Shock diagnosis

Hi

I have only just found out I was categoriesed as a stage 3 because I had a paid for medical as part of an assessment. No one had ever told me, I have never been given any advice, medication or tests regarding this diagnosis. I am a type 1 diabetic and feel that at my gp practice in Risca I am not being cared for. Just because it's common for diabetics to develop CKD doesn't mean we shouldn't receive a diagnosis of it or have access to the same care.

Can anyone tell me what is the usual care plan for managing this condition.

Thanks

1 Reply

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  • Hi and Welcome to the club. I'd like to be able to tell you that your case is an exception but that doesn't seem to be the case. I found out a few months ago that I was Stage 3A. I've read here that there are many, many others that weren't told until they were in advanced stages of CKD. I have been a Type II Diabetic for over 17 years.

    There are lots of things for you to do now that you know that can help slow down the progression to more advanced stages. I haven't learned of any official type of care plan anywhere but there are steps for you to take to put your own care plan together.

    If you aren't satisfied with your primary care physician, find another one who is willing to work with you and other members of your care team. Find a nephrologist also willing to be open and offer you assistance in managing your CKD. If you can find a Renal Dietitian to help you develop a meal plan to help you slow down the progression you will be able to take an active role in your health management. That comes to you. Learn as much as you can about CKD and how any other health issues you have and how they interact with each other. This should also include any medications you have for those issues. I found out that a number of medications I was taking were not the best choice for CKD.

    The more you learn the better you will be at directing the care team you put together that will guide you to the best-managed care you can have. You'll be able to ask better questions and understand the options they offer. You are the one to make any decisions about your health and life. The physicians are there to help you, not to tell you what to do.

    You have also done a major step by finding this site and sharing. There are lots of great people here that can share their stories and expertise to help you learn and develop your personal path to a long and active lifestyle. Good luck to you and come back here often to share your insights.

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