Saturday, October 31, 2009

Blood drops keep falling on my bed...

Well on the floor, actually. But that didn't rhyme with the song! Ha ha ha.

What happened was - this morning, when we (the tech and I) got up as the machine signaled that the treatment was done, we noticed that the bucket that is placed below the dialyser had blood in it. Well not a whole lot, but there was blood. Blood has this nasty habit of looking quite gross. The bucket usually has the saline that is used for priming the dialyser and tubes. Even a few drops of blood in that saline can look quite scary to the uninitiated.

The cap of the dialyser was probably not screwed on well enough. It probably was not in line with the threads. As a result blood kept slowly dripping out of the dialyser into the bucket. Drop by drop. Through the night.

My calculation based on my weight which I measure before and after a session was that I lost around 200 ml of blood.

There is actually a device called the Dri-sleeper which has a sensor that is connected to a beeper. Many people on nocturnal dialysis use two of these devices. One is taped onto the arm near the cannulation sites and one is placed below the dialyser. I have used this device for my arm in my early days on nocturnal when I used to ooze quite often from my cannulation sites. I have however, stopped oozing and hence, stopped using the device ever since I started tying my hand to avoid movement of the cannulated arm.

I have never used the device below the dialyser though. This kind of leak from the dialyser has happened only once before and at that time too, the quantity of blood lost was much less than that I lost last night.

I have found the device. I am going to try it out today by placing it below the dialyser.

Some might say - these kind of risks are not worth taking. Maybe you should reconsider nocturnal dialysis. I don't agree.

Nocturnal dialysis is what makes my life worth living. Yes, there are risks. But there are ways to minimize them. I can never imagine myself undergoing in-center again especially now that
I am used to daily nocturnal at home. Without panicking, I have to take adequate precautions so that these kinds of incidents don't repeat.

Thursday, October 29, 2009

Hot water to help reduce amount of water consumed

I have found drinking hot water instead of cool or cold water helps in drinking less water. People on dialysis need to restrict the amount of fluids consumed. Water is probably the most commonly consumed fluid. So it is important to restrict the amount of water consumed.

When I drink water at room temperature or water that has been cooled, I find it easy to gulp down a lot of it. In fact I need to gulp down a lot of it for my thirst to feel satiated. There is a region in the throat that needs to feel the water for some time for this happen.

I switched to drinking hot water instead of cold water a few days back. I found that I could manage to drink much less than I needed to drink with cold water. I felt satiated pretty soon - with a couple of sips. I can't gulp down hot water - it's hot - I can only sip it. And that's the key. Sip the fluids.

In the end, I drank much less than I usually do.

Tuesday, October 27, 2009

The clock starts ticking

For the last three and half years, Jayaram, a dialysis tech has been coming home every night around 10 to help me start my dialysis treatment. Once the session starts, he sleeps in the same room on a mattress. If there is any problem, he wakes up and takes care of it.

Jayaram is an excellent tech. He knows the ins and outs of a treatment. He knows what to do if any problem comes up. I have complete confidence in him. When he is around, I am not at all worried. Even if anything goes wrong, I know he will be able to handle it.

Once in a way, he cannot come. He sends his brother, who is also a dialysis tech to fill in for him. This guy is not half as good as Jayaram. I am a bundle of nerves when he is there.

Jayaram is in his mid-twenties. Of marriageable age. Probably very eligible in his circles. I have been thinking about this for a long time. When Jayaram gets married, obviously, he will not be able to come home for my treatments. Then what?

I have been wanting to learn the treatment myself. I did actually. For a few months I would start the treatment myself entirely. Jayaram would come often after the treatment had started. But then, there were a couple of incidents where some complications arose. My family and I got a little nervous after these incidents. Ever since, I have been waiting for Jayaram to come and start dialysis. (I do the cannulation myself, however.)

This morning Jayaram mentioned that his family had a girl in mind for him and he was going to see her today. I realized that the process had started. Sooner or later, he would find a suitable girl and get married. After that, what?

I realize that I need to get trained in starting and stopping my treatments and handling any complications that might arise. There is just no other way. Fresenius has been talking about home hemo training in India. I have no idea when that is going to materialize.

I am too used to nocturnal home hemo and its comforts to even consider in center hemo. I will have to find a way to get trained really soon. The problem with me is I think about all these things only on weekends. The moment Monday mornings come, I get so busy with my work that I don't have the time or the energy to think about the other, more important things in my life.

