Friday, September 30, 2011

The 48 hour birthday

I celebrated my 26th birthday on the 28th. Yes, I finally started growing. I was stuck at 25 for quite a while. After a point, you have no choice but to accept your age. Gracefully. So let it be with Kamal.

So, I went to sleep the previous night. Last year, the NephroPlus team had come home in the middle of the night and surprised me like hell. There was no way they were going to do it again. I mean, who does these kinds of things every year?! I was on dialysis. I fell asleep after a while.

Suddenly the light came on. And there they were. The NephroPlus team trooping in one by one. Even Sara and Tabassum, former NephroPlus team mates had come! They brought a cake that I cut while on dialysis. They brought a beautiful clock and some cards. The best part was the videos that they recorded of the patients that dialyze at NephroPlus wishing me. Those were very sweet. There were also videos of the NephroPlus team that couldn't make it at night. I was really touched by Dr. S. Krishnan's video. He is a senior nephrologist of the city. This entire effort was co-ordinated by Sandeep Gudibanda, fellow director at NephroPlus. I will never forget what he did for me that night.

I couldn't sleep for almost two hours after they left.

The next morning, I went to - where else - Poorna Tiffins, had my fill of Idlis with ghee. After this I went to the Banjara Hills center where the team had decorated a part of the center with balloons and confetti and we had the cake cutting.

After this, A Srinivas suddenly called me and suggested that we have lunch together. Sure, I said. When I reached the restaurant, I was surprised to see some other really good friends there. We had a great lunch! That evening I had dinner at my favorite restaurant with my family.

At the dinner, I was shown a video by my brother done by Dinesh, Kamal Kumar and their families. These are my friends from engineering college. That video was also so beautiful! Thanks all of you!

I thought I was done. Nope. Not so soon. The East Marredpally center team complained that they did not get a chance to do the cake cutting with me. So, next morning, I went to the East Marredpally center and we had another round of cake cutting and general hungama.

And now a word about Facebook. Last year, I had this crazy notion that I shouldn't display my birthday on Facebook. Those who remembered my birthday would wish me, I thought. I was so wrong! I am no great celebrity! This year I realized that and changed the settings to show my birthdate. I was overwhelmed by the wishes. Almost 70 people wished me. Yes, it takes very little effort but the feeling that so many people wished me was really touching. People who I have talked to last close to twenty years back. They were wishing me! This is possible only on something like Facebook.

This birthday was probably my best ever. So much love and affection. I was moved beyond imagination. Thanks everyone who did this!

Tuesday, September 27, 2011

There is a solution for Restless Legs Syndrome

Many dialysis patients have something called "Restless Legs Syndrome". There is an irresistible urge to shake or move the legs and the inability to sit or lie still. This was my biggest problem many years back.

Many patients do not know how to describe this feeling. Many doctors don't know about it either. But it is a common problem. So, what happens is, let's say you're sitting (maybe at home or in a car). After a few minutes, you just have to get up and walk briskly. You just cannot sit. Or at night, when you are sleeping, suddenly you just have to shake your legs vigorously. You cannot sleep. All these are symptoms of Restless Legs Syndrome.

Remember, you are not alone. this is a common side effect of kidneys not working properly.

Luckily for us, there is a solution. If you are facing these symptoms, you should talk to your nephrologist about Gabapentin. Describe the symptoms and ask if you can use Gabapentin. It is available in doses of 100 mg and 300 mg as Neurontin in the US and Gabantin in India. Definitely do not take it without consulting your nephrologist who will assess the severity of your symptoms and decide the dosage and frequency.

This drug actually saved me from a lot of problems. It rid me of the symptoms in days.

Monday, September 26, 2011

Informative brochure released by the aHUS Foundation

The atypical HUS Foundation has just released a very informative brochure about the disease. The brochure can be downloaded from here.

The brochure explains the disease in simple terms and also talks about the types and the treatment options. It also has some stories of people affected by this disease. (Hint: See Page 5 of the brochure!)

It has been put together by the Foundation for Children with Atypical HUS, a group of people whose children have been affected by this disease. It also has some adults (like me) who have aHUS.

This is a very rare disease and some 300 children and a handful of adults in the US are expected to have it. It requires a very dedicated team to do any kind of research on diseases such as this because there is hardly any bang for the buck, so to speak. So, only the very academically inclined who really have a deep interest in this class of diseases or the underlying phenomena get into this.

For diseases that are more 'mainstream', any work by researchers yields a lot of benefits simply because of the volume of patients that would benefit from the work.

It is through this foundation that patients such as me can come to know about all that's happening in this small world of aHUS.

Sunday, September 25, 2011

How RSS feeds dry up our lives

I use Google Reader to track all the news I am interested in on different subjects for example, aHUS, dialysis, Apple etc. And I use the Reader app on my iPad to check the feeds and go through the stories. I also use the same mechanism to read the blogs I follow. This method however, strips out the 'soul' of the blogs - the backgrounds, sometimes the images and videos and the comments.

