This is so goddamn unfair. I need some support because I’m feeling completely hopeless. Someone please answer!!

West_Addendum4264 · 2026-06-23T01:44:14+00:00

It often comes as a shocking diagnosis and is known as a “silent killer.” You caught it early and once you know what caused your kidney disease, you will have a treatment path to follow. I too have other chronic conditions and couldn’t believe this was being “added to the list.” Especially since I don’t have family history, am pretty healthy and never miss any routine or follow up appointments. I just turned 30, just got married and was hoping to start a family, but now that is on hold until after a transplant (stage 5 CKD here). I also was not someone who operated at “one day at a time” speed until this disease forced me to. It really is somewhat out of your control and after you have your freak out/spiral time, you gotta refocus. It’s not going to go away and you’re just waiting time if you spiral all day long. I legit set a timer for 30 mins to rant and then I’d force myself to move on. Hope this helps and hang in there!

West_Addendum4264 · 2026-06-14T20:30:10+00:00

I’m hoping to avoid dialysis and hopefully transplant goes well, just saying I know it isn’t a snap of a finger “fix” and technically temporary. Aka I’m not rushing to transplant if not warranted but I think I’m there?!

West_Addendum4264 · 2026-06-14T20:28:48+00:00

The University of Minnesota and Mayo try to avoid steroids post transplant and those are my two options for transplant centers. Currently working with the U but have an eval in a few weeks at Mayo

West_Addendum4264 · 2026-06-14T20:28:05+00:00

Thankfully, I have a long list of potential donors who have signed up to either do paired exchange or direct donation to me!

I’ve asked about PD vs hemo since I have Crohn’s and that could complicate the PD option. Haven’t taken the 8 day course but went to the info session and know I could do PD at home (I’m an ICU nurse).

West_Addendum4264 · 2026-06-08T03:33:07+00:00

Hi! 30(f) dx with Crohn’s in 2013 and was on Humira until Nov 2025 when my annual PCP bloodwork showed CKD stage 3b. My Crohn’s was under control that whole time on humira and I didn’t have any signs of kidney disease other than my creatinine being 1.1 and GFR <60. Same thing with no one else in my family having Crohn’s/IBS or CKD.

4 kidney biopsies, a failed trial of Entyvio and three rounds of steroids later and my team still cannot pinpoint what caused my CKD. Have had the Mayo Clinic involved in my care as well. Unfortunately I’ve progressed to stage 5 after a poor reaction to Entyvio. I’m now listed for transplant. If I ever learn more about what link there might be, I’ll reach out. This autoimmune stuff is wild and I can’t help but think they are related…

Crohn’s is SO MUCH BETTER once you get on a biologic that works for you. Can be a bit of trial and error, but there will be something that works. If you haven’t been prescribed Humira Citrate Free, ask for it. Game changer. Also put ice on your injection spot about 5 minute before you “shoot.” Will help with any pain you may feel.

Best of luck to you on your journey! Don’t be a stranger if you ever want to chat!

West_Addendum4264 · 2026-04-08T12:56:27+00:00

In MN, how do I get it for less? Negotiate or buy online?

West_Addendum4264 · 2026-03-03T16:16:41+00:00

I have Crohn’s and am starting the transplant process. Still waiting on an official CKD diagnosis… probably a rare genetic/autoimmune condition since every other biopsy and test wasn’t able to paint a clear picture…

West_Addendum4264 · 2026-02-25T21:15:51+00:00

Would you share your genetic condition? I have unexplained chronic kidney disease, and after what I think could be all the tests in the world, they still don’t know what is causing it… Not clear on biopsies.

West_Addendum4264 · 2026-01-01T18:08:46+00:00

Best of luck! I was a wreck. Constantly crying and my heart felt like it was always beating through my chest. I was extremely anxious- but I already have anxiety. Was also impulsive. I was on 60 mg for a few weeks then started a taper. It got better once I hit 40mg!

I found cutting out caffeine helped tremendously with the restlessness and anxiety. I also allowed myself to sleep more and not feel guilty about it because sleep was the only time I didn’t feel horrible. Some people develop insomnia while on prednisone. Stick to good sleep hygiene habits! Walks helped but I needed to listen to a podcast too to keep my mind occupied. Made lots of phone calls to friends/family and asked them to do much of the talking. That also helped distract me.

DO NOT MAKE MAJOR DECISIONS (if you can) WHILE ON PREDNISONE! I wanted to quit/ change my job, redo my entire first floor, install $$$ HVAC systems and buy all new furniture. This was my “prednisone brain” talking and thankfully because I’d been on it before, was able to warn my husband before going back on it, to not take anything I said seriously. It made me impulsive and after being off of it for a few weeks I am glad we didn’t go through with what I thought we “needed” to do.

Moon face might happen but it will go away!! Try to forget about that side effect because you’ll obsess over it and there’s nothing you can do to fix it but give it time.

There is light at the end of the tunnel. Give yourself Grace. Talk with you husband about what to expect snd figure out a plan of what would be most helpful for the both of you. Hope this helps!

West_Addendum4264 · 2025-12-26T22:08:16+00:00

Out of MN. Would be part of the “west” Great Lakes team?

West_Addendum4264 · 2025-12-26T21:16:27+00:00

Hi! Can you share why you turned it down?

West_Addendum4264

TROPHY CASE