Bit of a tough one this after CV19 and not really seeing her grandkids for a year.

My Mum is diabetic and high BP, and her kidney function has been deteriorating for the last 5 years. Her score is currently 11-12 if you know what that means. The renal clinic has been excellent, GP less so, getting her onto enough medicine to control the BP and lately oedema but it has affected her in other ways including tremors, tiredness, etc.

We Mum, Dad, sister and me had a meeting yesterday with the renal team because they have said it’s now time to start preparing for the next phase which will be hemodialysis thrice-weekly at the hospital. We did discuss the possibility of home dialysis but all agreed / came to the conclusion that wasn’t going to be the best option here.

So – what are experiences, particularly of parents or elderly friends / relatives? I’ve googled (obvs) and for a patient >75 y.o it’s not keeping someone going waiting for a donor, it’s very much this is now it. Google says life expectancy in the region of say 2-5 years (she’s 79) but that does include those that have had total renal failure and go onto dialysis from ICU whose LE is measured then in months, so dragging the average down.

She’s keen to see her grandkids get a bit older yet, but also worried that it’ll drag her quality of life down even further. The renal team were very positive on the whole, talking about the sense of community at the unit, free tea and biscuits, Sky TV and so on, but (and TJ’s thread brings this into focus) she is of course aware this is the start of the final phase of her life, albeit potentially still measured in years for now.

What should we expect / what would you say to someone in this situation if you’ve been through it yourself?

Certainly potentially heamodialysis could add years to her life
Its not an area I know much about but in your position I would be helping her to make a clear decision about what she wants

Its a choice between a potentially short life whereby she has all her time to do as she wishes or to spend the remainder of her life spending 3 days a week in hospital.

I would be asking the consultant for their best guess as to the timescales involved in both choices. The more info you have the better decisions she will be able to make

Effectively it comes down to a cost / benefit equation

To give a little explanation of how JUlie came to her decision not to take any further treatment. Her choice was effectively go home and die in a month or stay in hospital, under go several minor surgical proceedures, undergo chemo with an expectancy of a small number of months to live – probably being under continual treatmnent involving 3 nights per week in hopspital or possibly never being discharged

She decided a few weeks of decent quality was worth more to her that a couple of months of constant treatment

I understand and agree that decision absolutely.

At this stage, not sure what the if you do this you get X and if you don’t you get Y is; def a discussion with the consultant but also keen for others real life experience

Yes – tome Julies decision was clear. The one here yo discuss is much trickier IMO

I’ve no personal experience, but I did work on a renal ward years ago. Haemodialysis is hard and I have huge sympathy for anyone who ends up on it.

I always felt especially sorry for some of the elderly patients that were perpetually waiting on hospital transport. Most of their day would be taken up with dialysis and transport to/from the unit, and often they were exhausted after it. It was particularly bad if they didn’t do anything whilst on the machine (~3 hours) and just stared into space.

On the other hand, other patients were more independent and could drive to/from their appointment. They would take a book or whatever (some of the younger patients had phone games / Laptop / Netflix / Gameboys*) and be home for a late lunch.

The doc is right about a sense of community at the dialysis unit. Most patients will know the other people who attend in the same time slots and (at least in our unit) the same nurses are a constant presence. It can be a very chatty welcoming place, but again it depends whether your mother likes a natter or whatever.

I suppose it’s about being honest about your mother’s functional capacity. I can see that for some people it would completely ruin their quality of life. If she’s more like the second sort of patient then it seems like a good compromise to live longer.

* more modern consoles are probably available.