Monday, October 26, 2009

Yippee, finally figured out how to disable app updates in Facebook

For a long, long time, I have been wanting to disable getting updates about how my friends were doing on the different applications and quizzes on Facebook.

I couldn't care less about an ugly duckling (or a black sheep or a lonely cow) that appeared in X's farm in Farmville and could do with a new home. Or what Mystic Meg predicted for Y. Or who Z was going on a date with.

To start with, I had a few friends and the app craze hadn't quite caught on. Gradually, however, the number of friends I had on Facebook increased. And unfortunately, their fascination with crap like Farmville did, too.

The result - every morning, when I would religiously access my Facebook news feed, I would be inundated with updates like these. The real updates I was interested in - more important stuff - what A had for breakfast, for example, or some what B did during the weekend would be lost in the junk. And since Facebook showed only a limited number of updates (you have to click on the "More" to see more), I would lose out on all the good stuff.

Checking FB twice a day solved the problem for a few days. But my friend list grew and again, the app craze did, too.

This morning things became a little too serious. About 70% of the updates on my news feed were crap. Farmville, Mystic Meg, Anita, the psychic and what have you. No way I was going to let this become worse.

I went to Settings. I went to Edit Options. I went to every possible link to see how to Disable App updates from Friends. No luck. Google too did not help. There was some stuff about how to do this on Firefox. I use Safari. I wasn't going to let this trivial thing make me switch browsers. I then noticed a small little "Hide" link next to every update on the feed. I clicked on it.

Aha! I found it!

There was a "Hide Farmville" link inside. Cleverly tucked away inside a menu. So that nobody could find it! But I am cleverer than they think I am.

I hit my laptop trackpad quite hard while clicking on the link, actually. It was a victory of sorts. I then went ahead and disabled every freaking application. Farmville, Mafia Wars, Dates, Meg, Anita. All of them.

Now, my Facebook feed looks so much better. Almost like its had a nice shower. Only the important stuff. No chaff.

Sunday, October 25, 2009

Free dialysis - coming soon to a center near you

The Andhra Pradesh state government is extending the Aarogyasri program for dialysis. Very soon, 111 new dialysis centers are going to be operational. People with Aarogyasri cards can avail of dialysis thrice a week at these centers free of cost.

This is truly revolutionary.

So far, dialysis under the Aarogyasri scheme was limited to existing centers with their limited facilities. Very few people could undergo treatments. Also, the coverage was only for twice-a-week dialysis, clearly inadequate by any standards. The new scheme increases the coverage to thrice a week dialysis - of course, still inadequate, but an excellent step ahead, at least by Indian standards.

Is this utopia? Far from it.

There are two basic problems when you talk about dialysis in India. One is the dialysis providers, the cost of treatment and the payment model and the second and more serious problem is that of knowledge among the patient population. Patients and their caregivers (family) do not understand that dialysis is solving a problem - that of kidney failure. They treat dialysis as the problem. This mindset causes a large number of problems.

For example, when I tell a fellow patient (and even some doctors) that I dialyze every night, for seven hours each night, they are shocked. Why?! Do you need that much dialysis? That is the common refrain. They do not understand that the more you dialyze, the better it is - both in the short term and the long term.

I have people tell me that their doctor has asked them to dialyze thrice a week but they feel all right with twice a week dialysis. Why should they go thrice a week? The cost of dialysis and the fact that most people have to pay out of pocket for their treatments has a huge role to play in this "Why more" mindset.

Hopefully with the state providing for thrice a week treatments, we will see better compliance with the increased frequency prescription.

Thursday, October 22, 2009

Arterial buttonhole

I have been using two pairs of buttonhole sites for the last couple of months. The venous sites are always well-behaved. Not much pain. The tracts are well formed. The needle goes in smoothly. The arterial fellows are usually badly behaved. They give me trouble every night. Almost.

I don't know what the problem is, really. The needles do go in for the most part. But there is a stinging pain. I used to inject a little lignocaine which would make the actual cannulation comfortable (even if the lignocaine itself stung for a few seconds!). But I was told by many people to avoid using lignocaine. So, I tried that and have been avoiding it for the last few months.

