Sunday, June 27, 2010

Why did I ever cut that sim?

Its been more than a month now that I cut the BSNL 3G sim card to fit into my Apple iPad Wifi + 3G. My life has changed since then. In some ways for the better. In some ways for the worse.

Better because my journeys to and from office have become much less boring. With the 3G, I am connected all the time and I can finish off my personal emails, my Facebook and Twitter stuff and going through the feeds I have subscribed to using the awesome Reeder app in the iPad, all on the way.

Even the long waits at the doctor's are now spent infinitely more interestingly. I also have all my medical reports on my iPad so I do a quick recap before getting in so that I am more informed and better prepared for questions like, "Your PTH is fairly high! Has it ever been this high before?" to which my response is something like, "Oh yes doc, it was 1015 in May 2009 after which we started cinacalcet and when it dropped to 72, we stopped cinacalcet!" instead of rummaging through a file full of papers looking for reports that had PTH values and then figuring out if I really had such a high PTH ever - never mind the cinacalcet!

Which brings me to how it has made my life worse. Since then, I have been asked to cut a large number of sims for all and sundry! My boss, his wife, her cousin, his friend, well, you get the picture. They all want me to cut their sim to make their 3G iPads work! And no, they don't want to do it themselves because they don't want to take any chances. Quite understandable because they have got their iPads from the US since it is not yet available in India. And let's face it, cutting a sim is not the most commonly performed task you could do. So, I dread it every time my boss' secretary comes to my room with the sheepish grin proclaiming, "Another one!"

Over email too, I get a number of questions about how to make the damned thing work. If it is not about the BSNL network not being detected, it is about the 3G sign appearing but being unable to browse the internet. Just the other night I found myself sweating when I woke up from a nightmare which had the entire Indian cricket team around my bed with iPads in one hand and a BSNL sim in the other!

To be honest with you, actually, I enjoy doing this. It has given me a lot of clout with folks around me including with my boss! I really enjoy telling people that I actually cut a sim and made it work with an iPad. Sounds really cool, doesn't it?

Saturday, June 26, 2010

In search of the perfect Sugarcane juice

My memories of sugarcane juice go back to when I was a kid. We used to troop to the roadside bandi and there would be this roller machine through which the vendor would pass the sugarcane and the juice would come oozing out. He would then squeeze in some lime and throw in some crushed ice and hand it over to us and we would relish the drink, especially during summer.

We totally stopped indulging however a few years later due to hygiene concerns. There would always be flies hovering around the machine. When the urge became irresistible we would take a bottle of hot water and make the vendor clean his machine with it and then make the juice! This wasn't something you could make at home, after all. You simply had to go to the vendor!

I hadn't had the juice for years until Prasad's multiplex introduced the mechanized version of sugarcane juice a year or so back. They would put the cane into a machine (much more sophisticated than the humble bandiwallah's) and they had a spout through which the juice would come out. The glass was paper made, the lime was squeezed out using a device that made sure the seeds did not go in. They also had flavors like ginger which really made the juice much tastier.

Subsequently many multiplexes introduced the same machine.

However the best sugarcane juice I have had is at Reviva in Jubilee Hills in the lane next to Apollo Hospital. They specialize in sugarcane juice. They have machines different from the ones at the multiplexes. The canes also look much better, fresh and clean. The juice is served with a choice of ginger, lemon and mint flavors. You can add ice cubes if you like.

This juice is really heavenly. You can literally feel the freshness envelope you with every sip you take. For twenty five rupees for a big glass, it surely is a steal!

Thursday, June 24, 2010

Blood leak alarms

I ordered a couple of blood leak alarms from Anza Care some time back and had them delivered to a friend who was coming to India. I should get the alarms in a few days from now.

The alarms are designed to detect any blood that leaks. The way it works is they have a sensor that is connected to an alarm. If any blood touches the sensor, the device sounds an alarm. One sensor is placed close to the site where the needles are inserted into the arm. So, if there is any oozing of blood from the needle site, as it trickles down the arm, it touches the sensor and the alarm sounds so that you wake up and fix whatever is causing the ooze.

The other sensor is placed below the dialyzer. Sometimes, if the dialyzer is defective, if you haven't closed the two covers properly or if you haven't screwed the blood lines on the two sides properly, there is a possibility that blood may leak out of the dialyzer. The sensor will cause the alarm to sound in that case and you can fix the problem.

The sensors from Anza Care were initially designed to help children who wet their bed at night to get rid of this problem. It started being used for home dialysis especially nocturnal to detect blood leaks. Now Anza Care has a specially designed sensors that detect blood more accurately.

This device is really great for nocturnal dialysis as blood leaks, as I have found, can occur and an alarm such as this can prevent a lot of blood loss if detected early enough.

