Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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Tuesday, 10 January 2012 11:16

PD first

I have a huge bias for PD and my six years on PD were my best among those with CKD. PD, I feel offers the best quality of life among all dialysis modalities.  The few diet and fluid restrictions, the possibility of unhindered travel and not having to go to the hospital thrice a week all make this modality very appealing.

The nephrologist community has historically been step-motherly towards this therapy. There are multiple reasons for this. Some of these are due to the doctors, some due to the patients. From a patient's perspective, introducing PD first rather than hemodialysis allows patients to settle into a therapy that is less violent, offers more independence and fewer problems. The switch to hemodialysis, from then on, would pose the same challenges as does the switch to PD from hemodialysis currently.

Dr. Kenar Jhaveri of the famous Nephron Power blog interviewed Dr. Arshia Ghaffari from the Keck School of Medicine for eAJKD, the oficial blog of AJKD. Dr. Ghaffari recently concluded a study where PD was presented as an 'urgent start' modality - where PD is the dialysis modality used without any prior preparation for dialysis. The results were great.

This initiative is very welcome. PD as a successful first line of therapy and that too without any prior preparation should at the very least, reduce an excuse from the list of excuses for not recommending this modality.

... http://www.kamaldshah.com/2012/01/pd-first.html

Sunday, 08 January 2012 19:41

Fresenius must explain

In a very concerning post, Dr. Peter Laird says, "The jury is still out on whether FMC bought these companies to expand home dialysis options or instead to stifle competition with their own dialysis oligarchy. The only proof of the former will be the actual release of sorbent technology for clinical testing and rapid penetration of the home dialysis market. Until then, all we can ask is where have they gone for we know that the good, they die young."

'These companies' refers to Renal Solutions and XCorporeal, both of which had portable home hemodialysis machines, one almost ready to market and the other ready for clinical trials. Fresenius Medical Care bought both these companies. We have not heard anything about these machines since the acquisitions.

I will really be happy if Fresenius proves us all wrong and releases home hemodialysis solutions better and more accessible than those available currently. I have been using a Fresenius machine for almost six years now and have received excellent support from the company on everything. So, I really have no personal reason to complain about them.

However, this is a serious concern and it would be great if Fresenius explained where they are with these machines or a suitable portable home hemodialysis solution. I somehow don't believe that home hemodialysis will ever cannibalize in-center dialysis all that much. Very few people will ever switch to home hemo despite all the advantages.

... http://www.kamaldshah.com/2012/01/fresenius-must-explain.html

Dr. Peter Laird, in a great post at his blog, "HemoDoc, From Doctor to Patient", says "Each month, dialysis patients anxiously await the results of blood tests. Each month, the renal staff and physicians pronounce their dialysis adequate by a magical wand without dimensions called the Kt/V. Yet, each month, these same patients die at a rate 2.5 times that of patients undergoing chronic hemodialysis in Japan."

Entirely true Dr. Laird. This is entirely true for the United States and countries that are using at least Kt/V to determine adequacy. The main argument against Kt/V is that it uses urea as the molecule to determine clearance and from this, the measure of adequacy.

While urea is one of the molecules being removed by dialysis, it is by no means, a representative molecule that actually determines that the dialysis is adequate. There are a number of other molecules that dialysis removes and which have a different rate of removal than urea. Urea is a much smaller molecule than many other molecules that are being removed and is therefore, removed much more easily than these other molecules. So, to assume that if you've removed enough urea, you have had adequate dialysis is to be too optimistic since dialysis is actually much more than removing only urea.

There are a number of other measures that have been suggested by a number of different experts. Many of them are much better than Kt/V to determine adequacy. These are all excellent alternatives to Kt/V. Not for India however.

Let me explain.

Most of these indices require a host of blood tests to be done every month or every six weeks. Take Dr. John Agar's Good Dialysis Index. It is one of the best that I have seen among the newer adequacy measures. However, it needs the Serum Iron, Transferrin Saturation, Serum Calcium, Serum Phosphorus, Serum PTH Intact, Albumin and C Reactive Protein to be checked every six weeks.

Yes, I can almost hear all Indian readers of this post laugh out loud!

