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You have no choice but to be aware

Posted Sep 12 2013 9:20pm
For people that have kidney disease, in fact, any chronic condition, it is very important to be aware of the condition, the options available and the pros and cons of each. I see so many people on dialysis every day. Unfortunately, many of them rely on others to make their decisions. Some rely on their family, some rely on doctors, some rely on other patients with similar conditions. This is not good at all.

I would strongly advise you to read up as much as you can about your condition, become a member of an online group of people that has a similar condition and ask questions when you visit your doctor.



The internet is a great source of information. You should regularly look up your condition and keep abreast of what's happening in that field. Google Alerts are a great way to get a daily digest of the latest in any field right into your inbox! I have a Google alert set up on "dialysis" and "Atypical Hemolytic Uremic Syndrome" apart from other things. That way I am certain that the most important news on these subjects will always reach me in time. I also follow some nephrology blogs like those of Dr. Ajay Singh , Nephron Power and Renal Fellow Network  among others. You should get a good RSS reader account like Feedly and subscribe to these blogs. This is a very easy way to keep up with the latest.

I have learnt some really important stuff simply by being part of online support groups. The simple fact of having dozens of others with similar problems like you can be heartening. Whenever I have a problem related to my home hemodialysis, I post it online and within hours, I get replies with how others have handled the same situation. Contrast this with having to wait for an appointment with my nephrologist and waiting to get his advice. Of course, you need to be judicious when you decide what questions are meant for a support group and what questions are only to be answered by a nephrologist. For example, a support group cannot help you decide which Blood Pressure medication you must take. However, a support group will definitely help you to feel better when you have just pulled off too much fluid on dialysis. And remember to contribute back to the group when you can! These days, there are many places where you have groups. Facebook also has groups for most things.

Some of us are lucky to have doctors who look beyond commercial factors while recommending treatments. Not all of us are that lucky. If you have a chronic condition, chances are that at some point in your life, you will run into doctors who ONLY look at the financial benefit they are getting while recommending something to you. Yes, the world is filled with cunts, right? But it is difficult to tell one from the other especially if your interaction is short. So, remember to ask questions.

"You need to get a fistula made for dialysis."

"Why do I need dialysis? What are the options within dialysis? What is the chance of success of a fistula surgery? Anything we can do to improve that? Who is the best fistula surgeon in town?"

You get the picture?

Ask questions. Understand your options. Understand the pros and the cons for each. Then make the decision along with your doctor. Never let the doctor decide everything. Remember, it is your life. You are the only one that will bear the consequences. Is it too much to expect that you be a part of the decisions?!

This is where education comes in as well. If you are well read about your condition and know the options, no one can take you for a ride. If you know nothing about it and rely completely on others, then no one can help you. The choice, really, is entirely yours.




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