into permanent kidney damage. The drug has also shown dramatic results in transplants as well. So, there's hope for me...

Sunday, January 29, 2012

Here's to the kidney donors!

(Thanks Shree for the suggestion!)


I received a transplant in November 1998. My mother donated a kidney to me. In my almost fifteen years with kidney disease, I have seen many people getting transplants. I cannot remember any failed transplants except mine.

Nephrology has come a long way when it comes to better transplant success rates. Most transplants today work for a few years at least. Undoubtedly, transplants offer the best outcomes and quality of life compared to other renal replacement therapies.

Which brings me to the donors. The selfless act of donating an organ to someone is probably the highest form of altruism the human race knows. It surpasses all other forms of generosity. Many people can donate money. Donating an organ requires much more than just willingness. It requires tremendous courage and limitless love for the person donating.

(Altruistic donation is something that I cannot even begin to comprehend. To donate a kidney to someone you know, care for and love is great but to donate a kidney to a stranger whom you have never met and you never ever will is something that is beyond me. I simply cannot understand that. To me that is beyond humanity. It is truly saintly. Yet, there are an increasing number of people doing that.)

Coming to my mother, from the day we began discussing a transplant, she was very clear that she would donate. My father was ruled out because he is diabetic. My brother also was very keen on donating. Eventually, the nephrologist decided it would be my mother because my brother was too young.


My parents, brothers and I

You can read about the whole story of the transplant here.

My mother, as would anyone about to undergo such a major surgery, was probably very worried. She did not show it though. We went through a battery of tests to determine whether she was a possible match. It turned out that she was. Donors must go through a lot of emotional upheaval. You are doing something so counter-intuitive. Your sub-conscious must ask you, "Whatever the hell am I undergoing such a major surgery for? I am ok right?" But then the heart takes over and says, "I just have to do this! I cannot see him/her suffer any more!"

One the one hand is the trauma of getting under the knife. On the other hand is the promise of liberation from the dreaded dialysis. It must be one hell of a fight! Oh, life!

Surgery day came and went. There were a few hiccups but in the end, I had a functioning kidney. My mother has been totally all right with one kidney. We can all survive with a single kidney. She has never had any medical issue because of having one kidney.

Whatever the outcome, the act of donation and the bravery that went along with it never changes. Though my transplant failed after eleven days with the new kidney, I can never forget what my mother did for me. Well, mothers are like that. Among all the transplants I have seen, most of the donors have been mothers. Yet, as it is in my case, every recipient feels this sense of eternal obligation to their mother. Like she is the best mother in the world. I guess we are all correct!

Thursday, January 26, 2012

Announcing Aashayein 2012

Aashayein is back!

Aashayein, the one day exclusive free event for dialysis patients is back. After creating quite a sensation last year, the NephroPlus sponsored Hyderabad Kidney Foundation is organizing the second edition of the event this year on Sunday, 19th February, 2012 at 9:00 a.m. The event is being held at the same venue as last year, Hotel Fortune Select Manohar, Begumpet, Hyderabad.

The event will have educational talks by nephrologists, urologists, dietitians and patients. There will also be a whole lot of fun and games exclusively for dialysis patients. There will be an elaborate lunch prepared as per the dialysis patient diet. There will also be a whole lot of goodies for dialysis patients which will include erythropoietin injections.

NephroPlus is the chief sponsor and the title sponsor of the event. Biocon Nephrology and Nipro are the other main sponsors.



Seats are limited and last year, the registrations had to be closed a few days prior to the event. So, I would suggest that you register early enough. To register, please visit the Hyderabad Kidney Foundation website or call 8008-964-888.


Wednesday, January 25, 2012

My Lawn project - Part 2

Yesterday, I wrote about how I did up my lawn initially and how it finally dried up.

For a long time, there was a small patch of grass, dried up, almost anemic, that remained to one side of the lawn. Every morning as I sipped my steaming hot cup of Darjeeling tea, I would look sadly, helplessly at the lawn and wonder when I would do it up again.

At one point, I almost committed a blunder. I almost decided to cover the area with stone. "Limestone!", my granite expert brother suggested. We actually went to a shop and selected the stone, fixed up the price and asked them to send the marker to measure the area. Luckily, the marker never bothered to show up and I never bothered to follow up. My heart was wedded to the lawn.

