My Phosphorus "Journey"

[Marilee]

After failing at keeping my hubby's phosphorus numbers low using just the guidelines, I came up with my own plan/method that has worked really well. I decided to make it into a web-site to share with others who may find it handy - it's just a free Wordpress site, no strings attached:

https://mylowphosdiet.wordpress.com/

Our renal dietitian said that in all her years doing this I'm the only one to go this far, and maybe it's overkill, but it really helped us, so I'm putting it out there in hopes it helps even one other person on this journey.

[LorinnPKD]

This is awesome, Marilee!

[Michelle2016]

An excellent approach.

[lulu836]

Awesome.......thank you!   

[Marilee]

Thanks so much for checking it out I really appreciate that.

[MooseMom]

I don't think I've ever actually used the word "awesome", but truly, Marilee, your low-phos method is just that!

When you or a loved one is faced with ESRD, sometimes you feel completely powerless, like your life is out of your control.  Did you ever feel that way?  Was constructing this plan a way for you to feel more in control of things?

Your post should be pinned.

[Marilee]

Wow, thanks MooseMom. My hubby likes to say that he's my favorite hobby . But you're closer to the truth: As his phosphorus numbers got higher and higher I just had to do more, had to know more. I can't fix his kidneys, so I dove into this project with gusto - I had to fix SOMETHING. Thanks for seeing that .

[Charlie B53]

WOW!  You put a lot of work into figuring this all out.

I really liked the tables and the articles spelled it out even I could understand what you are doing.  And I am a 'Guy'.

I need to go dig in my bag and find my Dieticians card, she wrote he email aady on it for me long ago when I had something else for her.  She really needs to read this as it is a very unique approach to figuring meal planning that works.

Many, I assume, like me simply rely on taking a lot of binders.  Fortunate for me they work with no noticeable side effects.  Other it does cause problems.  They might well benefit from your studies.

Thanks again!

Take Care,

Charlie B53

[Simon Dog]

Tried nearly all -

Calcium Acetate - d/c due to raised calcium
Renvela - Could not get me at goal
Auryxia - Bingo, worked wonders, worth the black as ace of spades stools

Then, Auryxia denied by insurance because Lanthanum not tried yet

Currently on Lanthanum, waiting for result at next monthly

[Marilee]

Oh, Charlie, how cool that you want to show it to your dietitian . I showed it to mine and she said, "Nobody would read this let alone follow it". But I looked unsuccessfully all over the 'net for something like this and I can't be the only one.

[Marilee]

Wow, Simon Dog, I didn't even know there were that many kinds of binders! And here's me hoping they can reduce the number of tablets that my hubby takes at clinic next week. I'm really sorry that phosphorus is giving you such fits.

[PrimeTimer]

Thanks for sharing your diet plan! Your husband is very lucky to have you and I bet he loves your cooking. I cook for my husband too using renal diet recipes from the Davita and Fresenius sites. We both like the dishes and his labs are pretty good. And your plan will help us too I am sure. The only downside is that I've experienced symptoms of low potassium (muscle cramps) so I try to eat a few extra things to make up for it (bananas, potatoes, nuts). But I'm glad hubby's potassium comes in low every month. Sometimes his potassium and phos has come in so low that they told him to increase his intake. So the recipes seem to be giving him some wiggle room. Once I got the hang of reading labels and memorizing recipes, grocery shopping got easier. Takes a while but hang in there, no doubt it will get easier for you guys, too.

[Simon Dog]

Wow, Simon Dog, I didn't even know there were that many kinds of binders! And here's me hoping they can reduce the number of tablets that my hubby takes at clinic next week. I'm really sorry that phosphorus is giving you such fits.

Loads of info at https://en.wikipedia.org/wiki/Phosphate_binder though I did have to add ferric citrate/Auryxia

Never trust Wikipedia except as an initial source to give you an idea where to dig for authoritative info.

[Marilee]

Thanks, PrimeTimer! I've dabbled at the Davita site, but haven't found the other one yet - Do you have a favorite recipe from them? I'm so glad I only had to focus on one food restriction at a time - potassium, calcium, sodium are all fine so far - I'm glad we can keep things like tomatoes & bananas in our meals. Like you, when cramps come - for me at least - bananas help. Hubby gets cramps at night often, and we can't seem to get a good handle on them (other than wake up, get up, move, drink some water and cuss :p ). Hyland's Leg Cramp tablets often help, too, if he can remember to take 'em when sleepy.

[PrimeTimer]

Thanks, PrimeTimer! I've dabbled at the Davita site, but haven't found the other one yet - Do you have a favorite recipe from them? I'm so glad I only had to focus on one food restriction at a time - potassium, calcium, sodium are all fine so far - I'm glad we can keep things like tomatoes & bananas in our meals. Like you, when cramps come - for me at least - bananas help. Hubby gets cramps at night often, and we can't seem to get a good handle on them (other than wake up, get up, move, drink some water and cuss :p ). Hyland's Leg Cramp tablets often help, too, if he can remember to take 'em when sleepy.

Our "Top 3" faves are: Easy Shepherd's Pie (Davita), Chili Cornbread Casserole (hot & spicy found on Fresenius) and Easier Than Your Mama's Meatloaf (Fresenius).


Sometimes my husband gets leg cramps too and I think he said it means he is close to his "dry weight" as far as how much fluid they removed during dialysis. As far as his leg cramps at nite, he said it felt like his feet and legs were being tickled and then it would move up to his torso and arms. He's been on dialysis for almost 5 years but this only recently started happening. It got so bad that he couldn't go back to sleep so would sit out in the living room in his recliner for the rest of the nite. He finally brought it up with his Neph: it's Restless Leg Syndrome aka RLS. He was prescribed a low dose of Klonopin to take at bedtime. Problem went away. Such relief! He is finally getting a good nite's sleep again (and so am I). 

[Marilee]

Thanks for the recipes and the tip on the drug: We'll see if it's a possibility for my hubby and his amazing-array-of-meds. Thanks!

[Tío Riñon]

Oh, Charlie, how cool that you want to show it to your dietitian . I showed it to mine and she said, "Nobody would read this let alone follow it". But I looked unsuccessfully all over the 'net for something like this and I can't be the only one.

I did share your web site and recipes with my dietitian and here is what she stated:

"I think this site is excellent, what a great tool! The recipes are wonderful. I like that she replaces the baking powder with baking soda plus cream of tartar and Greek yogurt, and uses Greek yogurt plus water to replace milk in order to provide extra protein and less phosphorus."

"There are some other patients that I think will also find this site very useful, I'll pass along to them, thank you so much for sharing this with me. I look forward to seeing you at your clinic visit later this month!"

Well done!  Keep it up.   

[Marilee]

Woweeee! That totally made my day, Tio.

Thanks so MUCH for taking the time to show it and pass back such enthusiastic comments. I'm dancing now!!