Friday, July 30, 2010

Home hemodialysis training finally arrives in India!

I am off to Chennai for a week this coming Monday, the 2nd of August. Guess why? Yes, Fresenius, the world leader in dialysis machines is starting a training program for home hemodialysis. I will be the only person undergoing this training to start with. My needs are slightly different because I have been doing daily nocturnal home hemodialysis for more than four years now. I have had a tech to help, of course, but I am able to do most of it myself. So, I have a specific set of training needs which the Fresenius team will be fulfilling.

Subsequently they have plans to start home hemo training spread over 6 weeks for those who want to take up this modality. That training will be from scratch.

This is huge!

I honestly did not expect this to come to India so soon. Well, it is really not that soon but judging by the way things were going - a urologist had once asked me why I needed so much dialysis - I really did not expect things to fall in place so quickly. The Fresenius team is very committed to this and let's hope this commitment continues.

The other person who is involved closely with this endeavor is Dr. Georgi Abraham, senior nephrologist in Chennai. Dr. Abraham is widely considered to be one of the pioneers of peritoneal dialysis in India. His contribution to home hemo will be most welcome.

What am I looking for from this program? The main thing I am hoping to learn is about managing emergency situations. For example, how do I handle a needle that has dislodged from the site? How do I handle hypotension and cramps? What do I do if I need to discontinue a session midway?

I am hoping I will be able to learn these things and get a little practice too.

I hope to have a reasonably good internet connection while I am in Chennai. I will blog the progress and happenings each day. I am really excited. Hopefully this should open the floodgates for home hemo in India!

Friday, July 23, 2010

Why is the government in the business of electricity?

A few days back, when I got home, there was no power. It was not unusual. Though we've not been having scheduled power cuts, a one-off power cut such as this was not surprising at all. The power however was not restored for almost three hours. My parents and brother were also home by then. We checked with our neighbours. Everyone had power. It was only our house that did not have power. Now, this was unusual.

I checked the main circuit boards. Nothing had tripped. I also confirmed with my father that the electricity bill had been paid. Then why did we alone not have power?

It was nearing eight in the evening. We called the electricity board's complaint number and made a complaint. They gave us a complaint number. Those in Hyderabad or familiar with the city know the value of that complaint number. Close to zilch.

We then got the number of the sub station of our area. We called the number and spoke to someone there and explained the problem. We told him that we really needed the power to be restored asap. We also added 'Aapko khush kar denge' (we will make you happy) at the end. You might actually squirm on reading this but please understand that nothing would have happened if we did not promise him this. I would have to miss my dialysis session as a result.

Two people from the sub station arrived in ten minutes. They checked everything. In the house everything seemed to be all right. They then went to the pole from where we got our power and found the problem. They returned to tell us. There had apparently been some repairs that were carried out that evening. The technicians had not reconnected our connection to the mains!! Can you beat that? Had they forgotten? Why did they not reconnect it? These guys had no idea.

I asked them to connect the lines then. They said they could not do it. It could be done only the next morning. I would have to skip dialysis, I thought. Which is not such a bad thing especially since I was on daily nocturnal. But one of the guys suggested that they could put a temporary hack in place which would give us power till the next morning when the actual line would be connected. We asked him to go ahead after assuring ourselves that this did not pose any risk.

Within half an hour, the power was restored. We had to shell out seven hundred rupees for some wire and making the guys 'khush'.

Which brings me to the point of this post. Why is the government really in the business of providing electricity to the people? Isn't this best left to the private sector? It was like this in telecommunications too. The moment private companies were allowed entry there was a huge improvement in quality. Today, even though there are government companies in the telecom sector, there is a big difference in quality and customer service when you compare with private operators.

I really feel that power should be opened up to the private sector. Only then will see any improvement in service.

Tuesday, July 20, 2010

Just how do you keep the PTH at a good level?

The normal range of the PTH in my lab is 15 to 65 pg/ml. For people on dialysis, it is said that the PTH should be at least twice the upper limit of normal. So, my PTH should be above 130 pg/ml. I have been having a tough time controlling this. And it is important that I control this because it could have contributed to the bone pain I had for so many months.

There are two aspects to PTH control on daily nocturnal hemodialysis. One is the concentration of Calcium in the acid part of the dialysate. Calcium has a direct impact on the PTH. In daily nocturnal, you are exposed to the dialysate for close to seven or eight hours every day. The impact this has on the PTH is far greater than the impact on people who are on regular thrice a week in-center hemodialysis.