Monday, June 21, 2010

Why the fuss?

For the last few days, I have been seeing a lot of banners all over the city wishing Rahul Gandhi a happy birthday. I have no idea when his birthday is or was and neither do I care. What I am unable to comprehend is the fuss behind this.

The amount of money waited on these banners is ridiculous. And he is not even here for the birthday to see the banners. What then is the purpose behind this? The banners are a sight themselves. A small picture of Rahul Gandhi surrounded by pictures of the people who probably paid for it.

The way people fawn over the Gandhi family is really pathetic. There are other 'first families' in many states too that are worshipped. So, it is not even unique to the Gandhis.

What is the point of putting banners which even Rahul Gandhi is not going to see? Is someone going to take pictures of the banners and send them to him? Is it to please loyalists of the man?

Saturday, June 19, 2010

dialysis.org.in gets a facelift

The website about Dialysis in India (http://dialysis.org.in) has got a facelift.

Well, the content is pretty much the same - not much has changed in dialysis in India anyway!

The website is now hosted on blogger and I was surprised at the ease with which I could make the site look like a regular site as opposed to looking like a blog.

I have also removed the forums. I initially hoped people would use the forums to discuss questions they had about dialysis. Unfortunately, that did not happen. I got more questions on my regular email than I did in the forums.

Drupal is a great tool to create a website such as this. However, clearly for dialysis.org.in, it was overkill.

So, head over to the site and let me know what you think!

Wednesday, June 16, 2010

Badam milk, Apple milk shake et al

Well, these are some of the things folks on dialysis have craved!

To give you a little background, people on dialysis are on a fluid restricted diet. So, anything which is fluid at room temperature is a strict no-no. All told, most people on dialysis are allowed about a liter of fluid in a day. Which is tough.

Now, we are allowed to indulge just a little immediately before dialysis or during the first hour or so of a four hour dialysis session. Like have a cup of cola or an ice cream. I, of course, took this a little too seriously. I made sure I had something really nice EVERY dialysis session.

Nothing wrong with doing it every dialysis session medically. It's just that people aren't used to fussing so much about food and drink. Well, I didn't care! I wanted my fluid!

So I would have a lot of watermelon on the first hour of dialysis or have a bottle of Fanta, sometimes grape juice, sometimes a lime soda. Mostly watermelon though. At that point of time, I was really crazy about watermelon. I would dream that I was sitting on a huge pile of watermelons and having them slice by slice on a hot summer afternoon.

A few days before my transplant, during a dialysis session at Kamineni Hospital, I suddenly craved Apple milk shake. I don't know what got over me. I simply had to have Apple milk shake. Now, apples don't usually make their way into milk shakes. But that did not deter me. I simply had to have Apple milk shake! I called home and said I had to have Apple milk shake. My house was a good forty five minute drive from my dialysis center. A perfectly reasonable answer to give me would have been, "Are you out of your mind?"

But those were the pre transplant days. Heaven knows that a pre transplant patient gets more fussed over than a bridegroom! My ever indulgent parents actually called an uncle to come home, pick up the Apple milk shake which was prepared and then drive down all the way to the hospital to get me my Apple milk shake in time!

Cravings are cravings. There is no rationale there. Cravings on dialysis for different kinds of fluids are similar to the cravings women have when they are pregnant. Remember the craving for Ben and Jerry's something chocolate ice cream that Priety Zinta has in Salaam Namaste?

Tuesday, June 15, 2010

How do you explain nocturnal to someone who thinks dialysis is the problem?

Yesterday, a relative brought his friend whose wife is a chronic diabetic on the verge of getting on to dialysis. The kidney function has been on the decline for the last few months and is currently at around 10%.

They came to me for advice on what to do. They had been switching nephrologists thinking that she hasn't improved. The first thing I told them is to decide on one nephrologist and then stick to him or her unless they have compelling reasons to change. Then I explained to them that dialysis would help her feel better and beyond a point delaying dialysis wasn't advisable. They asked me about PD and HD and what the pros and cons of each were. I explained that to them and also gave them an idea about the costs involved in both modalities.

They asked me what dialysis I was doing. That was the tough part. How do you explain nocturnal to someone who is totally ignorant about dialysis? Most people I talk about this to simply don't get it. Expressions range from complete shock and disbelief - "How the hell, why the hell?" to grave concern - "Do you really need that much dialysis? Poor guy! Must be really bad!" And some of them give up; it's like they don't get it at all. So, they don't continue the discussion!

I try often to explain how kidneys work 24x7 and since dialysis is replacing kidney function, the more you can get, the better. It doesn't cut much ice unfortunately. The central problem is that people look at dialysis as the problem rather then the solution to the problem called kidney failure. It's almost like they're saying, "I have dialysis"!

