Tuesday, July 23, 2013

All set!

I am at the airport waiting for my British Airways flight to London en route to Chicago!

The last 24 hours have been quite something! I switched between various shades of nervousness, exhilaration, anticipation, frustration, anger and unbridled joy!

Since I had to catch the 6:40 a.m. flight to London, I would need to reach the airport by 4:40 a.m. which means I would need to leave by about 3:40 a.m. which means I would need to stop my dialysis by 1:40 a.m. which means I would need to start my dialysis by 6:40 p.m. to be able to get in at least seven hours! Phew! Some planning there!

The good news came about 2 hours into my session. I started making calls to the dialysis centers where I had scheduled my sessions in the US. The Chicago center agreed to move my session on the 26th to 6:30 a.m. which was a real relief since that would give me enough time to reach the airport to catch my evening flight to Los Angeles!

Then my brother brought his family including my sweet little nephew and niece to say goodbye. I love them so much! Little niece Nidhi made my heart melt when she gave me a piece of paper in which was scrawled "I love you, my best kaka"! Wait till I show this to Karan!

The frustration came when I tried to activate international roaming on my Airtel sim. I first called, went through the various menu options (oh, how I hate these!) and then finally the call got dropped. I called again, went through the torture again, got through to an exec who kept mouthing shit like, "I would like to take a few minutes of your valuable time!" and then put the call on hold to check on this. Finally he got back to me and said, "Our systems are undergoing upgrades currently. Can you call back after some time?" I yelled at him, "Why don't you call me back since it is your systems getting upgrades?" He seemed throughly confused. He was probably not trained to answer that. I hung up and called after a while. Torture again. Made the request. The lady asked me to wait till she registered the request. The music started playing. Like. Forever. I hung up again!

A few minutes back I called them again. Looks like the request has finally been made!

Anyways, I am all excited about this trip. Looks like things are falling in place, one by one! Like my brother commented on a FB post I made, "It's going to be yet another memorable trip! Just focus on the fun stuff.....". I am going to strictly follow what my friend Subhash advised me on the same FB post, "Stop thinking and enjoy the trip :-)"

Sunday, July 21, 2013

Going back, even briefly, to the dialysis center is such a pain! And I haven't even got my sessions yet!

I am leaving for Chicago in 2 days. I am going to be there for about 10 days. During this period I would need 4 dialysis sessions. Booking these sessions has been nothing short of torturous!

To begin with, I did one company like last time. What I really cannot understand is if it is one company why do I have different sets of paperwork for every center? Every center has its own protocols, its own set of requirements, its own set of rules! When Bill Peckham had recommended that I go with one company, the reason was that I would need to send only one set of paperwork. But no, that doesn't seem to be true!

The process for booking has been quite frustrating. To start with, circumstances were more difficult this time round. The whole trip got finalized just a few days back which gave me very little time to plan unlike last time where I had months to plan my entire trip. (Well, not sure if that helped in the end because I did have some last minute trouble with dialysis scheduling even last time!)

So, this is how I went about it: I drew up my date-wise plan and then figured when I would need dialysis to ensure that I did not get more than a two-day gap and tried to restrict the two-day gaps to one. Then I called the company's service to schedule dialysis treatments and gave them all the information. Even though the information was the same, they had to take it thrice - once for each center I was going to dialyze in!

Then they sent me a long list of paperwork they would need - different for each center. I got all that together and then sent that off. In a couple of days I was told that I had been accepted at the facilities! Yay! End of worries? Well, no! Not at all!

I had to however, book my flights within the US. So, I assumed that I would get the slots I had requested and booked my flights. Two of these flights were on dialysis days! Not a good idea!

Finally, after a couple of days, I was given approximate time slots for my dialysis sessions. Guess what? Two dialysis sessions were such that I would miss my flights if I did my dialysis!

So, now started the pleading - for them to look for another center that would accommodate me at the time that I had requested. Finally, in Denver I was able to get the slot I wanted but Chicago is still going to be very close. If traffic on the way to the airport decides to spoil my plans, I am going to be royally screwed! I have a couple of backup plans I am working on. Let's see how things pan out!

But seriously, there is nothing to beat home dialysis! Dialyze as you wish, when you wish and where you wish (provided you have access to a portable machine, which I do not!). All you guys who have a portable machine - you are freakin' lucky!

Wednesday, July 17, 2013

Ratatouille - an amazingly simple, good looking and tasty dish!

Continuing on my cooking experiments, this Sunday, I decided to make Ratatouille. Ever since I saw the movie, I have wanted to make and eat this dish. For a while, I have been researching recipes on the internet to find one that looked like it would taste good. I found this recipe on All Recipes and decided to go for it this Sunday.

