Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
The NephroPlus founding team was to be honoured with the "Dynamic Indian of the Millenium" Award by K. G. Foundation Coimbatore! So, the three of us, Vikram, Sandeep and I planned to go to Coimbatore for the event on the 5th of April. We also thought a celebratory break of a day would be just right in the cool climes of Ooty after the event!
Ever had a song stick in your head with no hope of letting it go for many hours? Well, I had that happen to me many-a-time and a few days before the event, the song from the movie Padosan, Bhai baddur was stuck in my head except that my head, all excited about the trip, conveniently replaced the first two words with Coimbattooor-Coimbattooor! Here's the original for those inclined:
Dynamic Indian of the Millenium
The K. G. Foundation awards distinguished Indians who have made some impact on society every year with these awards and we were quite surprised that we were picked for the award this year! The foundation is headed by the dynamic Dr. G. Bhaktavatsalam, an extremely active doctor, who heads the K. G. Hospital of Coimbatore and is a Padma Shri himself. The organisation of the awards event was really amazing. All the finer details were taken care of. The award itself was a plaque, a shawl and a memento. After the awards were given to us, they were collected back and were sent to our car. By the next day, an album with pictures from the event that featured each of us separately was delivered to us! Truly remarkable!
The evening saw us getting massages at the hotel spa which relaxed and rejuvenated us. I went to the local market and bought some passion fruit and mangoes for my parents. We had dinner and turned in. We were back home the next afternoon.
Though this was a small trip, it served the purpose - that of a short break and an opportunity to recharge our batteries. In the modern day and age, where you get so tied down with your daily work, even a short trip like this can really help. Especially with work like ours in NephroPlus, where every day can bring on a new challenge, where every decision we take is critical and affects a lot of people, it is essential for our minds to be refreshed once in a way.
This morning, as I browsed through my Facebook wall, I was alarmed to see a friend's post that he was trying to enjoy the last few days of his life! This guy is on dialysis and has been on dialysis for a year. I was wondering what could have happened that he thought these were the last few days of his life?
I called him immediately and realised that he was thoroughly depressed. I tried to cheer him up and realised that many people on dialysis are very depressed.
Unfortunately, in a country like India, where there are hardly a thousand nephrologists for a population of more than a billion, doctors do not have enough time to spend with their patients and give them 'all-round' care. A dialysis patient has multiple problems - the basic issues around dialysis itself, diet problems, co-morbidities, psychological issues. There is just not enough bandwidth for a doctor to attempt to address all these problems!
The patients themselves find it hard to grapple with a multitude of problems. Add to that the horrible problem of paying for treating all this.
"Its all in the mind", goes the adage. Now, there's proof to back this. A paper in Nephrology, Dialysis, Transplantation states, "scores on the emotional components of (Quality of Life) questionnaires are in fact strong predictors of patient outcome." A study quoted in this paper actually found that "patients with scores of 0–37 have twice the relative risk of death than those patients with scores of 51 or higher".
In India, what can we do to address this very significant cause of patient mortality among the dialysis population?
First, we need to acknowledge that this problem exists. We need to at least start tracking depression among our patients. It is not very difficult. Standard questionnaires are available. A beginning can be made by administering this questionnaire to our patients and then figuring out the magnitude of the problem at hand in our country.
Subsequently, steps can be taken as arranging support systems for those affected. We, as a country, may not have the resources to treat every patient who is depressed. Let us at least make a beginning. Rome was not built in a day. Treating dialysis patients is honestly, a more arduous task.
The medical community owes this to the patients. Dr. Victor Gura said, in response to a question on how working on the WAK helps him:
"Why would somebody go to medical school for any reason except because you want to alleviate pain and suffering or save lives. If you go to medical school that's what you want. And I would be basically fulfilling my endeavors and my hopes of becoming a physician. Alleviate suffering, make life better and hopefully save a few lives."
I have been on dialysis for almost eighteen years now. I lead an almost normal life. I swim every morning. I work full time. I travel regularly. If you asked me what the secret ingredient in this recipe is, I would unhesitatingly say, "hours, hours, hours". The number of hours you spend on the machine, in my mind, is the most important factor.
I could not make that point as forcefully as I would have liked to in the discussion. In any panel discussion, even without Arnab Goswami as the moderator, there is a limited amount of time that each panelist gets to make his or her point. With Arnab, you have a second or two before he would interject and then make your point for you even if it is not really your point!
But, I digress.
There are two things dialysis removes - fluid and toxins. You can use a better dialyzer to remove toxins in a better manner. However, for fluid removal, even the best dialyzer in the world is restricted by the physiology of the body. The human body can only handle about 400 ml/hour without any complications. Stretch this limit and you are setting yourself up for a variety of problems like cramps, low blood pressure and some heart issues like Myocardial Stunning.
More hours on the machine also means you have less time between treatments. This means lower inter-dialytic weight gains. The normal human body has about 5-6 liters of blood. When someone consumes about 2 liters of fluid without removing it, it means almost 40% extra fluid for the heart to pump. This puts a lot of load on the heart causing it to expand (Left Ventricular Hypertrophy) and eventually fail. That is why most dialysis patients die of Cardiac issues and many of them die during the 'long-gap' between sessions. For patients on thrice a week dialysis, this typically is the 'killer weekend' - the Sunday-Monday gap or the Saturday-Sunday gap.
So, how much dialysis should one get?
I would say, "however much you can practically get!" I get about seven hours each night, six nights a week. That's at least 42 hours per week! Compare this to those who get five hours, twice weekly or four hours, thrice weekly. I get a lot more. Yes, there are a large number of people who have survived for a lot longer than I have on these modalities. But we must not get swayed by a few odd cases. The vast majority of patients who get low hours per week have poor survivals and quality of life.
Even when it comes to toxins, middle molecules can only be removed by more hours on the machine. These are the silent killers when it comes to long term dialysis.
I strongly believe a lot more effort needs to be made by the Indian dialysis community in getting patients more hours on the machine. Yes, patients here have financial constraints. Yes, we have a resource crunch. But if we honestly ask ourselves the question, "Are we giving optimal (not just adequate) dialysis to every patient who can afford it?", I am sure the answer is a big "No".
Are we giving enough hours to patients covered by private insurance? No!
Are we giving enough hours to patients covered by Government reimbursement schemes? No!
Are we giving enough hours to patients to patients who can afford them? No!
Where is the financial constraint for patients here?
I rest my case.
- 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
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!