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Thursday, 08 September 2011 20:15

Callous hospitals

Written by Kamal Shah
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Yesterday I had to go to the reputed Asian Institute of Gastroenterology in Hyderabad. I have been going there for the last few years to consult a gastroenterologist for some stuff. Yesterday I had to consult a hepatologist as well (on the advice of the gastro) to take some important decisions.

So, I went to the reception where they do the billing to ask what were the consultation timings of the hepatologist. The lady at the reception said that the concerned hepatologist does not see patients in the morning. He comes only in the evening between 6 pm. and 8 p.m. So I went back to the gastro's OP room and waited for him thinking that I would first consult the gastro and then return that evening or the next for the hep.

About half an hour into waiting, the gastro's secretary, with whom I had established a good rapport during the past so many visits there asked me about the hep consult. I said the hep did not see patients then apparently and came only in the evening. He told me that was wrong and the hep was actually seeing patients in his room right then!

I was shocked. Here I was waiting like a fool assuming that the hep wasn't available and was planning to make another trip that evening or the next day and all this while the hep was actually seeing patients! I rushed to the hep's room and found that he was, indeed, seeing patients! I quickly gave the hep's secretary my file. There were about ten patient before me. If I had come half an hour before, my turn would probably have come and I would have been done by then!

For the bitch at the reception, it was one careless, capricious remark. For me, it not only wasted so much time, but it almost made me make another whole trip.

Why can't hospitals pay a little more attention to such basic stuff?

... http://www.kamaldshah.com/2011/09/callous-hospitals.html

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Sunday, 04 September 2011 11:00

Beware of Reliance Big Adda - they're huge cheats

Written by Kamal Shah
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My mother lost her cell phone recently. So, she needed a new phone. I thought she should get something that gave her instant access to email since many of her friends were on email and it would be nice for her to get hooked to email too. She has an email address but you know how it is with some people, right? Send them an email and then call them and tell them you've sent an email! Heck, you might as well tell them the content as well on the phone! My mother is like that. She rarely checks her email but she proudly goes about giving her email address to everyone.

So, I thought we should get her a phone that will give her instant email access. That narrowed the choice to two phones - an iPhone and a Blackberry. Now, under normal circumstances, I wouldn't have thought twice about this and straightaway gone for the iPhone which is a far superior product than anything out there (BB, Android, Nokia, Galaxy something). But it was far beyond our budget at this point. Even the iPhone 3GS at Rs. 20,000 seemed too high.

At this point, one fine day, my mother got an SMS from an unknown number saying that they were selling the Blackberry Storm 9530 for Rs. 9,999 and that the phone was actually worth more than Rs. 26,000. My mother forwarded the SMS to me. If I was interested I was supposed to send an SMS to some number. I did that. No harm in checking what it was all about!

A little later I got a call from someone asking if I was interested in the phone. I had looked up the features and it had what we needed. It may not be the best Blackberry model available. But it had what we needed. The guy on the call was a typical call center sales executive. Heavily accented voice. Full of enthusiasm. Making promises like nobody's business.

The model that they had messaged about did not have a physical keyboard. I asked for a model that did. He suggested the Tour 9630 which had all the features of the 9530 but had a physical keyboard. I asked him if it was locked to any provider. He said no. I asked him about warranty and service. He said we just had to call a number and someone would come and collect the phone in 48 hours and then have it repaired or whatever was needed. I then said I needed some time to think. He asked me to place the order. When the order was ready, I would get a call and I could say I did not want it. Fair enough. I confirmed the order.

After ten days I got a call asking about the order. I asked them to deliver it. The next day the parcel came. I paid the cash and took the phone. I opened the box and everything seemed all right. It was a sealed box. I opened the covers and then put the battery in. the display said 'Insert sim". I took my mother's sim and then opened the back and tried to figure out where and how I could insert the sim. Believe me, inserting a sim and removing it is such a difficult thing in this model (may be other models too?), that I rued the minute I ordered this phone. The worst however was yet to come.

Even after managing to insert the sim, the phone continued to say "Insert sim". I removed the sim and put it back again. Restarted the phone. Still the same. I put in my sim thinking may be the sim has a probably. Same thing.