Many patients resist any blood tests to be done every month. Some will agree, but only after a howl of protest. I don't blame them. Most countries that get these kinds of blood tests done are from countries where the patients do not have to pay for them out of pocket. So, they would hardly have a problem with that. In India, where costs are the biggest problem since most patients pay out of pocket, how can we expect patients to get the battery of tests required to be able to calculate these indices?

Coming back to Kt/V. Yes, it is a flawed measure. But it is a measure nevertheless. In fact what the experts ask us to do (including Dr. John Agar) is to not rely only on the Kt/V. But they would never say do not measure the Kt/V.

When I joined the dialysis industry as a professional and started looking at dialysis from the blunt side of the needle rather than the sharp side I was used to all these years, I found a shockingly great apathy for adequacy. No one did Kt/V! It was mostly some theoretical concept in the text books. Of course, the industry had a reasonable argument to back this. Patients did not want to do tests. Patients did not want to increase their monthly financial burden.

But a start must be made somewhere. We need to move towards adequate dialysis for patients. To be able to do that we must, first of all, know for sure,  what kind of dialysis they are getting. I find that Kt/V is a good start. Gradually we must combine it with other measures to come up with our own index. But Kt/V must be measured. It will at least tell us those patients in whom even the urea is not being adequately removed and I suspect that there must be quite a bunch.

... http://www.kamaldshah.com/2012/01/why-ktv-deception-is-good-start-for.html

Monday, 02 January 2012 20:00

Two nights on, one night off?

That is Bill Peckham's dialysis regimen. What it basically means is you dialyze two nights and then take the next night off. And then you dialyze the next two nights and take the next night off. And so on. This of course applies only to those on nocturnal dialysis.

I started off my nocturnal dialysis by dialyzing six nights a week. Sundays were always off. Those, however, were the days of huge fluid weight gains and there would also be days when I put on 4-5 kgs between two consecutive days - that is 4-5 liters of fluid consumed in less than 16 hours! Sundays would become difficult then since I would have to consciously restrict my fluid intake. And I absolutely loathed that.

So, I decided to do true daily nocturnal dialysis. No Sunday off as well. On Sundays, though, since the technician would not come, I would do everything from start to finish. This got to me quickly and reverted to six nights a week.

Recently, I started getting fed up with dialysis. I decided to take an extra night off. So, I took Thursdays off in addition to Sundays.

Now I find I find it difficult to do more than two nights in a row. The quality of my sleep on dialysis is not great. So, more than two nights on dialysis is a little frustrating. I am thinking I should also switch to Bill's 'two nights on, one night off' regiment. Heck, if it's good enough for Bill, it's good enough for me!

... http://www.kamaldshah.com/2012/01/two-nights-on-one-night-off.html

So there I was happily partying away last night when something terrible happened.

A friend tagged me on his Facebook picture. This wasn't a real picture as in 'real picture' but a collage of motley pictures which did not even have me in them. But my enterprising friend decide he wanted to show off his artwork (done on Photoshop?) to the rest of the world. So, he uploaded the pic to Facebook and tagged every single friend on his Facebook to it.

Chaos followed.

Now it was New Year's eve. So, many enterprising friends of this friend of mine decided they have to appreciate my friend's creative collaging skills. So, many of them started commenting on them. Now, because I, unfortunately, was also tagged in that pic that did not even have me, started receiving an email every time anyone commented on that picture! And I had my phone with me on which I would get every email and I also had the Facebook app with push notifications enabled on it so every time someone commented on that I got a separate notification as well.

By 11:30 p.m., I had received like a gazillion emails and another gazillion notifications. It was New Year's Eve, after all and the festive spirit was at its peak.

I couldn't take it any longer. I ran to my laptop and launched Facebook on the browser and went to the pic and 'unsubscribed' to the pic. I felt relieved.

But it was not to be. The emails and the notifications continued.

This morning I went back to the pic on Facebook and realized that because I was tagged I would receive the comments irrespective of whether I was subscribed or not. Then I had an aha moment.

I had to remove the tag. 'Na rahega tag, na bajenge comments.'

I went and successfully de-tagged myself from that pic. Peace ensued.

Happy new year to you!

... http://www.kamaldshah.com/2012/01/how-facebooks-tagging-ruined-my-new.html

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