A few days back, in an extraordinary moment of determination, I pulled up justdial.com and keyed in "carpet grass" for my city. A bunch of numbers were sent to my mobile number and email address in a second. I called  couple of them, picked one that seemed most professional, checked the price and asked him to send 120 square feet of carpet grass. I asked him to send a variety that did not need sunlight. He said that would be shade grass and would come in a sack and they would need to plant the blades and we would need to wait for 45 days.

Nooooooooo..... not again!

I asked him to send the carpet grass. If the parts of the lawn that did not receive sun light dried up, I could always order a few blocks of the carpet grass and replace those areas, I reasoned to myself. All this happened on a Friday. I asked him to have this done on Sunday. I would be at home. I could supervise this myself.

The grass arrived Saturday evening. I was excited. I also ordered the other things that would be needed - vermi compost and neem cake.

Sunday came. 9:30 a.m. No sign of the maali. I called him. He said there was a strike and they would not come! I asked him why he did not inform me that he was not planning to come. He did not understand that question! Inform? For what?

I let it rest. Monday it would be.

After a couple of phone calls on Monday morning, the maistry arrived with a maali and maalin in tow. He asked me to get a trolley of red sand. I had that arranged. The maistry gave instructions to the team on what had to be done and left. The duo got to work. First they cleaned the area thoroughly and removed the old patch of grass. They also cut the lower branches of the palms so that light could enter the area.



Then they started laying the grass, one slab at a time. Each slab measured 2 feet by 1 foot.



Here is the finished lawn. The lines that you see between slabs should gradually disappear.


This is a shot of the lawn from inside.


Overall, I am very happy with the lawn. The maistry sort of dampened my enthusiasm a bit by asking me not to step on it for a few days. The number of days varied from 4 to 15 at different stages in the conversation. I am going to average it out to 7.

The lawn will require a lot of work - watering twice a day, mowing etc. But this time I am determined to make it work!

Tuesday, January 24, 2012

My Lawn project - Part 1


In our house, we have space for a lawn. It is a small little private space hidden from prying eyes on the road, tucked away at the back of the house. When we moved in, we were all gung-ho about the lawn. On the advice of the architect, we planted a Silver Oak at one corner. Slowly, however, we got sucked into our busy schedules and nothing was done about the lawn. It lay just like that -  a brown piece of land awaiting some love. The Silver Oak was a lonely crusader in the battle for green.

A few years into my kidney disease, I developed a green thumb - not sure if that has anything to do with the kidney disease though! I then went and got hold of a maali - a gardener and got him to do up the lawn. He brought grass in a bag and dexterously planted the blades at small distances from each other. It did not make a great visual but I was promised by him that in a month or two we would have a beautiful lawn.

I religiously would water the lawn every morning and wait. "Ah, look there, there's a green patch coming up", I would exclaim every now and then. In about two months we had a functional lawn. In the meantime I had also brought some potted plants and placed them at the front of my house. I also planted some Arecka palms at one end.

Lawns can be demanding. Our lawn quickly grew wild and needed urgent trimming. I hired a gardener - a young guy, Veerappa - to come every Sunday and do the mowing and the necessary maintenance for the potted plants. This gardener was a dedicated soul. Clearly, he enjoyed his work. He loved plants and would caringly look after them. For a few years, things continued well. I was very proud of my lawn.

At Veerappa's level however, passion is rarely enough to feed hungry stomachs. He became a traffic policeman and told me he would no longer be able to look after my garden.

I looked around for replacements. Spread the word among everyone who worked for us, the security guy of the neighbours, anyone who might know a maali. After all, Naukri.com has no section for maalis!

We did get a few applicants. We even hired a couple of people. Their quality however was pathetic. All they wanted was money. No passion, no commitment. I quickly got angry and fired them.

So, that was it. The lawn received no attention. All of us were busy with our lives. Who had time to look after a lawn? It quickly grew wild and unwieldy. No one dared venture into it. Slowly, the Arecka palms continued to grow however. They totally blocked out the sunlight from the lawn.

Due to the lack of sunlight, the lawn dried up. And that was the end of the story.

