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Sunday, 10 June 2012 10:47

When did India lose her innocence?

Written by Kamal Shah
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This morning, a friend posted this video on Facebook:


Immediately. memories of childhood came back to me. Ha, those were innocent times! Such a sweet video. I often wonder where that innocence has gone? India has changed. Indians have changed. We have changed.

I remember the times when my whole family, my extended family comprising of my father's brothers, their families, their cousins and their families used to meet so often. Most of us stayed at the Chandralok Complex near Secunderabad's Paradise X roads. Every now and then we would all meet for lunch or dinner and have such a great time together.

Everyone was less busy. We did not have so many luxuries. We had the 'bare necessities'. Still we were all so content. We were all truly happy. We had one vehicle per family - some had a car, some had a scooter. Still, no one complained.

When I think about when all this changed, I feel it is when Manmohan Singh and Narasimha Rao brought about liberalization in the 90s that things changed. After this gradually, we all suddenly grew up as a population.

I am not for a moment suggesting that it was wrong or not good for liberalization to have happened. But it did have a flip side as well. India, as a country grew up then. And lost her innocence.

... http://www.kamaldshah.com/2012/06/when-did-india-lose-her-innocence.html


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Monday, 04 June 2012 20:48

Patient support group

Written by Kamal Shah
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For the last two months,  a small group of dialysis patients has been meeting once a month to discuss mutual problems and share tips on coping with kidney disease. We meet at NephroPlus' East Marredpally center at 5 p.m. on the first Saturday every month.

The concept of a support group is really great. Only someone on dialysis can understand what fluid restriction means. Only another person on dialysis can understand why I never keep a bottle full of water near me. There are these very minute, specific things that people on dialysis share which nobody else can even begin to imagine and think about.

It is not a very structured discussion. It is more of an informal sharing of problems and solutions. And yes, invariably, 'mind issues' come up once in a way.

The way ahead, I feel, to make it more meaningful by having a topic and may be an expert speak and answer questions followed by a discussion.

Getting more patients to participate is important. The trouble is many dialysis patients are overwhelmed with their day to day problems. They have no time or inclination to get involved in things such as support groups. The concept is generally still alien to our society. People don't see the benefit. So, they probably don't like the idea of going on their non-dialysis time to discuss - of all things, dialysis!

There is still an element of denial among many patients. I have talked to some patients who don't want to feel like they're patients and they feel they're reminded about their 'patient' status. Going for these support group meetings makes them feel like there's something wrong with them!

What I would like to say to them is that there is nothing wrong in being a patient. It is not something you did wrong that you have to be ashamed of. It is a reality of life. The sooner you accept it the better it is for you. Talking to other patients helps me cope with my disease. I am sure it helps others as well. When I talk to others having similar problems as me, it reinforces the fact that I am not alone facing this. There are others like me as well. This can be a very powerful feeling.

If you are on dialysis and would like to join us, please walk in to the NephroPlus East Marredpally center on the first Saturday of every month at 5 p.m.


... http://www.kamaldshah.com/2012/06/patient-support-group.html


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Monday, 28 May 2012 01:29

Holiday Dialysis – across the world

Written by Greg Collette
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Julie and I flew from Melbourne on 6 May at midnight and after a three-hour break in Hong Kong we landed in London on 7 May at 4pm.  Allowing for the time zone jumps, that’s about 24 hours in the air.

A few weeks earlier I spent three weeks in hospital with some bug and my haemoglobin had dropped to 7.  It was around 9 when I got onto the plane.  We debated whether I (we) should go at all, but my health was improving and frankly it is always easy to find an excuse not to travel.  If you give in, you will never go anywhere, so we decided to push on.

I rarely sleep in planes, and dread long hauls. True to form, I staggered bleary eyed through UK Customs and passport control feeling weak and tired.  Luckily our no. 2 son Liam was there to meet us, and he managed all the heavy lifting (not just at the airport, but pretty well every day!).

We drove to his flat and I gently lowered myself onto our bed for a nice 12 hour snooze.  Julie and Liam were out and about, on a long walk to Regent’s Park and some dinner before coming home to bed at a much more respectable 10pm.

London – Diaverum Forest Hill

I was booked into dialysis at Diaverum Forest Hill the next morning at 0730, by which time I was awake, if not firing on all cylinders.  As you well know, dialysis is a must show activity, no matter how you feel (no option to call in sick!).  Forest Hill was about 40 minutes away by cab (or two trains, one underground, one overground and two short walks) in South London.  I chose the cab (₤30 from St Johns Wood) and arrived at about 0720 complete with backpack full of goodies.

