This morning, the third NephroPlus center was officially inaugurated. This is a very significant milestone in many ways.

For one, there was no dialysis facility in Mahabubnagar. Dialysis patients currently travel about 100 kilometers each way to Hyderabad to get dialysis two to three times a week. It takes a good two hours to travel one way. So four hours for traveling and at least five hours for the four hour dialysis session itself and about half an hour before and after. The whole day gone. For the patient and an attender. Twice or thrice a week. People we talked to said that they were spending more on travel than on the dialysis session itself.

No more of that!

People can literally hop, skip and jump into the swanky dialysis center that has been built inside Mahabubnagar's S. V. S. Medical College and Hospital. And you're not going to believe the last part - they can get dialysis for free since the unit is going to be shortly empaneled under the Andhra Pradesh Government's revolutionary Aarogyasri scheme!



This inauguration is significant in some other ways as well. This is NephroPlus' first dialysis center outside Hyderabad and its first inside a hospital. The earlier two units were inside Hyderabad city and were standalone centers. This will bring on a lot more challenges. We are, of course, all looking forward to this new experience!

... http://www.kamaldshah.com/2011/07/nephroplus-brings-dialysis-to.html

When I first started going over posts in forums meant for people on dialysis (most people were from the US), I would find so many mentions of Phosphorus. People would crib about having to take binders. They would worry about the Phosphorus content of the different foods they would take.

Surprisingly, I never heard as much a fuss being made about Phosphorus among Indian doctors, dietitians and patients. Here Potassium was the popular word! Be careful about your Potassium. Don't eat fruits. Phosphorus was mentioned only in passing.

I often wondered about the difference in attitude in these two populations.

Could it be chiefly due to the difference in diet?

Indians, probably, on an average eat much less meat than Americans. Indians, probably, also consume much less dairy produce (milk, cheese, butter etc.) than Americans. These two are huge sources of Phosphorus. Another source of Phosphorus is colas and other aerated drinks. Preserved food also has much higher Phosphorus than fresh food because many of the preservatives have Phosphorus. Americans, again, consume more of preserved food and aerated drinks than Indians.

A senior nephrologist in Hyderabad once said that the problem with the diet in the average Indian dialysis patient is one of too little, not one of too much! Some dialysis patients I see are actually malnourished. They barely eat anything. In most of these people, Phosphorus is usually on the lower side of normal. At one point the nephrologist just tells their families not to restrict anything!

Potassium is a more of a problem even in the healthier patients. Could it be due to the propensity of Indian patients to eat more of vegetables and fruits? Most likely. There not being any Potassium binders (not here, not in the US) adds to this problem and the perception of it being a problem.

When I was on thrice a week dialysis too, Potassium was my big problem. I didn't even think about Phosphorus! These days, of course, I am on Phosphorus supplements because my Phosphorus is too low!

... http://www.kamaldshah.com/2011/07/why-potassium-and-not-phosphorus-is.html

Potassium is a huge problem for dialysis patients! Almost anything that tastes good has Potassium! Mangoes, bananas, coconut, chikoos!

And all dialysis patients know that they have to avoid anything containing high Potassium. "You may die if your potassium goes too high!" "Your heart will stop working if your Potassium goes high!" "Avoid high Potassium foods like the plague!"


There are sites on the internet that have a lot of information on the content of Potassium in many foods. However, most are based on the US foods. Many of those foods are not even available in India. Nectarines for example! And then there are many Indian foods which are not listed in those sites. Also, many foods are grown differently in the US than in India and the potassium content is different in both the versions! Oranges for example.

All these issues have now been resolved!

Just visit this link on the Dialysis in India website (Disclaimer: that site is also maintained by me!). It has the Potassium, Sodium (and many other minerals) content of a huge list of Indian foods!

So, now you can refer to this list before restricting your food! Enjoy!

... http://www.kamaldshah.com/2011/07/great-resource-for-dialysis-patients.html

So, I have this rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). There are probably a handful of adults in the world that have it. In this disease there is uncontrolled activation of the alternate complement pathway (alternate mechanism of protecting the body against foreign invasions, so to speak).

It has been proved that I have a genetic defect in me where two exons of the CFH gene are replaced by two exons from another gene called the CFHR1. This is called the CFH/CFHR1 hybrid gene. This genetic defect makes me vulnerable to Hemolytic Uremic Syndrome (HUS). The vaccinations that I took in July 1997 triggered this disease.

Until recently, Plasmapheresis was the first line of therapy for HUS. What Plasmapheresis basically does in HUS is it removes the 'bad' Factor H and replaces it with 'good' Factor H. This may not be effective always. This was done when I presented initially with this disease. However, more of Plasma Infusion was performed and little Plasmapheresis was done.

When I got a transplant in November 1998 and HUS recurred, Plasmapheresis was NOT done. This, I feel, in hindsight, was a grave mistake. Not that I blame anyone for this but this would have given us a shot at saving the transplant. I had no clue at that time about these things.

Now, after 14 years with this disease, the co-morbidities of long term kidney disease are catching up with me. My gut feeling is I will need a transplant sooner rather than later. I have a few options at this stage:

- Transplant with Eculizumab
- Transplant with Plasmapheresis
- Status Quo

A transplant with Eculizumab has the best likelihood of success. Most people who have taken Eculizumab (about a dozen have probably had transplants around the world with Eculizumab) have not had any recurrence of aHUS. The problem? Not yet available in India. Costs prohibitively high to even consider importing. (Just to give you an idea, it would cost about $300,000) Realistically speaking, it might take upwards of 4-5 years for the drug to become available in India and reasonably enough proceed for me to be able to use it. Some people talk about clinical trials. Clinical trials for transplants? Hmmmm...

The third option is a status quo. Continue like I am doing now. On dialysis. Quality of life is not bad at all. However, things are happening. For sure. My skin looks alarmingly bad. My nephrologist has warned that my quality of life might be affected. He feels I should get a transplant as soon as possible. He in fact, wants me to meet the Transplant Surgeon and begin the process right away.

Which brings me to option #2. Transplant with Plasmapheresis. Plasmapheresis is not a sure shot solution for recurrence. It may work. It may not work. No one can say for sure. It will be expensive though it can be done in Hyderabad itself. Donor will need to be figured out. But this is within reach. Yes, it will dry up a lot of my family's and my financial resources. But certainly within our reach. Unlike eculizumab.

So that is what I am thinking hard about these days.

... http://www.kamaldshah.com/2011/07/plasmapheresis-versus-eculizumab-versus.html

... http://www.kamaldshah.com/2011/07/and-then-all-of-sudden.html