Until, of course, Part 2 happened!

Thursday, January 19, 2012

Sapnon ki rajdhani? The problem with doing the lyrics after the music


I really loved A R Rahman's music for 'Ye maya chesaave'. The music was redone for the Hindi version 'Ek Deewana Tha'. There is this song - 'Phoolon jaisi ladki' the original for which was the brilliant 'Kundana Bomma'. The music is exactly the same as the original. These are the lyrics for the first part of the Hindi version:

Aahaan... hai yeh kya?
Aankhein..
Aankhein yeh aankhein
Saagar se gehri yeh aankhien (hey!)
Jhookti (hey!)
Uth.ti (hey!)
Sharmeeli se aankhien, yeh aankhien
Sapno ki rajdhani
Saare... jugnu... taare
Inse hi jagmagana seekhe
Oh ho ho..


I don't understand Telugu so I am not sure if these words are a direct translation of the original. But honestly, these lyrics are pathetic. I make no claims to a poetic temperament but I can tell this is plain bad poetry. Especially the phrase "Sapnon ki rajdhani"!

Javed Akhtar, the lyricist, could definitely have done better. In fact, the album is touted as "An A. R. Rahman and Javed Akhtar musical"!

This is what typically happens when the lyrics are done after the music. And especially so when the music is redone in another language. So, while we see good lyrics for original music like 'Rockstar', we see disasters like this.

Monday, January 16, 2012

Do you keep your investigation reports electronically?

When you're on dialysis, within a few months, you could build up a mountain full of investigation reports. Referring back to check how much your hemoglobin was a few months back could be an impossible task. So, here's a handy tip: start recording your investigation values on your computer!

Since you're reading this, you obviously use a computer. So, make better use of your computer. Record all your investigations on it. You could either use Excel or even better - a Google Doc spreadsheet so that you can access it from anywhere. There was a tool called Google Health which was discontinued on January 1 this year. There are other similar tools like Microsoft Health Vault and so on but I am not really sure how they are. Excel or a Google Spreadsheet are good enough for my needs. So, I will stick to that.

The next question is how do we maintain the vast range of blood tests that we usually get done?

I put the dates in the rows and the test names in the columns. But with the large number of tests, the sheet could become unreadable. So, I split the tests into the groups that are usually used - Complete Blood Picture (which includes things like Hemoglobin, RBC, WBC, platelets etc.), Biochemistry (Urea, Creatinine, Potassium, Calcium, Phosphorus etc.), Liver Function Tests (SGPT, SGOT etc.) and put each group in a single sheet. I also have a sheet for Others which includes all other tests that are not done frequently. That way all my blood tests will come into 5-6 sheets without any sheet becoming unreadable.

Now, looking for an older blood test value becomes very easy. Since all these tests will be entered in chronological order, you can also see trends and do cool looking graphs!

If you have an iPad, you could also sync this file with it and carry it along with you when you go to your nephrologist on your monthly review. And if he asks you, "Has your hemoglobin been this high ever?", you can quickly open that file and scan the sheet in a second and tell him, "No, doctor, never!" and then he might actually reduce your erythropoietin dose! So, moving to the electronic form of investigation record keeping can actually save you money!!!

(If you want a copy of the file I keep - without the data, simply the format - so that you can start entering your values immediately, send me an email and I will send the file to you.)

Sunday, January 15, 2012

Three A. R. Rahman masterpieces

Yes. Undoubtedly, A. R. Rahman is a genius. No two ways about it. His music is something else. His songs have an enchanting effect. Though they can take some time to grow on you, once you are hooked, you can never have enough.

Though many of Rahman's songs are amazing, I find that there are small pieces tucked away inside some songs that are the real gems. Here are three of my all time favorite pieces from his songs.

1. Kehna hi kya... (Bombay): Check out the part from 1:43 to 2:20.


2. Jiya jale... (Dil se): Check out the part from 2:55 to 3:30


3. Naadaan Parinday... (Rockstar): See from 4:06 to 4:32


Saturday, January 14, 2012

Chennai Diary

Last minute thingie

It was a last minute trip. Oh, how I hate these last minute trips! You always get high fares and you don't get the timings you want. And you invariably forget something. Honestly, I am quite a fussy guy. I need my stuff around me and feel quite lost without some of my things.

