[relativeParticipant]

I’ve been reading a lot about various people with kidney failure and MM.

Everyone with under 20 of kidney function appears to be undergoing dialysis. I’ve been reading up on Myeloma Beacon site and it talks about time being important.

I have a family member who is currently in Canterbury with MM. They have kidney function of 12/13 for the last week. This was caused due to infection and blood pressure dropping. Chemo was stopped but they don’t seem to be doing anything other than waiting re the kidneys. At the moment they are limited to 1.5 litres per day.

Has anyone else experienced waiting rather than treating? The treatment has been on and off and I’m wondering if I should look at transferring to somewhere with more knowledge.

The MM type is light chain

[rebeccaRParticipant]

Hi, I was initially admitted with 5% kidney function and light chain myloema put on fluids and dex/velcade which raised it to 12% quickly then after 2/3 months I was at the dizzy heights of 16 function and told not to expect anymore improvement. Throughout this dialysis was never mentioned and I was subsequently told that as I could pee ok the renal dept. were on a wait and watch – I was told that if my kidneys started shutting down i.e. could not produce pee then dialysis would have been instigated but as I could drink a lot and pee a lot it wasn’t necessary. I believe in the Uk dialysis is normally instigated at 18 gfr but then MM and everything about it is not normal. I am currently at 28 gfr so I did improve over time ( 1yr)which has surprised them. I have recently had an SCT at Leeds and queried with them at my consult about not being put on dialysis initially due to such low gfr and they said my hospital had, in hindsight, done the best thing as they did improve. I am not sure but I think if you have a dialysis for any length of time it may make your kidneys less susceptible to improving. I suspect the kidney drop is only temporary until your relative feels better – mine dropped after SCT when I had an infection and once it was over it went back to normal – well my normal anyway. From what I’ve gleaned about dialysis its something I want to avoid at all costs. I would also add that with a grf of 16 I was still managing to play tennis/exercise and lead a normal life ( again as normal as it gets whilst on chemo!) but got tired at night and BP rose at night also – this could have equally been the chemo as the kidneys. I was given velcade as first line treatment as it is kidney friendly and at the time they didn’t think I’d get to SCT with my kidneys.
Regards,
Rebecca

[relativeParticipant]

My relative isn’t allowed to drink plenty, they are being restricted to 1.5 litres per day. At present still on renal ward admitted with no idea how long will stay. Dex/Velcade about to start in next few days. At what stage were you discharged? Kidney drop was due to starved kidneys when BP dropped due to infection.

[rebeccaRParticipant]

I was admitted mid November to a general ward – they couldn’t understand what had happened – they thought I had AIDS at one point! then 1 night as my kidneys were decreasing I was told I was going to the Renal centre at another hospital but then the haematologist got involved and I was duly diagnosed. I was in hospital for about 2 weeks on the oncology ward – I was severely ill and severely anaemic at diagnosis but I guess as they saw my kidneys improve a little and stabilise I went home returning for my treatment on a weekly basis. At this point we were shell shocked and knew very little otherwise I would have been very alarmed going home with such a low kidney function but I didn’t know any better and I guess as they weren’t treating my kidneys in hospital that I may as well be at home? Can’t say how I was treated makes sense when comparing to literature but I think it was the right decision. I believe liquid will be restricted to put less strain on the kidneys and make sure he/she doesn’t start swelling etc due to low kidney function – I did an input/output chart each day — even after discharge – I was pretty much balanced.
Rebecca

[graham-cParticipant]

Like you ‘relative’ I am aware of a GFR of 20 being a point at which dialysis becomes a potential outcome and though I use these snippets of information as a guide to when I must ask questions (being a FLC sufferer too) they aren’t necessarily fixed determinants of treatment because of the complexities of Myeloma, its treatment and health priorities.

The important fact is that your relative is in hospital and can be monitored and treated in a different manner. I suspect, but cannot know, that his doctors are trying to give his kidneys the chance to recover on their own. Balancing treatment priorities and what’s in the patients best interests are a matter of judgement and experience and it would be best f you raise any concerns with the medical team looking after him. I suspect that some courses of treatment may be a matter of judgement and you could raise your concern by asking ‘What are the drawbacks to starting dialysis now ?’

I do suspect that there is a good reason for their current course of action and I wouldn’t consider moving him before you’ve asked. Myeloma is a serious illness and it’s easy to leap to conclusions even for people like myself at an early stage of the illness.

I have no expertise or knowledge and know only what I’ve read, much of which isn’t always helpful.

[Author]

Posts