Team Talk

[Hily]

My Nephrologist listens to me but doesn't tell me anything. Just see you in 2 months-that never happens, 5 months if I am lucky. GFR is 14 now, seems steady.

I know he and others? renal nurses, dietician, other Nephs and jo bloggs, Uncle John Cobbley and all, meet up and talk about me maybe? But I am not part of these talks, but I hear nothing either.

God only knows what they say. How can I get information?

My Neph does not copy me in on letters to my GP although I have asked several times, and my GP's do not follow up with any action.

Any ideas please?

[bumblebee_tuna]

GFR 14, and the Nephrologist says nothing?? Are you in the US

At this point you should already have a discussion regarding dialysis. You should be already on a transplant list if you are a candidate.

[Hily in reply to bumblebee_tuna]

No. In the UK. In a bad health area.

[Ziggydoodah in reply to Hily]

This is not acceptable and you know it. This is the time you should be informed about everything that is going on. Thus is also the time you start kicking a few backsides.Have you got the app PKB..Patient Knows Best, to see blood results??? If not register for it now.

What kind of dialysis are they talking about? Are you getting a fistula? Are you a candidate for a transplant?

My consultant passed me over to the dialysis cosultant at 11 gfr. Then I had to see him once a month, then every two weeks before I started dialysis. I also got blood tests every 2 weeks. Right now you need your medical more than ever

You need to make informed choices. You need to realise, you need to start fighting for your health and do it NOW. I thought the NHS was bad up here but compared to this, it's First Class. So Monday get on the phone and get appointments with your GP and Consultant. Hopefully you start getting answers or I will be coming down myself and fighting on your behalf amd you don't want that 🤣🤣🤣🤣...Xx

[PeaB4YouGo]

I'm going to make a suggestion, but only because I have NO idea how things work in the UK. Take advantage of your Patient Portal, if one is available. I see my labs, visit notes and lots of other stuff just by going on the website.

Is this a thing in England? I'm so used to things here, in the US, that I think things like a patient portal is essential, if not required.

Also, read up, and decide whether PD or HD is for you. The type of dialysis you choose (hopefully, WITH your nephrologist) will determine your course of action.

[Hily in reply to PeaB4YouGo]

I am in Wales. We have Patients knows Best now. This gives us the blood results but does not explain what they really mean. Things are not always asked for/reported.

As I have had abdominal surgery, I can only have AV. This caused the dehydration that damaged the kidneys.

I am exhausted. All I want to do is sleep.