Saturday, April 30, 2011

Those on HD don't have the strength to come for support. The rest don't need support.

The Hyderabad Kidney Foundation organized a patient support group meeting this evening at NephroPlus' East Marredpally branch. All of two people showed up. One of them was a transplant recipient. The only dialysis patient who came, came at 6 p.m., a full hour behind schedule and I suspect he came to get a missed Erythropoietin shot.

I honestly did not expect to get a huge a crowd. I expected around 10 - 15 people to come. So, I was way off. I probably misjudged the patients.

Here is how a hemodialysis patient probably thinks: "The three times that I need to go to a (expletive) hospital are the three worst times of my (expletive) week. And you want me to come on my day off to a (expletive) hospital!"

So, the patients are probably going to do everything they can to stay away from anything remotely resembling a hospital - let alone a standalone dialysis center! Hemodialysis also drains many of them out so completely that they barely have the energy to do anything. If they actually have energy left, why would they make an effort to go for a boring support group meeting?

We had informed a few PD folks too to come. The sole reason PD folks do PD are that they don't want anything to do with HD. Most PD patients are leading totally normal lives anyway. So they don't really need any support. So, why would they come for the meeting?

Where does that leave the support group initiative? Search me!

Friday, April 29, 2011

Root vegetables and me

(Note: This post is best avoided by non-Jains. You just may not get it.)

I was born a Jain. Jainism is a great religion. Like all religions, Jainism has also been interpreted differently by different people through time. That is why you have sects and sub-sects. A common thread that runs through all sects apart from the basic principles is not eating root vegetables - potatoes, onions, ginger, garlic etc.

I have been an on-and-off eater of root vegetables. When I was diagnosed with kidney disease in 1997, I was off roots. I stayed like that through the first few years. I was fairly strict about it. I understood the significance of it and was a stauch follower of most aspects of my religion. Hence root vegetables were a strict no-no.

Over the years with kidney disease, I tried a lot of alternate therapies that claimed to cure kidney disease. Each came with its own diet restrictions. Fluid restrictions were of course always there. At times I was in a situation where the alternate medicine therapist would have one set of diet restrictions and the regular doctors (allopathic) would impose another set of restrictions. The only way out was to eat only what was allowed by the intersection of both diets! At one time, I was allowed only buttermilk and rice with a hint of moong dal for breakfast, lunch and dinner!

When you are subjected to such diet restrictions (especially with me being such a foodie), you take it up to a point. After that, something inside you snaps. You can take it no further. And then you rebel. You say "Fuck You" to every diet restriction and go berserk. This is one of the things that happened to me. One day I decided to start eating roots.

I still eat roots. Some people in my family ridicule me for this. I honestly cannot help it. They have not been through what I've been through. As I keep saying kidney disease is more of a mental disease than a physical disease.

Coming back to Jainism, I read once on a forum for Jains, that unfortunately Jains of today have made Jainism a religion of "You can't do this. You can't do that.". Full of restrictions. Focussing too much on what you eat and drink. We have reduced it to a diet. There are so many other beautiful aspects of Jainism like Aparigraha and Anekantvad but we tend to only focus on the food part of it. Today a Jain is identified by "No Onion No Garlic" which is ridiculous.

I am not for a moment saying that eating root vegetables is right. What I am doing is wrong. No doubt about it. However, for a moment, look at the history. Then judge.

Wednesday, April 27, 2011

Hyderabad Kidney Foundation patient support group meeting

The Hyderabad Kidney Foundation is organizing patient support group meetings on the last Saturday of every month at 5 p.m. at one of the centers of NephroPlus dialysis centers. This month is the first such meeting. Its on Saturday at 5 p.m. at NephroPlus' East Marredpally center. You can get directions to the location here.

What will happen at these meetings?

Well, first there will be introductions which could be as simple as "Hi, I am Kamal" or as detailed as "Hi, I am Kamal, 25 years old, on hemodialysis for x years, followed by PD for y years, transplant for z years. I am currently working for ABC company and my hobbies are e, f and g". Totally up to you!

Then I was thinking one featured patient will share his/her story and we could have a brief Q&A. Then we could share common problems and solutions. In the end we are trying to rope in a nephrologist/dietician/expert to talk a little about one important topic followed again by a Q&A. We'll round it off with tea and biscuits. All in all, an hour and a half max.

Of course, we're open to suggestions on the format and we'll go with the flow and keep tweaking it to suit everybody's taste.

So, if you're on Hemodialysis or Peritoneal Dialysis, have received a transplant, have donated a kidney or have any other type of kidney disease and are around Hyderabad / Secunderabad on that day, we would be happy to meet you!

