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The Hyderabad Kidney Foundation organized a patient support group meeting this evening at NephroPlus' East Marredpally branch. All of two people showed up. One of them was a transplant recipient. The only dialysis patient who came, came at 6 p.m., a full hour behind schedule and I suspect he came to get a missed Erythropoietin shot.

I honestly did not expect to get a huge a crowd. I expected around 10 - 15 people to come. So, I was way off. I probably misjudged the patients.

Here is how a hemodialysis patient probably thinks: "The three times that I need to go to a (expletive) hospital are the three worst times of my (expletive) week. And you want me to come on my day off to a (expletive) hospital!"

So, the patients are probably going to do everything they can to stay away from anything remotely resembling a hospital - let alone a standalone dialysis center! Hemodialysis also drains many of them out so completely that they barely have the energy to do anything. If they actually have energy left, why would they make an effort to go for a boring support group meeting?

We had informed a few PD folks too to come. The sole reason PD folks do PD are that they don't want anything to do with HD. Most PD patients are leading totally normal lives anyway. So they don't really need any support. So, why would they come for the meeting?

Where does that leave the support group initiative? Search me!

... http://www.kamaldshah.com/2011/04/those-on-hd-dont-have-strength-to-come.html


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Friday, 29 April 2011 10:12

Root vegetables and me

Written by Kamal Shah
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(Note: This post is best avoided by non-Jains. You just may not get it.)

I was born a Jain. Jainism is a great religion. Like all religions, Jainism has also been interpreted differently by different people through time. That is why you have sects and sub-sects. A common thread that runs through all sects apart from the basic principles is not eating root vegetables - potatoes, onions, ginger, garlic etc.

I have been an on-and-off eater of root vegetables. When I was diagnosed with kidney disease in 1997, I was off roots. I stayed like that through the first few years. I was fairly strict about it. I understood the significance of it and was a stauch follower of most aspects of my religion. Hence root vegetables were a strict no-no.

Over the years with kidney disease, I tried a lot of alternate therapies that claimed to cure kidney disease. Each came with its own diet restrictions. Fluid restrictions were of course always there. At times I was in a situation where the alternate medicine therapist would have one set of diet restrictions and the regular doctors (allopathic) would impose another set of restrictions. The only way out was to eat only what was allowed by the intersection of both diets! At one time, I was allowed only buttermilk and rice with a hint of moong dal for breakfast, lunch and dinner!

When you are subjected to such diet restrictions (especially with me being such a foodie), you take it up to a point. After that, something inside you snaps. You can take it no further. And then you rebel. You say "Fuck You" to every diet restriction and go berserk. This is one of the things that happened to me. One day I decided to start eating roots.

I still eat roots. Some people in my family ridicule me for this. I honestly cannot help it. They have not been through what I've been through. As I keep saying kidney disease is more of a mental disease than a physical disease.

Coming back to Jainism, I read once on a forum for Jains, that unfortunately Jains of today have made Jainism a religion of "You can't do this. You can't do that.". Full of restrictions. Focussing too much on what you eat and drink. We have reduced it to a diet. There are so many other beautiful aspects of Jainism like Aparigraha and Anekantvad but we tend to only focus on the food part of it. Today a Jain is identified by "No Onion No Garlic" which is ridiculous.

I am not for a moment saying that eating root vegetables is right. What I am doing is wrong. No doubt about it. However, for a moment, look at the history. Then judge.

... http://www.kamaldshah.com/2011/04/root-vegetables-and-me.html


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The Hyderabad Kidney Foundation is organizing patient support group meetings on the last Saturday of every month at 5 p.m. at one of the centers of NephroPlus dialysis centers. This month is the first such meeting. Its on Saturday at 5 p.m. at NephroPlus' East Marredpally center. You can get directions to the location here.

What will happen at these meetings?

Well, first there will be introductions which could be as simple as "Hi, I am Kamal" or as detailed as "Hi, I am Kamal, 25 years old, on hemodialysis for x years, followed by PD for y years, transplant for z years. I am currently working for ABC company and my hobbies are e, f and g". Totally up to you!

Then I was thinking one featured patient will share his/her story and we could have a brief Q&A. Then we could share common problems and solutions. In the end we are trying to rope in a nephrologist/dietician/expert to talk a little about one important topic followed again by a Q&A. We'll round it off with tea and biscuits. All in all, an hour and a half max.

Of course, we're open to suggestions on the format and we'll go with the flow and keep tweaking it to suit everybody's taste.

