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Sunday, 01 April 2012 00:08

Blood Pressure on Dialysis: How low is too low?

Written by Kamal Shah
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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

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Thursday, 29 March 2012 09:52

Bangalore Diary

Written by Kamal Shah
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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."


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

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Sunday, 25 March 2012 04:03

Do you use a pill box?

Written by Kamal Shah
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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:


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

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Tuesday, 20 March 2012 10:08

Study says more is not better: what crap!

Written by Kamal Shah
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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

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Sunday, 18 March 2012 01:48

Dialysis and a week in the kidney ward

Written by Greg Collette
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I know that all of this will be drearily familiar to many members of the BigD club.  As usual, the trip in hospital switches from boring to unpleasant, to satisfying, to tedious and back again, but the outcome is good.

I started to feel quite unwell last Thursday.  My heart had switched back into Atrial Fibrillation and blood tests at BigD showed raised infection markers.  My nephrologist ordered more tests and blood cultures.  Unfortunately the culture showed some kind of Staph, so he told me to go to the Emergency Department at the Austin, my usual kidney hospital, and he would arrange for me to be booked in.  Julie and my daughter Kathy and I presented ourselves at ED.  Alas, no beds, so I sat on an ED trolley for the night.  Not very comfy, but the medical service was very good.

Assuming the worst, they treated it as Golden Staph, a very nasty and hard-to-treat infection, so while I was on the trolley they started me on vancomycin, the most powerful antibiotic available.  I also had my heart and blood pressure monitored all night. The following morning I was due for BigD, so off I went to the hospital’s dialysis unit for a 4-hour run.  I must say I felt much better after dialysis.

Being infectious I was then admitted to the ward, in a single room with a notice to glove-up at the door.

I have said before that being a renal patient is a long-term proposition. I was last in the Austin about two years ago with pneumonia, and I have been going there since my first transplant in 1995 in the 1920s Ward 4, and my last transplant in 2005, in the flash new Ward 7 North.  Each time I meet old friends (renal nurses, dialysis nurses, specialists, PSAs and others), some that go back at least that far.  It’s a little bit like Cheers, Where Everybody Knows Your Name.  Very comforting.

I went onto a regime of daily blood tests and cultures to better identify the infection.  And being a public hospital, my dialysis regime was changed from 3 hours five times per week to 4 hours every second day. Not a major change, but I really noticed the difference.  I had to watch my diet and fluid intake much more closely, and I felt much less well on each second day, just before dialysis.

But the thing I really disliked was daily blood tests.  On dialysis days, all is fine, because they take the blood from my arterial line.  But on non-dialysis days, they take blood from my non-fistula arm.  That arm has been a pin cushion for years, so the veins hide when the blood nurse comes.  The result is usually lots of near misses and arm like a battleground.

After the second day, to great relief all around, they identified the staph as the much less nasty staph epidermidis.  I was switched from vancomyacin to flucloxacillin (Staphylex).  I began to feel better.

However (just like House!) they wanted to identify the cause of the infection, so I had a range of tests: blood cultures to try and regrow the staph (it never did), CT scans (where they found collections of fluid where my transplanted kidneys used to be – they drained fluid from one of the collections (by poking a needle into it) and found no infection), a bone scan using radioactive dye (which showed the bones squished together in my back, but that was not infection, just the result of a motor bike accident 20 years ago).

By the following Thursday I was feeling pretty well, so the antibiotic was doing its job.  Also, my heart switched back to normal rhythm on the Wednesday, and I started on anticoagulant (clexane) injections until the Warfarin gets to the right level.

Basically, I had recovered, but still no cause identified.  Last Friday I had my last hospital-based dialysis and I was discharged for home treatment.  I am taking the antibiotic orally for 2 weeks and as a final check I am due to have an echocardiogram as an outpatient this week.

It’s not only a pain when you are the one on the trolley, but also for your loved ones.  As usual, Julie and my family and friends were there providing both physical and mental support, with that primal “Is this it?” worry sitting heavily on their shoulders (as it has several times before).  It was great to see them.

We BigD club members are not the robust specimens we used to be, we can fall off the perch quite easily.  Luckily with a little help from some smart and dedicated people, and a loving family, we can climb right back on.