Tuesday, April 26, 2011

Blood leak again

It happened again last night. Thankfully it wasn't anywhere close to last time. I awoke feeling something wet on my arms. It was around 3 in the morning. To my horror I realized it was blood. I switched on the light and assessed the situation. As usual it was the arterial needle from around which blood was oozing out. The sleeve of my T Shirt was also wet with blood. It wasn't as bad as last time but there was enough blood for me to be concerned and wake Jayaram.

Jayaram removed the plasters around the arterial needle and used a piece of gauze to clean the blood around it. He then pushed the needle a little more inward and taped it again. We watched for a while. It seemed all right. We went back to sleep.

It is incidents such as these that have me worried. There are times when I dialyze alone. What if such a thing happens then? I am not sure if I will be able to manage alone. With only one hand to do things (the other hand is the one the needles are in - you can't do much with it) and blood oozing out, it can be quite a situation.

My parents made me promise that I would bever dialyze alone when they were on their US trip. Good thinking. Empty bravado in matters such as these can be disastrous. Well, to be fair to me, it is not to display courage that I dialyze alone. It is only for convenience. Jayaram comes very late sometimes. And he has to leave at 5 in the morning. That sometimes leaves me very little time for dialysis - and sleep. If I start on my own, I can get both - good dialysis and 7 - 8 hours of sleep. Also he does not come on Sundays and I have been wanting to dialyze on Sundays as well. This results in me dialyzing all by myself the entire night.

But with things like these happening, I am not sure I should take such liberties at all.

Sunday, April 24, 2011

The criminal act of not educating patients

Today, I went for the monthly distribution of coupons that subsidize dialysis for people who cannot afford it by the Jain Dialysis Trust. These visits are truly humbling. When I see the work the trust is doing, my head simply bows down before them. It is not easy to save a human life. Yet, these people have saved at least a couple of hundred.

I happened to meet a young guy, on dialysis for a couple of months now. I introduced myself to him and chatted about his background and history with renal disease. I then asked him about a transplant. He said he was not told by his doctor about that option but had heard about it and was exploring it.

I wonder why he wasn't told about that option? Was any education given to him at all about his options? Was PD mentioned? Or was he simply condemned to a life of hemodialysis??

Who will educate patients if it is not for the doctors? Every patient does not have access to the internet. Even those who do may not be proactive enough or feel the necessity to look this up.

A simple talk about the different options doesn't take too long. Is that too much to ask? Tell me, someone please!

Saturday, April 23, 2011

Grim truths that nobody wants to talk about

I met someone today. I'll call him Vishnu. He has been on dialysis for the last seven years. Like most other people, he has spent a fortune on his disease (a few lakhs). His parents died a few years back. He has a brother and a sister. Both don't feel the need to look after him.

Vishnu gets dialysis under the government's Aarogyasri scheme. He was all praise for the quality of dialysis offered at the Aarogyasri unit run by BBraun at Secunderabad's Gandhi Hospital. He said he used to get a lot of chills at other hospitals where he paid and got dialysis but after shifting to Gandhi Hospital, he has not had that problem. All patients get very good quality dialysis, the full four hours.

Vishnu now stays at a private Old Age home even though he is only 40 years old. There he is able to get the salt restricted diet he needs. He pays around Rs. 3,000 per month including food. He is now running out of money as he is unable to work. His Hemoglobin is 6 (a dialysis patient's should be between 11 and 12.5). He used to get Erythropoietin from the Aarogyasri unit. However, it has stopped for the past few weeks. He does not get iron injections, something necessary to get his blood counts up. He used to work as an accountant at an office but had to discontinue due to his health.

Vishnu wonders why he has to pay the full fee for the bus pass when he travels to the dialysis unit when patients having other ailments get a huge discount. Ditto for blood from the Red Cross. Thalassemia patients apparently get blood at highly subsidized rates from the Red Cross. Why can't the Red Cross provide blood at the same rates to hemodialysis patients? Medicines are another pain point. Aarogyasri does not cover the medicines a dialysis patient has to take. They have to buy these medicines from pharmacies and these can be very expensive.

There is absolutely no doubt that the govenrment's Aarogyasri scheme is a revolutionary scheme and that such a scheme exists in today's India mired in corruption scandals of increasing shamelessness is a miracle. Yes, the poor can now get dialysis. But, how will they get to the center? Yes, the government is doing an excellent job in providing dialysis and preventing thousands from dying. Please also do something about their other basic needs. This will not be a huge burden for sure. But it will help people lead lives that bear some semblance to normalcy.

