Sunday, August 31, 2014

Bad Bone Pain - unable to get a handle

I am suffering with really bad bone pain. It is mainly in the feet and the back side of the leg just below where the leg joins the hip. Any kind of movement that strains these two area results in pain. When I walk, when I climb up or down stairs etc.

I went to my nephrologist, he looked at the blood tests - Calcium, Phosphorus, PTH, Vitamin D - all seemed within range for dialysis patients. He then thought it could be related to micro-circulation issues to the lower limbs and put me on some medication for improving this. I somehow doubt if it is this. Its also been more than a month that I have been taking this medication with no relief;the pain has only worsened.

To make things worse, I thought somehow that the pain in my feet as related tot he nerves and went to a neurologist who, after some tests which showed the nerves were in really bad shape, put me on something for the nerves.

So, while 8 tablets have been added to my pill box per day, I am most sure any of the additions are doing any good.

I am really worried about this pain as we are not even on the right track!

A learned nephrologist at a recent meeting had said that in dialysis patients they are generally able to control everything but mineral and bone disorders are something they just don't seem to be able to get a handle on. Very ominous!

I am planning to go back to my nephrologist this week to discuss this. I am really hoping he has some good ideas!

Friday, August 15, 2014

Very informative webinar on Atypical Hemolytic Uremic Syndrome with Dr. Tim Goodship


Many nephrologists in India very rarely come across a patient with Atypical HUS. For many patients,  diagnosis with this disease becomes an endless journey of uncertainties. So little information is available on this disease that doctors hardly have any resources to look towards to be able to manage their patients well.

Prof. Tim Goodship from the Institute of Genetic Disease in Newcastle University, UK has been one of the leading researchers on this disease. He has been working on this disease for the last twenty years! A lot of the authoritative papers that are referenced by doctors around the world are authored by him.

EURORDIS and NORD, organisations that have been doing fantastic work in the area of rare diseases have setup a website called rareconnect.org that aims to bring together patients, doctors and researchers of various rare diseases and improve interaction, funding, policy making and support for patients hit by rare diseases.

rareconnect.org recently organised a webinar on aHUS with Dr. Goodship that has some really great information on this disease and some latest protocols. Anyone with an interest in this disease must watch it.

Here is the link.

Wednesday, August 13, 2014

Donate to The Wearable Artificial Kidney Foundation - help change the lives of many



I am a huge believer in the WAK. I feel that this device has what it takes to really change the lives of the thousands of people on dialysis. There have been some doubts expressed about whether the device would actually be successful. I have some reasons to believe that these concerns would be addressed very soon.

The biggest reason for this belief is that the FDI in the US has chosen this project, among just three projects for its accelerated approval program. This totally shows that the FDI genuinely thinks that this device can be successful and would really make a huge difference to thousands of dialysis patients.

So, I have a lot of faith in Victor Gura and his team and am certain that they will take this project to fruition. I had the ultimate privilege of meeting the man himself when he visited Hyderabad to speak at the HDU conference earlier this year. I found him to be an extremely affable, down to earth and confident person.


Currently, they are raising funds to do clinical trials and complete the requirements for being approved by the FDA. Unfortunately, they are short of funds to do this. There have been some corporate supporters who suddenly withdrew their funds. I have written about their suspected intentions here. Well, whatever their intentions, now the WAK needs funds to be able to proceed. They have now created a WAK Fund to help complete their project. They have requested the public to donate and help them to do this.

Many people, who sit in their board rooms and discuss stuff between endless cups of coffee would scoff at Victor Gura and his team and laugh at this attempt. They would think that only people with huge bank balances would be able to help see through this project. To them, I quote Steve Jobs (of whom I am an unabashed fan):

"Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do."

I am going to donate from my meagre savings to Gura's WAK Fund. I would urge you to do as well. The donation amount can be as little as USD 5! So do your bit. Whatever you are comfortable. For as little as USD 125, you can get a T-shirt with the logo of the foundation embroidered! People with other currency credit cards can also donate. If you don't want to go through the hassle of donating online, please let me know and I will do it for you. But do donate! Thanks!

Click here to donate.