Saturday, September 20, 2014

What is wrong with medical journalism in India?

This morning, in my inbox, I saw an article from the Hindustan Times about a PD solution infecting a set of patients. Investigations revealed that a particular batch of fluid from an unspecified manufacturer contained 'extraneous matter'. The company is supposed to have called the patients who had been delivered the batch and asked them not to use that fluid and said it would be replaced.

No mention of the brand, no mention of the batch numbers, no mention of what the 'extraneous matter' was.

A few months back, in the US, there was a huge hue and cry over Fresenius' dialysis solution and it was all over the press. This is how it should be! Patients need to be told about which company manufactured the fluid. The manufacturer should issue a proper advisory to all its patients with the correct batch and ask them not to use it. What if the patients affected have not received a call? Is someone senior enough doing the calls to make sure no one is left out?

One of the patients affected had to undergo removal of his PD catheter. This, by no means, is a small thing.

Another major error I found in the article is this:

"...needs to undergo three sessions of dialysis a day, owing to her advanced kidney disease."

This line gives the impression that the patient referred to was in a very advanced stage of kidney disease! Anyone undergoing PD would need to undergo three 'exchanges' per day (and not three sessions of dialysis!). There is no connection between the stage of kidney disease and the number of exchanges. Anyone who is put on dialysis has crossed Stage 5 of kidney disease.

Newspaper journalists need to research their articles more carefully. Such statements can create a lot of misinformation among the general public. Without understanding the basics, journalists must not be allowed to cover such topics.

Medical journalists in India must take a leaf out of the newspapers of their counterparts elsewhere!

Thursday, September 11, 2014

Advised a major surgery

Yesterday I had written about the diagnosis for my bone pain in the hip area. I went to the orthopaedic doctor and he has given me three options:
  • Grin and bear the pain until I can
  • Undergo a major surgery involving four days of hospitalisation, four weeks of rest and six months for complete recovery
  • 'Try' an injection that may or may not work, has to be injected in the Operation Theatre, and if it works, can give me relief for a couple of years

Mysteriously, the pain has reduced almost instantaneously! :-)

On a serious note, I am planning to see my nephrologist this evening to get his thoughts on this. I really don't want to go through a major surgery at this point. For dialysis during the four days of vacation in the hospital, I would need to be taken on a stretcher in an ambulance to a dialysis centre!

My initial thoughts: bear the pain until I have absolutely no other option. Then go for the big surgery so that it is a 100% solution.

I might change my mind of course. After all, I am about as indecisive a Libran as you will ever find.

Wednesday, September 10, 2014

Bilateral Cam Impingement

My nephrologist asked me to consult an orthopaedic doctor for the bone pain I've been having in my hip area. So, I went to one and he examined me and got an X-Ray done. After seeing that X ray, he asked me to get another X-Ray in a particular angle. This one was tough. The tech there made me lie in a very weird position! He tried thrice but could not get the desired results!

The orthopaedic doctor then said that there was some extra bone growth in my hip joint, something called a Cam impingement and this was causing the pain. He said we would need an MRI and referred me to a diagnostic centre where they did a good job with this particular type of MRI. He also showed my X-Ray to a colleague as if it was something very fascinating!

So, off I went to this diagnostic centre and got my MRI done. When I met the radiologist (who is one of the few in the city who do this type of MRIs well), he asked me to return in a couple of days and to bring any past X-Rays I might have. He then saw the X-Rays and stared at them, like forever! He kept rummaging through the different X-Ray scans I brought and stared at them with a deadpan look on his face. I was getting worried. What the hell was happening???

He then said he would like to do another MRI. I said ok and another MRI was done. He then said the second MRI did not give any additional information - apparently he was looking for something and he did not find it. He then repeated the staring endlessly at the X-Rays. I asked him if there was anything to worry? He said that there wasn't anything to worry but it was just interesting. He asked if he could keep one of the X-Rays! I said ok. He said the orthopaedic doctor would tell me what needed to be done.

Apparently, a similar X-Ray was done in 2009 and the changes were apparent even in that X-Ray. When I looked back in my prescriptions file (I file every prescription in a file), I did find a prescription from another orthopaedic doctor with notes of a similar pain at that time! The only thing prescribed was Dolo 650 mg (paracetamol).

I am going back to the orthopaedic doctor today. I wonder what's in store for me. I don't mind another few Dolos! I just hope it is nothing more than that.

'A' is a normal joint. 'B' is a Cam impingement

Wednesday, September 3, 2014

And now, an infiltration

I use the buttonhole method to do my own cannulation every night to begin dialysis. I use a pair of sites and alternate them each night. From the last few times, the venous site has been paining while inserting the needle and for a while after. However, a couple of nights back, the pain did not subside but continued and I had a restless night due to that. I decided to change the site.

So, last night, I took a sharp needle and chose a different site, trying to avoid the huge aneurysm in my left upper arm. Many doctors have been quite alarmed on seeing that aneurysm and have advised me to get it checked immediately. I have been seeing Dr. P. C. Gupta, a very famous vascular surgeon regularly having it checked and getting his assurance that there was no chance that it would rupture.

So, I chose a site just a little away from the aneurysm and carefully cannulated with a sharp needle. The needle went in fairly well. Once Guru, the dialysis nurse who comes to help with my dialysis, connected the lines however and switched on the pump, I could feel a vigorous throbbing at the end of the needle. The machine also alarmed almost immediately. I told Guru that something was wrong with that site. He said that the needle was probably touching the lower wall of the vessel inside. He immediately stopped the pump and removed the tapes of the needle and withdrew it partially. While withdrawing, he felt a sensation that told him that the needle was coming out from the lower wall of the vessel. This meant that the needle had gone through the lower wall as well!

Guru changed the angle and made sure that the flow was unobstructed and we then began dialysis.

A small swelling had also formed near the area. Guru took some ice and massaged the area for a long time until the swelling subsided.

We both felt I was lucky that we detected this immediately and could take action. Sometimes infiltrations can be quite bad.

It is incidents like these that make me frustrated. Seventeen years on dialysis can take its toll. These days, again, I am tempted to go for a transplant. The hassles of dialysis are really getting to me. The two needles every day, such incidents once in a way, and more than anything else, the side effects of long term kidney disease - neuropathy, bone disorders and whatever else are all becoming too much to take.

Unfortunately for me, a transplant is not that straightforward. The chances of recurrence are high. If it does not work, it would be back to square one and a lot of money and effort down the drain.

However, let me at least write to Dr. Tim Goodship of Newcastle and see what he says about the whole idea. He was the person who discovered the genetic mutation that I have (CFH/CFHR1 Hybrid gene) that is believed to be the cause of my Atypical Hemolytic Uremic Syndrome.

In the meantime, only a breathtaking new device from Apple or another Cruise can cheer me up!

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 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. 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.