I called the number I had for customer care. Some weirdo answered and gave me the typical bull shit that call center executives are trained to give. Try this. Try that. Restart. Sit on it. Throw it up in the air and try catching it. Then they say they will make a request for replacement. And how will they replace it, I asked. They asked me to courier the instrument to their address. Yeah right! They send me a defective piece and I have to courier it to them?

I looked up the internet for this problem and now think that they have sent me a locked phone. I get the Verizon logo while shutting and starting it up. So, it is either a locked phone or a defective one.

I now feel I should have gone for the iPhone 3GS. There are no free lunches in this world. If you pay less, you get less. It is as simple as that!

... http://www.kamaldshah.com/2011/09/beware-of-reliance-big-adda-theyre-huge.html

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Thursday, 25 August 2011 11:44

Anna's three conditions must be met

Written by Kamal Shah
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So, the government has finally given in. Or have they?

The three conditions that Anna Hazare has set for him to give up his fast - that discussions must start on the State Lok Ayuktas, on the Citizens' Charter and that the lower bureaucracy must be included in the Lok Pal - are the absolute crux of this whole movement that has galvanized the entire nation!

Team Anna has hit the nail on the head. These are the most important parts of the Lok Pal. Honestly, if the Prime Minister is corrupt or if the Higher Judiciary is corrupt, it does not affect the common citizen directly. We may seethe with anger. We may discuss it and post statuses on Facebook and Twitter. But it will not affect our day to day actions.

However the lower bureaucracy is what you and I have to deal with in our daily lives! It is the citizen's charter that will help us get our things done. For example, that a ration card must be given in three days or that a passport must be issued in fifteen days are revolutionary steps that will make the life of the common man so much less frustrating.

So, at the risk of sounding cruel towards Anna's health, I am hoping that the fast is broken only if absolutely fool-proof assurances are given by the government on these three issues.

... http://www.kamaldshah.com/2011/08/annas-three-conditions-must-be-met.html

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Saturday, 20 August 2011 12:27

I might as well give my 2 cents on Anna

Written by Kamal Shah
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You remember this song:

Its Eer Bir Phatte. In the middle it goes, "Eer kahe chalo lakdi kaat aae, Bir kahe chalo lakdi kaat aae, Phatte kahe chalo lakdi kaat aae, Hum kahen chalo humau lakdi kaat aae..."

So, since everyone is giving their two cents on Anna Hazare and the Jan Lokpal, I thought chalo hamau apne do cents de de!

Ok, so after hearing this topic debated to death on the news channels (mainly NDTV, I find Arnav Goswami making everything a national issue of grave consequence so even a real national issue of grave consequence seems mundane), I agree that people rallying around Anna are not really rallying around his version of the Lok Pal but are rallying together since they are so fed up and angry over the corruption this Congress government has systematically institutionalized. Every government is corrupt. But the Congress takes it to entirely different levels! 

And excuse me, why are they harping about bringing Raja and Kalmadi to book? Why were the 2G and the CWG scams allowed to happen in the first place? The PM keeps blaming the compulsions of leading a coalition for all the ills in the country. Sometimes I feel we need more of a strong PM than an honest one!

Coming back to Anna, I strongly feel they should be more reasonable. Rather than set impractical deadlines and fritter away a golden opportunity, they should come back to the negotiating table and sort things out with the government. The wily government managers are waiting for things to cool down. Public support for the cause may not last long. When people tire of camping at Ramlila Maidan, the numbers will soon dwindle and Anna will be called a loser. At that point, all we will be left with is, as Arvind Kejriwal famously termed it, the 'Jokepal'!

Team Anna should start talking with the government and sort out the contentious issues now. Now is when the heat is on. The government cannot be seen as going soft on corruption. They will have to compromise on some of the issues. Get what we can when we can. Later might be too late.

