Are people communicating with their treatment team enough?

[EchoMax1012]

I am struck by the amount of posts on this website which are asking people to give feedback about various things they can take to reduce various symptoms. I am wondering whether this means that people do not feel confident to ask these questions to the medical team members who are assigned to their care, and if so, why not? In general, I would think that the team which is working with you would know you, and your health idiosyncrasies, and what is best for CKD the best. If you get some suggestions from this website about how to manage CKD, do you then go back to your team to ask them what their thoughts are? Just curious...

[Hidden]

It's called being proactive. I was diagnosed with CKD in late June of 2017. From then to now I constantly do research on everything related to CKD as well as other health issues I have. Reading other posts and offering advice, or paying it forward, is one of the ways I share what I've learned. That knowledge allows me to ask informed and intelligent questions of any doctors on my Care Team. I have found over the years, but especially over the last 3 years that doctors shouldn't make the decision about what happens regarding my healthcare. That decision should be mine. The more I know, the better I can use my appointment time wisely when I meet with my physicians. Understanding that their appointment time is limited and I have to make the most of it, I do.

Again, reading what other people are dealing with, doing research, and developing questions for me to ask makes each appointment or portal contact the best use of not just my time but also the professionals on my Care Team.

[EchoMax1012 in reply to Hidden]

Thank you. I just wanted to make sure that people are keeping their care team in the loop when changes are made.

[Hidden in reply to EchoMax1012]

Now I'm curious. You gave the same response to both OC and me and I'd like to know what/why your interest is?

Are you someone with CKD?

[EchoMax1012 in reply to Hidden]

I donated in 2016. My interest is solely in people managing their health conditions in a manner which will yield the best results. If, as a patient, you do the research and you talk to your caregivers, and go from there, that is great. If, on the other hand, you seek input from people who are strangers and do not do your due diligence, or consult with your team, I think there are some risks.

[Marvin8 in reply to EchoMax1012]

What exactly did you donate in 2016....a kidney or something else?

[EchoMax1012 in reply to Marvin8]

Kidney, non-directed.

[Marvin8 in reply to EchoMax1012]

You are a hero, kind sir.

[Hidden in reply to EchoMax1012]

And if someone wasn't keeping their Care Team informed? What would you say then?

[EchoMax1012 in reply to Hidden]

I would be worried.

[orangecity41 NKF Ambassador]

If am going to make any changes to my diet or want to add a supplement I always check with my Primary Doctor. As for information on CKD, I am not able to get a referral, on Medicare, to a Nephrologist until have reached level 4 eGFR. I count on my Primary Doctor for information but it is limited. I do share information with my other doctors also, as it may be applicable to other conditions. Communication is important . Sometimes it is more one way than the other.

[EchoMax1012 in reply to orangecity41]

Thank you. I just wanted to make sure that your care team is kept in the loop whenever changes are being considered, or made.

[orangecity41 NKF Ambassador in reply to EchoMax1012]

Thanks for your concern.

[Jayhawker]

Like Mr Kidney, I, too, am curious as to why you’re asking this question... Please share more.

Jayhawker

[lowraind]

There are primary care physicians who are not well informed enough about ckd to help someone with ckd. There are nephrologists who continue to insist that nothing can be done to help ourselves. There is much information to the contrary. I have used that information and, like many others have seen improvement. Who am I going to believe?

[orangecity41 NKF Ambassador in reply to lowraind]

Agree with you completely Lowraind, on some physicians not being well informed on CKD, and being valuable information available to us.

[Bet117 NKF Ambassador in reply to orangecity41]

And support!

[curiousmind2019]

When it comes to certain day-to-day choices and pain, the nurses and nephrologist don't always know what it is like. For example, I am on PD dialysis, the nurse keeps asking me to drain drain drain, when I am hurting like crazy. The nurse just tells me, look 2L went in, at least 2L should come out, keep draining.

Before dialysis, there were so many questions that I wish I knew to ask my nephrologist. It's like you don't know what you don't know. Having this forum and comments from other going through the same situation is invaluable.

[Jayhawker in reply to curiousmind2019]

Exactly! Very well stated!!!

Jayhawker

[brynat2]

I find it helpful just getting others advice, they may have already experienced certain symptoms and knows what works for them. It's really just sharing information that could possible benefit someone.

[Bet117 NKF Ambassador]

Echo Max,

Thanks for your concern. The purpose of the forum is a safe place for folks to discuss issues, concerns and find support. So you will see many discussions will arise.

Community guidelines, Ambassadors and Administrators suggest that first line communication must be with with the patient's medical team as no one person or treatment is ideal for everyone.

Thanks for taking the time to inquire and share your great story! You a really are a hero for giving another life/ quality life!

Do share more of your journey as often words yield hope.

[rabbit01]

To be honest I get no more than 10 minutes of time with my nephrologist every 4 months. She never takes time to explain anything. During the consultation she speaks faster and faster to the point where it is almost comical if the subject matter was not so serious. I have learnt more about my condition from this forum and Google than I have ever been told by my medical team.