Monday, April 30, 2012

A small tweak to my dialysis schedule

I dialyze six nights a week, about seven hours each night. I take Sundays off. 

I swim six days a week in the morning. Wednesdays, the pool is closed for maintenance.

How are these related? Well, I usually don't swim the morning after I don't dialyze. So, until now I wouldn't swim on Mondays because I did not dialyze on Sunday nights. 

Why wouldn't I swim the morning after the night of no dialysis? I feel a little heavy in my chest the day after I don't dialyze. It is probably excess fluid. It could also be that I am so used to being almost close to my dry weight that even a little fluid makes me uncomfortable (which is actually a bad sign because I am going to be dialyzing irregularly during my US trip in July - anyway, we'll deal with that later).

So, I don't swim on Mondays because I don't dialyze on Sundays. And Wednesdays the pool is closed. So, that way I end up missing two days of swimming during the week.

So, what I now do (with the great co-operation of the two techs from NephroPlus - thanks guys!) is to dialyze on Sundays and skip dialysis on Tuesdays. That way I coincide my dialysis weekly off with the pool weekly off! 

This has had another unintended benefit. Sundays being a holiday I am generally not that busy plus I usually do a movie and dinner out with my parents. These are all sure recipes for fluid intake disasters! So, if I dialyze on Sundays, I can be sure that all that extra fluid is removed without any delay.

'A stroke of genius', did I hear you say? Thanks!

Thursday, April 26, 2012

With Heparin on Dialysis, you need to strike a balance

First off, why do we use heparin during dialysis?

During dialysis, as you might be aware, the blood goes out of the body to be filtered through the artificial kidney. Now let us move away from dialysis for a bit and think about what happens to your blood when you get cut and blood oozes out? It clots soon enough, right?

This is an inherent characteristic of blood. It clots when it is out of the body! Another example of the amazing way our body works. The body has figured out a way in which it causes the blood to clot when outside the body but not when it is within!

Coming back to dialysis, when the blood is drawn out of the body, the body does not realize the reason the blood is going out. So, it would tend to begin the clotting mechanism and cause the blood to clot which would be disastrous! So, what we do is to continuously pump a small amount of a substance that prevents this clotting from happening. This class of substances are also called anti-coagulants.

Heparin is one such anti-coagulant.

So, what happens in a dialysis machine is that a small quantity of heparin is taken in a syringe, diluted many times and fixed to a pump that pumps the resultant solution very slowly into the blood that is coming out of the body to prevent this clotting from happening.

Now the quantity of heparin that is used must be the bare minimum that is required to prevent clotting. The reason is that heparin can have some very deleterious consequences. When you use too much heparin, the time taken for the blood to stop oozing from the arterial and venous sites after terminating the dialysis session may be too long. Too much heparin can also lead to a condition called Thrombocytopenia which means a reduction in the amount of platelets in the body. Long term use can lead to thinning of the skin and even osteoporosis.

So, folks like me who intend to live for many more years need to be wary of the long term side-effects of heparin and make sure techs who do not know about the long term effects do not use too much heparin! Chances are, however, that they will not use too much. Heparin is frightfully expensive, you see!

Sunday, April 22, 2012

Pump up your dialysis speed!

One of the most important factors in the quality of your dialysis is the dialysis pump speed. This is the speed at which the dialysis machine draws blood from your arterial line, puts it through the dialyzer or the artificial kidney and then returns it to your body through the venous line.

The higher the blood pump speed, the better your blood gets cleaned by the artificial kidney. This is mainly because with higher pump speeds, more blood gets drawn and put through the artificial kidney which allows the artificial kidney to remove more and more toxins from the blood.

This is a picture of the blood pump from a Fresenius 4008S machine and the number '195' in the picture is the pump speed.

So, as someone on dialysis, it is in our interest to have the highest blood pump speed that our body and vascular access can tolerate and is required. Note that this is true only for people on conventional in-center dialysis who come twice or thrice a week. For those on daily dialysis, the pump speed can be lower to give a more gentle dialysis.