... http://www.kamaldshah.com/2011/08/i-might-as-well-give-my-2-cents-on-anna.html

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Thursday, 18 August 2011 20:19

Dialysis, fistulas and fatal haemorrhages

Written by Greg Collette
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This post is about fistulas, the dialyser’s lifeline.  It’s about how and why the can haemorrhage, signs and symptoms that indicate a potential problem and action to take to prevent it.

We BigD-ers need a fistula to make it easy to insert dialysis needles.  The needles are reasonably large, and cannot be inserted into normal veins.  If you don’t have a fistula and you need to go on dialysis, you usually get a Perm Cath (permanent catheter) or central line that is connected directly to one of several large veins in your neck.  If you can’t grow a fistula on one or both arms because the vein has too much scar tissue, you can have an artificial graft tube, called a graft, inserted into your arm to provide the same access.  I have written about these and how they work in previous posts.

While our fistula keeps us alive, it also threatens our lives.  It is a great big pressurised blood vessel a couple of millimetres under our skin.  A small tear or break, and we can bleed to death in minutes.  Yet we puncture it every day or two and seal it off with a pad or gauze for an hour or so, then we puncture it again.  So just how much of a threat is it?

In February 2010, I wrote a post called Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady trickle of comments about other people who had died or came close to death from a leaking or haemorrhaging fistula.  Coby  wrote about a dialysis patient who nearly died when her infected fistula burst.  Salma’s father was saved by intensive care when is fistula bled out.  Steve’s father bled to death in 10 minutes when his fistula burst after two weeks of problems.  Mek’s father bled to death after multiple bleeds over a few weeks.  Sandy’s husband had an emergency flight that saved his life after his fistula haemorrhaged.  Ebony’s father found his wife on the kitchen floor after her graft burst.

What did these people have in common?  In each case, it didn’t happen overnight.  Their fistulas were red and sore (infected or blocked), or had weak spots that failed to re-seal after needling:  their fistulas needed medical attention.  I have praised the people in my unit before, but they deserve it.  They are constantly examining everyone’s fistula.  If there is a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.  In a unit of 40 people, I know of at least 10 that have had rebuilt fistulas.

In each of the above cases, this didn’t happen.  Dialysis unit/medical staff missed, ignored or played down life threatening fistula problems.  And any fistula problem is life threatening.  In most cases, the person writing the comment was exploring legal action, and rightly so.

So how common are fatal haemorrhages? 

It seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages are rare.  That doesn’t make it any less traumatic for the families when it happens, but mostly, unless you have some specific problems with your graft or fistula, it is not something to lose sleep over.  Most fistulas and grafts are solid and robust.  Fistulas grow slowly and are usually quite firm and elastic.

What causes a haemorrhage?

Typically, there is some weakness in the fistula or graft.  The owner may go to bed and during sleep lie on his/her fistula, creating a higher pressure than it can take, causing it to reopen a needle access hole, or to tear at its weak point.  Arterial blood at high pressure then streams from the opening.  If no action is taken, that person then dies from loss of blood.

What can cause that weakness?  Signs and symptoms

In a fistula, over several few years the vein wall can expand a lot.  It can look like you have a mouse under your skin.  I have seen quite a few mice; I have a couple myself.  If the expansion becomes too large (it can look Popeye’s forearm or an extra bicep), the walls of the fistula become very thin and weak.  Just like a balloon that has been blown up too high, it loses its suppleness and becomes fragile.  With very little fistula wall to repair, and only a thin layer of skin over them, access holes can become points of weakness.

As they get older, people in their 70s and 80s, find their skin becomes thinner and more fragile.  Their fistulas will naturally be weaker and less robust than that of a 40-year old.

Grafts in particular can become blocked or leak into the skin surrounding access holes.  Blockages build up pressure in the graft, combined with unhealed access holes create weaknesses. Also, since it is a piece of inert material, it won’t get sore like a fistula, so there are no symptoms until the problem (or infection) is well advanced.

Infection, which may start on the outside of a fistula or graft near an access hole, can if untreated, gradually burrow into the fistula and eat away the fistula wall, creating a hidden, fatal point of weakness.  Infection is usually accompanied by swelling, pain and sometime pus discharge, which are strong signs of potential danger.

Action to take

There are at least two lines of defence.

