Wednesday, September 24, 2014

Callousness towards the cold chain

I was considering a product for use recently. This was not the traditional Erythropoietin injection for which generally the cold chain is recommended. Cold chain means maintaining the product at a temperature of between 2 to 8 degrees centigrade to ensure that it remains effective when it is used. This is because the product contains certain ingredients that are effective only if maintained at that temperature. The moment you keep them outside the required temperature, the product loses its effectiveness and even after that period, if you bring it back to the temperature, it is no longer effective.

On the product I was reviewing, it was clearly written that it must be maintained between 2 to 8 degrees centigrade. The samples that I had got did not come with an ice pack (which is the most common way to maintain the product at the desired temperature for short periods when they are delivered to the end user). I was surprised. I thought that the person who delivered the product might have messed up.

I irately called up the vendor and told him that the product was delivered to me without an ice pack. I was shocked by his response. He said this product did not require to be maintained at cold temperatures! I told him it clearly stated on the pack. He said that they write that but it really does not require the cold chain.

I gave up.

The horrifying thing about this is that this product is in use at many hospitals from ages. I can almost guarantee that many people are using this without realising that the product is not effective. Many patients have been put at untold danger by using this product. When the vendor himself is so callous about such an important aspect, where does that leave the poor patients?

I remember reading some peer reviewed papers in medical journals that tested this product and found it to be as effective as another product that did not need a cold chain but had certain other disadvantages. Somehow Indian doctors were a little apprehensive about the results. I now know why!

I sometimes feel very helpless. Before any product reaches me, the end user, a patient, how many people does it go through? Even if we assume that the manufacturer did a good job (it is in his interest that the proper conditions are maintained because the effectiveness of his product is extremely important for him), what about the numerous other people who would not be as careful? Even if one person is not careful enough, the product could be rendered ineffective!

With so many challenges faced by us patients, here is yet another.

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!