So, if you're on Hemodialysis or Peritoneal Dialysis, have received a transplant, have donated a kidney or have any other type of kidney disease and are around Hyderabad / Secunderabad on that day, we would be happy to meet you!

... http://www.kamaldshah.com/2011/04/hyderabad-kidney-foundation-patient.html


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Monday, 25 April 2011 20:10

Blood leak again

Written by Kamal Shah
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It happened again last night. Thankfully it wasn't anywhere close to last time. I awoke feeling something wet on my arms. It was around 3 in the morning. To my horror I realized it was blood. I switched on the light and assessed the situation. As usual it was the arterial needle from around which blood was oozing out. The sleeve of my T Shirt was also wet with blood. It wasn't as bad as last time but there was enough blood for me to be concerned and wake Jayaram.

Jayaram removed the plasters around the arterial needle and used a piece of gauze to clean the blood around it. He then pushed the needle a little more inward and taped it again. We watched for a while. It seemed all right. We went back to sleep.

It is incidents such as these that have me worried. There are times when I dialyze alone. What if such a thing happens then? I am not sure if I will be able to manage alone. With only one hand to do things (the other hand is the one the needles are in - you can't do much with it) and blood oozing out, it can be quite a situation.

My parents made me promise that I would bever dialyze alone when they were on their US trip. Good thinking. Empty bravado in matters such as these can be disastrous. Well, to be fair to me, it is not to display courage that I dialyze alone. It is only for convenience. Jayaram comes very late sometimes. And he has to leave at 5 in the morning. That sometimes leaves me very little time for dialysis - and sleep. If I start on my own, I can get both - good dialysis and 7 - 8 hours of sleep. Also he does not come on Sundays and I have been wanting to dialyze on Sundays as well. This results in me dialyzing all by myself the entire night.

But with things like these happening, I am not sure I should take such liberties at all.

... http://www.kamaldshah.com/2011/04/blood-leak-again.html


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Sunday, 24 April 2011 09:43

The criminal act of not educating patients

Written by Kamal Shah
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Today, I went for the monthly distribution of coupons that subsidize dialysis for people who cannot afford it by the Jain Dialysis Trust. These visits are truly humbling. When I see the work the trust is doing, my head simply bows down before them. It is not easy to save a human life. Yet, these people have saved at least a couple of hundred.

I happened to meet a young guy, on dialysis for a couple of months now. I introduced myself to him and chatted about his background and history with renal disease. I then asked him about a transplant. He said he was not told by his doctor about that option but had heard about it and was exploring it.

I wonder why he wasn't told about that option? Was any education given to him at all about his options? Was PD mentioned? Or was he simply condemned to a life of hemodialysis??

Who will educate patients if it is not for the doctors? Every patient does not have access to the internet. Even those who do may not be proactive enough or feel the necessity to look this up.

A simple talk about the different options doesn't take too long. Is that too much to ask? Tell me, someone please!

... http://www.kamaldshah.com/2011/04/criminal-act-of-not-educating-patients.html


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Saturday, 23 April 2011 05:12

Grim truths that nobody wants to talk about

Written by Kamal Shah
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I met someone today. I'll call him Vishnu. He has been on dialysis for the last seven years. Like most other people, he has spent a fortune on his disease (a few lakhs). His parents died a few years back. He has a brother and a sister. Both don't feel the need to look after him.

Vishnu gets dialysis under the government's Aarogyasri scheme. He was all praise for the quality of dialysis offered at the Aarogyasri unit run by BBraun at Secunderabad's Gandhi Hospital. He said he used to get a lot of chills at other hospitals where he paid and got dialysis but after shifting to Gandhi Hospital, he has not had that problem. All patients get very good quality dialysis, the full four hours.

Vishnu now stays at a private Old Age home even though he is only 40 years old. There he is able to get the salt restricted diet he needs. He pays around Rs. 3,000 per month including food. He is now running out of money as he is unable to work. His Hemoglobin is 6 (a dialysis patient's should be between 11 and 12.5). He used to get Erythropoietin from the Aarogyasri unit. However, it has stopped for the past few weeks. He does not get iron injections, something necessary to get his blood counts up. He used to work as an accountant at an office but had to discontinue due to his health.