The second factor is Vitamin D supplements. The function of Vitamin D is to better absorb Calcium from the intestines. Vitamin D, therefore, also causes a PTH drop. It is still difficult to say whether the first or the second have a greater impact.

I have been taking calcitriol as my Vitamin D supplement. This has the effect of causing serious hypercalcemia (increased Calcium) which is dangerous. My PTH with a 2.75 mEq/l Calcium acid dialysate and 0.5 mcg of Calcitriol went up to 442 pg/ml which I thought was a little high. So after consulting with Dr. Girish Narayen, my nephrologist, I switched to a 3 mEq/l Calcium acid dialysate and changed the Vitamin D supplement to Paricalcitol (Redispar) 0.5 mcg per day. After about 10 days of this change, my PTH is now 104 pg/ml which is a little low!

How do I keep the PTH around 150 pg/ml? This whole thing is really so difficult to do! With multiple factors that influence the values, all you can do is trial and error to arrive at the correct formula to get a good PTH-Ca-P balance!

Friday, July 16, 2010

Row, row, row your boat...

The amazing Bill Peckham is at it again! This dialyzor from Seattle, USA is off on a three day river rafting adventure down the River Rogue along with two other dialyzors. They will all be using the NxStage portable hemodialysis machine. They will be staying at night at lodges accessible only by the river. They have sent their dialysate bags in advance. Bill says he has a 'wanderlust comorbidity'! He has travelled and dialyzed in 34 countries!!!

Bill is an absolute inspiration for me. When I look at Bill, I realize that dialysis need not limit my life in any way. I can choose to do whatever I want and make it happen. All it takes is a little planning. In the end, the fun is well worth the effort.

Another very inspiring event is also happening around the same time. Erich Ditschman, on dialysis, will be undertaking a 225 km kayaking trip down the River Grand! He will be dialyzing at night on the NxStage machine. This is going to be a fund-raiser where Erich hopes to raise $20,000 for research on dialysis and helping kids get dialysis. Beat that!

It is things like this that prove that a person can do whatever he wants even on dialysis. It does not prevent you from living a full life. One important point to note is that both Erich and Bill are on daily nocturnal home hemodialysis. And they both use the NxStage System One. It is a wonder that a small machine such as this can change so many lives in so many ways. A lot of what people like Bill and Erich are able to achieve is thanks to this wonderful machine. Bill did travel a lot prior to the NxStage. But I am sure this machine allows Bill to pull out all the stops.

The Indian dialysis community must gain access to this machine really soon.

Thursday, July 15, 2010

What can you do to avoid getting cross infections?

(Cross posted from the Dialysis in India website)

Yesterday I wrote about how cross infection is a very serious problem facing dialyzors today. Who wants to deal with another chronic, life-threatening condition? Today, I am going to discuss what we can do to prevent this.

The best solution of course, is to dialyze at home. When you dialyze at home there is very little exposure you have to possible sources of cross infection. Peritoneal dialysis is anyway, usually done at home. It is also possible to do hemodialysis at home. There are many people in India too who do hemo at home. However, you need to be fairly meticulous and proactive about your health to do this. This is definitely the best way to prevent cross infections.

If, however, you feel home dialysis is not for you, then you should go to a center that follows the CDC guidelines strictly. Make sure that the center does not use common trolleys for starting and closing dialysis sessions, does not use the same betadine, spirit, plasters, gauze and other disposables among diferent patients, has separate sections for positive and negative patients, disinfects machines after every session and is generally clean and hygienic. Nephroplus at Hyderabad is one such center. (Disclaimer: I have no financial association with the company and do not make any money if I refer patients there!)

In your dialysis center, avoid reusing dialyzers and tubings if you can afford using a new set every session. If you cannot, then atleast try to avoid reusing tubings. Reuse processing is a major source of cross infections. If you must reuse both dialyzer and tubings, ask if the center has separate washing rooms for positive and negative sets. Insist that the tech or nurse who is starting or stopping your session uses a fresh pair of gloves.

Evaluate your center and change if you are not happy with their cross infection prevention measures. No amount of caution is really enough in this matter.