That morning, I realized there was no zucchini (toora) at home. So, on my way to Poorna Tiffins with my brother Prasan, I stopped at a vegetable shop to buy some. Prasan and his wife and kids were coming home for lunch. Whenever I try something new, I make small portions. Especially with a dish with a name like Ratatouille, you are never sure of the taste. Our Indian palates are used to masala in everything. The masalas overshadows the taste of the rest of the ingredients. And Ratatouille has no masala!

So, I was to make a small quantity for me to taste and maybe a small bite for the rest of the folks. When Prasan heard that the dish was called Ratatouille and it had zucchini - he hates zucchini - he said he would not even touch it! Anyways, zucchini was bought, the idlis were had and I returned home to get going on my experiment.

Ratatouille is a fairly simple dish to make despite all the fanciness in the name! You basically dice eggplant (baingan) and sauté in olive oil and parsley. Layer it on a baking dish and sprinkle some salt and parmesan cheese. Then add layers of sliced zucchini (toora), diced tomatoes and sliced capsicum (for non-Jains, you also have garlic, mushroom and onions), each time sprinkling some salt and parmesan cheese. Bake for 45 minutes at 150 degrees centigrade. That's it, you're done!

When the baking was completed, I was alone at home. I sat down on the table and took a spoonful. It was very, very good! I took another spoonful. The flavors of the different vegetables along with a hint of olive oil and parsley all blended in beautifully with the parmesan cheese and made for a great experience!

I finished off half of the small quantity I had made and left the rest of it from my family. When they got back, Prasan's kids took one look at the bowl and loved what they saw - it did look very good.

They took a bite each and absolutely loved it! My mother took a spoonful too and loved it as well. My brother Prasan was, by now, quite intrigued by all the fuss over food that had such a weird name and had something as horrible as turiya (as zucchini is called in Gujarati) in it! He wanted to take a full bite as well but could only manage to get all of one tomato piece!

I sat there watching all the fuss, enjoying myself thoroughly, feeling smug that I had done so well!

Sunday, July 14, 2013

Nominated to be part of Global Experts Forum on Home Hemodialysis!

Today happens to be the 16th anniversary of my kidney disease! Sixteen years back, on this day, I took those vaccinations which triggered Atypical Hemolytic Uremic Syndrome due to the genetic mutation that I did not know I had.

Incidentally, on this day, I am sharing some really good news with you!

There is a global initiative currently underway to promote home hemodialysis. A forum consisting of experts on home hemodialysis from around the world has been formed. The end goal is to prepare a practice manual for dialysis centers who want to offer home hemodialysis to their patients. Dori Schatell of the Medical Education Institute, USA, who has done some phenomenal work in Home Hemodialysis among other things asked me one day if I would like to be a part of this group and I instantly agreed. I sent her my 'resume' - the first I prepared for this kind of work and voila, I was selected!

I have been a part of a sub-panel and we have been working on our section of the manual for a few months now. The forum meets in Chicago on the 25th of this month and I will be going too! I will get to meet some very reputed nephrologists during the meeting. I will also get to meet Dori herself for the first time!

After the meeting I am planning to spend a few days in California with some friends and then return.

I am really thrilled about this whole thing! I will be able to contribute to a cause that has been so close to my heart. Truly, nocturnal home hemodialysis has been a life-changer for me. It has been my life's turning point. Everything I am today is due to this amazing modality. Finally, I will be able to do something concrete to bring this modality to more people. As part of this group, I can actually make a difference.

I would be very keen to see how this pans out in the Indian context as well. When even basic dialysis is out of reach for a vast majority of people who need it, things as fancy as daily home hemo can only remain a pipe dream. Hopefully, through this forum, we can find ways to make a small difference in developing countries such as India as well. Soon enough.

Wednesday, July 10, 2013

Why should hospitals charge more for IP services?

When I was admitted into hospital for the first time after my kidney disease was diagnosed, one of the things that surprised me was that the charges for all services, procedures and tests were about 20% higher while I was admitted compared to when I was an outpatient!

This struck me as weird and unfair. If anything, since you are actually admitted in the same hospital, the charges should be less is what I thought. This aspect of hospital billing is something I have never understood. If a blood test costs Rs. 100 when you're doing it as an outpatient, if you're admitted, it can actually cost you anywhere between Rs. 120 to even Rs. 200. If this isn't unfair, what is?

The difference between IP (inpatient) billing and OP (outpatient) billing becomes more stark when you look at services that cost more. Take dialysis for example. I was talking to a fellow patient who was recently admitted at one of the corporate hospitals in the city. He was charged a shocking Rs. 4,500 for a single session of dialysis whereas regular dialysis is charged about Rs. 2,000 at the same hospital for OP patients! The patient also complained that they would intentionally remove only about a liter of fluid despite the weight gain being in the range of 3 to 3.5 kgs! The patient suspects that this was only so that they would need dialysis again the next day!