Wednesday, April 20, 2011

Hyderabad Kidney Foundation launches newsletter

The Hyderabad Kidney Foundation, supported by NephroPlus has launched a quarterly newsletter for all patients of kidney disease. Here is the first issue of the newsletter:

Monday, April 18, 2011

Disposing off leftover food

Our family usually has dinner together. All of us work. So, dinner is one meal we usually have together. Many times, there is food that is leftover. When there is a lot, it is fairly simple. Put it in the fridge and if someone wants to have it the next day, heat it and eat it. Otherwise, give it to the servants.

The problem is when there is just a little left. Say, a couple of mouthfuls. What do you do about this?

I found my mother would usually convince us to finish it off or if all of us refused, she would eat it herself. She felt that the hassle of transferring that small quantity to the fridge in a vessel and then storing it there for a whole night simply outweighed the benefits! Many a time she would finish the remaining food even though she was quite full!

I used to criticize my mother asking her why she did not throw that portion? I asked her whether she preferred dumping the food in her stomach rather than the trash?! When she was full, it was always better to throw it rather than eat it, I argued.

Cut to the present.

I am home alone these days. I run into similar situations quite often. The food being cooked is for one person. Very often there is a little bit of food left. I have a few choices - put the remaining food in the fridge, throw it or eat it. Putting it in the fridge seems too much of a hassle. Throwing it - well, honestly, I cannot bring myself to throw the food. I don't know what it is. I just cannot do it. So, most of the time, I end up - well, eating it!

Sunday, April 17, 2011

The state of diagnostics in India

I had to get a blood culture done to check for the possibility of infection due to some symptoms I was having. I went to a very reputed hospital in the city and gave my sample. Along with the sample for the culture, I also gave a sample for C-Reactive Protein (CRP), which is a marker for infection/inflammation.

A couple of days later, the reports arrived. The CRP was normal but they could isolate Eschirichia Coli bacteria in the blood culture. This was strange. Usually if there is infection, the CRP should be high. They suspected that the blood sample drawn for culture might have been contaminated. A repeat sample was drawn for the culture.

Another patient I know was asked to get her blood tested for ANA infection. She gave her sample to one of the best hospitals in the city. The report came out to be positive. For some reason, the doctor wanted to confirm the diagnosis. He had the sample sent to another very good hospital. Negative! 

In my initial years with kidney disease, blood was drawn at the same time and three samples were made and sent to three different labs in the city to check the level of Blood Urea. The reports from the three labs were different and how? One showed 85 mg/dl, another 170 mg/dl and the third 240 mg/dl.

Laboratory investigations form a critical part of medical diagnosis and treatment. How can we be treated based on such flawed systems? Many decisions are taken based on the results of these tests. How can we be confident that we are getting the right treatment? And these incidents were all pertaining to top hospitals in the city. Imagine the state of the smaller diagnostic labs.

Many years back, labs would all be operated manually. There would be rigorous training to become a lab technician. There were hardly one or two labs in a city the size of Hyderabad. Dr. Nandan Singh's labs were very famous in Hyderabad. You probably had a couple more. You went to one of these. 

These days everybody and his uncle is opening a lab. Why? Labs are no longer manual. You have fancy equipment that does most of the tests. All you need to do is to mix some chemicals with the blood and put in a tube that is connected to the equipment and the machine tells you the result. In a matter of seconds. This has made the whole process so easy that anyone by reading the instructions can do this. And that's where the problem lies. Unqualified people have begun doing these investigations. They do not realize the importance of what they are doing. So they take it easy.

The test for Serum Potassium, for example, is a very sensitive test. This test requires you to add a particular reagent to the sample, drop by drop. Adding the reagent suddenly, at one shot, can ruin the sample and you lose the sample forever. Who checks whether this has been done? No supervisor would ever know if it has not been done.The Potassium value reported can be very different in this case. The consequences of this wrong report can potentially be disastrous.

It is very important, therefore for proper regulation of these labs. Stringent quality control, good technicians and strict monitoring are extremely essential. It would be criminal on the part of these hospitals and laboratories to not put these in place.

Saturday, April 16, 2011

Home alone

My parents have gone on a month and a half long trip to the US. My brother Karan is graduating around now and they have gone for that followed by holidays at a few cities in the US and Canada.

So, that leaves me at home, alone. Well, at 25, you might ask, what's the big deal? Well, nothing much, I say. Just that this is the longest I will be staying alone at home. My parents have gone for short 2-3 day trips and recently a week long trip to Dubai. Never this long. So, its just that I am not used to it, that's all.

For instance, I am at home and some bill arrives in the post. For an instant I think my dad will take care of it. Only, I have to take care of it.