Wednesday, July 14, 2010

The scourge of cross infections in the dialysis unit

(Cross posted from the Dialysis in India website)

A third of people who are on maintenance hemodialysis eventually get infected with a chronic viral disease. Isn't this shocking?

The disease is usually Hepatitis C. Some people also get infected with Hepatitis B or HIV. Hepatitis C is a disease that affects the liver. 85% of people with Hepatitis C proceed to liver cirrhosis necessitating a liver transplant. As if losing your kidneys was not enough!

What is the primary reason behind this?

There is only one. Human error. Yes. Human error. A person who is already suffering with a chronic condition, who is dialysis dependent is handed another sentence. Simply due to the carelessness of an individual. This is so horrible. And the attitude of most professionals towards this in the dialysis industry is so callous that it can be only described as criminal. They simply do not realize, and for the most part, neither do many patients, what is happening here.

Once a dialyzor is infected with a virus such as Hepatitis C, there are more hurdles for a transplant. Most centers will prefer giving a kidney to a person who is negative (virus free) rather than someone who is positive. Even assuming that the person gets a kidney, the whole treatment after a transplant becomes all the more complex because the doctors have to keep in mind that the immunosuppression drugs can cause a flare up of the Hepatitis C virus causing further damage to the liver. Every decision needs to be taken keeping this in mind.

There are treatments available for Hepatitis C but the chances of success (eliminating the virus) are still quite low. Especially when you're on dialysis. This is because the virus is best treated with a combination of two drugs - pegylated interferon and ribavirin. The first actually reduces the viral load (number of virus copies per ml of blood) but the second actually helps keep it down. Ribavirin, however, causes severe anemia in people on dialysis. So, people on dialysis are treated only with pegylated interferon. This further reduces the chances of successfully treating the disease in the dialysis population.

(I am not trying to paint a dismal picture here. There are many people on dialysis who are successfully treated for Hepatitis C. So, if you're on dialysis and are positive, definitely consider treating it.)

The only point I am trying to make is that due to human error, many lives are being further spoilt. This is something that can easily be avoided. Units must follow stringent processes. There are a set of published guidelines by the Center for Disease Control that lay down the procedures to be followed and the precautions to take to prevent cross infections in dialysis units. All centers must actively follow these guidelines.

The problem with this infection is that you will know you have been infected only after a few weeks (sometimes months). So, no one can nail down why the infection happened and how. You can only guess. The disease itself is indolent. You don't see symptoms until many years. So, medical professionals take this fairly lightly. In young people, however, this is a really serious problem. Being diagnosed with kidney disease itself at a young age can be quite shattering. Having this additional cross to bear is totally unfair.

Tuesday, July 13, 2010

Enjoying my Tata Sky Plus

I recently took a Tata Sky Plus connection. We had a regular Tata sky connection. I wanted one more for my bedroom where I have a projector and a sound system. I had been watching movies using my laptop and was enjoying the experience of watching films on a big screen.

I was never into television. I barely watched half an hour of TV a week. I thought it might be a good way to relax on weekends. To start with, I took a local cable connection but the reception was terrible. I got a Hathway set top box from a friend who wasn't using it and hooked the cable wire to the box. There would continuously be waves on the screen. At one point, the video just stopped. So, even though I could hear the audio from the television, there wasn't any video.

I called the cable guy. He came, checked the stuff and said the problem was with the set top box. I decided to take an additional Tata Sky connection. I was pretty impressed with the channels they offered and the customer service. A little time on their website convinced me to opt for Tata Sky Plus. It had recording, pause and all that. Seemed quite interesting. At one point, I thought, I hardly watched any TV. Why would I ever need recording?!

I have no idea what prompted me to change my mind. I went for the plus.

The entire process was fairly simple. You call them and tell them your details. They put you on the IVR. You give your credit card information. They send the tech in a day or two. The guy comes with everything he needs. In about an hour or so, he is done. He showed me how to use it. Pretty straightforward.

There are some things I really like. Let's say you're watching something. Suddenly you get a call or need to answer the door. You don't have to miss anything. You press Pause and then return when you're done. You can even fast forward the ads when you're watching after a Pause.

This Sunday, we went for "Red Alert" (good film, by the way). Just before leaving I realized that Valkyrie and Da Vinci Code were scheduled to be shown on some channels. I set it to record both movies. Whenever I wanted to, I could watch the films!

You can record two programs at a time too!

Its definitely a good thing to have.