Vishnu wonders why he has to pay the full fee for the bus pass when he travels to the dialysis unit when patients having other ailments get a huge discount. Ditto for blood from the Red Cross. Thalassemia patients apparently get blood at highly subsidized rates from the Red Cross. Why can't the Red Cross provide blood at the same rates to hemodialysis patients? Medicines are another pain point. Aarogyasri does not cover the medicines a dialysis patient has to take. They have to buy these medicines from pharmacies and these can be very expensive.

There is absolutely no doubt that the govenrment's Aarogyasri scheme is a revolutionary scheme and that such a scheme exists in today's India mired in corruption scandals of increasing shamelessness is a miracle. Yes, the poor can now get dialysis. But, how will they get to the center? Yes, the government is doing an excellent job in providing dialysis and preventing thousands from dying. Please also do something about their other basic needs. This will not be a huge burden for sure. But it will help people lead lives that bear some semblance to normalcy.

... http://www.kamaldshah.com/2011/04/grim-truths-that-nobody-wants-to-talk.html


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Friday, 22 April 2011 11:04

The Money Pit of SEO

Written by Steve Bone
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Ok, a departure from my normal blog posts. Google has developed a monster with the SEO machine. If you run a small site, and your subject/product/service is a low key item then you may stand a chance of ranking on Google at some point, but if you are in a bigger industry, the competition to rank for your key terms will be cut throat.

Now Google, apparently frown on obvious link purchasing, and will penalise sites that do just that, yet the money that is being invested by businesses through SEO agencies to go out and buy ‘discrete’ links to look like they have been built naturally, is huge. In fact, it is fair to say, that unless you have fairly bottomless pockets, to not only build your ranking position, but maintain it when you get there, then you will never feature, and this is alos likely to be on the long tail terms also.

Frankly it’s a monster, and a farce. All that Google spout about impartiality and good ethical backlinks showing a site’s true worth, is a complete falsehood.

Most users are getting to grips with the fact that the search page shows bought placement and apparently FREE placement. Well, be warned, the top ranking sites in the FREE section have been bought also. It’s a moneypit, and a vast majority of big businesses have fallen for it and will continue to pay vast sums for ever more!! Maybe one day they will wake up – or will they be so scared their competitors will continue to spend they must continue too? Is this chicken or egg?

Hey, I’m lucky, my keywords are not that big, so I get to page one completely free of charge. I’d hate to be running a car insurance or mobile phone business!!

(UPDATE) – Interesting how all my posts get ranked immediately on Google as a latest feed, but for this subject, being negative, no where in sight! Is that really a surprise as it is a criticism of Google?

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... http://mydialysis.co.uk/blog/2011/04/22/the-money-pit-of-seo/


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Friday, 22 April 2011 10:45

Needle Size vs Pump Speed

Written by Steve Bone
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A new development on the unit in the last week. After dialysing for eleventy-ten years and self caring throughout that time, using 15g needles and high pump speeds, a ‘specialist’ nurse has now dictated that I should be using 14g needles with a pump speed in excess of 400ml/min. I currently run with  a pump  speed of around 470ml/min which tends to net out at a flow of 415ml/min. Interesting to read all the studies on this issue, that conclude that the needle size at 15g has now detrimental effect at high pump speeds. The only issue that manifests itself is a higher venous and lower arterial pressure, and this is primarily down to circuit pressure. I see no need therefore to change my needle size to 14g especially moving on to daily dialysis. My fistula, touch wood, has lasted for over 20 years, so I am adding to the risk of loss with daily dialysis without compounding the issue. Anybody else had a similar issue to address?

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... http://mydialysis.co.uk/blog/2011/04/22/needle-size-vs-pump-speed/


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Friday, 22 April 2011 10:35

NxStage Training

Written by Steve Bone
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Well, I now have dates for training on the NxStage. All being well, and with a following wind downhill, I start on the 15th on the unit and then the machine is installed at home the following week and I am supervised in the community (!) for 3 days and then set free!!  I will need to be signed off on the usual competencies for good dialysis practice as well as the competencies for the NxStage. I just need to consider that the bad habits of 20 years of self care are not too at odds with those competencies! I guess all the short cuts I take in prep etc to save time, albeit safe to do, are parked for now! Although in truth the shortcuts I take are only relevant to the Fresenius 4008. I will have to learn a whole stack of new ones!! :-)

I am also going to have a week of daily dialysis on the Fresenius in May, which will be a good test and the blood result from that will not only help with drug dosage for InnoHep and Renagel, but also provide good comparisons for the NxStage so I can really judge what true benefits I am getting.

More soon!

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... http://mydialysis.co.uk/blog/2011/04/22/nxstage-training/

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