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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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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