How Does My Diet Affect My Treatment?

This blog post was made by Susan Emeny on February 9th, 2017.
How Does My Diet Affect My Treatment?

I am so passionate about this subject that I don’t know where to start! To me, when you are starting, or even before you are starting on dialysis, a stringent dietary regimen is absolutely necessary if you intend to feel the best that you can. You have to fit your dialysis prescription with your diet. It is essential, it is difficult, and it is very rewarding.

Think about it. Dialysis is a fixed process; you do it the same way every time. How can you expect good results if you eat however much you want of whatever you want? The answer is you can’t—and you can’t blame your doctor, because he can only prescribe a fixed process based on your lab results, which probably change monthly if you are not watching your diet closely.

Let me tell you a secret: you can have great lab results and still feel lousy. I’ve had great lab results for 4 ½ years and felt lousy for 3 ½ years. I have gone from 60 liters of (NxStage) dialysate three times a week to 23 liters five times a week. My blood pressure has gone back and forth from under 100/50 when it was so low that I had to worry about crashing during each session to being constantly at 200/100. During this whole time my labs were in the prescribed range, every time.

My life started to improve in June of 2014 when I started home hemodialysis; it made another significant improvement 6 months later when a new doctor joined our clinic and started to seriously look for reasons that I felt so bad, especially after dialysis. He moved me from 3 days a week to every other day. It helped, but I still felt terrible after dialysis and felt terrible for the rest of the day. My labs were still good.

I need to mention that we have software that lets us track my nutrition and I have been diligent about using it ever since I have been on dialysis. We started reviewing my nutrition numbers, especially potassium, with my doctor and discussing the fact that my potassium levels were always on the very low end of normal, usually around 3.1 or 3.2.

My doctor told me to increase my potassium intake, so I did. I went from 2000 milligrams a day to 3000 milligrams a day. My potassium level jumped to near 4. I felt better but still felt wiped out at the end of a session. Based on these results and my attention to my diet, my doctor switched me from a 1K solution to a 2K solution. He was nervous with this change but was willing to try because I could show him how much potassium I was eating and I was willing to continue monitoring it closely.

I started feeling better and my blood pressure came down to a range of 140 to 160 without the use of blood pressure meds. It is a known fact that low potassium can cause high blood pressure. He cut me back from 30 liters to 25 liters and my potassium levels went to 4.6 or so. My doctor felt better, but I didn’t.

After more discussion with my doctor, we decided that the potassium in my blood was being depleted during dialysis and this was the reason that I felt so bad at the end. He reluctantly prescribed a 10 mEq potassium pill (390 milligrams each) that I took 45 minutes before the end of the dialysis session. I started feeling so much better that I could help get supper after getting off dialysis.

This was a key discovery for me. I need to keep my potassium level at about 5 and to take a potassium supplement about 45 minutes before the end of my dialysis session. I haven’t changed my prescription in the last 6 months and I have been feeling great. I’ve got my life back.

It is important to know that your body takes time to adjust to changes in both your dialysis prescription and your diet. Once I started with my new doctor, it took at least a year to get to where I am today.

You should also know that each style of dialysis, in-center, PD, and home hemodialysis each have their own dietary requirements and it wasn’t until I started on home hemo and my prescription slowly became what it is today, that my diet became less restrictive. I am now at five days a week with a prescription that works very well for me.

Now that I have reached that point, I can eat just about anything I want, BUT not all I want. I have to be very careful of how much potassium I eat since my potassium levels have to be on the high side of normal if I want to feel good and that can be dangerous if I let my potassium spike. Phosporous is no less important.

ESRD has forced me to endure a huge lifestyle change and has prompted me to learn all that I can about nutrition and how it relates to dialysis. The ability and the inclination to track my nutrition gave me my life back.

I urge everyone who is on dialysis or knows that dialysis will be in their future to learn all they can about nutrition and its affect on dialysis and personal wellbeing. If you would like to start, click here to search the USDA food database and begin the learning process. Under Select Source, click on the down arrow and click on standard reference.

Better yet, get a free diet list from our website, KidneyDietCentral and check out the other options. Keeping track of your diet will no longer be the impossibility it seems.

Comments

  • Michael Jackson

    Mar 9, 4:33 PM

    I too am a kidney patient and have been on dialysis fos 20 yrs. I was diagnosed with Esrd in 1997, I am a hemodialysis iin center patient. You are right when you say it takes a year sometimes longer to perfect your diet with your labs. Living with dialysis isn't hard when you are feeling well. I also am a peer representative for my clinin and help new patients into this new life. This is my way of giving back to the incoming new patients.

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  • Nieltje Gedney

    Feb 10, 9:04 AM

    Great article Susan. Thanks so much for emphasizing how important "we are what we eat" is, even more so for dialyzors. And the diet doesn't have to be overly restrictive, as you have pointed out. Since starting dialysis, I feel like I have become a detective, ferreting out clues to obtain optimal results, and hence, feeling my best. You have just added another tool to help me do this.

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