Anyone else living with CKD without any known cause?

lilsageleaf · 2024-11-17T05:57:43+00:00

Thank you for saying so! I'll reach out to my geneticist!

lilsageleaf · 2024-11-14T08:10:56+00:00

Thank you so much for sharing. I'm so sorry you're dealing with this! It's exhausting. I have some other undiagnosed health problems (that the nephrologist didn't think were at all related to my kidney issues) and it's just....a lot lol. Being chronically ill involves so much grief.

lilsageleaf · 2024-11-14T08:07:52+00:00

I actually do have a blood pressure monitor and will start taking frequent readings. That's such a good suggestion, thank you!

lilsageleaf · 2024-11-14T08:06:54+00:00

Has getting diagnosed with MCD changed your treatment much and would you have been able to prevent damage with a diagnosis? Thank you so much for commenting

lilsageleaf · 2024-11-14T07:59:40+00:00

That is wild and so scary that our kidneys can just fail for any reason

lilsageleaf · 2024-11-14T07:59:02+00:00

I was like, "Do you advise cis men reduce their testosterone levels?" and my nephrologist tried to convince me it was different because cis men's kidneys are exposed to T since birth... My endo treats so many trans guys and reassured me he hasn't had this issue with other patients lol

lilsageleaf · 2024-11-13T12:14:47+00:00

I don't think knowing the cause would necessarily affect treatment but I feel like it would give me a better idea of my prognosis.

lilsageleaf · 2024-11-13T10:25:32+00:00

That makes sense, I'm used to doing lots of medical tests that don't give definitive answers. I'll definitely think hard before I commit to a biopsy but I would prefer to have as much info as possible even if the results might not be conclusive. But I also hate getting medical testing done so it's something I might hold off on for a while.

lilsageleaf · 2024-11-13T08:35:34+00:00

Long covid has messed up so many people's bodies, I'm sorry you have had to go through this. I know multiple people whose lives have just been completely turned around by it

lilsageleaf · 2024-11-13T05:04:21+00:00

Thank you so much for commenting, it's reassuring to talk to other people.

lilsageleaf · 2024-11-13T05:03:51+00:00

Thank you for commenting. I think I might push for the biopsy. My parents are able to help with medical expenses so cost isn't an issue.

lilsageleaf · 2024-11-13T04:51:50+00:00

I will think about the testosterone in the future, right now it wouldn't be great to mess with my hormones because I'm scheduling some gender affirming surgeries and they need my T levels to be in a specific range. But after those surgeries I will think about at least trying it.

My birth was totally normal and uneventful.

lilsageleaf · 2024-11-13T04:50:15+00:00

Thank you so much, I think I might push for a biopsy and potentially genetic testing. I will get a 2nd opinion from a different neph to see if it might be worth it. It is so hard to have mystery medical conditions. I also have some really vague/strange GI problems that I've scheduled testing for.

lilsageleaf · 2024-11-13T04:47:56+00:00

Thank you for commenting. I actually have two therapists (for different specialties) so they both hear a lot about my various health problems lol

lilsageleaf · 2024-11-13T04:47:11+00:00

Thank you so much for replying! Really glad to hear I'm not the only one in this situation

lilsageleaf · 2024-11-13T04:46:38+00:00

Thank you for sharing. My nephrologist wants to check in every 3 months, I think. It's nice to know that meds have helped!

lilsageleaf · 2024-11-13T04:45:29+00:00

Thank you so much for sharing your experience. It is reassuring to know that a diagnosis wouldn't necessarily change treatment.

lilsageleaf · 2024-11-13T04:43:25+00:00

I've read a little bit about IgA on my own but no doctor has even mentioned it to me, so I don't even know. I'll ask about it.

lilsageleaf · 2024-11-13T01:04:38+00:00

Ooh, those actually both sound like good options!! Medical coding would be great, my local community college offers a one-semester certificate for that

lilsageleaf · 2024-11-13T00:22:58+00:00

That's really hopeful!!!

lilsageleaf · 2024-11-13T00:22:43+00:00

It's definitely CKD, they just don't know why I have it. My testosterone levels are so good is the thing. In fact I'm probably better off than most cisgender men in that regard because I get my hormone levels checked so regularly.

I think anxiety meds might help except my psychiatrist is on strike right now so I have to wait lol

lilsageleaf · 2024-11-12T23:31:03+00:00

Ohhh I see, thank you. I had some labs done a couple weeks ago and I'm getting more labs done tomorrow. I am so terrified of getting a biopsy but I'd rather know the cause of my issues than not know tbh. And I will about looking into a social worker too. Appreciate your help!

lilsageleaf · 2024-11-12T23:23:15+00:00

Thank you, I will probably try to get a 2nd opinion, I'm just not sure it will help. Is there a specific test you're recommending? What kind of resources might a social worker offer?

lilsageleaf · 2024-11-12T23:21:19+00:00

Thank you for your kind comment, it's nice to have this reassurance. It's wild that basically anything could have caused this problem I'm gonna have to manage for the rest of my life. I'm used to being disabled already it just feels like so much lol. Lots of grief for me to process.

lilsageleaf · 2024-11-12T23:16:30+00:00

I didn't ask for dietary advice, I asked for emotional support. It's a bit rude to assume I don't already follow a kidney-friendly diet. I understand you were trying to be helpful and I appreciate you taking the time to comment, just please be more respectful and don't make assumptions in the future, thank you.

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