What do you wish that someone would have told you when you were first diagnosed with CKD?
I wish I had been told that I needed to watch what I eat and drink at the beginning of this journey. I wasn't told that taking care of this at the present moment would slow down damage to the kidneys. It was over a year later that this was brought up. At this point, my doctor did help me find a dietitian. She was able to help me with planning meals and snacks that I would want to eat.
Is there something your healthcare team left out that you wish they had told you upfront?
For me it was their demure and behaviour it wasnāt comforting at all, I was numb to it all and the lack of information they gave me was even harder as I had to manage and research and ask questions. Definitely think I would have been better with a more comforting approach and more explain ing about ckd and what I would have been facing.
Hello
, I absolutely agree with you. It does feel like they have a lackadaisical approach to CKD. So much is left out and not told to you at the moment. I had no idea what to do when I got a diagnosis. Thanks for sharing. , yes he does along with diabetes. He works very closely with his healthcare team, but he still wants to eat what he wants. How are you doing today? Diane (Team Member) , yes he has chronic kidney disease and type 2 diabetes that he takes insulin for. It's hard for me to get him to stay on track with diet. I gave up salt, he hasn't. Diane (Team Member)
All I was told by the Nephrologist is to avoid salt. She did not mention amounts of protein, phosphorus or sodium limit that I should adhere to. No mention of finding a Renal Dietician. Now I call my new Nephrologist if I need to take an over the counter allergy medicine and others. I found several excellent renal care and diet books on Amazon and am educating myself.
Hello,
Thank you so much for replying, and happy to have you as part of this community. My father also takes 4 100mg of Gabapentin a day and 4 blood pressure medications. He is just hardheaded. He is 90 today. I guess he has lived that long, he is doing something right. Let us know how your doctor's appointment goes. Diane (Team Member) 
Hi..Gabby from Maine here..
Unfortunately, I truly believe WE need to do a great deal on the researching end.. I have been finding that some of these āSpecialistsā,
think of themselves to be TOO SPECIAL!!
Not all!!
I having been realizing with any medical issue(es), we need to be our own advocates, and be prepared before an appointment, so we can ask intelligent questions..
However, I also believe, that there CERTAIN specific details,
a doctor, a specialist particularly, ought to be educating his patient about..In our case, initially LOWER your dal intake, that sort of thing..
Letting us, the CKD patient know, depending on what stage that are in, what to avoid, what to be eating drinking etc..
If they arenāt, then they are being negligent tegarding their patientās care.
Just Sayinā..
Stay Well..
Gabby
Hello
, I wasn't told anything either at the beginning of this journey. Good for you for being your own best advocate. We have to educate ourselves. Thanks for sharing.
