Aggressive IGA neuropathy

[Lbw62]

Hi all, on April 13, 2018 my daughter was diagnosed with an aggressive form of IGA. I started the donor process and was was ruled out due to red blood cells and protein on my 24 hour urine collections; so I'm not a quick fix for her. 😢

I'm very interested in connecting with others with a similar diagnosis or family members or care givers of those with IGA in end stage renal failure. My daughter is 27 and was getting her life started after dealing with Crohn's disease for 8 years. On April 13, 2018 her creatine was 15, BUN was 131 and her GFR was 3. She's holding her own but is out of work due to all the medications, hospitalization a due to medication reactions, and severe anemia which has resulted in multiple blood transfusions.

We're trying to remain positive and be thankful for each day we have but it is pretty hard facing the statics on aggressive IGA (58% of IGA patients need another kidney aged 5 years as the disease comes back). This is so disheartening! My daughter researched the record holder who lives in Finlnd and has had 7 kidney transplants. As a parent it's hard to face kidney disease but even harder to think of your child's life in 5 year increments.

Anyone out there in our boat willing to chat I would welcome it.

THANKS

[coaching]

Hi there,You are doing the right thing, being supportive and staying positive. Having a supportive and understanding family around is what your daughter needs. I know it must be very hard for you to see her go through this and you wish you could switch places. I was diagnosed with ESRF at 17 and that was 26 years ago. Had I not had a strong positive and supportive family I wouldn't have made it this far.

Hope that helps.

Coaching

[Lbw62 in reply to coaching]

Thank you for the pep talk! Do you have IGA neuropathy?

[coaching in reply to Lbw62]

No, the cause of my renal failure was never established unfortunately.

[Zazzel]

I have sent you a private message as I have a lot of information to share.

[Lbw62 in reply to Zazzel]

Thank you but I'm not sure how to find your private message.

[Zazzel in reply to Lbw62]

I got your message. So now you just need to look at the top left of the screen. Click on the Chat icon and you will see both my message to you as well as your message to me.

[Court422]

Hi there - I also have IGANephropathy & Crohns Disease - I'm so sorry your daughter is struggling. I'm 46 and have been struggling with Crohn's disease for 20 years and just got the IGA Nephr diagnosis a year ago... I'm holding at 28% kidney function and hoping I can maintain it as long as possible. Don't really have great advice - except drawing & art has helped me pass a lot of TIME!! And the mental battle might be as hard as the physical battle. Hang in there...be resilient. Good luck to you....

[Lbw62 in reply to Court422]

Thank you! Wishing you the best!!!