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I have posted a little about keeping your body fit on the BigD before, but nothing about exercising our most important organ, the brain.  I have just read a life-changing book: The Brain That Changes Itself, by Norman Doidge.  I very much enjoy reading about the brain, how it works, what affects its performance, what motivates us, how and why we choose.

But this book took me to a new level.  Doidge explains through real-world examples and studies, how our brains are continuously changing, no matter what our age.  It begins by showing how people who have lost parts of their brain through stroke or trauma can with training, have other parts of their brain take over the lost roles.

He also shows that our brain, like the rest of our body, is dominated by the Use it or Lose itrule.  We all know this from experience: if you stop speaking or writing another language, or playing an instrument, pretty soon you can’t remember words or notes and you have to do a little relearning.  This is because the unused neuron processing power has been reassigned to somewhere else.  Even for parts or your body, like if you cover an eye, or bind a limb for a period, the neurons associated with controlling those parts stop getting stimulated, and are fairly quickly recruited or absorbed by other, busier parts of the brain.

Happily, the reverse also applies: when you practice the language or the music, or remove the cover or binding, the brain fairly quickly reassigns the neurons back to that function.  Doidge talks a lot about techniques some very smart people have developed to preserve the brain’s flexibility and extend mental life spans.  Mostly this is done through exercise – brain exercise.

I know my brain has slowed down a little since I started the BigD.  Some of this I put down to the physical difficulties that come with chronic kidney failure, some to getting a little older.  But how much had I slowed down, and could some of these exercises speed me up again?

I decided to give it a try.  There are several brain exercise products available that have been proven to increase IQ, fill in gaps in performance and generally rejuvenate brains.  Doidge devotes a chapter to Michael Merzenich’s Posit Science ® Brain Fitness Program (Google it for a local agent, or Amazon).  It focuses on sounds, words, language and memory.  It is pricey, but, hey, we’re talking about improving your brain!  Using it for about an hour 3 times a week for 3 months has been shown to amongst other things, improve memory by an equivalent of 10 years!

I was about to buy it when I discovered Lumosity, a brain games developer that has a range of brain training courses that are also available on the iPhone.  It’s not Posit Science, but it’s a good starting point.  The courses bundle several games of different types into groups that you work through each day.  Games work on brain areas like speed, memory, attention, flexibility and problem solving.

I have been playing these games now for about two weeks, and while it is fun, it has also made me realise how much slower I had become.  At the moment, if my brain was my body, I would be one of those slightly tubby guys with man-boobs.  After each game it tells you where you are amongst all other players: my speed brain percentile began at 60% and the latest is 68%.  I’m not telling you how I compared for arithmetic.  The good news is that just like getting your body fit, brain improvement is relatively quick and noticeable.

Lumosity is a cheaper too.  There is a 5-session free trial, then it costs between US$6.70 and $15 per month.  You can use it with your PC or Mac, but I like the iPhone access: I can exercise on the train, waiting for meetings or the doctor, wherever.

One other thing that becomes clear quickly when you start regularly exercising your brain: brain function is dramatically affected by how you feel: if you slept badly or you feel a little down or grumpy, your scores suffer.  If you have had a good sleep and feel that all’s right with the world, you can ace the games.  Sometimes.

Once I have exercised enough to get rid of my mental man-boobs, I will put my name into the user group so I can have a friendly competition with other users.  Maybe you’d like to join me?

(I haven’t forgotten Posit Science.  I will save that for when I graduate from Lumosity!)

... http://bigdandme.wordpress.com/2010/10/08/keeping-brain-fit-on-dialysis/


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Wednesday, 06 October 2010 07:56

Nephrolife - Bangalore's one stop renal shop

Written by Kamal Shah
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During my recent trip to Bangalore, I got a chance to visit Nephrolife. It wasn't planned however. On my way to Wonder la, in the middle of a traffic jam, I happened to notice their ambulance which was right next to our car. I quickly noted the telephone number and called to check if they offered nocturnal dialysis in the hope of utilizing this facility the next time I visited Bangalore. The receptionist transferred the call to the MD, Shriram Vijaykumar.