Monday, June 14, 2010

Bone pain: Lessons learnt

There is a very important lesson to be learnt from the bone pain saga of the last eight months or so.

Nocturnal dialysis is a very different ball game compared to conventional thrice a week in center dialysis. PTH levels are a very important factor for people on dialysis. A lot of dialyzors have something called secondary hyperparathyroidism which is basically an abnormally high parathyroid hormone level in the blood. The body regulates the Calcium level in the blood by secreting this hormone from the parathyroid glands. In people on dialysis, this mechanism of Calcium contol is disturbed and the body starts secreting excess parathyroid hormone.

In nocturnal dialysis, this system is affected by an extra factor. The dialysate. The blood is in contact with the dialysate for about seven to eight hours every day. This is almost a third of the day. This can have a great effect. What happens is that the contents of the dialysate affect the composition of the blood. Excess calcium, for example, in the dialysate can move into the blood. Less calcium in the dialysate can cause calcium to be pulled off from the blood. The body also keeps calcium balanced between the blood and other parts of the body, notably the bones.

The cause for the bone pain was the extremely low calcium in my acid cans which forms my dialysate.

Now coming to the solution. The key to getting all the lost calcium into my bones was increasing the absorption of calcium from the food into the blood and subsequently into the bones. This is achieved by Vitamin D. So, I would need to take Vitamin D supplements. The supplement of choice in most dialyzors is calcitriol which is the active form of Vitamin D, the form that is used directly by the body. The problem with calcitriol is that it suppresses PTH. And a low PTH causes another set of problems - Adynamic Bone Disease being the most common.

That however was not the case with me. I was on a relatively high dose of calcitriol with no suppression of PTH. The reason behind this was the long exposure to the Calcium in the dialysate. The PTH is inversely proportional to the amount of Calcium in the blood. So, the dialysate Calcium was affecting the blood Calcium which in turn was affecting the PTH. This effect was much greater than any suppression caused by the Vitamin D.

This would not usually be the case with conventional dialysis where the exposure to Calcium in the dialysate is much, much less due to the short duration and lesser frequency of dialysis.

The thing with nocturnal dialysis is that it is relatively new and there are very few people on this modality. As a result, a lot of the decisions have to be made by the doctors more out of common sense than by relying on any systematic and published studies.

Saturday, June 12, 2010

Its official: the bone pain is on its way out!

Yes, finally! I am so relieved! The bone pain which perplexed the doctors, from India, the US and Australia is finally on its way out. I honestly had given up hope if it ever being resolved. I thought I would have to live with this forever. And you can't really blame for thinking that way. I did all the tests suggested by everyone. Nothing of significance came in any of them. We tried so many things. Nothing was working.

Eventually, my nephrologist, Dr. Girish Narayen sent me to meet with an endocrinologist, Dr. Rakesh Sahay who is a professor of endocrinology at Osmania Medical College. Dr. Sahay worked on first principles. He noted that my PTH was not normal but it was responding to Calcium like it should. So, we don't really need to worry about PTH suppression on giving Calcitriol. I was not convinced. The nephrologists I discussed this with were also skeptical. But we decided to try it for a week. Calcitriol and calcirol would both help with the bin pain, he felt. We tried it for a week and there was no suppression of PTH.

We continued the Calcitriol - 0.25 mcg twice a day and Calcirol granules - 1 sachet every week. Calcitriol is the active form of Vitamin D3 - 1 alpha 25 dihydroxy cholecalciferol - the form that the body directly uses, the form that the Vitamin D obtained by the body from the food and sunlight is converted to by the kidneys. Calcirol is the inactive form of Vitamin D3 - 25 hydroxy cholecalciferol - the one that the body obtains from sunlight and food.

It's been about six weeks since I have been taking this and my PTH is stable - around 150 pg/ml and my bone pain has reduced significantly.

These are times when you appreciate the knowledge, experience and the thinking of doctors like Dr. Girish Narayen for sending me to the right doctor and of course, the brilliant Dr. Rakesh Sahay for nailing down the problem and relying on simple reasoning to arrive at the correct diagnosis. I was quite profuse in my thanking when I met with Dr. Sahay a few days back to report the successful treatment. He said, "We didn't do anything great!" Hallmark of genius? Whatever!

Friday, June 11, 2010

An Indian CKD registry now exists

I discovered yesterday that an Indian CKD registry exists, thanks to Dr. John Agar, who posted about his presentations at the Asia Pacific Congress of Nephrology at Seoul recently.

So, there is an Indian CKD registry after all. It has a website, poorly designed but with some very useful statistics at http://www.ckdri.org.