This is all right for news articles but not for blogs. Blogs must be read on the original site, not using a feed reader. Is there a solution for this? I had written something similar a while back here and I haven't found a solution for this yet.

Basically all I want is an app that checks the blogs I follow if there are any new posts and then show only those blogs in their original interface - exactly like they would appear if I visited the blog website.

Any suggestions?

Saturday, September 24, 2011

FDA approves Soliris (Eculizumab) for atypical HUS

In a significant development the FDA in the USA approved Soliris (Eculizumab) for use in atypical Hemolytic Uremic Syndrome.

To those saying, "Huh?": Read on!

Atypical Hemolytic Uremic Syndrome (aHUS) is a rare disease that afflicts mainly children and a few adults. It causes kidney failure in a lot of cases. I have that disease and it is the cause of my kidney failure.

For years, there was no treatment for aHUS. Plasmapheresis was the only thing that could be tried and that too with varying success.

Eculizumab, manufactured by Alexion Pharmaceuticals as Soliris is an extremely promising drug that has been found to be useful in the treatment of this disease. For those just diagnosed with it, treatment with this drug can prevent them for going into kidney failure to begin with.

For those like me whose kidneys have been affected by this disease, this drug offers hope of a successful transplant. Without this drug, the chances of a successful transplant for me are a pathetic 20%. With this drug, the chances of success zoom into the heady 90s!

This drug has been FDA approved for treatment in another disease called Paroxysmal Nocturnal Hemoglobinurea for a long time. Only yesterday did the FDA approve it for use in aHUS.

This is a significant moment for the aHUS community as this means the drug will be more widely available.

For me to able to use it, if course, it will need to be available in India, which is another story!

Sunday, September 18, 2011

Leeching of vegetables - a great way to reduce your Potassium intake

People lucky enough to be on dialysis must watch their Potassium intake. Just imagine. Life becomes so interesting with these kinds of rules, right? And it can be an edge-of -the-seat thriller if you go above the normal limit of Potassium in the blood. You can become breathless, your heartbeat can become irregular and in extreme cases you may also no longer need to do dialysis! (Yes that was a mean joke, forgive me for this bad attempt at humor on a Sunday morning!)

So, what must we do to limit our Potassium intake. First of all, the simple stuff - don't touch bananas (raw and ripe), chikoo, mangoes and such similar high Potassium fruit. Don't even look at coconuts - they have that much Potassium that it can actually travel over air into your system (hehehe!). Most fruits are high potassium. So, while we may be able to have a little low-potassium fruit (half an apple, a small pear, a small guava, a slice of papaya etc.) - you should check with your doctor or dietician about this - provided we are getting regular, thrice a week (at least) dialysis, we should never binge on fruit.

Most vegetables also have moderate to high potassium in them. However, there is a great way to remove most of the potassium from vegetables without actually impacting their taste. It is called leeching. Now, how many times have you heard that you can actually do something like that - get rid of most of the bad stuff (potassium) while retaining the good stuff (taste)? Not very often since you first saw that high creatinine report, huh? Same here!

So, basically, you dice the vegetables into small pieces. Wash thoroughly under water. Take enough water in a bowl and put the vegetables into it. Boil for about 15-20 minutes. Discard the water. Now you can use the vegetables as you would normally. Most of the Potassium is leeched out of the vegetables. In most of the vegetables, the taste is retained almost wholly.

This technique will not work for vegetables like bhindi, brinjal and some other vegetables but it works wonderfully well for things like beans, cauliflower, cabbage, ridge gourd (toora), bottle gourd (lauki) and most other vegetables.

Yes, it is an additional hassle for the cook! But I would say it is worth it. All the extra potassium is really not good. So, if there is a way to remove it without losing the taste, why not?

Monday, September 12, 2011

Billing at hospitals

As I mentioned in this post, I had to consult the hepatologist at Asian Institute of Gastroenterology a few days back. His OP room (the room where he saw his patients) was on the mezzanine floor of the hospital where the lift did not go. So, you basically had to take the stairs to go there. Or so I was told by the staff at the hospital.

By the time I had figured that he was indeed in the hospital and seeing patients at that time, I had already made one trip up and down by stairs. Though I am not sick enough to not be able to do that at all, I am not well enough to do that without becoming short of breath. Anyway, I gave my file to the hep's secretary and it was put under the files of patients who reached there before me. Suddenly, the secretary asked me for the bill for the consultation fee. I asked him where I could pay. He said I would have to go to the main reception and pay.

Crap! I would have to climb down to the Ground Floor, pay and then climb the stairs again!

I have never understood why most hospitals have billing centralized at the main reception. Yes, it is convenient for the hospital management. But it can be a nightmare for patients. Only when you become a regular do you realize this and pay on your way up. For the hapless newcomer, it is always at least a few visits before this is figured out. Even if there is a lift, hospital lifts are almost always busy and you waste a lot of time making the unnecessary trips.

