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Kamal Shah

Kamal Shah

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.

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Like most other folks on dialysis, when I was initially diagnosed with kidney disease, my Blood Pressure (BP) would skyrocket. I was put on a potent cocktail of anti-hypertensives or drugs that would reduce the BP. When I was diagnosed with Left Ventricular Hypertrophy somewhere in late 2005, I was put on Cardivas 6.25 mg twice a day and Ramipril 5 mg once daily. With this my BP nosedived!

I started feeling giddy very often. When I went back to my cardiologist, he said about the BP, "Lower the better!" He did reduce the dose however but the BP would not rise. He asked me not to worry about it. Soon however the giddiness disappeared. It could have been due to something else (dry weight going up, perhaps) or I might have got used to low BPs.

Either way, I continued the drugs because they were good for my heart. Daily nocturnal home hemodialysis also did a world of good to my heart and my Ejection Fraction which had gone down to 30% came back to a healthy 70%!

Coming back to the BP, I often do 80/50 pre-dialysis and 90/60 post dialysis without any symptoms of hypotension. So, I have kind-of got used to low BPs now. I don't have any symptoms purely on account of low BP. When I pull out too much fluid however, I have those symptoms - cramps, giddiness, weakness etc. But not due to my low BP.

I have been a little concerned about this BP though. Is a low BP harmful for my overall health? I have heard from some doctors that they do not take up major surgeries if the BP is too low because of the risk of complications of general anesthesia.

So I talked to my HPS classmate and cardiologist Anuj Kapadia about this. He said that as long as I did not have any symptoms, it was perfectly all right. So, I am going to let this be for now.

The key, I think, is the symptoms. If you are feeling all right, don't do anything about it.

... http://www.kamaldshah.com/2012/04/blood-pressure-on-dialysis-how-low-is.html

Thursday, 29 March 2012 09:52

Bangalore Diary

Andhera Pradesh?

I had to take the 8:35 a.m. flight to Bengaluru. Seems like a reasonable time. However, for someone on daily nocturnal dialysis, it can be a little uncomfortable. You need to leave for the airport by around 6:45. Which means you need to wind up dialysis by 4:30 a.m. which gives the tech time to reprocess the dialyzer and the bloodlines (yes, I reuse, can you believe it?!) To make things worse, the authorities decided that the denizens of Balamrai, where I stay, should wake up every morning by 6. So, they decided to cut power from 6 to 7 a few days back. Now, we are not yet into those days of the year where it is bright enough by 6. And the light in my room that is connected to the inverter decided to fuse a couple of days back and I had not changed it. So, I had to get ready in the dark!

So, it was with not-so-heavy a heart that I said, "Goodbye, for a couple of days, Andhera Pradesh!"

The Detective Cabbie

The cab ride from home to the airport is usually interesting. Last time there was an oblivious cabbie. This time, there was a detective cabbie. Within a few minutes into the ride, he asked me, "Aap doctor hai?" I was shocked. Was he also teasing me like my friends did? I denied the allegation. He then explained his faulty conclusion. He had seen my car which had the NephroPlus logo at the back and the logo had a red plus sign in the middle. Deduction, eh? I remembered the scene from Pink Panther 2 and felt like asking him how the weather was in Balkampet that morning? And then pithily add that the red sand below his chappals was found only in Balkampet in the city! I refrained.

Kannada and Telugu

It is amazing how similar the two languages are. Many of the letters are written almost exactly alike. Many words are also common. In fact, I strongly suspect that Kannada was derived from Telugu. Of course, true blue Kannadigas suspect that Telugu was derived from Kannada! When I was travelling with some friends from Bangalore to Coorg a couple of years back, we were lost and needed to ask for directions. The people on the road knew only Kannada. I advised my friend who spoke good Telugu to speak Telugu like he was drunk (in a blurred manner, if you get what I mean). The trick worked. Blurred Telugu = Blurred Kannada!

Vidyarthi Bhavan

The dosas in Karnataka are very different from those served in Andhra Pradesh and Tamil Nadu. Karnataka dosas are much thicker than those served in AP or TN. Despite this, they are crisp on the outside and very soft on the inside. I wonder how they manage that.

A few months back, when I went to Bangalore, I got a chance to sample divinity in the form of Idlis at Brahmin's Coffee Bar at Sankarapuram. This time my friend Sandeep suggested I try Vidyarthi Bhavan at Gandhi Bazaar. I secretly wished I could do both but time is never your friend on a trip as rushed as this. So, I reached Vidyarthi Bhavan around 8:45 in the morning and found myself in a place that had a sparse setting.

I settled down on a table which had a couple of other strangers already munching away greedily on some crisp, deep brown dosas. Recounting everything that I ended up eating would be gross. Suffice it to say that I had at least one dosa. It was truly heavenly. Thick like a genuine Kannadiga Dosa (if there ever was such a thing!). Crisp, deep brown on the outside, very soft on the inside, practically soaked in ghee! They served only one chutney with it. No sambar. That was a message basically to focus on the dosa! I did not complain.

