Diagnosed two years ago with CKD stage 3; kidney function fluctuates from time to time but GP says it’s acceptable.
I don’t feel unwell at all really, I drink plenty of liquids, eat sensibly and try to follow the plethora of ‘good advice’ out there.
Thing is, trying to keep the balance between things I like and what is good isn’t always easy e.g I eat plenty of fruit and veg but can’t eat bananas…I like salads but I’m told it’s difficult to digest so I shouldn’t have it…is that true?
Hi I have just found out by chance that I have stage 3 code which apparently i have had for 3 years. I have been angry but now a bit bewildered so have been trying to research it and come across this forum which seems really helpful. I still need more info about food but it seems once you know foods which contain potassium it’s a bit easier.
Hi!….i was diagnosed officially 4-5 months ago 3A….but was alerted to a problem 18 months prior…my doctor told me to drink more water 1 and a half litres per day because a marker highlighted my kidneys, that’s all he said….over the next 18 months I smoked ganja, vaped, roll ups, fry ups, McDonalds, cakes, everything! But also drank more!….my efgr count went from 52 up to 60, then went back down to 52 over a four month period…that’s when I got a call to tell me that I have ckd 3A…..can someone explain how I went from 52 to 60 whilst smoking 5 joints per day?? totally confused…..
Hi @Jen1! Welcome to the forum. I really hope you find this a useful space to either connect with others or find information you’re looking for. How long have you been at stage 4?
I did…..the doctor said I had such mild ckd probably age related….i asked for a blood test every six months, they said no, I asked for a nephrologist, they said no…..I said can I still smoke a bit of ganja and that’s when he said I have it so mild, don’t worry…….i’m not diabetic and don’t have high blood pressure……I asked for an X-ray or scan, they said no to that also…..
Hi I am Kevin, I’m 32, I was diagnosed with primary IgA Nephropathy (confirmed with a renal biopsy) with CKD Stage 2 towards the end of 2021 at 27. I am a Biomedical Scientist and this diagnosis has affected both my personal and professional life. My kidney function continuously declined from egfr 60 since diagnosis each year, but has seemed to have stablised around egfr 23 last year following the increase to the maximum dosage of ramipril and dapagliflozin. This was the first time since diagnosis that my egfr didn’t drop.
Before that, I was advised by my doctor that if I didn’t stabilise, I would need to prepare to be transferred to the Advanced Kidney Care Clinic for closer monitoring and initiate dialysis and transplant workup.
I become exhausted more easily, get occasional episodes of shortness of breath and gout. Occupational Health are currently monitoring symptoms every 8 weeks to assess ongoing suitability for shift work and to discuss any reasonable adjustments. This could change at any point and change my career trajectory which may have personal finance implications.
I’m still waiting for my nephrology follow up but they have a backlog so my last appointment was a year ago (I think its normally every 3 months for the current CKD staging?). My GP has agreed to review my kidney function every 3 months because of this.
Managing and altering diet was difficult at first because I didn’t know where to begin but, my dietitian has helped a lot. Sometimes it is demotivating to still see the occasional raised potassium. But I have only had one critically raised potassium episode that required a hospital visit for treatment.
Also navigating the daily pill burden and remembering to take all of my prescribed medications remains a constant, exhausting challenge.
So not sure what to do. Do I need a second opinion?
I have stressed so much about the lack of treatment when the tumour/cyst is most likely cancerous! Monitoring in 5 months is too long a time to leave a Bozniak 4 free range!
If something doesn’t feel right to you, it’s certainly ok to ask more questions or seek a second opinion for reassurance. Hopefully others here who’ve been in a similar situation can share their experiences too
Thank you for sharing - it’s sounds like you’ve been through so much both physically and mentally. Have you been receiving support from your workplace?
