Hello All, I've recently been diagnosed with Fibrillary Glomerulonephritis following a years worth of testing and struggling with "what is happening to me". I have a great local Medical Team who have really pushed on finding the answer...they did FibGN. I have researched everything about the rare disease I can find papers/reports/studies/opinion, etc. Unfortunately, my Team nor their associates have any experience with FibGN so I now know as much as I can. Fortunately I have a scheduled appointment at Mayo Clinic Rochester MN in a couple of weeks which believe it or not I am excited about it. I have accepted the disease, it is what it is, so I will do whatever it takes to push forward and stop any progression, I'm on the high side of Stage 3a CKD.
I read this entire blog this evening and immediately joined the Connect particularly this chain. You all a very caring and sharing of info which is critical in order for us all to have the healthiest of lives we are allowed to have. I think we, with the helping hand of God, are the masters of our own care and treatment.
My biggest struggle has been/is the constant fatigue (I also have Long Covid), insomnia, and what and how to eat. I have lists of what Not to eat but what can I really eat. I have a follow on appointment with a RN Nutritionalist/Dietician who specializes in Renal Diets so hopefully that will ease thing a bit. I also purchased "The Renal Diet Cookbook for the Newly Diagnosed" it seams as though there are some really good meal preps however there are some conflicting recipes, i.e. my Nephrologist and Dietician state no avocado however there is a recipe with avocado. Don't get me wrong it is a good book and worth the purchase.
Jennifer208 will you share with me the name of the facility and doctor in Atlanta?
I'm through rambling, thanks for "listening".
Keep Pushing On!