Anyway, I did not have a choice. The meeting had to happen. So, within a few hours of crystallizing the plan in my head, I found myself in a cab driven by an oblivious cabbie on the way to the Shamshabad Airport en route to Chennai.

Chennai

I find that people have extreme feelings for Chennai. Some love the city to the core. I know people who willingly give up high paying jobs just so they can settle down in Chennai. They simply swear by the city! And then there are the rest of them. They loathe the city. Everything about it. The food, the people, the place.

I am neutral. I have no problems with the people or the place. I love the food here (more about this in a bit). I was warned about the airport even though this was not the first time I had been there. I was told that a whole swarm of taxi drivers would accost me and ask me to take their taxi. No such thing happened because I took a pre-paid taxi. I guess it is an unfair bias after all.

Highway Robbery at Lunch

I reached my hotel at around 12 noon and checked in. I had a meeting scheduled at 1:30. That gave me enough time for lunch. I checked with the room boy where I could get a decent South Indian Thali. He told me to go to the Malgudi restaurant on the Ground Floor. I went there with high expectations. This was Chennai after all - the best place for a South Indian Thali. I asked for the menu. This turned out to be a branch of the Malgudi restaurant at Hyderabad - only much pricier. Disappointing! I looked for the Thali. All I got was some platters. Guess how much they were priced at? The cheapest was Rs. 1,300! WTF??? Thirteen hundred bucks for a thali?

I decided to go for a dosa with some Karnataka-origin curry (I forget the name). The dosa was good. I took one spoon of the curry and left the rest. The bill came to Rs. 641 - for a dosa and one spoon of curry!

There are idis and there are idlis

Many people in Andhra Pradesh are used to a variant of the idli rather than the idli itself. Most hotels do not use rice while making the idlis. They use rava. This makes good idlis too but the original is something else. In Chennai and the entire state of Tamil Nadu, the rice idli is the default. There is a difference. The rice idli, though a bit heavier to feel, is much lighter and better to taste.

When I come to Chennai, I always make it a point to visit the Murugan Idli Shop. They started off with one outlet in T Nagar, close to Vani Mahal and have now expanded to 15 outlets including 2 in Singapore! They serve out-of-the-world rice idlis. The other fare is also good. I was told not to miss the uttapam. I tried it. Good. But not as good as the idlis.



The important thing to know is what the best thing about a place is and then focus only on that. When I go to Poorna Tiffins in Hyderabad, I only eat idlis. Nothing else. So (I must) let it be with Murugan.

On an interesting note, a relative of mine, also an idli aficionado, suggested I try the Idli Vilas, a new joint opened right outside Savera Hotel, where I was staying. I kept space for a plate of idli and checked Idli Vilas on my way back from Murugan. The idli was good. But not as good as Murugan.

All in all, it was a great trip. Thanks in no small measure to the idlis!

(This post is inspired by a similar series that appears on the last page of 'Outlook' - an Indian weekly.)

Friday, January 13, 2012

The oblivious cabbie


I was on a cab this morning. After a few minutes, the cab driver struck up a conversation. He asked me what I did in Hyderabad. I told him that I work in a dialysis center. (He spoke in Hindi. I am translating here.) "Hmmm, dialysis? Kidney stones related huh?" I explained that kidney stones were different and that dialysis had to be done when someone's kidneys failed. Dialysis was needed to clean the blood and remove excess toxins and water.

I wondered how oblivious this guy was to what his kidneys did. They worked every instant of the day, tirelessly cleaning the blood. And he was not even aware of their existence. Well, to be fair to him, we are all like that. I had no clue that there was a word like 'dialysis' until I had to get onto it.

"There are many dialysis centers in Hyderabad, na?"

"Yes, most big hospitals have one. But ours are different. We do only dialysis."

"How much does it cost?"

"Roughly Rs. 1,500."

"Oh, that's it? Quite cheap!"

That was one thing that dialysis has never been accused of! "Quite cheap"! Everyone complains about the price of dialysis. You have got your frequency wrong, dear, I mentally addressed him.

"Thrice a week"

He turned his head towards me in disbelief. "Thrice a week?"

