Fibrillary glomerulonephritis

Posted by jennifer208 @jennifer208, Jan 22, 2020

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

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

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.

REPLY
@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.

REPLY
@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.

Jump to this post

@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.

REPLY

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...

REPLY
@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.

Jump to this post

@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

REPLY

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

REPLY
@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

Jump to this post

REPLY
@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

Jump to this post

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

REPLY

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.

REPLY
Please sign in or register to post a reply.