The Forest Hill unit has 20 seats and is busy all the time.  They very graciously moved someone to an afternoon session so I could dialyse as early as possible after I arrived (I arranged this before we left home).  Though I didn’t feel like it, I still put in my own needles (it is the one area of control you have no matter where you dialyse – and you only have yourself to blame if you stuff up), and watched closely to be sure all the settings were as specified by my unit (they were).

Mihaela, the Deputy Nurse and the staff were very friendly and helpful.  The other patients watched and returned my nod, but remained non-committal.  But no matter where we come from, we are all in the same boat and with so much in common, things soon warmed up.

After a couple of naps, a cup of tea and my snack, it was 1040 and time to go home.  I felt much better and was ready for the train trips home (accompanied by both Julie and Liam).

I eventually had seven sessions at Forest Hill, mostly starting at 1730 (with the occasional machine failure pushing that out an hour or so).  It was a very good experience and I gradually felt like I knew the place.  The only hassle was the distance from where we were staying – forty minutes plus each trip (trains one way, cab return).  Next time I will arrange for a more convenient distance to maximise our holiday pleasure (if you can’t do that on holidays, when can you?).

Forest Hill is a private unit and charges a few hundred pound per session.  Go to http://diaverumholidaydialysis.com/wp-content/uploads/2011/03/UK-London.pdf for details.

Within about three days I was feeling pretty good – better than when I left.  I felt absolutely justified in deciding to travel.

Oxford – Churchill Kidney Unit

At the start of the second week, we drove to Oxford, history mecca and stepping off point for The Cotswolds and all parts west.  I had booked in for two sessions at the Oxford Kidney Centre, which is an NHS Renal and Dialysis centre.

From the outset the staff at the dialysis unit were very helpful.  I spoke to Lin, the Unit Manager on the phone from Australia and she immediately offered me spots on the Tuesday, Thursday and Saturday Twilight shifts.  Later Allie Thornely, the Renal Dialysis Matron, told me they are very positively disposed to supporting holiday patients and can be flexible on the number of days available.  This is a great help when planning a UK holiday, because Oxford is so central for touring around the south of England.

The staff were very welcoming, friendly and competent and were happy to do that little extra.  My only (minor) issue is that all dialysis is on beds, not chairs, and I find it difficult to sit up to do things (like computing).  Beds notwithstanding, I felt very confident and safe and would certainly return should the opportunity arise.

The treatment was free (reciprocal agreement with Australia) and there were no other charges.  Go to http://www.oxfordradcliffe.nhs.uk/forpatients/departments/renal/kidney/kidney.aspx for contact details.

Stockholm – Dialys Unit Södersjukhuset

I emailed Eva Regnell, the Coordinator of dialysis at the Södersjukhuset Njurmedicinska kliniken (South Hospital, Renal Medicine), part of the Karolinska University Hospital.  Again, she immediately offered me holiday dialysis spots of my choice.  Initially, I booked only one session on Saturday 19 May, because I didn’t know if they offered Sunday dialysis.  I would have preferred both days because of the long gap coming up on the return trip home.  I asked during the Saturday session and found they have a small group that dialyses on Sunday, which I was allowed to join.  Very accommodating.

The unit is very centrally located in on Sodermalm, easy access by bus or cab.  It was just 4km from our hotel.

The unit is a very slick operation, with 30 beds (no chairs). Staff are friendly and competent and I felt very confident and safe.

A couple of things I’d not seen before:

Blunt Fill Needle – ideal for scab removal

  • They use special bull-nosed needles, called BD Blunt Fill needles to scrape off the scabs if you are buttonholing.  They are still sharp, but not so pointed, and are quite effective.

Scooter-powered travel between wards

  • The hospital is so big that each ward is issued with a scooter so they can get around quickly.  Very amusing to see a staff member zing past.


Again, I would definitely return if the chance arises.

While the treatment was free (reciprocal agreement with Australia) there is a 370kr ($50) admission fee for each session (dropping to 200kr ($28) for the third and subsequent sessions).  Go to http://www.karolinska.se/en/Departments/Departments/Renal-Medicine/ for contact details.

(I have email addresses for each centre, but for privacy reasons will not publish them on this post.  Please feel free to contact me for more.)

I am very much looking forward to my next trip.

... http://bigdandme.wordpress.com/2012/05/28/holiday-dialysis-across-the-world/


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I read this blog post yesterday by Sharon Whipkey about going on a holiday to Italy to her daughter's house. Sharon  went with her NxStage System One, did not have to miss her regular dialysis, did what normal people would do and probably, did not have to watch her diet and fluids! Sharon says, "It is a small miracle to be a dialysis patient and travel any where without going in-center for therapy."