I gestured to him to turn his head to the front. He was driving, after all!

"So, Rs. 4,500 a week?!"

"Yes"

"I thought it just had to be done once!"

"Oh, how I wish that were true!", I thought to myself!

I refrained from telling him that I was on dialysis. I wanted to get to my destination.

Tuesday, January 10, 2012

PD first


I have a huge bias for PD and my six years on PD were my best among those with CKD. PD, I feel offers the best quality of life among all dialysis modalities.  The few diet and fluid restrictions, the possibility of unhindered travel and not having to go to the hospital thrice a week all make this modality very appealing.

The nephrologist community has historically been step-motherly towards this therapy. There are multiple reasons for this. Some of these are due to the doctors, some due to the patients. From a patient's perspective, introducing PD first rather than hemodialysis allows patients to settle into a therapy that is less violent, offers more independence and fewer problems. The switch to hemodialysis, from then on, would pose the same challenges as does the switch to PD from hemodialysis currently.

Dr. Kenar Jhaveri of the famous Nephron Power blog interviewed Dr. Arshia Ghaffari from the Keck School of Medicine for eAJKD, the oficial blog of AJKD. Dr. Ghaffari recently concluded a study where PD was presented as an 'urgent start' modality - where PD is the dialysis modality used without any prior preparation for dialysis. The results were great.

This initiative is very welcome. PD as a successful first line of therapy and that too without any prior preparation should at the very least, reduce an excuse from the list of excuses for not recommending this modality.

Monday, January 9, 2012

Fresenius must explain

In a very concerning post, Dr. Peter Laird says, "The jury is still out on whether FMC bought these companies to expand home dialysis options or instead to stifle competition with their own dialysis oligarchy. The only proof of the former will be the actual release of sorbent technology for clinical testing and rapid penetration of the home dialysis market. Until then, all we can ask is where have they gone for we know that the good, they die young."

'These companies' refers to Renal Solutions and XCorporeal, both of which had portable home hemodialysis machines, one almost ready to market and the other ready for clinical trials. Fresenius Medical Care bought both these companies. We have not heard anything about these machines since the acquisitions.

I will really be happy if Fresenius proves us all wrong and releases home hemodialysis solutions better and more accessible than those available currently. I have been using a Fresenius machine for almost six years now and have received excellent support from the company on everything. So, I really have no personal reason to complain about them.

However, this is a serious concern and it would be great if Fresenius explained where they are with these machines or a suitable portable home hemodialysis solution. I somehow don't believe that home hemodialysis will ever cannibalize in-center dialysis all that much. Very few people will ever switch to home hemo despite all the advantages.

Wednesday, January 4, 2012

Why the 'Kt/V deception' is a good start for India

Dr. Peter Laird, in a great post at his blog, "HemoDoc, From Doctor to Patient", says "Each month, dialysis patients anxiously await the results of blood tests. Each month, the renal staff and physicians pronounce their dialysis adequate by a magical wand without dimensions called the Kt/V. Yet, each month, these same patients die at a rate 2.5 times that of patients undergoing chronic hemodialysis in Japan."

Entirely true Dr. Laird. This is entirely true for the United States and countries that are using at least Kt/V to determine adequacy. The main argument against Kt/V is that it uses urea as the molecule to determine clearance and from this, the measure of adequacy.

While urea is one of the molecules being removed by dialysis, it is by no means, a representative molecule that actually determines that the dialysis is adequate. There are a number of other molecules that dialysis removes and which have a different rate of removal than urea. Urea is a much smaller molecule than many other molecules that are being removed and is therefore, removed much more easily than these other molecules. So, to assume that if you've removed enough urea, you have had adequate dialysis is to be too optimistic since dialysis is actually much more than removing only urea.

There are a number of other measures that have been suggested by a number of different experts. Many of them are much better than Kt/V to determine adequacy. These are all excellent alternatives to Kt/V. Not for India however.

Let me explain.

Most of these indices require a host of blood tests to be done every month or every six weeks. Take Dr. John Agar's Good Dialysis Index. It is one of the best that I have seen among the newer adequacy measures. However, it needs the Serum Iron, Transferrin Saturation, Serum Calcium, Serum Phosphorus, Serum PTH Intact, Albumin and C Reactive Protein to be checked every six weeks.