As I left, I looked back at the spartan hall of Vidyarthi Bhavan. I couldn't help remark to myself, "Truly, it is in places such as these that India resides."

image




... http://www.kamaldshah.com/2012/03/bangalore-diary.html

Sunday, 25 March 2012 04:03

Do you use a pill box?

Someone on dialysis usually takes a lot of medicines! For the longest time, during life with CKD, I never used a pill box. I had a big plastic box in which I had all my medicines and would take them as per my prescription which was stored in my head. Every now and then, some medicine would finish and then I would call my dad and he would arrange for it to be bought. After a few days, another one would finish and then another call to my dad and that would be arranged as well. Yes, my dad spoils me totally (even at this age!)

At one point, I started ordering medicines for the entire month. I would open this plastic box and then lay out all the remaining strips and then calculate the number of each tablet I needed, write it on a piece of paper and give it to my dad who would have the whole lot brought. Mostly, unless there was a change in prescription or I calculated wrong (which rarely happened!), I would be good until the beginning of the next month.

However, sometimes, I would get delayed in my stock checking exercise and this would result in me running out of a medicine suddenly and then frantic phone calls to my dad.

The first time I saw a pill box being used in India was when my aunt bought one for my grandmother who being diabetic, took a lot of pills as well. She kept forgetting her meds and this helped her never miss her dose. Great idea, I thought!

At Aashayein last year, we gave out pill boxes to all the patients and I took one for myself as well. Ever since then I have been sitting every Sunday morning after my customary visit to Poorna Tiffins and refilling my pill box. It has 21 sections for seven days a week, three compartments for each day - for morning, afternoon and night.

This has helped greatly. It serves two purposes. One, I need to remember or refer to my prescription just once a week while filling. And two, when I am going to run out of a med, I know on Sunday morning itself rather than in the middle of the week and I can make arrangements immediately to get them.

Here is my pill box after I filled out this week's medicines:

image

... http://www.kamaldshah.com/2012/03/do-you-use-pill-box.html

Tuesday, 20 March 2012 10:08

Study says more is not better: what crap!

The trial pundits are at it again! A recent study claims that more dialysis does not show any real benefit in quality of life. I say to them: Buzz off!

I honestly don't need any randomized control trial to tell me that daily nocturnal dialysis or more frequent, longer duration dialysis is better or not better for me. I have lived it, goddamn it! If it wasn't for daily nocturnal, I would have been dead long back. I simply could not work full time or live a normal life on conventional dialysis. Yes there are people who do. But sorry, I cannot!

And isn't it logical? Dialysis replaces kidney function. Kidneys work 24x7. So, you should get as much dialysis as you possibly can. Why is it so difficult to see? The study judges the subjects on numbers - a common mistake many researchers make. Numbers don't mean everything. The subjects who were given more frequent dialysis said they felt better. But this factor was ignored and condemned as 'perceived'. So what the subjects felt was simply what they perceived. What the numbers showed was the ultimate truth!

I do not care for such studies personally but I am worried about the people who will stay away from such great therapies by looking at such studies and be deprived of a chance at a normal life.



... http://www.kamaldshah.com/2012/03/study-says-more-is-not-better-what-crap.html

Saturday, 17 March 2012 09:34

Have I found my calling?

This is one question we all must keep asking ourselves. Have I found my calling? Have I found meaning in my life? Am I doing what I really want to do?

Finding your calling really makes you feel good. You look forward to your day. Life becomes a pleasure. Since most of our waking hours are spent working, it is extremely important that we do what we enjoy doing and what we feel satisfied with.

When you are working on something you do not truly love and are working on it simply for the money you are making, life becomes a chore, a burden, something you are doing day after day without really living it.

Your calling does not always have to be something spiritual - a higher good. It can be material. To me, it is doing what you enjoy doing the most. For example, I know that music is Timothy Marthand's calling, developing software is Kartik Thum's calling and painting is Venkateswara Rao's calling.

My calling came to me in the form of an email from Vikram Vuppala with the subject "Request for a brief meeting". Vikram had chanced upon my blog and then sent me an email asking to meet up. At that time, of course, I was firmly into software and had no inkling of how this was going to take over my life. I actually thought I would grow old banging away at the keyboard churning out software code! It started with one small step - informal advice. I slowly started enjoying it so much that I took up a formal role and now am doing this full time.

I often think what my calling would be had I not fallen sick? I feel it would be something to do with food!

There are many people who can go through life without ever finding their calling. That is a real pity. There are some websites that give advice on how to find your true calling. I am not sure that is a good way to do this. I believe that if it is a true calling, it will itself come calling! Like mine did!

... http://www.kamaldshah.com/2012/03/have-i-found-my-calling.html

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