At the last line of defence, dialysis unit staff and your nephrologist should be watching for signs of fistula/graft weakness, and take action as above.

At the first line of defence is us, the fistula owners.  We need to check our fistula every time we dialyse.

How does a fistula grow as big as magician’s balloon?  One day at a time.  Keep an eye on how big your fistula is growing, and talk about it with the unit staff.  Big fistulas are not only unsightly, they are dangerous.  Talk to your nephrologist and arrange for fistula surgery with a vascular surgeon to reduce it back to “normal” size.

Look for infection: any pain, swelling or discharge.  Tell your nurse or doctor as soon as possible and begin a course of antibiotics.  Be scrupulous with hygiene.  Wash your hands and your fistula when you arrive, and again before you leave.  Dress and sterilise any cuts or scrapes on or near your fistula.

Look for blockages.  Lift your arm over your head and check that it collapses as the blood flows from it into your body.  Check that it recovers its shape when you lower your arm and the blood returns.

If find anything you don’t like about your fistula, tell the unit staff.  And don’t take no for an answer.  If they are slow to act, tell them that you consider the problem life threatening.  Make sure they do something.  Tell your carers and get them to tell the staff.  Tell your doctor.  Make a fuss, but get it fixed.
The alternative is too bloody to think about.

... http://bigdandme.wordpress.com/2011/08/19/dialysis-fistulas-and-fatal-haemorrhages/

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Thursday, 18 August 2011 09:14

My changing attitude towards dialysis

Written by Kamal Shah
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Until a while ago, I never used to like to miss a dialysis session. I would go for at least six nights a week and at one point actually started dialyzing every day. Seven days a week. No break whatsoever. At that time, I was mostly starting on my own and Jayaram would close. On Sundays, when Jayaram did not come, I would do everything on my own. Of late, however, I have been waiting for Jayaram to come and start. I had a couple of scary incidents and so got a little wary of starting.

Honestly, for the past few months I have become a little tired of dialyzing every night. The whole rigmarole of priming the dialyzer and the lines and then starting on your own and then being all alone while dialyzing has got to me. Also, I sleep about 70-80% as well on dialysis than off dialysis. The most important factor, however, is my fluid intake. Believe it or not (and swear you are not going to tell my nephrologist) I used to put on 3-4 kgs of fluid weight every day.Even people with healthy kidneys don't drink that much! But I had a major mental problem.

Recently, my fluid weight gain has dropped to an average of 2.5 kgs per day. I know, that is also quite a lot. But it is at least better than before and headed in the right direction. Not that I am making any conscious effort or that I am unduly worried!

The thing with this is now I can afford to miss a session, especially on Sundays, since my weight gain does not warrant one. So that obviates the need for me to do everything on my own. And I get a full night's sweet, deep sleep.

... http://www.kamaldshah.com/2011/08/my-changing-attitude-towards-dialysis.html

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Saturday, 13 August 2011 09:34

The beautiful genome

Written by Kamal Shah
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Have you ever thought, how, when a surgeon opens up a patient on the operating table, (mostly!) he finds everything in the right place? The kidneys are where they are supposed to be, the portal vein is where he expects it to be. If he wants to take a jab at the liver, he will know exactly which area he has to look in.

All this, despite not having opened that patient ever before. Well, he probably would have seen scans but heck, those too are mostly on expected lines!

How is every human so alike? Well, externally humans are very different but inside the body, physically, everything is so similar! Normal spleens are about the same size, shape and texture. Everyone has bean shaped kidneys. Almost everyone has two.

Medical science is entirely based on the fact that humans will have mostly very similar insides which will behave very similarly under similar circumstances.

I often wonder, with amazement, how experienced surgeons know their way inside a human body; how skillfully they stitch together veins and arteries from one place into another; how, during a transplant, everything works with clock-like precision. Put the kidney there and connect up all the veins and arteries and within a jiffy you see urine being produced! And all this, despite the surgeon not ever having seen the insides of that patient before!

I find all this totally incredible!