A couple of days back, the arterial needle just wouldn't go in. No matter what I tried. Touch cannulation, rotating the needle slightly, pushing and tugging. Nothing worked. I then switched to a sharp needle and started the treatment.

The next night I used the alternate site and everything was fine. Last night, back to the troublesome site, I used a sharp again. I have no idea where this is going. But for the last couple for weeks, the thought of cannulation has me all worked up towards evening.

Sometimes I think, what the hell, just use the lignocaine, never mind the side effects. But then I think what if there are some really bad long term effects? So, I am trying to avoid it for now. Let's see how it goes.

Saturday, October 17, 2009

Lighting up a life - the story of Diane Franks

Diwali is the festival of lights. In millions of homes all around the country, people light 'diyas' or lamps to celebrate the festival. The lamp symbolizes light in a dark world. Just like Diane Franks.

Diane Franks is a healthy individual living in the UK. She is currently undergoing an evaluation to determine whether she can donate one of her kidneys to someone who needs it. The amazing thing is she is going to donate the kidney to an unknown person, someone she will never meet, someone she has no relationship with.

Giving a kidney to a loved one in need is the best gift anyone can give. My mother gave me one of her kidneys and I can never thank her enough for that. We see many examples of people donating to their parents, children, siblings, spouses etc. And each one of them is an act of genuine sacrifice. Each of them deserves tremendous appreciation. It is not easy to agree to undergo a major surgery and giving away a part of you even to a person who is so important to you.

Diane Franks takes this to an entirely new level.

She is going to be donating a kidney to someone she doesn't even know!

What do you say about this? Why is she doing this? What prompted her to decide on this?

In Diane's own words, "...I do not like the thought of people struggling, wanting help and not getting it. I know the emotional pain and depression it can bring and believe me, no one should have to go through that. If I can give help to someone, I will – and God willing, I hope that is what I can do in this instance."

Diane will not be meeting the person her kidney goes to. She will not even know how the person is doing. It will be, as she says, an "emotional hole" for a while. I really wonder why this is so. Wouldn't it be great for a donor to be in touch with the recipient and see the difference she has caused in someone's life? Wouldn't it be fulfilling to see the change she has been a part of?

People like Diane Franks reaffirm our faith in humanity. They are like the lamps of Diwali. Bringing light in an otherwise dark world. Read her story here.

Friday, October 16, 2009

Are white lies used by managers really beneficial in the long run?

Let me tell you about a little incident from my days as a manager at Effigent.

I was managing a project with a small team. We were working on a particular feature which the customer had asked for. I had a call with the customer one morning and discussed the schedule and by when he would like the feature to be deployed. The customer said he would like it by next Monday. It was Thursday. We had about 8 working days.

I came out of the meeting and called my team. I told them that the customer wants the feature to be deployed in a week! Without cringing one bit! I had developed quite a knack at telling 'white lies'. Lies that did not do any great harm but were lies nevertheless.

In my defense, I knew by then that most software tasks take more than what you budget for initially. So, I thought if I gave 5 days, it would eventually get done in 8 days and we would meet the customer's expectations. If I gave 8 days to start with, the task would get completed only in about 11 or 12 days and we would lose face with the customer.

There is a flaw in the reasoning above.

The amount of time taken to complete a task is assumed to vary based on the time at hand. This may be true in some cases, especially when your team is comprised of people not diligent enough. I couldn't say that about my team. They were all conscientious and sincere. But, this was a problem of habit. I was habituated to shortchanging my team on deadlines.

Now, on the other side of the fence, I get irritated when my manager says, "We have a demo tomorrow. This really needs to get done today!" And then we work hard, stretch and get all tense by evening and complete the task for the demo, possibly even jeopardizing the product in the short term. And then next day, no demo happens!

What has happened? By creating an artificial deadline, the work has actually been increased. The quality of the product has been compromised. Our manager has lost our trust. By doing this a few more times, we could have a 'cry wolf' syndrome at play!

That is why, after all these years in the software industry, I strongly feel, management of software teams really needs change. More common sense. Less processes.

Tuesday, October 13, 2009

No dialysis for 2 days - how it felt

When I went for the trip to Vizag and Araku, I did not dialyse for two nights in a row. I have done this very rarely. Only twice before, I think. This is a classic problem. If you want to do a meaningful trip, you have to go for atleast two - three nights away from home. That inevitably brings up the question of whether to try and get dialysis at a hospital or skip a session or two.