So true!

The fortunate people of this world who have access to the NxStage System One are living their lives fully without any restrictions on travel. Yes, I am happy for my access to nocturnal dialysis and the ability to lead a normal life in terms of work, exercise, diet and fluid. But, like all humans, I am greedy. I want more 'normal' too! I want the ability to travel unhindered.

My parents are back from a fantastic trip to Darjeeling and Gangtok. I had half a mind to go. The problem was the usual one. The closest dialysis center was a good three hour drive away from these places. Not only that, I would need to dialyze in-center and that too not daily. Which means I would have diet and fluid restrictions. Which means my holiday would suck!

To me a holiday is not a holiday if I need to watch my fluids and diet. A holiday is not a holiday if I need to spend 4 - 5 of my waking hours on the dialysis machine every other day!

The NxStage System One solves all these problems. You can get nocturnal dialysis on a holiday in the comfort of wherever you are - a hotel room, a friend's house or even down a river!

The thought that is going through my mind at this point is this: Give me the NxStage. I will not ask for Eculizumab.

Eculizumab is the only way I can get a successful transplant. Without Eculizumab, I cannot opt for a transplant because my primary disease atypical HUS will recur (90% chances). With Eculizumab, the chances of success are 90%! The drug is not available in India and even abroad, the cost runs into crores of rupees.

However, I promise, if you give me the NxStage machine, I will never ask for Eculizumab. I will not ask for a transplant. I will happily spend what's left of my life on this machine. I swear.

... http://www.kamaldshah.com/2012/05/give-me-nxstage-system-one-i-will-not.html


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Tuesday, 22 May 2012 20:27

An experiment: High flux dialyzers

Written by Kamal Shah
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In India, most people use low flux dialyzers. Low flux dialyzers do not give good clearances of middle molecules. Over time, these middle molecules build up in the body and start causing all kinds of problems. I have been on dialysis for almost 15 years now. I better be careful about these middle molecules!

This has been bothering me for a while now. Though I knew that more frequent, longer duration dialysis is definitely better for me in many respects, I wasn't so sure if it is was good enough when it came to the clearance of the middle molecules.

I started talking about using high flux dialyzers to different people. Many people expressed a concern about the quality of water available for dialysis in India. They said you needed ultrapure water to safely use high flux dialyzers. They said there was a chance of bacteria getting into the blood from the dialysate if the water being used was not ultrapure. There was a point there. I held off for a while.

Recently however, I have been seriously looking at this again and brought this up with my nephrologist. We agreed that it was worth trying out. The worst that could happen was I could get a small reaction of shivering if bacteria did really get into the blood from the dialysate. This could be treated and we could decide to stop.

There was one more problem. The high flux dialyzer was expensive compared to the regular dialyzer I was using. At the same time, I had decided to try out single use of bloodlines as well. Together this would dent another big hole in my pocket! So, we thought we would alternate the regular F6 (low flux) dialyzer with the Hf80s (high flux) dialyzer. Its been a little more than a week of doing this. Things are going good, touch wood!

The plan is to continue this if I do not have any adverse events. The only problem is there is no way to measure if this is doing any good. But common sense and a whole lot of scientific research shows this must be helping!

... http://www.kamaldshah.com/2012/05/experiment-high-flux-dialyzers.html


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Monday, 21 May 2012 05:08

Dialysis Holiday – quick catch up

Written by Greg Collette
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This is my first opportunity to make a post since we arrived.  A very long flight (26+ hours) from Australia to the UK, dialysis almost every day either at Diaverum Forest Hill, the Oxford Kidney Centre or the Dialysis Unit at Sodersjukhuset in Stockholm city.  All of these working towards one end: having a great time off the machine.  And we certainly have!

Only two days to go and then the reverse journey home: all good things must come to an end I suppose.

All the BigD (and other) details in my next post once I’m back home.

... http://bigdandme.wordpress.com/2012/05/21/dialysis-holiday-quick-catch-up/


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Sunday, 20 May 2012 12:30

Pending Holiday with NxStage

Written by Steve Bone
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Not long before I head off with the NxStage and a ‘stack’ of supplies for my first holiday away with the machine in portable mode.

I had the quick training on assembling the stand and use of the dialysate bags last week, and it’s all very well structured and easy to do, so quite looking forward to trying it out. I have to say that given the simplicity of it all, it encourages me to travel further afield and try the machine in other countries. For travel in the UK, the NHS district have a ‘soft’ case I can use for transporting the machine, but for air travel etc, the machine can go in the aircraft hold in a more robust metalised case.

Set up of the machine for a session whilst away is very easy, and only requires a drain point for the waste – a handy sink will suffice. The drain lines are 20 feet long and you can chain more than one together if you need to reach further to that drain point.