All thanks to the genome! The genome for a species dictates all this, I guess. Everything is encoded in those tiny little structures! Isn't it amazing that those sequences of alphabets should dictate such complex structures, such complex chemical reactions that are happening every second inside our bodies, we being blissfully unaware all the time!

I know you might think I am growing a little crazy here but stop and think for a moment of how all this magically happens and you will be amazed!

... http://www.kamaldshah.com/2011/08/beautiful-genome.html

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Friday, 12 August 2011 15:31

Recruiting for Home Haemodialysis

Written by Steve Bone
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“There are approximately 21,000 patients currently receiving dialysis treatment in England. The number of patients requiring renal replacement therapy (dialysis or transplantation) is increasing at around 4% per year.

It is estimated that around one third of dialysis patients (7,000+) may choose to opt for dialysis at home. In particular NICE have previously suggested that 10 to 15% of dialysis patients may opt for home haemodialysis (whereas currently 2% do so). In theory, more than one third of patients could choose home therapies provided it was clinically appropriate for them.

Work by NHS Kidney Care on reference costs for dialysis showed the annual costs of home haemodialysis to be up to 25% less than in-centre dialysis, based on data returns from 16 units.

However, releasing savings in practice will depend on a range of factors including the set up costs, treatment regimen, and training and support needs in any individual case. As referenced by NICE, previous studies have demonstrated that initial costs of home haemodialysis are recouped within a period of approximately 14 months. ”

Now this makes very interesting reading. The fact that the potential that has been identified is so large, and with the long term costs savings as a benefit, there is clearly a need for a more focused recruitment of patients for home therapies. I’ve gone on about this before, and suggested that a more co-ordinated programme of recruitment should be developed, but certainly locally, I don’t see the relative volume of recruitment going on. In fairness, the local unit is very busy and short staffed, so most of the time it’s ‘heads down’ and crack on with the job in hand to get the patients through door. All understood and I don’t envy their daily task. BUT… there is material around that talks about the real and valuable benefits to patients and the NHS alike, but in truth, you have to rummage around on the web to find it.

How about a simplified brochure that gives guidance and answers basic questions, or a well thought through web site, that can be used to recruit new and ‘eligible’ patients? (The NHS Kidney Caresite is a good start) Give them something to read while on dialysis on their unit, and let them ask questions. Make use of, and develop more patient advocates that can talk to potential home patients so they can engage and help with the recruitment process, nothing better than a chat with somebody who’s been there, done it and got the t-shirt!

Overall, and above all, widen and raise the volume of the debate, information, benefits and more. With the advent of smaller and easier to manage dialysis machines, the opportunities to recruit are increasing.

Here’s some useful links:

NHS Kidney Care
NHS Kidney Care Matters
Improving choice for Kidney Patients – a report produced in February 2010

Then there is the less than useful view:

NICE press release about patient choice for dialysis treatment – 27th July 2011 – very focused on how much money can be saved by promoting PD more strongly –  The document is supposed to be about choice? Could do with an equally weighted document about the benefits of home haemo!

... http://mydialysis.co.uk/blog/2011/08/12/recruiting-for-home-haemodialysis/

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Friday, 12 August 2011 11:44

Missed diagnoses

Written by Kamal Shah
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Medicine is not an exact science. A lot of it is subjective. Doctors have to rely a lot on their experience and the results they have had with other patients. Lab test results rarely tell the entire story. It is not a set of mathematical equations that they can follow to get the desired results.

We often blame doctors for missed diagnoses. "Why didn't they detect this earlier?"

It is easy for us to say this in hindsight. But at the time of diagnoses, a multitude of factors go into making a decision. It is not at all easy for doctors. They have to strike a fine balance between making a diagnosis based on the available facts and prescribing too many tests that may help in arriving at a better, more informed decision.

Another major problem is the number of patients doctors in India see. Most doctors that I go to are so busy that I have to often wait for a long time to get to see the doctor. And after all the wait, you get very little time with them. With all this, how much time would they have to read up or research on your particular case?

I have realized these problems and changed my attitude towards doctors. Even though an important diagnosis was missed in my case as well.

... http://www.kamaldshah.com/2011/08/missed-diagnoses.html

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