Fibrillary glomerulonephritis

Hi Lilynette,

I had the same things for years. Nephrologist wanted to put me on rituximab also to participate in a research study.. My Nephrologist also suspected I had Lupus. How. I didn't have any symptoms or signs of Lupus. Drs decided to do a kidney cyst biopsy as well. IT was very frightening. Once I got to hospital doctor tells me. I am very sorry; however, I have decided I will not do a biopsy on your cyst in kidney which I understand is common with Glomerulonephritis. I was shocked as I had mentally prepare for this very uncomfortable procedure. Patient is numbed right above the biopsy sight . I would have preferred a Demerol pill to knock me out short term. Now I am more relived dr made this choice as there are risk factors involved when doing biopsy especially if there is possibility there could be malignancy. According to doctor cancer can spread. IT was a wise choice.
Dr office at major hospital in NYC billed medicare anyway or his staff billed Medicare.
I called them and said how dare you. I didn't have the biospsy procedure. This is called Ghost Billing and anyone that had any kind of procedures should watch what is paid by your insurance. This is illegal. I continued being very careful with diet. exercise and NO SALT, no caffeine, red meat, ect ect.
I had already gone through chemo drugs for breast cancer in my 40's and so no thanks to the Rituximab. I held out until I hit gfr of 17 then I got my kidney transplant. A CT SCAN of your abdomen is done before Kidney transplant as on occasion coronary issue are revealed and this needs to be addressed. You may be interest to read and learn about the new research with stem cell for kidney transplants at Mayo Clinic and George Washington University Hospital Georgetown? Research is being done using the donors stem cell that are given to the recipient. IF all works out person receiving kidney from sibling who match blood type and other criteria will help if you a person is selected to be part of this new research study. Not too many people have heard of the stem cell for kidney transplant. I suspect in years to come we will learn and know about what hospitals are interested in pursuing kidney transplants with stems cells If you were to find a matching donor. Having to take anti rejection medication is not easy. IT take a good amount of time for the body to adjust. Reminded me of chemo as My hair fell out totally. IT's a roller coaster ride. I found this info after I had my kidney transplant. Nine Months later it grew back. and curly too. I am permanently curly. haired now. Little freaky but no more messing with hair. Don't fear the condition you have just educate. yourself as much as. possible. Most importantly watch our diet, weight vip. exercise even walking to be in tip top shape should your GFR numbers fall. At the number you are at I don't believe you are even close to a kidney transplant. Best of Luck. Hope all works out for you.

Hello All! Thanks so much for all that you have shared. I've been on such a crazy journey over the last seven years. It seems it is now culminating in a diagnosis of Fibrillary Glomerulonephritis. In 2011 I was diagnosed with colon cancer stage 1. A poly was removed, and no additional treatment was needed. I proceeded over the next several years, having a colonoscopy every 6mths. In 2016 my son died in an auto accident my dad died three months later. In September 2020, I was diagnosed with uterine cancer, and my mom died within three days of each other. All of my female organs were removed, and because it was a fast-growing cancer, they recommended five treatments for radiation just to be cautious. No cancer was found in the uterus or the surrounding area. Earlier this year (February), I went in for routine bloodwork, and all my red blood counts were low.
I couldn't understand why I was getting winded walking up the stairs. I thought it was old age. My eGFR was 33. I went to my PC doctor, who explained everything to me, and I had no idea how serious this was. He, in turn, sent me to a nephrologist and a Hematologist. The hematologist set me up to get a shot that helped to stimulate my bone marrow to produce red blood cells, and it was a fantastic boost to my energy level and stamina. The nephrologist did a genetic test which came back negative, and then he told me the next step would be a kidney biopsy which was done on 6/30. I received the results of that in July, and they were inclusive. My nephrologist sent them to the Mayo Clinic for further analysis, and today, my doctor confirmed Fibrillary Glomerulonephritis. So that's where I am today. I'm due for another shoot this week, but my red counts have to be low to qualify for the shot. It seems sad to have to qualify for treatment that helps you feel better. I'm here to learn and possibly understand this disease to live the best possible life God has for me. I am also Grief Recovery Specialist, and I'm learning a lot about how our health is affected by grief and loss. Thanks so much for reading. DK

@dawniek Welcome to Mayo Clinic Connect. You have had quite the health and personal journey. Thank you for sharing with us.

From the Rare Disease Network, here is some information on your condition: https://rarediseases.org/rare-diseases/fibrillary-glomerulonephritis/
I hope this will help answer any questions, and that you will reach out if I can be of any help?
Ginger

@gingerw thanks for the link and the encouragement 💚

@dawniek I also live with an ultra-rare kidney issue, and struggle to find reputable information sources. It's not easy, and you know the saying, "knowledge is power"! Searches for scholarly articles related to my situation has led me to information that is useful to my oncology and nephrology specialists medical team. And in fact, was instrumental in adjusting my dialysis prescription.
Ginger

Jennifer, I endured Glomerulonephritis for four year and in 2021 I had a kidney transplant (my sister was my donor) initially drs in NYC wanted to give me Rutuxin,sp? and I passed. I just was very disciplined with my diet. and took medication from my other doctor not steroids. . I asked my nephrologist how in the world did I end up with this condition? HE wasn't about to go into length explaining, One interesting thing he told me that one possible way that the filters in a kidney are damaged is due to infection which we had in our body that settle in kidneys and no longer work filtering out waste product from our kidneys. IT wasn't painful at all yet I didn't become very tired at the end of the day and needed to sleep. I didn't have that get up and lets go energy. Mind sometimes got foggy and I would become forgetful.. Couldn't concentrate some was due to worry wondering when the ball would fall and my kidney would fail totally..I just got very and didn't have the energy I was used to having, One of the last advances is stem cells is now at sever major hospitals. Ask. your Mayo drs about the latest research with stems cells from the donor preferable a sister or mother which can be used before a kidney transplant take place. Best of luck .