Some hospitals have billing at the respective counters. This is so much better. You simply need to add this to the job responsibilities of the secretary. It is so important for hospitals to think about these little things from the point of view of the patient.

Friday, September 9, 2011

Callous hospitals

Yesterday I had to go to the reputed Asian Institute of Gastroenterology in Hyderabad. I have been going there for the last few years to consult a gastroenterologist for some stuff. Yesterday I had to consult a hepatologist as well (on the advice of the gastro) to take some important decisions.

So, I went to the reception where they do the billing to ask what were the consultation timings of the hepatologist. The lady at the reception said that the concerned hepatologist does not see patients in the morning. He comes only in the evening between 6 pm. and 8 p.m. So I went back to the gastro's OP room and waited for him thinking that I would first consult the gastro and then return that evening or the next for the hep.

About half an hour into waiting, the gastro's secretary, with whom I had established a good rapport during the past so many visits there asked me about the hep consult. I said the hep did not see patients then apparently and came only in the evening. He told me that was wrong and the hep was actually seeing patients in his room right then!

I was shocked. Here I was waiting like a fool assuming that the hep wasn't available and was planning to make another trip that evening or the next day and all this while the hep was actually seeing patients! I rushed to the hep's room and found that he was, indeed, seeing patients! I quickly gave the hep's secretary my file. There were about ten patient before me. If I had come half an hour before, my turn would probably have come and I would have been done by then!

For the bitch at the reception, it was one careless, capricious remark. For me, it not only wasted so much time, but it almost made me make another whole trip.

Why can't hospitals pay a little more attention to such basic stuff?

Sunday, September 4, 2011

Beware of Reliance Big Adda - they're huge cheats

My mother lost her cell phone recently. So, she needed a new phone. I thought she should get something that gave her instant access to email since many of her friends were on email and it would be nice for her to get hooked to email too. She has an email address but you know how it is with some people, right? Send them an email and then call them and tell them you've sent an email! Heck, you might as well tell them the content as well on the phone! My mother is like that. She rarely checks her email but she proudly goes about giving her email address to everyone.

So, I thought we should get her a phone that will give her instant email access. That narrowed the choice to two phones - an iPhone and a Blackberry. Now, under normal circumstances, I wouldn't have thought twice about this and straightaway gone for the iPhone which is a far superior product than anything out there (BB, Android, Nokia, Galaxy something). But it was far beyond our budget at this point. Even the iPhone 3GS at Rs. 20,000 seemed too high.

At this point, one fine day, my mother got an SMS from an unknown number saying that they were selling the Blackberry Storm 9530 for Rs. 9,999 and that the phone was actually worth more than Rs. 26,000. My mother forwarded the SMS to me. If I was interested I was supposed to send an SMS to some number. I did that. No harm in checking what it was all about!

A little later I got a call from someone asking if I was interested in the phone. I had looked up the features and it had what we needed. It may not be the best Blackberry model available. But it had what we needed. The guy on the call was a typical call center sales executive. Heavily accented voice. Full of enthusiasm. Making promises like nobody's business.

The model that they had messaged about did not have a physical keyboard. I asked for a model that did. He suggested the Tour 9630 which had all the features of the 9530 but had a physical keyboard. I asked him if it was locked to any provider. He said no. I asked him about warranty and service. He said we just had to call a number and someone would come and collect the phone in 48 hours and then have it repaired or whatever was needed. I then said I needed some time to think. He asked me to place the order. When the order was ready, I would get a call and I could say I did not want it. Fair enough. I confirmed the order.

After ten days I got a call asking about the order. I asked them to deliver it. The next day the parcel came. I paid the cash and took the phone. I opened the box and everything seemed all right. It was a sealed box. I opened the covers and then put the battery in. the display said 'Insert sim". I took my mother's sim and then opened the back and tried to figure out where and how I could insert the sim. Believe me, inserting a sim and removing it is such a difficult thing in this model (may be other models too?), that I rued the minute I ordered this phone. The worst however was yet to come.

Even after managing to insert the sim, the phone continued to say "Insert sim". I removed the sim and put it back again. Restarted the phone. Still the same. I put in my sim thinking may be the sim has a probably. Same thing.

I called the number I had for customer care. Some weirdo answered and gave me the typical bull shit that call center executives are trained to give. Try this. Try that. Restart. Sit on it. Throw it up in the air and try catching it. Then they say they will make a request for replacement. And how will they replace it, I asked. They asked me to courier the instrument to their address. Yeah right! They send me a defective piece and I have to courier it to them?

I looked up the internet for this problem and now think that they have sent me a locked phone. I get the Verizon logo while shutting and starting it up. So, it is either a locked phone or a defective one.

I now feel I should have gone for the iPhone 3GS. There are no free lunches in this world. If you pay less, you get less. It is as simple as that!