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Friday, 04 May 2012 23:08

There's something about grandparents

Written by Kamal Shah
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My grandmother (mother's mother) stays alone in a huge bungalow right next to ours. She has a Tata Sky connection. Left to herself she would have much rather continued her cable connection where the cable operator would come and ask her for the monthly rent and she would hand out the cash. Now, she has to depend on someone to recharge the account and she does not Iike that one bit. Of course, she did not realize this when the connection was set up by Rudy, her grand-son-in-law!

So now she comes home a couple of weeks before the recharge is due with a crisp Rs. 1000 note and asks me to recharge her account. She also brings in her account id just in case I don't have it. I get on to my laptop and log on to the Tata Sky web page and within a couple of minutes I have her account recharged for three months.

She is usually profusely thankful. She compliments me on how fast I did the recharge and how she is out of tune with the times where everything can now be done on a computer!

That however is not the point of this post.

I often feel embarrassed when she thanks me. For something as little as that. I tell her it was nothing. What I leave out is the number of things she and her late husband, my grandfather have done for me.

It was nothing big really. That's the beauty of it all. Nothing big. Just so many small little things that shows the infinite, unconditional and selfless love they had for me that caused them to do these things. As I write this, my eyes turn moist. I miss you Dada!



... http://www.kamaldshah.com/2012/05/there-something-about-grandparents.html


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Well, after months of planning and fitness doubts, we leave tomorrow on our UK and Swedish adventure.

About the China Leg

Originally we were to spend 6 days in Beijing before going to London, but after three weeks in some kind of unhealthy haze, I decided it was too risky this time.  I have a reasonable understanding of Mandarin,including important phrases like:

  • Bushi Wo Zuode – I didn’t do it!
  • Zhikong wo shenma? – What am I accused of?
  • Wo keyi da dianhua gei wode dashiguan ma? – Can I call my embassy?
  • Wo xiang yi bei kafei – I’d like a cup of coffee and most important,
  • Wo xuyao touxi! – I need dialysis!

But not enough to be confident if things go wrong, having been wrong so recently.  So, for the second time, Beijing has eluded me.  But all is not lost.  I am determined to get there, either later this year or this time next year.  Third time lucky.

For those interested, after a long search and some help from my Chinese friend Rebecca, I had arranged dialysis at the Chinese-Japanese Friendship Hospital (中日友好医院), which is located about half an hour north of Tiananmen Square.  The cost is 1,500 Chinese Yuan per session (about US$250), plus 2500 Chinese Yuan (about US$30) registration fee.

For convenience we booked into the Crowne Plaza Park View Wuzhou, which is very close to the hospital.  You can catch a bus there (takes about 15mins), or a cab, they are quite cheap.  A brief warning: when you book (we did so via www.hotels.com who were very good) be careful about the cancellation policy.  They have a range of room types, and each has two prices, one is the nonrefundable price, the other is the refundable price should you need to cancel, which is about US$500 more expensive.  We had a little drama with that policy, but all worked out in the end.

The best way to start the process is to call the dialysis unit and talk through what you need.  Most speak English of a sort.  They then asked you to fax your dates along with a summary of your dialysis details from your unit.  I then got an email from the doctor in charge confirming the booking.  The unit also contacted my unit and asked for two blood tests before proceeding: my HIV and (believe it or not) Syphilis status.  I’m not sure what message that sends.  Still, when the result came back, I was quite pleased to see that it was negative!  As usual, they also require the latest health information about you from your unit, just before you leave.

All together a fiddly process, but if that’s what it takes…  If you would like the phone and fax numbers and email address, contact me at me email address.

The UK and Europe

So we are now travelling direct to London. I have booked into the Diaverum Unit in Forest Hill (one of many sister units to my Diaverum unit in Diamond Valley).  They were very helpful, and I am dialyzing on the same regime as at home (five days per week, three hours per time).

