[graham-cParticipant]

I am posting in the MGUS section as that was confirmed to me as my current diagnosis in answer to a direct question. Having been MGUS for nearly 10 years previously, my current results appear to suggest something more and when I was put on a less rigorous review regime I was concerned and my normal relaxed attitude changed. My declining eGFR alone warrants closer scrutiny and it may already fall within NICE guidelines for referral to Nephrology. I’ll check that. If it falls to 29 or below then I’ll go for referral through my GP if necessary.

At my last appointment they didn’t even perform a Light Chain test though they should have. Now I have to serve Leicester Royal Infirmary with an SRA to get my test result.

My next blood test results are due in April and I would suspect LCDD (Light Chain Deposition Disease). My principle problem is getting hold of results.

[graham-cParticipant]

I have issued an SRA in respect of the missing blood test results and, on checking historic results, I find that my eGFR results do fall within the NICE parameters for referral to Nephrology. Having said that I’m not seeking drama, so I will await the next figures in April before I decide what to do. I hope that I can discuss this in a mature manner with Haematology.

[graham-cParticipant]

For 10 years I have been very relaxed about MGUS. In fact when I was in hospital just before Christmas, the year before last, I didn’t even mention it as one of my significant ailments.

Recent results and the realisation that Haematology aren’t following NICE guidelines for referral to Nephrology have caused me to question what is going on.

Like most people I imagine we don’t question what the hospital does, but I regret that I have major concerns. At my last appointment, along with the usual forms for my next blood test, two injection phials were included which I imagine are to be administered by the nurse when she takes the usual blood specimens.

To my astonishment I find that one is labelled Heparin. This was not even mentioned,let alone explained or its significance or risks discussed. It is an anti-coagulant I discover. By the by I have recently found that wounds on my legs take months to heal. I have not referred it to anyone but I would have if I had known I was being medicated to make the matter worse. It is a serious medication and I should be alerted to its prescription.

My next appointment is set to be by phone which, by experience, never happens, but it is likely to be quite challenging.

[graham-cParticipant]

I am not a happy ‘bunny”. I now discover that Heparin is contra-indicated for anyone taking Amlodipine. I won’t therefore be taking this injection. It is simply unethical to hand injections to a patient in a ‘goodie’ bag without mention or explanation. I thought they were extra phials for different blood tests.

Heparin is an anti-coagulant and frequently used in the treatment of CKD (chronic kidney disease). One injection may provide temporary relief but has no long term benefit.

If my condition is MGUS, as Haematology insist, then why are they treating my kidney and not referring me to Nephrology as they should ?

I will be pursuing this matter.

[graham-cParticipant]

A little more research reveals that amlodipine and ramipril are both contra-indicated for use with heparin and these are prescribed for me for hypertension (high blood pressure). That being the case I won’t be handing the heparin to the nurse to inject but I will raise my concerns with her.

A one off injection of heparin has no therapeutic benefit.

Next I should be getting my light chain figure and ratio from my Subject Access Request.

[graham-cParticipant]

The more I discover about Hiparin the more shocked I am. I have MGUS which was stated in answer to a direct question from me. This does not require treatment.

The Hiparin syringe was included with the next blood test forms without explanation. I didn’t even know it was a syringe, let alone what it was or what it was for.

My recent eGFR results fall within NICE guidelines for referral to Nephrology, so that is what I imagine it’s for, but this is not how it should happen.

NHS highlight Heparin as a drug with serious risks and which requires a patient to understand those risks. It even goes as far as to suggest patients wear a wristband pointing out that they have taken it.I won’t go into further detail. The NHS site mentions referral to the CQC.

I don’t want to leave this for a nurse taking my next blood to handle so I’ll go into Haematology this week and point out that I’ll be submitting a complaint. I’ll likely take it further than that.

[graham-cParticipant]

I’ve finally received the missing results from my last blood test and unsurprisingly it would be fine for a first innings Test Match score but not so good otherwise

Serum Free Lambda Chain 697

Serum kappa/lambda ratio 0.02

Interestingly there is a ‘blurb’ included intended to allay any concerns that has the opposite effect.

“Serum free light chain results should always be interpreted in conjunction with other laboratory results and clinical evidence.”

The fact is that my eGFR has declined to an extent that according to NICE guidelines warrants referral to Nephrology, and Haematology appear not to have noticed.

If I accept that my light chains are irrelevant, they are obligated under NICE guidelines to make a referral as they would for any incidental discovery of this nature.

I could wait for my next test results but I think it would be better for me to bring this matter to their attention earlier rather than allowing things to get worse.

[graham-cParticipant]

I am going to write to the Leicester Royal Infirmary directing them to follow the NICE protocol for handling accelerating decrease in eGFR which entails referral to Nephrology based on the figures they have provided. I do not know whether or not they have noticed this but they have not acknowledged it to me.

If it has nothing to do with my light chains (that are bad enough) then my eGFR decrease represents an incidental discovery that should not be ignored, and NICE makes clear the procedure to follow. Nephrology have their own tests and will take account of BP, diabetes and heart disease.

I am also concerned that the adulteration of my blood sample with Hiparin will artificially improve my eGFR, not representing a measure of what actually flows through my veins.

[graham-cParticipant]

Things have advanced dramatically since my last post. Though I am still officially MGUS, my current blood test forms have handwritten notations of ‘amyloidosis.

I have an appointment for Nephrology in early August and I have received a torrent of associated hospital appointments. I had a PET scan last week and that didn’t go according to plan (not my fault).

I have an echo cardiogram and a bone marrow biopsy arranged in short order before I go back to LRI Haematology late in August.

My latest results were

eGFR 45
SFLLC 950
Ratio 0.01
PP 10.0

[graham-cParticipant]

I finally received the diagnosis last Thursday that I was expecting – I have ‘AL Amyloidosis’ and I will therefore transfer this thread to the Amyloidosis section to keep things tidy.

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