Lack of Patient Advocacy in Renal Disease Care

Since my kidneys did not respond after resting for three months, the nephrologist and clinic director have moved my medical diagnosis to End Stage Renal Disease. I have had a temporary port for 7 months, so on the 14th of March will have the 1st of two surgeries. I have only one vein that the vascular surgeon can use, but after he puts in the catheter into the vein for maturity of the fistula then he will have to go back in to raise the vein, I am somewhat nervous about what he plans to do. But I am calm and relaxed with him and his knowledge of what he is planning to do. Regarding the end stage renal disease, I seem healthy and I am at peace with what is happening but I continually ask questions especially when a nurse comes to me with a needle and syringe in hand telling me after I see it that my hemoglobin is low so they are putting this syringe into my port to get the iron into my blood stream. Bit before they did I had been getting a headache. I asked and the nurse said it could be coming from the iron shot so they slowed down the medication into my blood stream and I haven't had a headache that wasn't unexplainable. But we as individuals have to be OUR OWN Advocates for there is no one else to help us.

I get you. After my diagnosis and my treatment plan it felt like I’m on my own. My advice to you is to ask your doctor or nurse to be more informative, and to explain to you what to except

You're so right.. I think it really depends on the clinic and its motivation to make the process more comfortable. It sucks that it's not expected in all clinics.