Fibrillary glomerulonephritis

Posted by jennifer208 @jennifer208, Wed, Jan 22 6:01pm

I was just diagnosed with fibrillary glomerulonephritis. I have an appointment the 27 at the mayo clinic in Scottsdale. Has anyone ever been diagnosed with this. Would like info. It says stage 3 kidney disease on my paperwork

@jennifer208

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

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@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

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@gingerw

@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

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@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 Some of the mineral/nutrient values in my original recipes are no longer valid as manufacturers and producers have altered ingredients and amounts in some foods since the recipes were created.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. . .

REPLY
@kamama94

@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. . .

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I forgot to add that the value of phosphorus in a generic hash brown patty listed by the USDA is 54 mg so the formula my family and friends came up with works very well as long as you know the phosphorus value in parts per million.

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@gingerw

@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

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Ok thank you

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@kamama94

@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. . .

Jump to this post

Thank you, @kamama94.

REPLY

I guess what I'm wondering is.. is there really no cure. And the doctor at the Mayo clinic in Scottsdale actually recommended I get the bone marrow biopsy. My nephrologist here said there's no need because the blood stains they did or whatever they are called were good. But I told her could we just rule it out. So waiting to hear if my insurance will help cover. Stressed. Also I'm getting laid off. So then I lose my insurance. Don't I qualify for some sort of government aid? I really don't know what to do.

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@jennifer208

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

Jump to this post

I am so sorry…it is very expensive.
My diet struggle revolves primarily around tomato based foods which I can no longer have. My winter diet…stew, chili, etc. If you are a big tomato fan, Google nomato sauce. I made it last week and it seems to be a great replacement. No tomatos and pretty healthy.

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@vhussey29

I am so sorry…it is very expensive.
My diet struggle revolves primarily around tomato based foods which I can no longer have. My winter diet…stew, chili, etc. If you are a big tomato fan, Google nomato sauce. I made it last week and it seems to be a great replacement. No tomatos and pretty healthy.

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@vhussey29 Thanks for the tip! Any idea how much phosphorus and potassium per serving in a standard recipe? I could look up my values for carrots, a beet, the onion, etc. and add it together then divide by # servings but I'm lazy.

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I have been given pages of "what to choose everyday" and what to stay away from..
This info includes all the food groups and is based on 1/2 cup servings and types and amounts (by weight) of protein daily.
Honestly, I was never taught or even told to calculate phosphorus or potassium…

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@jennifer208

I guess what I'm wondering is.. is there really no cure. And the doctor at the Mayo clinic in Scottsdale actually recommended I get the bone marrow biopsy. My nephrologist here said there's no need because the blood stains they did or whatever they are called were good. But I told her could we just rule it out. So waiting to hear if my insurance will help cover. Stressed. Also I'm getting laid off. So then I lose my insurance. Don't I qualify for some sort of government aid? I really don't know what to do.

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@jennifer208 Dang, that is a lot of stress to deal with, which you definitely do not need right now, right? Not knowing your age range, nor state, have you checked in to insurance coverage for your state? Be honest with your doctors. If you are being laid off, is your company offering you continuation coverage on their insurance? Called COBRA, you would be responsible for for the whole premium, usually for no more than 180 days, so i would check with the HR Dept.
Ginger

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I am 44and I Live in Idaho. Actually it's a self pay insurance not through my job. I just won't be able to keep it being on unemployment

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@jennifer208

I am 44and I Live in Idaho. Actually it's a self pay insurance not through my job. I just won't be able to keep it being on unemployment

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@jennifer208

I am 44and I Live in Idaho. Actually it's a self pay insurance not through my job. I just won't be able to keep it being on unemployment

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@jennifer208 would you qualify for insurance through the ACA? My daughter used to be a freelancer and was insured that way.
JK

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Just wanted to check in. My consult appointment is Friday with the hematologist. I will let you all know when the bone marrow biopsy is.

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