Shriram invited me over to the center the following day. I went over to Nephrolife on Sunday at around 12:30. They had a few doctors visiting to see the center as well. I met Dev Roy, the Chairman and nephrologists, Dr. Topoti Mukherjee and Dr. Sushma Rani apart from the other members of the team. They really have a fantastic team. Shriram and Dev showed me around the center and I had a great discussion about a lot of things - both related and unrelated to dialysis! Both of them are extremely passionate about providing quality care to renal patients.

Nephrolife is a state of the art center which has the entire gamut of renal services from dialysis to access surgeries to even pre and post transplant care. They have a complete set of specialists on board to take care of every need of the kidney patient.

Their hemodialysis center is extremely high-end with very comfortable dialysis chairs (Shriram actually made me try one!), each attached with its own IP TV that boasts of hundreds of channels and a large collection of movies.

They also take care of all the ancilliary needs of patients like a dietician and a psychologist.

They have also integrated technology very well with the center. Each ambulance is equipped with a GPS. Doctors' notes are also instantly transmitted to a computer using a special note taking device.

The one thing I found surprising is the price of a dialysis session. I couldn't help wondering how they are able to sustain the operation at such low prices! If they are able to keep the prices low and yet run the company, their years at Carnegie Mellon and University of Chicago have not been wasted!

Nephrolife, I am sure, is a welcome change for dialysis patients in Bangalore. They started this center in February this year and already have close to 70 patients which is very commendable. They soon plan to expand to other cities in India. Here's wishing them all the best!

... http://www.kamaldshah.com/2010/10/nephrolife-bangalores-one-stop-renal.html


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Friday, 01 October 2010 21:25

Re-nopain - I spoke too soon!

Written by Kamal Shah
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Yesterday, I wrote about how I used Re-nopain, the anesthetic ointment that I used successfully before cannulation. Well, I think I spoke too soon.

I used it last night too and there was pain during cannulation.

I will probably use it for a couple of more days and then decide whether I want to continue to use it or not.



... http://www.kamaldshah.com/2010/10/re-nopain-i-spoke-too-soon.html


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Friday, 01 October 2010 10:08

Re-nopain works like magic

Written by Kamal Shah
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I have been using Lignocaine just before cannulation. I take a little bit in an insulin syringe and then inject a little in both the sites - arterial and venous and then cannulate. So, even though the lignocaine injection itself stings a bit, the cannulation becomes painless. After all, kuch paane ke liye kuch khona padta hai!

Recently, Jairam brought me a tube of an ointment called Re-nopain. It had lidocaine and prilocaine. I think its composition is similar to the Emla cream available in the US. You basically have to apply it an hour before cannulation and then it is supposed to act as a local anesthetic.

The advantages are two fold - first and foremost, there is no injecting, so it is totally painless and second, since you are not injecting, the damage to the fistula is minimized.

I have been meaning to try it for a few days now but kept forgetting until I was about to cannulate. Jairam then asked me to put a reminder on my phone that repeated every day! I did.

Yesterday, I put the cream on both the sites an hour before cannulation. I was very apprehensive about the pain.

Fortunately however, the cannulation was totally painless!

I am going to use it again today and if it works, I will finally stop using lignocaine injections!

... http://www.kamaldshah.com/2010/10/re-nopain-works-like-magic.html


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Thursday, 30 September 2010 12:03

Overwhelmed!

Written by Kamal Shah
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It was threatening to be a bad birthday. Personal problems plagued me right until the previous evening. I almost cried. I started dialysis and was tossing and turning in bed until I fell asleep probably around 11.

Suddenly, the lights in my bedroom turned on. Jairam, the dialysis tech stood next to my bed and did a jig and then wished me. As I shook his hand, he signaled to someone. I wasn't wearing my spectacles so I couldn't make out what was happening. I was also half asleep. But I could figure out that there were some people coming into my room, one by one.

I was wondering what the hell was happening!

I reached out for my spectacles. I could hear someone giggle on seeing this.
When I wore my spectacles, I realized that it was almost the whole Nephroplus team in my bedroom!

I was totally surprised! They had all come to wish me at midnight!

They brought an eggless pineapple cake and made me blow the candles and cut it - all while on dialysis!


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Then Sandeep played a video on his laptop that had pictures of me right from when I was a baby of probably a few months old to recently with background music. The video ended with a slide that said "We all love you Kamal"! That was really so sweet!

They also got me some flowers and a gift.

