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Saturday, 09 April 2011 23:34

Dialysis: what to expect

Written by Greg Collette
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I often get asked for advice from people who are about to start the BigD.  I mostly say that dialysis is no big deal.  It’s a very effective treatment that involves a change in lifestyle.  But saying this is not really enough, mainly because most people have their own expectations about dialysis that are often related to how quickly their kidneys failed.  So I thought it may be useful to look at some of those expectations and see how they hold up.

For some, the need for dialysis comes as no surprise; their kidney have been slowly failing and their doctor has prepared them for months or even years.  As a result, these people often develop a real dread of dialysis.  For those whose kidney failure is quick and unexpected, the shock of needing dialysis on top of the trauma of kidney failure does not come with anything like the same anxieties.

Friends and family don’t usually know much about dialysis, except that it’s a bummer, involving needles, machines and lots of time out of your life.  All of these things are true; I don’t know many people who would dialyse if they didn’t have to.  But it’s also true that dialysis gives you the rest of your life back, to live the way you want to.

Kidney failure is the real bummer.

If they fail fast and unexpectedly, you’ll switch from a healthy individual to a very sick, weak, grey, panting, aching, puffy and dopey one within a few days.  Forget walking down to the shops, visiting friends or having a nice drink after work – forget work too.  The contrast from healthy to unhealthy is so stark, that in a very short time most people welcome dialysis.   And they are pretty happy with the result.  After a week or so those lousy symptoms and feelings go away and their old life though modified, seems possible again.  (Don’t get me wrong, I’m not saying there is no resentment, anger and sometimes despair, I’m saying that people in this position are usually more open to dialysis.)

It can be more difficult for people with long-term kidney disease (like me).  I had a dramatic loss of function to one kidney in 1972, and at that stage found out the other kidney was not working.  Luckily the failed kidney was repaired and the remaining function was enough to get me by for the short to medium term.  But in the early 1990s I became increasingly unwell, and my doctor began preparing me mentally and physically for the BigD.  Physically, this was a good move.  My fistula was in place and a good size when I started dialysis in 1995.  Mentally, not so good:  I began to think of dialysis as a big black BAD.  It was a dark zone which represented failure, loss of freedom, maybe pain and general misery.  To me, the dread of starting dialysis was worse than the kidney failure.

So, of course I held off for as long as I could (much longer than I should have) and so was quite sick when I started.  And I was sure that it would be a terrible experience.  The needles were a shock, but there was local anaesthetic, so not much pain. The rest of it, being uncertain about what to do and what would be done to me, sitting quietly for four hours, turned out to be not that bad: a cup of tea, TV, a small snack, several blood pressure measurements and even a chat with others and the run was over.  The needles came out, dressings on and I went home.

After a week or so I started to feel pretty well, so I became ambivalent: I liked what dialysis did for me but I hated going there and losing all that time.   That feeling didn’t go away for years (I’m a slow learner).  But eventually it became clear: my BigD time is an investment in the quality of the rest of my day, my week, and my life.

There are few uncertainties now.  I put in my own needles, painless using the buttonhole technique; I have things to do during each run and the time goes pretty quick.  Dialysing five times per week means I can eat what I like (mostly) and I’m in good health, so I live an active life between runs.

So, what should you expect from dialysis?  You should expect a few seconds of needles that become less and less worrisome over time.  You should expect to invest around 15 hours of your time per week, so start thinking of things to do while you are there.  But mostly, you should expect to feel pretty well within a week or so of your first run.  It’s not something to dread; it’s not easy at first, but it gets easier to handle as time goes on, and it gives much more than it takes.

... http://bigdandme.wordpress.com/2011/04/10/dialysis-what-to-expect/

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Friday, 08 April 2011 20:30

'Email is not working'

Written by Kamal Shah
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My mother has an ICICI Bank credit card. She was asked by the customer care to send them an email and action, they said, would be taken in 24 hours. So, my mother wanted to send an email. She's had a Rediffmail account for some time now which she uses sporadically. If you send her an email, you need to call her and tell her to check her email.

So, she asked me what the email address for ICICI Bank's customer care was. A google search threw up the answer and I told her. A little while back she came back and said it was asking her to check the address she was using. I re-checked the email address she was using. It seemed to be correct. I asked her whether she had logged into her Rediffmail account. She asked why she needed to do that? I was a little horrified.

