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After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.
I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results have been increasing but are unremarkable and I find it difficult to believe that they could have increased so much in a short period to be responsible for the eGFR results, but I’ll wait for my October appointment for updates. If I get a Registrar I’ll be gentle with them but unless my eGFR has improved, either they, or my GP, will need to refer me to Urology (under NICE guidelines). I’ve got all my results and details that I can take with me.
As an afterthought I would presume that having a declining eGFR my PP’s/FLC’s will rise simply because they aren’t being cleared from my system so efficiently. It is then a matter of which one is that causal factor and which one the symptom.
This is why I insist on knowing my results. If I hadn’t known them I wouldn’t know the significance of my October appointment and what to ask. If I weren’t already involved with Haematology it would be a straight referral to Urology but, with Haematolgy involved, they had better give their opinion first.
graham-c.
For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was withheld from me then that impacted me badly. It wouldn’t be in anyone’s interests for this to happen again.
My GP should have received my letter and I have quoted the NICE guidelines for treatment of CKD, but I have added that I am happy to ‘hang fire’ until my next results and appointment in October.
http://www.nice.org.uk/guidance/cg182/resources/guidance-chronic-kidney-disease-pdf
The risk as I see it is that if my PP’s/FLC’s haven’t risen significantly they’ll consider that it isn’t their responsibility so my letter puts my GP on notices that if my eGFR has declined again and Haematology aren’t impressed, then it will be up to her.
It does mean that I have control, and I can avoid surprises through something being overlooked . Though my results easily qualify me as CKD Stage 3 I presume that I won’t receive that classification until Urology say so.
It’ll make the October appointment interesting and I’ll know what I need to know and ask. If it’s a Registrar I’ll do it sympathetically.
I do admit to being somewhat conflicted especially as I feel a little peeved that no one appears to have noticed the decline in eGFR
Firstly in the grand scale of myeloma, an eGFR of 54 isn’t at all spectacular or threatening and the incredibly metronomic decrease is steady but not obviously pointing to an imminent crisis.
Though, on the other hand it does qualify under NICE guidelines as Stage 3a CKD and in spite of the progression appearing steady, it does fall within the definition of accelerated progression and four continuous declining results suggest a continuous process. An upturn in eGFR in October would take the edge off my concerns, but what happens if my PP’s/FLC’s don’t explain the situation ? Presumably then my GP has to make the referral to Urology.
If it weren’t for Haematology my GP would be required to bounce me off to Urology immediately but it makes sense to discover whether or not Myeloma is the underlying cause, because that would be what Urology would be looking to do themselves. I just hope that Haematology have noticed otherwise I’ll be looking with a squinty eye. With my medical history it could be something unassociated with Myeloma which would be a blessing I don’t need. I did have kidney cancer, but kidney to kidney isn’t a usual progression so that’s not my primary concern.
As much as it will torment me my best option is to get a favourable eGFR and for that I must wait.
In the meantime I have asked my GP to confirm that I have been placed on the surgery’s CKD Register as required by the ‘GP contract Quality and Outcomes Framework (QOF)’.
http://www.britishrenal.org/BritishRenalSociety/files/e1/e182721f-77af-4386-b7e3-7f8b777c8b12.pdf
I’m only doing that because 1. my results qualify 2. there is a possibility that my EGFR reduction isn’t Myeloma related 3. things that should have been done haven’t been done in the past and 4. it puts testing and treatment into a set pathway.
I may ruffle feathers, but i’m running short of kidneys.
The fact is that I should have been referred to Nephrology before now due to my declining kidney function because I fall well within the NHS and NICE referral guidelines.
However, and this is a good reason for knowing your results and the implications, my current results don’t put me at any immediate risk. I know that my GP won’t refer me without my prompting and I did read that eGFR results aren’t flagged up in GP records when they are abnormal. On the down side, in the past 15 months my results have shown a relentless but steady decline and, in that same period, I have lost a third of my kidney function, which I read is not a good sign.
The eGFR result at my Haematology appointment last week was a repeat of my previous result at 54, being my lowest score so far. On its own it isn’t a problem but, because my results never improve, the risk is that there is something doing my kidneys harm. Haematology didn’t think it was my FLC’s which can be nephro-toxic.
On balance I think I’d better ask my GP to refer me to Nephrology to give them the opportunity to discover if there is something affecting my kidneys that they can do something about.
I would say that the Myeloma Clinic at Leicester looks to be under tremendous pressure with standing room only. The doctor was examining my notes as he spoke and some of the things he said didn’t make sense but, because I had a good understanding of my illness, it didn’t concern me. He mentioned me having a bone marrow biopsy, but I had had one initially and didn’t think my figures merited another one. He also seemed critical that I was seeing them at too frequent an interval which didn’t make sense either as I don’t choose it and I thought I was being seen at the least frequent interval possible. To my further confusion he has arranged for me to have 2 weekly blood tests and an appointment at a ‘nurse led’ clinic in a month.
Having ‘nurse led’ clinics sounds like a good idea for those at the MGUS stage
graham-c.
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