Very confused help

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I am 62 yr female. My brother had transplant 13 years ago due to kidney failure from extreme HBP so I am familiar with what he went through. 6 years ago I began to experience health issues that appeared to be kidney related and they have continued yearly. Like clock work every early fall I have almost every symptom of ckd. My GP does blood work GFR 74 ultrasound, CT scan, urologist, etc and by February everything goes away. ( we eat a LOT of fresh fruit and veggies through the summer ) This year has been more extreme and my potassium showed high at 5.4 for the first time but my gfr and crestine remain the same. I have low BP that can spike and vascular issues. My GP keeps running tests but aside from potassium that has gone down to 4.8 with change is diet (less veg) does not know what else to do.  Any suggestions why this happens and direction. 

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  • Posted

    Hi k81614,

    I'm not a doctor so am not qualified to provide any medical advice. But my experience is somewhat like yours; although there are some important differences.

    Similarities:

    1. Elevated potassium intermittently for 3-4 years with creatinine and eGFR in normal range. All other electrolytes in normal range; just sporadic elevated potassium.

    2. Put on a low potassium diet that pulled my potassium back into normal range.

    Differences:

    1. I'm a Type II diabetic

    2. My father had CKD with renal failure that required in home hemo dialysis. His CKD was due to very high blood pressure.

    3. In addition to the low potassium diet I was told to drink more water. That seemed to help.

    4. Began having problems with anemia during the third year of my potassium issues but otherwise my data remained in the normal range.

    5. Toward the end of year three there was a decrease in my eGFR. It then began varying over successive labs.

    6. By the end of year four my creatinine had elevated to 1.2 and my eGFR had decreased to 50. I was referred to s nephrologist. That was in early Nov of 2011.

    My renal function has plummeted twice since then. Both times my nephrologist was able to achieve a partial rebound and then stabilize them.

    My creatinine is now 3.2 and my eGFR is 15. I'm either very low Stage IV or high Stage V.  I'm following a very low potassium diet (2000 mg  a day) and take a potassium binder. I'm also under treatment for severe anemia (EPO injections about once a month and iron supplements 3 times a day). My blood pressure is still in fairly good range although it is variable. I have not yet been diagnosed with peripheral artery disease. My diabetes is totally controlled without medication; just diet and exercise. My A1C is consistently 5.0 and has been since March of 2011 three months after it was diagnosed.

    What seems similar to me about your data is the elevated potassium pattern. If i was able to go back in time I would seek out a nephrologist appointment as soon as my potassium began varying like mine did. I will never know but wonder whether getting a nephrologist involved sooner would have preserved more of my renal function.

    So I would suggest getting to abnephrologist. 

    Best wishes,

    Marj

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    • Posted

      Thanks Marj. With this last intense round I am now going to push to see nephrologist which here is Canada may take months. I know something is wrong and I feel 6 years has caused damage.  I used to drink a lot of water 10-13 glasses a day and my doctor asked me to cut it down to 6-8.  At the moment the flank pain, nausea and leg cramps are most concerning as they are always there and I don't want to take anything.  My brother who was 51 was lucky to receive a transplant but never able to return to work due to issues related with his medications and side effects. 

      I know what he has gone through and how difficult it is to receive a transplant 

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    • Posted

      I think it's wise to get this checked out by a nephrologist just to be sure everything is okey. As you note, it's pretty problematic once the renal function deteriorates--it often cannot be recouped. You've still got plenty of function now so it's important to preserve what you've got.

      Marj

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    • Posted

      Marg. My gfr is 11. It was 13 but dropped after the fistula operation. I remember when my gfr was 20 & i was doing everything. Only setback was freq nocturnal bathroom visits. I do feel very tired now with 11 gfr but I'm still able to function ok. I really can't tell the difference betw 15 and 11 gfr. A very big dif betw 20 & 15. I had two kidney doctors and all they can do is monitor the decline. Do you also find that frustrating? In 3 yrs there might be an artificial kidney which for me is too far off.

      How do you cope with low energy levels? I also find the diet gets a little boring esp with xmas coming.

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    • Posted

      John,

      I've been grappling with very severe anemia since the summer of 2013. My nephrologist has tried several things to treat it but what has worked the best for me has been s combination of EPO injections and a medication called Auryxia which I take theee times a day with meals. The medication is also a phosphorus binder--but I'm taking it for my severe anemia. My phosphorous levels have been fine. However my nephrologist has told me that your phosphorous really can't go too low so it's safe for me to be on that medication.  

      For me, it has been the extremely severe anemia (hemoglobin at 5.6 without treatment) and the very low blood pressure (82/54) with frequent sudden plummets to extremely low BP (62/41) that have caused the majority of my problems. Now that we finally have those two issues under more effective treatment I'm feeling and functioning much better.