I am also dialyzing in Oxford twice and in Stockholm once.  Both of these are public hospitals, and with our reciprocal Medicare agreement, at no charge, so I even get a small holiday from paying for it (so to speak).  Contact me if you want the details.

Just a hint for those with lots of meds.  For big trips like this (3 weeks in a foreign land) I get my meds sorted into day-by-day bubble packs. I do this for 2 reasons:

  1. Each day is measured out for the entire trip (plus a week or so for emergencies), so you won’t run out unexpectedly
  2. Those pill boxes can be pretty bulky, and they only last a week, so you have to repack them from the myriad of pill bottle and boxes you also have to carry.

So, off into the distance,  But I will have my trust PC with me, and where possible, I will post notes (probably briefly) of my dialysis and general travel experience.  Back soon…

... http://bigdandme.wordpress.com/2012/05/04/dialysis-in-china-almost-and-all-points-north-the-details/


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Tuesday, 01 May 2012 21:37

My experiments with bread

Written by Kamal Shah
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Ever since my parents brought home a bread maker from the US last year, I have been experimenting with different types of breads. Bread makers really make your job easy. All you need to do is put the ingredients of the recipe in the right quantity and in the right order into the bread maker and the rest of the job is taken care of for you.

The important thing as the manual keeps stressing again and again is to use exact quantities of the ingredients specified in the recipe and to put them in the right order. To help with the quantities, my parents also brought home a set of measures that helps me measure out exact quantities - 1 and 3/4 cup, 1 and 1/8 cup for example - all such measures can be done exactly!

There is one problem with the bread maker however. There is a small mixer that is to be fixed at the base. This causes an uneven hole to form at the bottom of the bread. I can live with that however. I guess they cannot avoid that!

I have tried different types of bread - regular white, whole wheat, cinnamon and raisin, honey grain, Italian Herb etc.. Most of them turned out very well. The 100% whole wheat was an exception. It wouldn't rise well enough and wouldn't be fluffy. I tried many changes to the recipe. More water, more yeast, a touch of oil. Though most variations were better than the original recipe, none was frankly, good enough. When I look at the whole wheat breads available in the market and take a closer look at the ingredients, I find that most of them are not 100% whole wheat! They all list wheat flour (maida) as one of the ingredients. Now I know why!

Here are some pictures of the bread that I have made:

image

Italian Herb Bread - this one contains Parmesan Cheese, Parsley and Basil. Tastes really good with all those herbs. You get a mix of the flavors from the main ingredients. The bread usually caves in at the top - I have no clue on how to avoid this! No problem in rising however and it is as soft and fluffy as it should be. 

image

Honey Grain Bread - contains a mix of maida, whole wheat flour, oats and honey. I sometimes use this as the base for other recipes. It is healthier than the regular maida bread. I have used it successfully with Italian Herbs as well. The bread itself is neutral to taste. But the addition of whole wheat and oats makes it an excellent alternative to regular bread.

image

Cinnamon and raisin bread - is a complete refined flour bread with a dash of cinnamon powder and black raisins. This one is slightly sweet due to the raisins - not cloying by any means. This one rose so well that it was a treat to look at and eat as well!



... http://www.kamaldshah.com/2012/05/my-experiments-with-bread.html


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Monday, 30 April 2012 10:52

A small tweak to my dialysis schedule

Written by Kamal Shah
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I dialyze six nights a week, about seven hours each night. I take Sundays off. 

I swim six days a week in the morning. Wednesdays, the pool is closed for maintenance.

How are these related? Well, I usually don't swim the morning after I don't dialyze. So, until now I wouldn't swim on Mondays because I did not dialyze on Sunday nights. 

Why wouldn't I swim the morning after the night of no dialysis? I feel a little heavy in my chest the day after I don't dialyze. It is probably excess fluid. It could also be that I am so used to being almost close to my dry weight that even a little fluid makes me uncomfortable (which is actually a bad sign because I am going to be dialyzing irregularly during my US trip in July - anyway, we'll deal with that later).

