Fibrillary glomerulonephritis

Hi @jennifer208, I moved your latest message to the original discussion you started on glomerulonephritis so that you can stay connected with the members who know your story. Jennifer, did the doctors at Mayo Clinic explain what a bone marrow biopsy might be able to indicate? Are the Mayo doctors coordinating with your local doctor?

They are not. I have a phone appointment Monday with the Mayo clinic in Minnesota

@jennifer208 We will be interested to hear what the doctors have to say, after your appointment on Monday. Good for you for sussing everything out and getting that appt so quickly! @colleenyoung, if the indications are there, the reason for a bone marrow biopsy in this situation might be to rule out IgA nephropathy as spoken about in my previous post here on Jan 23.
Ginger

So I go Feb 14 to my nephrologist here in Idaho the 14 of February. I don't know what she's going to do. But when she told me she said as of now there's no treatment available. The Mayo clinic told me to get a bone marrow biopsy. Can't do that til the appointment with my doctor. So I'm searching to see if there are any clinical trials research out there for my disease. I also was told it's very rare

I have been on your same journey since Oct 2017 and just found out Friday I am now eligible for transplant evaluation.
I visited Mayo Rochester in Apr 2019 and was also told there is no cure and very rare.
I have had 4 Rituxin treatments and felt so much better until they no longer seemed to help.
I have figured out (after repeatedly asking for diet information and not receiving any) that diet is a big factor in feeling better. I met with a dialysis nurse/dietician who was of great help and gave me info on what NOT to eat.
I wish you all the very best on this journey!

Thanks so much for sharing. I actually ordered a cook book on Amazon strictly for kidneys. As for the treatment you received I was told my insurance wouldn't cover it. So I feel like a sitting duck

@jennifer208 A member named @kamama94 has posted a renal guideline here on Mayo Connect. She is part of this kidney group, also. If you click on her name and go to her profile, her messages are listed. She has a boatload of helpful information that will keep you reading, and hopefully give you some insight. She also deals with diabetes, and you may know that kidney disease and diabetes are often involved with each other.
Ginger

@gingerw, my apologies for the delay publishing the recipes using foods CKD patients once were told to limit or avoid completely. I'm still experimenting with ingredients, amounts, substitutions, etc.

One thing I will emphasize in the collection sequel is portion control. A regular-size serving of potatoes, for instance, may contain too much phosphorus and potassium for a renal patient whereas a 3-bite serving would fall within daily limits and one would be able to enjoy the taste of a dish one used to be able to eat without consuming a whole "normal" serving. In this case, taste is the key. Large isn't necessary.

Also, I want to remind everyone to read labels. Some of the mineral/nutrient values in my original recipes are no longer valid as manufacturers and producers have altered ingredients and amounts in some foods since the recipes were created. From time to time, everyone should recheck ingredients and nutrient amounts regardless of what my first recipe collection lists these as.

Then there's the problem with phosphorus. Phosphorus content isn't rquired to be listed on food labels so if a product manufacturer doesn't assay for phosphorus or doesn't volunteer the iinformation if the phosphorus has been assayed, your only resource to determine phosphorus amounts per serving is the USDA list of minerals in generic versions of foodstuffs and the phosphorus figures may or may not be relevant to the brand you purchase. A 10th of a milligram probably doesn't matter but a milligram or two and definitely a gram of something which should be limited can be pretty important to a kidney patient.

I love hash brown potato patties and can have one occasionally if I watch potassium, phosphorus, sodium and protein in other meals the day I have the potatoes. Since the potatoes are slightly pre-cooked and riced before being formed into patties, minerals already have been reduced.

The store brand I use does not list phosphorus amounts on its label, however, so a store employee contacted the producer who replied that there were 814 ppm (parts per million) phosphorus in their patties. My daughter and granddaughter and two friends set up an equation to convert the 814 ppm to milligrams per 68-gram patty:

Convert everything to the same unit -- milligrams. Then take 814mg (=814 ppm) divided by 1,000,000 mg (1 mg=1 ppm) which gives you 0.000814 then multiply 0.000814 times 68,000 which gives you 55.352mg.

I know that sounds extremely complicated and usually ppm refers to liquids, although it also can refer to solids such as soil.

Since 1 ppm (parts per million) = 1 mg, you must divide 814 ppm by 1 million. That's how you get 0.000814. And since one patty is 68 grams or 68,000 kilograms, you have to multiply kilograms by 0.000814 to get 55.352 mg phosphorus per serving.

Which can change, of course, if your manufacturer/supplier changes amounts of ingredients, LOL. Customers ALWAYS should read labels before every purchase of any given item. Most don't.

Sorry for the long post but now you see why it's taking me months to get the new recipes ready for you to use. . .

@jennifer208 A member named @kamama94 has posted a renal guideline here on Mayo Connect. She is part of this kidney group, also. If you click on her name and go to her profile, her messages are listed. She has a boatload of helpful information that will keep you reading, and hopefully give you some insight. She also deals with diabetes, and you may know that kidney disease and diabetes are often involved with each other.
Ginger

@gingerw, my apologies for the delay publishing the recipes using foods CKD patients once were told to limit or avoid completely. I'm still experimenting with ingredients, amounts, substitutions, etc.

One thing I will emphasize in the collection sequel is portion control. A regular-size serving of potatoes, for instance, may contain too much phosphorus and potassium for a renal patient whereas a 3-bite serving would fall within daily limits and one would be able to enjoy the taste of a dish one used to be able to eat without consuming a whole "normal" serving. In this case, taste is the key. Large isn't necessary.

Also, I want to remind everyone to read labels. Some of the mineral/nutrient values in my original recipes are no longer valid as manufacturers and producers have altered ingredients and amounts in some foods since the recipes were created. From time to time, everyone should recheck ingredients and nutrient amounts regardless of what my first recipe collection lists these as.

Then there's the problem with phosphorus. Phosphorus content isn't rquired to be listed on food labels so if a product manufacturer doesn't assay for phosphorus or doesn't volunteer the iinformation if the phosphorus has been assayed, your only resource to determine phosphorus amounts per serving is the USDA list of minerals in generic versions of foodstuffs and the phosphorus figures may or may not be relevant to the brand you purchase. A 10th of a milligram probably doesn't matter but a milligram or two and definitely a gram of something which should be limited can be pretty important to a kidney patient.

I love hash brown potato patties and can have one occasionally if I watch potassium, phosphorus, sodium and protein in other meals the day I have the potatoes. Since the potatoes are slightly pre-cooked and riced before being formed into patties, minerals already have been reduced.

The store brand I use does not list phosphorus amounts on its label, however, so a store employee contacted the producer who replied that there were 814 ppm (parts per million) phosphorus in their patties. My daughter and granddaughter and two friends set up an equation to convert the 814 ppm to milligrams per 68-gram patty:

Convert everything to the same unit -- milligrams. Then take 814mg (=814 ppm) divided by 1,000,000 mg (1 mg=1 ppm) which gives you 0.000814 then multiply 0.000814 times 68,000 which gives you 55.352mg.

I know that sounds extremely complicated and usually ppm refers to liquids, although it also can refer to solids such as soil.

Since 1 ppm (parts per million) = 1 mg, you must divide 814 ppm by 1 million. That's how you get 0.000814. And since one patty is 68 grams or 68,000 kilograms, you have to multiply kilograms by 0.000814 to get 55.352 mg phosphorus per serving.

Which can change, of course, if your manufacturer/supplier changes amounts of ingredients, LOL. Customers ALWAYS should read labels before every purchase of any given item. Most don't.

Sorry for the long post but now you see why it's taking me months to get the new recipes ready for you to use. . .