Many people complain that they do not feel 'good enough' on dialysis. This could be because they are not getting enough clearance or not enough toxins are being removed by dialysis. Ideally of course, the frequency of dialysis or the duration of the session must be increased. But if that is not possible, the next best alternative is to increase the blood pump speed. This will result in increased clearance and the person feels better.

Technicians and nurses sometimes do not risk high blood pump speeds because it can lead to some complications. However, they should gun for the highest pump speeds that the patient can tolerate. The pump speed must be gradually increased and if the patient does not complain of any problems and good flows are obtained (no air bubbles appear in the arterial line), then the pump speed is all right.

A word of caution though: every change in pump speed must be signed off by your nephrologist as every individual is different and may have different conditions (especially cardiac related) which may necessitate a different line of action.

But this is something definitely worth considering and talking about with your nephrologist and your technician or nurse.

Tuesday, April 17, 2012

Hope on the horizon for dialysis patients: Clinical trials begin on the WAK

There is some very exciting and unexpected news for us dialysis patients! Dr. Victor Gura's Wearable Artificial Kidney (WAK) is soon going to be undergoing clinical trials. Under the United States FDA's new Innovation Pathway Program, this device among three devices in all have been selected for accelerated evaluation to bring them to the market.

To be very honest, I did not expect this to happen for a few years. But to mine and everyone else's surprise, this program was recently announced and the WAK was one among the devices chosen! More details on how the clinical trials are going to be held are given in Dr. Peter Laird's blog here. I quickly did the math on the slide on Dr. Laird's blog and found that in less than a year the clinical trials are going to be completed. That is of course, assuming that the different stages will happen immediately one after another. That may not be the case. Two years maybe, then? Still not bad!

Here is a picture of the WAK:

When I put the WAK on the Cover Page of the first edition of the Quarterly Newsletter of the Hyderabad Kidney Foundation, I was accused by many of giving false hope to dialysis patients since the device was believed to be decades away from use by people like you and me. So, now you see? The hope was not false! But seriously, at that point even I believed it was decades away myself and said as much in my write up in the newsletter.

Who knew that the FDA would bring up such a scheme and endeavor to bring these life changing devices to the people much sooner?

How soon would the device be now available for people like you and me? Well, I would think about two years in the US and ten years in India. Considering that the NxStage System One is still not available in India despite being available in the US for years now, I am still pessimistic about the availability in India. However, on the positive side, the device is small enough to be picked up from a shop! So, like the iPad which my brother picked up for me on a trip to the US, this device too might just be picked up on a similar trip. Prasan, are you listening? :-)

Wednesday, April 11, 2012

Dialysis pricing conundrum

Should dialysis prices be high or low? A simple question like this can confound nuts like me!

As a patient, I feel pricing should be as low as possible. It is, as it is, an expensive treatment. How can ordinary people afford the treatment if the prices are too high?

However, if prices are too low, can quality really be maintained? Can people who value quality and are interested in providing quality remain in business if the prices fall too low? Yes, this may seem like a lame argument from someone who earns his living from dialysis. But think about it without being biased. It is true.

There are dialysis providers at both ends of the spectrum and many in between. The problem comes when people start expecting quality from the low priced providers and low prices from the quality providers. The unfortunate truth is both quality and low price are simply not possible together.

We must remember a simple truth. Businesses are here to make money. Whether it is the restaurant business, the movies business or the healthcare business. Everyone is there in it for the money. Despite tall pretentions of doing good, the primary motive is money. Satisfying taste buds might be a by-product. Entertaining people might be a by-product. Providing quality healthcare might be a by-product. The primary motive is to make money. Neither the providers nor the customers should ever forget that.

When it comes to charity organizations, we must remember the primary motive is not quality. The primary motive is to benefit as many people as possible. The primary intention is to reach people who need the treatment. So, you cannot expect any frills. You should be happy to get the basic dialysis treatment. Which is also all right because at least people continue to get dialysis. People, who otherwise might have died from lack of dialysis are alive because of this.

When we accept these two aspects, the rest follows easily.