I was so touched. No one had ever made so much effort to make me feel so good! I was truly overwhelmed!

This is one thing I will never forget all my life! Thanks again, Nephroplus!

I did not sleep much after that. I got up early too and went to the temple. I was alone there which made the experience really good.

I then went to - where else - Poorna Tiffins and had my fill of 'Nayee Idli'. I am actually tempted to praise the idlis here but I know that if I write one more line about these idlis, you guys will kill me!

I took the day off from work. I relaxed at home in the morning, went over to Nephroplus in the afternoon to thank them for their wishes. Almost all the patients there had also called me during the day to wish me (one of them actually called at midnight too!).

I had dinner out with my parents.

When I got back, I quickly started dialysis with Jairam's help. Just as I was about to go to sleep, Srinivas came with a couple of his friends. They got balloons, a cake and gifts too! So, I again cut the cake - while on dialysis! We chatted for a while and then they left.

This was the best birthday I have had in recent times!

... http://www.kamaldshah.com/2010/09/overwhelmed.html


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Sunday, 26 September 2010 20:45

Back after a great trip!

Written by Kamal Shah
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I got back last night after a great trip to Bangalore.

We reached Bangalore Saturday morning and headed straight for Wonder la. The traffic was really bad. It took us a good one and half hours to get there. The folks from Bangalore and Chennai had already reached.

We bought our tickets and went in. Some of us were interested in taking the dry rides. I was only interested in the water rides! After taking a dry ride, we grabbed a quick bite and then went to the the changing area, took some lockers and changed into our swimming gear. Wonder la is the only water park I have been to where they do not insist that you wear a swimming costume in the water area of the park. You can wear practically anything. So, most males wear T shirts and shorts. Females wear anything from salwars to saris!

We first hit the wave pool. They have an artificial beach like area - no sand though, which is kind of good - and then every hour, they simulate waves for about 15-20 minutes. Fun overall!

We then went to something called a Play Pool. They have this big pool, mostly shallow, with water spraying and falling from everywhere. Then there is this huge bucket placed at a height into which water keeps filling and then at one point, it suddenly tips over throwing a large amount of water at great pressure on you!

Then there is the usual set of water slides and rides. Every hour, for fifteen minutes or so, they also have a Rain Disco where, inside a big hall, they simulate rain with good music where you can dance. The experience was good. The music could have been better though.

There are two restaurants which serve food that is only manageable. This is one area they can really improve. Not only the variety offered but also the taste. One good thing about the park is that the temperature of all the water is controlled and that too using solar heaters.

By the time we left the park, it was close to seven. We got back to the city, had dinner at a restaurant and then got back to the hotel. It was midnight by the time we slept.

The next day, my friends decided to visit a waterfall called Shivanasamudram, about a three hour drive from the city. I opted out. The falls turned out to be really great. Something for next time!

I spent my day relaxing, met with someone on Peritoneal dialysis and then visited NephroLife, a renal therapy center. More about this soon.

What I like about these short trips is that there is not too much planning necessary. You can do them at short notice. The excitement and anticipation is still there. I also don't have to miss more than a night of dialysis. I really must do more of these!


... http://www.kamaldshah.com/2010/09/back-after-great-trip.html


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Friday, 24 September 2010 03:04

Dialysis and the ins and outs of buttonholing

Written by Greg Collette
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Do you know the Nine Inch Nails’ song “Hurt” sung by Johnny Cash?  It is a very moving and disturbing song about the effect on drugs on the singer.  All of us BigD members can especially relate to the first few lines:

I hurt myself today
to see if I still feel
I focus on the pain
the only thing that’s real
the needle tears a hole
the old familiar sting
try to kill it all away
but I remember everything

For the BigD, especially when we’re new to it, the needles loom large.  But they need not.  One of the ways you can cut needling down to size is buttonholing.

What is buttonholing? For dialysis, it has nothing to do with sewing machines, or grabbing someone’s attention.  It is a powerful technique for getting the needles into your fistula with minimum pain and minimum damage.  I have written about it several times in earlier posts, but it is worth revisiting.

Chris, our unit manager is on sick leave, and we have been fortunate to have the country’s foremost experts in buttonholing, Anna Flynn fill in for her.  Anna and her colleague Annette Linton presented a slide show on buttonholing to the Renal Society of Australia in 2008.  It showed the what, why, when, where, who and how of buttonholing, and was so successful that it has become a key buttonhole teaching aid for both renal staff and for we members of the BigD club.