No wonder then that most people hate to be admitted into hospitals these days. They realize that every admission, even if only for a day or two, would set them back by a couple of lakhs at least!

Why on earth should hospitals charge more for IP patients for exactly the same services? One argument in favor of this could be that there is additional effort involved in transferring the patient from the ward or room to the place where the service is offered. Or in the case of a blood test, the extra effort involved in the blood sample being drawn at the room and being sent to the lab. Seriously, is this extra effort worth so much more? Rs. 4,500 against Rs. 2,000?

The trouble is people who initially moved away from cost based pricing to value based pricing are now moving to options based pricing! When you are admitted to a hospital, you have no other option but to avail of the service offered by the hospital. You can't go elsewhere for your dialysis session! So, hospitals take complete advantage of this situation and fleece the patients. What they don't realize is what they're doing is so completely unethical that it actually borders on the criminal.

Healthcare is not just any other business. Balance sheets and P & L statements are not the only measure of success. Investors are not your only stakeholders. If all you wanted was profits, you could have got into other businesses. But then, I guess you wouldn't have felt so good about yourself! This industry offers a nice route for people to take a moral high ground and cloak their greed with a veneer of working for the greater good of society!

Sunday, July 7, 2013

NephroPlus introduces Holiday Dialysis

I have always loved to travel. For the first few years after getting on to dialysis, my travel was totally out. Then when I got onto Peritoneal Dialysis, I began some travel. I went to Kodaikanal and Mahabaleshwar. And then, of course, there was the (in)famous trip to Mahabalipuram!

When I had to give up PD, I thought that was the end of travel. But I couldn't stop myself! I did short trips to places close by, to Bangalore and even two long trips to Goa! And then the most ambitious trip of them all - to the US and Canada!

When I looked around in me in India, very few people on dialysis did any travel at all. I could understand. It can be a huge hassle. Flight or train tickets, hotel bookings, cab bookings and as if that was not enough, getting good dialysis! Though travel websites have made things much better these days, it can still be a tough ask for someone on dialysis to plan any trip.

At NephroPlus, we felt this must change. We badly wanted to do something for patients to be able to travel with ease. We thought about the pain points and then one by one started finding solutions to the problems.

We launched the Holiday Dialysis program where we take care of everything for dialysis patients. Patients simply contact another patient - guess who that is - and we take care of the complete planning. We also throw in the required number of dialysis sessions and voila: suddenly travel does not seem that difficult!

We've started with a holiday package to the picturesque Alleppey in Kerala and will be coming with many more!

If you are on dialysis and want to experience the joys of Kerala without any of the accompanying planning headache, click here!

Wednesday, July 3, 2013

Endoscopy over the years: from the unpleasant end of the tube

I have had quite a few endoscopies over the years. For those lucky enough not to have experienced this procedure, they basically put in a tube with a light and a small lens at one end through your mouth right up to your insides to see what's happening in there!

The first one that I had in Kamineni Hospital back in 1998 was probably the most unpleasant thing I have ever experienced in my life - yes it was even worse than watching Delhi Belly! A nurse came in with the tube and asked me to be still. She tried putting in the tube without any anesthesia! Just what was she thinking? Imagine someone trying to put in a big tube through your mouth. How can you not react? I was asked to fast for 12 hours. So there was nothing inside to come out but I was throwing up bile and whatever else could come out. In the end, the nurse gave up and wrote "Patient not compliant" on her file! Yeah, right!

The next one was in Kamineni as well. They made me drink some thick liquid which made my throat totally numb. They also gave me a middle sedative. This time, they could get the tube inside me but not without some drama. I did not feel much neither do I remember what happened. After I came to, the doctor who performed the procedure asked me why I was being so difficult? Did I really have so much discomfort? I wanted to tell him that I had no clue what had happened. I had almost passed out. I kept quiet.

A few years after, I had to undergo a sigmoidoscopy but I refuse to recount that experience!

My next endoscopy was as pleasant as pleasant can be. This time they made me drink some similar liquid which made my throat numb. Just before they put in the tube, they gave me an anesthetic which totally made me go off to a deep sleep. I had no clue what happened to me after that. I woke up in the recovery room after what I later learnt was about ten minutes!

My next endoscopy, which took place this Monday was also similar.

I guess they've mastered at least the discomfort part of it! Thankfully the result was good - same as two years back which is a relief!

While doing such procedures, it is important to make things pleasant and at the very least tolerable for patients because otherwise patients will resist getting it done in the first place. Here, it is more difficult to get the horse to the water; it is easier to make him drink!