I have been dialysing at home for the last three and half years. Daily nocturnal mostly. I do not dialyse on Sundays. That means I am without dialysis only for one day at most. The problem with dialysis outside home is that first of all, no one allows you to dialyse for more than 4 or 5 hours. And they do not have night sessions. I am used to seven hour sessions at night. This means that I would have to spend about 5 to 6 hours (including time to get to the unit and back and the startup and close up time) of my waking day on dialysis. Not a very good thought when you're on a holiday!

Another thing which bothers me about dialysis away from home is the cannulation. Many centers do not even know about buttonholes or self cannulation. So, I have to explain to them that I do my own cannulation and I use my own needles. Last time I dialysed in Goa, the tech called the neph and explained that I wanted to cannulate myself and use 'different' needles. Thankfully the neph agreed. What if he hadn't?

On the other hand, not dialysing has its own share of problems. You have to watch your fluid intake. It is difficult to control sodium too. Most places will not oblige you with salt-free food. Since I was at a place where I was for the most part inside water - a beach, a stream etc., I did not have a problem. But if the place was less conducive to restricting fluids, I would probably had a miserable holiday - fretting about fluids all along!

At the end of the day, I put on very little fluid weight until I got back home. But then, when I knew I was close to my dialysis machine and that I would get on to the machine in an hour or two, I kind-of took it easy and gulped a little more than I should have. I put on 6.2 liters over 3 days and 2 nights. Which wasn't too bad!

Sunday, October 11, 2009

Chaparai video

Here's a video of me sliding down the natural water slide at Chaparai:

Friday, October 9, 2009

Trip to Vizag and Araku - 3

We reached the Haritha Valley Resort at around 1:30 in the afternoon after an excellent journey through fog and greenery. We checked into our rooms and had our lunch. We then headed out to Chaparai - slippery stone in Telugu. This was about 14 kilometers from Araku.

A few kilometers on our way, we stopped to take a look at a stream that was flowing below a bridge. A group of village women who were carrying bundles of sticks, probably transporting it somewhere on foot, had stopped on the bridge to take a break. Srinivas asked them how far Chaparai was from there. They said it was very far. We were quite surprised. One of them then said, "If you go by car, it is not very far, but by foot, it is very far!" A very telling comment on the different perspectives different kinds of people have. For us, 14 kilometers was nothing. For these women however, 14 kilometers meant probably many hours of walking.

Chaparai is basically a perennial stream that flows over a sheet of rock. The stream gushes over hard rock and forms a shallow bed where you can walk over to the other side where there is a natural water slide! You have to walk down a flight of steps to get to the bank of the stream.

On reaching the place, we quickly changed into our swimming gear and ran down the steps to the bank. Initially we were a little hesitant to get into the water. There was a guide who offered to help us across the stream. Slowly, he held Srinivas' hand. We held each other's hands, formed a chain and trudged through the stream. We had to be careful because we couldn't see the rock below through the water. There were crevices which could hurt us and we had to avoid these by simply guessing their location by looking at the patterns of the flow of the water! The guide, of course, knew where the crevices were and he warned us in advance.

At one point, there is a small bridge, about 2 feet long. This was to help cross a deep gap in the rock. There was this old man standing at the corner of the bridge who told us that we would have to pay Rupees Three per head to cross the bridge. This was a riot! We agreed, of course.

We made our way to the middle of the stream where there is a portion of the rock where there is hardly any water and you could stand there safely for a while. The atmosphere was almost like a festival. There were quite a few people there. Many people had started sliding down the natural water slide on the side of the stream. The water was gushing really hard there and we were a little nervous about trying the slide.

There was also a point in the middle of the slide where people 'bumped' up before continuing. It looked like there was a piece of rock there below the gushing stream. Srinivas and Laxman, brave-hearts that they were decided to give it a shot. One by one they took the slide. They looked like they had fun. They told me that the point where the slide ended had sand below so it did not hurt at all when you landed.

I couldn't resist the temptation. I slowly made my way to the top of the slide. Note that the whole area is covered by the gushing stream and there is hard rock with crevices below which you cannot see. There was this guy at the top of the slide who was playing the good samaritan. He was helping people take a good start with correct positioning of the feet. If you don't position your feet correctly, the water can actually sweep you down the slide. Not life-threatening, but scary nevertheless.

