Amyloidosis

[Amyloid_Leslie]

I am new to this online community.

I was diagnosed with APO-CII amyloidosis which has affected my kidneys by the Mayo Clinic in 2017. It is a very rare form of a very rare disease. I'm interested to know if anyone else in this online community also has this disease.

At this point, I am close to Stage 5 of CKD and just had a catheter inserted so that I can start peritoneal dialysis, probably early in 2020. I am also being considered for a kidney transplant.

Anyone else like me out there?

[Hidden]

Hi and welcome,

I can't help you directly but I can get you started. A couple of days ago there was a post regarding someone's spouse who needed more information on this, which I provided. If you search through the recent posts you'll see the mention of Amyloids in the heading and if you want to contact this person you can from there.

[Amyloid_Leslie in reply to Hidden]

Thank you Mr_Kidney. I did see that post, which prompted me to post myself. I didn't recognize any of the symptoms in the first post, so assume it is a different disease. There are several different types of amyloidosis which attack different organs. Those that attack the heart are most common, and I think the husband might have that kind. The APO-CII are based in the kidneys.

From what I understand, the amyloids are misfolded proteins, which tend to clog up the organs they attack, and prevent them from functioning as they should. My disease was traced back to an inherited genetic factor.

I just spent an hour on the online kidney community and found many interesting comments there . I just ordered "The Plant-Fed Kidneys", which was recommended online. I have been loosely following a CKD diet, but am encouraged to step up my diet game.

I'm very grateful to your (and others online) encouragement!

[Hidden in reply to Amyloid_Leslie]

I'm sorry I couldn't help more. I am scheduled to meet with another group of unique CKD patients tomorrow. I'll ask around about this and see if anyone there has any information and if yes, I'll be back here tomorrow night or the next day to share what I find.

[Hidden]

Well, it's early Saturday morning, and I wanted to let you know, that I just finished a phone call with one of the members of the group I was supposed to meet with today. One of their founding members passed late last night and the group has canceled their meeting for today. Sometime after the funeral, they will reconvene and I'll see if I can bring the questions up about APO-CII at that time.

[Amyloid_Leslie in reply to Hidden]

I’m sorry to hear about their loss. There is no hurry on your part to get back to me.

I should probably let you know that there are very few case studies of APO CII. The Mayo Clinic has published articles based on six or seven cases. They expect more to be diagnosed, now that it has been discovered. So, I don’t think you’ll find many people who know about it. The other more common form of Amyloidosis is called AL. I think it affects about one in every 200,000 people. APO CII is much rarer than that. No treatment or cure for it or, of course for the CKD it causes.

My GFR has gone from 38 to 14 in two years., though I am still feeling good, just tired. I’ll be getting a couple of IV iron treatments in the next few weeks for persistent anemia, which I’m hoping will help my energy level.

Thank you for reaching out. I have a good support system, but it’s good to hear from others on the same CKD path.

[Lianelady]

Hey Leslie I also have a very very rare kidney disease. Its fibrillary glomerulonephritis. This is very similar to the disease you have. Proteins clogging and attacking organs. You can message me!