Saturday, July 10, 2010

Two months with my iPad

Its been more than two months since I got my iPad. It has been an incredibly useful device. I have stopped using my personal laptop unless absolutely essential. My email, music, pictures, important documents are all on the iPad. The best part is the 3G which enables me to browse the internet on the way to work and back.

Coming to the apps. I have about three screens full of apps. About half of them were free. The most expensive ones I bought were Pages, Numbers and Keynote from Apple for $9.99 each. Now, when I look at the apps I have, I realize that I regularly use only about 4 or 5 out of the 50 odd I have. Some of them I think I shouldn't have downloaded. I never use Pages and Keynote and come to think of it, it was not like they were going 'out of stock' or something that I should have rushed and bought these apps. I guess it was the initial euphoria!

There are a number of other apps that seemed like 'must-haves'. Penultimate, for example. It is an app that allows you to use your iPad like a notebook. Well, an actual notebook. It feels like it is made up of multiple  pages and you write using your finger or a stylus. It seemed really good. I bought it. How many times have I used it? Zero!

Then there is the Virtuoso Piano app. It allowed you to play a piano on your iPad. Best thing since sliced bread, I said to myself. I haven't opened the app after the first time. Ditto for WebMD, Dictionary, Google Earth (this app has an amazing UI, btw) and many others.

I don't regret that I got these apps though. The main reason behind this is that most of them were free or cost me less than a few hundred rupees. The reason people buy apps is either the fun element or the perception of being useful. And they don't cost a whole lot. So, its ok if you don't find it useful.

At the end of the day, I am able to use it in ways that make things easier and do things I wasn't able to do earlier. This in itself is worth the amount I spent on it. The benefit of being connected in a car, at the doctor's clinic, practically anywhere is unmatched. I am so glad I got the 3G model!

There is one problem though. Two months back, I found the perfect excuse to buy an iPad. I need to find a similar excuse to get an iPhone 4!

Friday, July 9, 2010

Soliris - do we really need to wait?

My primary kidney disease is atypical Hemolytic Uremic Syndrome (aHUS). This is a very rare disease in adults. It is more common in children. The problem with rare diseases is that they do not get too much attention. Researchers prefer to work on things that have more far-reaching benefits. So, a disease that affects a few hundred the world over does not have too many people working on it.

The chances of recurrence of my primary disease is fairly high after a transplant. This is what was suspected to have happened in my first transplant in November 1998. Recently, however,  a drug called Eculizumab (manufactured under the trade name Soliris by Alexion Pharmaceuticals in the US) has been found to help in this disease. It has not only helped children with an initial primary diagnosis of aHUS by helping to arrest the progression of the disease and the concomitant kidney damage, it has also helped prevent kidney failure after a transplant!

The drug however is still undergoing clinical trials for use in aHUS. It is approved for use in the US for another disease called Paroxysmal Nocturnal Hemoglobinuria. I don't think it is available yet in India.

The problem is the amount of time these clinical trials take and the amount of time these drugs take to become available for general use. They need to make sure the drug does not cause any other harm. For this, they need to try the drug on a large number of people with the problem. I would have gladly registered for a trial but it was restricted only to people in the US. Understandably so.

While I totally understand the need for such trials before beginning to use these on a wider scale, I feel frustrated that the process takes so long. There is something that can be done to change my life. Its just that I cannot use it yet.

I wish there was a way by which people could be allowed to choose whether they should use the drug or not. They should be allowed to sign a document that states that they assume full responsibility for any adverse effects of the drug and then they should be allowed to take the drug once the drug is preliminarily proven to be safe. Soliris has been used successfully in many cases where people have been given a new lease of life. There have been no cases of adverse effects at all. In this case, why should I wait for years before getting a shot at trying it?

Saturday, July 3, 2010

My pitch for home dialysis

Vinod Reddy pointed out recently that the Dialysis in India website did not have any information about home dialysis, something that I was so passionate about! Very true!

So, I went about adding a page about Home Dialysis to the site. You can check it out here. I also updated the Cost Comparison page in the site to include information about the initial and recurring cost of home hemodialysis.

I have been getting quite a few emails lately about the possibility of hemodialysis at home. So, I thought I must add these pages on the site asap.