I took position. Looking at the water forcefully make its way down the slide from top was quite unnerving. For a moment, I had second thoughts. I almost turned back. But then the thought of sliding down with the force of the water got to me. I gave in.

Whoooooosh, bump, whoooooosh, whooooooosh, splash!

Within a few seconds I landed into the pool of water above the bed of sand. For a few seconds, I lost control and was being dragged away by the stream. Thankfully, there was rock ahead and I held on to it. But it was great overall. I did sustain a bruise but the exhilaration of going down the water made it worthwhile. No slide in a water park can offer the thrill that this natural slide offered.

We played around for a while in the stream taking pictures and then walked back to the bank of the stream, more confidently this time. We dried up and changed and then got back to our resort.

We had dinner at another resort.

The next morning, we started back for Vizag. On the way back, the weather was quite different from what we had experienced the earlier day. We were really lucky the previous day.

All in all, we had a great trip, memories of which we will carry for a long, long time to come.

Thursday, October 8, 2009

Trip to Vizag and Araku - 2

We started at around 9 in the morning for Araku. The weather was perfect. There was a slight drizzle. As we got out of the main city, the surroundings became more and more beautiful. The lush green countryside and the forested hills with the clouds perched on top were a treat to the eyes.

After a while, we began our ascent of the hills. The view of the valley below on one side of the road was really good. Terraced plantations and a lone cottage here, a sleepy hamlet amidst green fields there, we soaked in what that moist October morning had to offer with amazement.

We encountered our first stream about an hour into the journey. Like happy schoolboys, we played with the water, washed our faces and climbed the rocks through which it flowed. It was like a mini-waterfall. We encountered more such streams on the way, one of the advantages of taking a car to Araku rather than the train where you have no control of where you want to stop.

The moist morning caused a lot of fog which made the whole experience ethereal. The dark green cedars almost touching the sky with the fog around them looked beautiful indeed. At one place, near the Ananthagiri coffee plantations, hawkers had set up small roadside shops where they were serving coffee. Sipping the piping hot coffee in those foggy surroundings was really magical.

To get to the Araku valley, we had to go down the hill eventually. We were wondering if we had just completed the best part of our trip. We hadn't.

Wednesday, October 7, 2009

Trip to Vizag and Araku - 1

It is the time of year when the travel bug really gets to me. I just have to go somewhere. So, I quickly checked with my friends about doing a quick Vizag/Araku trip over the 2nd October long weekend. Everything fell into place pretty quickly. Kartik, A Srinivas, Murli, Laxman and I. There was, however, incessant rain in many parts of the state and all our families were concerned with us making the trip. We were undeterred.

We reached Vizag on the 2nd October morning. My first thoughts were, "What a beautiful place!" Vizag has hills on one side and the beach on the other. It had also been raining a little. This gave the whole place a fresh, clean kind of look which accentuated the whole experience.

After a sumptuous breakfast at the Dolphin Hotel, where we were staying, we headed out for the Yarada beach. I had heard so much about this beach. It was about an hour's drive from our hotel. You have to drive up a hill and then go down to the beach. The first glimpses of the beach from atop the hill were truly magical.

We took the entrance through a private resort to the beach. The beach was lovely. The water was cleaner than any beach I had seen in Goa. We quickly changed into our swimming gear and hi the water. The water was a little rough. Some of the waves tipped us over!

We then went over to the left side of the beach where there were rocks jutting out into the sea. We sat on the rocks for a while feeling the powerful waves lashing at us. One wave was so strong that it displaced me from my seat.

We showered and then started back for our hotel after grabbing a bite at the resort restaurant. Back at the hotel, a couple of us decided to hit the pool - no, we had not had our share of water for the day!

The next morning we left for Araku.

Thursday, October 1, 2009

Going back to the bay area - Bay of Bengal that is!

I am off on a brief holiday to Visakhapatnam and Araku tomorrow with a few friends. I am back on Sunday evening. We plan to visit the much talked about Yarada beach in Vizag and then go over to the picturesque Araku valley.

I would like to visit the Ketki falls and Chaparaya where apparently a river runs over sheets of hard rock.

The weather promises to be fun. Rains have been predicted in the area through the weekend. Let's hope the weatherman is right for once!

The last time I hit the Bay of Bengal, a tsunami was triggered. I really hope the sea is more kind this time!