Anna and Annette’s presentation has some great shots of what the buttonhole track looks like in the fistula wall, as well as some quite graphic ultrasound images (fortunately in black and white, so not too gruesome).  Check it out:

Basically, buttonholing is inserting the needles into your fistula in the same spots, at the same angles every session.  The needles gradually wear a track through the skin and through the fistula wall.  After about two weeks, the track is so clear that you can switch from sharp to blunt needles, and it can become almost painless.

Buttonholing is not new.  I started using it about 12 years ago, after reading about its success in Europe and having it recommended by the then unit manager, Anna.  I must say I hesitated. To me it was counterintuitive to constantly use the same holes.  How would it ever close over and repair itself? Maybe it would pop open if I lifted something heavy?  What about in the shower or swimming, maybe I would wash off the scab and open the hole.  They seemed like reasonable fears to me.

But it clearly didn’t work that way for others, so I gave it a try.

I soon found that the body doesn’t work like that.  It seems to get used to the needles and, like with other parts of the body, creates the equivalent of a callous, or thick scar tissue to form a track into the fistula.  Since the track is usually less sensitive, there is less pain.  Also, the track closes quickly once the needle is removed and a little pressure applied, so bleeding stops within a few minutes.

I especially like using blunt needles – there is no chance of a blowout, they are just not sharp enough to push a new hole through the fistula wall.  In fact, unless to pick off each scab before you insert the needles, they won’t even go in.

Buttonholing works best when you do it yourself.  While sticking needles into yourself sounds a little outrageous, it’s not especially difficult.  The first time is the toughest. Ask someone you know needles well to talk you through it, and then take plunge.  You’ll get better and better as time progresses.  DIY also eliminates the stress of wondering if the person needling you will make a mistake.  You won’t make a mistake, because you can feel exactly where the needle is going.

So, you may still hurt yourself today getting those needles in, but with buttonholing, it’ll only hurt only a little.

... http://bigdandme.wordpress.com/2010/09/24/dialysis-and-the-ins-and-outs-of-buttonholing/


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Tuesday, 21 September 2010 16:24

Dialysis Centre Recommendation – Mesogeios, Crete

Written by Steve Bone
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This is a personal recommendation for the Mesogeios Dialysis Centre, just south of Iraklio (Heraklion) on the lovely island of Crete.

I have dialysed at the Mesogeios Dialysis Centre on two separate holidays a total of 8 sessions. On every occasion, the service and attention has been excellent. There are doctors on site at all times, and every patient is checked on every session. I was allowed to needle myself, as I prefer, although they do use short tailed needles, which can be a bind when self caring, but a minor issue.
As soon as you are on, you are offered a cooked or cold snack (ham and cheese toastie is ubiquitous) (oh, and they just called it toast!), plus tea, coffee or cold drink, olives, bread and a sweet snack if you wish.

Every dialysis chair has it’s own TV with satellite TV – and on my very first session there, live Premiership football was on and Pompey were playing – bliss! (Pompey, Premiership? Hey ho!)

On the first holiday on Crete I took their offered taxi service to and from the Mesogeios centre as I was about 40 minutes away. But on my last visit I hired a car, so improved journey and wait times. When you first arrive you are warmly welcomed by Maria or one of the other excellent staff. Mesogeios also arrange travel and sightseeing trips, so you get the brief on this when you arrive.

The Mesogeios location is great, just South of Heraklion in the hills. The centre has large picture windows in the direction you face while dialysing. Everywhere is spotless and well presented boosting your confidence.

And for family, if they come with you, they can relax inside with drink and food, or go outside and swim in their very blue swimming pool.

I’d thoroughly recommend the Mesogeios Dialysis Centre for dialysis. It gets you out to the Mediterranean in a hot climate, and with great facilities for your special needs.

Enjoy your holiday. (My next blog entry will be about where I stayed in the hills above Hersonissos in a fabulous friendly family run ‘hotel’, Creta Blue Suites, in the village of Koutouloufari).