Yes, I can almost hear all Indian readers of this post laugh out loud!

Many patients resist any blood tests to be done every month. Some will agree, but only after a howl of protest. I don't blame them. Most countries that get these kinds of blood tests done are from countries where the patients do not have to pay for them out of pocket. So, they would hardly have a problem with that. In India, where costs are the biggest problem since most patients pay out of pocket, how can we expect patients to get the battery of tests required to be able to calculate these indices?

Coming back to Kt/V. Yes, it is a flawed measure. But it is a measure nevertheless. In fact what the experts ask us to do (including Dr. John Agar) is to not rely only on the Kt/V. But they would never say do not measure the Kt/V.

When I joined the dialysis industry as a professional and started looking at dialysis from the blunt side of the needle rather than the sharp side I was used to all these years, I found a shockingly great apathy for adequacy. No one did Kt/V! It was mostly some theoretical concept in the text books. Of course, the industry had a reasonable argument to back this. Patients did not want to do tests. Patients did not want to increase their monthly financial burden.

But a start must be made somewhere. We need to move towards adequate dialysis for patients. To be able to do that we must, first of all, know for sure,  what kind of dialysis they are getting. I find that Kt/V is a good start. Gradually we must combine it with other measures to come up with our own index. But Kt/V must be measured. It will at least tell us those patients in whom even the urea is not being adequately removed and I suspect that there must be quite a bunch.

Tuesday, January 3, 2012

Two nights on, one night off?

That is Bill Peckham's dialysis regimen. What it basically means is you dialyze two nights and then take the next night off. And then you dialyze the next two nights and take the next night off. And so on. This of course applies only to those on nocturnal dialysis.

I started off my nocturnal dialysis by dialyzing six nights a week. Sundays were always off. Those, however, were the days of huge fluid weight gains and there would also be days when I put on 4-5 kgs between two consecutive days - that is 4-5 liters of fluid consumed in less than 16 hours! Sundays would become difficult then since I would have to consciously restrict my fluid intake. And I absolutely loathed that.

So, I decided to do true daily nocturnal dialysis. No Sunday off as well. On Sundays, though, since the technician would not come, I would do everything from start to finish. This got to me quickly and reverted to six nights a week.

Recently, I started getting fed up with dialysis. I decided to take an extra night off. So, I took Thursdays off in addition to Sundays.

Now I find I find it difficult to do more than two nights in a row. The quality of my sleep on dialysis is not great. So, more than two nights on dialysis is a little frustrating. I am thinking I should also switch to Bill's 'two nights on, one night off' regiment. Heck, if it's good enough for Bill, it's good enough for me!

Sunday, January 1, 2012

How Facebook's tagging ruined my new year's eve

So there I was happily partying away last night when something terrible happened.

A friend tagged me on his Facebook picture. This wasn't a real picture as in 'real picture' but a collage of motley pictures which did not even have me in them. But my enterprising friend decide he wanted to show off his artwork (done on Photoshop?) to the rest of the world. So, he uploaded the pic to Facebook and tagged every single friend on his Facebook to it.

Chaos followed.

Now it was New Year's eve. So, many enterprising friends of this friend of mine decided they have to appreciate my friend's creative collaging skills. So, many of them started commenting on them. Now, because I, unfortunately, was also tagged in that pic that did not even have me, started receiving an email every time anyone commented on that picture! And I had my phone with me on which I would get every email and I also had the Facebook app with push notifications enabled on it so every time someone commented on that I got a separate notification as well.

By 11:30 p.m., I had received like a gazillion emails and another gazillion notifications. It was New Year's Eve, after all and the festive spirit was at its peak.

I couldn't take it any longer. I ran to my laptop and launched Facebook on the browser and went to the pic and 'unsubscribed' to the pic. I felt relieved.

But it was not to be. The emails and the notifications continued.

This morning I went back to the pic on Facebook and realized that because I was tagged I would receive the comments irrespective of whether I was subscribed or not. Then I had an aha moment.

I had to remove the tag. 'Na rahega tag, na bajenge comments.'

I went and successfully de-tagged myself from that pic. Peace ensued.

Happy new year to you!