Friday, April 6, 2012

The winds continued to blow, the sun continued to shine

The guy in the car at the traffic signal continued to honk. People continued to rush to work.

Not one thing changed because Chandrashekhar died.

The smiling 20-something year old on dialysis finally lost his battle with kidney disease. It struck me as weird that I was at a party that evening. It struck me as weird that people around me were all having a ball. The cake was cut. Snacks were served. There was laughter all around.

Not one thing changed even though Chandrashekhar died.

For Chandrashekhar, it was the end. That was it. There was no more. His entire life had ended. For the management at his dialysis center, his name got added to a report. A certain count got increased by one. And everyone moved on.

Not many of us realize how the world simply continues to function even after someone dies. After someone I have known dies, I find it very strange that birds continue to fly in the sky as if nothing has happened. People on the road go about their daily chores like nothing has changed.

For the individual however, it is all over.

As I keep hearing about one loss after another, all I feel is lead in my heart.

Wednesday, April 4, 2012

NephroPlus comes to Bangalore

NephroPlus launched its first center at Bangalore in Koshy's Hospital in Ramamurthy Nagar. The unit has come out really nice and we feel it is one of our best units so far. We're starting with ten machines.

This is a huge step for NephroPlus as it is our first unit outside the state of Andhra Pradesh. Managing units in one state is fine but the moment you start talking about two states, things are entirely different. Yes, even though we moved out of the city of Hyderabad a few months back by launching our Mahbubnagar unit, starting a unit in a different state is a different ball game altogether. You not only have to manage a different geography, you have to also be sensitive to a different culture.

The biggest challenge in my opinion would be imbibing NephroPlus values and the NephroPlus culture into the team at Bangalore. The technicians and nurses have typically been working at different units and have their own thoughts and processes. It is imperative that they learn our ways and get assimilated into our culture. The founders being physically away from the unit is not going to make this task easy!

As NephroPlus grows, I cannot help drawing comparisons to Effigent. The difficulties are similar. In Effigent too, we started off from Hyderabad and then opened an office in Bangalore. The difference in  cultures was stark. Assimilation did not quite happen.

In NephroPlus however, we have a specific plan to address this and hopefully we will. How we are able to do this will largely dictate our plans for other states we have lined up as well.

Our team is very excited to take on this new challenge and we strongly believe we will be successful!

Sunday, April 1, 2012

Blood Pressure on Dialysis: How low is too low?

Like most other folks on dialysis, when I was initially diagnosed with kidney disease, my Blood Pressure (BP) would skyrocket. I was put on a potent cocktail of anti-hypertensives or drugs that would reduce the BP. When I was diagnosed with Left Ventricular Hypertrophy somewhere in late 2005, I was put on Cardivas 6.25 mg twice a day and Ramipril 5 mg once daily. With this my BP nosedived!

I started feeling giddy very often. When I went back to my cardiologist, he said about the BP, "Lower the better!" He did reduce the dose however but the BP would not rise. He asked me not to worry about it. Soon however the giddiness disappeared. It could have been due to something else (dry weight going up, perhaps) or I might have got used to low BPs.

Either way, I continued the drugs because they were good for my heart. Daily nocturnal home hemodialysis also did a world of good to my heart and my Ejection Fraction which had gone down to 30% came back to a healthy 70%!

Coming back to the BP, I often do 80/50 pre-dialysis and 90/60 post dialysis without any symptoms of hypotension. So, I have kind-of got used to low BPs now. I don't have any symptoms purely on account of low BP. When I pull out too much fluid however, I have those symptoms - cramps, giddiness, weakness etc. But not due to my low BP.

I have been a little concerned about this BP though. Is a low BP harmful for my overall health? I have heard from some doctors that they do not take up major surgeries if the BP is too low because of the risk of complications of general anesthesia.

So I talked to my HPS classmate and cardiologist Anuj Kapadia about this. He said that as long as I did not have any symptoms, it was perfectly all right. So, I am going to let this be for now.

The key, I think, is the symptoms. If you are feeling all right, don't do anything about it.