Some interesting statistics from the registry:

- Mean age of the patient with CKD is about 50 years
- 70.2% of the CDK population is male
- Diabetic Nephropathy is the leading cause of CKD
- 18.3% of the CKD population is on hemodialysis
- 2.74% is on Peritoneal Dialysis

The registry currently involves 154 centers around the country, there are many more. The next steps are to involve more centers to get a more accurate picture. The registry is going to be expanded and is going to be used for advocacy. This is really heartening to know.

The first step to any change in the way CKD is handled in India is a registry. Nothing can be done without having accurate numbers to back up your claims. We knew for long that diabetes was a strong indicator for kidney disease. Now we have numbers to back up that "knowledge".

I really hope the registry achieves its desired objectives.

Tuesday, June 8, 2010

Complete independence is the only way out

Currently I dialyse at home with the help of a tech. Though he is really good at his work and as a person too, I do not like to depend on him. For example, this Sunday he wants to go for a cricket match and asked me not to plan for dialysis on Sunday. The moment he said this, I got all worked up. I started thinking about Sunday and what it will bring.

Now it is a perfectly reasonable request to be allowed a day off. Especially since it is not a part of his agreed duties. But from my point of view, it is worrying. I love the freedom to drink as much as I want on Sundays knowing that I am going to get a session of dialysis that night. Yes, I am on daily nocturnal and shouldn't have to worry about fluids. But then, that's me. I still think all the time about fluids. Yes, maybe my mind is sick. I have no idea.

Anyway, returning to the topic, I strongly believe that to get the maximum benefit out of daily home hemodialysis, it is important that you are as independent as possible. Depending on someone just does not give you all the benefits. You have to still work around their timings and schedule and sometimes their whims.

I am doing a whole lot making home hemo work. Keeping track of the inventory, ordering in time, making sure supplies get here in time and most of all the treatment itself. Just last night, after I started the session myself, I was lying on my bed and looking at the dialysis circuit and it struck me that here was a whole lot of my blood flowing through those lines and through the venous chamber gushing down the venous line after passing through the artificial kidney returning to my body! It was a humbling and scary feeling. Yes, there was a great machine to try and make sure any abnormal condition sets off an alarm. Nevertheless, it is risky.

So, here I am taking all this risk and despite all this, if I am not completely happy, what's the point?

The only solution is complete independence. Where I can dialyse or choose not to as I please without any dependence on anyone. I have started on this path. I start completely by myself. I do about 75% of the closing by myself. There are only certain tricky parts of the closing that I need to figure out. I am learning. I may not be done by Sunday. But I will be there some day.

Tuesday, June 1, 2010

Are all college dropouts successful?

I have, twice today, come across attempts to belittle getting a graduate degree. 

The first was in an advertisement on radio for an institute that trains girls to become air-hostesses. There is this girl who compares herself to MBAs and says that she is getting Rs. 70,000 per month after class 12 and questions condescendingly how much an MBA gets.

The second was a more serious attempt by Allu Sirish, son of producer Allu Arvind and brother of actor Allu Arjun who linked to his blog post titled "Billionaire college drop-outs" where he points out how Bill Gates, Steve Jobs and Micheal Dell among others had dropped out of college and gone on to become billionaires. 

What these people forget is the vast majority of people who have succeeded in life who have a college degree. Now, they may not have succeeded solely due to their college degree but to argue that a college degree is absolutely useless is plain ridiculous.

Whether you succeed or not depends on a lot of factors, the indescribable and completely illogical thing called luck being one of them. To say it is ok not to go through college and give these examples and say you will succeed irrespective is not right.

A college degree may not give you the best education in terms of subject matter (again this depends on the college you go to and the teachers you have). However, education is not only about the things you learn from text books. It is a lot about how to handle situations, how to deal with pressure, deadlines and the very important aspect of dealing with different kinds of people. I have always found my classroom to be a microcosm of the world outside. You find one of every kind.

A degree also gives you a backup. In case someone wants to pursue his or her dream of becoming an air-hostess or a film producer, he or she is free to do so even after completing his graduation, right? Is there are a condition in any field that says 'Graduates are not permitted'? In case things don't work out and you are not able to achieve your dream, you at least have a degree to back you up and get you a decent living. 

Some good signs...

- One person has confirmed to me that my walking is much sharper than a few weeks back
- I am able to walk without the rubber slippers I needed to walk around in the house
- I am able to walk down a flight of steps by putting one foot on each step rather than two
- I am able do the free style in the swimming pool without having pain in my shoulders
- I am able to get out of the swimming pool one foot on one step rather than two
- I am able to get up from a chair with much less effort than before

What does all this indicate?

Well, I am not saying anything yet. But the Vitamin D supplements - both active and inactive - that Dr. Rakesh Sahay, endocrinologist, put me on about a month back are definitely helping. A problem I had for about seven months and was convinced I would have to live with for the rest of my life may just be on its way out.

Keeping my fingers crossed!