I asked her where she was typing the email address I gave her? She said in the line where she types addresses. I quickly figured out that she was typing the email address in the browser URL field!

I then explained to her that she needed to log in to her Rediffmail account to send email!

... http://www.kamaldshah.com/2011/04/email-is-not-working.html

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Wednesday, 06 April 2011 16:51

The NxStage – NOT!

Written by Steve Bone
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Well I did get to see the NxStage, got very excited about the prospect of getting  home again after 4 years, with the implied hint that this was imminent. On chatting with the guy from Kimal he had a training slot next week, so I was geared and ready to go. BUT…. I did not bank on the breakneck speed with which the NHS moves, only to be told that I can’t train next week, as there are too many operational issues on the local unit in Peterborough to cope. (not part of the plan, clearly, and also not part of the routine). So, I now have to wait nearly 3 months – YES, nearly 3 months for the planets to align and the wind to change so that I can have my training.

I suspect they forget I only need to to be trained on the machine, I don’t need hand holding for clinical care. After all, I was taught to self care 20 years ago, and dialysed alone and independently within 4 weeks of starting hemo. With everything else I am trying to get organised in my life (yes, I do have a life) getting home with the machine within 2 to 3 weeks would have been an absolute godsend, and solved huge problems. But hey….. the cogs will turn and eventually the monolith will spew out a training plan. Oh, and the best part, was, I was going to be expected to be signed off using the standard home hemo plan, which will be completely useless for the NxStage. Startling!!

So, from my tone, whilst I am still excited about the future prospect of the NxStage and home hemo again, yes I am bitter and very annoyed, I have to sit and twiddle my thumbs for best part of three months. I love the human skills deployed here…….

(This is not aimed at the messenger who had to deliver the bad news)

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... http://mydialysis.co.uk/blog/2011/04/06/the-nxstage-not/

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Tuesday, 05 April 2011 23:03

Morning lark or night owl?

Written by Kamal Shah
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Do you like to wake early in the morning or stay up late at night when it comes to study or work?

I used to debate which is better for me right from school days when an exam was coming up. I used to mostly stay up late rather than wake early (unless I had to do both!). The main reason for this was staying up at night was a safer option. Let's say you had some stuff to complete. You estimated it would take two hours to complete. So, you decided to do it in the morning and woke at 5 a.m. because you had to start getting ready at 7 a.m. Now if it got extended for whatever reason, panic would set in and possibly you may not finish what you set out to do at all! On the other hand, if you stayed up late, you had the entire night ahead even if things took longer than you thought they would.

The morning larks however would argue that you would generally finish whatever would otherwise take 2 hours, in an hour. Simply because your mind is totally fresh, completely rested and very efficient. This argument has merits. I have switched to a consultant model with the software company I worked with. So, I work from home, work according to my convenience and bill for the hours put in and the work done. I find that I am at my best in the morning. I am usually done with my dialysis around 5 a.m. and then have about an hour to two hours to finish off some work (unless I feel like and am able to go back to sleep). I am able to complete really complicated stuff very quickly.

The Hindu scriptures extol the virtues of the morning too. Most scholars arise early in the morning and practice their shlokas at that time. I guess, for work that involves the mind, no time is as good as the morning. Especially when there is no deadline involved.

... http://www.kamaldshah.com/2011/04/morning-lark-or-night-owl.html

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Sunday, 03 April 2011 08:49

Testing prior to NxStage training

Written by Steve Bone
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All being well, in this coming week I am going to do daily dialysis for 3 hours each day for the 1 week on a Fresenius 4008, taken pre and post bloods at each session to see the effects of dialysing on a ‘traditional’ dialysis machine in this mode, then next week when I start my training and dialysing on the NxStage I will do the same tests. At the end of the second week we will have two sets of data for direct comparison between the two ‘methods’ of dialysis. There is a general desire to see the results by the docs as well as myself to see what the outcome is.

As I understand it, this test has not been performed in the UK so far so hopefully it will prove to be really useful.

Another post while I am testing on the outcomes.

