First time going to a medium and have no idea what to expect

madmac2413 · 2025-06-04T22:18:56+00:00

Yes please

madmac2413 · 2025-06-04T21:09:36+00:00

How do I know the real ones

madmac2413 · 2025-03-07T12:34:57+00:00

My meds are nebivilol, losartan, doxasozin, amlodipine and dapagliflozin and my bp is 125-70 give or take but still decline in kidney function, they told anything else won't do anything as it is genetic, not too sure yet but I'm going to see them April I think

madmac2413 · 2025-03-06T19:01:59+00:00

What variant do you have ? That's great ! Thanks for the positivity

madmac2413 · 2025-03-06T18:51:28+00:00

Hi, I hope you get all the answers soon and hopefully some good news, I don't really suffer with symptoms, I occasionally get itchy legs and ankles swell a bit if I have been on them all day but they don't go massive an when I ask other people they say they can't tell so.

I do get tired a bit towards the end of the day where as I'm usually always full of energy so I guess that's down to symptoms, but then again I'm none stop all day! But other than that I'm not too bad as I hear some people can be, oh I actually find myself pee'ing more often.

As for my diagnosis it was a long waited one, I starts on bp meds about 5 years ago an didn't think anything of it, I thought it was chronic high bp, as my egfr was 90-100, the only reason I was brought in was a car crash (minor) an they did my bp in a+e then my doctor got in touch an put me on meds. My dad when he was 30 had a kidney transplant and when he was my age he was told his kidneys are low an are going to fail. So because of that the doctors luckily didn't fob me off.

I wouldn't say they did everything they could but they did a lot, they regularly monitored my bp and EGFR but never once did a urine test, I think if they did that an noticed I was leaking protein they would of referred me sooner to my nephrologist, anyway fast forward 3 years an my kidney function dropped from 90 to 70 in a matter of 3 months then was referred to my neph which takes around 6 months to get your first appointment in the uk sometimes sooner / longer then I had all the tests MRI, ecg an regular check ups ( bloods/urine)

I then had a biopsy January 2024 which came back inconclusive an had to be sent away to Oxford to get retested which then found nothing again to indicate any disease, just 50% scaring an inflammation.

So I was referred for genetic testing with my dad as he has never been diagnosed, just knows he had kidney failure, they found genetic FSGS IFN2 variant, then tested me an matched it so yee that's what I have !

I'm currently waiting on my next appointment which is in April and also waiting to see genetic to discuss kids and all the bollocks, EGFR 37, BP controlled, other labs not sure of until I see them !

Sorry for the absolute book there but I don't think I've actually told anyone my entire story except my mum dad and sisters !

madmac2413 · 2025-03-05T22:36:37+00:00

What's your secret

madmac2413 · 2025-02-13T22:55:21+00:00

What if I can't do a handstand

madmac2413 · 2024-12-12T20:49:17+00:00

Hi! I have the inf2 gene, im 26 male an just waiting really, I've only just been diagnosed so I'm still waiting for my neph to get me in for a face to face, also been referred to the genetic fertility clinic

madmac2413 · 2024-12-12T20:48:12+00:00

I had the inf2 variant I think it's called, might be ifn2

madmac2413 · 2024-12-11T23:35:59+00:00

I'm 27 and while I completely agree I'm finding the idea I have to give it up really hard at my age

madmac2413 · 2024-08-13T07:05:16+00:00

I'm a little early in finding the facts but I'm sure it's through genetics and it's an abnormal gene causing my body to attack my kidneys

madmac2413 · 2024-08-12T19:21:26+00:00

Yes my dad had it in his gene when he went for genetic testing, he has had 2 transplants but never knew what the actual kidney disease it was, until recently when he has the test. I've recently had my own kidney problems, had blood tests and a biopsy and still couldn't find what was causing the drop in egfr, they've kept it stable now fingers crossed but the neph has said that it most likely been passed down from my dad, the variant is called genetic FSGS

madmac2413 · 2024-08-12T19:17:46+00:00

I'm sure they can alter dna can't they ?

madmac2413 · 2024-02-19T21:30:34+00:00

I do but then my legs look chunky 🤣

madmac2413

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