Hi everyone, my name is Angie, l’m 61 and have been living with CKD for 50 years. About 35 years ago l was told my CKD was a result of Alport Syndrome (Alport syndrome is a rare genetic condition that primarily damages the tiny filtering units within the kidneys. My egfr is 16 and l’m being put forward for a kidney transplant before l need dialysis. Although l have lived with CKD for 50 years my thoughts are all over the place. It is scary to think l need to have a transplant. Is there anyone else who has been diagnosed with Alport Syndrome on here?
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Hi Angie, I have Alport’s too. Diagnosed about 15 years ago, quite by accident. I got referred to a Nephrologist about blood in my urine and he noticed I’d lost my hearing. My eGFR has been dropping since last year and is now at 20 and the CKD symptoms are really showing.
They say that eGFR drops more rapidly when it gets to the low 20’s, is this what happened to you?
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Good morning, l was also diagnosed with kidney problems by chance too after an accident when l was 11, whereby they discovered protein/blood in my urine, which then resulted in many tests/biopsies before finally being told l had Alport’s. I lost a brother to Alport’s when he was 28.
Over the last 14 months my eGFR has dropped from 21 to 16 which has freaked me out a bit but my Nephrologist is not concerned at the moment as she says it’s not always about the figures.
l am also struggling with the CKD symptoms, restless legs, joint pain, very low energy levels, and nausea. l also wear hearing aids. What symptoms are you experiencing?
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Hi Angie,
Same symptoms, tired all the time but struggle sleeping at night is the most annoying bit.
What are your experiences of your Nephrologist? Mine is OK but more Reactive than Proactive. I’m seeing her on Wednesday and have prepped a list of questions for her, up till now, when I’ve told her when I feel rough all she says is “No, No, your Kidney function is 20%, you’re fine”. Now I’ve thought about it, she is quite dismissive.
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Hi LandroverReg,
Yes, the sleeping is rough, l get restless legs and leg cramps and it doesn’t help when l need to go to the toilet about 4 or 5 times during the night.
My Nephrologist has mainly been reactive too but since my eGFR is at 16 she has now drawn up a plan of action for a pre-emptive transplant, however, l do find her sometimes dismissive when l talk about my symptoms. I do have a renal nurse assigned to me and she is amazing with explaining my test results and answering any questions l may have.
I suppose everyone’s symptoms may be different to various degrees depending on their eGFR but regardless of your eGFR your Nephrologist shouldn’t be dismissive of your symptoms and should be working towards helping you alleviate some of your symptoms.