      I'm s pretty robotic eater plus haven't had much appetite or energy to cook. (I live alone which has made it pretty challenging to have the right good fixed for myself. It took some time but I finally get s system in place that is working much better as far as me having the right good fixed foe myself nearly all the time🐶wink But that really did take several months for me to get that system working effectively. My anemia and BP really made me pretty much nonfunctional for about 18-20 months.

      I purchased a slow cooker/crock pot that has a metal insert rather than a ceramic insert. I can steam, roast, brown, or slow cook food in it. And the insert is dishwasher safe so cleanup is much easier.) o brown my beast in it first. Then I put the veggies and low sodium chicken broth in and set it to cook as s slow cooker. It has a timer and will sutimatically shut off when it's done. That's a really good feature. If I happen to fall asleep while my food is cooking I won't wake up to find my house on fire.)

      After the food is cooked I eat one serving. I then subdivide the rest into individual servings and freeze them. Their my renal friendly version of frozen meals.

      I fix two different things every weekend, one on Saturday and one on Sunday. So my freezer typically has 5-6 different frozen meals in it at one time with several servings of each. All I have to do on week nights is take one out of the freezer and heat it up in my microwave. This system has been working really well for the past 2 1/2 years. 

      For breakfast and lunch I eat exactly the same thing every day--but I have done that all my adult life. But it's a serving of high protein steel cut oatmeal for breakfast and a serving of Greek yogurt with fresh fruit (i.e., blueberries, raspberries, strawberries, or black cherries). So dinner is my only real variation for food. But that has been the best way for me to deal with the cooking living by myself. I'll put the high protein oatmeal recipe in another post.

      At the holidays this gets a little tricky--it's pretty difficult to socialize on this very restrictive diet. So I usually invite friends out for lunch 1-2 times a week. I choose the restaurant do I know there is stuff I can eat bringborepared st it. I also have friends to my home for dinners that I cook. If I cook it I can eat it.

      This week I'm having some friends over for roasted turkey breast (fixed in my slow cooker) roasted caulifliwer with garlic and chives, an apple cranberry coleslaw (Davila recipe), white rolls, and peach raspberry fruit crisp with vanilla ice cream for them and cool whip for me.

      So yes, the holidays can be challenging to navigate--it's like walking through a field of food land mines🐶 But I enjoy socializing with friends and so decided about 4 years ago that I was going to handle the holidays differently so that I could still socialize without getting myself really out of whack with my renal panel data.

      It's a life of balance: balancing good testrictions; bsksncing daily activities so you get everything fine throughout the week without overly tiring yourself; balancing work obligations and activities so not to overture yourself there either. Since I live alone I need to be sure I include social activities in each week as well--of course I need to balance them too.

      As long as I keep everything in balance I'm able to manage by myself and I feel and function pretty well--I need to be sure to take my meds daily as prescribed. And I definitely exercise daily too.

      Your other comment--yes my nephrologist essentially just monitors my kidneys as they decline. He changes meds as needed to try to keep me feeling and functioning well. He also knows that it's really important to me to be able to keep working. So he has been very focused on providing a treatment plan that supports that goal for me.

      My eGFR has just improved from 9 to 15 about a month ago. I'm definitely feeling much better with it at 15 than I did with it at 9. Plus if it will stabilize at this level for a few years that will give me a little mire time before PD dialysis.

      I haven't seen my nephrologist for an appointment since my renal panel has improved. I'll see him again in late January. He had planned to discuss testing for kidney transplant eligibility in that appointment. I expectcwe'll still discuss that but font know ifcwe'll move forward with that testing right away or wait hit my kidneys yo deteriorate again. I'm hoping we'll move forward. Although I would pursue a deceased donor kidney should I qualify, I would hope I could be put on the transplant list now even though my kidneys are going a little better.

      Of course I'm just taking this one step at s time. Right now the goal is just to learn if I even qualify for s transplant. If I don't I know that I'll be pursuing PD dialysis when it's time. I just hope that will work well for me.

      Well, I'll share the high protein steel cut oatmeal recipe in my next post. And, no, it has not elevated my phosphorous levels nor has the Greek yogurt I'm eating at lunch. So these may be okey for me but not for others--but I'll share anyway as there are likely others who can safely eat this too.

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  • Posted

    Hi

    Your potassium is only just elevated and the fact it returns to normal is good.

    Your EGFR is great at 74 so not showing CKD

    The fact you are being monitored regulary is really good.

    Try not to worry or the stress will make you ill!

    Good luck!

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    • Posted

      P.s dehydration can elevate the potassium and also if the blood cells are damaged when the blood is taken.

      If it happens every fall maybe you are a bit dried out from summer?

      Take care.

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