Being diagnosed with kidney failure can be life-altering. All of us live with the thinking that ‘these things don’t happen to us’. Though we don’t say it consciously, deep within we are all somehow certain that such diseases will not happen to us. When lightning strikes however, life can come to a standstill. Most of us are in denial for months and at times, years. We refuse to accept that this has happened to us.
Slowly, after a number of repeated blood tests, the reality begins to hit us that ‘yes, I have kidney failure.’
Life with kidney failure need not be bad at all. It is different for sure. But by no means does it need to be incomplete or compromised. There are several people who are leading normal lives despite being on dialysis.
There are some simple things you can do to be better prepared for dealing with kidney failure. Unfortunately many people are diagnosed just when they are on the verge of needing dialysis. Whatever be the case, here are a few things that you should do when you’ve been diagnosed:
1. Read up on all the options for Renal Replacement Therapy (RRT):
Let’s face it. Doctors in India have little time. They have to deal with a large number of patients and to expect them to give you individualised care and attention is to ask for too much. It is important for you to read up as much as you can on all the options for RRT - a means to replace the function of your own kidneys (which have decided to kick the bucket for whatever reason). Don’t let anyone else decide for you. There are multiple options for RRT: Kidney Transplant, Comprehensive Conservative Care, Peritoneal Dialysis and Hemodialysis. Each of these has several sub-types. This link could be a good starting point.
2. Get vaccinated for Hepatitis B:
Hepatitis B is a dangerous disease. It is infectious. It is not life-threatening these days but it does complicate treatment a hell of a lot. When there is a vaccine available to prevent this, isn’t it a no-brainer to take it? Yet, many people get onto dialysis without getting vaccinated for this Hepatitis B. On dialysis, your chances of contracting the virus are much higher due to the increased exposure of blood, hospital visits, blood transfusions and so on. So, please talk to your doctor and start your vaccination schedule for Hepatitis B. (A new blog post is coming up shortly on the specifics of Hepatitis B vaccination.) Remember, those with CKD / ESKD need to take twice the regular dose - 2 ml of the vaccine instead of 1 ml each time.
3. Register for a cadaver transplant:
India has a cadaver transplant program that is slowly picking up. You need to register in the list for your city. Talk to your nephrologist and find out what you need to do to get onto the list. Even if you don’t feel like a transplant now, trust me on this, get on the list. Your turn could take years to come and by then, who knows, you might’ve changed your mind. If you have a willing related donor (immediate relative - parents, children, siblings or spouse) then of course, you don’t need to do this.
4. Get your RRT access:
If you are not getting a transplant soon enough, then you need to decide on your preferred dialysis modality if you are deciding not to go for Comprehensive Conservative Care. Depending on which modality you pick, you need to get an access. If it’s Peritoneal Dialysis (any of the sub-types) you need a small surgery that will get you a catheter in your stomach. If you pick Hemodialysis (again, any of the sub-types), you should definitely opt for an Arteriovenous Fistula (AVF) for which a small surgery will be required. It is important to get your access as early as possible even if you don’t need dialysis immediately because accesses take time to mature and you can use them for a long period of time after they’re created. You don’t want to end up in emergency dialysis with a temporary access which is far from ideal and prone to infections.
Remember, life without working kidneys is not a death sentence. At worst, it is a different life. People work full time, exercise, travel, trek and do almost everything that a healthy person can do. What is needed is careful planning, awareness and a proactive approach to your health.