So, I don't swim on Mondays because I don't dialyze on Sundays. And Wednesdays the pool is closed. So, that way I end up missing two days of swimming during the week.

So, what I now do (with the great co-operation of the two techs from NephroPlus - thanks guys!) is to dialyze on Sundays and skip dialysis on Tuesdays. That way I coincide my dialysis weekly off with the pool weekly off! 

This has had another unintended benefit. Sundays being a holiday I am generally not that busy plus I usually do a movie and dinner out with my parents. These are all sure recipes for fluid intake disasters! So, if I dialyze on Sundays, I can be sure that all that extra fluid is removed without any delay.

'A stroke of genius', did I hear you say? Thanks!

... http://www.kamaldshah.com/2012/04/small-tweak-to-my-dialysis-schedule.html


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First off, why do we use heparin during dialysis?

During dialysis, as you might be aware, the blood goes out of the body to be filtered through the artificial kidney. Now let us move away from dialysis for a bit and think about what happens to your blood when you get cut and blood oozes out? It clots soon enough, right?

This is an inherent characteristic of blood. It clots when it is out of the body! Another example of the amazing way our body works. The body has figured out a way in which it causes the blood to clot when outside the body but not when it is within!

Coming back to dialysis, when the blood is drawn out of the body, the body does not realize the reason the blood is going out. So, it would tend to begin the clotting mechanism and cause the blood to clot which would be disastrous! So, what we do is to continuously pump a small amount of a substance that prevents this clotting from happening. This class of substances are also called anti-coagulants.

Heparin is one such anti-coagulant.

So, what happens in a dialysis machine is that a small quantity of heparin is taken in a syringe, diluted many times and fixed to a pump that pumps the resultant solution very slowly into the blood that is coming out of the body to prevent this clotting from happening.

Now the quantity of heparin that is used must be the bare minimum that is required to prevent clotting. The reason is that heparin can have some very deleterious consequences. When you use too much heparin, the time taken for the blood to stop oozing from the arterial and venous sites after terminating the dialysis session may be too long. Too much heparin can also lead to a condition called Thrombocytopenia which means a reduction in the amount of platelets in the body. Long term use can lead to thinning of the skin and even osteoporosis.

So, folks like me who intend to live for many more years need to be wary of the long term side-effects of heparin and make sure techs who do not know about the long term effects do not use too much heparin! Chances are, however, that they will not use too much. Heparin is frightfully expensive, you see!

... http://www.kamaldshah.com/2012/04/with-heparin-on-dialysis-you-need-to.html


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Sunday, 22 April 2012 06:36

Pump up your dialysis speed!

Written by Kamal Shah
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One of the most important factors in the quality of your dialysis is the dialysis pump speed. This is the speed at which the dialysis machine draws blood from your arterial line, puts it through the dialyzer or the artificial kidney and then returns it to your body through the venous line.

The higher the blood pump speed, the better your blood gets cleaned by the artificial kidney. This is mainly because with higher pump speeds, more blood gets drawn and put through the artificial kidney which allows the artificial kidney to remove more and more toxins from the blood.

This is a picture of the blood pump from a Fresenius 4008S machine and the number '195' in the picture is the pump speed.

image


So, as someone on dialysis, it is in our interest to have the highest blood pump speed that our body and vascular access can tolerate and is required. Note that this is true only for people on conventional in-center dialysis who come twice or thrice a week. For those on daily dialysis, the pump speed can be lower to give a more gentle dialysis.

Many people complain that they do not feel 'good enough' on dialysis. This could be because they are not getting enough clearance or not enough toxins are being removed by dialysis. Ideally of course, the frequency of dialysis or the duration of the session must be increased. But if that is not possible, the next best alternative is to increase the blood pump speed. This will result in increased clearance and the person feels better.