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... http://mydialysis.co.uk/blog/2011/04/03/testing-prior-to-nxstage-training/

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Friday, 01 April 2011 20:14

Ultrasound scans for people on dialysis

Written by Kamal Shah
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I was in the East Marredpally unit of NephroPlus a couple of days back. A patient's son wanted to speak to me. He said his father was advised to undergo a KUB Ultrasound Scan and they went to Apollo Hospital in Secunderabad. There, the assisting nurse asked his father, the patient, to drink a lot of water and make sure his bladder was full. Only then could they do the scan.

The family was in a dilemma. They had, all along, been advised to restrict his fluids to a liter per day. Now, here was a nurse asking him to drink a lot more. They explained this to the nurse. The nurse wouldn't listen. She insisted that the scan couldn't be done without a full bladder. The family relented. The patient was made to drink about three liters of water in a span of about an hour. The scan was done.

By next morning, the patient was overloaded with fluid. His feet were swollen and he could barely walk.

This is so outrageous!

First, the bladder wouldn't have been full even if the patient would have had 100 liters of water. Simply because his kidneys weren't functioning. Second, in all patients with kidney failure ultrasound scans are routinely done with empty bladders. There is simply no choice. This shows the complete ignorance and apathy of the staff at the hospital. Again, it is not only this hospital. I have myself been asked several times to drink a lot of water when I went in for an ultrasound scan. I simply tell them my bladder is already full. The radiologist usually understands. It is the staff outside that does not.

This is a very basic facet of kidney disease that should be taught to anyone who is likely to deal with these kinds of cases. Ultrasound scanning staff to start with. Nephrologists of each hospital should probably take the lead on this and instruct the departments to make this a part of the rules/handbook/training or whatever such mechanism might be available.

If the patient is on dialysis, there is NO NEED FOR A FULL BLADDER. DO NOT DRINK ANY WATER AT ALL. If the team there insists, refuse to do the scan and ask them to speak to the nephrologist.

... http://www.kamaldshah.com/2011/04/ultrasound-scans-for-people-on-dialysis.html

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Thursday, 31 March 2011 11:50

The NxStage arrives

Written by Steve Bone
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Went into the dialysis unit early today to see the NxStage machine. It was set up in bag, or portable mode. First impressions, neat, simple, and, with some forethought, eminently portable.
The machine came with a Kimal guy who knew his stuff and gave me an excellent and detailed run through.
It’s certainly very easy to use, foolproof in operation, and as the machine takes no fluids internally, does not need cleaning or disinfecting, just a wipe down with a damp cloth. The blood and dialyse circuits are complete on setting up the cartridge based line set, and the circuit priming is very thorough.

We worked through the dosage required to give me a good dialysis, and as I will be dialysing while I am working, the time required is unimportant. My plan is to dialyse 6 days a week for at least 3 hours, but more likely 3.5 to get a better dialysis result overall.

I have asked that I dialyse daily on the Fresenius 4008 for at least 4 days with daily pre and post bloods to establish the effectiveness of the unit based machine, and then do daily pre and post bloods on the NxStage when training so we get a full comparison, and also understand dosage etc in advance of going home. The guys in the Peterborough unit agree and have suggested 6 days daily on the Fresenius, for 3 hours each day! All cool!

Training is planned to be 8 dialysis days and then head home straight after, subject to my competence of course!

Plumbing in is a doodle, washing machine tap for the water inbound, and a washing machine waste for the waste, or effluent as they like to call it! Two small holes in the wall and we are good to go!

Another update once I start my training!

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... http://mydialysis.co.uk/blog/2011/03/31/the-nxstage-arrives/

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I have seen pretty much all modalities of renal replacement in my almost 14 years of experience with kidney disease. Here is the list of modalities in order of my preference:

1. Kidney Transplant: Top there is the indisputable king, a renal transplant. Despite all the risks, the costs, the possible complications, a kidney transplant continues to offer the best outcomes. For me, the most important benefits of a transplant are the freedom from dialysis and the freedom from fluid restrictions. Despite all what people say about daily nocturnal offering outcomes equivalent to cadaveric transplants, I still find dialysis and its attendant problems, both physical and mental, too overwhelming. I would take a transplant any day.

I would go so far to say that once you are diagnosed with kidney failure and are going to need some form of replacement 'soon', do all you can to get a transplant without having to get on to dialysis at all. Try not to know fluid restrictions at all. This is possible and is happening quite often these days. All it needs is swift, prompt, proactive action.

2. CCPD:Second would be Peritoneal Dialysis connected to a cycler at night. This would free up your days and give you the benefits of minimal fluid and diet restrictions. With portable cyclers already available, travel would also not be an issue.

