Dialysis is a process that requires the blood to be drawn out taken to an external filter and injected back into our system. This machine balances the electrolytes in the blood as well as removes the excess fluids retained in the blood stream due to inability to pass urine
Everytime one takes dialysis it is a different experience. In fact, the pain is different every time one takes it. Hence it is an adventure every time one has to go through it. The typical problems that arise are cramps, variations in blood pressure which can be very violent sometimes, rigors, and whole lot of other complications.
That is during the dialysis. Other than this the patients have very subnormal levels of haemoglobin, calcium, and other vital parameters thus making the body very debilitated.
I will try to explain each of the issues faced by patients in detail.
Low blood count: This leads to lot of weakness and is a major impediment in living a normal life. Our simple everyday tasks like climbing staircases, travelling, and other actions oriented activities are difficult to achieve. Any exertion above a certain threshold results in fatigue, breathlessness and the like. This irregularity is managed by giving injections of iron supplements and the human hormone erythropoetein EPO.
Low calcium count: We are hardly aware that the calcium count is also determined by the efficacy of our kidneys. When the kidneys dont function, the calcium count is low and this can result in aching limbs, incidence of cramps, and again fatigue. This is also a contributor to decreased capacity of the patient in conducting action oriented activities. This also leads to a calcium phosphorous imbalance in the body. This is managed by treating the patient with calcium acetate tablets as well as alphacalcidol which is a direct source of calcium to the body.
Diet: One has to maintain a diet to ensure the exact amount of salt required by the body and other restrictions to ensure that the electrolytes dont go out of hand.
This process is required to be undergone regularly for the rest of the life. Hence the following issues arise.
The costs being recurring are range from around Rs.600 per cycle (inclusive of injections) to Rs.3000 per cycle depending on which class of hospital one is taking the treatment.
For a middle income group person these costs become quite a burden and hence there is a lot of demand for low cost dialysis centres.
Transplant: The alternative to dialysis
In India and in most countries transplant donors necessarily need to be a blood relative of the patient or a spouse. The intention of having this rule is to do away with the rampant organ trade whereby organs were purchased from needy people and used by the ones who could afford to pay. The other option is to go in for a cadaver donation. A person who is brain dead can donate organs as they are still functioning. However, there is a huge and widening gap between demand and supply of cadaver organs.
What is required is a concerted effort to create awareness about cadaver donation as a concept and some kind of government intervention to promote the same. An advertising campaign or a celebrity testimonial could go a long way. Though a lot of awareness has been created about eye donation, not much has been done about donation of other organs, which is a pity.
In a way it suits most of the decision makers. Doctors are happy that they have a continuous flow of patients to the dialysis clinics thus ensuring their bread and butter. The dialysis clinics and hospitals are also happy that the investment that they have made for the machines would be utilised optimally. The real loser is the patient. What is required is patients to come together and unite to break this ice that has been formed and create a way for themselves.
Dialysis and Infection
Dialysis being a process involving the blood of a patient, it is but obvious that the patient undergoing dialysis is prone to infection. This can be avoided by having good systems at the dialysis centre. This includes steps like using gloves, separate gloves for infected patients and uninfected ones, having separate areas to wash the blood soaked equipment for infected and non infected patients and so on and so forth. The incidence of hepatitis C infection is most common. Though centres have separate machines for Hepatitis C positive patients most low cost centres do not have enough resources to handle patients separately. In addition to this the basic precautions are not followed. typically these precautions would include disinfecting hands after treating a positive patient etc. The doctors in charge of the clinic talk a lot about precautions, but then they dont have to suffer. So there is a huge gap between the talk and walking it. In my opinion the doctors have to take responsibility and be held accountable for any negative patient testing positive. Unless this happens, no concrete steps will be taken to avoid transmission of dangerous viruses and as always patients will continue to be the only sufferers.
Hepatitis C is an infection that occurs due to contamination in blood. Hence there is little likelihood of it getting transmitted through anywhere but the dialysis centre. Hence a negative patient normally tests positive only due to negligence of hospital / clinic staff which cant be pinpointed after being tested positive. Once this happens, the patient is asked to be isolated and made to use a separate machine for positive patients. If a slot on the said machine is not available, he / she is asked to look for another dialysis centre......... ironically to stem the transmission of the virus. This is mere hogwash as the real steps should have been taken to avoid transmission in the first place and not after a patient has tested positive. These steps are knee jerk and are aimed at just projecting that something is being done about not transmitting dangerous viruses. What would make sense is for the nephrologists to preside over and establish systems that ensure that viruses are not transmitted. However, what eventually happens is that doctors preside over the mess !!!
These are just small instances of how the patient has to undergo hardships while most doctors,(there are some very nice and efficient doctors as well) , hospital staff and all others make merry at the expense of the gullible patient.
As a result the whole process of dialysis (specially in India) is a huge adventure as far as the patient is concerned. The constraints outnumber the positives and hence everytime is a new experience, a scary experience and a very emotionally draining experience for most patients. We talk about life expectancy of more than 20 years on dialysis abroad. However, in India these 20 year cases are rare and can be counted on our fingers. The life expectancy of most patients in India on dialysis is about 8 - 10 years. The reasons for the same are not really so difficult to infer.