When you're home alone, there are some very unexpected things you need to take care of. For instance, yesterday, two servants in my house fought which ended in one of them 'firing' the other. Who was she, I wondered to 'fire' the other. In such matters, logic finds no place. Stranger things have happened!

Staying alone has its share of advantages too. You are generally the king of the castle. You do as you wish. You eat what you want. You come when you wish and you go when you like. Nobody asks you a question. You have no care in the world!

I do wonder though how long this will last? One week? Two? More? I doubt it. Very soon, I am fairly certain, I will miss being in the company of my parents. I will miss things simply getting 'done'. I will miss seeing only the show on the stage without knowing what's happening backstage! I will have to pretty much manage the backstage!

Saturday, April 9, 2011

'Email is not working'

My mother has an ICICI Bank credit card. She was asked by the customer care to send them an email and action, they said, would be taken in 24 hours. So, my mother wanted to send an email. She's had a Rediffmail account for some time now which she uses sporadically. If you send her an email, you need to call her and tell her to check her email.

So, she asked me what the email address for ICICI Bank's customer care was. A google search threw up the answer and I told her. A little while back she came back and said it was asking her to check the address she was using. I re-checked the email address she was using. It seemed to be correct. I asked her whether she had logged into her Rediffmail account. She asked why she needed to do that? I was a little horrified.

I asked her where she was typing the email address I gave her? She said in the line where she types addresses. I quickly figured out that she was typing the email address in the browser URL field!

I then explained to her that she needed to log in to her Rediffmail account to send email!

Wednesday, April 6, 2011

Morning lark or night owl?

Do you like to wake early in the morning or stay up late at night when it comes to study or work?

I used to debate which is better for me right from school days when an exam was coming up. I used to mostly stay up late rather than wake early (unless I had to do both!). The main reason for this was staying up at night was a safer option. Let's say you had some stuff to complete. You estimated it would take two hours to complete. So, you decided to do it in the morning and woke at 5 a.m. because you had to start getting ready at 7 a.m. Now if it got extended for whatever reason, panic would set in and possibly you may not finish what you set out to do at all! On the other hand, if you stayed up late, you had the entire night ahead even if things took longer than you thought they would.

The morning larks however would argue that you would generally finish whatever would otherwise take 2 hours, in an hour. Simply because your mind is totally fresh, completely rested and very efficient. This argument has merits. I have switched to a consultant model with the software company I worked with. So, I work from home, work according to my convenience and bill for the hours put in and the work done. I find that I am at my best in the morning. I am usually done with my dialysis around 5 a.m. and then have about an hour to two hours to finish off some work (unless I feel like and am able to go back to sleep). I am able to complete really complicated stuff very quickly.

The Hindu scriptures extol the virtues of the morning too. Most scholars arise early in the morning and practice their shlokas at that time. I guess, for work that involves the mind, no time is as good as the morning. Especially when there is no deadline involved.

Saturday, April 2, 2011

Ultrasound scans for people on dialysis

I was in the East Marredpally unit of NephroPlus a couple of days back. A patient's son wanted to speak to me. He said his father was advised to undergo a KUB Ultrasound Scan and they went to Apollo Hospital in Secunderabad. There, the assisting nurse asked his father, the patient, to drink a lot of water and make sure his bladder was full. Only then could they do the scan.

The family was in a dilemma. They had, all along, been advised to restrict his fluids to a liter per day. Now, here was a nurse asking him to drink a lot more. They explained this to the nurse. The nurse wouldn't listen. She insisted that the scan couldn't be done without a full bladder. The family relented. The patient was made to drink about three liters of water in a span of about an hour. The scan was done.

By next morning, the patient was overloaded with fluid. His feet were swollen and he could barely walk.

This is so outrageous!

First, the bladder wouldn't have been full even if the patient would have had 100 liters of water. Simply because his kidneys weren't functioning. Second, in all patients with kidney failure ultrasound scans are routinely done with empty bladders. There is simply no choice. This shows the complete ignorance and apathy of the staff at the hospital. Again, it is not only this hospital. I have myself been asked several times to drink a lot of water when I went in for an ultrasound scan. I simply tell them my bladder is already full. The radiologist usually understands. It is the staff outside that does not.

This is a very basic facet of kidney disease that should be taught to anyone who is likely to deal with these kinds of cases. Ultrasound scanning staff to start with. Nephrologists of each hospital should probably take the lead on this and instruct the departments to make this a part of the rules/handbook/training or whatever such mechanism might be available.

If the patient is on dialysis, there is NO NEED FOR A FULL BLADDER. DO NOT DRINK ANY WATER AT ALL. If the team there insists, refuse to do the scan and ask them to speak to the nephrologist.