3. CAPD:Third would be manual Peritoneal Dialysis. Three to four exchanges every day. This offers the advantages of minimal diet and fluid restrictions. The only hassle being the 30-35 minutes three to four times a day that you need to spend on the exchanges. Travel is also possible because most providers nowadays have the facility of supplying bags wherever you go. Ideally the patient should self-administer the exchanges to realize the true flexibility and independence of PD.

4. Daily nocturnal home hemodialysis: The best hemodialysis modality. 7 to 8 hours, 6 to 7 nights a week. The problem is you still need to suffer the needles. There is also a certain element of risk. Blood leaks can happen. Hypotension and cramps can happen. Despite all this, the benefits far outweigh the risks. The full advantage of the modality can be realized only if you self-dialyze. It is difficult but can be achieved with proper training available in some countries (not in mine).

5. Short daily home hemodialysis: Two to three hours everyday at home. The problem with this is the fluid removal rates can still be high. Fluid restrictions will still apply. Risks are reduced because you are most likely awake.

6. In center nocturnal hemodialysis:4 to 6 times a week, 7 to 8 hours in center. Offers the benefits of longer duration dialysis but you need to go in-center. Cross infections, inflexibilities.

7. Twice/Thrice a week home hemodialysis: Regular hemodialysis except that its at home. The problems of the modality remain. However at least you are saved from the danger of cross infections with viruses such as Hepatitis B, C and HIV.

8. Regular, in-center hemodialysis: Regular hemodialysis in a center. My least favored option. The default for most people. The only option most people are told about.

... http://www.kamaldshah.com/2011/03/my-list-of-preferences-for-renal.html

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Thursday, 24 March 2011 23:14

Coding conventions versus readability

Written by Kamal Shah
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There is a coding convention in most languages that says do not use literals in the code. Literals are constants line 0, 1, "India" etc. Things which have a constant value. The advice is to declare a static constant and use that in your code. The reasoning is that if you want to change the value later, you simply need to change it at one place, at the top. Makes a lot of sense.

However, there is one aspect that the conventions don't mention which is very important in the use of this convention. About the name of the static constants that are being used. Let's see an example. Let's say we want to use a constant for the number of hours in a day, a good name for this constant would be NUM_HOURS_DAY. I have seen some people name this constant TWENTY_FOUR! Now the sole purpose of going about this whole exercise is so that you can change the value of this constant easily later. If you name it TWENTY_FOUR, sure, you can change the value to 25 but suddenly, the code becomes very confusing.

This happens more for things like 0 and 1. I have seen people name a constant that should have been declared IS_VALID = 1 instead declare it as in ONE = 1. The whole point is lost.

Now, that brings me to how far we should go in using these conventions.

I have been working on pure Java/JDBC code recently. The idea was fast performance and minimal fuss. So, we went with this. One problem with this approach is you have to handwrite the SQL. So you are actually preparing strings that hold SQL commands and then preparing statements and then running them. Well, since we are pretty much not going to change the database being used in this application from MySQL to anything else until December 12, 2012 and after that anyway, it won't matter, it should be ok.

So, the question now arises, as to whether these SQL commands should be scattered about in the code or should we declare them all as static constants and use the constants? For example,

private static String QUERY_FETCH_ALL_BOOKS = "select * from book";

Yes, the purist in you would say. And I will agree with you, if only for a bit.

Now, let's say the query becomes a tad more complicated:

"select users.user_id, users.email, count(*), max(classified_ads.posted)
from users, classified_ads
where users.user_id = classified_ads.user_id and users.user_type = ? and users.status = ?
group by users.user_id, users.email
order by upper(users.email);"

Now by keeping this query as a constant and using only the constant in the code, you lose out on the specifics of the query. You have no clue on what the parameters are and you do not know what columns it returns. By intelligent naming, may be you can resolve this to some extent. But what advantages does this offer? It only makes things more complicated. The readability of the code is lost. The concept behind this convention is excellent. But it should be used where it makes sense.

I believe that conventions should be there to facilitate better coding and maintenance. They should not be rules written in stone to be used whatever happens. We should use our heads and decide where they should be used and where they should not.

... http://www.kamaldshah.com/2011/03/coding-conventions-versus-readability.html

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