Technicians and nurses sometimes do not risk high blood pump speeds because it can lead to some complications. However, they should gun for the highest pump speeds that the patient can tolerate. The pump speed must be gradually increased and if the patient does not complain of any problems and good flows are obtained (no air bubbles appear in the arterial line), then the pump speed is all right.

A word of caution though: every change in pump speed must be signed off by your nephrologist as every individual is different and may have different conditions (especially cardiac related) which may necessitate a different line of action.

But this is something definitely worth considering and talking about with your nephrologist and your technician or nurse.

... http://www.kamaldshah.com/2012/04/pump-up-your-dialysis-speed.html


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Back in May 2009, after yet another funeral, I wrote There are only three Ways Out, about the three choices we have with dialysis.  Around the same time, Robert Longstaff, then a newly nominated BigD club member in Sydney, faced the same decision.  He looked at the alternative squarely in the eye and after much reflection decided to keep going.

Fortunately for us, Robert put his thoughts during that time to paper, and has kindly consented to share them with us and the BigD community at large.

TO DIALYSE OR NOT

This piece is written by one who has faced the above question, with the hope that others in the same situation might be better informed of the questions, rather than the answers, to be considered in making an informed decision.

Whilst medical professionals will answer any question you have to the best of their ability,  it is the patient who ultimately takes the decision after informing themselves on the procedure and life with it and consultation with family.

The phrase “To be not to be: that is the question” [Hamlet William Shakespeare] came immediately to mind when my nephrologist first suggested that I needed to consider becoming a dialysis patient, after I had decided that any kidneys available for transplant would be better employed by a young person. [ I am over 80 Years]

My immediate reaction was that I would be given a unique opportunity to decide whether in the medium-term I wish to continue living or end it all.  Few are given this unique opportunity of determining time and manner of one’s dying.

I must confess that my first reaction was to decline the opportunity for a number of reasons.  I had led a full and a very satisfactory life and in fact had achieved most of my objectives as well as experiencing a whole range of interesting activities including:

  • Considerable world travel in fascinating countries
  • Leadership positions in the corporate world and not–for-profit institutions as well in the Royal Australian Navy
  • All my five children were launched and living very satisfactory lives and making contributions to society
  • My spiritual journey had taken me to a point where I have no fear of death.

I had a moral doubt as to whether someone of my age was entitled to consume a large sum of money out of the limited resources available in the health budget.

However before taking that decision, I thought it would be wise to visit a clinic run at the Royal North Shore Hospital that covered all aspects of life as a dialysis patient.

I came away with mixed feelings but more importantly I realised that my considerations to date had been centred on myself rather than looking at my family views.

Needless to say, I gave much thought as how to manage the disruption to my life that treatment would bring.  Retirement brought the freedom to be ultimately flexible and the ability to plan travel, even though, in practise, one did not often use these opportunities.  It was a perceived loss of freedom.

I rationalised that in the past I had dedicated at least 60 hours per week to maintain my financial health and that surely 15 hours per week on my health was not such a huge commitment.

Again, I was assured by my nephrologist and my dialysis unit that some flexibility in scheduling was possible.  I have changed days and sometimes skipped them but the latter only because of my general good health and excellent blood chemistry achieved by dietary control.

We enjoyed a week in North Queensland being dialysed at a local hospital.  Other patients have travelled overseas or cruised with suitable arrangements in place.

I also came to the view that I could do during dialysis what I would probably have done at home: read [a Kindle is a great asset for this] listen to music and snooze.  In other words it was a time place substitution rather than a complete change.

In fact I am reading and listening more than I would at home where my conscience would have driven me to do other jobs about the house.

Most importantly, I had totally overlooked the effect of my passing would have on my family and particularly on my wife who is many years younger than I.

In discussions with the family it was agreed that I would undertake a trial dialysis period of some six months and if, after that, I wished to discontinue the program, the family would accept my decision without argument. [I am now, 2012, approaching the third anniversary of starting dialysis.]