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... http://mydialysis.co.uk/blog/2010/09/21/dialysis-centre-recommendation-mesogeios-crete/


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Wednesday, 15 September 2010 15:21

Changing the law on organ donation

Written by Steve Bone
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I recently signed a petition on the No10 web site, for a change in the law on organ donation to presumed consent.
As a dialysis patient, I signed this with what could easily be described as a vested interest at heart. Although, it is worth adding at this time that I have always supported organ donation – a long way before I experienced kidney failure. Indeed, when my father suddenly died just over 10 years ago, I asked that his organs be used, but in his case, the hospital were not able to use them.

Once the petition closed, I received the government response, which could be best described as ‘a bit of old flannel’. Effectively, despite this being a relatively hot topic, no real action to tackle the supply of organs was taken. So i decided to look at this further.

When you view the list of live, completed and rejected petitions on the No10 web site, there are a surprising number of them around this subject of donation. And, interestingly, there are a wide range of views, for and against a presumed consent change, and a number advocating other ideas.

Given that there will be a large number of views on this subject, any change in the law will upset many, as the current law causes upset in its own way through lack of supply.

Another school of thought on this is to charge doctors with asking the donor question at the point of a patient’s death, or whilst still on ventilation. But, this is likely to pressure doctors, and any data collected on this could be fudged.

Given that the NHS has been heralding for some time, a national records capability for patients, surely it would be easier to ensure GPs ask the question about being on the donor register, routinely at appointments with their patients, and this record or ‘state’ to be logged on the donor register. Part of the issue is around getting more people than the current 24% of the population to make the effort to become a registered donor, but a national campaign by GPs would reach a much wider audience on a 1-2-1 basis.

There is still the issue of education of families to individual wishes, but if this was discussed by GPs, then the topic, over time would become a live debate as more and more people would be exposed to a formal question about it.

We hear that many more than those registered would register, but clearly after many years of campaigns there is still a general reluctance or even apathy to making the move. Hand the question to people ‘on a plate’ and this changes the momentum.

And, of course there is the issue of the doctor who has to make the decision on asking the question of relatives about taking organs for donation at an emotional time. The government response to the original petition and others, is that they have employed more transplant co-ordinators. Is the role of asking the difficult question then one for the co-ordinators or somebody specially trained to do this.

I find it interesting that the GMC is advocating doctors have discussions with patients who have been diagnosed with a terminal illness on donating their organs when they die – so the school of thought is there in one form – but it is necessary to coach and train the doctors to deal with what is one of the toughest questions they may have to ask – despite the fact that in many cases, if the question has been handled sensitively the outcome may not be difficult at all and they will receive consent from the relatives.

We can continue to fight for radical change, which in this country means endless debate, argument and counter argument, or we can modify processes to make things better around the way they are. I would love the system to be presumed consent – but then I’m biased – or so I thought! So how about putting our energies into something practical rather than chasing a dream that has not been granted for some considerable time!

The original petition posting and government response is below.

change the law on organ donation.
This petition is now closed, as its deadline has passed.

We the undersigned petition the Prime Minister to change the law on organ donation. More details

Submitted by Miss Emily Caton – Deadline to sign up by: 06 June 2010 – Signatures: 1,714

More details from petition creator
Make organ donation opt out as opposed to the current opt in. The UK has about 18% donation rate, of which have an ‘opt in’ approach whilst countries like Sweden, Portugal, France and Austria all have an ‘opt out’ approach have donation rates between 90-99%. This will decrease organ donor waiting lists to a mere few days compared to months or even years.

http://petitions.number10.gov.uk/organoptout/

Government response
The Department of Health believes that as many people as possible who need a replacement organ should be given the opportunity to benefit from an organ transplant.

In 2008, the independent Organ Donation Taskforce examined the case for moving to an opt-out or presumed consent system. It advised against it and concluded that whilst such a system might have the potential to deliver benefits, it would present significant difficulties which might not bring about the desired increase in organ donation rates.

The Taskforce made a number of recommendations to increase donor rates, of which increasing the number of donor coordinators in hospitals was one. Since the start of the implementation of these recommendations, almost one million more people have signed up to the organ donation register.

The Department is supporting the action to increase organ donation in the UK. Encouragingly, steady progress is being made and the number of organs being donated is increasing. Time is needed for these recommendations to be worked through fully and to assess their success, before looking to change the system further.

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... http://mydialysis.co.uk/blog/2010/09/15/changing-the-law-on-organ-donation/

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