On the internet, when you browse forums related to dialysis, you see a lot of emphasis on trying to increase frequency and duration of dialysis. When you talk to many patients in India, you realize that the issues are very different. Considering that a majority of dialysis patients do not have access to dialysis treatments, you begin to realize the seriousness of the problem.
Very few people can afford to pay close to Rs. 20,000 for medical treatment. What generally happens is if you are lucky enough to be able to get diagnosed in the first place (yes, a large number of people don't even get diagnosed, they simply die of some 'unknown illness'), you start getting dialysis. You soon realize that this is eating away the entire family's resources. The rest of the family also sees this. The patient starts feeling guilty of this. What will happen to the rest of the family? And it is not like a few dialysis sessions would cure the patient. This punishing disease can only be managed, not cured!
The patient and the family often decide that they cannot continue this forever. They are only being practical. The dialysis treatment is stopped. In a few days to a few weeks, the patient passes.
For those that can afford the treatment, everyday problems like paying for the expensive erythropoietin injections, dealing with the co-morbidities, managing doctor visits, the inevitable hospitalizations once in a way take up so much of the patient's and the family's time and energy, that there is barely any bandwidth for other things.
When I talk to people about doing daily dialysis or nocturnal dialysis, it is as if I am talking nonsense. These things for many are things they don't even want to begin considering. It is too far fetched and impractical. Their immediate problems are more existential, much more fundamental.
It is a pity really. When I get on to dialysis sometimes, in the comfort of my home, I feel so grateful (not to God), just generally grateful that I could get access to this wonderful modality that enables me to lead a close-to-normal life, I feel simultaneously sad that more people are not able to do this. When there is something that can take away a lot of the pain and frustration that dialysis is generally associated with, it is really unfortunate that more people cannot try it.
It is not due to money alone. I know many people who can easily afford the expenses. My monthly medical expenses come to the same as someone who is on thrice weekly dialysis! And I am getting about 40+ hours compared to their 12 hours. It has more to do with the leap of faith in dialyzing at home. For those who have the gumption to do this, often, financial constraints come in the way.
Very few people can afford to pay close to Rs. 20,000 for medical treatment. What generally happens is if you are lucky enough to be able to get diagnosed in the first place (yes, a large number of people don't even get diagnosed, they simply die of some 'unknown illness'), you start getting dialysis. You soon realize that this is eating away the entire family's resources. The rest of the family also sees this. The patient starts feeling guilty of this. What will happen to the rest of the family? And it is not like a few dialysis sessions would cure the patient. This punishing disease can only be managed, not cured!
The patient and the family often decide that they cannot continue this forever. They are only being practical. The dialysis treatment is stopped. In a few days to a few weeks, the patient passes.
For those that can afford the treatment, everyday problems like paying for the expensive erythropoietin injections, dealing with the co-morbidities, managing doctor visits, the inevitable hospitalizations once in a way take up so much of the patient's and the family's time and energy, that there is barely any bandwidth for other things.
When I talk to people about doing daily dialysis or nocturnal dialysis, it is as if I am talking nonsense. These things for many are things they don't even want to begin considering. It is too far fetched and impractical. Their immediate problems are more existential, much more fundamental.
It is a pity really. When I get on to dialysis sometimes, in the comfort of my home, I feel so grateful (not to God), just generally grateful that I could get access to this wonderful modality that enables me to lead a close-to-normal life, I feel simultaneously sad that more people are not able to do this. When there is something that can take away a lot of the pain and frustration that dialysis is generally associated with, it is really unfortunate that more people cannot try it.
It is not due to money alone. I know many people who can easily afford the expenses. My monthly medical expenses come to the same as someone who is on thrice weekly dialysis! And I am getting about 40+ hours compared to their 12 hours. It has more to do with the leap of faith in dialyzing at home. For those who have the gumption to do this, often, financial constraints come in the way.
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Suman Sharma