Hi. I'm Nancy. I'm 61. I've had Type 1 Diabetes for 47 years, Coronary Heart Disease for two years, and was just diagnosed with Kidney Disease, Stage 2. My endocrinologist who diagnosed me told me virtually nothing, gave me a couple of hard-to-understand handouts and shoved me out the door. (I'm getting a referral for a new endocrinologist.). I then went to my primary doc who explained things to me a bit better. She said I don't need to see a nephrologist or a nutritionist at this point. She told me to keep my A1C and BP low. Right now I'm at A1C of 6.3 and BP around 118/62. I walk or elliptical about 5 days a week for about 30-45 minutes. Doc said only to watch the amount of protein I eat at one time, but otherwise gave me no other guidelines, even though I asked about seeing a nutritionist and a kidney specialist. I've been doing a lot of reading, which led me here! I am feeling unsettled and don't know if I should demand to see a kidney specialist or if this is normal at this stage. Any advice? Thanks so much.
New here. Just diagnosed. : Hi. I'm Nancy... - Kidney Disease
Welcome! You are definitely in the right place and among friends.
I feel badly that you are feeling so conflicted and that your endocrinologist has treated you so shabbily failing to do his/ her job adequately. As a Type 1 or any diabetic, kidney care and monitoring is so essential to maintaining good health as diabetes can have effect so many parts of the body.
If your endocrinologist is not providing you with the proper care and information in layman's terms, then perhaps it is time to seek another opinion.
I can see how hard you work at keeping yourself as healthy as possible ; it is reflected in your A1C , BP and exercise regiment. Kudos!
Honestly, knowledge is power! Putting a nephrologist on your health care team is a great idea. They should do their own assessment based on labs and their findings and be better able to direct you from there.
As far as a nutritionist, excellent for being proactive and wanting to seek the advise of a professional who can guide you and give you suggestions as what foods would be healthy and beneficial to all three of your health issues.
I am sure that you are acquainted with the ABC's of heart health and diabetes. Watch your sodium- 1500- 2000mg a day. No red meat, or processed meats which have additives and high sodium as cold cuts, hot dogs, bacon and ham. In the case of kidneys, no canned or pre- packaged/ frozen entrees
Lots of fresh or fresh frozen steamed vegetables as cauliflower, zucchini, onions, peppers, eggplant, broccoli, and cabbage.
I know with diabetes, you need to watch your fruit consumption. Apples, blueberries, strawberries and raspberries are great.
My brother is a severe type 2 diabetic who does not eat white bread, so the nutritionist may be able to help you there as well as how much and what kinds of dairy is best for you!
Advocating for yourself is to be applauded!
Please keep in touch and let me know how you are doing and what you have come up with.
Thanks so much for your reply! I don't know anyone personally who has kidney disease, so I am very happy to find a place for support.
I really appreciate your suggestions. I'm working on finding a new endocrinologist now, so maybe when I get an appointment I will ask about a nephrologist and nutritionist.
It appears that I won't have to make too many changes to my diet....I don't eat hot dogs, much red meat, or processed food, fast food, fried food or frozen dinners. We eat a lot of fresh fruit and veggies. I'm not familiar with a Type 2 diet, because I have Type 1 Diabetes, but fruit is not off limits for me. As long as I know how many carbs are in any food, I can eat it and take the appropriate amount of insulin with my insulin pump. That is very different from when I was diagnosed in 1971!
Thanks again for your reply!
I realize that what I'm going to say may sound strange, but "You are lucky." I say that because there aren't too many people here who were told they have CKD as early as you. I wasn't told until Stage 3.
Why your physicians aren't giving you more information now is not a mystery. We all have that concern. If you are in the USA try going to davita.com and sign up for a Kidney Smart class in your area. It's free and lasts about 90 minutes. You'll get a lot of information and come up with some intelligent questions to ask your doctors. If you aren't in the US try going to kidneyschool.org/mods/ Those are individual modules that you can access and play at your convenience and learn much about your CKD.
Bring a list of all of your medications with you and run through the list with your physicians to be sure that there are no interactions with CKD and your other health issues. I also use drugs.com to verify the medications I take and the dosages to be certain that I'm not taking anything that's counter-productive. Be sure to also include any over the counter items you take like vitamins and any other supplements.
Back to davita.com and check out the recipe link there for a lot of excellent ideas for kidney-friendly meals.
Come back often to share and ask questions.
Hi. Thanks so much for your reply. I really appreciate it. Interesting that docs aren't telling people about their disease right away. Crazy! I looked back at my previous blood and urine test results and when compared, I can see now that my tests were slowly creeping toward "not normal". I never noticed because I wasn't tracking the results from test to test. But the docs had to have known it. Makes me mad that they never said anything to me!
Thanks for the website suggestions. I will definitely find a class. And my husband and I will look for some good recipes too.....he is the cook around here! Good idea about the drugs too. I've been started on a bunch of new drugs over the past couple of years for my heart, so I should make sure they are all ok for me to take now!
Remember, the more health issues we have along with CKD there may be times when you have to take one medication to help with a more concerning health issue and that may require a dosage adjustment for another med. That's when you have to make a decision and determine which avenue is more important. It's a tough place to be in, but one many of us have to make.
Nancy: It is not that doctors don't tell you, but my nephrologist says many GPs and other doctors just are not educated in "GFR" numbers and other signs if failing kidneys that they just overlook it. In my case, i was really sick (shortness of breath, throwing up, dizzy at times, urine smelling, etc.) and even after an Internist educated at Emory University saw my blood test, SHE didnt even identify my Stage 3-4 CKD. She let me go 4 more months without diagnosing it and only prescribed BP med. [This stupid iPad App isnt allowing me to see what I am typing, so I will continue on the HealthUnlocked site.]
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I typed more, but then someone came to my house to visit and everything I wrote was erased when login timed out. Grr. Hate that! BTW:. My Nephrologist says that the entire commercial cereal isle at the grocery store is FULL of phosphorus. The FDA does not require food companies to even list that there is ANY Potassium or Phosphorus in the food - even tho it does. Amazing! Davita.com has a great food calculator/analyzer that gives the amount of phos and potass is in popular foods. Also, check out AAKP.org. They sell a small food calculator book that you can keep in your purse. It isnt expensive.
I just did a lot of research online when I was diagnosed, and now I only donate clothes and household items to The American Kidney Service. They do good things for kidney patients!
Dialysis isn't fun! Please stay healthy since you were given an early notice! Good luck!
I agree with Mr. Kidney--most of us did not find out we had CKD until stage 3 or later. The more you find out now, the more changes you make, the more you can prevent things from getting worse.
So sorry to hear u r having problems. Please just get all and I do mean ALL the information u can. I did not know that taking NSAIDS or any other med. would hurt me later down the road and wish I had known by taking charge of my own health. Look things up, read, ask, and see what is best for u but please think about when u get older. It matters. Praying for u. God Bless. Keep us informed
I am stage 3,after getting a second opinion I realize I don’t need to see a Nephrologist or dietician at this point, my kidney function actually improved at my last Dr visit. I just watch what I eat but mostly no salty stuff or red meat and I’m doing fine.
I’m with you Jenkea..Dont want to make my diet too complicated and will do the common sense things like you have.Lots Of water,exercise and no salt or red meat.