Brand new and still in shock

[summr]

A couple days ago I found out that my GFR is at a 58-61 depending on how the calculation is done. Bottom line is I searched through old blood work and found that I have been having kidney impairment for as long as the bloodwork goes back. In 2017 at 40 years old my creatinine was .9 (I am female). Then in 2018 it went up to 1.0 and now my creatinine in 2019 is 1.1. I am brand new to this but that feels like a bit of steep decline. If I continue to go up to 1.2 in 2020 and so on, I would be headed for stage 1 in a decade or so? Not sure on the math. Is this a sign that my progression is fast? Also they are doing a urine culture now and I still dont have the results so I dont know about the albumin in urine yet. Dont know if I have it. However, the whole reason I went in to get the blood work was because my kidneys have been throbbing for weeks. I know its the "silent killer" so I am surprised my kidneys hurt so much. Its a dull ache, not sharp pain. Any feedback very welcome as I dont know where to turn. Thank you.

[Hidden]

Hi and welcome to the community. I have posted here the link to an article that you might like to read.

davita.com/education/kidney...

Now that you have read the article, use that same website, davita.com to register for a free, 90-minute Kidney Smart class in your area. The class will provide you with a lot of resources and information on what you can do now to slow down the progression of CKD. You are way ahead of many of the folks here because you found out early that you are a CKD patient. For example, I found out two years ago that my GFR was 32 and I was Stage 3. When I went back and obtained my labs for the two previous years I was alarmed to learn the I had CKD for over 2 years before I was told.

I took that class, did a lot of research and am now the best advocate I have for myself. It isn't easy but it is doable.

You are already ahead of many folks here because you have a lot of time to slow the progression before you get to where we are. Over the last two years, I have managed to move my GFR to an average of 48. (That is also my last labs' GFR. When I found out I asked for a referral to see a Renal Dietitian. I brought all of my lab results with me and together we worked out a kidney-friendly meal plan that I am still on today and will be for the rest of my life. I have put together a Care Team of physicians that will no hide information regarding my health from me. They offer me their best medical advice, and I make the decision regarding the treatment options available. If any of the doctors had an issue with that they were no longer on my CT. To this day, I have a nephrologist, PCP, cardiologist, urologist, retinal specialist, optometrist, endocrinologist, dentist, pharmacist, and renal dietitian, on my team.

I use drugs.com to check on all of my medications for any possible problem that will affect my CKD.

The RD and I now meet, either in person or by phone or e-mail when there is a significant change to my labs.

The recipes on the DaVita site are helpful but should not be taken as is. You have to learn to make substitutions to each one based on your own health issues and avoid excess amounts of sodium, potassium, phosphorous, protein, calcium.

You've found this site and that is a major plus. There are many knowledgeable people here that can help by answering questions and offering advice.

Best of luck to you.

[KidneyCoach NKF Ambassador]

Sounds like you're being proactive with your care. That's great. Your numbers are great. I haven't had numbers like that for myself in maybe 35 years or more. I also would recommend kidneyschool.org Its great information. Hang in there. Blessings

[lowraind]

Just to clarify--with CKD, stage 1 is best, stage 5 is lowest.

[JimVanHorn]

My creatinin was 4.7 and then 5.1 . I was in stage 4 and really went on a Kidney diet!!! After 3 months my creatinin was 3.7 ! So for you the diet is the answer. It is OK to be vegan, but that is not the answer either. I eat egg whites for breakfast but have to watch vegetables as well. Things I do not eat are potatoes, tomatoes (or Ketchup), oranges (or juice), bananas, avocado, raisins, black beans, bran or granola, nuts (peanut butter), chocolate, all because of high potassium. Then there are phosphates in dark sodas (Coke and Pepsi), and in all prepackaged meats like bacon, ham, sausage, hot dogs, lunch meats and canned meats. Phosphates are in all canned foods and should be avoided. They even put phosphates in frozen dinners! So sodium chloride (table salt) in high quantities should be avoided. If something tastes salty, spit it out! Sodium Bicarbonate is hidden salt and found in french fried foods to make the product look bigger than it really is. Like Coronal Sander's chicken or Long John Silver's fish. Baking soda is used in cookies and cakes to make them "rise". We forget about the sodium, because we do not taste the sodium. Ask you nephrologist how much water you should drink daily. The amount changes with your progression of the disease. Red meats, beef and pork, have more phosphorus and are harder on the kidney than chicken, turkey and fish. Processed cheeses have high sodium and phosphorus. One meal should not have more than three ounces of meat protein. So fresh foods are better then processed foods, because of the preservatives and additives. You don't have to go crazy, just keep these things in mind when you make food choices and with time it will become a normal diet. So if you get a few potato chips with lunch eat a few of them, but don't finish the bag! Making these changes can help your kidneys and you can stay where you are with your stages.

[orangecity41 NKF Ambassador in reply to JimVanHorn]

Thanks for the good reply and encouragement. I am on similar diet. Thanks for the pointers on what to watch for in foods. I am almost vegan myself and renal diet has helped slow down the progress.

[PopcornLover1971]

I am in the same boat as you - I am 47 and my eGFR has been bouncing between 49 and 59 for the last 9 months. I don't have high blood pressure or diabetes, and, according to a test two weeks ago, no protein in my urine. A bit of high cholesterol but that is about it (along with Polycystic Ovarian Syndrome). I have been on alert since March and this is eating away at my whole life and my sanity.

I am so sorry that you are also having to struggle with this. I wish I had some sage advice, but I have been reading many posts on this forum and I have to say that people are so kind and so generous with their time and their advice. I wish you all good things, Summr.