CKD Patients - any knowledge helpful!

[Meagain24]

Hi

This isn’t about me but about a family member - would appreciate any knowledge/personal experience. I know no one has the exact answer but some info will help whilst the phones are closed for the evening!

They have a low EGFR and usually seen every 2 months. They were due to have an appt today on the phone but no one called despite trying to chase this. This evening received an appointment for 6 weeks time. This has led me to think/worry that there numbers have dropped even further and now they need to be seen 6 weekly.

I know it may depend on hospital but does anyone know if receptionists/admin team just automatically book next appointments based on patients numbers? Just really trying to understand if they’ve just booked that in because they missed today’s or because numbers are probably a lot lower

thanks!

I'd say the consultant was ill and the appointment cancelled and this is the next available non urgent appointment. And poor communication in letting your relative know.

Have they had bloods checked ? I am stage 4 and go every 3 months so I wouldn’t be too concerned if they don’t appear to be more unwell but your GP would be able to take bloods sooner to reassure

I’d say that was just the next available appointment. My GFR is around 16/17 and I’m seen every 2/3 months. If they’re concerned get them to ring the secretaries or the appointments line and ask for an explanation.

Not a CKD patient - but my dad recently got sent an appointment for the very next day a week after he'd had a CT. He was understandably panicking but it was actually to tell him that there was nothing of concern on the CT. It was just the next appointment they had free.

I’d say this too. Does your relative have access to Patients Know Best where they can log in and see their blood test results?

If it had dropped more than they expected it would be repeated earlier than 6 weeks. I think it's just when the next appointment is. Remember in 6 weeks summer holidays will be starting so maybe they are trying to cope with a consultant holiday too.

I would interpret that as being the next available appointment.

Anything more urgent they would be squeezed in earlier as an extra.

@zebrapig it was just a rescheduled appt - they asked about the results & it had changed one point. Does yours regularly decline at 16/17? Theirs declines every single time by a point or 2, can’t see to do anything to stabilise it

Thanks so much everyone - you were all right it was rescheduled and egfr hadn’t changed too much!

That’s great to hear.

My GFR declines regularly, it’s to be expected with my condition (PKD). It was 17 in January, 15 in April. It might go up by 1/2 but then it will drop again, the overall trend is down.
I’m in the middle of transplant testing, with hope of having a living donor transplant before I need dialysis (might be another couple of years before that, all being well).
It’s worth knowing everyone’s journey is different, I know of someone with the same condition who has much higher function but has had lots of infections, resulting in her being quite poorly and in hospital. I’ve never really had that, although I’ve been very anaemic and needed an iron infusion. There’s lots of support groups if that’s something they might be interested in.