Going From Stage 3b CKD to Stage 2 CKD!

Hello, and Happy Monday! The sun is shining and my spirits are lifted. I am so very excited for my Kidney appt. this Thursday!

A little back story. If you are new here, and you don’t feel like reading 2 years worth of updates on my kidney journey, I will give a very short summary. On Christmas Day 2016 I became very ill. I thought I had the Flu, but my symptoms got worse over the next few days. I realized something was very wrong, and being a nurse, I was pretty sure I was in kidney failure. I stopped eating, on purpose, and only drank ice water, until I could get into my doctor, which took a bit due to the holidays. I was actually feeling better by the time I did see my doctor, but not much. She referred me to Nephrology after doing initial labs, and they were scary labs. I knew I must have been stage 4 initially, prior to just drinking water for a week. This was very scary. I was only 48, and had young children still at home. I used to work on a Dialysis Unit, so I knew what the future would hold. I was stage 3b when I initially saw Nephrology in March of 2017. He did not give me much hope at all, and basically told me the future was Dialysis with no hope of improving kidney function. There was no reason for my kidneys failing, but over the months, with various test, no genetic or biopsy though, it was determined it was probably genetic, hereditary, and had probably been heading towards failure for many, many years. I won’t go into all of the anger that brought to me, and why, but I can say I was determined to not be on Dialysis, and that kidneys could improve. Since that time my kidneys have slowly started to improve. It took 4 years, but in March of this year my labs showed me back at stage 2. I was so excited, but of course the doctor burst my bubble, telling me it was probably a fluke, probably was not possible, and to not get my hopes up. Damn it! Do doctors not know when they steal a patient’s hope they steal their life? While he was pessimistic, I could also understand his view point, so we agreed to continue with every 6 month testing, and if I stayed at stage 2 he would restage me, and start seeing me yearly. So, I said OK, now to prove him wrong. Yesterday, my 6 month labs came back and I am still stage 2. My Creatinine, the one marker I could never get back to normal is now 1.06, and 1.05 is normal. So, I am just a smidge above normal, but it was enough to put my eGFR at 60, which makes me stage 2. I was 61 the last time. It made my whole day, and all the hard work worth it! I will be asking my doctor this week to repeat my kidney ultrasound to see if the scarring has improved.

So what worked to help me get back to stage 2? I feel it was not just one thing, but a combination of things, much of which I learned on my own, and implemented on my own. I never didn’t tell him what I was doing, as long as he expressed interest in knowing. If he didn’t ask I didn’t tell. Here are the things that I feel helped me overcome my CKD obstacles. I can not say any of these things will work for everyone, but I am saying to talk to your doctor about them.