Now, I have been doing home hemodialysis for the last 4 years. I would recommend it to anyone who is proactive about their health and careful. Careful because this is definitely not for those who are reckless. It requires the utmost care and precaution. It is more suited for those who are active and like to control all aspects of their health themselves. It is not for people who like to be taken care of by others. Nothing wrong with that. Just that home hemo is not for them.

Having said that, I would encourage everyone on dialysis to consider the option and discuss with your nephrologist. Get his/her buy-in definitely before even starting to plan for this. It offers great freedom and flexibility. It makes daily nocturnal dialysis doable. This is the gold standard these days in hemodialysis.

Friday, July 2, 2010

How to ensure patients get erythropoietin and not plain water?

Yesterday, we saw how important it was to maintain the temperature at which erythropoietin was stored. If the proper temperature was not maintained, it was equivalent to injecting plain water.

Who is best placed to ensure this? I feel the onus lies on the company making the erythropoietin. No one else has both the interest and the wherewithal to ensure this. Companies have the interest because they want to make sure their brands are seen as effective in the long run. They also have the wherewithal because they control the entire supply network.

Let me explain how they can do this.

The key is the number of stopovers from the time the injection is manufactured to the time it reaches the patient's refrigerator. The lesser the number of stopovers, the lower the chance of breaks in the cold chain. Transfers from one place to another increase the chances of improper temperatures being introduced. If there is a way of minimizing the number of hands through which the injections passes, it must be implemented.

Another important thing that should be ensured is that disruptions in the cold chain are not seen as 'lapses' but rather as 'possibilities'. The manufacturer must be open to taking back a reasonable number of units of the injections if it is found that the cold chain has been broken. The manufacturer must not penalize or make the distributor, vendor or patient bear the loss for this. This will ensure that no one accepts such breaks and immediately 'quarantines' the defective units for replacements from the manufacturers.

This is definitely possible. I used Johnson and Johnson's Eprex until a few years back. They had an excellent "No question asked" policy or replacements. If I, the patient, felt that any lapse in the cold chain had occured, I could get a replacement for the injections. I switched to Wockhardt's Wepox a few years back. Recently, I had a power failure at home for many hours during which the temperature was not maintained. I called the vendor and asked him to replace the injections. He was hesitant at first but then agreed if I gave him a letter stating the case. I did get the replacements.

As patients, we need to be proactive about this and insist on replacements. Remember that margins in the medical pharmacy business are extremely high and that should take into account incidents such as these. Companies should absorb such costs. We must never take this lying down. We are paying huge amounts for the injections. The least we can expect is that they work.

Thursday, July 1, 2010

Are you getting erythropoietin or plain water?

Most people on dialysis are anemic. They have lower than normal blood counts. The main reason for this is that their kidneys are not performing their duties as well as they should. Apart from cleaning the blood of toxins and excess fluid, kidneys perform a number of other important functions, one of which is producing a hormone called erythropoietin, which stimulates the production of red blood cells. So, when the kidney does not function, the body needs supplements of erythropoietin to maintain healthy levels of RBC.

The form of erythropoietin available widely needs to be maintained at a temperature of around 4 degrees centigrade. This is because erythropoietin is unstable at room temperature. So, for the etryhropoietin to act, it must be kept throughout at 4 degrees centigrade. If the temperature goes above this significantly, the liquid in the injection is not effective at all. It is equivalent to injecting plain water!

This is a very important factor which is taken lightly by many people involved in the distribution and delivery of the injection. The problem is most people do not realize the importance of maintaining the correct temperature. They do not realize that not maintaining the correct temperature renders this extremely expensive injection virtually useless.

Let us take an example in the Indian scenario. A distributor, who receives the injections from the manufacturer may have the requisite infrastrcuture to maintain the tempertaure since he is dealing with a large number or units. He delivers it to the pharmacy who delivers it to the patient through delivery boys. These delivery boys are barely educated and know little about hormones and their effectiveness. Though the pharmacy or their bosses might tell them about this, there is little hope of them giving it the seriousness it deserves.

If there is a break in the 'cold chain', as this is often called, there is little chance of anyone, least of all the patient being told about it. The fear of having to bear the cost of the wasted injection will outweigh any concerns for the well-being of the patients.

Who will know that this happened? No one. The effects of the erythropoietin are hardly immediate. Someone who is not benefitting from the treatment will know a few weeks down the line. And like most things in medicine, no one can pin point anything to one particular incident.

Tomorrow: What is a possible solution to this?