Taking the dialysate with you for the sessions whilst away is a reasonable bulk, I use 30 litres of dialysate per session, so that’s 6 x 5 litre bags (per session). I have a Land Rover with plenty of space, so not an issue for the two holidays planned in the UK, but for foreign travel or for more sessions on a longer holiday, having Kimal deliver the supplies will be a huge bonus – and they can do this for many countries, so there is very little to limit travelling with the machine, and save having to find dialysis facilities locally wherever you go.

I normally dialyse daily for 4 hours per session, but for the two holidays away on this occasion I am going to revert to every other day, and see how I get on – enabling me to spend more time doing things and seeing the sights with my boys!

So, if you like to travel and want to ease the process, looks like the NxStage is an answer, and I note from the number of units now present on Global Dialysis, just one of many options!! I quite fancy Bali, haven’t been back since I’ve been dialysing this time around, and a nice new facility in Nusa Dua!! Next year maybe! (or maybe take the NxStage!)

I’ll report on how the dialysing away goes!

Tags: , , , , ,

... http://mydialysis.co.uk/blog/2012/05/20/pending-holiday-with-nxstage/


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Friday, 18 May 2012 20:42

Heartwarming

Written by Kamal Shah
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At times, I go into bouts of depression; on dialysis, who doesn't?

Recently, I have been grappling with the dreaded bone pain rearing it's head again. In less than two months I embark on a once-in-a-lifetime trip to the US and Canada during which I plan to realize two lifelong dreams. I really don't want to blow it all!

This has caused me to be more worried than usual and yes, become depressed at times. Last night was one such occasion. I was worried whether the pain would allow me a good night's sleep. And as is usually the case, one depressed thought lead to another and another and another.

Just then I got an email from a lady from Dehradun. Her husband has been on dialysis for a while. Most endearing couple. She has been following my blog for some time now and every once in a way I receive an email from her saying hello or checking on some issue. Yesterday's was one small, simple email like most of her emails - she is obviously not very used to computers. Brief, often disjointed thoughts put together with considerable effort using monstrous devices. "Oh! Life was much easier with paper and pen", I can picture her chuckling to her husband!

I broke into a smile on reading the email. "We are very happy to know that you are going on a holiday to the US. How are you going to manage dialysis ( insurance )?" And then an update on her husband's health. The entire depression vanished. I became cheerful again!

The thought that there are people rooting for me in places I have never visited, there are people whom I have never met who are happy about things I do is very reassuring. I have been someone who has always looked for and yearned for affirmation. So, for me to receive this kind of email can be very uplifting.

Thanks so much Mrs. P!




... http://www.kamaldshah.com/2012/05/heartwarming.html


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Holidays
If you're on dialysis and would like to go abroad why not get on to this web site http://www.hditravel.com/en/15.htm and get packing for your holiday i've use this contact twice and they arrange everything for your destination. All you need to do is get your paper work completed by your hospital and send it to the contact i was told by a few people "going to France you'll never get in contact with anyone" hditravel had my holiday sorted within a week. I did try myself to contact a few French hospitals and it was hopeless.


Note: you need to know the dates you're travelling from and to and pick your Dialysis days. HDI will provide you with a form to be completed by you and you hospital.

About HDI

HOLIDAY DIALYSIS INTERNATIONAL


Holiday Dialysis International is an organisation owned by Fresenius Medical Care which offers a free world-wide booking service for dialysis sessions to HD patients.

Holiday Dialysis International restores mobility to dialysis patients by providing them life-saving dialysis treatment in every corner of the globe.

Holiday Dialysis International assures the highest standards of dialysis treatments in all the dialysis units it selects for use by patients.

Holiday Dialysis International takes care of managing the direct contact between the dialysis units and each patient’s doctor for the exchange of medical information.

Holiday Dialysis International assures that the patients’ dialysis treatments are performed in line with their dialysis programmes at home to ensure a smooth continuity of dialysis care for patients whilst on holiday.

Holiday Dialysis International ensures the availability of Fresenius Medical Care machines and single use disposables in all the holiday dialysis units.

Booking with Holiday Dialysis International is the easiest and safest way for patients to ensure their dialysis sessions anywhere they would like to go in the world, either for holidays or for business.

Holiday Dialysis International grants an accurate and prompt assistance to patients both during and after the dialysis booking procedure.

Holiday Dialysis International’s service is possible thanks to the support of the partners and affiliates of the Fresenius Medical Care group.


... http://home-hemodialysis.blogspot.com/2012/05/holidays-if-you-on-dialysis-and-would.html

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