Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
"Vegetables with chapatis", I answered.
"Wow!", he exclaimed.
For a moment, I wondered, what was so "wow" about a chapati? It was almost like I said something like "Roasted pepper and asparagus marinated in Raspberry vinaigrette"! Never before has the humble chapati been the subject of such a "wow".
There was more to come, however.
He went on to ask me if I had chapatis for lunch everyday.
"No", I said. "Sometimes I have rice."
"Awesome!", he responded!!
One such message had an offer to set your caller tune to songs from Orange. I love all the songs of this film and thought I should set my caller tune to 'Rooba Rooba'. So I called the number mentioned in the SMS and went through the voice recognition based menu to eventually set the song as my caller tune. They charged Rs. 15 for the tune and Rs. 30 to subscribe to the service for a month. Ok, I thought. I got an SMS confirming my selection.
I called my phone from another phone to see how it sounded. I quickly realized that the whole purpose was defeated. First, a message is played where they tell you about the service and how you can copy the dialer tone and then how much it costs you. I can bet that most people would answer the phone before the song starts! WTF?
Rather than subject my callers to this torture, I promptly unsubscribed from the service. I have yet to figure out what happened to the Rs. 45 that was debited to my account.
Note: Non iPhone owners, please do not read the rest of the post
While on the topic of phone tones, have you tried setting a ringtone other than the predefined ones on your iPhone? Well, I tried and they sound really bad. First, I tried using Garage Band and it was terrible. I looked up the Internet for solutions and found some software that was supposed to do a good job. I paid $20 and bought iSkysoft's iPhone Ringtone maker.
I tried making a ringtone from Rooba Rooba and again, it sounded really bad. If I played the same song using the same iPhone using the iPod app, it plays really well. Why then can it not play well for a ring tone???
"If you don't mind me asking, what is that on your left upper arm?"
"You know what that is? That is none of your fucking business!" Of course I say that only in my mind. I mean, I have limited time in the pool. I would honestly rather enjoy the blue water with the winter sun shimmering on the surface rather than get into the details about dialysis. But then, I have not become rebellious enough to say that.
"That is a fistula and it is used for dialysis. I am Kamal and I am on dialysis. Hello!"
After the usual comments about how someone so young (I am only 25, remember?) could be on dialysis, the question about number of times usually comes, especially if they know a friend of a relative of a friend who is on dialysis.
Then comes the classical dilemma for me. How do I answer that question? How many times do I have to get it done? I get it done daily, for seven to eight hours. If I tell them that without any explanation however, they will surely need dialysis themselves soon because of the shock. And the question is how much dialysis I need, not how much I am getting!
Looking at it from a lay person's perspective, I have to get it done about once in a week actually. I can survive for a few months with that frequency. But then, I obviously don't want to get down to why that is really, really bad for the heart, the blood counts, the nerves and all. So, that brings me to thrice a week. Barely enough dialysis. But I have to get it done with that frequency to have some hope to last a few years.
However, in the end, my basic instinct to spread the word about more frequent dialysis takes over and I get into the details of how most people do it twice or thrice a week but I do it daily because it enables me to lead a life as close to normal as possible. Soon, I can sense it becoming information overload because I also go on to explain how daily dialysis brought my hemoglobin up, took care of my left ventricular dysfunction, totally cured my restless legs syndrome and damn it, enables me to swim every day and work full time!
Most people decide to call it a day and get out of the pool and I go back to my swimming.
The rest of the film is about the petition hearings and Ethan's relationships with his nurse, his doctor and a student of his magic among others.
Performances are all very good. Hrithik Roshan is brilliant. Period.
Ethan has lost his kidney function and is slowly losing his other organs too. He is shown actually undergoing a dialysis session, needles in his arm, blood lines, dialyser with blood flowing. And to top it all, he is undergoing the dialysis at home. So, we haven't done badly at all. The first time dialysis is shown on Indian cinema, it is home hemo!
Of course, there are some glitches - a doctor comes home to do his dialysis and the main premise is also somewhat flawed - he really did not need euthanasia to die, all he had to do was not undergo dialysis. This is perfectly legal and he would die within a few days of not dialyzing. To make it less uncomfortable, he could also have just removed water - isolated UF - and not clean the toxins. But I guess, then there wouldn't be a movie to be made!
Not everyone will like the movie however. It is a little slow and the magic bit is probably overdone. Those who can relate to a chronic condition such as this and those who understand this will definitely appreciate it.
However, there are certain risks associated with nocturnal home hemodialysis. In my opinion, the biggest risk is that of blood loss during dialysis. Blood loss can happen in the dialysis center as well. The big difference is that in the center, you have people observing and monitoring you and it is day, after all. Everyone is wide awake. So, should there be any blood loss, it can be immediately noticed and corrected.
In nocturnal home hemo, both you and the tech, if any, are asleep. So, any blood loss can go undetected.
So, should you not do nocturnal home hemo at all? Far from it. The benefits far outweigh the risks. Do you stop flying after hearing the reports of hijackings or air crashes? Do you stop driving a car after hearing about fatal car accidents? By taking proper precautions, you can easily minimize the risks and get all the benefits of good, optimal dialysis.
I am a member of Home Dialysis Central and there I got some very good advice from home hemo veterans about the precautions to be taken on nocturnal. There are two possible scenarios that we need to be careful about. Blood leaks from the arterial and venous sites is the first and blood leaks from the dialyser itself is the second.
What I do is to make sure that the needles at the arterial and venous sites are taped really securely so that they do not come out of the sites at all. For both the needles, I use an 'X' pattern by using two half-inch wide transpore tape pieces and tape them across the needles and make the tape stick against the wings of the needles on both sides securely.
For the venous needle, since it is usually horizontal almost, I put a small cotton ball below and then tape it around. This gives a good angle for the flow and also secures the needle well.
The arterial needle is the one that gave me a major problem one time. This was mainly due to the primary tape in the 'X' pattern coming off. Ever since, I have been putting a half inch wide transpore tape around the wings so that the primary tape does not come off at all.
In addition, I have a blood leak sensor which basically has a sensor that is connected to an alarm and the sensor goes off should any blood touch it. I tape this sensor to the side of my arm just below where the arterial needle goes in. So, despite all this, even if any blood leaks, I will know soon enough.
The other place where a blood leak can occur is the dialyser itself. Now, the dialyser has two openable caps on both ends and after reuse processing, it is possible that the caps are not closed securely enough. This can cause a blood leak. Another possibility is the arterial and venous lines that are connected to the two ends of the dialyser are not screwed properly. This can cause a blood leak to occur as well. So, what I do is to put an empty, dry bucket right below the dialyser and put a blood leak sensor there as well. This will cause an alarm to go off if there is any blood leak.
So, you see, with proper precautions, it is possible to minimize the risks of blood loss during nocturnal home hemo. It is important for us to understand that this modality is the best there is today among hemodialysis modalities. It is the only modality that offers us a chance to live a life as close to normal as possible.