  1. First and foremost knowledge, and education about all of the things that effect CKD. Such as protein intake, phosphorus intake, maintaining a healthy blood pressure, how the kidneys work and what they need, reducing sodium in food, Sodium Bicarb, stress, Vitamin D, Iron, plant-based diet vs meat diet, weight loss, exercise, and so much more.
  2. I think this is the #1 factor that helped me: protein intake. Learning to eat the proper amount of protein that my body needs, tracking it, and sticking to that amount, never, or rarely over, but sometimes under. I follow a formula that I found on a renal website. I consume enough protein for my goal weight, not the weight I am. I have a weight loss goal, so I am consuming less protein than what my current weight would say I should have. If you have CKD ask your doctor about this strategy. I have been following this since last Fall, and I saw the best improvement in my eGFR after doing this.
  3. Phosphorus intake: This I think doesn’t get enough attention until after you go on Dialysis. Phosphorus additives in foods are not on labels, and you have to read ingredients. I think it should be required on labels. This is one of the main reasons I choose organic boxed foods, over non- organic, most of the time. Most of them do not have added phosphorus in them. Some do, though. If you have CKD learn about Phosphorus and how to manage it. Ask your doctor bc they probably won’t offer it.
  4. Blood Pressure: While I still could be a little bit lower, I am not high, and I do not take Blood Pressure medication. If you have CKD managing blood pressure is vitally important. You also do not want to be too low, either, as that will effect the kidneys in other ways, that are not good.
  5. Knowing how the kidneys work and what they need to function properly: This pretty self explanatory, but I learned so much that I didn’t know.
  6. Reducing sodium in food: This is the number 2 important thing. Processed foods, fast food, eating out in general, are all very high in sodium. If you are eating these types of foods on a regular basis you are damaging your kidneys. I do still eat bad food, sometimes, but I do not do it very often. I read labels, I track my salt intake, and I manage it well.
  7. Sodium Bicarb: When I was initially diagnosed, 3 months after my kidney actually failed, I was still in Metabolic Acidosis, though only slightly. I felt so much better so I didn’t even recognize it. My doctor prescribed me to take 1/2 tsp of Sodium Bicarb dissolved in water twice a day. This worked, and I still take it today, though I am not sure I need to. It is a buffer. If you don’t understand buffers and how it effects CKD, I recommend you learn about it.
  8. Stress: #3 most important thing I did was learn to manage my stress. Stress is a silent killer and if you are continually stressed, or should I say letting stress continually control and effect your life in negative ways, you need to learn to manage it.
  9. Vitamin D, Iron, Exercise, Weight Loss: I have done several articles on these topics, and you should check through my archives to read them. These 4 things are super important to learn about and manage if you want to improve your kidney function. They are complicated topics and too long to write in this little spot here.

What do I want you to take away from this post? Never, never give up hope! Do not let your doctor steal your hope. If they won’t teach you the things you want to know then teach yourself. Only use reputable sources, not influencers on Youtube in Instagram selling you snake oil treatments, or advice. It does take time, dedication, and commitment to make the changes, but if you are serious, then you can do it! Advocate for yourself, if you feel what a doctor is saying or recommending might not work well for you then discuss it and see if there is another approach that you can try. Ask to see a Dietitian, if your insurance doesn’t cover it, or you don’t have insurance, make it a point to save the money to see a dietitian. I encourage you to consider to stop eating fast food, and ultra processed foods. It is hard, very hard, I know, but when you start to see good results you might change your perspective.

Having CKD is a struggle, but Dialysis should not have to be your destiny. It doesn’t mean I won’t still end up on Dialysis some day, but for now at age 52 I will keep fighting to avoid it.

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my kidney update

My labs came back within 24 hours this time. That has never happened! Before I get to that I want to share an app I discovered that I love. It is called My Healthy Kidney, and I found it in the Google Play Store. It is free and it helps me keep track of nutrients for my level of Kidney Disease. I mostly use it for Phosphorus as that is the one nutrient that is not listed on labels. I still like Eat This Much, their website is great, but I don’t care for their app.

I have been following a mostly Plant-Based diet, but I was still consuming small amounts of animal proteins mainly because I didn’t want to get anemic. My Creatinine did come down slightly, and my eGFR went up slightly. As I continually read about these issues it is somewhat confusing as to whether the body can completely rid itself of Creatinine, once the kidneys are damaged, or just reach a baseline. There is a well known book available, that I have been reading, that basically states a Vegan diet and VLP diet can allow your kidneys to completely clean your blood of elevated Creatinine. I follow a lot of groups and I have not seen yet where this has been successful or true. I am not saying it isn’t possible, I just haven’t seen it yet. I am not Vegan, nor do I care to be Vegan , for several reasons that I won’t go into. So, now for the next 6 months I will try to eat no meat at all and see what happens. I will continue with an occasional egg, glass of milk and I do enjoy ice cream every now and then. I frequently consume 1 oz of cheese per day. When my next set of labs come due I will be able to evaluate whether this method helps or not. All of my other labs were perfect. This still leaves me at stage 3, but I have been stable for almost 4 years now and for that I am grateful. I did find a very lengthy article on new standards of care for people with CKD, that is being suggested for doctors to use. Of utmost interest to me was the amount of protein to be consumed in a day, and whether it was plant or animal protein. There was no recommendation as to whether protein should come from animal products or plant products, as to the healthier option that is for kidneys. I found that interesting with so many people opting to go Vegan for their kidneys. I was very much surprised by the new calculation for protein intake, which I will share in a future post. I have figured out the amount recommended for my stage and have been following that since I read it a few weeks ago. Organic and whole foods is another way of eating that I have been focused on. I have been able to not only maintain muscle mass, but build muscle mass using the protein intake calculation suggested and regular exercise with light weight training.

