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, 22 May 2012 20:27

An experiment: High flux dialyzers

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

Friday, 18 May 2012 20:42

Heartwarming

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

Thursday, 17 May 2012 21:24

Bone pain back

I have been having quite bad bone pain mainly in the back and my shoulders. It reminds me of the pretty severe pain I had for months a couple of years back. It is affecting my sleep as well. My PTH has become high which leads me to think that that could be the reason. But as with anything else, I am unsure.

I have been started on Cinacalcet 30 mg once daily. My Calcium is 9.5 mg/dl which is a little below the upper end of normal. So it is not the lack of Calcium that is causing the bone pain like last time.

While last time, the pain was mainly in the feet and started increasing in the back and shoulders before we managed to determine the cause and treat it, this time round it has started in the back and shoulders.

I am a little worried about the pain as my US trip is in under two months from now. I really need the pain to go by that time. Fingers crossed!

... http://www.kamaldshah.com/2012/05/bone-pain-back.html

Sunday, 13 May 2012 01:46

Planning, thinking, re-planning...

As you know, I am making this trip to the US and Canada this July. And one problem is the dialysis. I need to get good enough dialysis during my trip to be able to avoid having severe diet and fluid restrictions and also to feel good. Less dialysis means more diet and fluid restrictions and less energy and less feeling 'normal'.

At the same time I need to avoid too many day-time regular four hour sessions. Otherwise I will feel like I am spending more time on dialysis than on having fun! If it is night time sessions, bring them on! I can take any number of them.

So, its a fine balance.

The night time dialysis will only be possible at centers since I will obviously not have a dialysis machine where I will be staying. Very few centers offer nocturnal dialysis at the clinic. Those who do, offer only limited days. For example, Davita centers that I have talked to only offer either Monday, Wednesday, Friday slots or Tuesday, Thursday, Saturday slots for in-center nocturnal dialysis.

A couple of weeks back, I had my whole schedule ready and I sent it to all my friends and relatives in the places I would be visiting. A few days back, however, the seeds of self-doubt were sown by a dear friend, Murali (himself on dialysis) when he cautioned in a comment to a post on this blog that I must be prepared for 'complete fluid restriction'. Gosh! that sounded horrible! Especially since I was not used to any fluid restriction. Since then I have reworked my trip plan, shortened it, changed the dates, changed the places, removed some destinations, dropped the plan altogether, resurrected the plan, everything possible!

I now have a plan that seems feasible. I have had to change some stuff to accommodate more nocturnal dialysis and less four hour sessions. I am still doing the same places but in a different order to enable me to get better dialysis and hence - more fun!

... http://www.kamaldshah.com/2012/05/planning-thinking-re-planning.html

I've been starting a new pair of buttonhole sites for the last few days. Last night was the third time in the series of about five or six that it takes of cannulating with sharp needles to form well established tunnels for the blunt needles to go in.

Everything went well. Starting, the treatment itself, closing. Usually with blunt needles it takes barely ten minutes for the sites to stop bleeding. With sharps it often takes longer - about 30-40 minutes. The arterial site however stopped bleeding in ten minutes. I opened the venous fellow a wee bit knowing that this chap behaves rather badly compared to his arterial cousin. Sure enough, the blood was gushing out. I quickly closed the gauze and fastened the tourniquet.

Twenty minutes on, I opened the gauze a little again. Still gushing. Thirty minutes, no sign of stopping! Forty minutes. One hour. Still no sign of stopping. The gush was powerful as well. I might have to drop swimming today, drat!

After one and half hour, the gush was still powerful. By now I was perplexed. What the hell was happening? Why isn't the blood stopping? I wondered if too much heparin might have been used. That did not explain it because the arterial site had stopped long back!

Two and half hours had passed. I opened to check. Still bleeding but thankfully, the force was less. At least we're in the right direction!

It took about three hours fifteen minutes for the blood to stop. I finally removed the tourniquet and the gauze piece and watched closely for about five minutes before deciding that yes, the blood had stopped!

Never in the past six years of home hemo has the blood taken so long to stop - type of needle notwithstanding.

Now I need to decide whether to continue to use the site that troubled me this morning or disband it and start afresh with another site.


... http://www.kamaldshah.com/2012/05/and-then-every-once-in-way-this-kind-of.html

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