... http://bigdandme.wordpress.com/2012/03/18/dialysis-and-a-week-in-the-kidney-ward/

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Saturday, 17 March 2012 09:34

Have I found my calling?

Written by Kamal Shah
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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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Sunday, 11 March 2012 23:09

If you can't practice, preach

Written by Kamal Shah
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Sorry for upturning the dictum but I have found this to be true in many cases. If you are unable to practice something you should, if you start telling everyone around you how important it is, it often goads you to do the same yourself!

This works, trust me!

Ever since I stopped swimming due to the infamous Porphyria Cutanea Tarda, I have been bad at exercising. I started walking close to home every day but ended up stopping that as well. There would be some reason or the other. No time. Have a cough. Need to rush to work. Did not dialyze yesterday, so have extra fluid in my body, so cannot exercise. I would use a new excuse everyday to not exercise and all of them worked!

Then yesterday I met a friend over dinner. The topic of discussion moved to exercise and eating habits. I started lecturing him on the importance of exercise, about how thirty minutes every day could save him from heart disease. A little into the conversation it struck me. Was I exercising? Oops!

This morning when I woke up, I had all the excuses ready. I had a sore throat. I had to rush to work. I did not dialyze yesterday. But I made a firm decision. No matter what, I was going to do something today. I went for a walk despite all the odds. At the end of it, I felt really good and decided to continue this no matter what!

... http://www.kamaldshah.com/2012/03/if-you-can-practice-preach.html

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Saturday, 10 March 2012 23:52

Key to a perfect dialysis session

Written by Kamal Shah
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When I would dialyze in a hospital, I would always hope that I would be able to sleep through most of the  session. When you sleep through, it is a great way to get rid of the time that it takes. It can be horribly boring otherwise. Many people suggested watching a movie or reading a book or ugh, working! These things never worked for me. The main reason for this was that the rate at which blood was being pulled out of my body, was being cleaned and was being returned made me feel like a small piece of cloth in a washing machine. It was as if I was being tossed and thrown around, squeezed and then twisted again and again.

Except that it wasn't! I just felt that way in the head. So, to watch a movie and all was impossible. I just never felt like doing anything. I would just hope the damn thing would finish soon. That is why, when I would sleep for at least  a 2-3 hours on the session, I would feel really good. That much less time to kill!

A perfect dialysis session in my opinion therefore is one where you can sleep through most of it. When I see someone asleep on dialysis, it feels really nice. I feel like making sure that there is absolutely no noise around so that this blissful state is not disturbed at all. Of course, many people not on dialysis do not realize the importance of this. So, they go about their daily chores without a care. They will shout out loud to their colleagues. They will wake the person up just to find out if he is feeling all right, not realizing that he was feeling good until they woke him up and now chances are that he will not feel as good as he was feeling!

My advice to anyone who is dealing with dialysis patients: if someone is sleeping on dialysis, unless you have a compelling reason to do so, DON'T WAKE HIM UP!

... http://www.kamaldshah.com/2012/03/key-to-perfect-dialysis-session.html

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Friday, 09 March 2012 22:03

Ignorance about basic dialysis concepts

Written by Kamal Shah
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A dialysis patient came to meet me a couple of days back. She has been on dialysis for a couple of years now. She came to ask me about my opinion on Peritoneal Dialysis. Those who've been reading this blog for a bit now probably know my bias towards PD and I explained that dialysis modality is strictly a matter of personal preference and I preferred PD.

We got around to discussing a number of other things. I was appalled at her lack of awareness of basic dialysis concepts. For example, though she probably knew that she must drink less fluid, she had no idea about ultrafiltration that happens during dialysis, why she cramps during sessions and the concepts of fluid weight gain. She had been thinking she must eat less to reduce her weight gain between sessions as advised by the technicians. Poor girl! She was emaciated!

This really goes to show the abysmal level of education being provided by our doctors and medical professionals to dialysis patients. I was bemoaning the lack of options being provided to us. That is much more to ask for than basic education. Better education, I can guarantee will improve compliance.

You, my dear medical professional, have no right to lecture us on fluid weight gain and non-adherence to the renal diet when you don't so much as goddamned care about letting me know what we should know!

... http://www.kamaldshah.com/2012/03/ignorance-about-basic-dialysis-concepts.html

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