Remember that your body needs Protein. It is very important to the maintenance of your body. How much protein is the magical question, especially if you have CKD. Ask your doctor if they know about the new standards of care and if they are recommending them to you? Come back to this website to see when I post them if they are. Mine isn’t, and I intend to share them with him. They are fairly new though, and I haven’t seen him yet this year due to Covid.

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Foodie Friday: How To Make A Family Meal Plan CKD Friendly

This week has been an interesting week.  We did not follow the menu exactly due to some food preferences, and dislike of some of the choices I made.  At any rate, I will go over each meal and how I made them more CKD friendly.  Some of these we have not eaten yet, as the week ends on Saturday.

Sunday the 1st-  Breakfast for dinner.  This is pretty self-explanatory.  I had two eggs, whole-wheat toast, and fruit.  If you have issues with phosphorus eat white bread only.  If you need to control potassium levels choose low potassium fruits such as apples or berries.  I have only been buying fruit in season, except apples.  No one seems interested in apples.

Monday-  Miracle Pasta.  No one wanted this recipe.  Instead, I just made plain pasta with butter and garlic salt.  Use low salt butter and salt-free garlic for CKD friendly pasta.  I also made baked pork ribs with no-salt seasoning.  A side salad and fruit rounded out the dinner.  Skip tomatoes in your salad if potassium is an issue.  Also, skip the cheese in your salad. Cheese is high in sodium and phosphorus.  The darker green lettuce is the more potassium it has.  I use Iceberg.

Tuesday:  No cream Italian pasta was on the menu.  We actually had a ton of leftovers, so that is what we had.  I added a side salad for more veggies.  The Italian pasta recipe will be moved to next week.

Wednesday:  Menu not followed today either, my son treated to take out.

Thursday:  Mac n Cheese, steamed cauliflower, fruit, and chicken.  My kids like Kraft so that is what I made.  I don’t generally eat this.  It has a lot of sodium and phosphorus.  I did not have any last night.  I did have cauliflower with butter and garlic.  Pan-fried chicken cooked in olive oil and spices, mixed in with the cauliflower was delicious.  I also sauteed onions in with the chicken added tons of flavor.  I also had a banana.  If you have high potassium skip the banana and have berries or an apple instead.

Friday:  Grilled cheese and tomato soup.  If you can tolerate it have low sodium soup option.  If not have just a serving and avoid adding saltine crackers.  Add a side salad or fruit to round out the meal.  If you have issues with potassium have chicken noodle soup instead of tomato.

Saturday: Tomorrow we will be having ground orange chicken with brown rice and broccoli.  Making your own orange chicken will keep sodium and phosphorus levels lower than take out or store-bought prepared. I buy the whole grain brown rice and put it in the instant pot.  Brown rice is higher in phosphorus than white rice, so use with caution.  Broccoli is high in potassium, so if this is an issue for you, choose cauliflower instead.

That’s it for this week.  Take care of yourself and watch your diet to help keep your kidneys as healthy as possible.  A note about the protein above.  I parboil chicken, and eat only 3 to 4 ounces per meal.  If you would like help in learning about how food choices can help keep CKD more stable, use the contact form below to message me.

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