Mayo Clinic Connect
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
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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@jennifer208 You have several people from here sitting in your corner, rooting you on! Let us know how else we can support you?
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
@jennifer208, I want to drop in for a short virtual visit because it has been a while since we've heard from you. How did your consult go with the hematologist? What have the doctors suggested as your next step in developing a possible care plan for you?
Liked by Colleen Young, Connect Director, Ginger, Volunteer Mentor
I got my bone marrow biopsy today. Will know in about a week
Liked by Ginger, Volunteer Mentor
@jennifer208, I am thinking about you today. And I hope that this is the beginning of finding answers and a treatment plan.
@jennifer208 Gently distract yourself while waiting. It can be so hard, can't it? What do you have in your plans for this week of waiting? Anything interesting or fun?
Liked by Rosemary, Volunteer Mentor
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor
Ok sorry I haven't checked in. So my bone marrow biopsy came back negative. Great news. Bad thing is now we will probably never know why I got this. But I think I told everyone I was flying to Atlanta Georgia to see a doctor there about a clinical study trial. Well. Good news I got accepted. So next month I fly to Atlanta Georgia again to get my first treatment. I'm so excited. I really like this doctor and I believe it's going to be great. Now with that being said. All that's happening right now I'm praying they don't ground all flights. I need this.
Liked by JK, Alumna Mentor, Ginger, Volunteer Mentor
@jennifer208 That is great news. I hope that things can proceed and that you will be able to go to Atlanta to participate in the clinical study. At this point, who knows what safety practices we will need to be practicing then, but if there are flight restrictions, is it possible that the clinical trial will be postponed?
I don't know. But I hope not.
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
I finished another 2 rounds of Rituxin last week and feel so much better. Function is up from 17 to 24. Call your insurance company and push for this if you can! My insurance approved after recommendation from Mayo.
Just curious about the cookbook you ordered. I have been experimenting with various recipes…there is a recipe out there for "nomato" sauce which is a decent alternative for tomatoes. Have you discovered any great recipes that are kidney healthy?
Hope you are doing well!
Sorry haven't been on here for a while. But since I can't fly right now they expedited my medicine here to Idaho. I started my injections last Monday. I do them twice a week Monday and Thursday. Today was my third injection. I also take a pill in the morning and one in the evening every day. I will keep you guys posted
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Teresa, Volunteer Mentor
my sister in law was just diagnosed with this. Can you share name of Dr or hospital that has the clinical trials helping you? I appreciate any information you can share on a dr she can turn to
Hello @va63 and welcome to Mayo Clinic Connect. I understand you are reaching out to provide some support to your sister-in-law with her diagnosis. Perhaps members like @jennifer208 and @vhussey29 would have some additional information they could share to aid in your search for where to start.
Is your SIL happy with her care following diagnosis or is she looking for other options?
she isn't happy with lack of MD support and is looking for options. I shared this link with her and her daughter yesterday. They apparently heard of the trial and looking into it
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