Hello all,
Newly diagnosed with CKD Stage 3A. Sure wasn't expecting that with a routine yearly exam......Yikes. I've been researching alot, but my doctor says "Oh, we're probably all walking around with it" He doesn't seem concerned in the least. Has not suggested a CT of the kidney, special diet, anything. Does this seem strange to anyone else?
Hello! I currently have stage 4 CKD and I'm prepping for dialysis and transplant. Kidney disease is often called the "silent killer" because most people don't know that they have CKD until they are on the verge of renal failure. The key to this disease is preventative care! Do your own research (which i see you have) and ask to see a nephrologist as well as a renal dietitian. If they refuse than I would recommend getting a new doctor since they do not have your best interests in mind. To say that it is strange is an understatement, considering it is now irreversible. I would recommend Devita.com for renal recipes if you are interested in starting on your own!
I've personally been very lucky with my medical team. It's very important to strongly advocate for yourself and get this under control and managed; without a good support system it makes living with CKD much more difficult since nobody is willing to treat complications that may arise. Medication will become necessary also.
I wish you luck and if you have any questions feel free to ask! I had stage 3 CKD for 10 years (I'm 20 so half of my life) and have managed to prolong my kidney by 6 years and counting due to preventative measures that were put in place early on. I wish you Well and welcome to the forum!
Ladybug, THANK you so much for the support. Just reading it allowed me to take my first deep breath. I have already connected with Devita and even found a Kidney Smart class in my area for next week for information and hopefully dietary info. Unfortunately, my entire life I've been a 2-3 day coke drinker (having a little guilt over that). Again, thanks for the comments and certainly wish you luck with the next steps in your journey. Good thoughts and prayers your way. I call my oldest grandaughter Ladybug.....youre gonna do great 💜💜
Hi JuJu58
Great you are being proactive for your diagnosis at stage 3. I was diagnosed stage 3 over a year ago and Primary Doctor recommended the renal diet. I too took Davita class 101 and it was great introduction to the disease. The recipes on Davita also helpful.
Good luck on our journeys.
Thank you for the support. It's been 3 weeks and I'm still in shock but I'm ready for "New beginnings" .Thanks for reaching out. Take care, I'm sure I'll be back with more questions. Is there a book "The Renal Diet"?
Hi JuJu58
There are many books on renal diet. I found one by author Mathea Ford to be helpful. The renal diet I was given by PD is from NIH, do not know if more current one. It is 7 pages and basically tells you what types and quantities you can have of meats or substitute, vegetables, fruits, grains and dairy. It is to limit phosphorus and sodium and potassium. It is lacking in recipes, menu etc. Davita also has recipes and menus for CKD non dialysis
Hello and welcome! I'm sorry you had to receive that shock and that it seems your care provider is a bit blasé about it. You are your own best advocate! Ask for a referral to a nephrologist who can see you (I'm same stage and go every 6 months) and monitor your blood pressure and your lab work. They will be the best to inform you of what has caused the decline of your function (sometimes a genetic disease) and determine what diagnostic imaging is right for you. Great idea heading to DaVita and using them as a resource through this time where you will no doubt learn a lot about how to help manage your condition through healthy choices. We're always here to bounce your ideas off of! Take care!
Thanks so much. You guys are the best. Yes, I will ask for referral again, he said typically you don't do that until stage 4, personally I dont feel comfortable waiting. I have a Healthy Kidney class scheduled for next week I found through DiVita . But, heck in the meantime not sure what to even eat for breakfast. Lol Thanks again, wishing the best for you!!
My husband has IGA neuropathy. He was dx is March with stage 3. He was sent to a Nephrologist. He was stage 4 before he saw the Nephrologist and now we are going through the process of getting him on the transplant list. Doc has also prepped us for Diaylsis. His functioned continues to drop even with a very strict diet that he adbires to with no deviation. My point is you never know how long the function will last. Without a biopsy you won't know if it's from an aggressive auto immune disease or one of the more common causes.
I was stage 3 25 years ago and, like you, my doctor was not concerned. Now I have ESRD but it took me 25 years to reach that stage. I changed my diet and read books. Background reading is good but be aware that each case is different. Find a nephrologist and a new primary care doctor. If possible, work with a dietitian. Watch your diet very carefully and exercise regularly. By your actions, you can slow the progression of the disease.
I suppose all care providers are different. When I saw my general practitioner for what turned out to be out of control high blood pressure, he put me on some medication for that. When he asked about my family history and found that it was likely being caused by Polycystic Kidney Disease, he referred me to a nephrologist right away, not for alarm, but to connect me with someone that could best monitor me. I'm stage 3 and have been seeing them every 6 months for 9 years. While there isn't much change in GFR from visit to visit, she helps me address other things to keep me healthy, such as my vitamin D deficiency, and anemia. I'm of the mindset that a second set of eyes on things can't hurt!
Agree!! Thanks.
Yes! My doctor did not even diagnose me. I had to diagnose myself based on my labs after doing a lot of research online. I have a new doctor now, but he is in no hurry either, even though my CKD has just progressed from 3a to 3b and according to the National Kidney Association's eGFR Calculator I should be referred to a nephrologist
and be seen by my doctor 3 times a year because I have very high risk for fast progression (and, BTW, have high uric acid plus mildly high and growing potassium level in my blood). I have also asked for referral to a kidney dietician but was told that my CKD is stable and there is no need yet for that. I live in Sweden but am traveling to another country where I can have access to a nephrologist and a special dietician as well as getting blood work done to see if any complications are getting worse and to get proper treatment.
My Dr’s reaction was the same, got a 2nd opinion yesterday, she said the same thing, no changes needed. She thoroughly reviewed my lab work
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