In closing I hope that these notes might help future dialysis patients when making the difficult decision to dialyse or continue dialysis or not, although every individual has different circumstances and my experience is not a blue print for others. 

Robert Longstaff
Sydney 

Thanks for putting up this post Robert.  It not only provides some insight into a question we all face, but helps us move past the emotion that so clouds our thinking when dialysis first changes from a word to a way of life.

... http://bigdandme.wordpress.com/2012/04/20/guest-post-to-be-or-not-to-be-the-dialysis-decision/


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There is some very exciting and unexpected news for us dialysis patients! Dr. Victor Gura's Wearable Artificial Kidney (WAK) is soon going to be undergoing clinical trials. Under the United States FDA's new Innovation Pathway Program, this device among three devices in all have been selected for accelerated evaluation to bring them to the market.

To be very honest, I did not expect this to happen for a few years. But to mine and everyone else's surprise, this program was recently announced and the WAK was one among the devices chosen! More details on how the clinical trials are going to be held are given in Dr. Peter Laird's blog here. I quickly did the math on the slide on Dr. Laird's blog and found that in less than a year the clinical trials are going to be completed. That is of course, assuming that the different stages will happen immediately one after another. That may not be the case. Two years maybe, then? Still not bad!

Here is a picture of the WAK:

image

When I put the WAK on the Cover Page of the first edition of the Quarterly Newsletter of the Hyderabad Kidney Foundation, I was accused by many of giving false hope to dialysis patients since the device was believed to be decades away from use by people like you and me. So, now you see? The hope was not false! But seriously, at that point even I believed it was decades away myself and said as much in my write up in the newsletter.

Who knew that the FDA would bring up such a scheme and endeavor to bring these life changing devices to the people much sooner?

How soon would the device be now available for people like you and me? Well, I would think about two years in the US and ten years in India. Considering that the NxStage System One is still not available in India despite being available in the US for years now, I am still pessimistic about the availability in India. However, on the positive side, the device is small enough to be picked up from a shop! So, like the iPad which my brother picked up for me on a trip to the US, this device too might just be picked up on a similar trip. Prasan, are you listening? :-)

... http://www.kamaldshah.com/2012/04/hope-on-horizon-for-dialysis-patients.html


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Tuesday, 10 April 2012 22:00

Dialysis pricing conundrum

Written by Kamal Shah
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Should dialysis prices be high or low? A simple question like this can confound nuts like me!

As a patient, I feel pricing should be as low as possible. It is, as it is, an expensive treatment. How can ordinary people afford the treatment if the prices are too high?

However, if prices are too low, can quality really be maintained? Can people who value quality and are interested in providing quality remain in business if the prices fall too low? Yes, this may seem like a lame argument from someone who earns his living from dialysis. But think about it without being biased. It is true.

There are dialysis providers at both ends of the spectrum and many in between. The problem comes when people start expecting quality from the low priced providers and low prices from the quality providers. The unfortunate truth is both quality and low price are simply not possible together.

We must remember a simple truth. Businesses are here to make money. Whether it is the restaurant business, the movies business or the healthcare business. Everyone is there in it for the money. Despite tall pretentions of doing good, the primary motive is money. Satisfying taste buds might be a by-product. Entertaining people might be a by-product. Providing quality healthcare might be a by-product. The primary motive is to make money. Neither the providers nor the customers should ever forget that.

When it comes to charity organizations, we must remember the primary motive is not quality. The primary motive is to benefit as many people as possible. The primary intention is to reach people who need the treatment. So, you cannot expect any frills. You should be happy to get the basic dialysis treatment. Which is also all right because at least people continue to get dialysis. People, who otherwise might have died from lack of dialysis are alive because of this.

When we accept these two aspects, the rest follows easily.


... http://www.kamaldshah.com/2012/04/dialysis-pricing-conundrum.html

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